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Morning email

Re: Federal jury medical waiver request

As per my oncologist’s letter submitted last week, I am undergoing intravenous chemotherapy for stage IV colon cancer. Since this was not considered sufficient grounds for a medical waiver, I would  appreciate your assistance in making arrangements for the delivery of chemotherapy drugs to the courthouse should I be required for jury service, for the provision of the home nurse necessary to monitor the 46-hour continuous infusion of these cytotoxic drugs, and for ready access to bathroom facilities due to the nausea and diarrhea caused by these drugs.

Alternatively, you could inform me of the channels necessary to follow to have the decision on my request for a medical waiver reconsidered.

Thank you,
Sarah Goslee

 

Sorry for the radio silence; the first round of chemo last week was rough, and I spent as much of it asleep as humanly possible. Back to normal this week. Not that “normal” has very many posts in it either.

Onward

A year ago today* I got That Phonecall. You know, the one that nobody wants to get, and that those who have gotten it will never forget, the one that uses words like “malignant.”

It’s been quite a year: nine rounds of chemo, six weeks of radiation, removal of liver and colon and three weeks in the hospital.

I still don’t know how I feel about it.

And how do you celebrate such an anniversary? By meeting with your oncologist, of course.

The year of horrors was very effective. I have no cancer that is detectable by CT scan or blood test. But we’d like to make sure that I have no cancer at all, and the way to do that is more chemo. After running through various options, we decided to repeat what has already worked and do six rounds of FOLFOX, the IV chemo I spent last spring on. There are two other drugs that are used on metastatic colon cancer, avastin and irinotecan, but those are going to be held in reserve just in case. No sense in using all the drugs up front and developing resistance. It’s possible that I have a reservoir of FOLFOX-resistant cancer cells hidden away, but I responded so well to these drugs before that after the surgery and radiation it’s unlikely. And, well, if I do then there are the other drugs available.

I can do this. I did nine rounds already, and know how it works. There’s no longer the frantic air and the panic of last winter. Everything is as under control as it can possibly be. This is prophylactic, not immediately life-saving but a long-term investment. We’re being aggressive now, because I’m determined to have a long term. And chemo isn’t even the hardest thing I did in 2014. Besides, we’d talked once about six months of chemo; three months is considerably less awful.

My oncologist put the orders in while I was there; we’re starting as soon as possible, maybe even next week. I’m healthy enough to get going. Aggressive, remember? And I’d like to get it done and over with so I can spend the summer doing good things.

But it does offer me a dilemma, and one I need to solve quickly. I’m signed up for the Rainforest Writers Retreat in early March. My oncologist has no problem with shuffling dates so that I can go. This is not urgent like last year; moving a week won’t hurt anything. But three rounds in, will I want to travel that much?

I missed so much in 2014, and had so little time to devote to things nonmedical, I’m really longing for this brief escape. But if I’m sick and miserable, it won’t be much of an escape. I will probably cancel for this year, but I’m REALLY REALLY unhappy about it.

I’ve been called for federal jury duty for the entire month of February. I was actually looking forward to seeing how it works, but I think I’d better submit a medical waiver. It seems like “receiving intravenous chemotherapy” is probably an acceptable excuse.

How else does one celebrate such an anniversary? Pillow fort? Dinner out while food is appealing? Drinking heavily? (I haven’t been drinking while my liver grows back, except Christmas, but I’m willing to make an exception here.)

* It was Monday, January 13, 2014. The 13th is tomorrow, but I believe marking this on a Monday is just more appropriate.

Winding down

How to begin the end of 2014:

  • Yoga
  • A few pages of a Guy Gavriel Kay novel
  • Coffee
  • Pie
  • Selling a story

I am pleased that as rough as this year was I could still write something someone wanted to read, and even to pay money for. (Who am I kidding: good year, bad year – always thrilled that someone wants my fiction!)

Details to follow.

Holiday cheer

It’s in the 40s and raining here this Christmas week, which makes it a perfect time for these climate change carols.

But here, have one of my favorite holiday carols to cheer you up:

You’re cheered, right?

Wishing you a lovely holiday of whatever sort, with as few fishmen as possible.

The year in writing

2014 was the year of personal rejections: of the six stories I submitted, five either sold or received personal rejections and/or were short-listed. I only finished two new stories in 2014, but I suspect I can be forgiven for that. My overall numbers weren’t too unlike earlier years.

I’ve been submitting stories for six years, and in that time I’ve written fifteen stories that have made it to a submittable state. I’ve made 45 submissions, and five sales.

In that time, I’ve also written one and a half YA novels, and started an adult speculative historical novel and an adult urban fantasy novel in the same world as Horn. I have 13 short stories in progress; some of them have been that way for four or more years. I should add start date to my metadata. 

Submissions by year

  • 2014: 10 submissions of 6 stories; 4 shortlisted, 1 sale
  • 2013: 11 submissions of 7 stories; 2 shortlisted
  • 2012: 13 submissions of 6 stories; 2 sales
  • 2011: 6 submissions of 4 stories
  • 2010: 4 submissions of 4 stories; 2 sales
  • 2009: 1 submission, 1 story

Submissions by story

  • 2014: 1 submission, sold 2014
  • 2014: 2 submissions, shortlisted 1
  • 2013: 1 submission
  • 2013: 3 submissions, revised to editorial request
  • 2013: 3 submissions, shortlisted 1
  • 2013: 3 submissions
  • 2012: 1 submission, sold 2012
  • 2012: 8 submissions, shortlisted 1, sold
  • 2011: 8 submissions, shortlisted 2
  • 2011: 3 submissions
  • 2011: 4 submissions
  • 2010: 1 submission. sold 2010
  • 2010: 1 submission
  • 2010: 1 submission, sold 2010
  • 2009: 5 submissions, sold 2012

Need something to read?

Of course you do. And as a bonus, this star-packed fantasy anthology is a charity fundraiser for The Colon Cancer Alliance.

Fantasy for Good just came out, and it features old and new stories by folks like Neil Gaiman, Jane Lindskold and colon cancer victims Roger Zelazny and Jay Lake.

I suppose if you don’t want that fantasy stuff clogging up your bookshelves, you could just go give $5 straight to the Colon Cancer Alliance. That would be okay too.

ETA: I find it a bit odd to be purchasing something in support of a colon cancer charity, given what I’ve spent on colon cancer this year, but I am a recipient of all the research and education on the topic, and hey, stories!

Pleasantly boring

My life has been pleasantly boring the past couple of weeks. I’m back at work full-time, I’m eating pretty much whatever I want and as much as I want, a couple weeks of light yoga have left me feeling somewhat less fragile. Most things are straightened out again after two months of ignoring them, and the cats still love me.

Whew.

I don’t even have any doctor appointments for the entire month of December, except a 10-minute visit to get my oil changed, I mean mediport flushed.

Temporary normality, what a lovely change.

The creative part of my brain is the first thing to go when I’m stressed or sick, and it’s finally starting to come burbling back. I managed to revise a story and come up with a lovely new title. You should, if all goes well, get to read it and admire the title in early 2015.


Oh wait a minute, I am the world’s most horrible medical blogger. Really truly horrible! Because you know what? My CEA cancer marker was 1.5 at my last blood test right before Thanksgiving, but I got involved eating pie and watching Casablanca (and the lethargy involved in recovering from being really sick) and didn’t share the tremendously good news. You see, normal is anything less than 3.5. Fuck yeah! (My personal high was nearly 4000, so this is rather impressive.)


Okay, right. Moving along…

It being December, it’s finally time for Christmas music, but only the best for my loyal readers.

(via BoingBoing)

Here’s another must-see video, this time via Phil Plait at Slate:

Wanderers – a short film by Erik Wernquist from Erik Wernquist on Vimeo.

Happy Anniversary

My surgery was two months ago today. To celebrate, I saw my surgeon and got the butt drain out!!

Wa-hoo!!!!!!!!

There are not enough exclamation points in the world for that. I can now sit comfortably and sleep in my own bed. The only surface soft enough to rest comfortably with the drain is the couch, so I’ve been there or the Giant Recliner for the past five weeks (a hospital bed before that, of course). I moved to the couch once I could sleep flat. I can take a shower! I couldn’t change the dressing on that drain myself (it was some sort of fancy dressing only employed by Interventional Radiology, rather than a normal tape and gauze thing), so I couldn’t get it wet and thus couldn’t shower. I’ve been washing my hair in the kitchen sink and everything else very carefully in the bathtub. I can play with the cats without risking my dangling tubing. I don’t have dangling tubing. I can start doing yoga again. And after a day or two for the hole to heal, I won’t hurt all the time. It already feels enormously better without the tubing or the hard plastic connector under my buttcheek.

Other than that, the surgeon says I’m doing very well. I’ve been at work half-time for the past two weeks, and am planning to start back to full time on December 1. (Why start on a holiday weekend?) I gained two pounds, my incision is well-healed, everything is looking good. I’ve been walking, and walked a whole mile yesterday in our record-setting warm afternoon. (Gaining two pounds is excellent: I lost 25 while in the hospital and immediately thereafter, and it’s taken a while for my appetite and digestive system to return to proper functioning.)

I don’t have to see any of my doctors until 2015. When I talked to my oncologist last week, I was told to go home and fatten myself up, enjoy the holidays, and we’d talk about chemo in January. Once that’s figured out, I see my surgeon in February to make plans for reversing the ostomy, working around the chemo schedule. 2014 isn’t the end of hard-core medical treatments, but barring unpleasant surprises 2015 will be.

The drain’s the thing

I was asked about surgical drains: how they’re installed, what they’re for, and why I’m still sitting on one. I will warn you now, not only does this essay describe inserting tubing into torsos, it also describes what was easily the most painful and traumatic part of my surgery and hospital stay. I’ll indicate when I’m about to start that story so you can bail if you’d like.

Basic surgical drains are easy. They are put in during the surgery, and serve to drain leaking fluids out of body cavities while everything heals up. I started out with two of them, both JP drains. It’s a piece of tubing with a squeeze bulb at the end. A single suture holds the tubing in position. Every day it’s emptied through a little plug like the stopper on an inflatable ball. The bulb is squeezed before the stopper is closed again, which provides a bit of suction to help fluids drain. When they drain less than 25mL a day, generally, they are removed. One of mine was taken out while I was in the hospital, and one came home with me.

Because I developed an infection, I needed more drains to get rid of the nasty stuff building up in my body cavity. Those drains were a different type, called IR drains because they’re installed by Interventional Radiology. These drains are gravity-fed (although the internet tells me it’s possible to hook them to suction, that was never done for mine), and comprise a length of tubing with a bag on the end. The bag is emptied daily. The tubing has a stopcock on it so it can be flushed twice a day with sterile saline.

So. The IR drains. It is absolutely wonderful that abdominal surgery is no longer required to put in these abscess-draining tools. That would have been much more invasive than what they do now, which is use CT scans to safely place the drain without puncturing anything.

But still, it was a whole lot of not-fun, and if you are feeling squeamish you might want to stop here.

La

la

la

la

Ready?

The first IR drain installed was to drain a spot near my liver, on the right side of my body. IR fits in-patients in around scheduled outpatient work and emergency room patients, so it was rather late by the time they hauled me downstairs to the CT room. This is not so long post-surgery, and at the height of my infection, so I was pretty sick and already in a lot of pain.

For some reason the CT room was extremely warm – the staff were all complaining. The nurses and radiology tech boosted me from my wheelie hospital bed to the CT platform, which hurt. The tech started an IV. I asked for happy juice (fentanyl) and was assured I would get some, along with pain meds.

Then everyone disappeared.

I am now alone in an overheated room with no idea where everyone went or how long I’d be there by myself, in pain, on the table. (The radiology folks were certainly in the shielded room with the window and could see me fine, but I had no idea and wasn’t in good enough shape to really make that connection.)

Eventually they ran me into the CT scanner for preliminary images. You’ll notice I said nothing about actually receiving any drugs. When the techs came back into the room to set up for the actual procedure, I asked again, and was again assured that I’d be getting drugs.

They set up the procedure, which involves sterile drapes, disinfectant, and lidocaine. That’s the only part that didn’t hurt, but I could feel everything below surface level (just not as pain).

My understanding of the way the drain installation works is that they put a wire in first because that can be easily tracked on the CT scans. That part involves several passes through the machine. Having a chest/abdomen CT requires putting your arms over your head. I’d just had my entire abdomen sliced open: this was both difficult and extremely painful. (For the curious, there’s a distinct pop when the wire goes thru the membrane around the liver, but physical rather than auditory.)

My recollection (which could be wrong) was that I didn’t receive either fentanyl or additional pain meds until at least this point in the process, which was far too late. (They’re really only effective if given BEFORE the painful and stressful procedure.) Regardless, by this point I was in the most pain that I’d experienced at any point so far, including right after surgery, and was hyperventilating in the CT machine. I even came away with a bit of CT scan PTSD: my last scan was kind of rough.

Once the wire is in place, they’re done with the CT part except for one final check. The next part is to insert progressively larger tubing over the wire, then pull out the small bits. How do you do that? Jam it in. I could feel every stage. I don’t think any of this hurt; if it hurt at all it was subsumed in the rest of the pain.

Then they cleaned up, hoisted me back on to my wheelie bed, and hauled me upstairs. My recollection is that I spent the rest of the night lying in bed shaking, and that it took pretty much until morning to get the pain under control. Shock? Maybe. I don’t remember that part especially clearly.

Then there’s the second drain. Scans showed another abscess near the colon resection, and it needed to be drained. The best way to do that safely is to go in through the right butt cheek and follow the curve of the pelvis into position. As complicated as it sounds, that appears to be the standard method.

I said I didn’t want to remember it, and the nursing and IR staff agreed that they could arrange that. This time, they gave me a nice dose of something before sending me down to IR. Unfortunately IR turned out to be unexpectedly busy, and I had to wait for a very long time and it all wore off. And the only nurse on duty at that time of night was rather mean about me needing to use the bathroom while I waited, since I couldn’t walk very well and she had to help me. (Ability to take myself to the bathroom: major milestone in my recuperation, but one I hadn’t quite achieved yet.)

Eventually I got into the procedure room, which wasn’t roasting hot, and they managed to give me fentanyl before starting anything else, so while my plan to not remember any of it failed, it wasn’t anything like the first experience, even with the rolling on my side for butt cheek access. (Not at all comfortable; even this far out I can’t lie on my side for very long.)

Stupidest part about the butt drain installation: they put the hard plastic stopcock right next to my butt, so I’d be sitting on it all the time. I got them to change that, but then the only way to flush it would be for someone to disconnect the joint where the stopcock was, and I couldn’t do it myself. I managed to get someone from IR to come put in a new accessible stopcock before I left. He was extremely nice, and amused by the challenge. I have had an equal mix of extremely good and fairly horrible experiences with IR (they did my liver biopsy, which was as awesome as a liver biopsy can get).

The liver drain hurt nearly the whole time it was in: it went through the muscles between my ribs, so flexed around it a lot. It still hurts for the same reason, even though it’s been out for a week. (Compounded by foolishly wearing a bra for a long time without noticing that it was chafing on the dressing until too late.) Nothing but trouble, that one. Except for the whole “contributing to keeping me alive” thing, I suppose.

The butt drain hurts when sat upon, which is most of the time. I can eventually find a comfortable sleeping position with lots of padding, but it takes some wiggling. Somehow trying to remember what works doesn’t result in anything that actually works.

More grossness, and probably TMI, but might be useful to someone someday. I’m trying to be honest and true here, even when icky.

La

la

la

la

la

Ready?

I don’t know when the butt drain going to come out. The nasty lower abscess ate a hole in my vagina wall, and that fistula means that all the drainage stuff is weird and unpleasant. The butt drain may stay until everything heals up. It’s not a very large hole, so we are still hoping it heals on its own, but if it doesn’t I’ll need minor surgery to patch it.

I have another CT scan in two weeks to check on the size of the fluid collections (the remains of the abscesses, which after a month of antibiotics are sterile but still need to go away). They are all shrinking: there are several, but only two were large enough to require external drains; the body can reabsorb quite a bit. If the one with the drain it in shrinks away from the pigtail drain end, I may have to go back to IR and have them move it. You can imagine how I feel about that possibility. I’m hoping it either shrinks enough that it no longer needs a drain and I can get rid of this damned thing, or that it shrinks around the drain end instead of away. My mother wondered if I could get it to slosh in the right direction. I’m certainly willing to try, I’m just not quite sure what direction that is.

I can report that it doesn’t hurt to get them out, no matter what it felt like getting them installed. I could feel the tubing sliding internally, but there was no pain even at the skin surface. I’d been a bit worried because they’d been in so long.

Now I just need to heal enough that the last one can come out. C’mon body, you can do it!

So much sleeping

I think that’s all I’ve been doing, at least that’s what it feels like. It’s helping, though: I have more energy and endurance, though not as much as I’d like, and I’m down to one nap a day instead of two.

My pulse has been fast since about the time I started chemo. One of my many doctors finally did a thyroid test and determined that I’m hyperthyroid, though I don’t have any other symptoms. I had a normal thyroid test a year ago, so this is new. (And really, after a year of chemo and radiation how would I know if I’d lost weight or lost hair for any other reason?) Wednesday I got a call telling me that I could see an endocrinologist in Danville on Friday, or I could wait until January. What do you do? You go where and when they tell you.

I found a friend willing to play hooky from work (thanks again!), so that worked out. I’m not supposed to drive until I’ve been off narcotic painkillers for a week. I’ll be able to drive next week (hooray!), but Friday would have been iffy, even if I were sure I had the endurance for a 160-mile round trip.

Since I was going to Danville anyway, I asked General Surgery if they could squeeze me in, and they found a slot. Good news: I’m down to one surgical drain. Other good news: it doesn’t hurt to get the drains pulled out, even if they’ve been in this long. It does feel rather odd to have something long and thin move through your body, but it’s a brief sensation. I feel so much better just to have them out. It’s easier to get out of the recliner, to move around, everything. And one of them hurt most of the time, and that pain is gone.

But of course the drain in my butt cheek is the one that has to remain. At least now I can sleep on my side so I’m not on it all the time.

The endocrinologist put me on a beta blocker to control the rapid heartbeat, and will start me on an anti-thyroid drug once she checks with my oncologist. She doesn’t think it’s thyroiditis, a short-term problem, and she didn’t feel any nodules or anything or see them on a CT scan which showed my neck (a good thing, though I have a neck ultrasound next week to confirm), which leaves Graves’s disease. The usual test for thyroid function is a radioactive iodine update test, but I can’t do that because I’ve had too many CT scans with iodine contrast agents.

None of the drugs I’ve been on have been specifically linked to thyroid problems, but I still wouldn’t be surprised if it’s messed up because my body is so messed up right now. The plan is to take the drugs for a while, with frequent monitoring. Once I’m otherwise healthy, if my thyroid is still overactive we’ll talk about more permanent solutions.

Because, you know, I needed another health problem to deal with right now. Bah.

At least fewer drains is a definite win.