[This chapter is devoted to the many good souls that donate their pint of blood - not for money, glory, the chocolate chip cookies, or any “swag” they may get by donating blood, but because they believe it’s the right thing to do. Ironically, prior to the beginning of my cancer journey, I would have probably been considered a borderline “trypanophic,” with a propensity to avoid needle sticks whenever possible. As such, I never donated blood and by the time I knew the value of doing so and wanted to do it, I was ineligible due to the radiation I had already undergone, and the chemotherapy I would eventually undergo.
I feel safe in saying that I will never be eligible to donate blood again, so I feel about our members of the military as I do about those that donate blood – people that put on their big boy and big girl pants and make sacrifices for their fellow citizens, in many (most?) cases for the benefit of people they will never meet. Cincinnati, Ohio has a renowned institution named the Hoxworth Blood Center – an organization that works tirelessly to ensure an adequate blood supply for all Greater Cincinnatians. We should all consider supporting these types of organizations with our donations – both hematological and financial – as I am living proof that you never know when you might need the help of one of these amazing organizations.]
I generally have far too much pride to either (a) re-use a chapter title without an awfully good reason, or (b) default to a cliched and overused phrase like “Houston, we have a problem” (ugh, I just did it, it’s irresistible!). Anyway, you might already be able to figure out where this is going.
So now we are at clinical trial launch day, which feels appropriate given that I am here in my new home-away-from-home, Houston, Texas – a city with an innumerable number of nicknames, not the least of which is “Space City,” as it is home to NASA’s Lyndon B. Johnson Space Center – one of the most fascinating places that you will ever step foot into.
One of my nurses woke me up at about 7:00 a.m. saying that there had been a few “problems” turn up in my overnight blood work that were “of concern” that had to be addressed by the co-Principal Investigators of the clinical trial and the clinical trial sponsors, as there are more parameters to be met or exceeded for entry into this trial than Houston has nicknames.
The biggest problem was a sudden and unexpected drop in my hemoglobin, which had dropped from 9.3 (already at anemia levels) to 8.1 in one day’s time. The normal hemoglobin level for a 61-old male varies somewhat depending on the source, but most credible sources would put it somewhere between at 13 to 17. However, entry into a clinical trial requires a new manner of thinking. For the most part, it really doesn’t matter what is considered normal for the purposes of a routine blood test. The main thing that now matters is the parameter set for entry into - and continued participation in the trial - that the trial sponsor has set. The sponsor of my clinical trial has set that number at 8.5, and I could only proffer a pitiful 8.1.
After checking with the sponsor, the nurse told me that they needed to collect more blood and re-test to see if perhaps the hemoglobin result from the overnight draw was somehow incorrect, especially considering the significant one-day drop. That second draw would be tested and if it came back above 8.5, we still had time to go with “pre-meds” at 9:30 am and the clinical trial drug injection at 10:00 a.m.
About an hour later, my nurse returned and said “well, that was better, but not good enough.” I asked her for the second result, and she said it was 8.3. Nonetheless, she said the MD Anderson trial team was going to check with the sponsor to see if that was “close enough.” Unfortunately (or perhaps, fortunately in this case), there was no “give” in the number and a blood transfusion would be required. The hope was that my hemoglobin would get up to acceptable trial levels in a few short hours so that we could make the new 1:00 p.m. deadline for starting the trial.
My own blood now had to be “typed.” Having your blood typed in advance of a blood transfusion is necessary since not everyone can even hazard a guess at their own blood type (it happens) or may even be under the wrong impression as to their own blood type. An hour or so later, my blood type was confirmed as O+ and the MD Anderson lab began their work to prepare the bag o’ blood that I would soon be receiving, from a donor I will never meet.
Within an hour, the blood to be transfused had arrived at my room. Never having had a blood transfusion before, the decision was made to be very conservative in transfusing it, going slowly so the nursing staff could monitor for any adverse reactions. As a result, the transfusion itself took much longer to administer than I initially expected, and the sands were quickly slipping through the hourglass. By 1:30 p.m., the trial had been called off for the day. We will try again tomorrow.
I know I have mentioned this before, but one of the skills that cancer patients must develop, or hone, is anxiety management. There are so many test results, some that carry high stakes and for which results are not delivered instantly. Another skill you must develop and maintain is being patient. I think back to the advice my mother – Barbara Carol Abbott – who has been largely undercelebrated to this point in the blog, gave me long ago.
She told me not long after my diagnosis that “you have to live based on how you feel – not based on how you might feel someday.” It has taught me much, and I have pulled strength from it more times than I can count over these last (almost) 11 years of navigating a cancer journey. In this case, I quickly remembered that today I feel pretty good, and I still believe that there is reason for hope. It reminded me to focus on the positive of what the clinical trial might ultimately deliver rather than worrying about whether these new developments were going to keep me out of the trial.
To be clear, challenges still remain, some of which could prove to be significant. I recently had a close call with kidney dialysis that is the result of past cancer treatments. I have had anemia for some time now, and the problem is getting worse. Is there internal bleeding that is being caused by something else, perhaps a whole new problem altogether? We will have to get to the bottom of that soon. My cancer-related back pain is still out there – it disrupts my life in all new ways, each and every day. For the first time, my liver enzymes were all out of whack – and I mean WAY out of whack – this morning. Why? Is there something new going on that could even be a complication of past treatment or is it something current and acute? Will the same set of numbers be there tomorrow morning?
There is a good deal to worry about if I choose to go that route, but I know that the most important thing right now is cancer control. The hope is that this new form of systemic treatment – immunotherapy – may begin to assert some lasting control over my cancer. Some members of the MD Anderson staff have been in my room telling me that once we start the trial, that I need to “visualize” my body’s own killer T cells switching back on, latching on to the cancer cells, and killing them. It has been a surprising view coming from trained medical professionals, but my guess is that, by now, they have been able to correlate some outcomes with the mental approach and coping mechanisms that some patients have carried into the trials. What possible harm can come from visualizing a positive outcome? Is the idea of a killer immune cell latching on to a rogue cancer cell that far-fetched. If you think about it, that approach worked almost every time for Pac Man, that beloved video game icon of the 1980’s.
So, tomorrow is another day. Priority #1 is getting the trial started and then doing everything that I can do from this hospital bed to maintain eligibility for the trial and optimize my own results. I will do my part, and I will trust an immunotherapy clinical trial and one of the world’s most respected cancer treatment centers to do their part. I am lucky to be here, but I just want to kick this thing, get home, and see my family, friends, co-workers, and dogs, and enjoy every day I have with them.
Until next time,
Steve
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