I woke up around 6:30 this morning, much earlier than I wanted, and failed to get back to sleep. I felt the faint sense of dizziness and vertigo I associate with high blood pressure – a certain sign that I was caught in the grip of anxiety. I woke up that way – my subconscious mind and autonomic systems somehow got a head start, no pun intended – and that discouraging fact amped me up.
I’m not sure it really helps at such a moment to tell myself I have perfectly logical, good reasons to feel the way I felt. Yesterday a blizzard dumped a foot of snow onto our corner of Boston and I was unable to help Steve shovel. By the time he was done, the look of exhaustion on his face was tinged with demoralization and worry. It hurts my heart to cause him that kind of complicated pain – even if, again, it’s all perfectly normal given what we’re going through.
I’ve also reached the point in this chemotherapy process when the ‘baseline’ no longer holds exactly true. I’m tired all the time now, to some extent, and the neuropathy no longer goes away after the first week: it has settled into my legs and lower back to stay. Low-level fatigue is an old familiar friend, thanks-no-thanks to the Crohn’s Disease. But the weakness and numbness in my lower body was – I had hoped – a distant nightmare belonging to the post-viral encephalitis. I’ve been proven wrong, and grappling with that wrongness is stressing me out.
We arrived at the hospital around 9:30 and my nurse, Paula, called me back for blood work straightaway. The port behaved so we could talk a bit. She always asks how I am doing and I know by now that I should answer her honestly: she’s my go-between, the messenger who delivers a preparatory, state-of-the-state synopsis to the oncologists. I confessed my fears and she listened. It did me a world of good. She asked compassionate, intelligent questions in return and put her arm around me before she passed me on for vitals.
I learned that I’d lost three pounds, but my blood pressure test set off the alarms again. I realized I was seeing a pattern: good things paired with bad things. One step forward, one step back into place. Sort of.
I was reminded of The Chariot, a card in the tarot deck that has been on my mind a lot the past few days. If you’re unfamiliar with tarot or skeptical about its usefulness, just bear with me: I’m sketching symbols, not sermonizing. The image on the card is a woman driving a Roman- or Egyptian-style chariot, pulled by a pair of tempestuous single-minded horses who each want to go in different directions.
The meaning of the card has to do with keeping a firm hand in situations where two powerful ideas, opportunities, or desires are fighting for dominance. I have always gravitated towards that image. For me, it sums up a very deep and difficult thing about being human and living a present, mindful life. I sat quietly while the nurse tried to read my blood pressure again, and the alarm went off a second time. Anxiety and level-headedness both made a grab for me. She tried a third time, I breathed deeply with purpose, and the numbers finally decreased just enough – by one digit – to make the machine stop screaming.
Afterwards, Steve and I sat in the outside waiting room. I don’t know if it was the best approach to try this, but I did my best to break down my fears. I listed all the positive, encouraging things. The port, for starters. My blood test results, which have been consistently encouraging. The fact that the chemo nurses realize I sleep a lot and Steve is usually listening in on meetings, so they give us a real room instead of a treatment bay.
In other words, I’ve done enough infusion sessions now to know the general shape of what’s going to happen, to make myself comfortable, and to accept help. To wit, it’s not the chemotherapy sessions that give me ruthless anxiety. It’s what happens to me afterwards.
During my appointment with the oncologist, I paid closer attention and limited my questions to that aftermath: how do I deal with increased nausea? Do I continue to take all the same meds at the same times of day/night? Will the neuropathy intensify to the point that I lose gross motor control? What are the danger signs that mean … well … danger?
A plan emerged, one that was reassuringly cogent and manageable with little extra effort on my part. I’ll continue the more powerful anti-nausea drug (ondansetron) past the first few post-chemo days, and use the compazine to fill in any gaps as needed. I am going to get a walking stick, emotional and social consequences be damned. As for unknown possible dangers that could develop, the oncologist said very clearly, “We’re not worried about you,” and Steve physically elbowed me to drive her point home.
After the infusion, we went home and I puttered. I managed to sleep for the first half of the session but by the second, I was starting to feel the steroid-induced restlessness creeping over me. I worked in the kitchen for a bit. Then I collected recycling. Then I realized I was cogent enough to write this blog entry today rather than tomorrow – and also, frankly, the chemo fog has been increasing in intensity and duration, too, so I might wake up in the morning with a smaller, more scattered sense of vocabulary.
Tomorrow, and the day after, and five to seven days after that are going to be what they’re going to be. And isn’t that the very concept I have to learn to manage for the next several years? For starters, radiation is looming large on the horizon. I try to wrap my brain around that next step and I just can’t even.
But as I’m sitting here on the couch and writing this entry, I’m looking inward at the place where symbols live in my conscious mind. It’s hard to explain – it’s a pagan thing, and also I’m no evangelical. Still, I think it’s important to say that I’ve been … hosting, I guess … different guides in that mental/emotional place for the last several months. Sometimes spirit animals, sometimes different manifestations of various gods and goddesses, who all embody traits or qualities I need to channel.
Tonight, instead, I’m imagining two horses. I suppose their names are Calm and Zen, from what I know of them thus far – and I’m staying up late because I want to be sure we’re completely unhitched for the night. There’s time enough tomorrow to struggle if needed: Tonight, we should all just aim for sleep.
Even if nothing goes wrong from this point forward, I know we’re going to need it.
medicinal sausage 