“Don’t count the days, make the days count.”― Muhammad Ali
It’s been a quiet New Year here. H’s energy hasn’t been up to par since he had radiation in November and so when he isn’t at work – he tries to get in as many naps as possible as that is the body’s way of healing itself. He gets frustrated though with the low energy level and so we went for a walk yesterday to try and get the blood moving again. He made it a couple of blocks before he needed to turn around. Muscles atrophy quickly when you don’t use them. He has some pain as well that isn’t resolved – or explained. For the most part, it’s managed but it also gets frustrating. I guess there isn’t any other way to describe what it is like to live with cancer and while I imagine there are a variety of adjectives we could apply, frustrating seems to be the most comprehensive.
We were told that we would establish a ‘new normal’’ and that seemed realistic enough. This time last year, we all thought H was knocking on death’s door. He was in terrible pain, had lost thirty pounds, and looked ghostly (although I thought he was a handsome ghost). We were reeling from the emotional impact of a recent diagnosis and he was recovering from hip surgery, where they placed a steel rod through his femur to stabilize his pelvis which looked like swiss cheese after radiation killed cancer there.
We were learning how to truly live in each moment and my focus was making sure he was comfortable but eating three healthy meals a day. I learned everything I could about colorectal cancer from a layman’s perspective and became acquainted with the research that was offering hope on the horizon. We agreed that the goal was to keep him alive long enough to qualify for one of the clinical trials that would be coming online. I researched vitamins and alternative therapies that we could use in conjunction with traditional medicine and started very basic protocols to help boost his immune system.
He started the basic protocol for this stage… heavy doses of chemotherapy every other week. We went in the infusion room together with a blanket, a smoothie, a few snacks (which I usually ate while he slept) and my crochet bag. They hooked him up to the permanent port he has near his left clavicle and began dripping poison through his veins. He got cold and sleepy and so I pulled the blanket up to his chin as he pulled his hoodie over his eyes, adorned his headphones and slipped into a Benadryl induced nap.
I sat there and watched him. I watched to make sure he was breathing. I watched to make sure they were giving him the right bags with the right medicine. I was there to make sure that if he was thirsty or hungry I could get it. While he slept I also watched other people. I noticed other patients who were thin and ghostly – wondering what type of cancer they had. I listened as other caregivers spoke softly to nurses about challenges their loved one had had that week and I wondered how long it would be before that was me, before I sounded knowledgeable and informed.
Everyone was nice but I couldn’t help but wonder how the hell we had ended up there. H was a horse… an energizer bunny. When we were converting the building where our offices are, he started by eight in the morning and didn’t stop most nights until eight. He had muscles on his muscles. We had plans to retire and get in a Winnebago and drive all over the country. Of course, those plans included winning the lottery first because we were going to do random acts of kindness everywhere we went. After everything I had gone through, I had found a man who treated me with respect and accepted everything about me even if he didn’t understand it. I thought the universe was rewarding me for having persevered.
I sat there and talked to God, praying kind of… asking for comfort for Harlan while he was in that chair and asking questions that I knew were redundant. My faith wasn’t challenged per se but it was confused. I believe that everything happens for a reason, which means that this moment is perfect in its intention… what was the damn intention?? I sat there in silence, twisting yarn around my fingers inch by inch, wondering what the lesson was in this experience and asking the Universe to help me see it.
We paid attention to experiencing each moment. We sat together watching Game of Thrones from the very first episode and held hands. I’m not a very good ‘sitter’ and so I continued to crochet… making afghans for almost every niece and nephew I have as well as a few others and then when I couldn’t think of who else might want a giant blanket I started making baby blankets thinking that someday, my kids would want to have one.
We didn’t talk about cancer very much. We got to the point where chemotherapy, work, and sitting together was our new normal. Every day I read a little more about immune function and how to boost it. I started making fruit and veggie smoothies with vitamins and protein. He hated them. I don’t think they taste too bad but there definitely is a texture when protein is added that isn’t necessarily pleasant. Every time I handed him a big glass of green slush I would ask him to imagine how much love was in it – at least how much love it was made with – and he begrudgingly drank every last sip. We also asked the Oncologist about medical Cannabis and he was very supportive telling us that there was no other drug that treated nausea, pain, cramping, without the fear of overdosing or addiction.
H applied for a medical marijuana license and we visited the only dispensary in the state of Delaware. It’s an experience all by itself… it is surrounded by a ten-foot fence with barbed wire curled along the top and there is an armed guard at the front door. They weren’t going to let me in because I did not get a caregiver’s card but for the first visit, they allowed me to sit with the information officer while she described the options. The room looked like a classy head shop with all kinds of weed paraphernalia; bongs, pipes, vapes… and a candy counter with a LED menu positioned on the wall just behind it with the day’s specials. The counter was arranged as any other retail venue, varying varieties and combinations laid out and ready to distribute based on customer selection.
I recall sitting there is a state of disbelief… not judging that I was in a glorified headshop and getting somewhat nauseated by the prolific odor of marijuana but because everyone in there that wasn’t an employee – was suffering from something. I remember thinking how removed we are when it isn’t happening to us, how encapsulated most of us are in our lives and I realized that more lessons were just moments away.
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