My Turn IV


John Wright

This article begins my lymphoma experience trail starting with chemo session two. I had improved new white blood cell counts naturally, putting me well back into normal range, but the oncologist wanted me to have the Nulasta injection anyway to avoid the precipitous drop in new white blood cells that happened the first time around (0.78 whatevers instead of 1.1 to 4.4).

Okay, chemo round two day one. I received all infusions/injections for round two in one day, except for the Nulasta, which was delayed as it would be for any patient to avoid having the chemo drugs immediately destroy quickly released immature white blood cells that result from the Nulasta injection. I had no notable reactions whatever to the infusions/injections, which is kind of expected given the fact I had three different strong steroids, not to mention Tylenol and Benadryl, to counter my body's natural reaction to the poisonous effects of the chemo drugs. I was fine with that.

Speaking of Nulasta, when I received it on day two of round two the nurse said I may well experience bone pain in various places starting five days after the injection and lasting about five days, said pain to be relieved with Tylenol, or if necessary, Tramadol, which I don't find to be impressive. We'll see.

On day two my morning BP was 120/75, with a pulse of 77. I did not take any of my regular BP meds until my BP got up to the range of 140/85. I feel a bit groggy today but so far otherwise okay. Actually, all of day two was pretty good in terms of appetite, constipation, etc. I really enjoyed having my oldest son and my daughter and granddaughter here to visit and help during this chemo round. The moral and physical support has quite a wonderful effect at eliminating my worries, and my sweetheart is equally important, so the combination was unbeatable. I feel pretty good.

Day three is essentially like day two, same as chemo round one, thanks to the prednisone doses of 100 mg per day. I sure don't look forward to Saturday when I go cold turkey from the prednisone, based on how I felt in the analogous time period in chemo round one. Truth be known, so far the physical discomforts of the chemo regimen aren't all that bad, except for the unpredictable fatigue. The real issue is, as you would expect, am I or am I not going to be cured of the lymphoma? That is the only essential item lurking in the back of my mind.

Having noted in an earlier article the psychological processes happening to me now I continue by noting that, while I want to be cured and to live a lot longer, I am both at peace with my life accomplishments, at peace with existence and non-existence, but curiously lacking in any game plan for how I want to live the remainder of my life if I am indeed cured, and gain five or more years to live in reasonably good health. I don't know what that lack of a plan means. Perhaps I am simply taking this one step at a time and letting results determine the amount of thought and energy I devote to plans for the future. At least that is my pragmatic approach to the present unknown. Conversely, it is possible that having climbed the mountains I chose to conquer during my life that I am now, as an older person, left with too few interesting challenges opposite my declining abilities, so I begin to find life becoming boring and repetitious. If so, my increasing laziness interplay with older age fatigue has come to play to my disadvantage.

Okay, I took a break from continuing this article, all the way out to day eleven. I figured I could remember anything important and do the continuation all at once, quickly. That sounds good until one realizes that they will not remember what they might have recorded but have since forgotten. Anyway, day six, the prednisone cold turkey day, was indeed the same as in chemo round one ... unpleasant with traveling transient pains, which I did control with Tylenol.

Interestingly, day seven started with no pains and I didn't need Tylenol until bedtime. No pains happened after that (wonderful!) until suddenly on day ten the nurse's warning about Nulasta bone pain was realized ... in spades! What rotten lower back pain! What rotten thigh pain in both legs! At one point I could not reliably walk without fear of falling. Pains also happened in other bone areas. But, sure enough, I took Tylenol and that, with multiple eight hour timed doses of 1 gm saved the day. The blog I visited on the Internet to learn about bone pain gave me very useful information regarding the experiences of other people, and that removed the fear factor for me. No need to call the oncologist's office. I learned that some patients obtained fine relief using Claritan ... why, I do not know. I have it but did not need it.

I did have a minor event with some small blood clots coming out when I blew my nose forcefully, as I typically do. I then remembered that lowered platelet counts could allow any stress to initiate bleeding. I became conservative and no further blood clots appeared during the day or night.

I woke on day eleven without pain of any kind. It is now mid-afternoon with no evidence of any type of pain. I feel rather normal. But if I have learned anything from the chemo experience so far it is that I cannot predict on any given day how I will fare in the pain department. I was pleased to remove my support stocking from my right leg for quite a few hours yesterday and today without any recurring edema. But rather than tempt fate I put it back on late this morning after showering. Overall I am wondering what happened to the bone pain? Beyond that I remember oscillating during chemo round one from fine to lousy and I'm wondering if that will happen later in this round two cycle. I am also very curious to learn on day 14 what my white blood cell counts will be.

This is day 13 of chemo round two and I have been without pain since day ten except for some minor pulsing pain around my port yesterday, and that appears to have gone away. I do note that physical exertion fairly quickly brings on fatigue and heavier than normal breathing, though only very briefly. I've had no sign of any infections or fever. I've had no bleeding. I feel pretty good ... almost normal other than what I've already noted. My appetite is fine and all foods taste normal to me. I am maintaining my weight at 198.5. Constipation is no longer a problem. Actually, after eating pork and sauerkraut I've had to deal with some minor diarrhea.

I experienced the onset of gout in my right large toe joint on day 14. Later that day I noted pain above my left ankle ... low shin area ... not necessarily gout, perhaps strain trying to walk on foot with gout. I started indomethacin with some minor concern about drug interaction with terazosin possibly impeding urine flow. That didn't happen by day 16. The left leg pain is gone. The gout is present but reduced and without significant pain, but my goal is to drop the indomethacin as soon as practical to do so. I am drinking plenty of water and being most careful what I eat relative to gout. The indomethacin is having the side effects common to me where I get light headed and/or become somewhat unsteady walking, which is not good, so I am being careful not to fall. Other than the gout related item all other things are fine. Alas, I may have brought on the gout by pigging out on the pork and sauerkraut.

I never did get to see the blood work results from December 4th as they never appeared on the patient portal web site. I let the oncologist's staff know that on my day 14 blood work and was told they will check it out. Thus, on day 16 I am waiting to see blood work results from both chemo round two day and day 14 of chemo round two. Yes, I do have some minor worry when I do not get to see results. Also, on chemo round two day the PA didn't get to see those results either during the time we were with her. This remains a mystery. But in five days more blood work will be done on chemo round three, and we will get to see the oncologist that day, so answers of one sort or another should be forthcoming.

The blood work results from day 14 came in on day 17. No low lymphocytes reading this time. I'm up in the normal range. Of course, my total white cell count is quite elevated relative to the normal high end. I rather expect this. So, once again, the oncologist can answer my question(s). For example, will I need another round of Nulasta? Is there any problem with the overall elevated white cell count?

I'm feeling so normal that today I went out and bought a new battery for my sweetheart's SUV. Then I installed it. Doing something normal felt great. And the timing was critical as we are to have bitterly cold weather starting in less than a week ... one morning the forecast is for -9 degrees below zero. I don't get to escape that cold spell completely as Christmas interferes with my normal 21 day chemo cycle so on day 23 I will have chemo round three. And that morning the temperature will be a balmy 11 degrees.

On day 18 I feel fine except for having to continue the indomethacin to avoid the gout irritation. I am not pleased about that, but the pain would be even worse. There is a lessening of the irritation and more mobility so I hope I can stop the indomethacin soon. Okay, the irritation was about done on the morning of day 19. No more indomethacin. There is some numbness in the toe joint and in the adjacent pad areas next to the next two toes. Interestingly I am experiencing miscellaneous transient pains similar to but of less intensity to what normally happens on day six, when I've ceased taking prednisone. Perhaps the indomethacin, as an NSAID, has taken on the role of the prednisone in stopping transient traveling pains. That would make sense.

What is happening now on day 19 is fatigue, transient pains, diarrhea and unexplained back and leg pain. I think this is just a bit of the bone pain discussed earlier but of less intensity. My conclusion is that the day 17 or 18 of the last chemo cycle is when I started feeling a lot of fatigue and reduced appetite and recurring pain ... which seemed to magically disappear the evening of day 19. I'm hoping that happens now. In any event, I am noting the similarity of symptoms for the days after chemo round one to chemo round two. The two differences between chemo round on and chemo round two are the bone pain from the Nulasta injection, and, a markedly better energy level prior to day 18 for chemo round two.

At last, here it is day 23 of what is typically a 21 day cycle. Tomorrow I will have chemo round three. The past four days have been a pain ... low energy, burning feeling when I pee, eyes burning and tearing on the outside edges. I thought at first I had a bacterial UTI. I called the on call physician on Christmas day to report that issue, and at the time, since I have some Cipro, we decided I should take it for up to three days and let the oncologist decide on chemo day what to do. Then I rethought it and concluded that the eye issue combined with the burning during peeing most likely suggests a virus, not a bacterial infection. There is no cloudy urine and no discharge from my eyes, just tearing with some burning. I will take up this subject tomorrow morning with the oncologist at the start of chemo round three.

On the good side, I note that constipation or dry stool was not a problem during chemo round two. If anything I had to watch to avoid diarrhea. My sense of taste and smell are now somewhat affected, for certain foods are less interesting to me and I've lost some sense of smell/taste for things I like. Thus, my appetite in the last four days has been marginal. I eat because I have to, not because I am hungry. Okay, enough of this drivel.