Wednesday, January 11, 2006

A Satisfactory Compromise

Well, I had a very interesting and long appointment with my oncologist yesterday. Cheryl and I met with him and the chemo infusion technician for almost two hours.

Bottom line, we will NOT be doing the treatment I wanted and we will NOT be doing the one he first wanted. Instead we came to a compromise that made sense for both of us. When I told him the treatment I wanted, Chlorambucil and Rituxan he reacted very strongly with a no, no, no, no. I was surprised at such a strong reaction. He said that treatment destroys your DNA and opens you up to all kinds of other cancers. I told him I had read and been told that by another patient too but as long as you kept it under 10 mg a day you mostly avoided those complications. He said he has read that also, but in the past he used that treatment a lot for many years and he had ruined too many people's health with it. He also said it would most likely ruin my chances for a transplant down the road. I said, "WHAT????" I thought I was too old for a bone marrow transplant. He said he was talking about an autologous stem cell transplant. I didn't even know he might consider that for me later. That is where they get me into a good remission, harvest my own stem cells, destroy my immune system and then reinfuse me with my own cells. My blood is passed through a machine that removes the stem cells (immature cells from which all blood cells develop), then returns the blood to the body. This procedure is called apheresis and usually takes 3 or 4 hours over one or more days to complete. The stem cells may be treated with drugs to kill any cancer cells and then frozen until they are transplanted back into me. He said if I went with my treatment we may hurt the DNA and ruin that option. (Near the end of the whole discussion he did say if I really did want to go with what I had suggested, he would, even though he was against it.)

I told him I did not want the Fludarabine which is part of what he wanted, because it also destroys the T cells which drops the CD4 count below 200 for two years or more and opens you to all the same opportunistic infections as an AIDS patient. Since my cancer is a B-cell cancer, I did not want to go that route until absolutely necessary. What good is remission if you are always getting sick with everything else? He saw my point. The first combination he came up with he had to reject when he remembered I was diabetic because it would throw my diabetes way, way out of control and I most probably would end up with severe neuropathy - I think it was Vincristine he couldn't add.

So to make a very long story just a little shorter, we came up with a modification, a compromise of both of our positions. One with which we were both satisfied. I will get a combination of Rituxan (the one made from mouse parts), Cytoxan, and heavy doses of Prednisone. This will still throw my diabetes for a loop, but not as much danger of neuropathy. I will probably have to go on insulin during the treatment cycles and will have to test my blood at least four times a day. I still have to get the port-a-cath put into my chest (my very own breast implant). He said I needed this now before my platelets got any lower and then we couldn't do the surgery. Once they get too low I could bleed from the regular IV.

So, next week I will see my primary care doctor on Monday for diabetes blood work, insulin prescription and training in how I am going to manage the diabetes with insulin. Monday afternoon a final dental appointment for awhile. Tuesday afternoon an office appointment with the surgeon. Scheduling nurse said I may have the surgery on Wed or Friday because I told her I couldn't do it on Thursday. Thursday morning Oncology appointment, base line blood work and final preparations. Thursday afternoon my mother (91 years old) and youngest brother Bill arrive from NY. (By the way, Bill is a great actor who just finished his latest show on Broadway - but that is another story.)

Monday Jan 23 - Is the big day, my first Rituxan infusion 8 to 15 hours long. They will first infuse me with Benadryl and give me Tylenol before starting. Must start slow and stop as I get reactions (chills, fever, low blood pressure, are common). They slowly increase the dosage every half hour. If they go too fast it could destroy my kidneys and I would end up on dialysis. This first infusion does a very quick massive cell kill and the body reacts. He said most reactions happen during hour 2 or 3. I have to drink a lot in order to flush the dead cells out as we go. According to them, I will have fever most of the night, but I have heard reports from many other patients that they didn't.

Tuesday Jan 24 - First Cytoxan infusion - will probably make me very nauseous. Also start the Prednisone which I will take twice a day for five days.

When we first started our talks, the doctor asked me if I could afford to take a couple of months off work - I told him no.

After discussing the treatment schedule I asked him about going to San Angelo for my work the week following treatment. He just stared at me. Finally he, very slowly, said, "Well, different people do react differently to chemo." Then, right in front of my wife, he said, "You know, your health is more important than your job." Then my wife shot me "THE LOOK." I swear it was a conspiracy. He said the lowest point normally comes a week to ten days after infusion and then the counts start climbing again out of the danger area. Just in time to start the whole thing over again - depending on blood counts -- every three to four weeks. They will take my blood once a week to check the counts. Bottom line, at least the first trip to San Angelo is probably out for me. I have a lot of trips for work scheduled in the next couple of months and they may all be out. My bosses have been great and they already have back-ups scheduled for me in case I can't go. My team lead is taking the bulk of the back-ups and with her regular schedule plus mine, she will only be home one week for the next three months. Whew!

Things they said will probably happen as a result of the treatment: Severe anemia, very low platelets, very low drop in white cells (which we want to get rid of the excess). They can counter that with transfusions of platelets and packed red cells and something else I forget. Very much at risk for bacterial infections. He told me that when I was tired I was to stay home and if I was at work and got tired I was to go home. I have to watch for any sign of infection and at the first sign of a cold sore or the beginning of shingles, or any fever over 100.5 after that first night, I was to call, day or night and speak to the doctor on call and start anti-viral meds right away.

The tech spent a long time talking about side affects and the importance of eating when I will not feel like eating. Small numerous snacks to help control nausea, medicines that can help, and to eat peanut butter and drink Glucerna (normally Ensure, but not for diabetic) for nutrition, even when I didn't want it. It was funny because he talked about hair loss and how it can be traumatic. I told him no problem. Then he said it was often more traumatic for the spouse as she saw hair on the pillow, in the shower, on the sink, etc. Again, told him no problem as we already went through that. As I was losing it on top we almost had to sweep the bed out in the morning. He thought that was funny. He talked about lots of other side effects, including being up all night when on the strong doses of Prednisone (he said for Cheryl to make a "honey-do" list because I may want to clean all night - ha!) and how it could affect my personality (how could I possibly become more loveable?) After all the different effects, he gave us a VERY thick manual titled "Home Care Guide Cancer -- How to Care for Family and Friends at Home." The book is thicker than any of our training manuals. Now that was sobering. Neither of us has even looked at it yet. He told us the importance of not being around sick people. He was concerned about where I work and asked if I trained patients. He was somewhat relieved that I didn't. I train the folks that deal with patients. He said the grand kids needed to have all their shots up to date, and they were not to come around me for 24 hours after any vaccine. Lots of hand washing for everyone was important. Starting on the 23 rd I have to switch to an electric razor. And a bunch of other stuff -- Cheryl took lots of notes. He also told us when either of us ran out of leave the Family and Medical Leave Act takes over, even for Cheryl if she has to stay home to help me. He painted a much darker picture than he needed to paint, I think. We shall see. Then I had to sign releases that I think gave them permission to kill me. When we got home, Cheryl went over her notes with me (while I could still remember) to make sure she got it all. We spent most of the evening on the phone talking to our kids then my Mom and all my brothers.

I am definitely not scared or even very nervous about it. In fact, I can just hear some of my fellow patients as they read this saying, "So?" Many of them have gone through numberous rounds of many different combinations and they are pros at it by now. However, for me it is starting to seem like a little bigger deal than I first thought, I guess because we are now moving from the theoretical to the reality of it all.

I am sitting in a hotel room in El Paso, TX, right now. Tomorrow I begin training a three day course I put together. I am looking forward to the training as it will keep my mind occupied and I will be doing something "normal."

I appreciate the understanding of everyone at work who will be, and have been, covering my duties for me. Before diagnosis last year, I had several hundred hours of both vacation and sick leave saved up. I have cut that by about a quarter with all my medical appointments this year, but I still have a couple hundred hours combined time saved. I got an email from my training director who told me not to worry about work, take care of what I needed to take care of, use up all my time I have coming and then we will go into the "sick leave pool" for extra days. He said we can also arrange work from home as I am feeling up to it. When I am not on the road training, the courses I develop are done on the computer. Counting my laptop, we have three at home. In fact, I may even get more done at home than at the office. There is a supervisor's quality assurance course I was supposed to have developed this past year and I haven't gotten very far. Didn't seem like I could concentrate on it very well. Now that I know the game plan and we are taking action, that relieves much of the uncertainty. Now if I can just get it done before "chemo brain" sets in. If not, could be an interesting course!

I really do not think I will have too rough of a time with this treatment, but then who knows? No matter whether I do or not, the support I have is fantastic. I have so many people praying for me all over the place that I feel very secure and at peace with it all.


Anonymous said...

Hello John,

This is the first time I have ever read one of your posts. I read all of David Emerson's posts and I read your comments to him and decided to read your latest entry. I am completely impressed with you and your attitude and I plan to add you immediatley in my prayers. I pray for David often and now I will include you each time I pray for him.

God bless you on your journey. You seem to me to be a strong and courageous person.

Breast Implant said...
This comment has been removed by a blog administrator.
DavidE said...

I'm glad that you have a "plan" but wish it were something else! I laughed out loud when I read your comment "I am not scared or even nervous..." - I hear you brother! Before my plans were changed (I was within 96 hour of starting treatment) and I felt the same way.

Keep up the positive attitude, we'll keep praying for you and remember FLHW!!!!

Anonymous said...


Our thoughts and prayers are with you as you prepare for treatment. Your positive attitude and strong will are an inspiration. Please remember that there are people out here rooting for you and praying for you and your wife each day.
Be strong, have faith. God Bless.

David Arenson said...


In just a couple of days you'll start your treatment. I am sending good thoughts your way. As a Rituxan veteran, I can tell you not to be nervous about that. I'm sure you'll do just fine.

May your response to treatment be even better than you're hoping for!


mary said...

Hi John,

Just back to work after a week at WAP with the protocol based training and a week out with Maya. Don't worry about work, we will manage, just take care of yourself. You are in my prayers. I sure miss the monday morning groaners!

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...
This comment has been removed by a blog administrator.