Thank You Althea

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/

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Plan Implemented

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.

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A Tough Decision

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.

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Today

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.

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Losing Control

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

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

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????

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)

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

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. ---------------------------------------------