My Turn III

by

John Wright

This article was prepared starting one week after my receiving the first of six chemotherapy sessions for my diffuse large B cell lymphoma. My objective was/is to capture and share the experiences of the various after effects of the R-CHOP chemo drugs, well, at least the first round of them. Thus, I can report my physical reactions with fair accuracy while the memories are fresh and compare them to what I read about side effects. My goal is to keep a log of my experiences to track changes as I proceed through the course of six rounds of chemo. This article is, de facto, the first part of that log. I figure the capture of my physical reactions will be a better indicator of what others like me will likely experience, rather than relying on the generalities of documents provided by the oncology center that address multiple types of cancer.

Rather than getting all four chemo drugs in one day, the oncologist decided to give me the four hour infusion of Rituximab on the first day and the remaining three drugs (Cyclophosphamide, Vincristine and Doxorubin) the following day. I believe that was prudent as, being an old fart of 73, he couldn't be sure I'd respond well to getting the whole enchilada in one day. As it turns out, my taking of prednisone prior to the infusion, combined with the drugs given to me to minimize immediate reaction to the Rituximab; acetaminophen, Benadryl and a shot of hydrocortisone, caused me to have no reaction whatever to the infusion. I liked that. Oh, I was instructed not to take my normal morning blood pressure meds prior to the infusion as Rituximab can cause major lowering of blood pressure, hence I could have been in big trouble from low blood pressure.

So much for day one. I returned home apparently no worse for the wear, and grateful for the state of the art choices in anticipating and addressing potential side effect problems before the fact. These folks do appear to know what they are doing, and they are doing it well, at least from my layman's perspective. I might add that building the confidence of the patient early on is wise. Let's move on to day two infusions.

Similar to day one I was given acetaminophen, Benadryl and then a shot of some anti-nausea drug that I was told would last for three days. I was also given a small dose (1 mg) of Ativan, which is typically used as an anti-anxiety drug, but in this instance it had a different purpose, of which I cannot remember, and for which I have no easy frame of reference. And, good grief, I was also given a real horse of a steroid, dexamethasone. Then the infusions/injection took place, again with no notable reaction whatever. Thus, home again, apparently no worse for the wear. This lack of reaction allowed me to eat whatever I chose rather than following the general diet recommendations, and I suffered no obvious consequences whatever, and certainly no nausea. I did start to note the presence of something in my body that kind of put me in a spacey place ... not energetic, not really with it, but certainly not in any kind of significant discomfort.

Alas, all good things come to an end, to be replaced with, well, whatever. Once I completed my five days of prednisone I expected to have some problems, though I had no idea what they might be. On day six, without the prednisone, I gradually started to experience traveling pains and aches in different parts of my body, primarily on the right side (the lymphoma areas) and in my throat and neck glands, eye socket and head, as in headache. I dealt with the pain, choosing to get a feel for how bad it might get, untreated, so I waited until day seven to take acetaminophen for pain relief. Prior to taking the acetaminophen I was miserable as the pains never really went away ... they just kept traveling around from place to place. But the acetaminophen, once taken, worked wonders in eliminating the pain.

I was less energetic than before but not as wasted, fatigue-wise, as I had been led to expect. Of course, my oncologist, Dr. Danny Sims, did say that the fatigue issue becomes more pronounced in later chemo sessions. I'm not terribly happy about that because at this point I can simply rest and not mind spending so much time resting. Oh, I am also supposed to get some exercise, so I decided to use my treadmill on a relatively slow speed (2 mph). So I did, and I actually felt a lot better after the exercise. This I note for future consideration. I'm also doing a lot of reading during my down time and given good books that is an activity I do enjoy.

Daily dosages of acetaminophen have to be limited, and I aimed for an upper limit of 2.5 grams per day. This meant that one time I could have two 500 mg caplets and then a single 500 mg caplet at intervals of six hours thereafter. That latter dosage level is barely enough, but it does help control general discomfort. I plan to talk with my oncologist about acceptable dosage. Yet, here I am at day eight and I've chosen to take no acetaminophen, for the pains, while somewhat present, are endurable without medication. Then again, by the early morning of day nine the pains are irritating enough that I finally took one acetaminophen caplet.

Now I move on to the essential patient problem with the chemo drugs, starting immediately after the first infusion. The reality of constipation is no joke. It is essential to take laxatives and stool softeners to keep things moving. I struggled a few times until I recognized I have no choice. Thus I now take whatever I need to guarantee emptying out every two days. This concerns me for down the road when the chemo sessions are done. Will I have to continue drugs for constipation simply because of my body getting used to them? I hope not.

The chemo drugs wipe out a lot of white blood cells, making the patient very vulnerable to infections. Thus, on day eight, knowing my white cell count will bottom out on day fourteen, I am noting that I will very soon be wearing a mask (maybe) and being religious in hand and other cleanliness. Wouldn't you know it, my sweetheart Peggy goes out to do grocery shopping on day four, picks up a cold, so we can't be together, but it looks like I'm catching that cold anyway at day seven. I am not pleased. I will delay trying to include additional information in this article at this point until the events actually happen ... Okay, day nine and I do not have any cold symptoms. Meanwhile she is starting to get over her cold.

Here is an important aside to the main thrust of this article ... One would surely ponder how I feel inside at a psychological level about this experience. As I get further into it, am I not worried, or am I worried, or am I something else? This is more the kind of reflective thinking you might expect from me in my writings. Anyone can recount events and symptoms but the reality of cancer is something that cuts deep into my thoughts, the point being, will I live or die? For that matter, how do I feel about the potential for dying? At this point I simply want to let you know that much of my thinking, when I am not entertaining myself by reading or eating or conversing, is quietly but openly addressing my possible demise.

I happen to be reading a wide variety of books for my entertainment while in a diminished energy state with chemo, and a few of those books hit on philosophical and/or psychological topics pertinent to my thoughts at this time. I kind of feel a kinship with the many people before me who contributed what they could in their writings to the benefit of humanity but, like everyone eventually does, they died. This quiets me, particularly when I consider the decline in my abilities and especially my level of energy, and thus my useful output.

Actually, my main regret is that I have acquired so many things to play with that I no longer use ... I want to use them but somehow I lack the available time and energy ... and I fail to think about them except occasionally, and then with regret rather than fond memories. After all, my fun experiments with food are not rocket science. If my progeny or friends decide to carry on my food interests, let it be their interest, not my leftover stuff. Food Nirvana can live on to honor Marie if they so choose to maintain it. Ditto my writings related to Destiny©. The important thing is that I made the effort to capture my thoughts and interests long before I became ill. Thus, my "legacy" is already in place. That is most satisfying.

I asked myself what mountains I want to climb with the remainder of my life, whether I last twenty minutes or an additional twenty years? The answer is that my energy level, combined with my satisfaction of what I have accomplished in life, let me know that I have no further untouched mountains of interest, only smaller age appropriate stuff. The great things that can and hopefully will happen for humanity are the domain of those younger, better educated and of higher native intelligence than me. Yes, I have had my turn and for that I am happy and grateful to have survived the various life issues of many kinds that might have destroyed me. So, do I want to die soon? No, I do not. I enjoy my remaining time now and I hope to continue to do so, with the caveat that physical and/or mental misery may at any time reverse that stance completely.

Interestingly I spend little time thinking about the efficacy of my chemo treatments. At a practical level this simply means I am not in control or trying to be in control. This time around my fate is not in any real sense in my hands, and I am okay with receiving what I believe to be the best treatment available to anyone, with the exception of the Gilead Sciences® genetic engineering method to reengineer the patient's own T-cells to recognize and then kill the large B cell lymphoma cells. And for that? Simply consider my earlier words ... Know that I am coasting, not producing, so I have no sense of being cheated out of the most recent (and expensive) method of curing my lymphoma.

Okay, here is an update of what has been happening physically during the second week after chemo. In short, ugh! The acetaminophen is less effective at eliminating the traveling aches and pains in that it doesn't last for many hours. The constipation has become a concern as I'm never sure what is actually appropriate for me to take in stool softeners and laxatives. Today I will visit the oncology center for blood work to check my white cell counts and I will ask pertinent questions related to pain control and constipation. Note that I already know I can't use opioids for pain relief without making the constipation problem worse.

The aches and pains scenario is unpredictable. Some days I have none at all and I know not why. I'm annoyed that I was not informed before the fact that these pains would happen. I learned to my relief via a British blog site that my experience is quite typical for patients with my type of lymphoma being treated with R-CHOP.

Oh, here is a real zinger ... we patients are told to watch out for fevers as our white blood cell counts are significantly reduced two weeks after infusion (thereafter they presumably return to normal within a week, just in time for the next infusion). Infections that might happen with low white cell counts are taken very seriously and treated aggressively. In any event, I've monitored my temperature for a week, noting that I am typically sub-normal. That may be due to the use of acetaminophen. Yesterday I felt cold in my extremities so I climbed in bed and turned on my electric blanket to high heat and a pre-heat cycle. My, I felt good in no time, and for a while I kept the blanket on. Then, removing it I proceeded to do other things briefly, but then check my temperature. Good Grief! It was right up in the fever range where I was supposed to take acetaminophen and call the doctor. Thus, I did, and since I had no chills we decided to wait for an hour to see if my fever got worse or better. One hour later the fever was reduced to near normal temperature so it was clear that no serious infection was behind the fever. Then, I realized I did it all to myself unwittingly by what I did with the electric blanket! Yes, I feel foolish.

My appetite has remained good, or at least it did, until my most recent bout with constipation. I have had some success going but I have had more abdominal pain this time around and I have not experienced the typical cutting loose of everything, as in temporary diarrhea, so I am for the moment suspicious of my condition. I don't have pain now, but ... Today I will try to get some useful direction from the oncology folks during my blood test visit. In short, I am looking for explicit directions, not generalities. Conversely, I am partly, perhaps mostly responsible for my constipation problem as I have not in any way restricted my diet, and, I have not been getting enough physical exercise on the treadmill to help alleviate constipation. I will work on that, for periods of constipation are miserable.

Okay, one week to go before round two of chemo. I'll update this article with what happens during the coming week. For example, the blood work today showed I am not producing new white blood cells as much as they want to see, with the caveat that by next week the retest may be fine just prior to round two of the chemo. If not, there is an injection (Nulasta) they will give me the day after the chemo infusion to stimulate production of new white blood cells. I know nothing about that injection but something in my memory of the past triggers a fear of some lousy side effects. We'll see. I'll do some research.

Okay, no potential bad side effects were listed for Nulasta. Good. And now on day sixteen I feel pretty normal. Just before traveling to my appointment, I had major diarrhea, thus clearing up my constipation concern. But I achieved that only by taking more laxative (Dulcolax) than listed in the directions. I experienced abdominal pain after the fact which has finally, by day seventeen, pretty much gone away (good, no infection). And I feel good physically. In fact, yesterday I did more time on the treadmill at a faster speed. And I processed a turkey carcass to make soup. And I've been staying up later at night as my energy level has increased. My appetite has returned.

I gained little or nothing at the day fifteen appointment regarding pain medication information ... the Physician's Assistant (PA), Kathy, said the next level up in pain relief is Tramadol, which I used some years ago for a pinched nerve problem, and I found it to be utterly useless. The PA responded to the laxative question by recommending Miralax. But back on day one the oncologist preferred Senecot. In short, there is no single answer. But I failed to ask about the enema choice. My error.

I am by choice remaining sequestered in my home, totally avoiding contact with the outside world during this period of very low new white blood cell count. I do wash my hands more often, but to be candid, not all the time. My worst concern was the day fifteen visit to the oncologist's office ... sharing a waiting room with a dozen other patients and keeping my hands totally away from my face. The PA agreed that it is prudent not to be exposed to other people, especially if they are ill. Anyway, we'll see what happens in five more days with new white blood cell results from the blood work to be done on my round two chemo day, prior to the chemo infusions.

It is now two days before chemo round two. I feel lousy once again. I've been going downhill for a few days. At least I'm not having a constipation problem. As of now, no energy and I often feel like a cold is starting, but it doesn't fully develop. I have some aches and pains and I'm not sleeping well. A few minutes ago I finally took two Tylenol to combat feeling lousy, for I have to make a beef barley stew today as Ray, Jr. and Patty and Jackie are arriving later today. I have no energy whatever to do this but I'll do it anyway. This is not the way I expected to feel right before the next round of chemo. At least I have not experienced any fevers this past week.

A respite has occurred. After the family arrival I did eat a decent dinner and I started to feel better. I actually made the stew with Peggy's help and I made some home made rice pudding and ate both at dinner. The pains and fatigue were less of a problem, though I did retire early as usual. Peggy made some fine Jordan Marsh Blueberry muffins, later enjoyed by all. Moving on, on day 21 the pains were gone and the fatigue okay, but I felt light headed off and on through most of the day, until dinner. Ray and I went out and got a christmas tree, which was then set up and trimmed in the family room. Nice tree, very nice job of trimming. That makes me feel much better.

Overall it is clear to me that a significant portion of feeling bad physically has a psychological basis. The visits by family make a big difference to Peggy and especially to me. I, however, have to stay alert to keep Peggy from slipping into depression and anger, for at times she feels left out. I don't think this would be happening except for terrible relations between her and her children and some of their family members, for absurd reasons and all the blame residing on her family, not her. She has a heart of gold but more often now, as the holdays approach, she becomes short tempered with me. Then again, there are also times I become short tempered with her. But worst of all is she needs to feel included in everything that affects me, so it is incumbent on me to sensitize my children and require her inclusion and demonstration of honest and sufficient consideration for her feelings (the latter of which is no small task for stated reasons). Per usual, life can be a challenge.