Oh no, I thought I’d be by now
My head is a buzzing three-star hotel
Oh no, oh no, no, no, no no, no
But I keep it upstairs
Keep it upstairs for the grand finale
I keep it upstairs
Gonna be a blank slate
Gonna wear a white cape
But I keep it upstairs
Gonna jump out of a cake
With my heart on a string
Keep it upstairs, keep it upstairs, keep it upstairs
The National, “Blank Slate”
Holy crap is dying of cancer depressing. I know that it ends (best case) in my home surrounded by my family, and hopefully with enough pain medication that I am not in agony.
That’s BEST CASE. From what I have read, A lot of people dying of cancer do have pain behind what the medication can dull. In some cases, they come in short, restless bouts of wailing heard by loved ones. For others it is more prolonged and/or more subtle. When this suffering happens, it can leave indelible scars in the memories of the loved ones we leave behind. I have not been the caretaker for or at the death bed of someone dying of cancer. I’m a newbie to witnessing death in that way, and most definitely am a first-time dyer.
Being the person that I am, I want to know what to expect. There is a deliberate veil that is put up by doctors, by the family members of the dead, to blur our sights as to what actually happens at the end. I hate that I have to buy and read a book titled, “What Does it Feel Like to Die” (by Jennie Dear) in order to get a glimpse. Why can’t I just talk to someone about it? Those that die don’t live to tell their tales, and those that are close to it want to keep it in that mysterious, dark place.
And then, of course, there are the separate nuances associated with the myriad of ways one can die. Even with cancer, there is a mystique behind the difference types of death that come along with which organ failure(s) begin the process of your unique dying process. Straight answers are hard to come by, but I’ve gleaned that it’s the peritoneal cancer over my small bowels that will most likely be my downfall. I have no large intestine, so a blockage or invasion in my small intestine area would be bad. Again, I really hope that we can arrange for care and a death at home instead of shrivelled up in the hospital. But that’s all that I can do. Hope.
And then there will be emotional last goodbyes. How much can I control what my kids will see? And will I be afraid in the last days and weeks? I will not know until I am there. But what I can tell you, based on my experiences so far, is that a person’s attitude about their impending death can change suddenly and dramatically based upon the level of pain that they are currently experiencing.
Especially prior to getting my most recent pain regimen to work, I’ve had some pretty rough days of pain. The thoughts that began to occupy my brain went something like this:
I get it now. I get how someone can be ready to die. When there is more pain than there is a break from it? When you find yourself irrationally cranky with those around you because you don’t feel good? When you look forward to sleep to get some relief? Suddenly the life that you have been holding on to with all of your strength of being is a little bit easier to let go of .
I imagine that this is why it is often said, especially when people die of cancer, “at least he/she is in a place where he/she is no longer suffering.” How about I just take a pass on getting to the place where I am suffering so much that I want to die to escape it altogether? Something tells me that I am not sure that I am going to get that choice.
All of these weighty visions upstairs make a person top-heavy. It’s a wonder that my head doesn’t just fall over mid conversation, to reflect the relative difference in mental burden between myself and the person I am speaking with.
What was my original point again? Oh yeah, dying of cancer, and especially young of cancer (leaving your spouse to finish the next 4-5 decades you get to miss out on) is a horribly depressing thing. So much so, that we simply cannot withstand such intense sorrow, existential dread, and panic, indefinitely. Depending on the length of between that sharp, first sting and the burn of the final slap, we flow through cycles that allow for a buffering between the blows.
The human brain is a master at finding pulleys and levers and psychological coping measurements. They keep things balanced, and occasionally shift the load to the shelf when you just can’t take it any longer.
And so I find myself here on a summer holiday, and notice that my shoulders, of late, have become delightfully light. Three long acting morphine tablets apaced out through the day have produced a continuous and steady, fizzy flow in my blood punch. There are no peaks and valleys to my pain relief or energy levels. As long as I don’t miss a dose, I am relatively pain free without the haze or the need for the sleep during the day.
This is probably my last summer. I know it. I can’t yet see a path there, but let aome hope lurk beneath this awareness anyway. Surprisingly, I do not feel pressure to pick up and soak in the scent of every. little. flower. in this prairie. The very act of doing that feels so feels aggressive. Instead, I look at each day as another airy ball of fuzz blowing on the breeze. Every one that blows my way is another simple gift. I catch them between my hands without crushing them. I appreciate it, maybe make a little wish, and then blow it back away into the breeze. Each wish is as serious as hope for my treatment to remain effective, or as harmlesss as an inside joke with one of the kids, or a snuggle kiss goodnight, or a family movie, or simply… being? The act of doing nothing at all but watching the world is the most underrated experience ever.
July 15th tells me that it is not only summer, but mid-summer already! Where has all of the time gone?! It was not wasted. That is enough. Wasted would be joy stolen by fear and horror over what is yet to come. I won’t lie and tell you that worries over the coronavirus and the future of life in this country for my kids hasn’t entered the picture, but I have been able to keep it in the “things I can’t control box.” I retrieve calm from knowing that I am doing whatever I can that is within my span of control. And that those tiny changes will just have to be enough.
In this likely final, surreal summer of quarantine I have decided to take a psychological holiday from the horrible weight of cancer. As much as I can, anyway. A huge boon of possibly fantastic news has allowed me to do this, despite some increasingly severe allergic reactions on infusion day and increasingly low WBC counts. My first tumor marker reading, two treatments into re-attempting my prior treatment shows that my tumor markers are going DOWN for the first time in forever, and is possibly a great sign that my next set of scans will show stability or even shrinkage (only the acans can say for sure).
An a-typically positive response to previously exhausted therapy is just the kind of fantastic news that my spirit was begging for this mid summer. Throwing standard of care aside, I relied on a great deal of intuition to convince two oncologist that this was my next best step to take. On some level, my intuition was whispering good vibes before the oncology nurse called with the results. I am filled with gratitude for this psychological summer holiday to match all of this physical warmth that I’ve allowed to linger on my face. Dark, thick lovely woods are waiting miles ahead, but for now, I cherish the energy to meander in the meadow in the sun.
To the blackening shade ahead that must eventually come, I whisper “que sera sera.” You belong to the future. Today’s breeze floats like a fuzzy on the air. If you listen close enough, you might hear a small wish echo-“carpe diem” or perhaps, “joy” or even just a simple “thank you” as it floats onward to its next destination.