Tag Archives: human suit

Had a fun-filled day at Emory’s Winship Cancer Institute today: a PET scan in the morning followed by a lumbar puncture (a.k.a. spinal tap) in the afternoon.

The PET scan was painless, an injection of radioactive glucose gunk and a large mocha-flavored inert chemical shake an hour before a 20-minute ride in a big, white camera tube. The tech was wonderful–chatty, informative, and amusing without being intrusive–and very, very kind. Also, at the end of the big, white camera tube machine, where the patient must spend a long span of time staring up at the ceiling, unable to move, the florescent overhead panels had been replaced by a triptych of decorated panels giving the illusion of springtime trees draped over a skylight, and someone had painted a flight of colorful butterflies on the ceiling itself. Made me smile. And I SO want one of those decorated florescent panels for my office.

The tech did recommend I not handle small children or go thorough airport security for a couple days until the radioactive contrast works out of my system. I’m radioactive! Awesome!

The spinal tap was far less painful than I’d feared. It was relatively fast, bit zingy-ow along the nerve a couple times but far easier than the bone marrow biopsy had been, and again performed by a top notch team who were reassuring and knew what they were doing.

Although, between the PET scan shake, the cheese quesadilla I had for lunch after the scan (I had to fast before it so was starving), the IV tranquilizer they gave me before the spinal tap, and my nervous anxiety, I got quite sick to my stomach afterward…in the elevator on the way back to the patient parking deck. Abject apologies to the poor unfortunate who had to clean up. 🙁

I’m still worried about getting a spinal headache tonight, so I’m pushing fluids and caffeine and am staying as prone as possible.

Barrage of tests done. Answers coming soon, along with a roadmap to treatment and finally, finally the beginning of said treatment…I hope.

Coming into work this morning after being out for most of last week, thought I’d been rash and/or way too optimistic as I panted, flushed and dizzy on the second-floor landing of the capitol stairs. Was seriously thinking about turning around and getting back on the MARTA train home, except I was too exhausted to make the trek back to the station. So I dragged myself to my desk, figuring it was my only option–regardless of whether it was in order to tough it out for the day or to recuperate enough to make the commute back home.

Found a big ole bill awaiting editing in my intray and started in on it. Couple hours later, felt much better. Couple hours after that, finished my editing pass and realized I hadn’t taken any pain pills in almost 12 hours, and that I felt the best I had in days.

I’ve since had to pop said pain pills, but, nevertheless, this was a very good reminder that coming into work is good for me. Takes my mind off the pain, keeps my brain actively engaged doing something other than going “ow” and feeling sorry for itself.

Still, I’m glad to be heading home now.

Scheduling communication was not spot on. I’ve now had the bone marrow biopsy and the echo cardiogram.

The marrow biopsy was ouchie but not agonizing ouchie. The person doing it was REALLY good. Fast and efficient, very experienced. I still yelped twice and was shaky afterward. The anesthesia jab was like that cold sensitivity you get in your teeth sometimes, except in my hip. The ouchie part was that, magnified. But again, could’ve been much worse. I was jangly from adrenalin by the time it was over, but to take my mind off it, I received another flower delivery!

From the wonderfully talented and incredibly sweet Louise Marley

And then I got a visit by one of the doctors on my team with lots of news ranging from unpleasant to o.O. The unpleasant is that I will also need to have a spinal tap. That is something I was really hoping to go my whole life without having to experience. Uck.

The o.O was an FYI that they were discharging me…tonight.

Seems the PET scan I need to have–which was previously scheduled for tomorrow at the hospital–for insurance reasons, needs to be outpatient. A lot of o.O about that, and the doctor seemed perplexed as well, but we’ve got that scheduled for next Wednesday, so okay-fine. And also the surgical biopsy of my tumor needs to be done by my Emory ENT surgeon, who is based out of Emory Midtown. They figured it made more sense just to send me home and have it done outpatient tomorrow than try to juggle his schedule and get him over to the Emory University Hospital.

So, rather unexpectedly, I’m home now. With a prescription for big narcotics and a tender hip.

Last I heard, I’m scheduled for an echo  cardiogram this afternoon but looks like my PET scan won’t be until tomorrow. Bone marrow biopsy either tomorrow or Friday…maybe? And tumor biopsy Friday.

Aside from the uncertainty on when exactly my various tests are slated for, so far, I’ve been really impressed by my stay at Emory University Hospital. The staff has been attentive, kind, and communicative.  And either hospital food has greatly improved since the last time I had the opportunity to sample it or this place has made a great effort to provide palatable fare. They provide a menu, you phone in your order, and around 45 minutes later, it arrives. Kinda like hotel room service… almost. So far, I’ve sampled the omelette, pancakes, and cheesecake. Much better than lime Jello and steamed vegetable medley.

There’s also a recliner in my room for Matthew, although he hasn’t quite gotten the knack of sleeping in it.

Got a lovely visit from Hugme this afternoon. Was a bit fogged from morphine so wasn’t at my most coherent. But it was nice to wave and babble words which may or may not have made sense.

And received these beautiful flowers from Dragon Con. Mwaaa. Feel all warm and fuzzy every time I seem them.

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.