Tweets for the Week of 11-04-2013

Post Chemo Session 1

So…chemotherapy. The actual session was fairly easy on me. Long, over seven hours of sitting in a chair attached to a tube dribbling toxins into me. But I tolerated it pretty well.

It was afterwards that really nailed me. As soon as I got home, I spiked a fever of 102. Tylenol brought it down to under 100; otherwise, we were looking at a trip to the ER. And since then, I’ve been incredibly drained. It’s taking all the energy I have to write this blog post. I’m a combination of incredibly exhausted and jittery. I’m not sure if the jittery is from the prednisone or the other chemo meds, but it’s a really unpleasant combination.

Also, my mouth is terribly dry. Food tastes weird…or doesn’t taste at all. But on an up note, the anti-nausea drugs appear to be doing their job. So far, no queasy. *crossing fingers*

Today is better than yesterday. And yesterday was better than the day before.

Chemo Begins on Thursday

Appointment with my oncologist today at Emory’s Winship Cancer Institute went pretty much as expected. All the results from the surgical biopsy still haven’t come in yet, but we’re starting treatment on Thursday anyway. If the biopsy results reveal some potential oddities or unexpectedness, we’ll add meds to the chemo cocktail. But the core treatment will remain the same, and consensus was that it was best to start treatment now (a bazillion yeses!) rather than wait any longer.

My treatment regime is currently slated to be six, 21-day cycles of the R-CHOP chemo cocktail (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) followed by radiation. Four of those cycles will be delivered directly to my cerebral spinal fluid via lumbar puncture…sigh. I’m also getting a neulasta injection after each chemo infusion to try to bolster my immune system since it’s already pretty compromised starting off the bat.

My first treatment, this Thursday, is expected to take something like seven hours (o.O!), although subsequent ones should be faster–five-ish hours or so. Debating if I should bring my laptop, try to get some work done, or if my smartphone and a book will be sufficient to keep me from imploding out of boredom.

Aside from the side effects I expected–nausea, hair loss, other various GI distresses, etc.–my doctor also said that the chemo might trigger early menopause. I wasn’t prepared for that possibility. Children were never an option for us, so early menopause isn’t really a devastating prospect, but I was kinda blindsided by the idea of it–having to deal with all the changes that come with menopause in addition to everything else.

My oncologist also said I need to avoid crowds in order to decrease the chances of me picking up a random infection or bug, which we already knew, but we hadn’t quite made the logical repercussions step.

I take the train to my day job. Public transportation is pretty much the definition of crowds.

So, for now, the plan is for Matthew to drive me to the capitol during my treatment on those days I’m well enough to go in. Also, I might ask my work folks to see if I can get a temporary parking space for the next six to eight months. I relinquished my spot in the capitol’s deck several years back when they jacked the price up. Not really keen on having to get a space again, but not really keen on having poor Matthew chauffeur me every day, either.

Tweets for the Week of 10-28-2013

Preliminary Test Results In and Preliminary Cancer Staging

Results from the lumbar puncture and bone marrow biopsy came back. Both were clean. So much whew, there!

The PET scan data came back, too, but is still undergoing a full/comprehensive evaluation. The preliminary review indicates no lymphoma involvement below my diaphragm, but possible lymphoma presentation in my chest–although if that’s the case, it’s relatively minimal.

So currently, based on these test results, my doctor believes my lymphoma to be at Stage IIE (“E” indicating “extranodal,” as the primary tumor is outside of a lymph node system).

We’re still waiting on the results of the surgical biopsy–which involves a chromosomal mapping to further identify the type of large B-cell non-Hodgkin’s lymphoma I have–in order to establish my treatment roadmap. The delay appears to be due to cultures actually having to be grown.  (Sigh.) Hoping these result will be in by my appointment on Tuesday. If so, we may begin treatment as soon as Thursday.

I hope so. My current pain management regimen has been getting less and less effective, and the tumor is now causing a significant amount of gum swelling and consequent pressure on an upper molar such that the tooth is now loose. I’m hoping I won’t have to lose it.

Still, we’re making progress. It feels horribly slow, but there’s nothing to do  but continue waiting.

PET Scan and Lumbar Puncture at Emory

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.

Reminder to Self: Day Job Routine = Good

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.

Tweets for the Week of 10-21-2013

Bone Marrow Biopsy, Echo Cardiogram, Flowers, and Unexpected Discharge…Because Insurance

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!

2013-10-23 17.33.38

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.

Emory University Hospital Thumbs Up

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.