Day 1 continued
The infusion center is large and open flow, you can hear the hum and sounds of the entire department, certainly a comfort as it tends to diminish the fear one might anticipate occurring during this process. It’s a communal experience for both patients as well as the nurses and staff alike, much better than being in your own room. I currently have a steady drip of Obinutuzumab, a drug commonly used for Chronic Lymphocytic Leukemia and later I would learn, for other cancers. Only god, or google perhaps, knows who came up with such a preposterous name for the drug. Like most advanced drugs, the name sounds like an attempt to neutralize the field from reality, providing no easy way to remember or create much attachment. This is a good thing. The second element of my treatment is an oral drug that goes by the name of Ventoclex, or at least that’s what I have been calling it, try as I might I just haven’t been able to properly recall its name, even though on the surface it seems much more simple than Obinutuzumab. I’m sure I will revisit this other drug as the date to start self administering it nears in three weeks.
I chose this path forward a mere two or three weeks ago, following a two night stay in the hospital, one brought on by developing Neutropenic Fever, the result of a urinary tract infection that caught me off guard to start the year. I hadn’t had a fever since my bout with Covid19 back in early 2021, a crisis that I was certain would end my life but only removed two full weeks from it, along with 12 pounds from my body and an additional few months rehabbing various side effects like severe arm strain. It was the scariest and most horrible, surreal experience I’ve ever encountered, one that ultimately, most obviously, accelerated my CLL status to that of dire threat vs. major nuisance. I don’t count the fevers brought on by readily taking the Covid19 vaccination when it was first developed, nor the boosters that materialized later as the virus transformed, as it was a known side effect common to most. The recent indecent with the UTI seemed benign in comparison, I was working when the fever first came on, and I subdued it easily through tylenol once it peaked at 100.4. This is the threshold, apparently, in which I must check myself into the ER for an extended stay with Denver Health, my Neutrophils Absolute bottoming out, leaving me unable to fight off infections of any sort. This is all new to me, but it made sense that if this could be a part of my daily existence, it was not one worth hanging around for. A week later, during my regularly scheduled visit with my oncologist, a woman whom I have grown to trust and admire, feeling confident in her abilities and approach to my condition, I received the simple thought that there is no reason to hold off on a full treatment process, and that the primary option for those with my condition seems well accepted. This was enough for me, I personally had been waiting for the one year mark to occur with my new employment, one so far outside of the arts to be jarring, but also one that seems the perfect fit to rebuild my confidence, strength and fortitude in facing life. I’ve had so many challenges previously, so, so very many, but nothing quite like this.
I also was uncertain over the last year as to why my growing stack of medical statements were never accompanied by a “bill for services” rendered. The statements are simple enough, but also nothing I’m intimately familiar with, my cancer train having left the station only as a result of receiving Medicaid back in 2021, following my bout with Covid19. Why did I qualify for Medicaid? Because my position in the arts left me with little to no income, further reduced in the year 2020 like a dixie cup of water down to its final drops. This was a good thing, I was able to seek medical care for everything and anything that ails me, which ended up being quite a lot! All I had to do was schedule appointments, show up, no strings or fees attached. I made good use of this since then, and requalified for the program in early 2023 before committing to the new health insurance I selected and that is provided by my employer. Perhaps more on that later. At the start of 2024, with the fever, the UTI, and even being attacked by a dog, not to mention bashing my right leg twice against sharp cornered outcroppings, which drew blood, bad blood, never ceasing blood, I realized it was time to try and move past these things that normal people have little trouble managing. I had developed enough strength and diminished anxiety by this point to make this decision and not fear what was in store for me over the next six months. The previous year, 2022, proved to be the worst of my life, with struggles I absolutely couldn’t manage, all leading to the demise of a 2+ year relationship with an absolutely wonderful human that I felt was everything I had wanted in life. Rock bottom is the only way to describe the conclusion of that year, both diminished fully by an additional diagnosis of Central Sleep Apnea. But this condition also allowed me to make some sense out of the experience I was having over the last decade, one of continuous fatigue, bad manners resulting, and the constant desire to detach from people for any extended periods of time. Incessant fatigue will do that to you, it rules your life. This last component was at least tangible, an answer that wrapped up the plot and paved the path forward for me to disengage with almost all of my previous life and focus on finding my way back, not to health, but to a mental space not anywhere near as dire as it had steadily become. That is where I am today, more understanding of my conditions, why and how they’ve affected my life, and at least some sense of a roadmap ahead to aim, work towards and hope for.
Sometimes less is more, and in the case of my decision to undergo a full cancer treatment, I chose not to dwell on the nature of the procedure as some people might, letting my intuition, as it had done so many times previous, to guide my thinking, no matter how impulsive that might be. Besides, my oncologist stated that I was utterly healthy other than my blood, which provided the bonus of making me feel that it would be better to tackle this while having some strength, rather than to commence after waiting for all of that strength to sap itself away. Oddly enough, when I was given the diagnosis initially, I had never felt better in my life, outside of the fatigue that nagged my daily existence but that back then I found ways to manage, somewhat. Covid 19 was the catalyst for the jarring, steady downward spiral that left me a shell of the me I had known, the same me I questioned constantly and can’t always say that I loved.
A dear friend of mine, one who was a “spiritual” guide of sorts over the last few years, had urgently recommended I get a second opinion on the treatment course set before me by my oncologist. I knew I wouldn’t fully take his advice, he himself had only recently been diagnosed with an even more severe and dangerous cancer than my own, and had committed to his own extended treatment to commence the year. This was hard to believe, but it's how life works, or perhaps how life doesn’t work so well. My choice was to accept that it's all part of the course set before me, and that if nothing else, if I survived, it might make me a better person. My second opinion only came a week ago during my appointment with the Denver Health pharmacist whose task it was to explain the course and drugs I would be taking, already committed to and that would commence in one week's time. When she asked if I had additional questions towards the end, I rather bluntly asked whether she thought I should get a second opinion, relating the conversation I had with my friend as well as my inherent hesitancy in feeling that it was necessary. She managed to put my fears to rest over this process or my having committed to it, perhaps it was her job to but everything she conveyed to me made good and perfect sense.
So here I am, with an IV feeding me the first dose of a possible cure, or rather treatment that could put my cancer into remission, knowing full well that it could always return. I arrived with my computer, my headphones, and all the determination in the world that this would be no big deal, I could write, think, start a new audiobook, all things I would normally be doing outside of the infusion center. This was nearly not the case as the first thing they administer is a hefty dose of Benadryl, not your King Soopers over the counter version but a medical dose that works fast, very fast. Before long I felt unable to speak too fluently, or grasp any formidable concepts in my head. The drug was doing its thing, along with two tylenols. In 30 minutes time they hooked up the Obinutuzumab drip, which started to do its thing rather quickly as well. I decided to shift from writing to starting my audiobook, Romney: A Reckoning, a title I selected from the public library because I have all too much time these days for audiobooks, and that I thought could be engaging considering my deep background living amongst the mormons. I was always against Romney’s bid for the presidency, but have greatly cherished my “Romney 44th US President” coffee mug his campaign had prematurely released the year he was trounced by Obama. As one, if not the only member of the Republicans to go against his party and not accept the lies spewing forth from the demon madman of our age, I figured it was worth a listen. I made it through the first couple of chapters before a deep unsettling feeling washed all over me that made me cease all activity, and just lie back for a spell. It’s not easy to describe this feeling, but I assumed it was normal and in keeping with the territory. It was only a few minutes after this state had initiated that I was visited by a Chaplain, an elderly woman named Maureen, who goes by Mo just as my son Udo’s previous tennis coach did. While I don’t have any religious affiliation or discipline, this visit was welcome in that just having someone to speak with, a neutral party, was beneficial. It took me out of the eerie state I was in and shortly after it concluded I felt I could prop myself back up and return to writing. The majority of this is the result. Day one seems to be going well, with no threats emerging so far, and the understanding that outside of the brief period of time in the early stages of each infusion, I may be able to manage with not a smile on my face, but the same good humor I have carried throughout my life and have also brought into each doctor or hospital situation I’ve had to endure in recent years. As I write this, I feel more unsteady, but hopefully that’s just the mind at work, doing what it does. I also just finished making my way to the bathroom and eating my lunch, also new features in this process that could lead to unexpected results, so I think I will cap things for now. Mild nausea has set in and might render me unable to complete today’s thoughts. But one last mention is in order, I took the photo of my hand this month, it's symbolic in the decision I’ve made to seek treatment. Anything that cuts my skin or can cause bleeding puts me at risk, no matter how simple or complex, though more serious injuries can result in death or at least an extended hospital stay, as my platelet count is low enough to be ineffectual to stop blood flow. I don’t worry about minor cuts, like last evenings when I arrived home from work on my bike, with limited time to enjoy my last evening before treatment commences with my son. As I was putting my bike helmet up atop a cabinet, one made of sheet steel with sharp edges, I nicked my hand in my haste. THe bleeding started and was reasonably easy to squelch, but this was a good sign at how cautious I must be at home, at work and in life in general with this condition. A serious car accident or other form of traumatic injury would easily be the end of me with the condition in its current state.
The photo on this page is me this morning before leaving for the infusion center. I don’t know whether I’ll take a photo per day, probably not, but it seemed appropriate to show my body condition at the start of this process and revisit it over time.
*Final note: this journal is intended to be both spontaneous and fluid. Revisions may occur from time to time, or the whole thing could drop at any moment. Hard to tell right now but the goal is to keep it going. I was inspired by Nick Cave’s recently published “Faith, Hope and Carnage” book of interviews with Sean O’Hagan, which I listened to this week and finished yesterday. Cave is an inspiring figure in the history of contemporary society and a hero in my life, one who has led an illustrious career and also dealt with the most unfathomable hardships a human being can endure, both he and his wife. But his spirit is one that I, and probalby many others in a situation like mine or just in general, can revere, understand and seek solace within. It has motivated me to stop my fear of sharing my life and details about that are the essence of my life. It’s a journey I began several months ago and have tried my best to incorporate as a daily practice. Some of that might materialize here, or perhaps not, we’ll see but I hope that anyone reading might find value in the openness, honesty and even writing style. I’ve always enjoyed writing, people have told me I’m good at it, even my mother recently has. This has allowed me to reduce my fear and stop questioning whether any of it is readable or literary quality. Who fucking cares, that’s not the point at the moment and I hope to keep at it.