Sunday, May 11, 2008

Halfway Done

Dave’s Great Adventure, Book Three
Chapter 3, Verse 1
May 11, 2008
Halfway Done.

I’ve been extremely delinquent in getting my updates out. I’ve promised numerous folks over the last couple of weeks that I was going to get a letter out but I just haven’t gotten it done. Laura, of TNT, told me that I didn’t have to write a novel each time I sent out an update, that a short memo would do. Anna, who is traveling back and forth to Houston with husband Larry, for his experimental Avastin treatments, is able to send out complete updates in about six sentences. I should be so economical with my words! But in fact I seem to think that I have to write The Great American Novel with each letter because I have so many thoughts running around in my head. However, I haven’t been able to make myself sit down and organize them of late. I guess the drugs are catching up with me. I’m starting to feel more fatigued on a regular basis, am having more trouble keeping my thoughts together, and am beginning to require a period of rest just about every afternoon, like I did for months before I retired and then for a year or more afterwards. I finally came out of my mental fog of “chemo-brain” in the last year or so, but I think it’s coming back.

I really didn’t expect this because I haven’t had the “fuzzies” this time around, a condition long-time readers will remember me describing after each prior round of drugs. During the mental “fuzzies” I couldn’t read the paper with comprehension, remember much of anything and mostly I would just lie around the house for several days until the symptoms slowly went away. I expected to get the fuzzies again, since I’m getting basically the same FCR (Fludara, Cytoxan, Rituxan) regimen I got several years ago, and then, on top of that cocktail, I’m getting the Avastin too. But since I didn’t get the fuzzies I expected that I’d avoid the chemo-brain this time around too. I think I was fooling myself. I have to wonder if the lack of large doses of steroids with each day’s infusions has something to do with the absence of the fuzzies with this new regimen.

Anyway, my lack of communication didn’t mean that there were any serious problems; just that I was tired and/or lazy, and a bit busier than I should have been at times. I haven’t really been ill, haven’t gotten a cold or bronchitis or anything, and even my sinus infection has cleared up. I’ll try to do better with updates in the coming weeks.

The last rounds of drugs went pretty well. The first day was very long again, lasting eight hours because of the four hours it takes just to give the Rituxan, which is then followed by the Fludara and Cytoxan. The next two days went much faster though. But I was getting sick by the end of the second day and felt really pretty bad before we even started the third day’s infusions. I was extremely tired and had a splitting headache and queasy stomach, feeling much like I had a bad migraine. I treated the headache like I have in the past with reasonably good results. The headaches usually decline in severity over about five to seven days after the infusions and the fatigue subsides along with the headaches. I still have all the joint aches and am still slowly shedding my hair, but the fatigue is just a bit worse than before.

My blood counts through the last cycle haven’t been too bad. My nadir, or low point, white blood cell counts weren’t as low as they have been in the past, and my platelets and red cell counts have been holding steady. I haven’t required any Neupogen this cycle, which really surprises me, because I would have expected that my counts would continue to decline with each round of chemotherapy. But in fact my white counts last Monday were the highest they’ve been since the first week of the first round of this new regimen, back in February. Not all that high, really, at 2,500, but my counts haven’t been above 2,000 without the help of Neupogen since we started. And even though my counts are up a bit, the lymphocyte counts remain low, at 200. So the stuff is working, but for reasons I can’t explain, it’s sparing my neutrophils and monocytes, the white cells that take care of bacterial infections.

Since it’s been a lot warmer and the flu season is over, we’ve been getting out a bit more. I haven’t been quite so paranoid about being out among crowds or in restaurants. We’ve made it to church (sitting across the sanctuary from where the families with the small kids usually sit) and have been able to eat out and see the family on a fairly regular basis. We even went to a Roger Waters concert (he being a former member of the band Pink Floyd; I’m sure my mom will now immediately recognize who he is!) in Dallas. The music was great but it was ear-splittingly loud where we were sitting. I was wishing I had brought the ear plugs I had intended to bring but forgot (because of my chemo-brain?). One benefit of the concert for those of us involved with chemotherapy was that there was a lot of medicinal mary jane in the air around us. Wow, I haven’t had any nausea since the concert! But I’m always hungry….

The next couple of weeks will be busy for us. We leave on Tuesday to go to back to Houston again, this time for my “mid-protocol” examination and evaluation, with labs and a bone marrow biopsy. If things are going as expected and they don’t think my side effects are too worrisome, we’ll return to Denton next Thursday afternoon and start Round Four the following Monday. I had the option of doing the chemotherapy in Houston, but decided I didn’t want to have to travel the three hundred miles back to Denton feeling as badly as I did after my last course of drugs. Now that I have more confidence in the local nurses I’d just as soon get the drugs here in Denton and be able to go straight home to rest and recover. We’re going to Houston a day earlier than we have to because we’re going to try to see the nearby NASA museum while we’re there. Whether we actually do or not will depend on how tired I am after we get there. My experience with our little overnight trip last month makes me suspect that I’m going to be more tired than I would like. We’ll see.

And that’s about all for this time. I’ll try to get another short update out after we return from Houston at the end of the week but it may depend on how tired I am and what all we have to do to get ready for the start of the fourth (of the six planned) round of drugs. Wish us luck on our trip to Houston this week.


A baby asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there, being so small and helpless?
“Your angel will be waiting for you and will take care of you.”
The child further inquired, “But tell me, here in Heaven I don’t have to do anything but sing and smile to be happy.”
God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”
Again the child asked, “And how am I going to understand when people talk to me and I don’t understand the language?”
God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”
“And what am I going to do when I want to talk to you?”
God said, “Your angel will place your hands together and teach you how to pray.”
“Who will protect me?”
God said, “Your angel will defend you even if it means risking its life.”
“But I will be sad because I will not see you anymore.”
God said, “Your angel will always talk to you about Me and will teach you the way back to Me, even though I will always be next to you.”
At this moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.”
“You can simply call her, ‘Mom’.”