If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.
Friday, March 26, 2010
SIR Spheres Step 2 ..... NOT
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.
------------------------------------------
Tuesday, March 23, 2010
Which is Worse.... The Disease or the Treatment?
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.
------------------------------------------
Friday, March 19, 2010
SIR Spheres Step 1
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.
------------------------------------------
Wednesday, March 17, 2010
Here We Go!
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.
------------------------------------------
Friday, March 12, 2010
These Are Real Men
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.
-----------------------------------------------------------------------
Monday, March 8, 2010
The Hero John
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.
--------------------------------------------------
Wednesday, March 3, 2010
Here We Go !
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.
----------------------------------------------------------------
Subscribe to:
Posts (Atom)