I’m writing this entry at 1:35 AM, so technically, it’s already Day #2. But I digress.
At 8:00 AM this morning/yesterday, I reported for blood tests, vitals, and the required check-in with my doctors.
Oncology nurses are special forces: very few things faze them, and very few problems leave them confounded. My port is inset too deeply for the normal needle; they keep a special longer one on hand just for me. The adhesive used in the port covering bandage gives me a rash; they had a handy alternative at the ready. The port itself wouldn’t release blood into the test tubes; After I went through numerous ‘chemo yoga’ poses to bump the port back into position, the nurse simply said, ‘Cough.’ Bewildered and frustrated, I hacked a few times on purpose and it worked. Blood tests achieved.
However, the resulting anxiety from having to work that hard sent my first blood pressure sky high. My veins are the diameter of angel hair pasta. I never want to get another I.V. if I can possibly help it – especially not after going through with the port surgery.
With perfect zen, the nurse switched off the ‘DANGER, WILL ROBINSON!’ alarm, slapped the pressure cuff on my other arm, and told me to breathe deeply without talking. Success: we got a far better reading, and I got extra Ativan before the chemo infusion. All of this happened before 9:30 AM, before I’d eaten any breakfast much less had a cup of coffee. They were on their game when I was not, and I felt very, very lucky.
At 10 AM-ish, Steve and I saw the oncologist for a check-in. Chief among the topics of conversation: chemo in the wake of shingles while I’m still getting better. The doctor took a peek at the healing rash on my right arm and pronounced me well enough to go through with infusion #4. But, I’ve had muscle and nerve pain from the shingles during the interim between infusions, the time when the doctors hope those effects will abate, and neuropathy from chemo tends to follow established paths of nerve damage.
I’ve also got gastrointestinal chaos from the antivirals, primarily nausea and a real need for proximity to the bathroom (to put it delicately). Those side effects mirror what usually happens to chemo patients because of the treatment cocktail. Thus far, I haven’t suffered nearly as much from gastrointestinal distress, not to the extent everyone thought I would … thus far.
By 11 AM, I was curled up in the comfy pink treatment chair, hooked up to bags of chemicals, feeling loopy and sleepy from the megadose of Benadryl and other prep meds. I pulled down my woolly hat, closed my eyes, and coasted into fragmented dreams like usual – in between more trips to the bathroom than usual. Paula, my oncology nurse, drifted in and out with her usual quiet efficiency. Steve tapped away on his laptop. It’s the music of medicine, their nearly-silent duet of constancy and support.
By 4 PM, we were home. I did my usual post-hospital ritual: scrubbing up to my elbows with hot water, tossing all my clothes into the washing machine, swiping down with baby wipes, and sharing a decadent fuck-cancer meal with Steve. However, the wired/tired feeling from the pre-treatment steroids was already ramping up. I could feel it. I spent totally unnecessary time in the kitchen – get this – pouring dry goods into new containers and making labels. It alleviated the twitchy energy for a while, long enough to say my goodnights and settle down in bed. But by 11:30 PM, the storm circled back around and smashed into me like a nor’easter.
Insomnia: check. Restlessness: check. The urge to eat sugar-anything, even spoonfuls of Hershey’s syrup: hell, yes, check. Nausea, gas, and intestinal squirmies: check, check, check. I stopped looking at the clock around 2:15 and just rode it out. Sometime before the sun came up, I crawled back into bed and my eyes stayed shut.
Now it’s 10:30 AM. I’ve taken all the correct post-treatment meds (more steroids and more antihistamines to fuel the fire, unfortunately). I’ve eaten breakfast, and I’ve changed into loose lounging clothes to accommodate the Neulasta device on my upper left arm. Now the real waiting game begins: waiting to see what tomorrow and the next five to seven days will bring, ideally without too much anxiety- or medication-driven what-iffing. (See previous note about topping up on steroids and antihistamines.)
I will say this much: I have some newfound clarity and healing around the neuropathy, both the current chemo-related symptoms and the agony I went through after the chicken pox, thanks almost entirely to the shingles. I have been dryly humorous in previous entries here, recounting the moment I told the oncologist about the post-chicken-pox encephalitis and the neurological symptoms. But she believed me and listened intently, with genuine interest, without a speck of doubt about my trustworthiness.
I think she even used the magic words: ‘That makes sense.’ I made sense, of and about one of the most terrifying, physically painful, and unmoored times in my young adult life. That experience has now informed my treatment for this new challenge – a fight for my life – whereas before chemotherapy, neuropathy and its permutations had no place or purpose except to give me occasional nightmares.
So now, as I sit here waiting for the real fun to begin, I have perspective on the neuropathy in a way I haven’t had before because it. makes. sense. Just like the gastrointestinal side effects make sense, and can therefore help me cope, because of the Crohn’s Disease.
I’m not comfortable with this karmic synchronicity. Deep down I’m resentful as hell and raging at everyone else on the short bus about how newly unfair all of this is. But: I’ve done the waiting-and-healing game before, I can do it better this time because I have allies and weapons, and I will come out the other side again. And again. And again.
medicinal sausage 