Absence from those we love is self from self - a deadly banishment. - William Shakespeare
I want to apologize for the long delay in updating this blog. The realization that this process went from being something difficult to the most difficult thing I've had to do was cause for some reflection. And as I again sit in a recliner at Dr. Lee's office being tended to by the best staff I can imagine exists, getting that Rituxan that begins my fourth chemotherapy cycle, I'm provided with a great opportunity to end the posting drought.
Thought I'd list the purpose and side-effects of each drug I get, as I get them, in this 'Course B' that I'll be getting this week - just for grins. So today is the Rituxan. Rituxan's purpose, as I understand it, is to interfere with the growth of cancer cells and slow their growth and spread in the body. Tumor cells (like most normal cells) have receptors on their surfaces. Molecules on the outside of the cell can attach to these receptors. When they do, they can cause changes to occur within the cells. One receptor, present in more than 90% of B-cell non-Hodgkin's lymphomas, is called CD20. Molecules that attach to CD20 can affect the growth and development of the tumor cells and, sometimes, the production of new tumor cells. Rituxan is a man-made antibody that was developed using cloning and recombinant DNA technology from human and murine (mice or rat) genes. Rituxan is thought to attach to the CD20 receptor and cause the tumor cells to disintegrate (lyse). In some non-Hodgkin's lymphomas, it also prevents the production of more tumor cells. Rituxan was approved by the FDA in 1997.
The most common side effect of Rituxan is a constellation of symptoms (fever, rigors and chills) that occur during administration of the first dose of drug. More than 80% of patients experience these side effects, and it is severe in 4-7 out of every 10,000 patients. The side effects appear only 40% of the time with the second dose of drug and decreases even less frequently with the subsequent doses. Other common side effects related to Rituxan are nausea, hives, fatigue, headache, itching, difficulty breathing due to bronchospasm, a sensation of swelling of the tongue or throat, runny nose, vomiting, decreased blood pressure, flushing, and pain at the site of tumors.
After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituxan.
Irregular heart rhythms and infection are two other rarely-occurring side effects that may be severe. The irregular heart rhythm usually begins soon after the administration of the drug, while infection may develop from 30 days to 11 months after the end of therapy.
Severe decreases in red or white blood cells and platelets may occur rarely with Rituxan therapy. Generally, Rituxan is avoided in the presence of active significant infections.
Rituxan therapy is not recommended if there is an allergy to mice or rats since Rituxan is made in mice or rats and may contain minute amounts of rat or mice proteins that can lead to severe allergic reactions.
Other than that, Rituxan is pretty "low-key." Rituxan is pretty good to me. My most severe reaction was on the first time. And, as I said long ago, I take everything relative to other experiences I've had - so Rituxan is a walk in the park compared to the excitement to come this week in Course B. Getting the Rituxan takes about 3 to 4 hours, depending on reactions. Once I am "done" with the planned eight chemotherapy cycles that I have to be hospitalized to do, I will continue to do Rituxan for about two years.
My last several weeks have not been bad. The lack of writing to the blog was more the result of spending the time recovering, thinking, and being with family. On the recovery front - it took me until just a few days ago to get my blood counts back into the 'normal' reference ranges. Proof that these rather expensive drugs really are doing something. Speaking of 'proof' - last Monday I underwent a PET/CT scan. The PET/CT scan machine and scan image (not mine) looks like this:
Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations. The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths. Alone, each imaging test has particular benefits and limitations but when the results of PET and CT scans are "fused" together, the combined image provides complete information on cancer location and metabolism.
A PET scan is completely painless and has no side effects. After fasting for 4-6 hours, you receive an injection of a trace amount of radioactive glucose, which is distributed throughout the body. About 30-70 minutes after the injection, you empty your bladder, then lie down on a scanner bed. Images will be taken of your body as you lie still on the scanner bed. About the only thing I could imagine being difficult is if a person is claustrophobic.
You don't learn of your results until you see your oncologist, which for me was this last Friday. My results show that the cancer cells are, for all intensive purposes, gone/nearly gone. That, of course, is good news. Doesn't change the plan to do eight cycles or anything, but it does show that things are working. Although it is definitely cause for thanks to God for the progress, and thanks to all those who are supporting and treating me, we are not out of the woods yet. In fact, being out of the woods will be a LONG time coming - five years of not relapsing after this treatment is all done will be a true milestone to celebrate. But this PET/CT documentation that progress is being made is outstanding news. The unfortunate thing is, mantle cell lymphoma (MCL) is a tenacious son-of-a-gun and likes to come back.
That said, that tenaciousness is the reason I am going for the full eight cycles of this R-Hyper CVAD chemotherapy. The theory being, again as I understand it, to make the body 'forget' all about MCL by bombing the crud out of it - beating up the bone-marrow that produces all your cells to that point. Anyone who saw me at the beginning knew that the drugs were doing something - the very first cycle causing my visible tumors to disappear and changing my actual appearance to something closer to what I normally look like.
That sums up the 'recovery' part of the last few weeks that I've been absent from the blog. The thinking and reflection over the last weeks has been, well, interesting. Interesting for the reasons that I'm being challenged, that I have really begun to miss and think about my vocation as a state trooper, that I am beginning to formulate and implement the changes this experience is causing in my thinking and way of living, and that I find myself woefully inadequately equipped to express my gratitude to the incredible outpouring of support I am getting.
Related to thinking, my experience with chemotherapy has been many things already for me. And one of those things has been the realization that man has, through the use of chemicals/drugs, found a way to alter humans. You can literally feel the change in my opinion. I guess I shouldn't be so surprised - after all, I have occasion to arrest people who have turned to using drugs whose loved ones say they only recognize them because of the physical resemblance of the person in handcuffs to the person they once knew. But now I have a personal experience. I think I'm still recognizable to those who know me, but I am without a doubt changed.
I think some of that change isn't just because the drugs are designed to work on a person's DNA, but because having cancer gave me time I never would have had just laying or sitting around unable to do much else but think. That kind of focused thinking, where you can't do anything else, proved to be a powerful thing for me. Something that recurred during these last few weeks for me was a sense of the mind going from an orderly and controlled thing to a complicated and utter jumbled mess. The strangest part of that for me being the visualization of being able to "see it" as if I was looking at a representation of the thoughts. That transition from orderly (the way I like things) to a mess was a little disconcerting at first because I felt compelled to solve it quickly.
What I figured out is that it didn't need to be solved quickly. In fact, it didn't need to be solved at all. Then this exercise became fun because what it feels like is that there is this discombobulated puzzle that pretty much "looks like" a junk pile of objects that represent everything - ideas, fantasies, plans, things remembered, things that I'd forgotten... - and one by one I take those things and they get put back in their place. What was originally difficult for me was an anxiety I felt because I'm one that has a place for those things and something had happened to ruin that order. My "memory palace" had been blown up.
In the early 90's I had the fortune, through a family member, to have dinner with Dominic O'Brien. Dominic was at the time, and has been several times since, the World Memory Championships winner. As a result of that dinner I had a few more opportunities to talk to him and learned the concept of creating a memory palace which has served me well throughout my life. Many of you reading have likely heard of the memory palace idea and probably use it as a memory device. If you can imagine all that information put into a unorganized pile all of the sudden, you can understand my initial cause for alarm. Lest anyone is worried, I'm no crazier than I was before.
I truly miss my work. I have been doing a few things for my work as I was granted the opportunity to work 'light duty' but I miss being in a patrol car and doing the work of a State Trooper on the roads of the county I live in. It is truly a job like no other and all of my brothers and sisters in law enforcement understand how I miss it. Most all of those that I know in the profession start to feel the need to get back to work towards the end of their weekend (I know I almost always did). To be away this long is torturous.
It has been nice, however, to be around family and friends as much as I have been. Granted, I'm often not able to be around anyone because of my lowered immunity or not feeling good, etc. But even when I'm 'sick' I am still around and it is nice to just hear my daughter playing. I am incredibly blessed with the wife and daughter I have - it will always bother me most to think about the possibility that I might not be there for them someday. That is by far the hardest part of having MCL I think - the knowing that the average statistic is against a person and that that translates to things like not being there to answer your daughter's questions in life or sit on the patio with your spouse in retirement. I am so thankful to be taking action against this disease.
Well, I'll wrap up here. My Rituxan dose is done and I am going to enjoy the rest of this day because tomorrow starts the real fun at the hospital. I will be posting regularly again - thanks for waiting for it.
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