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.)

Confused Again

Well, I am a little bummed out, a little confused and a little ticked for the first time with my doctor. Also, back on steroids of course . (Even took my Ambien three hours ago and still wide awake.)

Today, actually Monday because it is now 3 a.m. on Tuesday, was my fifth round of chemo. That went fine as usual except my heart rate got too low for the chemo nurse -- in the 40 bpm range which made her machine beep every time -- and some restless leg, more of a restless feet, syndrome. She said next time we will do the Benadryl by pill instead of infused and along with not taking my blood pressure medicine the morning of chemo, I now won't take my beta blocker, Tenormine, either. I take the blood pressure med and the Tenormine to keep my heart rate down. Without them my heart rate is 150 or above, even when sleeping. I have been taking this combo for 20 years and it keeps my pulse rate in the 60 and 70 bpm range. I slept through the vast majority of the treatment and didn't even hear her change the last three bags and Cheryl said I snored through BP and pulse readings, too. She said I snored louder than she has heard me since I lost all that weight a year or two ago. I am sure THAT pleased all the others in the infusion room. Maybe that is why when I woke up there were no other patients left.

However, I am upset about the doctor visit before the infusion. I had blood work first as usual. As you know from previous postings, I have been very pleased with the progress so far. Well, the first thing he said was, "I think we need to stop the treatment, do a bone marrow biopsy because I think we have plateaued and you are only getting a partial response. Then if the bone marrow biopsy still shows 50 or 60 percent involvement, as I suspect, we need to change treatment to CHOP or FCR." (When we started the marrow was 90% infiltrated) WHAT??? I told him I thought we were getting a great response because my nodes had disappeared, my WBC and Lymphocytes were in the normal range. He said that is true, but my platelets aren't coming up and the Lymphocyte percentage is still 57 percent (at least I thought I heard 57, but it is really 52.6% and I didn't have a copy of today's test, yet) . I was shocked and went into my "no Fludarabine" speech about the long term affects they are seeing and the chance of Richter's transformation. He basically pooh-poohed that and said it would be a waste to keep going with treatment that isn't working. He then said I had to be careful about all the internet research I was doing because you can always find anything to support your position and FCR has had great results. I told him I knew that FCR got great results but I was researching legitimate sites that quoted actual CLL research documents from respected doctors. (I am going to find a bunch and email them to him tomorrow. I hope he reads them.) We bantered for 10-15 minutes about this. Anyway, bottom line is he is again going along with what I want and I will finish up with the one more round scheduled for three weeks from now, May 8th, then do the BMB (which I will insist be done by conscious sedation). I hope and pray the marrow involvement is way, way down. Cheryl wants me to listen to him because he is the one with all the diplomas on the wall. True, but I also know from reading in the CLL forum and other lists that doctors are not the all-knowing OZ and some are down right scary. Although I respect him, I can't put blind trust in him. Remember he wanted to treat immediately a year ago.

My daughter, Cindy, who is more supportive of my research, suggested that maybe I go back to Dr. Weirda at MD Anderson, do the BMB there and see what his opinion is. I was due to go back to see him in May of this year after he put me on watch and wait last year in May. That might not be a bad idea.

Here are today's blood results:WBC - 5.4; LYM 2.8 & 52.6%; *MID 0.3; GRAN 2.2; RBC 4.31; HGB 13.9; HCT 41.9%; MCV 97.2; MCH 32.3; MCHC 33.2; RDW 14%; PLT 93; MPV 10.1"
*MID cells may include less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts and other precursor white cells."

Now this is a different lab from the tests from a week ago. But, the ONLY ones out of this lab's range are MCV, high by .2; MCH, high by .3; and PLT obviously low by 47. So how the heck can he say it isn't working when EVERYTHING else is in the normal range???? Even the Lymphocyte percentage is within his lab's normal range of 10.0 to 58.5%.

Told you I am getting grumpy.

This Week's Blood Test

Sorry this is late. I actually have gotten several emails wondering how I am doing and wondering where Monday's post was. Well, I am in a hotel in Waco, TX, for my job. I was going to post last night but fell asleep before I got to it. Then tonight, I spent a lot of time reading all the new posts over at the CLL Forum. There are now 4o8 members, after only two months in existence and it has become a very busy site. But, wow, the support and caring of the members is fantastic! We are a true community.

Anyway, I am doing fine, mood is better, and the blood test results yesterday are still looking good. I was expecting my red cell count to be down quite a bit, only because the past week I have been very tired and taking long naps, but it wasn't. Even though I was working from home, I had to put in for a few hours leave a few of those days because I didn't get eight hours of work done. Four hour naps can take a bite out of your day. Hmm, maybe I am just getting lazy?

Here are my latest results:

WBC 4.6 (normal 4.0-11.0)
Lym# 2.5 (normal 1.0-4.0)
Lym% 54.60 (normal 19-48%)
Neu# 1.4 (normal 3.0-7.0)
Neu% 29.9 (normal 40-74%)
EOS# 0.0 (normal 0.1-0.4)
RBC 4.38 (normal 4.70-6.10)
HGB 14.8 (normal 13.00-17.00)
PLTS 101 (normal 130-400)

The really important ones (to me) are the WBC, Lym# (cancer load indicator), Neu# (infection fighters), RBC (anemia indicator), and PLTS (clotting factor). So, you can see that things really are looking good, with perhaps the Neutrophils becoming a concern. However, the doctor doesn't get real concerned unless I start getting infections or they get to 1.0 and below. Then he will treat to get them up. My platelets, although still low, are heading in the right direction. Over 100 is very good. All in all, my inner mouse/hamster is kicking cancer's butt. YEA! Keep it up, tough guy!

Next blood test and treatment is next week Monday.

In the last couple of days, I have gotten several emails from folks whom I didn't know were reading my ramblings here. Thank you so much. I really can't express adequately my gratitude for the support, caring, and prayers from so many people. Cheryl and I and the rest of the family truly do appreciate it. We do feel the love!

I am looking forward to this coming Sunday - Easter. A time of true celebration for Christians. The class of adults I teach on Sunday morning has decided that we will suspend for one week the study we are doing in Exodus and have a Resurrection emphasis. We are going to take a few minutes to exam what the "Gospel of Judas" is really all about. You may have heard some news reports in the last week or two. The one I heard on NBC news last week said it was shaking the foundations of Christiandom! I think NOT!

Well, must get my beauty rest (hmm, even the extra sleep isn't helping in THAT area!). Thanks for reading and thanks for caring.

Is My Inner Mouse/Hamster Kicking Butt?

I sure hope he/she (remember chinese hamster ovaries?) is kicking butt on those nasty cancer cells, because I feel like it! Today has been a little strange. I worked from home today, but I will have to put in some of that time as leave time because I didn't put in a full 8 hour day. I spent quite a bit of time over on the CLL patient's forum (www.cllforum.com) and kept finding myself getting upset because several of the folks are struggling. Then later tonight I went to the grocery store and it took me almost an hour and a half to get through the store. I felt like I was barely moving and couldn't wait to get home and relax. I am going to repeat a post I put in the forum to share with you all. My apologies to those who read it over in the forum.

I titled the post "Conflicting Emotions - Anger/Compassion"

In our battle for our lives or our loved one's life, I think we are sometimes surprised by the emotions that sneak up behind us and smack us in the back of the head.

Lately I have been finding myself getting a little more "feisty" or grumpy over things. Sometimes insignificant things, but most often when I read of the struggles of my fellow travelers here in the Forum and on the ACOR list serve. I get angry at incompetence of some of the doctors and nurses I read about, but more often I get angry at how this disease is attacking folks I now consider friends and even family - connected by blood in a very real sense. Although I don't think it is wrong to get angry with the disease, itself, I realize that I can't let these emotions take over. I have remarked in observing others how terrible it must be going through life as an angry person. I must guard against that. There have been times in the past where I have criticized others and then, later -- sometimes much later -- found myself behaving in the same manner. Perhaps we need to be especially vigilant as the frustrations of a chronic disease wear on us.

Two months after 9/11, I posted a very short piece on a 9-11 memorial page that ended up getting published. There I wrote about my frustrations and mixed emotions with the whole terrible tragedy. In that piece, I quoted a Native American story. I happened to run across it again today and it spoke to me all over again. Perhaps someone here will find it valuable.

A Native American grandfather was talking to his grandson about how he felt.

He said, "I feel as if I have two wolves fighting in my heart. One wolf is the vengeful, angry, violent one. The other wolf is the loving, compassionate one."

The grandson asked him, "Which wolf will win the fight in your heart?"

The grandfather answered, "The one I feed."

The origin of this story is unknown, at least I could not find it.

May we all feed the loving, compassionate wolf inside each of us.

Physically I am still handling the chemo very well. Last week I got four or five hours sleep each night which is much better than I have been doing. Again, no nausea! Perhaps some of the mixed emotions are the result of the high doses of steroids (I was warned about that very thing). My next blood tests are next Monday morning and then in the afternoon I leave for Waco. I will be there doing a technical assistance visit for one of the organizations we trained in a new protocol a few months ago. I will be there Tuesday, Wednesday and perhaps Thursday morning.

Well, I must go feed my compassionate mouse. Tomorrow will be a better day. Goodnight.