Tag Archives: coping with cancer

So I’ve been admitted to Emory University Hospital.

They’re needing to do a bone marrow biopsy, echo cardiogram, full body CT (I think CT)* scan, and larger surgical biopsy of the tumor. The doctor thinks I’ll need to be hospitalized through this week. Hopefully I’ll be out by the weekend.

Also, they gave me morphine. I thought the morphine would totally annihilate my pain, but it’s not. Although I care less about the amount of pain I’m in. That’s kinda progress.

[*Edit: After talking to a couple doctors here, clarified it isn’t going to be a full-body CT scan but a PET scan.]

Bad night. Pain reduced me to tears again as I waited for the pills to kick in and knock me out. Still hurting this morning.

Stupid human suit.

Doctor’s appointments have become a cocktail of anticipation-dread-fear-relief. Wanted to be clear-headed, sans painkillers, until after my appointment today, but that’s not really an option. Need the narcotics to blunt the pain in order to be functional. Glad I did all my prep and question assembling for today’s appointment yesterday.

My appointment with my new oncologist at the Winship Cancer Institute is tomorrow, making it exactly three weeks since the CT scan which identified the tumor in my head.

All this waiting has been maddening.

We tried to get me in last week, but no go. I do not think the folks in charge of coordinating appointment times share our sense of urgency. And I know it’s futile and pointless to think like this, but I can’t help but wonder: the tumor grew to 6cm in approximately three months. How much larger has it grown in the time I’ve been stuck in a holding pattern, waiting? *flail*

We got the results of the biopsy. It’s Large B-Cell Lymphoma.

So, we’re not doing surgery after all. Treatment is chemo, possibly chemo and radiation. My case is being transferred to Emory’s Winship Cancer Institute. They’re supposed to contact us tomorrow.

Chemo.

I’m…kinda numb right now.

No results back yet from the biopsy. Still waiting waiting waiting.

Something I’ve noticed at my last couple doctor’s appointments: some of my smalltalk circuits have shorted, notably the ones where folks ask me any variant of “How are you?”

My normal, reflexive, societally ingrained response is, “Fine” or “Doin’ okay,” but these days, I can’t seem to say that. It’s a lie. I’m NOT fine, not okay. But if I say, “Meh” or “I’ve been better,” people frequently follow-up with,  “What’s wrong?” And I don’t really want to go into the details of my situation every time someone exchanges pleasantries with me.

It’s particularly awkward with health care folks. Obviously, that question is essential for doctors and nurse practitioners to ask, but when the phlebotomist drawing my blood or the nurse taking my temperature asks it, I find myself flailing for a noncommittal answer that won’t invite follow-up.

I’m overthinking it, I know.

My appointment at Emory yesterday was less putting together a definitive action plan and getting questions answered and more information gathering/expanding than expected.

They took a biopsy. Actually, more like five of them, depending on how one defines a unit of biopsy. Hopefully we’ll get results by early next week.

My doctor–after a very thorough exam, reviewing my CT scan, and having a consult with other Emory specialists–outlined a list of things my cancer could be and why a definitive identification (i.e., biopsy) is necessary. It seems that lymphoma is a possibility, and if it is that, treatment wouldn’t be with surgery but with chemo, for e.g.

So, yeah, still in a holding pattern. But it’s a different, “moving forward” sort of holding pattern.

I’m feeling pretty positive. We were at Emory for nearly five hours straight (and the place is a labyrinth!), and in that time, the Emory health care folks really REALLY engendered confidence.  My doctor’s team was totally on the ball. The nurse practitioner recognized/anticipated my symptoms and asked me focused questions about them before I brought them up. I really do feel I’m in the right place to get the best care for this.

Now in the “counting down the hours” homestretch until my appointment with the head-throat oncologist tomorrow morning. The wait has been interminable, full of antsy impatience and dread.

On the one hand, I’ve been finding myself trying to savor odd little moments, like the view of the late-afternoon city skyline through the train window on my commute home from work or the comfortable peace of sitting beside my husband on the couch watching a movie on the television.

And then there are moments I definitely did not savor.

Two of the meds that the ENT prescribed me last week–a short course of a powerful muscle relaxer and a tapering dose of prednisone–ran out a couple days ago. It seems together, they were keeping the excruciating headaches at bay. The pain came back Tuesday night, so bad I was reduced to tears as I waited for the combination of Vicodin and a less-powerful muscle relaxer to blunt it. I’d been without this particular intensity of pain for a week, after experiencing it almost daily for the last several months. It’s amazing how quickly the body forgets pain. I’d forgotten how utterly draining and debilitating it is. I don’t particularly appreciate the reminder.

And then there were the numerous episodes of emotional fallout.

Nighttime for me is always the worst. Might be because I’m one of those unnatural creatures, a morning person. But at night, if I don’t drift off immediately–and I rarely do, as I have been a longtime insomnia sufferer and the tumor hasn’t particularly changed that–my mind spirals out worse case scenarios behind my closed eyelids until I’m overwrought and exhausted. And sleeping is even harder now because the tumor precludes the possibility of sleeping on my left side and makes it difficult sometimes to remain prone. If I shift over onto my left side in my sleep, I’ll inevitably jolt awake from a panicky sense of suffocation because I can’t draw any air through my nose. Even if I do happen to start drifting off, just the sounds of my own labored breath can sometimes wake me.

So, yeah. I want to get the ball rolling on getting this thing out of my head. But I’m also wishing I could have just a little bit longer to enjoy the small bits of day-to-day tranquility that I used to take for granted before I have to embark on the next step of this battle.

I consider myself to be fairly cynical and jaded, but sometimes, people surprise me. Right now, I’m beyond surprised. I’m thunderstruck, bowled over, moved to tears–a lot of tears–by the immense outreach of support I’ve received from friends, colleagues, and complete strangers.

It’s humbling and uplifting, being the recipient of so much compassion and generosity. I keep trying to find some better, bigger way than “thank you” to express the huge, expansive feeling in my chest, come up with words large enough to encompass the magnitude of my gratitude and articulate enough to describe how much your support means to me.

And I am having utter and massive word fail–which, on the writerly front, is kinda dismal. But on the campaign to kick cancer’s butt front, I’m calling it a big win.

So: Thank You.