Anybody Get the Number of That Truck?

(Note: edited and new images added below on 4/28)

OK, well maybe it was a very small truck, but it felt like a truck hit me this time. I have waited to update for several days until the steroids got out of my system. I didn't trust what I might write. I have done a fair amount of ranting over in the Cllforum website. I am finally feeling myself again. Wow, they had warned me the effects would be cumulative, but this time really was the pits. I was more fatigued, which I can handle, but the very worst part was that I was SO moody this time right through yesterday. I would go from very, very sad to grumpy to angry to depressed to feeling OK to upset again within what felt like 10 second intervals. I even snipped at my poor, 91-year-old Mom twice this time. Thought I was guarding against that! I bought some chocolate chip cookies and another big bag of M&Ms for her yesterday as an apology. Cookies or chocolate will do it everytime. I felt I better get both.

Sunday I taught my Bible study class in the morning and then I was wiped out for the rest of the day. I went to work Monday morning because I had to have blood work in the morning only a couple of blocks from where I work. I felt like I was swimming in thick pea soup all day. After the blood work, I went down the street to the hospital and visited a former boss whom I greatly respect. She has battled cancer for several years but now it has spread and she is not doing well at all. In fact, on Tuesday she transferred to a hospice facility. After seeing all the cancer patients while waiting for blood work and then visiting with her, my mood only darkened more. I went back to work, but basically, I was just there. Then I left a few minutes early, came home and slept until Cheryl woke me for supper. I usually fix the evening meal, but Cheryl had it all fixed, bless her heart.

Tuesday morning I had to go see my regular doctor because of an ear infection, or more accurately, sinus that is affecting my ears. Today I went to work again and then had to go to my endocrinologist doctor's appointment. Looking at my blood sugar levels, we are a little afraid the steroids are pushing the diabetes out of control toward insulin use. I have to use the insulin when taking the steroid, but it swung wildly this time and didn't really come back to normal. So, for awhile, I will be taking my blood sugar reading before each meal and then two hours after eating and keep a log for several weeks and then fax it over to the doctor. I won't take insulin though unless it is over 200 before eating. However, during chemo week, she adjusted upwards the amount of insulin I am to inject, depending on what the reading is, including injecting starting at a lower reading. So much fun!

I decided not to post Monday's blood report because it really isn't all that accurate for several reasons. First, I took the last steroid Saturday night and that always pushes up the counts and second, with my sinus stuff going on, that pushes up the white count, neutrophils and lymphocytes. So, I don't put much faith in them. WBC more than doubled, lymphs tripled, neutrophils almost tripled. My platelets went all the way up to 122 which would be nice if they stayed there and continued to go up. I won't get excited over any of it and just wait and see what they look like on May 8th, the morning of the next chemo round.

My brother, Bob, is flying in from Ohio next Thursday. It will be good to see him again. Then he is taking Mom back to Ohio with him on the 9th, the day after begining the next chemo. At least I won't subject her to my moods this next round - watch out, Cheryl! I really am sorry to see her leave, but about this time each year she gets anxious to go back north. This time she won't go all the way to NY until July. She lives in upstate NY with my older brother, but his wife, Barb, just had knee replacement surgery last week, so we are going to allow recovery time so there is no added pressure on her. Mom is fine with that and it will be good for her to visit with Bob and his family. Kind of ironic that she came down with my youngest brother, Bill, just before my first chemo round and now she is leaving right after my, hopefully, last round for awhile. At least I was home quite a bit this time so I was able to keep her company, even if I was sleeping or working in on the computer.

David E. made a comment on my last post. He said I mentioned Grumpy, Sleepy, and Doc, my constant companions during chemo weeks.


But David wondered what happened to the other four dwarfs. Well, I did some investigating. Here is what I found:

Dopey - the silliest of the seven and the only one who is completely bald and beardless - he has been around the whole time. I found him when I looked in the mirror.

Sneezy - the one who often has his finger under his nose - well, he is here too. He is the one responsible for my sinus problem and thus my gurgling ear canal. Now he seems to make an appearance more when I am eating. Embarrassing trying to eat with a runny nose! Gross.

Bashful - the one often with his hands clasped behind his back, shoulders raised and eyes cast skyward - darned if I can find him. He keeps hiding, I guess. I haven't seen much of him since high school where he was VERY prominent. He only makes an appearance on very rare occasions.

Happy - the most rotund of them all and always in a good mood. He keeps disappearing every third week when Doc and his buddies, Sleepy and Grumpy show up. They are around that week all the time. Grumpy just parades around like he owns the place. Happy usually at least sticks his head in the door once in awhile, but this time I was really concerned. He seemed to just disappear completely. I started searching for him everywhere. I looked for days, everywhere I could think of. Everytime I thought I found him, it was really Grumpy in disguise.


Well, good news. I found him today. Just as I had suspected, the evil Troll, Prednisone, had kidnapped him and was holding him bound up under the Congress Street Bridge in downtown Austin. The same bridge that millions of Mexican free-tail bats live under. How appropriate, the evil troll had driven Happy batty! I am so glad I rescued him today. I sure missed the little fella. When I got him home, I made him get on the scales. Sure enough, the Evil Troll somehow made him gain another five pounds! I had a long talk with Happy and he told me he would keep his guard up, especially around the 8th of May! The Evil Troll, however, was not destroyed and I know he will be back.

(My apologies to Uncle Walt, may he rest in peace. Sure hope his company doesn't sue me over this.)

What If They Find Nothing Up There?

I saw the neurologist this morning. I was impressed with him, a great doctor. I really have been fortunate to see some great folks. He thinks the pain in my, hmm, how to say this delicately, butt, and the backs of my legs is from lower back problems from my spinal deterioration. He thinks the numbness that happens on the top of my upper legs is from pinched nerves. Perhaps from swollen lymph nodes or perhaps from the back again. He has ordered an MRI, since earlier this year only X-rays were done on the lower back and the MRI was only done on the middle, upper, and neck region. I will then go back to his office on January 4th for some type of nerve tests. I don't know what that test is other than he said to bring a pair of shorts to change into. You would think I would learn to ask those questions while there and not wonder about it afterwards. He did say that it will be good to have a baseline on this nerve test because chemo can sometimes damage nerves and if that should happen, he will know where we started.

He doesn't know what to make of the memory loss. He said perhaps it is the stress of everything else that is going on with me. Perhaps that is true. I have really been making a lot of strange errors lately. I posted something twice to ACOR. Once last night and then again today. I noticed in a posting here on Dec 13, that I said to look for a link to David Arenson's blog on the left. It is on the right. I was giving away some stuff we had in our garage and I emailed the directions to our house to the person I was giving it to, but they were totally opposite. Every right turn should have been left and every left should have been right. I even had our house on the wrong side of the street. Then this Saturday we had a church Christmas party at our house and I sent directions to one person that had right and left mixed up again! My youngest daughter and my wife are dyslexic, not me! I have never mixed up left and right before. But then again, with my current memory, maybe I have and just don't remember. Ha! Anyway, the neurologist also ordered an MRI of my brain. They have an MRI from about six years ago when I had a mini-stroke and they can compare the results to that one. I am just wondering what he will do when the MRI shows just an empty cavity and there is nothing up there? I don't think brain transplants have been perfected yet.

Back to my treatment options. It sounds like I am on the right track with thinking about Chlorambucil as first line treatment from all the advice I am getting over on ACOR. I am also getting advice to slow down. Then, the great, fantastic, wonderful, Dr. Terry Hamblin, from the UK and one of the foremost CLL experts in the world, wrote to me. (It amazes me that a man of his stature and involvement in so much - just do a Google search on his name - takes so much of his time to help us out and answer questions and concerns over on ACOR.) I didn't even ask him specifically, but he took the time to answer me anyway. He is a wonderful, Christian man. Look at this post on his Blog for a Christmas Carol he wrote: http://mutated-unmuated.blogspot.com/2005/12/christmas-carol.html

Here is what he wrote to me:

"Dear John,
Good prognostic factors do not mean that the CLL will not progress, nor that it will never need treatment. On the other hand they do mean that the CLL is likely to respond well to treatment and that you are unlikely to die of the disease. I have certainly seen patients with good prognostic features eventually succumb to CLL or its treatment, but it has always been late in the disease at around 20 years follow up. Your lymphocyte count has gone from 15.94 to 29.4 in 6 months. This is just short of doubling in 6 months, you don't quite reach the threshold for treatment. However, this decision should not be calculated on just two tests. The trend should be measured with several tests so that an accurate assessment is made. Your platelet count has fallen from 118 to 100. Again, not quite reaching the threshold. The same strictures apply. You are not interested in a single observation. The next one may have gone up again. I do think that Chlorambucil is a good first treatment option for patients with CLL with good risk prognostic factors. Patients are likely to live for a very long time and if the suppression of CD4+ T cells that fludarabine induces can be delayed until later in the course of the disease, so much the better. Rituxin is moderately successful as a first line treatment, though CLL cells have less CD20 on their surface than other B cells and it seldom produces anything better than a PR.
Terry Hamblin"

(PR = partial remission)

What a terrific note, and so filled with optimism for my situation that it gives me great hope. I am taking his note with me to the Dr. on January 9th. He knows who Dr. Hamblin is and gave me some papers that had results from some of Dr. Hamblin's research. The only thing I wondered about was that if you look at the June lymphocyte count from the local lab that did the December work, that was 14.8. The lab in Houston had it at 15.94 in June. However, it is a small difference and still takes me to .2 away from the six month doubling time. His main point is well taken. You shouldn't base it on just one test, but should look at several. I do look forward to getting the swelling of the lymph nodes to go down, though.

David Arenson, among others, also wrote to me with lots of great advice. He also reminded me of his "three-day rule" that he wrote about on his Blog. A great analogy about being able to cancel sales of time shares that you might be pressured into. He further stated, "Sometimes that needs to be three weeks or three months! Don't let your doctor's scheduling drive the bus. It is important to take all the time you need to come up to speed on what might be best for you." Good advice. Slow down and smell the poinsettias, er roses.

As I reread the last couple of posts, someone might get the idea that I am panicking or scared of the treatment. Not at all. There is no fear at all! I am only concerned that I do the right thing and not mess up options for later on.

Well, I am off work until after Christmas. I took a couple of vacation days (nice change from sick time off). Tomorrow I am Christmas shopping for Cheryl and also trying to figure out a nice gift for our anniversary on Friday. Cheryl is off starting Thursday, until January 2nd! And it is free time, not charged to vacation days! If I can follow the directions for posting pictures, I will post a picture of our decorated home. I am the "Clark Griswold" of our neighborhood. (Reference to “National Lampoon’s Christmas Vacation starring Chevy Chase).