Wednesday, March 31, 2010

An amusing day...

...if that's possible in an oncology treatment center.

Each visit, it seems, brings us a new friend or a new sight or an interesting occurance. We always see the sad cases; those people who are very ill, look weak and are wearing scarves because, presumably, their hair has been lost due to chemotherapy. We see those who are all too young who will be fighting cancer for the majority of their, maybe short, life. We also see, thankfully, a lot of people who look perfectly normal and who you would never suspect were ill if you encountered them outside.

We encounter talkers, who talk incessantly, telling you every detail of their disease progression, whether you are listening or not. Quickly, we recognize who they are and sit in a recliner far away.

Yesterday, we saw a recliner occupied by an unmoving shape completely covered, except for shoes, by white blankets. The shape didn't seem to move, even to breathe. My adorable wife looked at me and half-whispered, "You don't suppose he's d...?" I replied, "I dunno."

After about an hour, the shape threw off the blankets, a man emerged and dragged his IV pump along to the restroom. He returned and replaced the blankets, even over his head and face, although now he was sitting up. He sat immobile for another 30 minutes. His cell phone rang and he rustled about under the blankets and said, "Yeah? hmm...K." There was more rustling under the blankets and he then remained motionless, completely covered, except for his shoes. He was still there when I finished and left.

Every person has their own way to get through this ordeal; his was just a bit more unusual than most!

On Thursday, I will be done! I will celebrate with a glass of wine and a steak and a trip to see my beloved bother and sister! Here I come!

Monday, March 29, 2010

Back in Big City

The sixth and final round of fludarabine treatments started today. It will continue through Thursday. The first stop, after blood is taken, is to visit with Dr. Hema. He examined my blood test results and again reported that the fludarabine is killing the B-cells that carry lymphoma and is dragging down my hemoglobin and platelet counts. He said it was an entirely expected and normal process. He said that, after treatment ends and my system builds new B-cells, my numbers will return to normal.

My infusion treatment started with a hitch. Nurse P had trouble getting an IV started in my poor swiss-cheesed left arm. I have tried to keep my infusions in one arm; the left, less used arm. After some difficulties and some false starts, P changed to the right arm. Then infusion went smoothly.

I had my routine physical Friday and was called with results today. My cholesterol has usually been below 100. Now it is a more normal 177. Most people would be alarmed that their cholesterol had risen 80 points in one year. I think it indicates a return to well as a greasy, fatty diet! Dr. Hema tends to agree. He didn't ask me to moderate my gluttony; we both believe that, as long as my weight and cholesterol are reasonable, that my lymphoma is the highest priority. Nonetheless, I am giving up pecan waffles and Cherry Garcia ice cream!

After this weeks treatments, I will have blood tests in two and four weeks and then a CT scan. We hope for a great report.

Saturday, March 20, 2010

Blood test results are in

I received a call from Nurse S. at Dr. Hema's office. As I had been told to expect by Dr. Hema, the results were good enough but not great. Evidently, as the fludarabine kills type B blood cells, the ones that carry lymphoma, hemaglobin is repressed as well. As the cancer is fought, apparently hemoglobin improves and then plateaus, exactly as mine has.

The real purpose of the tests, aside from monitoring my general health, is to be sure no passing infections have attacked and are defeating my immune system. They haven't.

March 29, I will be back in the infusion room for the sixth and final fludarabine treatment; spread over four consecutive days. I will be happy to get it over and behind me. Let's hope that lymphoma is behind me, as well!

We talked to a woman last Friday who said her father had had lymphoma for twenty years. I said I hoped I could have it for twenty years, meaning that, in effect, I could survive to at least age 87!

I got a stack of papers from Medicare today, indicating that they had paid just over $50,000 for my care from roughly November 1 to March 1. My medigap carrier has paid quite a lot, as well. I myself have only paid $155, my medicare deductible, out of pocket. It is quite remarkable if you know the amount that medical providers charge (huge!) and the amount that Medicare approves and pays (not huge, at all).

Please keep paying your federal taxes willingly and on time! I could never pay for this all myself.

Monday, March 15, 2010

Blood test Monday

Today I went for my usual mid-treatment blood test. I have the test at my local doctor rather than driving for 45 minutes to Dr. Hema's office in Big City for a two minute test...and then 45 minutes back home.

Nurse K who runs the lab is so nice and so kind that it is almost a pleasure to be stuck and probed yet again. I have had some trouble getting the nice kids who man the telephones to realize that it is indeed acceptable to bring in an order from Dr. Hema to be carried out there. A firm but polite letter of complaint to my local doctor seems to have corrected my difficulties.

At my last visit with Dr. Hema, he said that my hemoglobin number was being held down a bit by the effects of the fludarabine; I expect that my plateaued number will continue. The main purpose of the tests is to be certain that my immune system has not declined due to the effects of the fludarabine. I have avoided crowds, stayed washed up and I feel pretty confident that I am healthier than I have been in many years.

Now if I can just get a clear report from Dr. Hema!

Thursday, March 4, 2010

New attitudes

Cancer is, in its own way, funny. Today, we were entering Dr. Hema's offices to start the last day of round five of my six round fludarabine treatment. We encountered a very nice couple who we had seen Monday. He was in a recliner getting infused while his caring, concerned wife sat nearby.

As they were checking out and we were checking in, we exchanged the usual polite greetings. "Hello, how are you?" I asked him if that wasn't a loaded question, given where we were and what we were there for. He agreed and suggested we start over, but this time, being quite honest with each other. I asked, "How are you?" He said, "Lousy, actually. I have colon cancer, I'm undergoing chemo and it makes me sick. How are you?" I said, "Pretty darned bad. I have lymphoma, I'm undergoing chemo and it seems like there are treatments for the next thousand weeks."

He then said, "Well I hope you gain remission and never have to get another infusion and feel better." I said, "You mean, you hope to never see me again?" He smiled and said, "Exactly!" I said, "Well, my friend, I hope the same, that I never see you again."

They were a great couple and I wish them well.

Only in the infusion room is, "I hope I never see you again" a hopeful greeting.

I am glad to be 5/6ths of the way to the end of fludarabine treatments. I feel quite well and quite hopeful. My next milestone is blood testing on March 15. I have many marks on my forearm from having IVs inserted. In the illegal drug world, they are known as needle tracks. I have visions of the police noticing them and asking my drug of choice. I wonder if they would have to radio the station house to find out about fludarabine...and if they would be apologetic!

Thanks again, friends, for your well wishes.

Monday, March 1, 2010

Round five begins

Today, we ventured to Big City to start round five of the six round fludarabine regimen. I have been doing so well that, once again, the round will be completed in four consecutive days, instead of five as previously. As we expected, Dr. Hema was very pleased with my progress and, especially, my M-spike number. He expects the number to fall to zero by the end of round six. An M-spike number of zero and a clean CT scan would indicate remission. Of course, there are always unknowns and surprises. We could fall short of remission or, even if we achieve it, it might be short-lived or, hopefully, long-lived. Of course, "long" is a relative word.

Dr.Hema, my adorable wife and I are still very delighted with my progress. After the trouble with rituxan, it is wonderful to see good progress with nearly no side effects.

After round six is completed, I will report for blood tests every three months at Dr. Hema's office and, probably intermediate tests at my local, nearby physician.

I find myself in the unusual position of looking forward to painful, time-consuming and inconvenient infusions. They bring remission ever closer!

As we often do, we treated ourselves to a big lunch prior to infusion. Hey, we were showered and dressed, so why waste it without a nice meal.

All I want for my birthday and St. Patrick's Day and Easter and spring break is remission!

Today's weight: an alarming 183! Maybe I should rethink the whole big lunch program!