Adjusting to the oral chemo I am supposed to be taking for life – the meds that one of the doctors kept comparing to baby aspirin – was harder than I’d expected. After tipping four capsules from the bottle into a cup and gulping them down – the bottle has a big sticker which says “cytotoxic” and a hazard symbol which means “don’t touch it just swallow it” – I’d feel normal for a few hours except that water tasted unpleasantly metallic.
Dizziness crept in usually, which then transitioned into headache that was almost constant – but I could deal with that.
But by afternoon the pain in my gut would start. Sour. Aching. Wrong. Painful. Not quite anything I’d recognize as nausea but it would ruin my mood and my appetite, sapping my energies and making it hard to lose myself in my children’s stories of their school days.
And then a better day, followed by an almost good day. And then the pain comes back the day after. A better day. A pain day. Two pain days.
A random unpredictable pattern of discouragement.
And the same old nerve damage I’ve been living with for months persisting even when the doctors ask hopefully about improvements.
It made me wonder how and when I would find my new normal and if I could accept it if I found it.
I started to try to plan to plan to get back to work. Since on the other side of this recovery I am supposed to be left with a chronic manageable cancer -frequently compared to living with HIV by the care team- that will require I change my work values, my professional identity, my fees, my frame, my availability. Work for me has meant giving away all that I could and trusting I would get back enough to meet my needs.
And that scheme, obviously ain’t gonna fly in this new world, this new and altered life.
I was going to need some time and gather my strength and some distance from this trauma and neurochemical stability before I could even begin to sort that out.
I set up appointments for wellness care with my acupuncturist, my supervisor. I put a call into my therapist. I made an appointment with a nutritionist that specializes in chemo and cancer.
But then, I got really tired. New Years Eve day. Maybe it was bereavement- we’d lost a beloved family friend last year New Years Day. Whatever. I was exhausted and heartbroken simultaneously. I spent the day in bed.
New Year’s Eve I was nauseated and my head was pounding. I took my temperature and it was low 100.1, but high enough to be a little alarmed while on chemo, when you are immunocompromised.
But then New Years Day the sun rose and I saw that I was covered from my neck to my fingers and toes with a splotchy rash. And I hollered to my husband that we needed to get to the ER. So I didn’t have time to check in with my kids about how they felt about their young auntie’s death anniversary or time to make Korean rice cake soup in honor of her or the New Year or even check if anyone could bring themselves to eat it – because maybe this achey rashy fatigue meant I was allergic to the “game changing” oral chemo which was supposedly going to give me back my life.
Or maybe it was something else.
The ER docs said it looked viral, but a doctor from my oncology team came by and said she thought it looked allergic and “we’d just have to find some other meds – oh wait, your cancer is too rare so you won’t actually qualify for those trials… ”
Trials I thought. For fucks sake: am I suddenly in the realm of being excluded from trials?
“Oh, we’ll figure something out,” she continued, “in the meantime see your primary oncologist on Tuesday, stop the oral chemo for now and we’ll send you on home.”
With Tylenol and benedryl.
But I was still covered with an itchy rash and when I got home I ended up in bed with the shivers and a temp of 101.5.
But weirder: my hands and feet and knees and elbows and neck and shoulders but especially my hands became unbearably painful. My hands were actually excruciatingly swollen and so inflamed so I couldn’t do anything – not open a pill bottle or a drawer or turn a doorknob and just looking at my phone or text messages made me want to throw up.
And the kids were scared and acting out by bickering and sassing by the time I was able to flinch and wince down the stairs one at a time. And then I ask a kid for help getting an ice cube because I can’t open the freezer door and I’m met with a perfectly developmentally normal sarcastic sass-back and I yell and then begin crying and leave the room limping dramatically because it took all my energy to walk downstairs to sit with them through a dinner which I couldn’t eat any way.
And I miss them. Terribly. But they are tweens and so I try to respect their need to keep their distance and self regulate but when they do circle round and I’m not well enough to really be present this is the saddest reality of all. Because it undermines the single prime directive I have to hang onto, the ultimate bargaining chip I go all in with when I lapse into trying to negotiate with my disease or the Universe or God: The chip called “Take Anything Away At All I Just Want to be a Mother to My Children.” because actually I want more than that. I want to be a fucking superlative angelic ideal goddamn mother who is able to put my children before everything, always. And when I see myself being a mother in a limited way, a limited mother who can’t protect them from tiptoeing around on eggshells or when I am simply reduced to an horrible entity called “Your Mother’s Illness” I could stomp my foot and disappear into a giant hole of frustration and self-contempt like the one that swallowed up Rumplestilskin.
And I woke up at 4 am in pain from trying to roll over and canceled the healthy appointments I’d set up for Thursday because if I couldn’t walk down the stairs to dinner I sure as hell won’t be successfully commuting into the city.
And then i hyperventilated and sobbed on my groggy husband’s shoulder until it was time for him to get the kids off to school by himself because he actually has to do everything around here and at the office. And he let me sleep another hour before we had to leave for the follow up appointment.
And I shuffled into the head oncologist’s office and recounted my tale of sudden and extreme disability. I showed her my swollen hands and my fingers that wouldn’t type or text or hold a phone. I reminded her that I’ve lost 14 lbs and my rings were loose before that and showed her that they had become so tight on my inflamed hands that I could not twist or remove them.
I showed her the rash which she wasn’t all that impressed by. She told us she thinks the fever indicates that it’s probably a viral infection like 5th disease that I must have been exposed to somehow which isn’t a big deal unless you are immunocompromised. But joint pain and rash can be allergy too- so we’ll start you on steroids and see you back here Friday because we can’t go too long without my being on oral chemo or CLL antibodies, or at worst, more inpatient methotrexate but actually we would not stop the oral chemo long term for “something minor like this ” And even if it was allergic we’d have to manage it.
And a chill passed through me as I thought:
That ‘new normal’ I’ve been searching for. I suppose this could be it.
It could get better.
Or it could all keep unfolding
a random unpredictable pattern
What if new normal is here – and has been all along –
And all we can do is manage it.
The next day I ended up in the ER with swelling tongue. They are now assessing if I have genetic angioedema- a kind of intense allergic/autoimmune attack which can be triggered by the different cancer therapies, or even by the lymphoma itself, complicating my treatment plan. Cancer treatment is paused for now until we can move forward in conjunction with an allergist/immunologist.