Lightly Organized Chaos

Let me give a brief timeline of the last week by way of update and explanation of my relative absence from life.

Wednesday 10/1

Got the final biopsy results which surprisingly indicate that the tumor isn’t a GIST, but a leiomyoma – which is a benign, non-cancerous tumor. While the oncology team has been careful to point out that the biopsy only represents a small number of cells in the tumor, this is at least good news.

[For the record I only figured out that this is non-cancerous a minute ago (why don’t they tell us these things?), and Missi hasn’t even heard yet (she’s asleep).]

Thursday 10/2

Woke up at 5:30 am with a temp of 102.2, which climbed by 6:30 am to almost 105.0. Took Tylenol and started a 3-day argument with Missi about going to the doctor’s office. I ended up agreeing to getting blood samples, urine, and chest films taken locally and having the results sent to Baltimore for examination. But mostly I slept as much as I could.

Friday 10/3

More sleep. I don’t think my temp went above 103.5, but I don’t really remember much.

Saturday 10/4

I ate something on saturday, but not much. I felt better; stayed up for a few hours at a time, and my temperature was in a more “normal” fever range of 101-102.5.

Sunday 10/5

Feeling much better, I managed to actually be hungry at some point. My temp never made it past 101.4. I broke down and asked for chinese food in the middle of the night. This marks the first time that I’ve eaten something I’d recognize from my childhood since the operation. As a side note, Shanghai Cafe Chinese Restaurant, has pretty good szechwan shrimp.

Monday 10/6

Pretty much back to normal after what I’m arguing was just a cold. It was pretty grim, but isn’t everything after major surgery? I also stopped wearing my heart-hugger as a matter of course today. I’ll wear it if I expect to need it, but otherwise, I’m flying solo.

Tuesday 10/7

I shopped online, then chilled and realized that I was felling well enough to be bored. I ended up inviting James, Darya, and Scott over to watch the debate. I won’t comment on the debate, but I think we had a decent time.

Wednesday 10/8

Went to lunch with Galileo (sushi), and then stopped by my research group’s weekly staff meeting. Charles drove me home where I promptly collapsed with exhaustion. I guess lunch and a meeting are my limit at the moment.

So that’s the last week. Hopefully the unanswered e-mails and open questions were addressed in the account. I look forward to hearing from (and seeing!) you all before they put me back under the knife. I’ll also keep you updated on the nodule on my lung (going for a CT tomorrow) as I hear more.

The definitive results won’t be in until later this week, but the preliminary finding is that I have a “GastroIntestinal Stromal Tumor” (GIST). A GIST is a type of sarcoma, which in turn is a type of cancer. It’s pretty rare (of course), about 3,000-3,500 cases in the US annually. The good news is that they’re talking cure not treatment. But it’ll be another open surgery (the tumor is badly placed for lathroscopic surgery).

In other news there is apparently a nodule on my left lung and some kind of spots on my kidney.

My next step is to get another CT scan, this time with IV contrast (or possibly a PET scan). We’ll know more about all of the above masses after that scan. Pending new information from the coming tests, I’ll probably be going back for surgery sometime around mid-november…

I finally had the cardiac echo yesterday, and after much trepidation (seriously shouldn’t the functioning of my heart valves have been checked before they cracked my chest open), the results were negative. My heart appears to be functioning correctly. We are left with much conjecture, but little knowledge of what caused me to pass out on Monday.

The result was that I was summarily discharged, and I’m back “home” once more. Of course I head back to the hospital early Friday morning for an upper endoscopy, but that’s a different blog post…

I’ve been admitted for about 24 hours now, and so far my tests have all come back negative. Specifically:

• Blood Enzymes
• EKG
• Head CT
• various Blood Pressure Tests
• Carotid Artery Ultrasound

I’m still waiting for a cardiac echo, but they’ve been swamped with emergency cases, so I’m going to have to stay another day. Since I’m supposed to be back on Friday at 7:15 AM for an upper endoscopy, I’m trying to get them to schedule it for while I’m still admitted. I think if the echo is normal, they would normally send me home tomorrow afternoon, but I’d only get to go home for about 40 hours before being back for another procedure — with the requisite shuttling back and forth between College Park and Baltimore.

I was back up in Baltimore today for the first of my post-op doctor’s appointments. Afterwards I stopped by Faidley’s for lunch. While standing and eating lunch, I suddenly felt lightheaded and I realized that I wouldn’t be able to keep standing. Gwen and Allan quickly got me a stool to sit on, but apparently I still managed to pass out for a couple of minutes while sitting.

Long story, short — the decision was made to take me to the ER at UMMS, where I’ve been admitted for observation and testing.

More details as they become available.

Now that we appear to have stabilized the server connection (it was out again late last week). I just wanted to post a quick note with a status update.

I’m up and about, feeling better everyday. The pain medication makes me a bit fuzzy sometimes, but I’m mostly focussed on my physical therapy and trying to get my lungs clear. I’m sleeping more and taking naps a bit during the day.

I’d like to thank everyone for stopping by over the last few days and I appreciate the outreach and concern I’ve received from all my friends.

Or maybe it’s day 7 of Sandro 2.0, but either way it’s basically a new beginning for me.

My first night out of the hospital was tough since I can’t really sleep flat, and I spent much of the night gasping for air. In the end I managed to get a couple hours of sleep, but this is going to be a on-going experiment for a while. Missi was a trooper trying hard to help me find ways to get comfortable — she headed off to work with little more sleep than I had.

I managed to get dressed, make breakfast and set myself up for the day in about 1.5 hours.

My first order of business of the day was to spend 5 minutes on the Internet discovering that I had developed metatarsalgia (probably from doing my PT in hospital slippers instead of sneakers). Anyway the doctors didn’t diagnose it and I think the PT personnel knew what was wrong, but didn’t treat it (gotta love overlapping medical jurisdiction). So the result was they trained me on a cane, and I hobbled around even worse than I have otherwise. Websites indicated judicious use of ice was the appropriate remedy, and I’m now much more mobile (well such as it is).

Jef came by a bit after 11am and we hung out and go out for lunch (it was as healthly a joint as we know how to choose in College Park, but that’s not saying much). It was a good time, and felt about as normal as I have since this whole process started.

I probably managed about 10-15 minutes of walking total. I’ll need to double that pretty rapidly. I also didn’t use my inspirational spirometer much at all (1 x 10, maybe 2 x10??). Hopefully tomorrow will be better.

I left the hospital yesterday, which ended up being both bus and stressful. Is started of the day on the wrong foot — literally. My left foot would no longer take any weight for walking, so what would have been a somewhat tough task of packing and getting ready to leave became excruciating. Whatever was going on, my normal pain meds didn’t weren’t covering it, and you don’t really get more.

But by 3pm, I as in a wheelchair and ready to leave the hospital for the first time in two and a half weeks. As much as I looked forward to getting out of the hospital, there’s was a considerable amount of fear. I’ll no longer be constantly monitored, help won’t be a button push away, and there won’t be handrails on every wall, but fear shouldn’t control our actions (and pretty much the doctors were done with me hanging around). I will be back regularly for check-ins, and follow-up on the growth in my abdomen.

By 4pm I was ensconced in Missi’s basement with a nice, cold water and not much energy left.

9/09 – 8:00 – 9:00 Location Prep (Rob)
9/10 – ?:?? – ??:?? Transport (Jim)
9/11 – 11:00- 3:00 visit (Jef)
9/12 – 10:00- 4:00 visit (Scott)
9/13 – available visits
9/14 – available visits
9/15 – 11:00-11:30 visit (might have family in town?)
9/15 – 3:00 – 3:30 visit (might have family in town?)
9/16 – 11:00-11:30 visit (might have family in town?)
9/16 – 3:00 – 3:30 visit (might have family in town?)
9/17 – 11:00-11:30 visit (might have family in town?)
9/17 – 3:00 – 3:30 visit (might have family in town?)
9/18 – 11:00-11:30 visit (might have family in town?)
9/18 – 3:00- 3:30 visit (might have family in town?)
9/19 – 11:00-11:30 visit (might have family in town?)
9/19 – 3:00- 3:30 visit (might have family in town?)
9/20 – available visits
9/21 – available visits

My cousin Reggie is planning to come to town for a few days next week, and that’ll dictate the schedule for 9/15-9/19, but I expect to need minimal help by then. Mostly just someone to come by and help me complete small chores (like lunch) or moving groceries.

I’ll re-evaluate tomorrow when I hear more from Reggie and possibly have local friends stop by occasionally check in on me as convenient. So far both Niv and Steph say they can stop by; we just need to sort out an actual schedule.