2020 and Holdin' On Like Everyone Else!
This year. This year!
I haven't been quite sure how to write this post. The only visit other than with the oncologist in March, has been with my palliative physician and we met in person for the first time since March about two weeks ago. This is by way of saying that my medical testing and contact has been very limited for many months due to avoiding COVID and since that's the case, let me try and give you an update as best I can. I'll start with the physical facts, touch on mental health and finish with the impact of this year on me. All while maintaining a sunny disposition and rejecting any thoughts of doom 😉.
The Physical
Fatigue - My old friend is ever present on a day-to-day basis. It follows like an unwanted companion that one can't seem to shake off or escape; the guest that got invited by mistake and just will not go home. It matters not if I've gotten four hours or 10 hours shut eye, very sound or quite restless sleep, I still have to struggle to find the energy necessary to do even simple tasks at times. One could certainly say I am very tired of being fatigued (I'm tired of being indescribably tired?). But, it's my normal now, so I try to budget energy expenditure because the well runs dry all too easily. Palliative doc says normal part of the disease.
Pain - The neuropathy is a constant and, as mentioned previously, is most painful in my feet and hands. A mixture of numbness and stabbing/sharp pain, heightened sensitivity to hot/cold and sometimes, just a throbbing ache. Some days are not terribly bad. But most days the chronic pain is a constant reminder of the cost of doing business with oncologists and chemo-therapy. But I try daily to push through and get some type of walk in even though I know I'll pay a price in foot pain during and after. Pain killers take the edge off enough I can usually do the walk, run needed errands without bothering others as well as sleep and not just be in a fetal position groaning. A plan helps keep me on track with meds. A slight hernia at the bottom of the pelvic floor adds an additional, interesting pain sensation to all this. All that said, I do not have bone mets nor is the tumor pressing on anything, both of which can be wildly painful and for this, I. Am. Grateful.👏
PSA - The last reading was in March of this year and it was a 12.6. I will probably get another PSA drawn in the next month and I assume that the numbers will have likely increased. Again, part of the disease process.
Breathing - Ima preface this by saying the area I live in has been dealing with HEAVY amounts of wildfire pollution for almost a month now. I can't say that I'm having trouble breathing, but I can say that I am often hyper conscious of my breathing every day and sense that it's "different".
Uro/Genital - Urination is good as long as I remember to take the generic Flomax daily. Without it, I regret having not taken it every time I pee. Sexual function is reasonably good given age and treatment history (not that it matters during a pandemic :) ).
Chemo Brain - Forgetfulness it is all too common, as it has been since chemo. I find that it seems to occur more frequently. Perhaps that's just chemo brain coupled with getting older. I don't know. But I do know that it's embarrassing to be in the middle of the sentence and completely forget what you're talking about. I also miss my ability to wildly multitask. Now I have to focus on 1 thing at a time for the most part.
COVID - Negative, although I may have brain damage from having a 4 foot swab rubbed around on the insis back part of my skull. Next time I'd like to just give blood or have a colonoscopy or something less disturbing 😆
The Mental
Depression - I have been dealing with situational depression that seems to have become very chemical as this year has drug on. I mean, after all, there are so many situations in 2020 from which to choose, right? All of them in 7 months has been a bit much. Medicated with good old prozac, looking for good therapy that insurance will cover at least part of. If this year has taught me anything about myself, it's taught me that I need at least a certain level of human interaction on a regular basis. Even if it's as simple as making small talk with the clerk at a store, I need that. I also need to hug a person every so often.💔 The Great Pandemic has made that difficult.
But, I keep pushing forward. Having beloved relatives close by now is quite reassuring and they are huggers which is wonderful.
In summary, I can say that this is been my most challenging year since I was diagnosed in 2014. It's challenging in new and, at times, very difficult ways. When I started quarantining back in the early part of March, I felt like I had an advantage over so many in that I had, by necessity, become used to being alone for stretches of time. That seem to bear out for the first month or two and then I begin to realize that I was far more affected by the isolation than I expected I would be. This certainly isn't unique to me as report after report indicates that a fairly large chunk of our population is dealing with anxiety and depression brought on by the happenings of an insanely strange year, pandemics and what they bring as well as a the ever disgusting news out of Washington. Just a wee bit depressing.😕
But I try and remind myself that in 2014, I was told that even if I did everything the oncologists recommended, I would be lucky to be around in 5 years. I was told that if I didn't do everything they recommended, I was looking at roughly two years. So I did the initial treatments of hormone deprivation and chemo therapy that first year, after which time I decided I could no longer do the hormone deprivation and the chemo was a one shot deal. The only other western treatment that I've had was the radiation to decrease the size of the tumor for palliative reasons earlier this year. (i.e. let's try to avoid stomas and bags).
That's it. I read about so many men who are on two and three different types of androgen blockers and suffer all the side effects that come with them. I read about men who have had an orchiectomy (surgical castration) and I shudder at the very concept. March of next year will mark seven years since I was diagnosed and the only thing I've done other than the treatments mentioned, has been to continuously consume some form of high content THC/CBD cannabis. As noted above, I often don't feel too great. But I am here, still, for almost 7 years now.
As my docs say, "Whatever you're doing, keep doing it."
I am.
