Thursday, July 12, 2007

One Year Anniversary Since Chemo Therapy

I guess I could toast my anniversary, but I don't drink and besides, that is rather a strange anniversary, but certainly one worth celebrating.

I went to the oncologist Monday but I have been waiting to post because I thought I would have some other blood test results back. However, they aren’t back yet so I will post this as I had promised a couple of folks I would get a post here by today. My blood tests this time were decidedly mixed results. He didn’t test the IGg level this time, so I don’t know what that is. My white blood count and my red blood count were both in the normal range for the first time since my last round of chemo, one year ago today! I am not anemic.

However, my absolute lymphocyte count continues to slowly climb in the area above the normal range (lymphocytosis), my platelets continue to decline (thrombocytopenia) and dropped to 90 (90,000/mm3) and my lymph nodes continue to slowly increase everywhere (lymphadenopathy). So, this technically puts me into Rai Stage IV of the four stages of the disease or stage C of the Binet system that has stages A, B, C. But this only sounds worse than it is. As they say, “Been there done that.”

“Rai: Stage IV CLL is characterized by absolute lymphocytosis and thrombocytopenia (<100,000/mm3)>

Binet: Clinical stage C CLL is characterized by anemia and/or thrombocytopenia regardless of the number of areas of lymphoid enlargement (Rai stages III and IV).”

Again, they don’t treat numbers, only symptoms. My disease primarily presents as the lymphoma portion so my blood tests don’t usually look too bad. Even before treatment, my white count and lymphocyte count never did get too terribly high. To show you that my doctor isn’t all that concerned, he is skipping my August appointment and I don’t go back until September. If my platelet count gets to about 50 he will order another bone marrow biopsy to see what is going on in there.

I did start the testosterone replacement therapy. I am using the gel that I rub into my skin once a day. However, I am starting at a very low dose. At the end of the first week I thought I saw a very big difference because I actually had energy over the weekend even though it had been a week I was out of town. I was thrilled! But, it didn’t last long. Cheryl thinks my energy level is better than it had been and I guess it is, but I don’t feel as energetic as I did that first weekend. I still nap in the evening and during the day on weekends. Someone asked about sleep apnea, but I don’t see any signs of that. I sleep wonderfully during the night, rarely snore, and rarely wake up at all until morning. I don’t even turn over very much and the covers are rarely disturbed very much.

Normal free testosterone level is 50 – 250 pg/ml and mine was 21. I am on a very, very low dose of the gel, in fact only one quarter of the dosage listed on the package. My doctor didn't want to increase it yet until they checked my level now. That is the test that isn’t back. The therapy can raise blood sugar (I have noticed that a little) and there is some indication that it can have negative effects in the area of prostate cancer. There is controversy that it actually causes it, but there is little doubt that if you have prostate cancer the therapy will accelerate the disease. Of course having CLL/SLL puts you at risk for other cancers anyway, so it is walking a tight rope.

I now have another ear infection. All last month my right ear would start to ache and then just as I was about to decide to go to the doctor, it would stop. This happened three or four times. Monday afternoon, after my oncology appointment it really started to hurt and it hadn’t done so in over a week. So I made an appointment with my primary care doctor. I now have some antibiotic drops to use for ten days. Umm, yes, I know my oncology doctor said I would do the IGg infusions if I had another infection. I guess I will let him know in September. HA!

Only two more full weeks at work! Technically I don’t retire until August 31st, but I only have to work one day in August as I still have enough annual leave left to take off the whole month. When I was first diagnosed, I was so fortunate that I had so much leave in the bank. I had rarely missed a day ill in the years I worked for the state, so I had over 700 hours of sick time saved up. I also always kept the maximum number of carry over annual leave days saved. I did this just because of my age I thought if I ever had a heart attack or some other major illness, I would need the time. I am thankful I did this. Even with all of the doctor’s appointments, chemo treatments and going home early because of not feeling well, it wasn’t until this February that I exhausted all my sick leave (I still get 8 hours each month). However, I have 196 hours of vacation time still left. Hurray. I only have one more class to teach and that is next week. I will be in Fort Worth and it is a course I wrote. This will be very strange because I have been teaching since 1971 when they made me an instructor in the Air Force. I am looking forward to it.

On another note, please keep David E. and his wife Mary in your prayers. He is my “cyber friend” that I have often written about. His advanced prostate cancer, which had spread to his bones, is on the march again and it looks like he may be facing chemo treatments now. He has been trying to avoid that as long as possible by using other treatments that have helped but now have seemingly stopped working, or at least not working as well. He will have to make a decision at his next appointment in August. Starting chemo is a scary time for anyone!

As always, I appreciate your prayers, your concern, your comments here and the many I receive by email. Knowing people care is more important than I ever realized before. Thank you.


Anonymous said...

I'll try leaving a comment again, the first one didn't take. Happy retirement, John. I think you will find you are busier than ever! Now you can write! I'm still praying for you here. We are having a wonderful summer. The oldest three have gone to camp for two weeks and returned. I am trying to pull together their curriculum for the next school year. We usually begin Aug. 1st but didn't start until after Labor Day last year. I love the freedom homeschooling gives us. My oldest will be a senior and my youngest a first grader. Ack, I can't be that old:)) Blessings to you, your wife and daughters.


David E said...

I was a little behind in my blog scanning and jus tran acros your post! Thanks John!

Anonymous said...

Hi, John,
Long time, no see! I've really taken a break from EVERYTHING that has to do with any kind of cancer. Or at least posting about it. I haven't even kept up with the ACOR list. Yes, I get them, but I hadn't even opened any for some time. Just thought I'd check up on you, though. Glad to hear you're retiring! Sure wish I could. This gal got spoiled last year with 6 months of medical leave. I promise I'll post soon. Notice I haven't posted since Jan 1? not a very good blogger, am I? LOL

Just got word that I have diabetes. Talk about a mixed blessing. Here I thought my tiredness was related to CLL!

Be well,