The last year or so has been challenging, more so than you might think. It’s why I haven’t written much in the way of blogs, although that will change. I’ll tell you my story, and hopefully, by sharing the details, my experience will help you when, or if, you encounter your adversity.
Some background information, first. Since I stopped engaging in IT consulting assignments at the end of 2012 (with a brief exception), I’ve lived in California in the High Sierra region with my wife Cathy. This—mountains and snow—is a far cry from places like Bangkok, Singapore, Istanbul, Athens, Amsterdam, London—the list goes on—all exciting and exotic places where we’ve worked and lived.
In 2013 I replaced consulting with writing thrillers and science fiction; something I’d wanted to do for most of my life. I self-publish and I sent off book #11 to the editor on April 20th. Book #12 should be ready for edit before the end of June. Not bad for a person who turned 79 earlier this year.
Let me set the scene.
In December 2016, I went to the local urgent care medical center with a mild stomach issue. The doctor sent me off to the local lab for a blood test, and I returned a couple of days later to discuss whatever might be contained in the CBC (Complete Blood Count) report. With a somewhat direct approach, the doctor pointed at the number for my white blood cells and said: “You have leukemia. You‘d better see an oncologist.” Sometimes the bedside manners fall short of expectations.
I suppose a count of 2.7 is low when the standard range is 3.4 – 10.0.
I accepted the doctor’s advice and arranged an appointment with an oncologist. His initial assessment was along the lines of: “Hmm. You don’t have any obvious symptoms apart from your CBC [Complete Blood Count) results.”
Apparently there is typically a range of what I call overt symptoms, including items such as bleeding, facial sores, odd bruising, susceptibility to infections, skin changes, and so on. Remember, I’m not a doctor and anything I write here is from a totally uninformed perspective. That’s the important disclaimer.
So from January to July 2017, I experienced a range of diagnostic procedures, all the while undergoing monthly blood tests; the results of the latter did not change in any fundamental manner. The diagnostic tests included x-rays, an ultrasound examination, and a CT-scan, all of which provided nothing more than additional revenue for various medical organizations.
Bone Marrow Biopsies
Eventually, the oncologist decided to carry out a bone marrow biopsy. That, in itself, is an interesting experience. It’s as though they are drilling for oil in the back of your hip. You can’t see what’s happening—you’re face down—and while the nurse applies a local anesthetic, there is a feeling of discomfort and a touch of pain when they aspirate the bone marrow sample. The drilling was by hand—see later for a different experience.
The lab report took a week or two, and we faced the oncologist again. ‘We’ consists of me and Cathy, my wife. Cathy has been remarkably supportive throughout this entire period—more on that, later.
Remember, I said I am describing this all from a lay perspective. If you want to really explore leukemia, use Google to search on MDS (Myelodysplastic Syndrome – while it’s called syndrome, it is a form of leukemia) and AML (Acute Myeloid Leukemia). The best site for details and informative material that I’ve encountered is this – https://www.mds-foundation.org/patient-caregiver-resources/.
Basically, with either MDS or AML, the bone marrow is failing to produce good blood cells; this failure will, for example, weaken the body’s ability to fight infection, and, ultimately, will result in death. That terminal situation may be years away—it depends on the stage of the leukemia and the effectiveness of the treatments. The bad cell generation is referred to broadly as ‘blasts’; when blasts exceed twenty percent, the patient is likely to have AML.
Back to facing the facts of the lab report. It stated my blast level was over twenty percent, and the oncologist advised that if treatment didn’t commence within days or weeks, I would not survive more than three months.
Yes, you can imagine.
Fortunately, we were able to get a second opinion with the Oncology Department of a university hospital in San Francisco (UCSF). At first, the reaction was, yes, that appears to be a valid prognosis. Somewhat despondent, we headed home, back to the mountains, a two hundred mile drive. As we arrived—as we were walking up the stairs—the oncologist from UCSF phoned. He said he’d been reviewing the series of blood test results, comparing them against that first biopsy lab report, and wanted to arrange a second biopsy, because there was an inconsistency between the two sets of data.
Our sighs of relief must have been audible all around the High Sierra.
So back to San Francisco for the second biopsy. UCSF oncology department has a different approach—the nurses use a small electric drill to obtain the core samples. Work on this picture for a moment: you’re face down, you can only imagine what’s happening, you’ve had a pain-killing injection, and you hear the drill and feel the pressure as they drill for those marrow and bone core samples. The aspiration still makes your reflexes kick, though. I was offered dream medication before the biopsy process and declined. (No, I’ve no idea what it was, apart from something to wipe you out.)
Two weeks later we returned to San Francisco to review the lab report results with the UCSF oncologist. His opinion: I didn’t need to commence treatment. I had MDS, not AML—at least, not yet. To a certain extent the oncologist’s decision to not proceed with treatment at that point was a risk.
Monthly blood tests continued, and it seemed the results reflected stability in the metrics. I still did not have any overt symptoms, but all the while covert ops were being conducted by whatever body team causes leukemia. No, no one knows.
Eventually, we reached the third bone marrow biopsy. This was in March 2018; a good six or more months since the second one. Back to San Francisco. Same process, same electric drill, same kick when the aspiration process jars you. I was far more relaxed about the process, even though it was still uncomfortable. Declined the happy pills again. I might have to try them one of these days, simply for assessment, of course.
The results this time were not as sanguine. Treatment was now necessary.
Treatment for MDS
We decided to visit a nearby herbal dispensary—yes, those herbs are now authorized for sale at state levels while still regarded as illegal at federal levels. This country has strange cultural issues. I wanted something to cope with nausea and anxiety—both likely side effects of the proposed chemo. The process for purchase of cannabis—for medicinal purposes only—is somewhat reminiscent of a Marx Bros movie. You enter the premises, duly licensed by the state; register with the receptionist who takes details from your driver’s license—I kid you not—there’s the evidence for the federal authorities. Once identified, you walk through another door into the retail section. You’re called forward and state your requirement. A young lady, with some modest tattoos and a nose ring, details different potions from a sales list.
I wanted high cannabis content and relatively little or no THC (tetrahydrocannabinol) and purchased a small bottle—enough for thirty or so doses of one to two drops. Of course, there is a total lack of sophistication in the recommendation process.
Cash is the only payment medium—remember, this trade is not legal at the federal level, so checks and credit and debit cards are not accepted. We headed home clutching a small bottle of cannabis oil, and realized on the way, there was probably a law against transporting the bottle from one state to the other. Weird.
I set out to achieve a higher fitness level than normal before commencing the chemo treatment; while I might be heading towards 80 at an accelerating pace, I am reasonably fit. I used to ski (until arthritis established a hold), I still snowshoe, I like to paddle a sea kayak, and I enjoy hiking mountain trails. Also, I have a personal trainer who tortures me twice a week. He’s a TRX specialist, which I think is effective for physical conditioning. So I increased the hikes. My objective was and is to be able to readily cope with the physical impacts of chemo treatment.
The treatment schedule is five days of chemo every twenty-eight days. The prescription is Vidaza, which is a mild-impact chemo. There are three delivery options: a port (an implantable venous access port—these are permanent) into a vein, intravenous, and straightforward subcutaneous injection. I chose the last of these.
The first session was last week.
We had a momentary issue when my blood test result reflected a lower than expected neutrophil count—they’re the white cells that support your immune system. A referral by the nurse to the oncologist was followed by his decision to proceed.
The process is relatively simple although very disciplined. Two nurses check off the prescription and patient details, recording it all by computer. A nurse carefully inject the medication into—in my case—my midriff. The medication is intended to be injected over seven days, although it apparently is normal to reduce it to five days, which requires an increase in the volumes injected.
Five days and twenty injections later, my stomach area was tender, swollen, and had some light bruising and lots of discoloration. That was it. Oh, an anti-nausea medication was provided each day about twenty minutes before the injections commenced. The side effects of Vidaza include fatigue, nausea, possible constipation, etc.
I had a follow-up blood test four days later, and after a positive session with the oncologist, returned to the mountains where fatigue seems to be the main issue. An interesting aside—the oncologist stated that I had sent my avatar to have the chemo; that probably reveals a lot about how I’m handling this part of my life.
The chemo is going to kill my blood cells—thus the fatigue. It may also have an impact on the bone marrow. The bone marrow will generate new cells and the intention is that (some of) these new cells will be fully formed. The chemo treatment will not eliminate MDS. The objective is to get the blast percentage below ten percent. That will, if achieved, give me a number of years more to write books. I’m serious—I’m increasing my output rate and will continue writing for years.
Life expectancy metrics are very difficult to work with. The sample is likely to include patients with pre-existing conditions, may not have good general health or may not be physically fit, and so on. The objective based on discussions with the oncologist is to survive at least two years and up to five years or more, after completion of twelve months of chemo treatment.
Now I can hear someone asking a question about bone marrow transplants and other (far more aggressive) chemo treatments. The answer is simple. I mentioned my age (79); these other treatments are contraindicated for an older person. To put it bluntly, I would not survive. There may be new treatments in the future; they could provide an extension to life expectancy or even a cure.
My greatest support is my wife, Cathy. She is watching over me, inspiring me, and caring for me—for example, by making sure I’m comfortable, that my diet is well thought out and followed. In return, I am trying to not be a total drain on her emotions. It’s inevitable that most pressure falls on the survivor rather than the person suffering from cancer and I don’t want to worsen that impact.
Support of family and friends has been forthcoming and contributes substantially to well-being; I’m also receiving numerous emails of support from readers, and I thank all of you for this.
You can probably gather that I have a somewhat pragmatic approach to all of this. I’m an atheist, and my approach contains no religious overtones. I am what I am. My friends regard me as single-minded, stubborn, I suppose, and I’m determined to fight this for as long as I can. There is no cure; the chemo process can push back the onset of whatever the final stage will be, and I’m determined to push it back further.
I hope you gain something helpful from reading this story of our adventures since December 2016. It’s been a challenging period, with roller-coaster emotional issues resulting from changing diagnoses. I’ll add more to this story in six months or so, when I have the result of my next bone marrow biopsy.
Your adventure may be totally different. As long as you have support, and can still smile at yourself, you’ll make it; you’ll overcome your adversity.
It’s time for my training.
After that, some more writing.
Life goes on!