Words Like Locusts Flew From Her Fingers

14 Inches

I’ve measured the length of the latest surgical incision and it’s 14 inches. I didn’t count the number of staples this time. Maybe later.

The last couple of days have been pretty good. I’m getting into a routine and I seem to be improving a little bit each day, as is to be expected when one takes care and does what the doctor says.

I had been fooling around with the pain and nausea medications (basically, not taking them as often as prescribed), but — not surprisingly — I’ve found that to be an unproductive approach. So…

I’ve got oxycodone (the real stuff!) — 5 mg every 4 hours, and odansetron (generic Zofran, an anti-nausea drug) every six hours. I hadn’t thought I was really nauseous, but then it occurred to me that when you’re finding yourself swallowing a lot more often than usual to calm down a weird feeling in your guts — that’s nausea. Not terrible nausea, but nausea nonetheless. The odansetron is interesting. It doesn’t make me feel “drugged”. It just kind of evens everything out. Good stuff.

While I was in the hospital, my IV painkiller was Fentanyl. It’s a weird thing to be reading about these different drugs online and to see that they’re typically prescribed for cancer patients. Weird, because it reminds me: oh yeah… I’m a cancer patient now. Hm.

So, anyway… here’s a picture of me doing the “Danger! Danger! Will Robinson!” thing. I have no idea why. Maybe it’s the drugs.

Danger! Danger!

Home!

I got home yesterday (Monday) afternoon. Yippee! The Plan, as discussed a bit in yesterday’s post, is to heal up a bit from this surgery before beginning systemic chemotherapy. After the chemo will be another surgery with the HIPEC this time.

I’m feeling quite weak still, so not able to do much around the house. Mark’s being a huge help, though, so… yay Mark! I’ll write more as I get a bit more energy.

A New Plan

I thought you might enjoy this picture of the bruising on my wrist from operative placement of an arterial line. It looks terrible, but it honestly doesn’t hurt a bit.

Well… the New Plan is based on the New Information, that being the pathology reports from last week’s surgery.

It turns out that my low-grade adenomucinoma has evolved in a rather short time to an “intermediate grade” mucinous carcinoma. As with the previous pseudomyxoma peritonei diagnosis, this stuff is pretty much everywhere in my abdomen. The surgeon removed and the pathologists examined:

• Peritoneal implant
• Adhesion
• Peritoneum, right lower quadrant
• Appendix
• Falciform ligament
• Greater omentum, omentectomy
• Transverse colon mesentery, resection
• Undersurface of right hemidiaphragm

While my tissues no longer have the appearance of the low-grade mucinous peritonei, neither do they have any of the dreaded “signet ring” cells, which is the sign of a high-grade peritoneal surface malignancy. So… I’m an “intermediate grade” and while things could certainly be better, they could be a whole lot worse, too.

I’m going to start on an intravenous “systemic” chemotherapy probably in about 4 weeks. That will be relatively easy because it will happen right at my local Kaiser Permanente clinic in Fair Lakes — only a couple miles from my house. My understanding is that the drugs they typically use for this kind of chemo aren’t the sort that usually make your hair fall out. If you want to shave your head in sympathy anyway, though (Leah!), please feel free to do so.

Then — at some point after the IV chemo is done, I’ll have more surgery (whether laparoscopic or an open procedure is unknown at this time) for a “second look” at the tumor situation and for the long-awaited HIPEC treatment (that’s the heated intraperitoneal chemo).

So…sigh…this isn’t all going to be going away quite as soon as I’d hoped. However, I do have confidence that I’m getting the best medical care available for this kind of cancer and I’m optimistic that Dr. Esquivel will be able to kill it all off eventually. Keep in touch! I love you all!

A couple not-so-good days, but better again!

I had a couple of days where I pretty much felt like crap — lots of abdominal cramping/pain, some nausea, and pretty much ZERO appetite. Well… after an afternoon and evening of some..ahem…purging… I’m feeling quite a bit better this morning and actually had the ability to eat some food. I had a small bowl of fruit, most of a cup of a coffee, a couple tablespoons of scrambled egg, and about 1/3 of a biscuit. Doesn’t sound like much, but it was a huge increase over what I have been eating.

Since I did so well with the fruit this morning, I’ve also ordered fruit for lunch and dinner. Hey, might as well stick with something that’s working, right?

I also walked 3 laps around the nurses station this morning, so… hopefully I’ve now earned the right to just hang out in my room and watch TV and nap for a while.

Doing Better!

They’ve been really pushing the IV fluid into me today and it appears it’s finally begun working. My blood pressure is gradually going up and I’m producing more pee. Yay! And my pain has gone down. Double yay!

As far as the situation with the perfusion machine yesterday — it really was a complete freak thing. Dr. Esquivel is a very highly regarded expert and, as I wrote earlier, I don’t know the details of how it failed to work. It might have been something that they wouldn’t have normally tested ahead of time.

It actually may turn out to have been a blessing in disguise, anyway. If it turns out that I need systemic chemo, they generally want to do that BEFORE they do the HIPEC anyway, so…

My surgery went in unexpected directions in several ways. Dr. E. thought I’d almost certainly be needing at least a temporary ileostomy — but it turned out that my colon was in better shape than he’d expected. So, while I had a lot of goo, tumors, and adhesions — the only actual organ he had to remove was one he (and two previous surgeons) didn’t think I had: an appendix.

Upright and Somewhat Mobile

You know how I am. The first thing I wanted to do was get online and fix the oversized pictures Mark had posted on his blog entries.

So, here I am. I’m still on oxygen, but at least I don’t have the dreaded nasogastric tube this time.

My blood pressure has been REALLY low (last night it was 78 over 40-something) so they’ve reduced my “baseline” pain killing drugs. Bummer.

I’m having significantly more pain with this surgery than I have with previous ones. So… that sucks.

Also, for whatever reason, my body refuses to produce pee — so they’re pumping me full of IV fluids like crazy to try to “shock” my kidneys into doing their job.

“The Main Event” Status Report 3

Becky is back in the room….FINALLY!!!

She had a BAD time in recovery…  it took a long time before they could get her pain under control.  They gave her LOTS of different drugs.  She’s REALLY “out there”, though still very uncomfortable to say the least. ( though I think she looks pretty good, all things considered).

Which led me to some thinking about the “Pain Scale”  that they ask her to use  to report pain level- you known, the one that goes from “0-  Smiley Face/ No Pain” to “10- Crying Face/Hurts Worse”.  That seemed so absolutely and completely inadequate.  A little research on the Web and TA-DA, A REAL World Users Guide to Reporting Pain.

WHERE

0:  Hi.  I am not experiencing any pain at all.  I don’t know why I’m even here.

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.

The scale and artwork credit is due

“The Main Event” Status Report 2

Things did not go exactly as hoped for…. Becky is going to have to have additional surgery, and possibly IV Chemotherapy.

Starting with the good news;

The “Cytoreduction” part of the surgery went very well.  Dr E. got out the goo, and removed all of the visible tumors, and eliminated the adhesions.  He didn’t have to take any more major bits and pieces out in the process.

The “not so good” news;

The HIPEC part of the surgery did not happen.  They had problems with the HIPEC machine, and the length of time it was going to take to get the machine operational Dr. E felt represented an unacceptable level of risk to keep her on the table.  Putting a positive spin on it, since they did not do the HIPEC at this time are her recovery from this round of surgery should be more rapid, and she will be returned to the surgical ward directly, instead of via the ICU.

They found  and removed her appendix (the usual source of the problem with PMP), and it was “suspicious” from its initial pathology reports.   What happens will depend  on what comes back from pathology on that, plus the other samples he took.  He said not to be surprised if IV Chemo was required, and that we are probably looking at a 4 months course of treatment, with its associated side effects.

Also since they did not accomplish the HIPEC, he can’t be sure if there are still aren’t enough or a critical mass of non visible tumor cells to cause a recurrence of the problem.  She will have to have to be opened back up again to clean out anything new that might possibly have grown  and then have the HIPEC, though this probably can be done as a laparoscopic procedure (which is good as it is less invasive).

She’s been moved to post op recovery and should be on her way back to her room in a couple of hours…

“The Main Event” Status Report 1

They took Rebecca down to surgery at 0600 for final preps and wheeled her in.  So far so good, she’s asleep, on the table, opened up, and they are in the process of removing all of the goo, the tumors, and separating adhesions so the heated chemo will be able to flush through her abdominal cavity.

It’s 1100 now, and they are going to be at this for a while…..

“Colon Prep”

Rebecca’s nemesis was 4 liters of a magical elixir known as “GoLytley” -clearly based on the Audrey Hepburn character in “Breakfast at Tiffany’s”, no doubt because of that movie’s famous enema scene, which warned on the label of “possible bloating, cramping, abdominal spasms, anal tenderness (technical medical term: ouchy butthole), loss of appetite, loss of sexual function, loss of car keys, world class malodorousness, spontaneous combustion, and/or the inability to do even simple math”

After a few glasses of this stuff, as Michael Buffer, the popular professional boxing and wrestling ring announcer, comes calling to announce the “main event.”

“Let’s get ready to … rum … ble!”

I will skip the messy details of the Golytely aftermath. Suffice to say, it debunked the myth of the Conservation of Mass, as it was four liters going in and seven coming out.