My Turn V


John Wright

This article begins my lymphoma experience trail starting with chemo session three. All bloodwork done on 12/27/2107 is normal except my creatinine level is elevated at 1.79. My oncologist is pleased with all other results and with my return to higher energy levels, my self determined improved cognitive function and mood improvement/increase in interest factors for cooking, etc. and overall feeling better ... like before the lymphoma manifested earlier in 2017, showing up as fatigue, edema and then appearance of a dead lymphoma tumor bulging out in my right underarm.

The bottom line: My oncologist is happy about all blood work except for my elevated creatinine level (1.79 where normal is 1.30 and 5.0 would indicate very serious kidney disease). In short, my creatinine has been somewhat elevated for a few years, fluctuating between 1.52 and 1.20. For now I am told to push water. I will also limit my intake of meats, but that is my choice rather than his recommendation. Similarly, I am strongly considering eliminating all alcohol and making a gradual shift to a partial Vegan diet.

Chemo itself can cause the creatinine elevation, and unfortunately so could cancer in one or both kidneys. Some of this interest harks back to a 2015 PET scan that identified two external cysts on one kidney and one internal cyst in the other kidney, none of which were classified as malignant. Dr. Sims won't engage in conjecture, nor will I at this point.

For now, the scan planned for early to mid January 2018 to check progress with the lymphoma may be CT or PET. Dr. Sims wants to review the previous PET and CT scans, dial in my signs of progress and the creatinine issue, and then decide which scan is appropriate and also the limits of the areas to be scanned. My preference is to go all out to locate any potential problem with other cancers or non-cancer problems and adjust strategies as necessary.

As I write now I am early on day 2 of chemo round three. The prednisone and other steroids are having their typical beneficial effect. I feel no pains or other discomfort and my appetite last evening at dinner was fine.

Later today I will again have a Nulasta injection as that worked so well in returning my neutrophil levels to normal. What I wrote in earlier articles about lymphocytes was true with regard to numbers but not of any particular concern to the oncologist. The neutrophil levels are of prime interest, and at my nadir blood work done on day 15 of round one of chemo my reading was 0.47, where any reading below 1.0 indicates an ever higher risk for bacterial infection. Normal values would be at or in excess of 1.5, I believe, if my memory is correct.

Given the experience I had a few days earlier with a possible UTI I was reminded of the importance of having a prophylactic prescription of a suitable wide spectrum antibiotic available to me at any time should bacterial infections present, unexpected, and at a time of inconvenience where I cannot have normal examinations and actions by my oncologist's office. To point, their general recommendation to go to the ER with elevated temperatures and possibly other symptoms likely related to bacterial infection does not at all settle well with me. Dr. Sims did not say no to my request for a cephalosporin, but he also did not commit to providing a prescription for same. I think most of all he wants to consider my viability in me deciding whether or not to initiate antibiotic use, and I hope he heard about the benefits I had using Cipro, starting in 1998 and multiple times thereafter to control/eliminate bouts of diverticulitis.

I am not happy with the protocols at Elliot Hospital ER, nor at CMC (Catholic Medical Center). Both facilities have screwed up diagnoses regarding me and my deceased wife, Marie, and I give them no points at all for doing essential diagnostic work. Ditto the Urgent Care centers. You get nothing useful done unless your easily detectable ailment is deemed to be immediately life threatening. That sucks. I am too damned bright and too experienced in researching and doing self-diagnosis to tolerate that bullshit. If I show up, something serious is afoot, and I require full diagnosis. In short, they pissed away multiple opportunities earlier this year to do scans that would have given a early start to identifying the existence of and then treating my lymphoma.

Thus, my direct access to my oncologist's office/staff is now of prime interest to me, and given that this is the middle of a snowy winter, and that I am about 20 miles away, and that my sweetheart Peggy cannot drive after dark, and that I may or may not be ready and able to drive, I think I need to insist on a protocol suitable to my sense of my needs. Believe me, I am not pill crazy. What I am is learned enough to know how to optimize my success in limiting the development of real problems into dangerous conditions, and also my comfort in difficult and possibly dangerous conditions.

Here is a case in point. During this last chemo cycle I developed what appeared to be a UTI with burning while urinating. That is a danger signal and something that must be addressed immediately via a call to the oncologist's office. As my problem happened on Christmas eve, and continued into Christmas day, I contacted the on call PA and we decided I could use my existing supply of Cipro to stave off any infection, for I was due to start chemo round three in two days anyway. And we were snowed in so we couldn't simply drive to a pharmacy. Note, especially, that my having a prophylactic prescription for Cipro allowed me, with the concurrence of the PA, to act on my problem directly. This is exactly the type of control I choose to exert to contain problems. I am not a wingnut who dives in without both researching a problem and getting the input of medical professionals before taking action.

You may recall that in My Turn IV I noted that I also experienced a burning sensation in the corners of my eyes, accompanied by tearing, but without discharge of any pus. So I put two and two together and recognized I was dealing with a virus, not a bacterial infection, in both my urinary tract and my eyes. Thus I killed taking the Cipro after only two doses. And I had to be right as my UTI symptoms went away, and gradually so has the tearing/burning sensation in the corners of my eyes. So my automatic analytical method exceeds what I described earlier by me remaining curious about alternate diagnoses given symptoms that may invalidate earlier assumptions.

Okay, enough venting of concerns on my part. We'll see what happens next relative to me getting my requested prophylactic prescription of a cephalosporin antibiotic.

This is day 3 of chemo round 3. Yesterday I felt like the chemo drugs were kicking me in the butt. The typical effect of prednisone was only partially evident. I had numbness in the toe pads of both feet, worse on the right (as expected due to chronic gout) and tingling in the tips of my fingers. That side effect can happen from, I believe, Vincristine ... or Retuximab. I also experienced increased tinnitus in both ears and a feeling not of being faint but definitely off cranially and fatigued. Beyond that, I was peeing about every fifteen minutes, which had me uncertain regarding a problem state, for I was pushing water to clear my kidneys, which would obviously cause increased peeing, but so would a side effect of a chemo drug that indicated a call to the oncologist's office was necessary. I called the oncologist's office as the side effects directives indicated I should do so given the side effects. I retreated to bed, slept for two hours, got up and started to feel a lot better. The office returned the call and we decided to simply monitor my condition. I noted that even with prednisone the early state of chemo round three could be expected to kick me in the butt with so much poison inside me being so active.

Day 3 proceeded well beyond that point and I actually felt pretty good, though with limited appetite. Eating fresh fruit and a pastry helped a lot. I had little appetite at dinner. The numbness and tingling receded, the tinnitus lessened somewhat, and I felt alert and with reasonable energy, all the way to 10 P.M. that evening. I noted when we went to bed that I was talkative and not sleepy. Actually my sleep was only light and intermittent all night going into Day 4 ... now at 6:30 A.M. Well, I feel fine for the moment as I have my only cup of coffee with any caffeine content for the day, and that only a 50:50 mixture of regular and decaf. We will see where it goes from here.

This is day 5 of chemo round 3. My side effects are more pronounced than in chemo round 2, like mouth dryness and side of fingernails skin dry splitting, mildly painful. I'm drinking and expelling plenty of water. I'm starting to get the end of prednisone dosing pains, lightly, even though this is my last day to take prednisone for this chemo cycle. The most pronounced side effect is getting out of breath when I do much physical stuff, like carrying Christmas things up the 17 steps to the second floor. I find I feel okay if I simply lay down for about three or four minutes. But I am annoyed that this is happening at all. I also noticed last evening that my nose is producing small amounts of partially clotted blood but not actually bleeding, so I am being quite conservative when clearing my sinuses.

As I examine my thoughts I realize I am becoming anxious with the combination of chemo effects and especially the upcoming blood work and CT scan ... the moment of truth regarding progress in beating the lymphoma. On one hand I have no reason to think I am failing. On the other hand I repeat what I said early on with the My Turn articles ... I can't identify any actual cancer survivors in a long list of friends and loved ones who've died in the past 25 years. They all died with either no remission or with remission from radiation that caused fatal cancer mutations within a year. That is not a reasonable base from which to draw confidence! Yet none of them died of a lymphoma either.

I need to cool my jets and be more patient, for I can't hurry this process and there is no point in making myself or anyone else feel badly. But I know I will experience some level of physical pains during the next few days that I don't like, but which usually respond to acetaminophen ... at least at first. Then there will be an early blood work series merely one week after infusion. I did not learn the exact reason for that. All I know is it precedes the CT scan by one week ... thus the scan will be done at the nadir of my white blood cell count period. And then? Well, the schedule calls for all the chemo round 4 blood tests, oncologist examination (and no doubt scan review) and then, depending on progress, the infusion.

Oh, for the record, any hint of active libido has been long gone for a while ... weeks. That is merely one more of the joys of cancer and cancer treatments ... not!

I wonder just how long it will take before we finally develop useful genetic engineering results to beat the hell out of all cancers? And I mean that from the dual perspectives of pre-birth, even pre-fertilization gene changes, plus cancer event cancer cell destructions combined with immune system corrections.

This is day 6 of chemo round 3 and we've rung in the new year, 2018. Hey, given that my birthday is the 28th of January I am pretty much guaranteed to hit the almost ripe old age of 74. That is okay. As for how many more years I have, if any, who knows? More to the point, if I have some and they are quality years then great. Otherwise, who cares? If nothing else I've finally experienced having to focus all my effort to stay alive and avoid more things that might kill me, like sick crowds with my presently low immune system condition. Realistically I am glad to have my sweetheart and we want to be there for each other. Both of us have known the deep emptiness of losing our spouses ... so there is now a well understood loyalty and responsibility to make the best for each other as long as possible, and that could easily be another ten years if we avoid cancer fatalities. Or not.

My physical experiences following this chemo round are not the same as the last two times. I am more fragile. I am pissed off that this time around I had mostly injections in place of infusions with too little time between the injections, and I wonder if the boluses of chemicals have done serious damage upon entry? I am thinking specifically of the one that can do heart damage ... but also I note that my lowered hemoglobin count is causing me to rest more after doing anything very physical. To cut to the chase, I am not at all happy with any reductions in functionality of my body, including elevated creatinine and lowered hemoglobin. I will pursue this with my oncologist regarding chemo dosages and even, if needed, delays and later resumption of chemo. And speaking of dosages, the numbness in my toes/toe pads of both feet is quite noticeable at times and comes and goes, so I will expect a reduction in dose of the chemo drug that causes that temporary problem that could become permanent.

All that said, I am not expecting to feel well starting later today as day 6 is my first no prednisone day of this chemo round. We'll see. Enough for now. Per usual, all really depends on whether or not I am winning this battle.

This is day 7 of chemo round 3. My traveling/transient pains that typically follow the end of a given prednisone period were normal starting yesterday afternoon. Tylenol, as usual, worked to relieve those pains. I actually felt more alert and, though small, more robust for doing things. My appetite was good. Of course, now I have to watch out for constipation ... per usual. Well, forget that. Said problem resolved.

I slept a lot more than usual yesterday but I'm up at 5 A.M. this morning and feeling pretty normal. My pains are very minor and do not require Tylenol. My biggest complaint is partially blocked nasal passages that make nose breathing difficult, and a clear inability to eliminate that problem without initiating a potentially serious nosebleed. I am thus very careful not to irritate my nasal passages. Interestingly, when I make morning coffee I typically get an alergic reaction to the smell and then sneeze and have rhinitis. So did it happen this morning, allowing me to gently clear my sinuses and breathe better nasally. Of course, there was obvious bloody clotting that came out with the mucus, but no bleeding.

So much for now. I'll have to track events of today later. I will note that my level of concern about the chemo efficacy continues to mount just out of fear. I also note that my sweetheart has managed to develop a cold from feeding her turkeys and deer in subzero weather with too little clothing to keep herself warm. So she is sleeping on the sofa to keep from hurting me.

I've a few things to report on day 10 of chemo round 3. I had blood work done on day 8 and tried to influence my creatinine reading a few days before the testing with salt reduction, pushing water at 2.5 liters per day, and, especially, intentionally not taking my BP meds, one with HCT as a diuretic, until after the blood work. Well I'll be darned ... my creatinine level went from 1.79 (high) down to 1.30 (high end of Normal). Thus, all concern evaporates, and I wonder why no one picked up on the fact that my BP meds could dehydrate me right before blood work? It is rather obvious that serum creatinine (and some other measured items) would show elevated values in a state of partial dehydration.

I continue to have minor pains and much the same symptoms now as in earlier chemo rounds. I take no more than 1 gm of Tylenol in a 24 hour period, by intent. My appetite is good. My physical stamina slightly improving, and I hope that means my hemoglobin count is okay ... that wasn't part of the above mentioned bloodwork, so I won't know about it until day 1 of chemo round 4. As for now, I'm simply hoping that I don't get bone pain from the Nulasta of chemo round 3. That wasn't fun the last time around, even if it did only last for one day.

No detectable bone pain by day 11. But for the last two nights I have experienced some insomnia similar to earlier chemo rounds. I am also clearing my sinuses gently as the tendency to produce small clots and minor bleeding is present.

Oh, yes, I almost missed something important. Prior to all the lymphoma stuff, I've had for many years some esophageal irritation happens that makes itself known at unpredictable times. I always simply flood myself with water and the pain goes away and stays away ... until the next time ... which could be one to six months later. In short, any body system weakness becomes a cause for some concern while on r-chop as mucous membranes can become sore and sensitive. So, up to this point I have eaten whatever I've wanted, culminating yesterday in a large tortilla shell filled with taco ingredients, including pepper jack cheese and a small amount of sriracha sauce. Well, it tasted fine going down but before long I started having esophageal pains that didn't want to go away. Per usual I flooded with water and also took an antacid and eventually the pain subsided. I found to my chagrin later that I could not eat much of anything without causing discomfort, so this time I have set myself up for a fall. This morning even a bowl of oatmeal caused discomfort. I'm not sure what to do at this point other than revert to a very soft diet per the general advice in the literature provided to me. This is a disappointment. Also a wake-up call. I hope I have not precipitated a situation that will cause serious bleeding.

Lest I forget one other, uh, chemo companion ... for the second day in a row I have diarrhea. Lucky me. At least it isn't constipation. Oddly, after all these early in the day issues I'm feeling pretty darn good. I'm showered and alert and so hungry I just ate a toasted buttered English Muffin. So much for the bland diet! So far so good. I also note I have not worn the support stocking for the past few days and, though I do elevate my legs and feet often, no edema is present. My right foot is slightly swollen but my ankle and above are just fine.

Here I am on day 12 feeling fine. Actually, I felt fine starting yesterday in the afternoon. As usual, this seems to be a nice respite in the middle of a chemo round. Perhaps the concentrations of the chemo drugs have at this point diminished enough that my body can equilibrate and return somewhat to normal. Whatever the case, I feel better now by far than I did earlier last year prior to the lymphoma diagnosis. I am, however, continuing with the now expected partial insomnia.

It is the morning of day 14 and I have only a few things to report. First, I feel rather normal ... not the typical way one would feel while on chemo. My level of fatigue is decreasing, not increasing. Second, I now have what feels like irritated skin on the left upper half of my back. There is no redness and the pain happens only when the area is touched or rubbed. A brief foray into possible reasons turned up some 36 possibilities for that condition, only three of which have any likely meaning for me ... shingles, cancer and chemo side effects. Your guess is as good as mine. I hope it goes away soon. I will mention this to the oncologist in a bit over a week when I go in for the CT scan review and chemo round 4. So, tomorrow is CT scan day and I intend to get the CD copy and review the images at home, and then the next day take the CD to the oncologist's office for his later review. I don't really know what to expect from the images. I have to wait and see.

Today is day 15, the CT scan day. It is early morning and I'm anxious to get this underway and do my own review of the images at home ... and then take the CD to my oncologist tomorrow as I did with the earlier PET scan CD. I can't know that I will be able to derive my status with any accuracy as I am not trained as a radiologist. Still, prior to chemo, I was easily able to see the few areas of my body affected by lymphoma. We'll see.

Going back to day 14, I was very active physically, for I felt fine. But, come the evening I was exhausted and I had a lot of muscular pain in my back, probably from handling 50 pound sacks of cracked corn and other items. And, of course, I've returned to doing the cooking for our dinners and doing creative cooking, in this instance cloning Poppycock. I am having fun but paying a price. My point is I can't behave as if I am in shape until the chemo is done and I actually get back into decent shape. Fortunately by the morning of day 15 the back pain is gone.

The scan I had today was different from what I saw before with the PET scan, and I've not a clue after looking at the images whether I am okay or in deep do do. The PET scan involved radioactive sugar, etc. The images were few and easy to interpret. Today was swallow a lot of barium and then get some contrast agent during the scan. It turns out that I had a scan like the one today back on the 2nd of November ... before any chemo. Naturally, as you might expect, I do not have a DVD for the scan on that date, hence nothing comparable for me to use with today's stuff. Anyway, this all awaits the radiologist's report and that will be added to the DVD that goes directly from the imaging place to my oncologist. In short, I am not likely to learn anything until next Wednesday ... my scheduled appointment to review today's CT scan and have chemo round 4. This does not please me but I have to be patient.

Day 16 is here and I have my old friend from the last cycle, at the same relative time, back to keep me company ... very painful gout in my large left toe joint! So once again I am taking indomethacin. I suppose I could say that keeps me from dwelling on the uncertain results from yesterday but that would be a lie. I am not in a good place psychologically, nor should I be. Rational, yeah ... happy, no. Well, enough negative stuff. I'll nurse myself along (as my partner isn't very effective) and try to do useful things, like complete a new recipe for Food Nirvana for Fried Chicken Sous Vide, and then make my official batch of Poppycock Clone so I can put that final recipe into Food Nirvana also.

Day 17 was not fun. After taking an indomethacin the evening before I fell asleep and stayed asleep for six hours and so I did not drink enough water overnight. Thus, poor urine flow and strong urine, and difficult to get back on track even with hydrating. So I worried about my kidneys, called the oncologist's office, and to cut to the chase that was a waste of time. I received nothing useful and I'm sure my oncologist did not get a note about my problem. In short, there are too many layers of staff to have much chance of actually contacting the doctor. Anyway, the kidney issue resolved with much hydrating and overnight into day 18 I drank 1.5 liters of water and peed light and clear and of large volume. But here I am, having not taken an indomethacin last evening, and my gout problem is coming back, just like in chemo round two. Four more days to go until the CT scan review and chemo round 4, and I will get to see my oncologist and relay my various experiences with chemo round 3 side effects, whatever good that might do. As you can plainly see I am frustrated as well as scared.

This is day 20. This morning I threw in the towel and took an indomethacin and now I feel much improved if somewhat spacey. I am drinking plenty of water. My plan is to take one more pill tonight and see how I feel on day 21. I intend to push water and cut out salt and not take my BP meds the morning of day 1 of chemo round 4, just to once again check out my creatinine level. Since the CT scan review on day one of chemo round 4 is so important I am ending this My Turn V article here. I sure hope I have something very good to say in My Turn VI.