Jerry Wyman's Cancer Battle

The Final Entry

2011-06-07T18:29:00.001-04:00

It was part of my father’s final wishes that I compose his last blog entry.

I am flattered that he thinks my writing is “eloquent” enough to bring closure to something that has come to mean so much to so many people…. but my dad is a tough act to follow!

First of all, since I have the forum to do so, I need to thank all the people (and there were hundreds – I am not exaggerating!) who took part in my father’s wake and funeral services. He used to worry that “no one would come”, and surely would have been blown away by the number of people who came to pay respects. I’m sure I am not just speaking for myself when I say that everyone was so loving and supporting, and the prayers were definitely felt, and brought us a great deal of comfort. All of my father’s final wishes were carried out: Sr. Sylvia (his angel) gave a beautiful prayer service at the wake, people made donations to St. Jude’s instead of sending flowers, my brother AJ stood to his right, Taryn sang beautifully at the funeral mass which was con-celebrated by Fr. Flanagan and Father Herb, my dad’s in-law’s did the readings, and people brought photos & other fun trinkets to bury my father with, along with one of Terry’s homemade blankets. Every detail was met, none to small. I think we did him proud.

My father truly left this world with no regrets. He said everything that needed to be said, and even left letters and gifts for the people who were closest to him. There is however one more thing I know he wanted to do, and it is my fault he didn’t get to do so….

He wanted to tell his blog readers (who have all come to mean so much to him) that he was going to become a grandfather this December.

When I found out I was pregnant, I could not wait to tell my dad. I knew he would be so excited. My husband and I really wanted to wait until the end of my first trimester to tell everyone, but made an exception for parents. Since I am due in December, we wrapped a framed picture of the ultrasound in Christmas paper, and gave it to him as an “early Christmas present”. Dad was ecstatic, and wanted to tell everyone right away. My husband and I understood, but really wanted to wait until the end of my first trimester to go public. I ended the first trimester the day after my father died.

I know he couldn’t wait to tell the world he was going to be a grandpa. He may not be here now to do that himself, and I am sorry for that, but to make up for it, I can share with you the video of when we told him. I don’t think he would mind.

http://www.youtube.com/watch?v=Z-gLAhM2JAk

There are so many qualities of my father that I hope our child inherits. I hope he or she is able learn from adversity, always advocate for themself, find humor in things that make other people cringe, and find it in their heart to help others – even when they are struggling. (I also hope our child shares my dad’s love for theater, passion for holiday decorating, and appreciation for diner food!)

Not only will my father live on in our child, but I hope he lives on through all of you. All he ever wanted was to attach some kind of meaning, or purpose, to his battle. If even one person has learned something from it, whether it be about a certain kind of chemo or just how to how to laugh when you feel like crying, I know that goal will obtained. Take what he has shown you, apply it to your life, make positive changes while you still can. But most importantly, stay strong and carry on.

With sincere thanks and love, Heather Wyman Boccassini

CARRY ON

2011-06-05T10:56:00.000-04:00

Jerry passed on June 2, 2011 at 11:40 a.m. The last two and half years have been a fight for my husband's life. We spent many hours talking about how it would be at that final moment. His biggest fear was that it would be painful. I promised him it would not. We spoke often of the afterlife and that moment when he would be taken from earth and transported to heaven...how it would be....who would come for him....would he be aware.....would he be afraid. We spent many hours speaking with clergy trying to put his mind at rest. He wondered if his Dad would be the one to come for him.....he prayed his Dad would be the one to come for him. I asked if at all possible, for him to give me a sign and let me know.

My husband's last minutes:

He spent his last days in a hospital bed in our den where family and friends spent countless hours visiting. The bed was alongside a picturesque sliding patio door that overlooked our beautiful patio and pool that Jerry took such pride and enjoyment in. His greatest joy was to see people joining in the pleasure of our backyard....our 'little piece of paradise'. As I sat by my husband's bedside and his breathing deepened, I asked him if he was in pain, he shook his head "no". He pointed in the direction of the patio door to the oxygen tank immediately in front to the bottom right of the glass pane. I attempted to give him oxygen but only to have him push it away. I became frustrated as he was trying to tell me something but I couldn't understand. He then grabbed my hand and gently and softly kissed it. I kissed his back. Within minutes he drew his last breath and left us.

As I sit here in his chair that has now replaced the hospital bed, I'm looking outside of that patio door and it's so clear to me now. I believe my husband kept his promise. The following was the 'sign' I asked for: I believe now he was pointing to the outside (not the oxygen) to tell me his Dad was waiting, surrounded by angels. I believe now he kissed my hand to say goodbye, it was time for him to go.

I believe my husband kept his promise and this was his way of telling me.... there was no pain, his Dad did come for him, and yes he was aware of it all, and no he was not afraid.

It is so comforting for me to know he went in peace, the way we prayed for and that he loved me enough to find a way to let me know.

I thank you all for your prayers, support and most of all the encouragement you gave to Jerry. Every e-mail, every comment, every card gave him the strength to go on.

I love you Jrrrrr and thank you so much for sharing your life with me....Trrrrr

Carry on............................

I'm Still Here

2011-05-27T20:25:00.000-04:00

I'm still alive. Some days I feel like I'm going to die. Some days are worse, I feel like I want to die.

Everyone has been great.

While I can I want to thank everyne who has followed my blog, supported me and given me strength. You'll never know how much that helped me through this.

I made a lot of new friends. I cherish all of you and will remember you and your loved ones to God. I will tell your loved ones how much you love them and miss them. But they already know.

Carry on everyone, carry on.

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Day By Day

2011-05-20T09:58:00.000-04:00

It seems that I get weaker each day that goes by. Slowly, but definitely weaker.

I've been getting a lot of visiters which is nice. This past week was highlighted by a visit from my nephew Matthew.

Carry on.

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This is How It Should Be

2011-05-07T19:43:00.000-04:00

My EC comrades who have gone before me taught me many things about life and about handling this disease. They also taught me about dying.

Here are some brief accounts of their passings, taken from their wives’ blogs.

John Hawker:

Wednesday, June 9, 2010 7:14 AM, CDT

Today at 3:55 am, our dear John...beloved son, husband, step-dad, brother, uncle, cousin, nephew, and friend...was released from his pain and passed into heaven.
Angels everywhere will turn their heads and watch the arrival of their new spirit, we know they have waited for him. They will feel our tears and know how much John is loved and how we all will miss him.

Travis Poll:

Our prayers were answered and T passed peacefully today, the day before his 36th birthday, with me tucked in by him in the bed, my head on his shoulder and my hand holding his hand.

The following is from an email sent to me by Marilee Alvey. She gave me permission to share it.

Larry Alvey:

On July 27, my niece (more like a daughter to me) came over to see Larry. My daughter, Lindie, was there with me. Larry chose to go when the three of us were together. It was a brilliant decision. They've been like my angels, one on either side of me! Well, I went a few steps out to the deck to show my niece my deck. She'd never been over to our new place. That's when my daughter came out and said Larry's breathing was irregular. She was a bit distressed. I forgot that she'd never seen anyone die. All she knew is that breathing is good. Not breathing is bad. I went right in, took Larry's hand in mine and told him in a calm voice. "Larry, I'm right here. I told you I was going to put your hand in Jesus' hand, and that's exactly what I'm going to do." Our daughter held Larry's other hand. My niece stood patting his shoulder. He went. I put my hand on his heart and told him, "I'll be right here." His final flight was over. He passed over into the most beautiful place ever! Imagine his lungs breathing clear, clean, unpolluted celestial air for the first time. Imagine his feet and hands regaining their feeling! Imagine him running once again! No soreness. No fatigue! Now, Larry looks like he's about 20-30 years old! I believe he's flying!

I know that these friends are waiting for me along with Richard Martin and Travis Beus. I’m looking forward to meeting them.

We will carry on together.

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Hospice

2011-05-04T19:04:00.000-04:00

I am under hospice care now. I’m not on my death bed yet but I do require more “comfort” care. And these people are absolutely great at making myself and Terry comfortable.
I think I still have some time left and the hospice people are helping to make it quality time. I can spend time with people who come to visit and enjoy life.

Perhaps I'll survive so long they throw me out of the program.

Carry on.

Be Prepared

2011-04-26T20:19:00.001-04:00

I’m learning how to live with the bag. It’s inconvenient but in some respects it’s better than the Pleurx system. We’ll see how it goes.

My biggest problem now is that I have almost no energy at all. My blood pressure is very low all the time now even after hydration which I’ve had twice over the past week. I have nausea and pain off and on. I believe it’s all a sign of disease progression

I don’t think I’ll be writing much more about medical stuff unless something significant develops. At this point all the medical care is “comfort” care, palliative care. I will continue to blog as much as possible but it is likely to be focused on my thoughts and feelings as I get closer to the end. I tell you this because some people don’t like reading about that. So if you continue with me to the end ….. be prepared.

Speaking of being prepared …. I am. I’ve had two and one half years to prepare. One of my main concerns now is making sure that other people are prepared. That’s not easy.

I’ll begin this phase with the following story.

In September 2008 I was severely overweight. I battled the weight all my life, sometimes successfully, but always ending up where I started or worse. I’m sure I was very close to having a heart attack. God intervened. He said that the only way to get me to lose the weight was to have me get sick. He basically said that I could have almost three more years to make things right in my life. That’s certainly preferable to dying immediately from a heart attack. After learning of my diagnosis and prognosis I would have been very grateful to know I’d be able to live almost three more years. Of course three years doesn’t feel too good after two and a half years are gone but that was the deal.

I can honestly say that these last years have been among the best in my life. I am truly grateful. I plan to make my remaining days just as meaningful. I hope to see as many friend and family members as will see me.

I plan to carry on.

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A Bag of Junk

2011-04-20T21:19:00.000-04:00

After getting the bag attached last Wednesday we had a minor problem develop by Friday. I noticed two chunks of tissue inside the bag. I wasn’t too concerned about that until the tissue lodged itself in the bag’s drainage plug and clogged it. The drainage plug is used to empty the bag as it fills up. It amazed me how this tissue could find it’s way through the tiny holes of the catheter, the narrow tubing and the entry valve into the bag but then get stuck in the drainage plug.

Anyway I could no longer empty the bag so I had to go back to the hospital. They gave me a new bag, a spare one and taught me how to flush the catheter. That was all very helpful but they should have done that from the start. The doctor looked at the tissue and said it was normal to get some. In fact he said it may be pieces of the tumor. So I asked him if we could increase the suction and try to suck all the tumors out.

Interestingly, during the first 48 hours I had the bag I was draining almost 4 liters of fluid per day. That’s an enormous amount. Since then it has decreased steadily to the point where now there has been none for more than 48 hours. Dr. Yablonsky, the interventional radiologist had said that sometimes, when the abdomen remains dry, the ascites may subside somewhat. I didn’t put too much faith in what he said because everything else I had heard or read, including from other doctors, indicated otherwise and gastroenterology was not his specialty. But maybe he was right.

Yesterday I had a routine appointment with Dr. George. I described some pains I was having and her suggestion was pain pills. Everything is palliative now. I declined. I’m not ready to knock myself out. It turns out I was dehydrated so she kept me there for hydration. That was an unexpected two and one half hour stay. I didn’t have my computer with me and my cell phone battery was all but dead so I settled in the chair for what I thought would be a boring afternoon. However Chris, a medical assistant, came over, sat down and spent a good hour chatting with me. We had never spoken to each other so much before. It turns out we have quite a bit in common. I really appreciated his time.

I had more energy after the hydration, but the pain continues. It worries me.

But for now I’ll carry on.

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Rough Days, Sunny Days

2011-04-14T21:56:00.001-04:00

Monday I had the Pleurx catheter implanted. It was done by Dr. Yablonsky, an interventional radiologist. Everything went well including the fact that the conscious sedation kicked in at exactly the right time rendering me unconscious during the painful parts and waking up exactly when it was over. Terry and I left the hospital with me feeling quite well.

Later in the night the local anesthesia wore off and pain set in where they had made two incisions. It was bearable. By Tuesday afternoon the pain was worse but I’m accustomed to that kind of pain and knew it would pass within a few days. However a bigger was developing. Fluid was leaking from the incision where the catheter exited my abdomen. It wasn’t blood or puss or anything like that. It was the ascites fluid. The leaking got worse and worse until it was literally continuous, saturating dressing after dressing as well as my clothes. Obviously something was wrong. I called the hospital and they told me to come in Wednesday morning. It was a long night.

Wednesday AJ brought me to the hospital where we had a little fun with the woman at the registration desk. She had a little trouble with the fact that we both have the same name so she kept asking me my birth date. Dr. Yablonsky examined the incision and gave me the comforting news that he had never seen anything like this before. He brought me back into the procedure room where he looked and poked while watching on the x-ray screens. There was no anesthesia this time and he was poking and pushing pretty hard, trying to reposition the catheter and exit tubing. It hurt! He was not able to reach any definitive conclusion. He thought the problem might be that there was too much soft tissue around the tubing. I think “soft tissue” is the medical term for blubber.

Dr. Yablonsky decided to try abandoning the Pleurx method at least temporarily. He connected the tube to a bag in order to provide a continuous gravity drain. The idea is to not allow any accumulation of fluid in hopes that while dry, the “channel” that the exit tubing creates will heal and seal itself off. He told me if there was any more leakage everything would have to come out and I would be a Pleurx failure. If the leaking stops, we’ll wait at least two weeks for the channel to heal and then hope we can go back to the Pleurx. If at that point the leakage does return everything would come out. I think there’ also the possibility of continuing with the bag, an option I don’t like right now. He said we could also try implanting the catheter on the other side which to me seems questionable.

As of right now there has been no more leakage and the pain is going away. So far so good. But I hate the bag.

Then last night God sent us a consolation gift. Around midnight, Terry’s son Joe called from Arizona to give us the news of the birth of his and his wife Susan’s baby boy, Joseph Richard. What a pleasure it was to see Terry so joyous. Life goes on and new life joins in.

And one more thing ……………………

This is the tree Terry and I planted in the simmer of ‘08. This is the third spring bloom I’ve seen, at least two more than I expected. Warm weather is coming. So is the sun. I love the warm weather and the sun.

Carry on sunshine.

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Frustration

2011-04-04T22:13:00.000-04:00

As I’ve said many times, patients have to be their own advocates or, if they are unable, someone they trust must do it for them. This applies not only to the actual medical care but also to such matters as insurance coverage. Here’s a case in point.

I have made the decision to have the catheter implanted so I can drain the fluid myself. For those who are interested it’s known as a Pleurx catheter. Pleurx is the brand name. After it is implanted each drainage requires the use of a Pleurx drainage kit consisting of a drainage bottle, 3 alcohol pads, a clamp, a cap for the valve, some gauze pads and a foam pad. A case of 10 of these kits costs about $750. You gotta love it. Based on my rate of fluid accumulation I would need about 8 of these per week costing $600 per week.

Before going ahead with the procedure I wanted to make sure my insurance would cover it. I looked into it several weeks ago by calling the insurance company and was told that it is covered but that pre-authorization is required. On Thursday the hospital called and wanted to schedule the procedure for tomorrow. I told the woman that was fine with me as long as she was able to obtain the pre-authorization. She felt she would have it by today so she scheduled it. Over the weekend I pulled out the insurance contract to satisfy myself that it would be covered and exactly what had to be done. My conclusion was that yes it would be covered and yes, pre-authorization is required. Throughout the day today I spoke to the hospital and the supply company and everyone was working on the basis that pre-authorization is required. Then, at about 4:30 in the afternoon the representative from the supply company called and said “Good news! No authorization is required”. I asked her what she was basing that on and she said she had just gotten off the phone with the insurance company. I told her that person was wrong, not what she wanted to hear because she was ready to put in an order. She argued that she spoke to the company herself and had a “reference number” for the call.

I have enough experience to know that the reference numbers only indicate that you spoke to them, it has nothing to do with their obligation to pay. I pointed that out to her and her reply was that conversation was all she had to go by. As politely as my waning patience would allow, I reminded her that was not all she had to go by. I told her that I had spoken to them twice, her own company spoke to them prior to this, and I myself reached the same conclusion after reading the policy. That’s 4 sources that said authorization is required, 1 that said it’s not. Do you think that 1 may be wrong? She agreed to call them again.

Shortly after that the hospital called, happy to have heard from the supply company that no authorization is required and ready to go tomorrow. Again very politely, I told her no, they needed to get this straightened out and rescheduled to procedure. Shortly after that the supply company called to say I was right, authorization is required and they would be faxing over the necessary paper work. Had I proceeded without it I would have been stuck paying for at least the first round of supplies. Dopes.

I should be having the procedure later this week. I decided to do it because although I seem to be able to have the fluid drained every eight days, the sixth and seventh days are very uncomfortable. So I’m useless three out of every eight days. I hope to be more comfortable more often when I can drain myself. It’s only palliative but that’s all I have now.

In general I’ve been feeling better since I’ve been off chemo for a while. I don’t like the fact that there’s nothing fighting the cancer now but it is what it is.

Carry on.

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For Patients

2011-04-01T18:35:00.000-04:00

As an EC patient who used the internet extensively to learn as much as I could about my disease I wanted to make sure I passed on as much useful information to other patients as I can. There are a few things that come to mind now.

First of all, don't be discouraged by the results or side effects of initial chemo treatments. There are numerous ways to deal with the side effects. Talk to your doctor. S/he will probably have a remedy. If you don't get positive results from the first chemo regimen don't give up. There are others out there. Realistically, this disease usually cannot be beaten by chemo alone. Surgery is probably your best chance if you are in early stages. But chemo can buy you time. It can be precious time. And who knows, it may be enough time for science to find a cure.

The biggest disappointment to me was the Sir Spheres. I expected that treatment to put an end to the liver tumors. It did not. In fact I think it is the liver tumors will ultimately kill me.

The biggest surprise to me has been the ascites. I've read a lot about this disease and about other patients and had never heard of this happening. It has been the most difficult symptom to deal with. Since I've had it I actually met another EC patient who suffers from it. He happens to live about two miles from me and goes to the same oncologist. But when I first started to be affected by it I didn't know anything about it. Unfortunately, the more I learn about it and the longer I have it the less I like it. It is usually a sign of disease progression. It usually never resolves. It is extremely uncomfortable. It sucks.

Fight as hard as you can and as long as you can while still maintaining a decent quality of life. We are blessed to be given the time and the inspiration to try to mend parts of our lives that need mending. But when the time comes it is because God wants you by His side. And there is no better calling.

Every patient is different. Your journey will be unlike all others. Wherever that journey takes you, whatever you encounter along the way........

Carry on.

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It's Official

2011-03-23T16:03:00.001-04:00

Yesterday I saw Dr. George and told her my thoughts about stopping chemo. She was in complete agreement. When the Chemo Kaiser says no more chemo you know it’s time to stop. I had made up my mind last week but didn’t see her until this week.

I asked Dr. George how much time I could expect, a question she doesn’t like to answer. But I pressed her. She said that once people stop chemo it’s usually six to twelve months and right now my liver and kidneys are functioning adequately so that’s a reasonable expectation. That’s actually more time than I thought so it was encouraging. That much time may allow me to make a trip to Arizona and/or Florida. I plan to spend a day fishing with my brother. I haven’t gone fishing for a long time and to do it with him will be fantastic. And it was his idea! And we cannot overlook the fact that six months gives me another summer, my favorite time of year. Soaking in the sun is likely to buy me even more time. Most people don’t know it but I run on solar energy.

I go for paracentesis again tomorrow. Depending on how much fluid they get I’ll be making a decision about the implanted catheter.

Carry on.

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A New Phase, A Changed Life

2011-03-16T21:49:00.000-04:00

Last Thursday I had blood drawn. On Friday I found out that my CEA count has shot up to over 700. The chemo is not working. Furthermore, my white blood count was way down and Dr. George said I would not be able to get it this week. So it seems clear. My body is not tolerating the chemo the way it’s supposed to be given and the way I’m getting it is not working. It’s time to stop chemo. It’s a tough decision but one that I knew was coming sooner or later. So now this battle will be fought by me, my body’s natural defenses, and God.

Today I went for paracentesis after eight days since the last one. They only got 7 liters out which is encouraging because last time it was 12 liters after eight days. That and the fact that I felt so much better afterwards really boosted my spirits.

I’m very close to getting the semi-permanent catheter implanted but I’ll probably wait another eight days and have paracentesis again. If the volume continues to decline I hope to avoid the implant.

I’m very happy to report that I was able to check off another item on my bucket list. There was an anonymous comment left on my last blog post that read in part “… I want you to know that you have changed my life. You have taught me to be more courageous, more grateful and more aware.” I don’t know about courageous but I have often said that this disease has made me more grateful, more aware of other people and more appreciative of things I never noticed before. If my blog has helped someone live their life with the appreciation I wish I had lived mine with then I have a accomplished something special. Some people have alluded to this in the past but anonymous is the first one to tell me I changed his/her life. So I’m checking it off the bucket list. Thank you anonymous.

Carry on.

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The Gifts Keep Coming

2011-03-12T20:09:00.000-05:00

Last night Terry and I attended the engagement cocktail party for my son AJ and his fiancee Lindsey. It was a gift from God that I was able to attend. My ascites was at a very tolerable level and I had some strength. Had it been a week ago they would have had to roll me in. At the risk of being morbid, for me it was like the wedding. I don’t think I’ll be here next year when they get married.

At one point a song came through the music system that inspired me. Terry was involved in a conversation but I took her hand and said “come dance with me”. Mind you now this was not an event where people were dancing. And mind you Terry is much more inhibited than I and this is not something she would normally do. But she did. So in a little corner of the room, next to a speaker, we danced. And every man in the room was jealous. Can you guess what song it was?

The blessings keep coming.

Quickie

2011-03-09T21:54:00.002-05:00

Yesterday I had the ascites fluid drained again after only eight days since the last one. For three or four days prior to that I felt miserable. They took out 12 liters. Twelve liters in eight days. It's coming back more frequently and in greater volume. I'm not sure what that means but I know it's not good. I'm looking deeper into the permanent catheter.

I scheduled an unplanned visit to Dr. George tomorrow. I want to have my blood drawn to check my CEA. If there's no progress I will stop chemo. If there is progress I may stop anyway. Quality of life is becoming more of an issue.

Carry on.

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It Should Be Me

2011-03-05T17:32:00.001-05:00

Did you ever tell a loved one who was sick or injured that you wish you could take some of the pain, that you wish it was you instead of them? My mother has said that to me. And now she has actually done it. Last week the ulcer that led to the discovery of her lymphoma perforated. She was rushed into emergency surgery and they removed two thirds of he stomach. She is now in the midst of a difficult recovery. This is very similar to the surgery many people with esophageal cancer have to endure. I did not. It’s difficult to watch her suffer and I wish I could take some of her pain.

I had a paracentesis treatment on Monday and chemo on Tuesday. The fluid is back already and I’m very uncomfortable. But I’ll carry on.

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I'm A Reject

2011-02-23T16:37:00.001-05:00

I was rejected for chemo treatment yesterday because despite three days of self injection with neupogen, my white blood count was too low. In fact it doesn’t get lower. It was zero. That makes me very susceptible to infection so please, not matter where you are, don’t sneeze or cough if you are facing New Jersey.

I’m disappointed because I really tried to get myself to the point where I could get normal treatment. But Dr. George explained that the cumulative effect of more than two years of chemo has compromised the ability of my bone marrow to produce the white cells. She was also hinting that I should be talking “things” over with Terry and think about taking a nice trip or otherwise enjoying life. It’s not a good sign when the Chemo Kaiser is leaning towards no more chemo.

My plan now is to inject myself over five days with neupogen and try again next week. I want to see if this chemo cocktail gets any good response. I also believe that God has guided me throughout this and the setback may just be His way of saying that less intensive treatment is the way to go now.

Carry On.

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Moving Along

2011-02-21T14:57:00.000-05:00

Last week I had chemo treatment number 45, full doses of carboplatin and paclitaxel. Blood tests revealed that my CEA count has skyrocketed to 533.7 but I have been off chemo for a while. Hopefully the resumption will be effective and bring that back down. Interestingly, my liver function numbers have stabilized, in fact even improved slightly. I guess the chemo affects the liver function as do the tumors themselves.

It seems that this particular regimen is tough on me. It tends to result in three days of extreme fatigue, nausea and general discomfort. Just as it did when I first attempted it back in January, it made me feel like I was going to die and if I wasn’t, I wanted to. But thankfully that has passed.

Interestingly, I received a call from Dr. Rybalov, the gastroenterologist. He said he was speaking to Dr. Weiner, the nephrologist about me and they thought it would be a good idea if I started a combination of diuretics to try to alleviate some of the fluid build up. Dr. George already prescribed a diuretic so I’m having her get in touch with him to coordinate. What impressed me was the fact that two weeks after I saw him, Dr. Rybalov was still thinking about me. I’ve been lucky with doctors and in fact the whole health care system throughout this. And for the record, it has nothing to do with the recent national health care reforms other than the fact that I’m now paying more for the coverage.

Over the past two and one half weeks I’ve had the paracentesis twice. They removed 10 liters of fluid each time. I’m now getting albumin infusions with each procedure. Interestingly, the albumin looks like the fluid coming out. I think they may just be recycling the stuff back into me.

Over the last week I had to inject myself with neupogen so hopefully my blood counts will be good and I’ll be able to get the second round of chemo this week as scheduled. We’ll see. And we’ll carry on.

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The Results Are In

2011-02-11T20:39:00.001-05:00

Well I’ve seen all the Doctors and all the test results are in. The best news is that Dr. Weiner, the nephrologist, determined that my kidneys are still functioning properly. He cautioned that they could start to fail at any time because they are under a lot of stress. But for now they’re good.

Dr. George advised me that the MUGA scan, for the heart, showed some improvement but my heart function is not back to the point it needs to be in order to resume the Herceptin. The danger is congestive heart failure. Keep this in mind.

Dr. Rybalov, the gastroenterologist, delivered some unexpected news although I think it may be very useful. I saw him primarily to determine whether or not I am a candidate for the semi-permanent catheter to drain the abdominal fluid myself. As you may recall from my last post, if the ascites is caused by portal hypertension the risk of infection is greater and they will not put in the catheter. According to Dr. Rybalov, the test results were “suggestive” of some portal hypertension. Portal hypertension is usually caused by alcohol consumption which cannot be the cause in my case. It can also be caused by none other than congestive heart failure. Hmmm. Here’s an example of how multiple doctors don’t always coordinate well. I don’t know how much Dr. George knows about portal hypertension and Dr. Rybalov had no way of knowing about the MUGA scan results. That’s why it’s important to stay informed and act as your own advocate. I told Dr. Rybalov about the MUGA results and he said the ascites was probably being caused by a combination of that and some liver disease. Interestingly, I pondered about the possibility of the ascites being caused by my heart back in my December 21st post. The bottom line is that Dr. Rybalov said he would approve the catheter if I wanted it for comfort. I don’t for now. Rather than take the risk I want to give my heart time to improve more and get some more chemo hoping to knock back the disease somewhat. If that alleviates the ascites I would be real comfortable.

Dr. George agreed that we can go full speed with the chemo now except for the Herceptin. That’s probably good for longer term heart well being. That’s what we’ll do next week.

One more thing. I’ve read a lot about how important it is to exercise as much as possible to help the immune system, the heart and general health. So I’ve been going to LA Fitness as much as I can. I have a pretty intense workout regimen which I recommend. I start with 20 minutes in the Jacuzzi followed by 10 to 15 minutes in the sauna. This routine is made even tougher by the fact that I don’t take a break in between. My fellow patients, push yourself to try this. It works for me.

Carry on.
--------------------------------------------

Double Update

2011-02-01T11:18:00.000-05:00

Yesterday I, my brother and my sister saw my mother’s oncologist with her. She had the required tests and scans last week. The best news we could have hoped for was that they saw nothing they weren’t expecting and that treatment could be given as planned. That’s the news we got. So she is in a class for which CURE is the objective and statistically very achievable. Obviously we are very thankful. She will begin chemo next week.

As I said in my last post I learned a lot after seeing two specialists, a gastroenterologist and a kidney specialist. The gastroenterologist was suggested by Dr. George to determine whether or not I am a candidate for the semi-permanent catheter to allow me to remove the abdominal fluid myself. We don’t know the answer to that yet. There are basically two probable causes for the ascites. One is liver disease, the most likely cause in my case. The other possibility is a condition called portal hypertension which is usually found in people who drink. I never drank. If it is being caused by portal hypertension I would not be a candidate for the catheter for reasons I’ll explain later. To determine the cause, when I have the next paracentesis (draining) later this week a blood test will be done on the same day. The fluid removed will be sent out for testing and the protein level in it has to be compared with the protein level in the blood.

Assuming I am a candidate for the catheter, which is likely, I will have to make a decision as to whether or not I want it. As I’ve mentioned before there is a high risk of infection with paracentesis. The risk is even higher with the implanted catheter. The way the doctor explained it is that it is a foreign body in the abdomen. This foreign body has “communication” with the outside, constantly exposing it to germs if not handled properly. If it should become infected it is extremely painful, would likely require hospitalization, may have to be removed, and could be fatal. If the ascites is caused by portal hypertension the risk of infection is greater which is why that don’t use them for those patients. I would also have to consider the restrictions the implant would impose. I would no longer be able to mountain climb, sky dive or bungee jump.

This doctor gave me the prescription for the next paracentesis but also ordered that albumin be injected as the fluid is removed. The albumin should help to counteract the negative effects draining has on the kidney and my blood pressure. He was so helpful I figured I’d take a shot and ask him if he had a cure for me. He didn’t.

From his office I went to see the kidney specialist. He was very informative, most notably in explaining why I have so little urine. Because my fluid is escaping into the abdomen, it is not flowing through the blood stream to the kidneys. The kidneys, since they are not getting fluid, are tricked into think that I am dehydrating. They shut down urine production to conserve fluid. This forces more fluid into the abdomen. This is a self perpetuating condition which they can do nothing about. The longer it continues the more likely it is that the kidneys will shut down completely, That will be the end. By the way, dialysis has not been successful in this situation. The only hope of breaking this cycle is to treat the underlying cause of the ascites. Hence my quest to get more meaningful chemo and at least stabilize the liver tumors.

This doctor ordered another blood test, urinalysis and a kidney ultrasound to rule out any other cause and to assess the present condition of my kidneys. All of these tests have now been done and I’ll see him again next week hoping to get the go ahead for more chemo. He also agreed with the gastroenteritis’s use of albumin.

Today, weather permitting, I’ll have the MUGA scan to see if my heart is ready for more Herceptin.

So the plan is progressing; get every part of me ready for battle and then head for the front line.

Carry on.
----------------------------------------

Thank You Althea

2011-01-28T11:09:00.003-05:00

I saw two specialists Wednesday but don’t feel like writing about medical things right now. Suffice it to say they both want me to have some tests done and neither one has a cure for me. I did learn a lot and will write about it soon.

I do want to correct two wrong impressions I seem to have left with my last post. First of all I have nothing against hospice. I think they are a great organization with even greater people involved. I plan to use them, just not yet. It seems the trend these days is to get hospice involved earlier than what used to be so they can get familiar with the patient, family and circumstances. People used to wait until they were on their death bed. I will wait until I am at least close to my death bed and I’m happy to report that I’m not close yet. Fortunately I’ve been feeling good. I even got out and cleaned all the snow off the driveway, sidewalks and cars yesterday. Then I went out to lunch with AJ and his fiance.

The other wrong impression I gave some people was that I was now seeking a natural cure. I am not. My intent is to get my body strong, mostly on it’s own but utilizing any medical intervention needed to get it there. I will have tests done to make sure it’s ready. Then, hopefully, I will mount another full scale chemo attack.

Now I’d like to share something I received last week. My good friend Linda works with a lady named Althea. Linda shared my blog with Althea and Althea wrote a poem which Linda forwarded to me. I hope it doesn’t seem like I’m tooting my own horn. It just made me feel good.

A BEACON OF LIGHT

Dedication to

Jerry Wyman

For the past 28 months, you've shared the struggles you face

Ups and downs, highs and lows, have dominated your race

Amazing how your sense of humor, is well and so alive

The laughter you give helps us to bear, the tears here in our eyes

You mentioned how you wonder, why God has prolonged your life

It is because he has ordained you, as a beacon of light

For you to be able to encourage another, while you are going through

Is evidence you are an angel, and God is using you

For it is said that God knows, how much we can bear

He uses the strong to help the weak, realize hope is there

Our prayer for you Jerry Wyman, is that you will receive

All the strength you’ve given out, for others relief

May God grant you and your mom, sweet serenity

As the two of you press toward victory, through your journey

By: Althea Price-Drayton

http://www.expressionswehave.com/

--------------------------------------

Plan Implemented

2011-01-25T20:40:00.001-05:00

Yesterday I saw Dr. George. My blood was drawn and I was given the go ahead for chemo. But I told her of my inclination to take some time off from chemo and my reasoning. She suggested I contact hospice. Well, that was not her immediate response but the topic did come up. I’m opting out of that for now too.

Dr. George was actually very supportive of my idea. I gave her every opportunity to talk me back into chemo but even the Chemo Kaiser doesn’t have enough faith in this regimen to insist on it. She even raised another argument in favor of taking time off; the risk/reward consideration. There’s the risk of doing damage to the kidneys or further compromising my immune system with little expectation of reward.

Dr. George has helped me implement my plan with gusto. Tomorrow I will see a kidney specialist to assess the current condition of my kidneys. Hopefully we’ll find out they can tolerate some more abuse. I’ll also see a gastroenterologist to get advise about the ascites. We will consider a semi-permanent catheter so I can drain the fluid out myself on a daily basis. Some people have suggested this to me previously but I’ve resisted because I’m afraid it will be restrictive. I probably don’t have a choice now. I still have to schedule the MUGA test to see if my heart can take more Herceptin.

So my hope is to prepare my body for a full attack on the disease in a few weeks. If things don’t work out, by that time I may be ready to talk to hospice.

Carry on.

-----------------------------------------------

A Tough Decision

2011-01-23T18:27:00.000-05:00

I have a close friend who is a doctor. He doesn’t practice conventional medicine, rather alternative approaches such as nutritional changes, vitamin supplements and lifestyle changes. Since I began my ordeal he has recommended that I not take chemo because even the doctors who favored chemo admitted it was not a cure. He told me the chemo agents are toxic. They will eventually destroy my body by knocking out my natural immune system, eating away at muscle mass and destroying my kidneys. I did not take his advise, opting instead for conventional treatment. I think I made the right choice.

But at this point in the journey it may be time for an adjustment. So tomorrow I will talk to Dr. George about suspending chemo for a while. Here’s my thought process causing me to lean in this direction.

I’ve been experiencing something I haven’t mentioned before that is related to the ascites. I rarely urinate anymore, usually twice a day and only a trickle each time. It seems that virtually all my bodily fluid is accumulating in my abdomen. It is not passing through my system. This means that my kidneys are not being flushed out. Since I started chemo it has always been stressed that it is important to hydrate so the kidneys can be flushed. I suspect that because my system is not being flushed the chemo is staying in my body longer than intended. This may explain why my bone marrow has been having trouble regenerating white blood cells quickly enough.

I have no reason to think my kidneys are damaged at this point. But if I continue to put chemo in them without flushing them out they certainly will become damaged. I would then die of kidney failure.

I have very little muscle mass remaining. I have a great big belly from the fluid, yet the skin on my upper arms hangs and dangles like a ninety year old man. I am very weak in my arms and legs.

I am having fewer and fewer days when I feel relatively well. Aches, pains, fatigue and general discomfort are the norm. This may be from disease progression which argues for taking more chemo. It may be from the ascites which would mean it won’t stop unless the ascites stops. But it may also be from the accumulating effects of chemo.

For the sake of argument let’s assume that going ahead with this chemo regimen is the correct thing to do. The problem with that is so far it’s been impossible. The regimen calls for three weeks on treatment then one week off. I had one week on and then was unable to get treatment for the next two weeks because of the low white blood cell count. Dr. George wanted me to also have Herceptin but cannot give it to me now because of the damage it has done to my heart. The damage is reversible and I’m supposed to have another MUGA test in the beginning of February but for now, no Herceptin.

The point is it seems that at this point in time I’m only able to mount a half-assed assault on the disease.

Depending on what Dr. George has to say, my hope is to take several more weeks off from chemo. During that time I want to rebuild my strength. I’ll have the MUGA test and hopefully be able to resume the Herceptin. My kidneys will get a break. If I’m really lucky maybe it will turn out that the chemo has been causing the ascites and I’ll get some relief from that. Then I’ll go back on the chemo at full strength and hope to get a response from it.

I don’t know if this is the right thing to do. I’m nervous about it. But it may just be that it doesn’t matter what I do now. The point I’m at now was never unexpected.

------------------------------------------

Today

2011-01-20T16:47:00.014-05:00

Through the grace of God I was able to have the paracentesis today. They took 8 ½ liters of fluid out of my abdomen. It’s amazing to me that there could be so much in there. For those who are metrically challenged that’s more than 4 large soda bottles. It’s about 2 ¼ gallons sloshing around in my belly putting pressure on my organs, my diaphragm and the blood vessels that supply my legs.

It’s hard to describe the relief this procedure provides. It’s temporary and does nothing for the long term battle except to give me strength to fight on.

I think this is an appropriate time to share the following. I’ve seen it several times. It was recently sent to me by Marny whose husband died of esophageal cancer quite some time ago. She still contributes to a list serve I subscribe to and has inspired me many times.

DAILY SURVIVAL KIT FOR SERIOUS ILLNESS
by Thomas L. McDermitt

1. Today I am going to try to live through this day only, and not dwell on or attempt to solve all my problems at once; just focus on the piece that is today. I can do something for several hours that would be difficult to even think about continuing for several months.

2. Just for today, I am willing to accept the possibility that there is a purpose to this suffering; that it can be a source of meaning and growth for myself and others, though I may not always recognize the ways. And it seems possible that this suffering will not be in vain, because of what may be some kind of existence beyond.

3. Just for today, let me remind myself that I am basically a worthwhile person, worth loving, despite my faults and limits. I deserve the efforts of others to help me through my illness.

4. Just for today, I want to be aware that it is all right to want too much from others at times. Illness brings out and intensifies the small child in all of us. And if I feel hurt when those who care for me cannot be there, it may help to remember that they have needs, frailties, and limitations of their own. A lack of response does not mean that they are personally rejecting me.

5. Today I may feel the need to complain a great deal; I may have little tolerance; I may cry; I may scream. That does not mean that I am less courageous or strong. All are ways of expressing anger over this mess, of rightly mourning my losses. Endurance itself is courage.

6. It is my life at stake now. So maybe today I can allow myself to be a little less concerned about the reactions or impressions of others. Maybe I can allow myself to feel a little less guilty or bad about what I did not accomplish or give. Perhaps today I can be a little more gentle toward myself.

7. Surviving this is all so difficult. At times it seems impossible - that I have had enough. Down the line I will know if and when I have had enough, when I cannot push the limits any further. I will have the right to choose to stop, without feeling that I am "giving up." But today I think I can deal with this illness. Sorrow runs very deep, but I think I can rise again.

8. Just for today, maybe I can give healing "the benefit of the doubt." The drugs are powerful; the natural healing capacity of my body is powerful. And who knows, perhaps there is healing power in my will to struggle, and in the collective love and will of others.

9. Just for today, perhaps I can take heart that we are all connected. And I may still have some things left to contribute to the family of man; some light to add to the light. Even now my endurance (however imperfect) is a gift, an inspiration for others in their struggles.

10. It seems reasonable that there is a season for everything, and a time for every purpose. Pain, weakness, and exhaustion may distort my senses and spirit. Today, however, I can at least find some hope in nature's way, if not in some master plan. The chances are fairly good, and it seems worthwhile to hope, that I will have some cycle of wellness yet.

Copyright © 1989 Thomas L. McDermittCarry on.

Carry on.

------------------------------------------------

Losing Control

2011-01-18T18:02:00.002-05:00

Throughout this battle I’ve tried to find out what has to be done, lined things up to get it done and then move on to the next challenge. I’ve listened to all the professionals but have taken the approach of trying to make decisions for myself and to stay on top of things. That’s becoming increasingly more difficult to do. Yesterday I went for the chemo treatment that was delayed a week because of a low white blood cell count. Also, I’m already at the point where I need another paracentesis treatment to remove fluid so I was going to discuss timing with Dr. George, hoping to delay it a little but having things set up and ready to go. My plan didn’t work out. My white blood cell count is even lower than it was last week. Dr. George explained that the longer one is on chemo the more difficult it is for the bone marrow to produce the cells. Another one of the cumulative effects. So no chemo. And no paracentesis which carries a high risk of infection under normal circumstances. The plan now is for me to again give myself daily injections of neupogen to boost the white count. We scheduled the paracentesis for Thursday. I’ll go to Dr. George first to test the blood and if it’s ok I’ll go right o the hospital. But I don’t think that’s enough time to get the blood count up. Chemo is now scheduled for next Monday. It bothers me that my body is not letting me do the things that I know need to be done. I’ll suffer through the delay in the paracentesis but another delay in chemo is not good. Without it I have no chance. Can anybody read that writing on the wall? ----------------------------------------------

Good News

2011-01-16T20:04:00.005-05:00

My mother's lymphoma has a very high cure rate. Barring anything unexpected from some scans she will have done next week her prognosis is excellent. She will have to undergo chemo and radiation which I hate to see her have to go through. But it seems that if you have to have cancer, this is one of the ones you would want. It'll be a battle, but a winnable one. And I'll battle it with her, hopefully to the end. Speaking of hope I have one that may be unrealistic. My son AJ is now engaged to his longtime girlfriend Lindsey. They both seem very happy. My hope is to make it to their wedding.... in July 2012. Let's go for it! Carry on. ----------------------------

Maybe This Is Why

2011-01-12T18:57:00.005-05:00

I have often pondered why God has given me as much time as He has. I couldn't come up with an answer and eventually concluded that He is just blessing me with the abundance of gifts I have been given over the past 28 months. But I may have an answer now. Yesterday my mother was diagnosed with lymphoma. It may be that my remaining purpose is to help her fight her battle. On Friday she has an appointment with an oncologist. I will go with her and continue with her as long as I can. This Spring's marigold planting will be especially sweet. We'll carry on together. -------------------------------

None of the Above????

2011-01-10T18:43:00.002-05:00

Today Terry went with me to see Dr. George. We were going to have the discussion about whether it made sense to continue chemo or stop it to go for better quality of life remaining. I began that talk but Dr. George quickly put an end to it. She told us that she could not give me chemo today as scheduled because last week's treatment had knocked my white blood count down too low. The low count was also the likely reason for my feeling so badly the last few days. That came as good news to me. I'd rather it be that than the things I was considering. And I have been feeling better today. Thank you for all your concern and prayers. Now if I may ask, please pray for Robbie LaSalle who had the surgery a short time ago and has been having a very difficult recovery. And they just found new tumors in his liver. So the plan now is to skip chemo this week and go onto a two week cycle instead of the planned three weeks on one week off. We're back into that balancing act ... treatment vs. side effects and weighing that against the benefits. And we're hoping. And we're carrying on. ------------------------------------------

Short and Sweet (Well Not Really Sweet)

2011-01-09T19:04:00.004-05:00

I was trying to go three weeks before having another paracentesis treatment but didn't make it. On Thursday night I suffered and thankfully Dr. George's office was able to get me set up for it on Friday. Terry had to shovel us out of the snow which made me feel real bad. But we got to the hospital and had it done. They took out 6 liters, the maximum that Dr. George prescribed. But after 6 liters the flow was still strong and the radiologist said there was a lot more. When I woke up Saturday morning it felt as if I didn't even have it done. I could tell there was more fluid. I have been feeling extremely fatigued and lacking of any meaningful energy. I'm having unusual pains. I sleep 12 to 13 hours a day. Tomorrow I will talk to Dr. George to try to determine if I'm feeling this way because of the chemo, the disease or the ascites. Then I'll decide what to do next. Carry On.

Hanging On By A String

2011-01-05T17:19:00.001-05:00

Over the last few days I got PET scan results and blood test results. None of it is good. The scan showed the tumor in my liver has gotten larger and there are several new ones. The same is true for my lungs. The blood test showed my CEA count increasing again. It’s now at 289.5. None of this was unexpected. We knew the recent chemo regimen wasn’t working. Dr. George, who up to this point has never said anything negative, was as negative as I think she’s capable of. She said there will be a point when I have to decide if there is any point to enduring more chemo and if it makes more sense to switch to “comfort care”. I think I know her well enough to know she’s telling me that point is rapidly approaching. She also said frankly “I’m out of options”. Not me! I wrote earlier that I was going to talk to Dr. George about some regimens I had read about which I did last week. Between that conversation and this week’s she agreed to try carboplatin and paclitaxel. I think at this point she would agree to anything I wanted because she’s got nothing better. I’d ask for rum and coke but I don’t drink, so maybe I’ll ask for liquefied cake and ice cream. I only got the paclitaxel on Monday. There was concern about my kidney function so Dr. George wanted to see the blood test results before giving me the carboplatin. Today the results showed the kidney was OK so I got the carbo. Monday I’ll get a second round of each at the same time. Although I’ve never had these exact two chemo agents before I have had their cousins so there’s probably not too much hope. But it’s worth a try to buy some more time. I also have another regimen lined up if this doesn’t work. My only hope now is for one of these regimens to kick in and knock these tumors down for a while. I’m hanging on by a string now. The fluid is back in my abdomen. Judging by the size of my belly there’s more than ever but it is not yet uncomfortable enough for me to go for the paracentesis. Carry on. ---------------------------------------------

Don't Worry About It

2010-12-27T12:46:00.009-05:00

I’ve said before, as have many people, that when you’re in a situation like mine you look at things differently. This is certainly true about serious things like how you value loved ones and how you view faith. But it’s also true when it comes to less important things. And sometimes you can laugh at things you may not have before being in this situation. A good example was Jim Valvano, former basketball coach for North Carolina State University. In 1993, just eight weeks before he died of bone cancer, he gave a speech at the ESPY Award presentations. It was a very passionate, poignant speech in which he was talking not only about his career, but also about his battle with cancer. After a while someone from the production crew in the back of the audience started frantically signaling him that he had only 30 seconds left. Valvano said “That screen is flashing up there thirty seconds like I care about that screen right now, huh? I got tumors all over my body. I'm worried about some guy in the back going thirty seconds? You got a lot, hey va fa a napoli, buddy. You got a lot…” In other words some things are just not as important as they once were. You don’t sweat the small stuff. You gotta FUGETABOUTIT. Like Jimmy V, I don’t know how much time I have left so there’s a lot of things I can just FUGETABOUT. Here’s a few examples. In order to lessen the amount of typing and be as brief as possible I’ll just abbreviate FUGETABOUT with the shortened version FUG.

For a while I was a little self conscious about going out in public with the visible side effects of chemo like eyes constantly tearing, nose dripping or simply wearing the infusion pump. Now I just say FUG it, I don’t care.

We’re all told that in order to lead long healthy lives we need to have good eating habits. Heck, much of the time I don’t feel like eating anything so if I see something I want, regardless of its nutritional value…. FUG it. I’m eating it.
Long term financial planning ???? For me long term is about three months. Seems to me the only financial plan that would work in that time frame is to buy lottery tickets. FUG it.
Sometimes when I go outside to work I’m warned to put a hat on or wear sunscreen. Sunscreen? Why? I’ve got life threatening tumor inside of me and I’m gonna worry about a possible mole on my skin? FUG it.
I used to worry about the political environment and the direction our country is headed in. But now I realize that no matter how bad it may be, this country is not going down for at least another 10 years. Ten years???? I don’t think that will affect me. FUG it.
Recently I’ve been warned that having paracentesis (draining the abdominal fluid) runs the risk of infection. Are you kidding me? Have you seen my chart? This fluid is causing me difficulty eating, breathing and walking. My body is riddled with cancer. My liver is not working well. Do you really think I’m concerned about a booboo on my belly? FUG it, do the procedure.

Carry on.

-----------------------------------------

Merry Christmas

2010-12-25T18:55:00.000-05:00

This morning I made a point to kneel down and talk to my comrades who have gone before me as a result of this disease. I thought about Travis Beus, Richard Martin, John Hawker, Travis Poll and Larry Alvey. I thought about things I know about each of them so I could relate to them individually and then I talked to them as a group. I wish I could say that I got a response but I didn’t. I think they were busy celebrating a birthday. Personally, I had a great Christmas eve and Christmas day. I hope you all did as well. Carry on. -----------------------

Terry Knows Best

2010-12-21T16:33:00.010-05:00

I started to feel a little better Sunday night and it continued yesterday. I was beginning to think that maybe my discomfort was being caused more by the chemo than the ascites and now the chemo was wearing off. But Terry urged me to set up the paracentesis pointing out that Christmas was coming and I would not want it to get worse and not be able to have it done. Boy was she right! Yesterday I got the paracentesis scheduled for today. As the day went on yesterday I began to feel the effects of the fluid more and more but it was manifesting itself as leg pain and shortness of breath rather than the gastric discomfort I felt over the weekend. Today the procedure was done and they removed 5 liters of fluid, one more than three weeks ago. And now I feel great. It's amazing what a difference it makes. Thanks Trrrr. I'm hoping the test results again show no malignancies in the fluid. I have a theory that the chemo agent epirubicin, perhaps in conjunction with the herceptin which we discontinued, is causing my heart not to pump propery. That's really not theoretical becuase we know that from the MUGA test. The theoretical part is that it is my heart not pumping correctly that may be causing the ascites. So I'm going to schedule an appointment with Dr. George to suggest we discontinue the Epirubicin now. CEA counts show it's not working anyway. There are two more chemo regimens I'm familiar with we haven't tried yet and I'd like to give her time to consider them and set them up. And then maybe we can get the ascites to stop. The PET scan next week will come at a perfect time for a baseline if we make a change. Maybe this is all wishful thinking but you gotta have hope. And you gotta carry on. --------------------------------------

Tired, Inspired

2010-12-18T19:58:00.000-05:00

This disease seems to either kill you fairly quickly or wear you down little by little. It’s beginning to wear me down. When I went for my forty-third chemo treatment and the accompanying blood test this week several things were revealed. First, Dr. George informed me that the MUGA test I had last week showed that there has been some damage to my heart. It is reversible, but only upon stopping the agent that is causing it. So Dr. George cut out the Herceptin, one of two drugs I’m currently taking that causes the damage. Looks like another example of “if the disease doesn’t get you the treatment will”. The blood test showed that my CEA count continues to rise. It’s now at 202.9 compared to 149 three weeks earlier. Apparently this chemo regimen isn’t working. Dr. George ordered another PET scan. I think she knows the treatment is not working and would have changed it by now if she had another idea. We’re running out of options. Since I had the paracentesis to drain the abdominal fluid less than three weeks ago I have felt that the fluid is returning. Over the last two days it has really hit hard. It has become extremely uncomfortable and it’s difficult to eat. I think I need to have the procedure done again. So now, instead of having two free weeks between treatments I’ll probably have paracentesis one of the weeks and a PET scan the other. I’m getting very frustrated and tired of all the doctors, hospitals, procedures and discomfort. I know this is all a bummer and frankly I had been feeling rather depressed. But As I sat down to write this blog entry I opened an email I just received from Diana. Her husband Frank was diagnosed in May 2009. Diana gave me a brief history of all they’ve been through and how hard Frank is fighting. Their story, along with a couple of well timed hugs from Trrrr, has inspired me. I’m ready to carry on. -------------------------------------------

Friends

2010-12-12T21:11:00.007-05:00

Friday evening my friend Joe dropped by for a visit. He spent time with Terry and I just chatting. What was originally going to be an evening like most others tuned out to be some enjoyable time spent with a long time friend. On Saturday my friend Vince came over to help me put up our Christmas wreath. You may wonder why I needed help with a wreath. Well this is an eight foot wreath which I built about five years ago along with a ten foot easel to stand it on. I've put it up myself once, with Terry once and with my son several times but this year I was ready to retire it. Then Vince offered to help and I couldn't resist because I like it. Below is a picture of it. I replace the normal white ground lights with green and red bulbs. They can't be seen clearly in the picture although they are visible. I also use green and red spotlights shining on the house to backlight everything. Getting the wreath up and having good friends has put me in the Christmas spirit. Carry on. -----------------------------------

The Box, Four Years From Now

2010-12-08T21:53:00.001-05:00

Some time ago I started thinking about things I want to say to people and things I want them to have after I’m gone. I decided to start putting these things together and writing letters to people. I started to gather things that are special to me that I want buried with me. All of these items were to be kept in a box to be opened after my death. As you might imagine putting these things together is not easy. I was procrastinating. Yet these things were on my mind and I felt an urgency to get them done. Terry picked up on this and went out and bought me a nice box. She pushed me to get it done and get it off my mind. She was right. The box is almost complete now and that has given me more peace of mind. Terry knows best. But I think the box will have to go into storage for a while. This week I have felt exceptionally good. I think it’s a combination of being two weeks beyond the last treatment, having the fluid drained from my abdomen and maybe even some healing. The week began on Sunday with a family celebration of Gianna’s birthday. Gianna is our niece Cheryl’s eight year old daughter. Terry’s family has been my second family for almost twelve years and in many respects they have been my primary family at times. Spending time with them is always rewarding. On Monday I went for my MUGA test, another radioactive scan, to make sure my heart is still functioning properly. I believe it specifically looks at the left ventricle which the chemo I’m presently on may damage. Hopefully I’ll get the OK to continue. Yesterday I went to the relatively new Mount Airy Casino in the Poconos. I played poker for 9 or 10 hours straight. I really enjoy poker and spending the day doing that took my mind off everything else. And I won some money which always makes it even more fun. Today I had the pleasure of visiting the NJ Division of Motor Vehicles again, this time to renew my license which apparently cannot be done through the mail any more. I won’t go into detail about just how pleasurable it was. The important thing is that I was there for about two hours. An hour and a half of that was spent standing in line. And I did it! I actually had no problem with it. My stamina was way up there. So now I’m looking forward to going back when my license expires again. In four years. I’ve been feeling so good that I feel compelled to go in next week and let the Chemo Kaiser knock me down again. I hesitate to say it but I’m expecting good news next week. Carry on. -------------------------------

Med Stuff

2010-12-03T16:04:00.000-05:00

Last week I had chemo treatment number forty-two. The routine blood test was done and the results showed that my CEA count shot way up to 149 from 83.3 three weeks earlier. Not good. Dr. George said she wanted to see the results after three treatments of this regimen before making any changes. To make matters worse, the liver enzyme counts are creeping higher as well as one of the bilirubin readings. I think it will be my liver that ultimately kills me. From what I’ve read, death caused by liver failure is painless. Another example of how God has been watching over me throughout this ordeal. Throughout last week the ascites (fluid in the abdomen) was growing increasingly more uncomfortable. I was having difficulty eating which I attributed to pressure on my stomach. I was having intestinal discomfort which I thought might be from pressure on the intestines. I started having shortness of breath which was from pressure on my diaphragm although before I knew that I was afraid the tumor in my lung was getting worse. My legs were getting very weak which unbeknownst to me was also a symptom. I was feeling so bad I thought I was going to die and if I wasn’t I almost wished I would. It all culminated this past Monday when I had a sandwich and could eat nothing else all day. It was as if my stomach was forcing it back up. I decided to call Dr. George and ask her to arrange for paracentesis, the draining of the fluid. To my surprise, she was able to set it up for the very next morning. So Terry and I went to the hospital on Tuesday. After getting as far as laying on the table and having the preliminary ultrasound pictures taken, the technician asked me if I had a blood coagulation test done. Excuse me? Nobody had told me I needed a blood test. She asked if I had any blood tests recently and I told her I did last week. She asked if that included a coagulation test to which I responded I don’t know but I don’t think so. She said that if it didn’t we would have to reschedule the procedure. I asked her if there was some way we could do the test right there in the hospital. Either she is a very kind person or I am very charming because she called Dr. George and found out my blood was not tested for coagulation. She got Dr. George to fax over a prescription for the test, set it up with their lab and after waiting about two hours we were in business. Another God flyby. The procedure was interesting and only slightly uncomfortable. They put a catheter in the side of my stomach and let the fluid drain for about 20 minutes. Dr. George had ordered that 3-4 liters be drained. I asked the radiologist why they drain a specified amount rather than all of it. He explained that the fluid puts pressure on the blood vessels which constricts the flow of blood to the legs. Ah, that’s why my legs are weak. In order to compensate for the pressure on the vessels the body increases blood pressure. As the fluid is removed the blood pressure drops. If they took out all the fluid the blood pressure may drop seriously low. So they ended up taking 4 liters. The technician told me that equated to eight pounds. The fluid was sent out for testing. The results were that they could not find any malignancies which I suppose is good but I really don’t know how significant that is. Since the procedure I don’t have shortness of breath, I can eat and strength has returned in my legs. I’m glad I had it done. It may have to be done again depending on how quickly the fluid is accumulating but for now I’m much more comfortable. Next week I’ll have another MUGA test to be sure the chemo is not damaging my heart. I had a very nice lunch yesterday with my sister and bother in law. Tonight Terry and I will have dinner with my daughter and son and their significant others. Life is good. Carry on. ---------------------------------------------------------

Thanksgiving, 2010

2010-11-28T19:10:00.003-05:00

Yesterday I went to Terry’s sister Jacki’s house for Thanksgiving dinner. We were joined by Terry’s other sister Camille and her husband Bob, and Terry’s niece Cheryl with her husband Dan and daughter Gianna. These people have been family to me for the past twelve years and spending the day with them was special. I was reminded of all the things I have to be thankful for. Earlier in the week I had received an invitation from my brother Tim to join him and his family. So after dinner I went to Tim’s house where he, his wife Kathi and daughter Lindsay were hosting a large gathering of Kathi’s family and ours. Although they did a great job, what really made this visit especially nice for me was that I had not been to their house in more than ten years. Tim and I have been slowly making progress towards mending our relationship but this was what I hope is then first step in repairing things with the rest of his family. Lindsay seems to have become quite a baker. She made an apple/blackberry pie and a pumpkin cheese cake. Everybody raved about them. Unfortunately I had to enjoy eating them vicariously because my taste buds are virtually nonexistent right now but I did enjoy seeing how much they were appreciated. Topping off the day was something I’ve been waiting a long time for, a group hug with my mother, sister, and brother. Below is a picture of the four of us but you can see the actual hug on my bucket list. Use the link on the right. So much to be thankful for. Carry on. --------------------------------------

Mixed Feelings

2010-11-21T17:18:00.003-05:00

I’m experiencing conflicting spiritual feelings lately. I’m not talking about good vs. evil but rather what the messages I’m “hearing” mean. It’s very complicated so I’m not going to try to discuss that now. Instead I’ll discuss what I think are medical conflicts. I’m concerned about the fluid in my abdomen, a condition called ascites. I think it’s a bad sign. It’s also uncomfortable so I’ll talk to Dr. George tomorrow to explore doing something about it. On the other hand, I’ve been having more chemo side effects recently. The last time I had side effects like this the chemo worked well. I hope it means that this chemo regimen is working. I’ve been more tired and weak lately. This morning I said to Terry “My eyes and nose are flowing, and my hair is falling out again. Things are looking up!” I am well aware that the side effects a person experiences or doesn’t experience and to what degree has no scientific relation to the efficacy of the chemo. But I’m not a science experiment. I know that I got the best results when I had the most side effects. Dr. George said that it usually takes two treatments before you can judge the efficacy and tomorrow will be my second for this regimen. I’ll have to wait three weeks after that to see blood results. My plan is to enjoy the three weeks. Please continue the prayers for Robbie LaSalle. He is recovering from surgery, a very difficult process. He's a tropper, has a very supportive wife and his pathology results looked good. But it's very tough and will continue to be for a long time. Carry on. ------------------------------------------

Catching Up

2010-11-14T15:16:00.001-05:00

In my last post I indicated that I knew a little bit more about my situation. On Monday I went to see Dr. Jabbour who is the radiologist who would have determined the dosage for the SIR Sphere treatment had that plan not been canceled. I wanted to see if she had any ideas. My daughter Heather was not working that day so she met me there to keep me company. It was great having her. We joked and laughed most of the time. She has an awesome sense of humor and the time flew. I didn’t want the doctor visit to end because the would mean I’d have to leave Heather. But I had another appointment back up north. At one point the doctor had me get up on the examining table and lay back. She said she was going to lift my shirt and asked me if I was OK with that with Heather in the room. I said yes. Then she asked Heather if she was OK. On the wall was a chart showing a diagram of the male prostate and reproductive system Heather pointed to the chart and said “As long as it doesn’t involve anything on that chart I’m OK.” Dr. Jabbour could offer no other options for me except to continue with chemo. I wanted to get her opinion on some things so I asked some direct questions. First I asked her if the fluid in my abdomen could be drained. She said yes but they prefer not to because it will come back and each time they drain there is the risk of infection. I asked her if the fluid was a sign that the end was getting closer. She said yes. Then I asked her how long she thought I had. She said probably not a year. She said that it’s not days because I looked too good (do you think she was hitting on me?). So she said probably months. At that point Heather said “Well I guess I’ll have to buy you a Christmas present”. Everyone laughed and after a brief pause she said “But I’ll keep the receipt.” Perhaps the most revealing indication of what Dr. Jabbour thought came at the end of the visit. She is a very quiet and reserved person whom I had seen only twice before, once for a pre-procedure check up before the spheres and once on the way into the procedure room. As we were leaving she came over to me, gave me a big hug and said “Good bye my friend”. We left and I headed to my appointment with Dr. George, my medical oncologist. What I was thinking about most was that I was sorry to be leaving Heather. I enjoyed her company so much. Dr. George was a little more hopeful. First, she said she would arrange to have the fluid drained whenever I wanted. We’ll wait for it to become more uncomfortable. Next she said that the new chemo regimen I started on November 1st (Epirubicin, 5fu but no Cisplatin) has had good results in Europe. It’s not used very often here. I had a “months” prognosis before and I lasted more than two years with Dr. George’s help. We’re going to try to do it again. On Saturday Terry and I went to our church’s Mass for the anointing of the sick. I’ve written before about what a moving service it is. There were four priests, each assisted by a deacon except for one who was assisted by a nun. Apparently there were not enough deacons available. When it came time for the anointing a priest and a deacon went to each person in attendance and prayed over them. Then they came back and anointed each one with the oils. Now try to appreciate the significance of this. I got the priest without the deacon but with the nun. The nun was my angel, Sr. Sylvia. If you don’t remember Sr. Sylvia’s role in my journey you can look back to my post of January 26, 2009 titled “A Miracle”. Later that day we had dinner guests and Terry, being Terry, went all out with the cooking and preparations. We were visited by our good friends Carol, Denis, Dina, Dina’s mother Barbara and Fr. Flanagan our former Pastor. I addition to having a good time Fr. Flanagan anointed me. That made twice in one day. Seems like a winner to me. Carry on. -----------------------------------------

It's All Right Now

2010-11-08T14:05:00.003-05:00

I have found out a little more about my present situation but I don’t want to talk about that right now. The last time I posted I asked for your prayers that I have enough time to finish the things I need to finish. Those prayers, and thank you for them, have been answered. But as always they have been answered God’s way. He knows what’s best. The most important thing for me is to be sure, as sure as I can be, that my children are headed down the right path in life and that they believe and understand some things that I think I have learned. I have known for a while that my daughter Heather shares my values politically and economically. We have a similar sense of humor. Recently we had a discussion about death, Heaven, and the afterlife. We are in sync spiritually too. My biggest concern with Heather was that she be happy. I will never forget how happy she was on her wedding day and she’s still happy. I’m counting on that lasting forever, thanks to her husband Ed. My son AJ is tougher for me because he’s not easy to talk to and there is so much I want him to know. I have said it before and I think all my other loved ones understand when I say this. AJ has given me more joy in life than anyone. We spent countless days together as he was growing up and they always filled me with happiness and pride. AJ was always supportive of me, even when I was scolding or punishing him. AJ was all I had as an immediate family when I was going through the divorce with his mother. Friday night AJ sent me a letter which I will share with his permission. The first time I saw my father cry was when his friend Mr. Kahn died. I don't remember exactly when it was or how old I was. But I do remember him crying in the bathroom. I walked away and went up to my room completely baffled. Here was the strongest man in my life crying and looking so terribly helpless. I had no idea what to think or do. But I realized then that it was ok to cry, no matter who you were. I don't cry very often. And when I do, there is usually no one else around. I like to think that I can handle myself better in situations such as this. But the truth is, when I read my dad's blog, or when i see him struggle with things that used to be so easy for him, or when I think about life without him, I cry. And I cry hard. But I know it's ok. Because I saw my dad do it and he's the strongest person I know. I'm not one to talk about emotional things such as this with anyone. Whether it be my father, mother, sister, girlfriend. I don't know why, but I feel that sometimes I could talk to a stranger and tell him so much more than i could ever tell anyone in my life. Which is pretty much the motive for this email I am sending to my dad. I fear just as he does, just as my family does, that time may be running out on us. And this may be the only chance I get to tell him what he was to me. When I think of my dad, I remember many things. Soccer is my favorite memory. He drove me to hundreds of tournaments, miles and miles away, weekend after weekend. He showed up at high school games in the middle of his work day. He bought me the best gloves and cleats and shirts, and training that he could buy. And although he kicked a ball like a guy who's shoes were on backwards and eyes were closed, he always had the right advice for me. He was my best trainer. He was a much better baseball player. And I remember all the catches we would have in the front yard. It was a good time every time we went out there. Sometimes he would take me out only hours after yelling at and punishing me for some completely ridiculous thing i just did. It felt like it was his way of saying "Son, you're a moron for (insert dumbass thing I did here). But I still love you and you need to know that." My father always pressed my sister and I to study study study and get good grades. It worked for her but not so much me. She is the college graduate while I am still on Spring Break 2004. But nonetheless, he tried. He tried his ass off to get me to be a good student but I guess it just wasn't in me. But even when I missed baseball freshman year because of my grades and when i dropped out of East Stroudsburg, when I left County College, as disappointed as he was, he always reassured me that I would make it out ok. My mother may have been a bit more understanding in this department but it helped knowing that my father also had my back. My parents were good parents. Even though they didn't work well together and had two completely different parenting styles (like way way different), they were good. And I would never ask for any of them to be substituted. As difficult a son I was, I am a grateful one now. These past few years of been hard. I often find myself wondering if my dad will be at my wedding or meet my first kid. I doubted it many many times. But just as soon as I doubt it, he does or says something that makes me believe again. I have had bad feelings lately that maybe we are indeed running out of time. And I am just waiting for some good news. My dad took me to the cemetery the other day. He showed me where he will be buried, next to his father. I was ready to start crying. But I thought to myself, all those times my dad was the stronger one, I think I owe it to him to be the strong one now. I still can't look at him when he cries, it's just too hard. I have been diagnosed myself with Gastroesophogeal Reflux Disorder and I also have a hernia that I just found out about. It worries me knowing that pretty much everyone in my family has had or has cancer. I can't say I'm 100 percent in love with my chances of not getting it one day. The only thing I can say is that when my days are winding down, hopefully 100 years from now, I am as strong, as ready, and as understanding of the situation as my father is. My father is my hero. He always has been, always will be. He is the strongest most invincible person I know. He was my teacher, my coach, my critic, my partner, and my friend. And I will never forget him and all that he did to make me who I am. I don’t think I’ll ever finish everything I want to finish but it doesn’t matter. Knowing that Heather is happy and knowing that AJ appreciated all the times that were so special to me and that I had a positive influence on his life is enough. If God takes me tomorrow he will be taking me after having given me the greatest of gifts, my children. Carry on Heather. Carry on AJ. I love you. ----------------------------------

This Beast Is Fast

2010-11-05T20:03:00.001-04:00

I held off writing this entry because is took me a while to deal with it. I thought I was preparing for another SIR Sphere treatment but on Wednesday the doctor who does it, having Tuesday’s CT scan in hand, called. He informed me that the treatment is now ruled out because of the risk/reward considerations. It seems the lesion/tumor in my lung is active again. Risking further liver damage is not wise because even if successful, the active cancer in the lung makes treating the liver rather useless. To further complicate things, the CT scan showed fluid in my abdomen which he suspects is coming from the liver. BAM. Things sure do change quickly. I still have an appointment Monday with the radiation oncologist who was to determine sphere dosage. I will keep that appointment just to see if she has any other ideas. Following that I have an appointment with my medical oncologist. I’ll see what she says, particularly about the fluid. I’m exploring clinical trials. Realistically, I think my only option is more chemo which hasn’t been working. If you are inclined to pray for me please pray that I have enough time left to finish the things I need to finish and that I have the strength to accept my fate and face it with courage. If you have only one prayer for now, let it be for Robbie LaSalle. He had his surgery and now faces a long, difficult recovery. Carry on. ----------------------------------------------------------

Busy Busy

2010-11-01T21:11:00.002-04:00

The last couple of weeks have been busy with doctor appointments. And it’s not going to end for a while. It looks like I’m going to have another SIR Sphere treatment but I wanted to explore other possibilities first. The SIR Spheres may damage the liver and the procedure was not as effective as I had hoped the first time so I wanted to make sure there was not a better option out there. As I already reported I saw a radiologist about external beam radiation and he recommended that be left as the last option. Last week I saw Dr. Gannon, a surgeon, to discuss resection of the liver and radiofrequency ablation (RFA). He ruled out resection (surgically cutting the tumor out) because it would require that I be off chemo for an extended period. The surgery itself would weaken my immune system. He said that between the lack of chemo and the diminished immunity the cancer cells in my body would have an opportunity to run wild. He felt that surgery would shorten my life rather than extend it. Regarding the RFA he said it appeared from my most recent PET scan that the tumor was too large for that procedure. It’s hard to say for sure and he’ll know better when he sees the results of a CT scan which I’m having tomorrow. Dr. Gannon serves on a tumor board with Dr. Nosher, the interventional radiologist who does the SIR Spheres. He said they meet later this week and will discuss my case with the CT results in hand. Between the two of them, and I suppose anyone else on the board, they’ll decide the best approach. But it looks like it will be SIR Spheres. That of course depends on the tests I have to have done to make sure I’m fit for it, beginning with the CT scan tomorrow. I have an appointment early next week with the radiation oncologist who worked with Dr. Nosher on the last SIRT. She’s the one who determines dosage. She has to clear me for the next treatment. Today I started a new chemo regimen. It’s referred to as ECF which is epirubicin, cisplatin and fluorouracil (5FU). But Dr. George left out the cisplatin. Cisplatin is what causes the neuropathy and other nerve damage including hearing loss. She said that because I’ve been on it (or another platin such as Oxaliplatin) almost continuously for two years, it’s time to take a break from it. I think she’s right. The most common side effect of the epirubicin is mouth sores. I have experience with mouth sores from my very first treatments. It was a walk through hell. But I’ll do it if I have to. I have to go back there Wednesday for hydration and to be taken off the 5fu pump. I have yet another appointment next week with Dr. George’s office for an interim blood test to make sure my counts are OK with the new regimen. I asked Kelly, a chemo nurse, if they had any other patients who have been coming as long as I have. She said “while they’re living?” I said well they can’t come when they’re dead can they? She said only on Halloween. So I’m doing a lot of running around to doctors. Oscar had two vet appointments mixed in with another one on Friday so he’s going through it with me. Last week my brother Tim and I had the lunch we agreed to have. It was awesome. There was some serious discussion, some laughter and some emotion. It was a great step towards fixing things between us and I’m hoping for more. Please say some extra prayers for Robbie LaSalle. Rob is the patient who has two forms of cancer, adenocarcinoma and small cell, in his gastric system. He has reached a point where the doctors feel surgery may work for him. Tomorrow he goes for pre-ops and he’ll have the surgery later this week. They’ll remove his stomach, part of the esophagus, and perhaps more. This is very major surgery. He’ll have a very long recovery. His life will never be the same. But the hope is it will be a life. So we need prayers to get him through the surgery, have as easy a recovery as possible, and for success. It’s a tall order but God can handle it. Carry on Rob. --------------------------

Some More Personal Stuff

2010-10-27T19:23:00.001-04:00

WARNING: If you’ve felt in the past that some of my personal notes are depressing I have two pieces of advise. First, don’t read this. You’ll probably find some of this depressing. Secondly, don’t be depressed. I’m not. I have my moments but I think that’s to be expected in this situation. Overall, I’m happy, content, lucky in many respects, and still enjoying life. I try not to write about day to day personal things because I don’t think anyone cares. Besides, my day to day life is pretty boring. But when I feel something that I think is directly related to my situation I think it’s important to share it. I think it may help someone else going through something similar to know they are not alone. Here are a few things I learned, realized or have experienced while on this journey. First a couple of things I’m experiencing: I am finding that my mind keeps bringing back all of the regrets I have in my life. I relive them vividly. I feel both sides of the situation, mine and the other person affected by it. I have learned from these things. Too bad I didn‘t learn them earlier. I’m finding that I’m very emotional now. I can hide it from most people pretty well but it’s very hard for me to talk to my children about anything significant without bursting into tears. When I’m alone I think a lot and a lot of things make me cry to myself. I think it’s better to be alone at such times than to dump depression on people. The only problem with it is that there’s nobody there to hold me. The last few days have been unseasonably warm. I’ve been able to sit on the patio and soak in some sun and warmth. Have I mentioned how much I love the sun? I think I’ve found a piece of God in the rays. It’s as if the sun rays are God’s arms. And they hold me. I realized that I have two heroes in my life; my father and my son. Both of them possessed or possess qualities I admire and wish I had. Both are men I wish I could have been. I have learned that God has been with me throughout this journey. He has guided me, comforted me and taught me. Last Sunday I learned the motto of the Special Olympics. It struck me because it summarizes my prayer to God about this battle. “Let me win but if I can’t win let me be brave in the attempt.” I’ll carry on. -----------------------------------------------------------

A Lot of Nothing

2010-10-22T19:38:00.003-04:00

I have a lot to report but none of it amounts to very much. I had a chemo treatment this week with the accompanying blood tests. The liver enzymes are still fluctuating, some up, some down. In general I’d have to say they’ve stabilized. Dr. Nosher’s, the doctor who did the SIR Spheres, assistant Donna said that the most important liver function measure is the bilirubin count. My bilirubin count has been within normal range all along so that’s good. Not so good is the CEA count which measures tumor activity. It went up again. It’s now at 57.5 which is just about where it was when we started this FOLFOX chemo regimen. Dr. George said it’s time to change the regimen but she’s having trouble finding a suitable one. In other words we’re running out of options. I took it upon myself to see a radiation oncologist, Dr. Cann. I was looking into the possibility of external beam radiation to my liver and possibly my lungs. Dr. Cann said that what’s going on in my lungs is very minor and did not recommend doing anything there at this time. He said he could radiate the tumor on my liver but the liver moves when a person breathes. The means they would have to radiate with a margin to may sure they got the tumor. That increases the risk of damaging good liver tissue. He recommended pursuing other possibilities for now and keeping this as a less desirable option. I also took it upon myself to again contact the Cancer Institute of NJ to explore the possibility of some kind of ablation to the liver, probably Radiofrequency Ablation or RFA. This involve inserting an instrument to the liver that thermally burns the tumor. I have not yet gotten to the right person to set up a consultation for this. In the meantime the wheels are in motion for a re-treatment with SIR Spheres. That cannot be done however until the middle of November because they have to wait six months from the last treatment. Yesterday I attended a full day continuing education seminar to maintain my real estate instructor’s license. I’m not sure why I did because I’ll probably never teach again. But I had a yearning to do it. I think I just want to make sure I die with credentials. One very good thing came from it. I saw my brother Tim. I knew he would be there. Maybe that explains my yearning. We agreed to have lunch together soon and that’s a beautiful thing. Not much to be encouraged about here but I still have some fight left in me. Carry on. -------------------------------------------------------------------

This Was My Everest

2010-10-10T17:51:00.000-04:00

Around August 2008, Terry and I went to Pyramid Mountain in New Jersey. There are several trails that lead to the top and of a rock formation known as Tripod Rock. It’s one large boulder (160 tons) that was deposited long ago by a glacier on top of three much smaller rocks. The boulder sits on top of the rocks, apparently defying gravity and our perception of balance. It’s a remarkable display of nature. I couldn’t make it to the top that trip. I simple ran out of energy, became exhausted, and we had to head back down the mountain. That was before I was diagnosed but it was one of my original symptoms that eventually led me to the doctor. In July of this year I was contacted by Paul Hamell. Paul is a fellow EC patient who underwent successful surgery almost three years ago. Paul is also the administrator of the ACOR list serve for esophageal cancer. For those unfamiliar with the ACOR list it is an email subscription service where patients write in questions, their history, responses to questions, or anything else related to a particular form of cancer. I have learned much from this service including the information about SIR Spheres. Paul and his wife are ardent hikers. Paul is on his local first aid squad. Paul saw this item on my bucket list so he offered to escort us to Tripod Rock. Paul and his wife were the perfect escorts so I couldn’t refuse his generous offer. We decided to wait until the Fall when the weather was more conducive and yesterday’s weather was perfect. We went. AND I MADE IT TO THE TOP!!! The hike was 20 miles round trip ascending 18,000 feet and took 9 hours to complete. OK I’m exaggerating. It was about 3 1/2 miles round trip ascending 500 feet and took 4 hours. That was with me stopping numerous time. I lost count at about 37. BUT THIS WAS MY MT. EVEREST! And I did it. Here's Paul and I at the rock Here's two shots that give you a better view of the phenomenon These two shots show some of the terrain we had to deal with It’s hard for me to express how good it made me feel to have accomplished this. And to be able to have done it while enjoying the company of two beautiful people made it even better. Unfortunately I can’t check it off my bucket list because Terry wasn’t there but it still meant a lot to me. Carry on. --------------------------------------

Time For Action

2010-10-07T17:11:00.001-04:00

Yesterday I came off the infusion pump which completed my 40th chemo treatment. I also received blood test results. The liver enzymes seem to have stabilized. They’re not going up or down. So although they are higher than they should be they are not getting any worse. Unfortunately however my CEA count is still rising. It went from 28.7 to 39.9. It’s still not as high as when I started this FOLFOX regimen but I think it’s clear that the benefits I enjoyed at first are beginning to wear off. That’s to be expected. There is no chemo agent known yet that kills adenocarcinoma cells. Sooner or later they mutate to become immune to the chemo. I just wish we could have gotten a little longer response from this one because there aren’t too many left. Dr. Nosher, the doctor who did the SIR Spheres treatment, has been away this week. Dr. George, my oncologist, plans to talk to him on Monday to explore other treatment possibilities. She was able to find out that his advise last week to wait about three more months and then we may be able to retreat, was not based on a possibility that that the remaining tumor may resolve itself. Rather, it’s based on the precautions they take to protect the liver. They like to wait at least six months since the last treatment. I am not content to wait. I have begun exploring the possibility of surgery to remove the liver tumor and/or external radiation. I should know more next week. I learned early in this battle that you have to be your own advocate. So I’m advocating for Jerry. This is a time for action, not waiting. Carry on. -----------------------------------------

This and That .... And It's Coming From Me

2010-09-30T13:35:00.005-04:00

My last post generated some curiosity about what my profession was so here’s the story. Trrrr says I ramble on too much and this is a good example. But there are other topics following this novel so there’s light at the end of the tunnel if you get through it. My father started a school for training real estate and insurance agents to pass the licensing exam. I worked for my father throughout my teen years. When I was a freshman in college, certain needs at the school and my desire to make that my career, resulted in my decision to discontinue my education and work there full time. My father passed away in 1979 and my brother Tim and I took over the business. Over the years I became knowledgeable enough in both fields to become licensed as both a practitioner and a teacher. Bear in mind however that passing a licensing exam, or teaching someone to do that, requires a theoretical knowledge of the subject, not a practical knowledge. In 2004 I sold my interest to Tim. The class I taught primarily was Title Insurance which involves a combination of real estate and insurance. In 1998 I had a student in class named Terry. Terry had been a legal secretary/paralegal for many years and was in the process of starting her own business providing legal support to attorneys. She needed her title insurance license in order to work independently doing real estate closings. Thanks to the expert instruction she received she passed her licensing exam. Terry approached me about teaching a course on how to do real estate closings and together we developed one that was offered and well received. Shortly before meeting Terry I had begun doing real estate closings on the side because I needed the money. The school business goes up and down with the real estate market and it wasn’t doing well then. I had also just gone through a divorce so money was tight. I was working with another licensee by the name of Carol Heiman so we were the closing team of Heiman and Wyman. I did not like working with Carol so when the opportunity to work with Terry came up I went with it. We became the closing team of Terry and Jerry. I try to make it a point to work only with people I rhyme with. Terry and I started a business practicing title insurance, specializing in real estate closings. Her practical knowledge and my theoretical knowledge complimented each other and eventually got to the point that they melded. I dedicated all of my working time to that business after divesting myself of my interest in the school. You may curious and the answer is yes. This is the Terry I eventually married. It was one of the best decisions I made in my life and one the worst she has made. Sorry that dragged on so much but I didn’t know how to abbreviate it. Now on to some other topics. In my last post I told you that Robbie LaSalle was at a turning point in his treatment. Rob is the patient who has two forms of cancer, adenocarcinoma in the esophagus (like me) and small cell cancer in the same place (very unusual). Rob was forced to change treatment centers because of insurance considerations and the new center is completely reevaluating his situation. He will likely soon began a new treatment plan. His wife Becky maintains a blog and she recently conveyed what the new doctor said. Keep in mind that my doctor avoids mentioning statistics and prognoses. Rob’s new doctor obviously does not. The following is from Becky’s blog. He explained to us that esophageal adenocarcinoma is ONLY curable with surgery. Without surgery there is a 99.9% mortality rate. So he wants to see if Rob is a candidate for surgery. We told him that we had been told that because of the small cell cancer Rob was not a surgical candidate. He said that is why they want to be SURE that he had small cell in the first place. He said that small cell cancer aside... if we don't do the surgery... Rob will live the rest of his live on some kind of chemo and eventually the cancer will become "chemo resistant". So you see just how difficult this disease is to beat. Yes, I know that’s a little negative and somewhat depressing but it is what it is. On a slightly more positive note, emphasis on slightly. I heard back from the assistant to Dr. Nosher, the doctor who did the SIR Spheres. Dr. Nosher said that one side of my liver obviously responded better than the other. We should wait three months, reevaluate, and then there’s a chance one side could be retreated. I’ve asked for some clarification and for him to call Dr. George as Dr. George requested it. Lastly, some people have expressed concern that my recent posts are depressing. I’m sorry for that. But keep in mind that this is a blog about a very unpleasant situation, Some of the things I say are bound to be unpleasant. You’re hearing from a person who is fighting a battle and facing death. I have feelings about all of it and I express those feelings. Most of the blogs out there are written by a caregiver. Mine is one of a very few where people can hear what it’s like for someone actually in that situation. I hope someday that helps another patient. In the meantime, let me assure you that I have no reason to think my death is near. I have no thoughts of giving up the battle. My fight and my will to survive are as strong as ever. With your prayers we will see the miracle I told you long ago you might get to witness. In fact, it’s been so long that I’m getting close to declaring it a miracle. Please pray for Rob too. Carry on. ----------------------------------------------------

I'm An Old Man

2010-09-27T22:53:00.001-04:00

I never finished college. I cut that short to continue a career I had already begun. I began my career at an early age. That decision worked out OK for me. I got married at a fairly early age, 21. I bought a house before that at age 20. My first child was born when I was only 24. Some people retire from a profession in their fifties or sixties. Some then go on to teach their profession. I retired from a profession involving teaching at age 49. I then went on to practice in the profession I taught. I’m not working now. I am receiving social security benefits (disability). I am living in retirement at age 54. The point is that my life has been somewhat accelerated. And I think I know why. I have very little energy these days. My physical activity is very limited. I have loss of hearing and chemo brain that sometimes resembles senility. After any limited activity I have aches and pains. I've lost most of my hair and otherwise look like I'm in my sixties or seventies. These things are all related to my disease or it’s treatment but nonetheless I feel like an old man. Chances are my lifetime will be shorter than most. But it won’t be any less fulfilling or rewarding. Just accelerated. Please pray for Robbie LaSalle. He’s at a turning point n his treatments. Carry on. ------------------------------------------

Quick Update

2010-09-22T17:49:00.000-04:00

I received the results from the blood tests drawn on Monday. My CEA count is still creeping up. It’s now 28.7, up from 25.1 two weeks ago. However, the counts that measure liver function have improved slightly. I’m concerned about the liver tumor that, according to the PET scan, has grown. I expected that the SIR Spheres would have taken care of all the liver tumors. Although one of them was resolved (disappeared), I don’t understand why the other one is thriving. I sent the scans down to the doctor who did the SIR Spheres but unfortunately he’s away until next Wednesday. It’s frustrating but I can’t complain. I’m lucky to be here and I’m loving life. Carry on. ------------------------------------------------

Sorry If I Misled You

2010-09-17T21:08:00.004-04:00

I’m afraid my last post left an impression that I did not intend. I think it came across as being negative, even giving some people the impression that I was depressed, perhaps giving up. Not at all. Yes, I definitely have some times when I am depressed. I can’t help it. But for now, and most of the time, I am determined. And I’m loving every day that I have. To me, the key points of what I was trying to say was that I’m very happy to have outlived my prognosis and the past two years have been among the best in my life. Yes, I wrote about indications that the end may not be far off but there are two things about that which are very important. First, I want to be able to recognize when the end is approaching. I am fortunate that I was not killed suddenly, depriving me of the opportunity to finish some things here on earth. Secondly, when the time comes I am ready. I am not afraid. I am at peace. For those of you that were concerned, those who left comments, and those who sent private emails, thank you. But please don’t worry about me. Next week I see the Chemo Kaiser again and I hope to have good news to report. If it’s not good I’ll figure out what to do next and keep fighting. Please, if you can, listen to the song in the background. It expresses how I’m feeling. Here are the lyrics to the first and last verses. May I suggest May I suggest to you May I suggest this is the best part of your life May I suggest This time is blessed for you This time is blessed and shining almost blinding bright Just turn your head And you'll begin to see The thousand reasons that were just beyond your sight The reasons why Why I suggest to you Why I suggest this is the best part of your life This is a song Comes from the west to you Comes from the west, comes from the slowly setting sun With a request With a request of you To see how very short the endless days will run And when they're gone And when the dark descends Oh we'd give anything for one more hour of light I would give anything for one more hour of light, including continuing the battle against this beast. Be happy everyone. Carry on. ------------------------------------------

Sweet/Bitter/Sweet

2010-09-16T18:30:00.001-04:00

Today it is the two year anniversary of my diagnosis. I can honestly say I didn’t think I would make it past one year. I have outlived my prognosis and for that I am very grateful. That is sweet. I “celebrated” the day the same as I did last year, by going to Mass, visiting the folks at my oncologist’s office to express my gratitude, visiting my mother to do the same, and of course letting Trrrr know how important she is to me. Unfortunately I was delayed somewhat because when I went to the oncologist’s office the Chemo Kaiser locked the doors and tried to force an early treatment on me. I had to pull the fire alarm to get out of there. The bitter side of this day is that although I’m happy to be at this point, I can’t help but feel like my remaining time is very limited. My last two chemo treatments were three weeks apart instead of the normal two. This was because a minimum of two weeks is required before the PET scan can be done and the scheduling just worked out that way. With the extra week off my CEA count went up from 20.7 to 25.1. So it seems I’m very dependent on the chemo. After the most recent treatment I had more gastric discomfort than normally. I vomited for the first time in two years of treatment. I’ve also been more fatigued than in the past. So it seems the cumulative effects of the chemo are getting worse. I fear that am nearing the time when I can’t live with it and I can’t live without it. Something has to give. More than medically, I am feeling spiritually that I am getting close to the end. I’ve spoken before about the learning process I think people go through at the end. More and more, I think I’m reaching that point of understanding, accepting, loving and forgiving. I really think I’m a better person than I was two years ago. I’ve sometimes wondered, as I know others have, why do good people die? What’s the point in going through this learning process, often late in life, only to leave this life. Well I think the answer is obvious. Where are good people supposed to go? They’re supposed to go to heaven. Lately I’ve been feeling the presence of people who have gone before me. They may be here to guide me. They may have been here for years and I never felt them before. But I think they may be preparing to escort me. Back to the sweet side. These past two years have definitely been among the best in my life. So much has happened and I’ve felt so much love that it’s all too numerable to mention. But what stands out most is my children. I don’t think I’ll get to see Heather get her dream job as I put on my bucket list but I have gotten to see her happy. Very happy. And that makes me feel very good. And then there’s AJ. I’ve always been proud of AJ but it was usually associated with watching him play sports. However that pride doesn’t come close to how proud I am of what he has done with his career and the man he has become. I don’t want to leave yet. In fact sometimes I think I’ll miss myself. But when my time comes I’m ready. Spiritually ready. I have a few mortal things I have to finish and I’ll be working on those. In the meantime every day is another gift. Happy anniversary everyone. --------------------------------------------------------------

Rolinda

2010-09-12T10:48:00.000-04:00

More than a year ago I received an email from Rolinda. She told me of her father Richard Martin who had died from esophageal cancer on the very day I was getting the ultrasound scan that led to my diagnosis. Since then I’ve felt a connection to Richard. It’s as if he handed off the baton to me and now I must continue the battle. Today is the second anniversary of Richard’s death. But for me, today is about Rolinda. Rolinda is Richard’s legacy. She has carried on his battle by supporting others. Rolinda follows my journey and periodically I’ll receive an email from her that usually expresses support or encouragement. Occasionally she’ll tell me what’s going on in her life or something funny that happened to her. I always enjoy hearing from her. Richard would be pleased and proud to know that his daughter is honoring him by remembering what he went through and trying to ease that burden for someone else. Actually, I believe he does know. I have felt Richard’s presence in my life and I’m sure Rolinda does too. I hope she feels it in a very strong, positive way today. Thank you Rolinda. Thank you Richard. --------------------------------------------------------------

OK is OK

2010-09-07T19:10:00.005-04:00

My PET scan results showed that all of the tumors in my lungs show "no metabolic activity" which means they're dead. This is how they were on the last scan. One of them increaed it size slightly. I asked Dr. George how it could increase in size if it was dead and she said it was probably just a matter of who read the scan, estimating the size differently than the last radiologist. The report emphasized however that "malignancy cannot be ruled out". The liver, which had been bombarded by SIR Sphere radiation showed perplexing results. One tumor that was present last time has been "resolved". Dr. George said that means it's gone. However a second liver tumor has grown slightly and it's metabolic activity has increased. I need to get a disk of the scan images down the the Dr. who did the SIR Sphere treatment to see what he days about that. The bottom line is that the liver still seems to be the only place there are active tumors. So the report was not great but not bad. It was just "OK". I guess that's what my comrades meant when they said "It's going to be OK". Or maybe they weren't even talking about the scan. I have to learn to listen better. Carry on. ----------------------------------------

It's Going To Be OK

2010-09-06T18:41:00.000-04:00

Last Wednesday I had a PET scan, the first one since my SIR Spheres treatment. It was a very unusual experience. During the entire three hours I was at the hospital I felt very detached from it, as if I wasn’t supposed to be there. Normally it is a very boring process, especially the time spent in the actual scanning machine. This time I was very relaxed and at peace and the time passed easily. Believe it or not, I felt the presence of Richard Martin, John Hawker, Travis Poll and Larry Alvey, EC patients who have gone before me and have inspired me throughout. I could also feel my father although he was not actively participating. It was like he had escorted the others to me or was just watching what was going on. My fallen comrades kept saying “It’s going to be OK. It’s going to be OK”. I don’t know if they were referring to the scan results or if they were telling me that it’s OK on the other side. These guys really know how to cover their butts don’t they? Either way it was very comforting. As I said I had the distinct feeling that I didn’t belong there. I was going through the motions because it’s important for the doctors to know what things look like, particularly the doctors who did the SIR Spheres who need data. I’ve had no scanxiety. Tomorrow I’ll get the results. I’m hopeful, but whatever they are I’m ready. I am at peace. It’s going to be OK. -------------------------------------------------

I Do and I Would

2010-08-29T12:36:00.024-04:00

On Friday evening my daughter Heather was married to Ed, the love of her life. They said “I do”. I was blessed to be able to walk her down the aisle and to dance with her to my song for her. I cannot describe the feelings of joy, love and pride that I felt. I will not only remember those moments for the rest of my life but I will feel them whenever I think of them. More importantly than my feelings though were Heather’s. I could see that she was extremely happy. Thank you Ed for making her so. I did pretty good holding back the tears as I escorted her to her man. But I lost it while we danced. Some of you may not know that Heather and I were estranged at one time. We didn’t even speak to each other for a number of years. Thankfully we began to mend our relationship before I was diagnosed. The mending process was accelerated after I was diagnosed. So Friday’s event meant that much more to me. I know that God doesn’t bargain. But if He had spoken to me two years ago and told me that I would get the opportunity to again have a loving relationship with my daughter, to walk her down the aisle and to dance with her at her wedding, but in exchange I would have to battle esophageal cancer, would I make that deal? I would. I love you Goose. -----------------------------

Creatinine

2010-08-24T11:30:00.002-04:00

I got the call from the doctor's offce. My creatinine level has come down. It's not normal yet but it's not rising and in fact is heading in the right direction. The nurse told me they checked with Dr. George to see if she wanted to do anything and she said no. Of course I know she really wanted to go out a celebrate that now she can give me more chemo. Carry on. ------------------------------------

Chemo Sucks

2010-08-21T09:05:00.007-04:00

Just when you think things are going well this lousy disease shows up with another weapon. I got a call from the doctor's office telling me that Dr. George (the Chemo Kaiser) is concerned about my creatinine level. Creatinine serum, measured as part of the standard blood tests, is an indication of kidney function. Mine's running a little higher than it should be. My concern is that I'm beginning to reach the point where by body can't take any more chemo. As the drugs attack the cancer cells they also attack healthy cells. Adenocarcinoma cells are very stubborn and there is no known drug to kill them. Unfortunately, healthy cells are not as strong and eventually succumb to the attacks. Dr. George's concern is that she may not be able to pump any more chemo into me. So on Monday I'll go in for more blood tests and based on the results we'll decide what to do. We may have to back off on the regimen that seems to have been working so well against the cancer. But nothing bothers me this week. I've lived long enough to make it to my daughter's wedding. Carry on. --------------------------------------------

Who Could Ask For More

2010-08-18T14:26:00.005-04:00

Just a quick update from the most recent blood tests. First the minor (hopefully) bad news. My liver enzyme counts are still elevated meaning my liver is not functioning at 100%. I'm still hoping that's normal reaction to the SIR Spheres. More importantly though, my CEA count came down further. It's now at 20.7. It was at 58.4 when we started with the FOLFOX regimen and has been coming down steadily since, indicating a good response to the treatment. To top it off, I've been tolerating the poison very well. What more can you ask for from a chemo treatment? Now I'll get an extra week off from treatment. Next week I'll be walking my daughter Heather down the aisle. Life doesn't get any better than that. Carry on. ----------------------------------

Esophageal Exhaustion

2010-08-11T20:32:00.001-04:00

There seems to be a condition that is prevalent if not universal among esophageal cancer patients. All seem to suffer from weakness, loss of stamina and reduced energy. Personally, I can’t do more than about 15 minutes of anything physical without needing a ten or fifteen minute break. I can’t even stand for too long without having to sit down. In my case, and with all the patients who are on chemo, I think it’s the effect of the chemo. It’s not only an immediate side effect, but a cumulative one. It seems to get worse the longer one is on chemo. If a patient is not a surgical candidate chemo is usually never ending other than periodic breaks. But there are patients who have had an esophagectomy and are no longer on chemo. Many have been off it for a long time and still do not have the energy they once did. Recently I discussed this with Paul Hamell, a patient I met who has had the surgery and has been cancer free for more than two years. He experiences shortness of breath and lack of energy when he does certain things. He pointed out that when part of the esophagus is removed, the stomach is pulled up to be reattached to the remaining part of the esophagus. This puts the stomach in the chest, occupying space that is normally exclusive to the heart and lungs. This has a crowding effect that makes it more difficult for the heart and lungs to expand thereby causing the symptoms described. So when it comes to energy and stamina it seems you are damned if you do and damned if you don’t have the surgery. I’ve learned to live with it. In fact it does have it’s benefits. Did you ever engage in a physical workout and reach a point of exhaustion but felt really good afterwards? I can do that in ten minutes! I have another round of chemo next week and then two weeks off from it. During the first off week I’ll be walking my daughter Heather down the aisle. I’m really looking forward to it but I think I’ll end up crying. During the second week I’m scheduled for a PET scan. Not only will it provide the normal information about how effective the treatments are but it will be the first measure of how successful the SIR Sphere treatment was. Speaking of PET scans, I recently started following the blog of Becky LaSalle. Her husband Rob was diagnosed last December with stage 4 small cell cancer at the GE (gastroesophageal) junction. The junction is where my cancer originated but small cell is a very unusual type for that location. In April it was discovered that he also has adenocarcinoma of the esophagus. Adenocarcinoma is the type that I have. It’s highly unusual to have two primary types of cancer in the esophagus. Rob is scheduled for a PET scan next week to see how effective his treatments have been. Please pray for him. He’s fighting a double battle. Carry on. ------------------------------

What I Don't Know; What I'm Learning; Medical Update

2010-08-03T16:18:00.008-04:00

The last couple of days have been very heart warming. Niki Jensen, a friend of the late John Hawker, left a comment on my blog. I didn’t know she read the blog. She said “more people than you know are cheering for you.” This was confirmed by my son AJ’s girlfriend Lindsey who I found out walked in my honor at the American Cancer Society’s Relay for Life. I didn’t know she was doing that but when I found out I was deeply touched. The picture above is from that event. Thanks Linds. Niki's comment was further confirmed today. I was talking to my Aunt Barbara in Massachusetts. There is a retired priest who lives in the same community as she. On Monday she asked that priest to say a prayer for me. He told her that the next day, he would offer his daily Mass for me. So yesterday there was a Mass said for me that I didn't know about. It’s comforting to know that there are so many people supporting me, even when I don’t know it. Comments left by Tracy Hawker, Johns widow, and Angie Poll, Travis Poll’s sister-in-law, supported my belief that animals have a guaranteed place in heaven. Mandy Poll’s (Travis’s widow) mother Judy commented with an explanation of why it is natural to fear death even if we have faith in God and His eternal reward. All of these comments make so much sense to me that I have to accept them as truth. My learning continues. On Monday I received chemo treatment #35, the third FOLFOX treatment. Today I received the test results from the blood drawn that day which is reflecting two treatments. The way I received the results was unusual. As soon as I walked into the chemo lounge, Patrice, the nurse immediately came over to me with a copy of the report and a graph of my CEA count. I think she was excited to give it to me. The CEA count came down again, to 29.8, extending the good response we're getting from the FOLFOX. To make it even sweeter, I went through the last two weeks with almost no side effects other than some jaw pain and touch sensitivity to cold things. Both of those are common side effects of the Oxaliplatin. I still have very low energy and stamina but that has become a way of life. I can't ask for any more at this stage. So I carry on. Right now it's a little easier. --------------------------------

Larry Alvey

2010-07-29T20:31:00.005-04:00

Yesterday Terry and I went to her mother’s house which is now vacant. We had to move some things out, do some cleaning and weeding and try to make the house more saleable. I couldn’t help but think of Larry Alvey while I was doing it. Larry made sure that everything that could be done for his family was done before he left them. He wanted to make sure everything was in order. The last thing that was weighing on Larry’s mind was cleaning up a house that he and his wife Marilee had to dispose of. It bothered him that he was no longer able to do that. His friends organized a group that went and worked on the house for several days and on Tuesday the work was completed. And then Larry passed. Larry was diagnosed with stage 4 esophageal cancer in May of 2009. His battle was similar to mine, including SIR Spheres treatment. I couldn’t help but wonder again today why am I still here. I’m eight months beyond Larry and yesterday I was able to do physical work. I had to take many breaks, not being able to go more than about 20 minutes without resting. But that’s not bad considering. But why me? Larry was one of the finest men I ever “knew”. He was a captain for American Airlines, flying 777s. We was doing a job he loved. He raised good Christian children and put them all through college. He took care of his wife, making sure she will be ok financially. He not only practiced his religion, he lived it and shared it wherever he went. His writings in the blog he maintained with Marilee taught me something very important about God. I haven’t discussed it specifically with anyone yet because I don’t fully understand it. I had hoped to discuss it with him one day and learn more. So why me? Larry deserves to be here more than I do. On the other hand, Larry deserves Heaven more than I. Larry fought his battle with strength, dignity, love and faith right to the end. Larry or Marilee once commented that they were following me on this cancer journey. That was wrong. Larry was leading the whole time. I know he’ll continue leading me by his memory and his example. I think I may even hear from him now and then. Carry on Captain. -------------------------------------------------------

Why Am I Here? Where Am I Going? How Do I Get There?

2010-07-26T15:49:00.002-04:00

Everybody wants to go to heaven. But nobody wants to die. Well then how do you get there? Unfortunately we have to die to get to heaven. I am in the process of accepting that. I’m still having trouble with it but I’m getting there. Unless you are killed suddenly and unexpectedly, I think dying is a process. Even people who die suddenly probably go through the process. It’s just not as obvious. I think that when that process is complete, it’s time to go. I think that the process consists primarily of achieving levels of understanding, loving, accepting, forgiving, and being at peace with yourself and your God. It has been said that before you die your life flashes before you. Recently I transferred all of the family videos I had on VHS tapes onto DVDs and gave them to my children. In the process I viewed all of those tapes. This wasn’t exactly a flash but I certainly relived those times in my life. It wasn’t simply seeing those times again. It was feeling those feelings again, thinking about how the children have grown and matured, thinking about what I have learned since then. I think that learning is an important part of the dying process. I believe I have learned a lot recently. I have a better understanding of why some things happen in life. I think I have more tolerance for people than I had before, more compassion. I see animals differently now. I always loved animals but now I see them more as creatures of God. It’s weird, but I seem to feel them as much as see them. I have heard people say that animals are “lesser” beings than humans. They lack free will and therefore they cannot make choices so they cannot go to heaven. I don’t agree. I think animals are automatically going to heaven. I have grown spiritually. I pray more than I used to but I also talk to God. And now I pray and talk to Jesus and Mary which I never did before. I have come to think that just as important as talking to God is listening to Him. But that’s much more difficult. When you think about all of the things that happen to us and all the things that happen around us, it’s not easy to understand what God is saying to us. I’m not a good listener. But I’m learning. I’ve been trying to understand what God is telling me by allowing me to outlive my prognosis. There’s a reason I’m still here but I don’t know what it is. I think I’ll be here long enough to walk my daughter down the aisle in August but that’s not why God has left me here. That’s a gift he’s giving me along the way. I would love it if the reason I’m here is to save a life. But I know I don’t get to pick the reason. I have to keep listening and try to hear His message. When I was first diagnosed Terry and I made sure some financial things were in order. I tried to teach her about some household things that she was not familiar with, things that I always took care of. I think she’s forgotten much of what I told her. It’s been almost two years. Lately we’ve been thinking more along the lines of selling the house and downsizing. That will make it easier for her when I go. That’s one of the advantages of knowing you don’t have too much longer, an opportunity to plan. I believe in God and I believe in Heaven. I believe that there is an eternal reward for us when we die. But if that’s true, if I truly believe, I should be eager to go whenever my time comes. I’m willing to accept it but I’m not eager. Maybe my faith is not strong enough yet. So I’ll just continue living as long as God let’s me, trying to learn along the way. I’ll continue the process. But maybe I’ll be a little bit of a jerk now and then so I don’t get there too quickly. Carry on. ----------------------------------------

YAY FOLFOX!

2010-07-22T16:13:00.004-04:00

Today I got the results from the blood test that was taken Tuesday, before the second treatment of FOLFOX. So the test reflects one treatment. My liver enzymes are still elevated. Hopefully that's from the shock to the liver from the SIR Spheres and the levels will gradually go back down. The good news is that my CEA count has come down from 58.4 to 41.1. That's a decent drop. The CEA count is used to monitor tumor activity. Although it's not considered 100% accurate, my count had been rising. Turning it around is significant. It's early in the game and there's no telling if or how long this regimen will continue working but it's a good start. It should buy me some more time. I'm very thankful. Please continue praying for Larry Alvey. He's at a very difficult point in his battle. Carry on. --------------------------------------

The Amazing Club That No One Wants to Belong To

2010-07-18T21:28:00.001-04:00

I belong to a “club”. It’s members are all the people who have esophageal cancer or have been touched by it. They are all remarkable people and there is definitely a special bond that we all share. Over the past two weeks I saw two more examples of it. I was contacted by Travis’s mother-in-law, Mandy’s mother Judy. She is sending me a supply of a nutritional supplement that she had obtained for Travis. What a kind gesture. What a kind person. If you’ve read any of Mandy’s blog I’m sure you got a feeling for what an amazing person she is. It’s easy to see where she got it from. I was also contacted by Paul, another patient. He’s from close by in New Jersey. Paul told me a little about his story. He’s doing very well. Paul told me that he read my blog and noticed that one of the things on my bucket list is to get to the top of Pyramid Mountain. Since he and his wife are avid hikers, Paul offered to take Terry and I up there, providing support as necessary. We hope to do it in the Fall when it’s a little cooler. You see why I say this is an amazing club. These are two strangers reaching out to help me. The chemo I started almost two weeks ago has been rough. Just being on the pump for two days is a pain in the neck. Early on in the cycle I was very constipated. That lasted about two days. Then there was about a week of diarrhea. Through all of this I was very weak, slight nauseated and had no stamina. It wasn’t until yesterday that I felt normal again. Of course normal is not what it what it was two years ago but it’s my new normal. On Tuesday I start the cycle again. Please pray for Larry Alvey. He’s not doing well right now. Carry on. -------------------------------------------------------

Let's Try This

2010-07-09T19:00:00.002-04:00

On Wednesday I received chemo treatment #33. We began a new regimen referred to as FOLFOX. It includes the chemo agents FOLinic acid (leucorin) Fluororuracil (5-FU) and Oxaliplatin. I am still getting Herceptin for dessert. Herceptin is the breast cancer agent that is supposed to have some effectiveness for people whose tumor tested positive for the HER2 gene. The original regimen I was on, which gave me a nice long response, called DCF consisted of Docetaxel (Taxotere), Cisplatin and Fluorouracil (5-FU). Leucovorin was used to enhance the effectiveness of the other agents. I began getting Herceptin about half way through this regimen. The regimen we just ended consisted of CPT11 (Irinotecan) and Cisplatin topped off with Herceptin. There was very little if any response from this. Notice the similarities in these cocktails. Cisplatin was used in the first two. The third includes Oxaliplatin which is another “platin” similar to Cisplatin. Leucovorin and 5-FU are both contained in the first regimen as well as this new one. Herceptin is consistent with all of them. DCF, the first regimen, is considered by most to be the standard frontline treatment. It’s response rate is 60% and thankfully I was in the 60%. I don’t know the response rate for the others but I believe they are not as good. We’ll see. Doctor George said there are several others we can try. The expected side effects from the FOLFOX regimen are the usual nausea, fatigue and weakness with a strange additional one. Some patients develop a severe sensitivity to the touch of anything cold whether it be something cold coming into contact with she skin or something cold taken orally. Taking something from the refrigerator feels like an electrical shock. Drinking something cold makes it feel like your throat is closing up. I did not experience this but they say it is a cumulative reaction so I have something to look forward to. The sensations are caused by the Oxaliplatin’s effect on the nervous system. It is the Cisplatin, the other platin I’ve been on for so long now, that causes the neuropathy, another effect on the nervous system. Gotta love those platins. The 5-FU component of this regimen is administered over a 48 hour period so I’m using the infusion pump again. Today I went back to the chemo lounge to be unhooked from the pump and get a little hydration. I got the results from the blood that was drawn and tested on Wednesday. No CEA test was done but the liver enzymes came down a hair which is good. Also my creatinine, a kidney function indicator, is back to within normal levels. That’s very good because I was concerned. Long term chemo can damage the kidney and it could be something that makes continued chemo dangerous. I’m glad to know I can have more! Carry on. -----------------------------------------

Angels Among Us

2010-07-05T19:59:00.003-04:00

When I was first diagnosed my daughter Heather enrolled me in a program called Chemo Angels. It’s an organization of people who send cards, notes and/or occasional small gifts to people going through chemotherapy. Patients are assigned one or two angels who communicate this way on a weekly basis. There is no obligation or even expectation that the patient respond. Since that time I’ve received hundreds of cards from dozens of angels. Each one brings a smile to my face. It’s a bit of sunshine that often arrives during a dark time. For more than a year now there’s been an angel assigned to me by the name of Chris. Chris has sent me a card faithfully at least once a week and each one contains a little bit about what’s going on in his life with his wife Tricia. He often comments about what he read in my blog. And each time he offers words of hope, encouragement and inspiration. Chris is a genuinely good person. He works with children as a guidance counselor and you can tell he is very well suited for it. He has donated more than twenty gallons of blood in his life. That takes commitment. Chris has helped me through this battle. If you’d like to sign someone up for the Chemo Angel program here’s the link. Chemo Angels Than you Chris. Thank you Angels. -------------------------------

Bits and Pieces

2010-07-01T18:49:00.001-04:00

Well we got a short reprieve from chemo and the worries of cancer. Last week was my scheduled week off from treatment. Over the weekend Terry and I went down to Atlanta for our good friends Denis and Carol’s daughter’s wedding. Christy Ann was a beautiful bride and we thoroughly out time there. The only disappointment was seeing this girl who, since she was a child has promised she would marry me, marry someone else. Oh well. Right before we left on Sunday we participated in a private Mass at their home, offered by another long time friend, Father Flanagan. It was a perfect ending to a lovely trip. And then on Monday it was back to the chemo lounge. Lately they’ve been having me come back for hydration because my creatinine level is high. This is a reading on kidney function. So I went back on Wednesday. That’s when I got the results from blood tests taken on Monday. They were disappointing. My liver enzyme measures are still creeping higher. I’m hoping that’s due to the radioactive assault on the liver. We’ll see. More concerning is the fact that the CEA count is also still creeping higher. This is usually an indication of increased tumor activity. The actual number was 58.4. Normal is up to 4.7. Three weeks ago it was at 43.7. In January it was 21.5. Last August it was as low as 3.7 but at that time the lab was using a different methodology for testing so it’s hard to compare. Normal at that time was up to 2.5. Dr. George interpreted the reading to mean that this chemo regimen is not working. So next week we’ll change it up again. I’ll go into more detail about the new cocktail next week but for now I can say that it includes going on the 5fu pump again. Or as Larry Alvey would call it the 5Fme pump. I can hardly wait. For now I’m looking forward to the time until then. Terry’s niece Michele and her family are flying in from Arizona and we will spend some time with them. Our friends Linda and Phil invited us to a barbeque. The weather is supposed to be nice which will allow me to work outside a little. I plan to do it all. Carry on. -------------------------------------------------------

Travis Poll

2010-06-21T19:55:00.005-04:00

Travis passed away on Friday. Saint Joseph, the patron saint of the dying, was watching over him. He passed beautifully while in his wife Mandy’s arms. I never spoke to Travis. I never heard him speak or read anything he wrote. But I feel I knew him. I knew him through Mandy who was good enough to share their esophageal cancer battle through her blog. Through it Travis has been a part of my battle. He was an example to me both in the fight and in life. I believe I mentioned in previous blog posts that Travis was diagnosed after I was and that he was 37 years old. I was wrong on both counts. He was diagnosed about 7 months before me and he would have been only 36 on Saturday. His family and friends celebrated his birthday Saturday with cake, ice cream and children playing games, including the four beautiful children he left behind. They sent 36 balloons up to Heaven. Rest in peace my friend. ---------------------------------

Let's Continue

2010-06-19T08:40:00.009-04:00

Last week was not good but it was salvaged somewhat on Friday when Larry Alvey finally got approval for the SIR Spheres. Amazingly, he had the mapping done on Tuesday and then both sides of his liver were radiated on Wednesday. So a process that stretched out almost two months for me was completed in 5 days for him. They must be either way behind us or way ahead of us out there in Denver. Since he had it done at one of the first places in this country to do SIR Spheres by one of the pioneer doctors I'm guessing they're way ahead of us. From now on I'll get all my SIR Spheres in Denver. I'm in kind of a mental holding pattern now. The news about John and Travis has numbed me. I feel like I don't want to even think about cancer, treatments or test results. On Tuesday I completed my 31st chemo treatment but chemo treatments seem to be very routine now, part of life. I am enjoying the great weather, working in the yard, spending time with family and just living. Terry's been having a problem with a tooth she had some work done on. I've been more worried about that than I am about this other garbage. I think that's an indication of how I've suppressed thoughts of cancer. So I'm going to continue in my little world of "fugettaboutit". I'm going to just live for a while. Carry on. -------------------------------

Cancer Sucks. Esophageal Cancer Sucks More.

2010-06-11T10:03:00.002-04:00

This has been a terrible week. On Tuesday I got blood test results. My liver function readings have deteriorated somewhat. The CEA (tumor marker) reading shot up, the opposite of what I expected. John Hawker passed away on Wednesday. Yesterday hospice was called in for Travis Poll. He's in a lot of pain. It's easy to get discouraged. ------------------------------------------

John Hawker

2010-06-09T08:17:00.003-04:00

This morning I received a message informing me that John passed away at 4:00 am. At this point, it is welcomed. He went slowly and endured a lot. Now he is at peace. John and I spoke several times. He was easy to talk to. If I brought up the topic of what we were going through he spoke of it frankly. Most of the time we just talked about what was going on in our lives as if nothing was wrong. John fought this disease for almost eighteen months to the day. He taught me how to fight it with dignity. John was strong all the way. He resisted going on disability. He traveled to be with friends and family. John taught me how to live life in spite of the disease. John taught me that I could love someone I never met. Hey Dad. Meet my friend John. ----------------------------------

Team Alvey

2010-06-06T17:03:00.002-04:00

In March I corresponded with Lindie Kuskie who was researching various treatments for her father, Larry Alvey. Larry was diagnosed with stage 4 esophageal cancer in May of last year. After battling the disease for almost a year, the chemo regimen Larry was on eventually became ineffective. Larry’s disease forced him to take an early retirement. He was a pilot for American Airlines. Larry has a very large number of friends and family members praying for him and doing whatever they can to help him through this. He and his family refer to these people as “Team Alvey”. I’m proud to be a part of the team. Larry and his wife Marilee have the strongest faith I have ever witnessed. I read their blog, which they maintain jointly, and through it they have taught me much. They have reinforced my faith. Like mine, Larry’s doctors never recommended SIR Spheres. If it had not been for Lindie’s research it most likely would never have been considered. Lindie learned of my attempt with SIRT as well as that of Richard Dickerman whose story led me to the treatment. Because of Lindie, Larry consulted with second team of doctors and, as was the case with me, the second team felt he may benefit from the procedure. It illustrates how patients have to be their own advocate and take an active role in their own care. It also shows the power of the internet which allows us to learn from other people’s struggle. Either Larry or Marilee, I don’t remember which since they both write the blog, once put it nicely by saying “It's so much better to go through struggles if you can help someone else with theirs because of yours”. Unfortunately, Larry is in the midst of the final appeal process with his insurance company to get them to approve the SIRT. Larry has asked for prayers to that end. If you are kind enough to offer prayers for him then you too can be a member of Team Alvey. Here is the link to Larry and Marilee’s blog but I think you have to register to read it and I believe that upon registering they have to grant you access to it. I’m not sure of the process because Lindie registered me. Larry and Marilee’s blog As for me I will see the Chemo Kaiser tomorrow and probably begin chemo again on Tuesday. I took it upon myself to make the appointment. I’m a little nervous about having been without systemic treatment for so long. After more than two months without it I feel rejuvenated and I think my body can tolerate more now. In August I should have a another PET scan and we’ll find out how effective the SIRT was. In the meantime blood tests may tell us something via the CEA count and hopefully they’ll show that my liver is still functioning well. Carry on. ------------------------------------------------------------

Special Prayers

2010-06-04T15:59:00.003-04:00

It saddens me greatly to have to ask for special prayers for my friends John Hawker and his wife Tracy. We have to pray that John has a peaceful passing. I know that he is surrounded by many friends and family which is an environment he loves. And love is all around him. I feel him every day now. ----------------------------------

Les Coleman

2010-05-29T09:41:00.004-04:00

Leslie Coleman fought a seven year battle against esophageal cancer during which he received 100 chemotherapy treatments. He was a frequent contributor to a list serv that I subscribe to. He always contributed in an open, informative and upbeat way that helped many other patients in their battle. Les was kind enough to reply directly to me in February when I asked him about the chemo agents he had received over the years. On April 29th Les sent his last message to the list serv informing everyone that he was in a lot of pain and entering hospice. Les died on Thursday. It's strange that you can feel so close to someone you've never met but I know a lot of people feel that way about Les, myself included. Rest in peace Les. -----------------------------------

Bucket List x 2

2010-05-25T18:51:00.002-04:00

Last week I had plans with my mother to plant our spring flowers. Unfortunately, the Saturday night before we were supposed to do it, she fell and broke her arm. It was impossible for her to participate so I went to the nursery, bought the flowers, and went to her house to plant them where she designated. My sister Anne, and my mother’s companion Paul helped. Then I came home and planted mine. It wasn’t according to plan, but this did represent the second year my mother and I planted flowers together. It was fulfilling that item on my bucket list for the second time. I didn’t think I’d make it to that first Spring to do it once. I have a lot to be thankful for. On this Saturday just passed Terry and I went to our friends Phil and Linda’s house to celebrate their son’s birthday. Yesterday we went to our friends Bruce and Rhonda’s house for a visit. We enjoyed both visits. More to be thankful for. It’s been more than two months since I’ve had chemo and I’m feeling great. But last night there was a helicopter hovering over our house with a searchlight shining down. I think it was the Chemo Kaiser looking for me. Carry on. --------------------------------------------------------

The End ...... And A Beginning

2010-05-14T15:00:00.001-04:00

Yesterday I had the final SIR treatment and I am thrilled that it is over. Although it’s a minor inconvenience in the grand scheme of things, the actual process on the treatment days was agonizing. Most of it was very tolerable, including the severe pain when the spheres are actually injected. But I absolutely hated laying on my back and having my movement restricted for six hours. And yesterday’s “recovery” nurse was particularly tough. She didn’t cut me any slack at all. The day went pretty much the same as last time except I think we got out a little bit later, slightly after 7:00 pm. We had been there since 7:00 am. One thing I didn’t mention last time is that they gave me a prescription for a six day dose of steroids. I don’t understand why because I’m already a hunk. Dr. Nosher, the doctor who performed the procedure, stopped in near the end of the day to fill us in on what to expect next. They’ll be some post procedure check ups in a couple of weeks but those will be to make sure no liver damage or other harm was done. We won’t learn about the efficacy of the treatment for about three months when a PET scan is performed. It takes that long to kill the tumors. In the meantime we’ll probably get some indication from CEA levels in blood tests. The count has gone down slightly since the last treatment but I don’t know how significant that is. I’ll probably go back on chemo in about three weeks. Other than some discomfort around the incision area I have no after effects. Last time there was some nauseousness. At the risk of repeating myself, I’m very glad it’s over. And I’m grateful to have been given the opportunity to hopefully eradicate some of this disease. In the holding/recovery area there was another patient who was very upset. We could overhear some of her conversation with the nurses. She was there to have a port-a-cath implanted. This told us she had cancer. Later in the day Terry said she was scared of the chemo treatments that lie ahead of her. She was concerned about what this device that was now inside her would look like when it healed. She was obviously at the beginning of her battle with cancer. She was going through what I’m sure every cancer patient goes through at the beginning of their battle, fear, anxiety, confusion and hopelessness. Terry said she was crying so she invited the lady over to my bedside to let her look at my port-a-cath. Later, when we could see she was getting ready to leave I asked terry to have the lady come in again. She did. We held hands as I told her I would pray for her. She smiled and said she would pray for me also. And then she left to begin her battle. Please pray for all of us. ------------------------------------

Perspective

2010-05-08T21:10:00.000-04:00

It seems that wherever I go these days somebody comments about how good I look, referring to my health. Indeed my eyes don’t stream tears anymore, my fingernails have grown back, I’ve gained some weight and I have some hair, even though it is Bozo the Clown hair. And I feel very good. Based on how I look and how I feel you’d never know I’m walking around with a terminal disease. Sometimes I forget myself. And this is good because I want to be able to live life as normally as possible. But then something comes up that I have to deal with like a treatment or doctor appointment and I’m reminded of the reality. Now that I have been dealing with this illness as long as I have, about twenty months, I have seen many patients pass on from it. Many of them have lasted a much shorter period of time than I. That’s discouraging. But then I see patients like Mark Richardson and Dick Dickerman who were both stage 4, not candidates for surgery, and both have passed the five year mark. That’s encouraging. But then I read about someone like Les Coleman who has made it to seven years but is now near the end of his battle. Sometimes Terry and I disagree about how we should handle things. She tends to not want to make plans too far into the future because I might not be able to participate because of a treatment or q reaction to a treatment. I tend to think we should go for it. Other times I’ll talk about something like estate planning with a short time frame in mind and she’ll tell me I could outlive her and everyone else. I try to keep things in balance, in perspective. I think the perfect balance is to live life as fully as possible because I probably don’t have much time left. But that doesn’t stop me from fighting as hard as I can and maintaining hope that miracles can happen. I guess I try to be realistically positive or positively realistic. It is a tough balancing act. Last Monday I had a CT scan ordered by the SIRT team but I must confess I don’t know why. I don’t know if they were looking for tumors, checking out the work they did or mapping out the next procedure. Frankly I don’t care. I’ll find out soon enough. I saw Dr. George the Chemo Kaiser yesterday. Her office called and said she would like to check me out because she hasn’t seen me for a while. That made me suspicious and sure enough when I walked into her office three masked men jumped me a tried to hook me up to the chemo pump. I was able to fight them off and I told Dr. George that if she wanted to see me she’d have to lay off the chemo for now. She reluctantly agreed and just did a routine examination. Everything checked out but that really doesn’t mean much except that my heart is still beating and my lungs are still taking in oxygen. Dr. George did mark her calendar for exactly two weeks after the next SIR treatment which is when I can start chemo again. I suspect I’ll wake up that day to find her on my doorstep with tubes and needles in hand. Next week is the final SIR treatment. I can hardly wait. Carry on. ---------------------------------------------------------

Why?

2010-04-29T19:57:00.002-04:00

I have been dealt a hand that most people would consider unlucky. I agree. And I must admit that I often fall into the “why me” trap. But as I have said in the past, I’m really luckier than most people in my situation. There are times when I wonder why I have been spared much of the pain and suffering that others go through. Why am I still here when other patients die much more quickly? Sometimes I feel guilty about it because I think I am less deserving. I’m feeling that way now. Two of the patients I follow closely, John Hawker and Travis Poll are both younger than I am. They were both diagnosed early last year, more recently than I. Both were candidates for surgery, unlike myself, which indicates their disease was not as advanced as mine. Both underwent surgery and the long difficult recovery that follows. Both were doing well at first. But now that has changed. John and Travis are both going through very difficult times right now, much more difficult than me. I know I’ll probably go through the same thing at some point and I don’t think I’ll be as strong as them. I’m having a tough time being strong as I watch them. I feel close to them. Carry on brothers. Tracy’s Blog (John’s wife) Mandy’s Blog (Travis’s wife) ------------------------------------

Check It Out and Check It Off

2010-04-21T17:46:00.007-04:00

Last night my son AJ graduated from the police academy. He has been a corrections officer for the last two years and having completed this program will further his career. I cannot adequately express how I felt as I watched him march in, stand at attention, salute and receive his certification. The best way I can describe it is overwhelming pride and love. They showed a brief video of some of the training they went through over the past fourteen weeks. It was very impressive. I can’t wait to see the full length version that will be available in July. AJ gave me a commemorative sweatshirt designed by one of his classmates. I wore it all night when we got home. Check it out. Yes that is a real gun he’s packin’ and yes it makes me a little nervous but he’s responsible and can handle it fine. I can now check off another item on my bucket list. I finally got to see him in his uniform. It was special. ---------------------------------------

I'm Radioactive

2010-04-14T20:01:00.004-04:00

After posting this entry I read Mandy Poll's blog. Her husband Travis is suffering from esophageal cancer and they had a very difficult day yesterday. Before reading about my day please take a minute and pray for the Polls. Mandy's blog I finally received phase 2 of SIRT yesterday. Terry and I made the early trip down there and I was admitted, tested, hooked up to IV’s and ready to go by shortly after 8:00 am. Unfortunately they had an emergency case that they took before me so it was about 10:30 by the time I went to the procedure room. That prolonged our day by a couple of hours. The mechanics of the procedure were almost identical to the last one except that they used the catheter through my femoral artery to insert the spheres. When the spheres actually hit my liver there was severe pain in my upper abdomen and lower chest. I thought I was having a heart attack. When I mentioned it to them they said it was normal and quickly shot me up with a pain killer. I wish I had been told to expect it. This time the pressure to my groin was applied by a woman who probably didn’t want to be there. I don’t blame her. She applied only fifteen minutes of pressure and when she stopped I started bleeding again. After five or ten minutes more it was under control but they did watch it more closely than the last time. Then there was 45 minutes to an hour of nuclear pictures and back to the holding area. And I didn’t pee through the whole thing. At least not that I know of. I had insisted on taking the pre-meds dry and made a point to hit the bathroom right before going in. It worked. The six hours of laying on my back were agonizing; worse than the last time. I did OK until about the last hour and a half but I was experiencing pain and nausea. They began to gradually raise the head of the bed to give me some relief. When it was over I walked the eight steps to the bathroom and got dressed. Terry and I began the long walk through winding corridors to leave but after a short distance I felt nauseous and light headed so I had to stop. Terry returned to the holding area to get a wheel chair while I waited. I felt that I had to sit down so I started wondering the halls looking for someplace to sit. I ran into a hospital worker who could tell I was in trouble. He helped me to a nurses station to sit. By then Terry was back with the wheel chair but couldn’t find me. The hospital work tracked Terry down and brought her to me but by then the radiology nurse was looking for us. The hospital worker found her, led her to us, and after this little Keystone Cop adventure we were on our way. When we got home I went to bed and slept for about fourteen hours, none of it on my back. The spheres were injected into only the right side of my liver. We have been given two different reasons for this, both of which make sense. First, there is a possibility the liver will be damaged. If that were to happen, I could live with only the left side functioning. In that case they would not do the left side. The second reason, which was given to us by a different doctor, is that doing both sides at once would require a higher dose of radiation at one time. It would be much more toxic to the body. I will go back in about 30 days after a CT scan in about two weeks, to have the left side done. There are some post procedure restrictions. For three days I cant’ be close to anyone for more than 30 minutes. I had to send Oscar to stay with his cousin Cheryl because he’s always on my lap or sleeping with me. After using the toilet I have to flush twice. I have to postpone getting pregnant. I’m anxious to get it done and find out if it helps. Carry on. ---------------------------------------------------------------------------

Prayers Are Needed

2010-04-11T20:53:00.005-04:00

Please pray for my comrade in battle, John Hawker. He is experiencing severe pain. And maybe you would be so good as to also pray for his wife and caregiver, Tracy. Tracy's Blog Thank you. -----------------------------------------------

Maybe This Wasn't Meant To Be

2010-04-07T19:12:00.006-04:00

Anpother delay in SIRT. It seems that although I was told it would be on April 8th, when they tried to schedule all the parties two of the doctors were unavailable. They scheduled it instead for next week and never told me. If it had not been for a chance phone message Terry and I would have wasted another trip down there tomorrow. I had to call the onclologist's office up here to rearrange the plan for the shots I'm giving myself to boost the white blood count. Yes, this is an inconvenience and a bit of a disappointment but I really believe it is God's way of making sure the timing is right. Maybe I need more time off from chemo. Maybe it's best if my blood gets more time to rebuild. There's no question that God has guided me well so far. I am not going to question Him. So we'll carry on. While we wait. -----------------------------------------

Good News Bad News and a Save

2010-04-05T17:46:00.001-04:00

First, some good news. This past weekend was awesome. Friday was Terry’s and my anniversary. We celebrated by going out to dinner with our good friends Linda and Phil. Their anniversary happens to be the day before ours. It was good food, good company, and a good reason to celebrate. We had a great time. On Saturday I got to speak with John and Tracy Hawker. It was the first time I “met” Tracy. She is as inspiring as her husband and a pleasure to chat with. John and I have spoken before. His strength is amazing. I knew he had returned to work very quickly (one month) after surgery last year but on Saturday he gave me some of the details. He continues to work today even after all he’s been through. Some people have suggested that he stop working and go on disability but John pushes on. His nurse has been giving him a hard time about driving while on medication. People often tell me I should take it easy, not do so much, drive so far etc. John and I discussed this and we both agreed that we are not fighting to live so we can sit around and do nothing. It was very nice to be able to talk to both of them. On Sunday we celebrated Easter with Terry’s mother, two sisters, niece, nephew and their families. Terry’s sister Jackie always prepares a feast for our consumption. It’s always a pleasure to be with them and this was no exception. On top of everything, we had great weather. I worked outside all three days and soaked in the rays. This weekend easily makes the list of “Happy Times With Cancer” Some more good news; I think the time off from chemo is already helping. My stamina is increasing, taste buds are improving, and I think there may be a very slight improvement with the neuropathy. The bad news may, hopefully, be only in my mind. I can’t help but think that as the rest of my body recovers from the effects of chemo, so does the cancer. I don’t want to give it a chance to come back. Also, the pain in my elbow won’t go away. It’s a pain I never felt before and since I never experienced bone metastasis before I fear that’s what it is. Here’s the save. I took it upon myself to call my local oncologist’s office and request a blood test. I wanted to make sure all was well before making another long, early morning trip for SIR Sphere treatment later this week and getting rejected. Wouldn’t you know it? My white count was down again. So I’ll be shooting myself up for a couple days. But at least I still have a good chance of getting the treatment. It was a little risking going back to Dr. George’s (the Chemo Kaiser) office. Remember she hasn’t been able to give me anything for almost four weeks now. I had to keep dodging the chemo filled darts she was firing at me from behind her desk. Carry on. --------------------------------------------

It's Back !!!!

2010-04-01T18:53:00.002-04:00

Last April I wrote about a cherry tree that Terry and I planted in the summer of 2008. It had made it through the winter and was blooming, signifying that spring was here and that summer, my favorite time of year was right around the corner. I didn’t think that I was going to make it through that winter, but I did. And that tree became a symbol of hope for me. Today it was about seventy degrees outside, the sun was shining, AND THE TREE WAS BLOOMING! It made it through another winter and so did I. SIRT has been rescheduled for next week now. Maybe it will be enough to get me through to next spring. Carry on. --------------------------------------------------

SIR Spheres Step 2 ..... NOT

2010-03-26T14:34:00.001-04:00

Yesterday Terry and got up at 5:00 am and made the one hour drive down to the hospital for the second phase of the SIR Spheres. We did the admission paper work, had my blood drawn and went to the radiology “holding” area to be prepped and wait for the procedure. I got into one of those flattering gowns and they hooked me up to the IV. After a while the interventional radiologist came in and spent a good twenty minutes or more with us explaining what was going to happen and what to expect afterwards. Then we waited some more; more than what seemed normal. Eventually the radiology oncologist came in. She’s the person responsible for calculating the correct dosage of radioactive spheres. She determined that the correct dosage for me was zero. It seems the blood tests revealed that my white blood count was too low. Although it was only slightly below normal, probably caused by the chemo, she explained that the SIR Spheres would cause the count to drop further. The risk was too great that it would end up at a dangerous level. Dr. Jabbour, the radiology oncologist, called Dr. George, my medical oncologist, and they decided that the best course of action was for me to go to Dr. George for an injection to boost the white blood count. So we left there and headed for Dr. George’s office. As it turns out, Patrice, the chemo nurse, taught me how to inject myself with Neupogen because I’ll have to do so for four days. On Monday I’ll go back for another blood test and hopefully get rescheduled. It was a big inconvenience but only a minor setback in the big picture. Carry on. ------------------------------------------

Which is Worse.... The Disease or the Treatment?

2010-03-23T16:49:00.001-04:00

About a month ago, maybe a little more, I began experiencing a pain on the outside of my left elbow. At first I thought it was tendonitis although I did not remember doing anything to cause it. After a while I thought it was something else though I wasn’t sure what. I was concerned because whenever I feel something unusual I’m afraid it’s the cancer. I thought this may be a tumor caused by the disease spreading to the bones. Bone involvement is common with this disease. At first I considered keeping it to myself. I was afraid that if the cancer was spreading they would not do the SIR Sphere treatment. But my better judgment got the best of me and I mentioned it to the radiologist’s assistant. She said that even if it was a tumor they would still do the treatment. So we went ahead according to plan. When I saw Doctor George the week before SIRT started I mentioned it to her. She felt it might be an inflammation but said after the SIRT we’ll do a bone scan. I still feel the pain although it’s not as bad as it was originally. I still don’t know if it’s a minor thing or the disease spreading. Not knowing, worrying, is part of living with this thing. As I mentioned previously, Dr. George gave me an extra chemo treatment before starting SIRT. On the one hand I’m glad because the SIRT is a localized treatment. It should help the liver tumors but will do nothing for any other tumor or the microscopic cancer cells that are probably floating through my body. The chemo is systemic. And on the last blood test that included a CEA test the count had gone down slightly. CEA is a tumor marker. So this latest regimen may be having some effect. That’s good. But on the other hand the cumulative effect of the chemo is really taking its toll on me. The peripheral neuropathy keeps getting worse. I am afraid it will eventually render my hands and/or feet unusable. And lately I am experiencing a kind of tinnitus in my ears. I think this may be further nerve damage. According to my research and what Patrice the chemo nurse tells me, Cisplatin is the culprit. Cisplatin is a chemo agent that was part of the last regimen and part of the current regimen. It seems that it or one of the other “platins” (oxaliplatin, carboplatin) is a component of most regimens. I’ve been on it for almost eighteen months which is a long time. So I may have to explore a new cocktail. One that doesn’t include a “platin”. But I hate to mess with something that’s working. While I’m going through the SIRT I’ll be off chemo, I believe for more than a month. Hopefully it will be enough time for some of the side effects to diminish so I’ll be able to resume with renewed strength. Today my daughter Heather called to tell me she just got engaged to be married. She seems very happy which makes me happy. On Saturday I got to see my nephew Matthew whom I haven’t seen for a long time. He’s developed into a fine young man, very personable, good sense of humor, and on my side of political issues. I really enjoyed seeing him. On Sunday I called John Hawker. He is a very positive, upbeat person. He lifted my spirits. John was on his way home from a weekend trip to watch the Utah Jazz play. While he was there he met Travis Poll, another inspiration. We are all members of an exclusive club; one we never wanted to join. But all three of us will carry on. ------------------------------------------

SIR Spheres Step 1

2010-03-19T22:01:00.000-04:00

Here’s a detailed report of the first step in the SIR Spheres treatment. We arrived at the hospital shortly before 7:00 am. My mother and her significant other Paul took me. Thankfully all of the admission paperwork, blood tests and preliminary examinations went quickly. There was no annoying waiting. By 8:30 they were wheeling me into the procedure room. There was a lot of preparation such as shaving and sterilizing my groin, hooking me up to IVs and positioning the CT scanner and monitors. The shaving part went quick because with chemo the hair on your head is not the only hair you lose. As I was laying there the first complication set in. I realized that I had not remembered to urinate before leaving the holding room. Upon realizing that I immediately had to go. I considered braving it out but when they told me it would take more than an hour and I would be conscious throughout, the panic set in and I knew I wouldn’t be able to make it. By this time I was strapped in, hooked up and had a surgical apron over the area with three or four nurses and technicians hovering around and the doctor on his way in. But I had no choice. I sheepishly told a nurse that I had to go. She brought over one of those plastic bottles and she put it down there and held it. Think that’s embarrassing? It gets worse. Guess what came out of me. Nothing! So she asked if I wanted her to leave the bottle there for a few minutes. I said yes and eventually got a little to come out. On with the procedure. They gave me a shot to numb the area and then told me they were putting something through the IV that would relax me. I felt nothing. The actual procedure involved the doctor inserting a catheter and through the catheter he put an instrument that implanted coils to block various veins, arteries and blood vessel while watching the CT monitor. Each time he would call out what I figured was the size coil he wanted. Periodically they would move the CT scanner and tell me to hold my breath while they took another picture. I think this went on for a good hour or so. When the doctor, John Nosher, was done he said “You did good”. I said “The hell with me how did you do?” to which he responded “I did fine”. The doctor left. At this point a male nurse or technician said he was going to remove the catheter. That would leave an opening in my femoral artery which is dangerous. I could bleed to death. So he was going to remove it and immediately apply pressure. He would maintain the pressure for twenty minutes which would allow the artery to form a scab. I said “You’re going to stand there for twenty minutes?”. He said yes and explained that there are devises such as sand bags that can be used to maintain pressure but they feel it is safer to do it manually. Hmmmm. So after about three minutes of pressure complication number two arises. I had to urinate again. I asked why I would be having that sensation and he said that I probably really had to go because they pumped a lot of fluids into me. He also said it was safer for me to go while he was applying pressure. Hmmmmmm. So out came the plastic bottle again. Are you starting to get a mental picture of this embarrassing moment. I’m flat on my back, urinating into a plastic bottle while a guy applies pressure to my groin. Talk about male bonding! After twenty minutes I was told that it was imperative that I remain flat on my back without lifting my head or my legs……for six hours. I knew there was to be a six hour recovery but I didn’t know it would be so rigid. I was not happy. I had to be moved from the procedure table to a stretcher by three nurse/technicians. As they went to move me I instinctively started to wriggle by body towards the stretcher. The tech slapped my leg and said DON’T MOVE. I guess they were serious. Before going back to the holding area they took me to the nuclear medicine department for more scans. They told me they had injected a dye into me in order to take some sophisticated pictures. They had to make sure that my blood was not flowing from the liver (I think) to other organs such as the kidney and lungs. That was the whole purpose of this procedure. So now I’m in the nuclear medicine suite. After about twenty minutes of prepping and some preliminary pictures the technician told me that there was going to be a series of pictures taken as the scanner slowly rotated 360 degrees around my body. It would take about thirty minutes. That was fine with me except for one thing. Complication number three. Yep. I had to go again. So out came another plastic bottle. The female technician summoned a male something or other to “assist” me. I didn’t even care any more. All this stuff they were pumping into me was running through me like a river. We got that done, got the pictures taken, and they brought me back to the holding area. The first thing I asked the nurse in the holding area was whether or not my time in nuclear medicine counted towards the six hours. She said “yes, what was it about a half hour?” I told her it was three hours but she didn’t believe me. She did agree to check the actual time the procedure ended and count from there. It was now about noon. I had not eaten since the night before and I was hungry. They offered me food but here’s where I have to give myself credit. Remember from my last post that I had been battling diarrhea from chemo. Eating seemed to trigger a movement and I had not yet had a normal movement. There was no way I was going to risk having an attack of diarrhea while laying flat on my back and not allowed to move. I can’t even imagine how they would get the bed pan in place. No thanks. I had enough embarrassment for one day. I declined the food. The afternoon went by very slowly. I should point out that I never sleep on my back. It is a very uncomfortable position for me. I could move my arms so I could use the TV they provided. I called Trrrr. I called my aunt. My mother and Paul kept me company off and on. I made it to the final hour and then I started going crazy. I was agonizingly uncomfortable. But I made it. Shortly after 4:00 pm (I think I got a little break) the nurse came in and said I could get up and get dressed. Time for one more embarrassing moment. My mother is great but she is a mother and you know how mothers can be. She looks at this nurse and says “Will someone help him get dressed?” The nurse looks at me and says “Did anyone help you get dressed before you came here this morning?” I said no so he looks at my mother and says ”Then I don’t think he’ll need anyone to help him now” I get to do it all again next week. ------------------------------------------

Here We Go!

2010-03-17T17:17:00.000-04:00

Tomorrow’s the big day; phase one of the SIR Spheres treatment. It will be a long day at the hospital. Mommy will be there with me. You may recall that the new chemo regime I started called for two weeks on then one week off. That would have meant that last week was a scheduled week off. Then, since the chemo had to stop two weeks before radiation, which is next week’s phase, I would be done with chemo for a while. But the Chemo Kaiser would have no part of that. She pulled out her calendar and figured out we could get one more treatment in last Thursday and still meet the two week requirement. So she shot me up again, the third week straight. And I’m feeling it. I was warned that the chemo agent Irenotecan often caused diarrhea and they were right. Very right. I have now officially renamed it I Ran to Can. I will be off chemo for a while now. That will be nice. It will be some time before we know if the SIR Spheres treatment is effective but I’m optimistic. For now. Carry on. ------------------------------------------

These Are Real Men

2010-03-12T11:42:00.002-05:00

Yesterday, as I was leaving the chemo lounge, there was a man standing just inside the entrance to the building. He looked homeless for lack of a better word. As I passed him he began to talk to me and I knew what was coming. He gave me several hard luck stories and asked me if I could “help” him. My nature is to find reasons not to help people like that. He’ll probably use the money for drugs or alcohol. It’s a scam, he probably makes a nice living doing this. I told him I couldn’t help him. He said “that’s OK, have a nice day”. I left and headed for my car. As I was walking to my car I thought of my friend Bob. Bob was a beautiful man and probably the most loyal friend I ever had. I met Bob when he began to work part time for my brother and I. He became such a good friend that when our business was bad Bob offered to work for free. He had a wonderful sense of humor and it was usually self effacing. Bob and I frequently went to Atlantic City (when business was good). We often encountered beggars there. Bob always gave them money. Bob died of a brain tumor. One day, after his death, I was in Atlantic City and encountered a beggar. Contrary to my nature I gave him money and told him it was for Bob. When I reached my car the thought of Bob made me rethink what I had done and then I began to think of reasons that I should give the man in the entrance some money. He did not appear to be high on drugs or alcohol. He was very gracious even when I turned him down. This was a very unusual place for someone to be begging for money. Maybe he really needed it. I went back to the man and gave him an amount of money that he probably never expected from anyone. He said “God bless you” to me. I told him that God already had. Lately I’ve been thinking a lot about men who have influenced me. Many come to mind. My friend Denis once lived nearby. Denis has an infectious love for life. He is always happy. Denis has faced several adversities since I’ve known him and he has never lost his optimism. He has never been bitter. Denis has an unending love and dedication to his family. And he too is a loyal friend. Denis moved away but whenever he comes back this way on business or to visit family he goes out of his way to come see me. Denis is an example of what every man should be. There are two men I have that I met through my children’s school and they have been friends for a good twenty-five years. Joe and John both gave endlessly to our sons by coaching little league, soccer and school basketball. John continues to volunteer much of his time to the church in spite of his own personal hardships. Joe, who is in a retailing business, has always impressed me with his knowledge of business matters. We often have enlightening conversations about business matters. Joe and John fall into a relatively small group of men whom I can say I both respect and enjoy. My friend Charles I also met through the children’s school. He once lived nearby but moved to Canada. Charles is a very intelligent and very serious man. It’s hard to get him to laugh but when he does it feels real good. Charles is a man of principle. He too is dedicated to family. He is another example of what a man should be. There is a man named Nick who worked for me for about twenty-five years, the entire time I worked my father’s business. He worked for my father. Nick lost his wife many years ago but never stopped talking about her. He was a dedicated employee but more importantly he was always a friend. My ex-father-in-law Sam was nothing but fun and laughs to be around. He taught me how to do things around the house through negative example. He inadvertently wired our sump pump to the dining room dimmer switch. When the dining room lights went off the basement flooded. One day he helped us cut up some old carpeting to prepare for a new installation. In the process he cut out the house alarm wiring. But he was always there to help. Sam had the deepest love for his two daughters that I ever witnessed. I’m glad he did not live long enough to see my divorce from one of them. I think it would have hurt him. My brother-in-law Bob is an example to me. Bob and his wife suffered the loss of a child before I knew them. Their faith has been unblemished by the tragedy. Bob is extremely dedicated to his family. He’ll drive endless miles to be with his daughter in Ohio, his mother-in-law in Jersey or to be with his wife at their summer home in upstate New York even if he had to commute for work. Bob is also a pleasure to be with. My friend Vince, whom I met about six years ago playing poker, provides me with endless opportunity to laugh and play. I’m still laughing from a night a few months ago when we were staying in Atlantic City and I and another one of his friends short sheeted his bed. Imagine the reaction of someone who is so fussy about his sleeping arrangements that he brings his own pillow to the hotel. But Vince is a very intelligent man and he shares my political views so we have some serious conversations as well. Most importantly, Vince helped me rectify some personal affairs before it’s too late. And then there are the men who are closest to me. Those who know me well know that I have had my problems with my brother. But through it all he has demonstrated determination and perseverance. And those characteristics have paid off for him. It was I who worked with my father before he died and it was me who my father entrusted the business with. My father never had the opportunity to see how well Tim would do with the business. He would be proud. I am. My step father Paul meant a lot to me. He taught me everything I know about fixing things around the house. That’s not much but whatever it is he taught me. He also taught me how important it was to love my mother. Paul left this world about thirteen tears ago. My grandfather was one hundred per cent dedicated to his family, particularly his wife. He was a hard worker and he was always smiling. He was the family rock. The only time I saw a crack in that rock was at my father’s funeral. The man who has had the most influence on me was my father. He died more than thirty years ago but there isn’t a day that goes by without me thinking about him. My father taught me about business and about life. Those that knew him will probably not understand this but he taught me to love. His love for my mother was undying even after they divorced. His love for me was unconditional. He stood behind me and beside me no matter what path I chose in life even when he didn’t agree with my choices. He struggled with a personal problem that probably killed him. Mine is probably killing me. He’s waiting for me. And then there’s the man who has been the joy in my life for the past twenty-six plus years. His name is Albert Jerome Wyman IV. AJ. My son. One day when he was a new-born, shortly after we brought him home from the hospital, I held him in my arms frantically pounding on his chest and back and then turning him upside down because we thought he wasn’t breathing. He ended up on a monitor for sleep apnea. I don’t know if I saved his life that day. We may have panicked and over reacted. But if I did save his life I also saved my own. AJ has provided nothing but joy in my life. Nothing ever gave me more pleasure than watching him play sports. There is a picture embedded in my mind of the most perfect moment in my life. It was a warm, sunny day, perfect element number one. I was on the sidelines of a soccer field with my two dogs, Felix and Oscar, element number two. I was with the woman I love, Terry, number three. We were there watching AJ play. It doesn't get micu better. I remember telling someone about it at the time. The only thing that kept it from being the absolute perfect time in my life was that I did not have a good relationship with my daughter at the time. But it is the closest thing to perfection I have ever experienced. AJ loves life. He has a million friends. And they are good friends. AJ loves children and animals. He has a great personality. Everybody likes him. AJ was loyal to me throughout my divorce from his mother. He has never let me down. AJ is working hard at his job. He is presently enduring fourteen weeks of boot camp like training. He is a constant source of pride for me. One of my biggest regrets is that I never let the men who have passed away know how much they meant to me. I’m going to make a point now to do that for the ones that are still here. -----------------------------------------------------------------------

The Hero John

2010-03-08T17:30:00.004-05:00

Last month I told you about John Hawker who decided to discontinue chemo and then took off to visit family. He’s home now. The following is from his wife Tracy’s blog this past Friday. Yesterday afternoon John and I went to see his chemo doc. John needed more pain medication and the doc wanted to see him. He embraced John and congratulated him on running away. He said John was an inspiration. The doc told John that so many people keep trying and trying so hard to stay alive because they hold so tight to this material world, but that when John dies he will be in heaven with family and friends and he will be more happy then he's ever been here on earth. Then he told John about another chemo treatment they could try that would have about a 30% chance of buying John some time, but that John would be flat on his back from the side effects. John declined. Doc totally supported his decision. Then the doc called in Alliance Hospice (in which doc is also a board member) and will oversee John's hospice care. I asked the doc if he had any hospice nurses who looked like Carrie Underwood. He said unfortunately no, but that they were all very nice. So today, John's nurse came to our house to meet him. She was a hottie. Very nice and pretty. John said, "Damn, she's cute." I was happy for him to get a hot, nice nurse. They will come to our house once a week to start and we no longer will have to pay for John's medications or get them ourselves. They will take care of all that. They will also send John a social worker and a chaplain once a week. John is returning to work on Monday. His nurse seemed surprised. John told her that he had no intention of sitting on his ass while he feels this good. John is actually feeling great now that the chemo is out of his system. He's running around being happy and cleaning his "man room" for the party. The party is to celebrate John’s 37th birthday. Party on my friend. --------------------------------------------------

Here We Go !

2010-03-03T13:21:00.000-05:00

This morning I received insurance company approval for the SIR Spheres treatment! Needless to say I’m happy about that. On Tuesday I go for the rescheduled CT scan and the first part of the SIRT will be on March 18th. Tomorrow I’ll receive my last chemo treatment for a while. I promised you more details about the procedure so here it is. It will probably be boring for most people but hopefully it will be helpful for patients and other people fighting this disease. SIR stands for Selective Internal Radiation. Sometimes the acronym SIRT is used which stands for Selective Internal Radiation Therapy. The procedure was developed by a company called Sirtex located in Australia. The procedure involves three sessions. Each session is a long day at the hospital. We were told to expect to be there from 6:30 in the morning until 6:30 in the evening. At least I’ll be high for part of it. Prior to the first session I need to have a blood test and a CT scan. The CT scan will be used to study my vascular anatomy leading to and from the liver and plan what has to be done in the first session. The blood test determines whether or not the liver is functioning well enough to withstand the treatment and continue viably after the treatment. In the first session, referred to as a “mapping” session, they will insert a catheter (I believe this instrument is classified as a catheter) into my femoral artery. This is the main artery that supplies blood to the lower part of the body. It will be accessed through my groin on the right side, very close to my hernia incision if not right on it. With this instrument they will seal off (embolize) blood vessels that lead to other organs. This is done to prevent the radioactive particles from traveling to organs other than the liver. Should that happen, the particles would likely end up in my stomach which would cause ulcers. This is basically all that is done on the first day. It is done under very light sedation but requires six hours of recovery. The long recovery is needed because of the invasion to the femoral artery. They have to make sure it closes up properly so I don’t go home and bleed out. The second step actually takes place a week later. Again they insert a catheter through the femoral artery but this time it is guided to the liver, through the hepatic artery, and the SIR Spheres are injected. The spheres are microscopic polymer beads (spheres) that contain a radioactive substance called yttrium 90. The spheres will lodge themselves in the blood vessels that supply blood to the tumors. The spheres will do two things. Their physical presence will block the flow of blood to the tumors, effectively starving them. At the same time they will release the yttrium 90 into the tumors thereby radiating them. The physical blockage is permanent. The radioactivity lasts several days. One might wonder why this doesn’t affect the good liver tissue and kill it as well. I don’t have a lot of knowledge about this but here is my understanding. The liver is one of only two organs in the body that gets its blood supply from both an artery and a vein. The lung(s) is the other organ. The tumors in the liver are supplied primarily by the hepatic artery so when the spheres are injected into the artery they reach the tumors. The healthy liver tissue continues to receive blood from the portal vein. During this second day only one side of the liver is done. I don’t recall if it’s the left side or the right side. There is another six hour recovery. After another three or four weeks it’s another full day procedure to do the second side of the liver. The spheres are only radioactive for a very short time. They must be flown in from Australia and used within a day or two so scheduling is critical. I hope we don’t get another snow storm. There are some expected minor side effects, primarily several days of lethargy, loss of appetite and low grade fever. There is about a twenty percent chance that some of the beads will end up in my stomach which will cause ulcers. There is a smaller chance they will find their way to other organs causing more serious damage including possible death. I’m not concerned. I’m facing possible death now. Come to think of it, we’re all facing certain death. No guarantees but I think I’ll gain some benefit from this. So here we go. ----------------------------------------------------------------

Foiled Again

2010-02-27T12:13:00.003-05:00

Yesterday's CT scan was canceled because of yet another snow storm. So now I'll have to juggle the rescheduling with another chemo treatment on Thursday and see what they want me to do about the blood test which I suspect I'll have to do again. I had already taken two doses of the foulest smelling/tasting stuff on earth the day before the canceled CT. Oh well... could be worse. In the grand scheme of things I don't think it delays anything because the SIR Spheres haven't been approved by the insurance company yet. Carry on.

Too Much Trouble to Live?

2010-02-23T21:47:00.001-05:00

I’ll hold off on writing about the details of the SIR Sphere procedure until it gets approved by the insurance company. There’s no sense writing about something that may not even happen. I will however fill you in on all that is happening leading up to and in preparation for the procedure. Dr. Jabbour, the radiology oncologist, had a discussion with Dr. George, the Chemo Kaiser, and they decided it would be best to continue chemotherapy until it must be stopped for the SIR Spheres. I believe that Dr. George’s response was “We’ll find something to shoot into him” while she was holding a can of Drano. You’ll recall that several weeks ago we learned that the chemo regime I had been receiving has stopped working. So today I began a new regime with my 27th treatment. For those who are interested it consists of Cisplatin and Irinotecan. Cisplatin is a carryover from the last regime. Irinotecan, also known as CPT11, is new. Dropped from the cocktail was taxotere, 5fu and the leucovorin that “boosted” the 5fu. I think the 5fu was the nastiest of the drugs, the one causing the worst of the side effects. But I believe it is the one most responsible for giving me 16 more months of life. It’s also the drug that was delivered through the infusion pump that I had to wear for 48 hours with each treatment so I’m happy to be saying a great big FU to the 5fu. I’m hoping to have fewer side effects with the new regime. The most common side effect with the Irinotecan is diarrhea. If that’s true why don’t they change the name of it to “I ran to can”? As I write this I am realizing that I did not receive Herceptin today. I was of the impression that the Herceptin would continue so I’ll have to inquire about that. You may recall that Herceptin is an antibody originally approved for breast cancer that was added fairly recently because I tested positive for the HER2 gene. I want to make sure my breasts are taken care of. I had been looking forward to some time off from chemo but, truth be told, I’m kind of glad to be getting it. The SIR Spheres, if they help, will only help the liver. I still need to be keeping everything else in check. The new regime is a three week cycle, week one on, week two on and week three off. There is testing that needs to be done before the SIR Spheres, namely a blood test and a CT scan. Yesterday Dr. Nosher’s people called to tell me to schedule the CT scan which we scheduled for Friday. Then they told me the blood test had to be scheduled before that. I told them that blood is drawn for testing with every chemo treatment so since that would be today I would just tell them what other tests were needed and it could all be done at once. The scheduler said “great!” and I thought things were clicking. Not so fast. Dr. Nosher’s assistant then called to tell me the blood test had to be done at lease one day AFTER chemo, but before the CT scan, with enough time to get the results to the radiology people BEFORE the scan. What the hell? By my calculations that would mean they’d have to draw the blood while I sleep tonight. Anyway the good people at the chemo lounge agreed to delay taking my blood until tomorrow and we’ll hope it gets to the radiology people on time. If not the CT scam may be postponed. That would be inconvenient because the reason the blood test is important to them is because of what they saw on the last blood test. It seems my creatinine level is high. This is a measure of kidney function. For protection they prescribed a liquid for me to begin drinking the day before the scan because the scan is done with contrast. The contrast is injected and can damage the kidney. So I’ll have to begin drinking it Thursday morning not knowing for sure that I’ll be getting the scan on Friday. Do you think I’m going to too much trouble to try to live? I’m not sure I’m worth it. --------------------------------------------------

All Systems Go ...... Well Almost All

2010-02-17T22:43:00.000-05:00

Terry and I spent much more time than we anticipated at The Cancer Institute of NJ and Robert Wood Johnson University Hospital today. It took long because we saw three doctors and they each gave us quite a bit of time. We were never rushed and I think we’d still be there if we had more questions because they would not have thrown us out. The end result of today’s meetings is that all the doctors agreed that I qualify for SIR Sphere treatment. I’m very proud of myself. I’ve been training for this for a long time. Oh sorry. I’ve been watching a lot of the Olympics lately. So all systems are go for me to get this fairly new procedure except for insurance company approval. That’s always a potential problem. They will begin seeking that approval right away. There are a lot of details that I’ll write about as time goes on. It’s a very interesting procedure. For now just a couple of things. First there are some tests I need to have done, namely another CT scan and blood test. Secondly this procedure is very specific to the liver. Thankfully that’s pretty much the only place there seems to be active cancer. There are two spots on my lungs but they are very small, not showing “hot” on the PET scan and all the doctors seem to consider them to be fairly insignificant. Lastly, it looks like I’ll probably get at least one more round of chemo before the SIR Spheres. Doctor Jabbour, the radiology oncologist, is going to talk to Dr. George my medical oncologist to see what she thinks. But we know what the Chemo Kaiser will say. She’ll probably come to my home that same day with pumps in hand yelling “hook him up”. There’s no guarantee that this will work (we’re told it’s about a 70% chance) and if it does it may not be permanent and if it is permanent the cancer can still appear somewhere else. But what we got today was all we could have hoped for; clearance from all the doctors to try. For that we thank God. So we’ll carry on. ----------------------------------------------

The Good, The Bad and The Ugly

2010-02-15T19:54:00.004-05:00

The Good: This past weekend marked the five year anniversary of Mark Richardson’s diagnosis. Mark’s diagnosis was very similar to mine. Like me, he was not a candidate for surgery. He was given three months to live. Mark has survived five years on determination, love and prayers with some chemo thrown in. There is a link to Mark ‘s story on the right side of this blog page. Carry on comrade. The Bad: Over the weekend John Hawker had to discontinue chemotherapy. John decided to go for quality of life and the chemo was not allowing that. It would have been nice if John was as fortunate as me and able to tolerate it longer but that was not the case. But don’t count John out. He decided to continue his fight on his terms, not the disease’s. His doctor sent a home health care nurse to disconnect him from his infusion pump. John then left on a trip to visit family. He left with a smile on his face. You can read about John by clicking here. Carry on comrade. The Ugly: This disease. It sucks. On a personal note this past weekend I enjoyed my son AJ’s visit to watch a movie with me and a Valentine’s Day visit to my daughter Heather. Where does that fit into the Good, Bad Ugly theme? None of the above; it was great! -------------------------------------------------

Hurry Up and Wait

2010-02-12T11:12:00.010-05:00

My approach to treatments has always been to proceed as quickly as possible. My thinking is that delay can only hurt. Many people, including doctors, have told me things like a week or two won't matter. I don't buy it. In response I ask them if 6 months delay would do any harm. They respond "yes". So I ask them if the damage is done on the 180th day or does it build up day by day. The answer is obvious. But sometimes we have no choice and that is the case with my pursuit of SIR Sphere treatment. The Cancer Institute of NJ was closed Wednesday because of the snow. I'm now rescheduled for next Wednesday. So I'll wait. In the meantime I have to deal with a domestic problem. The Oscar video is still generating comments and emails. It has gone to Oscar's head and he has developed a real attitude. See for yourself: What's the male version of Diva? --------------------------------------------------------------

One Step Closer

2010-02-08T22:35:00.000-05:00

Today Terry and I visited the Cancer Institute of NJ again. The purpose was twofold. One objective was to inquire about clinical trials. The second was to see if Dr. Poplin, a medical oncologist I saw there last May, thought it would be advantageous to try SIR Spheres rather than begin a new chemo regimen. I researched the possibility of clinical trials before today. What I found was that there are no phase 2 or phase 3 studies around here and even if there were I probably would not qualify as a participant. It seems that all the trials I found, including those that are currently recruiting and those that are not, exclude patients who have had previous chemo treatments. Phase 1 trials are used primarily to determine proper dosages. They use them to find out how much of a new drug can be tolerated by humans without much concern about how effective they are. Efficacy is determined in the subsequent phases. I would be very reluctant to enter a phase 1 trial at this point. Dr. Poplin said that they are taking part in a number of phase 1 studies. Thankfully she also said this was something for me to consider in the future. In other words not now. Dr. Poplin also gave us the best news I could have hoped for today; that pursuing the SIR spheres treatment is a good option at this time. Right now my disease is primarily limited to the liver so it makes sense to attack it there specifically. There is something going on in the lungs but it is small in size and not showing hot on the PET scan. She was not too concerned about it. SIR stands for selective internal radiation. It involves injecting microscopic spheres or beads through a catheter directly into the liver. The spheres contain a radioactive substance called yttrium 90. The physical presence of the spheres blocks the supply of blood to the tumors while at the same time slowly releases the yttrium 90 to irradiate them. Through precise placement they are able to do this with limited affect on healthy liver tissue. Enough science. This procedure is no longer considered experimental but is still very new. Dr. Poplin “cleared” me from a medical management point of view which is what Dr. Nosher wanted before accepting me as a patient. Dr. Nosher is one of a very few radiologists in the country who do the procedure. So now the plan is to see Dr. Nosher and a Dr. Jabbour who is a radiology therapist (I think) on Wednesday. Hopefully it won’t all get canceled because of the snow they’re predicting. There’s no guarantee the two specialists will agree that I should have the procedure and certainly no guarantee that it will work. If it does work it is probably only buying me time. It’s not a permanent cure. But today was a step in the right direction. I’m thankful for it. There are two personal points I’d like to make. Firstly, when this whole EC journey began my Aunt Barbara warned me that I should take control of my own care. She said I should not necessarily listen to any one doctor, to learn whatever I could and stay on top of everything that was being done. I agreed but I never realized how important that was. If I had not researched this on my own, after learning about it from another patient on a mail list forum, I doubt it would be a possibility at this point. Those of you who are fighting a similar battle and those of you that are going through it with them, don’t rely entirely on what you are being told without at least getting a second opinion. I must point out too that this is the second time I sought out this procedure because from what I read about it I felt the time was right. Secondly I think it’s important for anyone who is following my journey to realize how fortunate I have been. Today Dr. Poplin confirmed that I have gotten much more out of the treatment I have received than most people do. Many only last a couple of months. I’m fortunate that I have been able to tolerate it. I’m also fortunate that SIR spheres may be a viable option. I’ve said this before. If you are witnessing a miracle it’s nice to know what you’re looking at. My survival to this point has been miraculous; a blessing from God. I plan to show you more. Carry on. ------------------------------------------------------------------

And The Beat Goes On

2010-02-03T17:46:00.001-05:00

There’s not much to report except that my research and investigation is progressing. I have been in touch with Dr. Nosher’s assistant Donna who has been extremely helpful. Dr. Nosher is the radiologist who does the SIR Sphere treatments. There is a chance that I am a candidate but Dr. Nosher does not want to “medically manage” me. He would prefer that I was recommended to him for the procedure. My oncologist, Dr. George, does not seem to be familiar with the process. I contacted Dr. Nosher myself. The plan now is to go back to Dr. Poplin at the Cancer Institute of NJ whom I saw last May. At that time she suggested the possibility of clinical trials but since my current treatment was still working I opted to stick with it. She also recommended taking some time off from the chemo which I did. Donna is sending my info to Dr. Poplin. I will try to set up an appointment tomorrow. I have also been researching clinical trials. This is not going too well. There are not many around and those that are seem to exclude patients who have had previous chemo treatments. They are testing the efficacy of new drugs as frontline treatments. I haven’t been able to find any trials for secondary treatments, either in the present or the past. I believe that may be because there is not a large population of patients who are in my situation. While researching I was again coming across all the statistics showing that most patients with my diagnosis don’t survive beyond one year. I’m beyond 16 months now. I can’t help but feel like my best bet is to convince Dr. Poplin that I am not one of the statistics. I feel like I have defied the odds so far and my chances would be good if I can get her to take some unconventional approaches with me. We’ll see. Emotionally I’ve gotten over the initial shock of hearing that chemo is no longer working. I knew it was coming sooner or later so now I just have to deal with this next phase. To quote another patient I’m going to be realistic and expect a miracle. Carry on. ------------------------------------------------------

2 For 2 ..... Unfortunately

2010-01-28T16:26:00.001-05:00

I was correct with my self diagnosis of the hernia and unfortunately I was right about something going on with my cancer. Based on a more complete PET scan report and the most recent blood tests Dr. George informed me today that the chemo regimen is no longer working. There are tumors in my lungs and liver that were not there before. My CEA count is rising. Dr. George suggested I contact the Cancer Institute of NJ again to inquire about clinical trials. She said that if not, she can start a new chemo regimen and hope it is effective. My personal opinion is that she can’t be too confident about a new regimen if she’s suggesting a trial. I have taken it upon myself to inquire again about the SIR Spheres. Hopefully I’ll be able to gather enough information to make a decision next week. This is a point in this journey I knew I would come to sooner or later but it still hits hard. Who would have thought that I’d be so disappointed to give up the treatments that have been so brutal. Prayers are welcome and appreciated. ----------------------------------------------