My Turn VI


John Wright

This is day two of chemo round 4. Yesterday was a great day as we learned about the CT scan results from my oncologist, Dr. Sims. Bottom line ... All lymph nodes are now clear of any evidence of lymphoma. He was very pleased, as were we. The short answers to the obvious remaining questions are these: 1) We continue with the remaining 3 rounds of r-chop chemo to wrapup this campaign and 2) Dr. Sims did not say that all lymphomas were gone everywhere in my body, but they were definitely shrinking, and there was nothing new found since the pre-chemo PET and CT scans early last November. Yes, this is clearly very good news.

Last August my NH PCP, Dr. Timmerman, told me that some most common lymphoma tumors, because they are so aggressive, typically outgrow their own blood supply and die. In short, blood vessel growth can't keep up. That is a fine thought, and one that was borne out from the later biopsies of my right axilla. Lots of necrotic tissue. Nothing useful found for analysis until an entire lymph node was excised for biopsy. And at that point an egg sized dead tumor was removed along with the lymph node. Necrotic tissue of different types is gradually and typically absorbed and eliminated from our bodies in various ways so the expectation of the PET scan to be done after chemo round 6 is that any tumors formed, right from the beginning, should be pretty well gone, and that no new tumors have happened.

This then is a time of celebrating, mid-course, but with the good sense to realize the battle is not yet over. We must wait until mid-March for the PET (and maybe CT also) scan and take it from there. And along with the relief of this mid-course check-up is the realization that I have serendipitously (and obsessively, carefully) avoided any serious side effects from the chemo drugs, and I have not contracted even as much as a cold, nor have I experienced bleeding. Such variations from the normal blood test ranges for creatinine, hemoglobin, platelets, neutrophils, etc. have been addressed successfully. Nulasta has been used to stimulate development and release of the new white blood cells, the neutrophils, and the hemoglobin and platelet readings are well within acceptable ranges given chemotherapy side effects. The kidney related creatinine readings jumped but I personally got that under control with pushing a lot of water, limiting salt intake, and keeping by BP diuretic from dehydrating me immediately prior to doing the blood work. I was able to force the creatinine back into a normal range.

I elected throughout rounds 1 through 3 to essentially quarantine myself four days prior to the nadir in each cycle (day 14 of each 21 day cycle) for low neutrophil blood counts. I would then relax that restriction in the last day or two before a new chemo round to at least do some grocery shopping. That meant I entertained having no visitors during my most vulnerable periods. Thus that meant no contact whatever with anyone except my sweetheart, and that very limited and controlled, especially when she caught a cold and had to sleep in separate quarters. And there was very limited affection displayed, carefully, during that period.

Yes, I was obsessive, and at times I have been bored (as well as boring!). I was also completely successful. I learned long ago to avoid the public, expecially crowded areas, and to avoid restaurants or any other foods that may have been contaminated by individuals with currently active cases of colds or flu or any other illness where undesirable organisms could be inadvertently passed from them to me. If I have to eat something raw it gets thoroughly washed first. Otherwise, all food gets cooked to temperatures to kill any living thing prior to me eating it.

Oh, yes, I have to include another most important item ... that of how I control anything getting to the vicinity of my mouth or my eyes or my nose. In short, I do not touch myself directly in any of those places with hands that have been "who knows where?" touching surfaces that might be contaminated with bacteria or viruses or even fungal spores from any source. If necessary to clear an itch or eyes watering or mucus from my nose I use a paper towel or tissue for any necessary contact as a blocking agent. I also use alcohol based waterless hand cleaners at home. I avoid touching toilet handles or seats with the inside surfaces of my fingers, at home and in public places. Thus, I backhand everything in those circumstances. My hope is that I avoid self-contamination from any source going into me in the form of food or getting into mucus membranes via external contact.

I have stressed the above discussion of quarantine and handling measures for a very special reason beyond the obvious. People who are not experiencing any cancer and who are not taking agressive chemotherapy drugs that lower immunity still get violently ill from items like flu. And the very young, or the elderly, like me, are the most frequently the ones who die. Well, I have been practicing the limited/no exposure stuff for many years as a matter of principle. While young I made no effort to control being exposed as I knew each illness I contracted would mature my own immune system. So I would at times get sick and be quite philosophical about it. I had a solid reason to let nature take it's course, except when I had nasty illnesses like strep throat, which required an antibiotic. This also meant I avoided all vaccines for items like flu, pneumonia, shingles, etc. while young. And in fifty years of so doing I contracted the real old fashioned seven day flu only twice, and dealt with it highly successfully. I also had one bout of pneumonia, about three years ago, treated and resolved via an antibiotic.

Times change as we get older. One thing we do is get more diagnostic work to preclude nasty surprises from diseased or failing organs or other issues. And now, at my age, I am getting my flu shot, I have gotten my pneumonia vaccine (one of two), and I have been vaccinated to avoid shingles. Now is the time of life where my immune system will not be as responsive to new strains of bacteria or mutated viruses. Thus, I am typically very ready to seek all the protections I can get that make any sense. If you consider my hand and other crowd avoidance practices described above you can note that I've done them for many years and continue to do so. But I find alcohol wipes in places like supermarkets to clean cart handles to be the domain for the stupid. That damned produce or almost any package you lift using your hands will easily contaminate you after you have played the game with the waterless hand cleaner tissues. In short, I do ignore the palliatives for the ignorant.

Finally, I should note that my attention to nutrition has been careful during my period of chemotherapy. As I've had no side effects like nausea to keep me from eating whatever I want, I eat what for me is a normal but somewhat more careful diet when it comes to ingesting fried foods and quantities of things like red meat that can provoke other issues. And I have carefully added in food items to assure roughage and varied and good sources of vitamins from fresh fruits and vegetables, even lactose free milk, where I typically would avoid milk entirely. My appetite varies a lot within each chemo cycle, and that is expected. I go with the flow, along with monitoring what I am doing, and as necessary forcing some careful intake of good foods even when I am not hungry. This behavior is probably the primary reason I have experienced essentially no weight variations from the beginning of chemo round one. It has been "steady as she goes."

Okay, well, almost. Tonight we had homemade chicken and rice soup (okay) but also grilled pastrami and swiss cheese on seeded grilled rye bread with deli mustard, along with hot garlic dill pickles and other crazy stuff, topped off with a double cookies and cream Magnum Ice Cream Bar! Yeah, health food all the way ... I think maybe I best watch my "celebrating."

Day 3 of chemo round 4 and all is pretty much as expected. I saw my chemo day blood work, with which the oncologist found nothing to worry about, and as usual my blood glucose is a bit high, ditto my creatinine at 1.52, and my hemoglobin is lower, as expected, at 10.8. The idea is the hemoglobin gradually diminishes during the entire chemo series, which is the fundamental reason fatigue becomes an increasing reality until the end of the series. Thus, we were told at the beginning that the more chemo rounds that get done the greater the fatigue level, such that by the end of the series good sleep will still find the patient waking in a fatigued state. Said fatigue is also expected to become history after the chemo series. The expectation is that one month after the series is done the patient will feel much better but not be completely back to normal. That takes more time.

The best part is that my oncologist is fine with my present bloodwork as nothing is in a dangerous range nor is anything trending into a dangerous range quickly. In short I believe he expects me to complete the series without significant problems. I hope that is how it all happens.

This is day 6 of chemo round 4 and all is well ... other than being bored after five really nice days of having two of my children (and my son-in-law) here to visit. I am feeling some slight discomfort as this is my typical first day without prednisone in each chemo round ... but it is not a problem ... not even enough to call for a Tylenol. I need to sign off now as I have nothing of interest to convey.

By the evening of day 6 my travelling/transient pains were evident as is typical. They are actually quite unpleasant ... but also surprisingly very responsive to Tylenol, after about 20 to 30 minutes. Now on day 7 I am enjoying morning coffee and hoping the pains do not return, ergo, let's repeat the last chemo round result. Other than that I only have one other item. As occurred recently in other chemo rounds, what starts out as constipation quickly reverts to diarrhea, without any stool softeners or laxatives taken. This pretty much means my body is yielding to a kind of standardized, not so bad, but personal response to the chemo drugs. Oh, per usual, the numbness in toes and fingers comes and goes, a bit more pronounced than in chemo round 3.

Hmm ... more aches and pains, more diarrhea, going from day 7 into day 8, but I'm not taking Tylenol or anything else, just to be perverse. In short, I am impatient to get past all of these minor maladies. Yesterday late afternoon our power went out during an ice storm and my automatic backup generator didn't start. It was too dangerous to go outside to even look at it with sheets of wet ice. Thus, I carried lots of firewood into the family room (breathing hard due to lowered hemoglobin!) and we got candles and LED lanterns operational. I also got the apartment propane fireplace working just in case we had to retreat to there to stay warm and sleep. I was totally exhausted. Fortunately the power came back on after two hours ... it was dark and then it was like nothing had happened. In past times our power has been out multiple times for days, even more than a week in one instance. That kind of problem is not what one wants to face during chemo.

Day 8 was not fun as I had to take Tylenol to eliminate pains and my throat, as usual, started to hurt for no apparent reason at this point in the chemo cycle, leading me to eat plain Greek style yogurt, which helped a lot. Later in the day I could eat anything I wanted. Still, my general side effects, including numbness in toes and fingers, are more pronounced this cycle than in earlier chemo cycles. I'm guessing these are cumulative effects, similar to the drop in hemoglobin. I'm hoping that they do not interfere with chemo dosages in chemo rounds five and six.

Day 10 is not a fun day. From last night until I got up this morning it was 12 hours, at the end of which I still felt tired. This, finally, is the cumulative fatigue talked about with r-chop. I did some online reading about experiences of others and my experience is not abnormal, though I maybe should have made it until round 5 to feel this fatigued. Most likely it is my age being the primary reason. Anyway, as I read, I am supposed to get light exercise to combat fatigue, so I'll start using the treadmill again, for maybe five minutes a day.

Speaking of side effects, now many foods taste flat to me ... as if they have too little salt or other seasoning. I also experience smells, some actually pleasant, for things that are not there. I want to be doing creative cooking but I can't trust myself to know good from bad.

P>Oh, yes, tomorrow I will have some visitors, including one nine year old kid, and I'm living in fear of what they will bring into this house that could make me ill ... colds, flu, whatever. I have made it this far without any mishaps, mostly by isolation, and I can't stand the thought of things getting screwed up now. I will be pleasant but physically distant tomorrow ... no hugs or close proximity conversations. I may or may not wear a mask and my glasses.

Day 11 is just fine. I awoke from a normal nights sleep and I feel okay. I don't know what was wrong yesterday but whatever it was I improved through the day, coincident with me eating a variety of foods, though that is probably just a coincidence. Were I to summarize my net experiences during chemo I would say one cannot tell from day to day what will be experienced.

Here we are at day 14 ... the nadir. About all I have to say is my fatigue level yesterday was enough to pretty much spoil the day for me as I wanted to do a variety of things but simply didn't have any energy. Another item that remains minor at this time that I want to mention is some abdominal pain that seemed to follow a difficult bowel movement two days ago. It isn't a concern at this point but I think I'll take some Colace just to keep things easy. I did have temporary very minor bleeding after the bowel movement ... all with a superficial source ... scratching pain during feces exit, minor spotting, then nothing later. So here I am, bored and impatient. I have a relatively poor appetite especially where meat or fowl or fish are concerned. I know not the reason for that, only that I have minor weight loss (1.5 lbs.) and I'll try to make up the protein loss via yogurt. Oh, yes, one more item ... I am not sleeping well. I get a few hours, wake up, then lay and rest for many hours without falling asleep. This has been consistent the past three or four nights. I am not uncomfortable or in pain, just not sleepy.

Mostly I am bored now on day 16 and wishing I could accelerate time to move things along. The abdominal pain is gone. The on again off again sleeping continues. With eating well I have a weight of 197.5, which is basically a loss of only three pounds since the beginning of chemotherapy. That is pretty good, especially given my variable appetite. One frustration is seeing all the tasks I have to do around the house but knowing I can't or shouldn't attempt to do a number of them until my energy returns after the end of chemo round 6.

I'm feeling good early on day 18, and if I remember correctly this has happened in earlier chemo rounds, but typically followed the final two days or so with physical issues like gout. So, we'll see what happens this time around.

Finally, day 21. No gout or other physical issues save insomnia and peripheral neuropathy. The latter is more pronounced with each chemo round and I have difficulty buttoning my shirts or manipulating small objects like turning a nut on to a bolt. At this point I don't know if my Vincristine dosage will be reduced to accommodate that issue. I'll find the answer tomorrow on Day 1 of chemo round 5.