Feeling like I'd turned a corner yesterday, I went out to lunch with Jody and ate the hell out of a chimichanga, a deep fried monstrosity the likes of which I have not allowed myself since high school.
In my excitement to eat, to want to eat, I completely forgot about the whole low residue rule of Oscardom. God, I'm such an asshole.
Remarked Sugarmouth O'Riordan at 3:31 PM
- That cold-sensitivity from the Oxaliplatin started in right away--I could feel it in my finger tips as they swung while I walked out of the onc clinic. I'm also quickly reminded of it every time I unthinkingly drink from a water fountain or wash my hands before letting the water heat up.
- Sun sensitivity: when they recommended wearing a "wide-brimmed hat" (just when is/was the Kentucky Derby?), I thought they were being overly cautious, but the couple of hours I spent yardsaling during yesterday's overcast afternoon has resulted in a burn across my cheeks and nose the likes of which I haven't seen since my first family trip to Florida as a pre-teen.
- Other side effects are trying to keep my tubing away from little inquisitive hands and the general uncoolness of having to wear a fanny pack for days at a stretch.
Speaking of which, I get unhooked from this bastard within the hour. Woot.
Remarked Sugarmouth O'Riordan at 1:29 PM
Aka "WTF is that big lump in your chest?"
Yesterday was my port placement, and despite the bad omen of being treated by Nurse Bug Eyes again and having to wait and wait and wait for the doc, it all went off without a hitch.
They put in my IV without too much trouble, through which I got my sedation meds again--the nurse compared sedation for the procedure to having a stiff drink at a party you really don't want to be at, very apropos--and then threw a ginormous drape on me, which I should have anticipated--what with all the ER I've watched in my day--but still took me a little by surprise. Fortunately they cut a hole in the clear plastic part hanging down for air.
The whole thing was a little weird and a little emotional (more stuff to make me feel Sick) but not terribly uncomfortable (that came later). The procedure itself involves implanting a PowerPort three fingers' breadth beneath my right clavicle.
They make an incision in the skin, shove the thing underneath, and then somehow thread a thin tube up my neck, into a nick cut INTO MY JUGULAR VEIN, AND DOWN INTO MY HEART. Notify all local vampires and incubi.
The point of having a port is that it will make the chemo process that much easier on my peripheral veins (especially now that my total number of treatments is back to eight), and the benefit of having a PowerPort is that it's tough enough to handle the infusion of contrast for CT scans, of which I'll be having many before I can officially wave the "Suck it, Cancer! I'm totally over you!" flag.
The nurses and techs assisting on my procedure thanked me profusely for not divulging my alma mater until things were winding down as apparently Dr. Tardy is a YOOGE ND fan (of the subway alum variety). You never know how that one's going to go--not a lot of people taking the middle of the road opinion when it comes to them Fighting Irish.
After the port was in, they wheeled me down to Oncology back to the infusion suites. Apparently I won't be getting my bimonthly dose of poison in a big bonding circle of wigs and nausea as many other folks do. I will *so* be bringing along the porta-DVD (and incredibly comfy blanket) that my super generous angel of mercy and bridesmaid extraordinaire Jenny G. gave me. Time to get that Netflix queue cleaned up!
So I waited about an hour to see my doc, where he gave me the big "Oops!" and I countered "Count your self lucky Jody isn't here for this news" and checked in to be sure I had the energy for it and we ran over side effects of which I am pretty well versed at this point.
Then I had crappy hospital food that I actually had to pay for while waiting another three or so hours for orders to be written and chemo bags to be sent over because it wasn't like they knew I was coming or anything except THEY TOTALLY DID.
Finally, after swallowing a fistful of anti-nausea meds, they got me hooked to the infusion tower, where they had Oxaliplatin and Leucovorin. I don't know if it was the nausea pills or the length of the day, but I took a nap for a half hour or so before I had to hit the head, which is always fun when you're managing all manner of tubes and other sundry nonsense coming out of your body.
Shortly after that, the anesthetic from the port placement started to wear off and I began to whine like a leetle girl. Fortunately, because I am on pain meds at home, they were able to rustle one (and a little later, a second) up for me without too much issue.
I caught a little of Wolf Blitzer in his cozy Situation Room (I just need to sign up for golf lessons and renounce my Socialist ways and Jody's brainwashing will be complete) in between getting some shut eye. About two and a half hours later, the bags were emptied and they called in the chemo nurse to get me hooked up and oriented to my lovely parting gifts...
After every bimonthly dose of Oxi & Leuco, I get hooked up to a fanny pack that constantly infuses 5-FU over a 46 hour period. I was on another form of this stuff during my radiation treatment, but I got to take that (Xeloda) in pill form and tolerated it pretty well, so hopefully it'll be much of the same for this.
All together, this regimen is known as FOLFOX which is the gold standard of chemo care for us colorectal folks, with the exception that I don't have a Day 2 infusion of Leucovorin (from Wikipedia's description). I'm also actually getting a shortened course as it seems like the typical run is 12 treatments over 24 weeks.
I am not currently eligible for or participating in any trials that involve other complimentary drugs such as Avastin (hey Wardo!) or Erbitux (this is the one that got Martha in some stock-trading troubles).
Side effects...the most notable one is that from the Oxaliplatin, which is a cold-sensitive neuropathy. Basically I'm going to have to watch it around cold stuff. I can already feel a prickle on my tongue and at the back of my throat if I drink something cold (even barely below room temp) and I get zapped if I don't wait for the water to heat up before washing my hands. Bring on the Warm Busch Light!
Then there's the general fatigue, nausea, diarrhea nonsense...word on the street is that I probably won't lose my hair but it will probably will thin a bit. This isn't so much a problem for me as I have some to spare, but I haven't totally ruled out the possibility of having to do something drastic if it gets too patchy.
My thought on that subject is that I will indulge the impulse that many young girls have when they hack away at their Barbie's hair, an impulse that I myself never had, and only in part because I wasn't allowed to have Barbies because they perpetuated negative and absurd women's bodies, gender roles, etc. Who knew my dad was so liberated?!
First, I'll give myself long, dramatic bangs, then a Betty Page, then something totally choppy, then a mohawk. Then, I will probably cry, attack the paparazzi sitting outside my house, and run right back to the cancer center to claim my free wig. Here's to hoping they do platinum blonde and/or pink.
All that said, I'm feeling pretty good today, my appetite/energy level are hovering around the new normal, and I am on the look out for entertaining pins and badges to decorate my infernal chemo fanny pack. This is the only one I have on there thusfar (quote from Firefly), tho I might have to throw on my KEXP and Cowhugger ones if/when I find them.
Remarked Sugarmouth O'Riordan at 10:57 AM
- Got to sleep in a bit
- Have had a decent appetite
- Went out with Mom and the Wee Vi to get a Jamba
- Sat outside with Mom & Vi (in the Pack 'N Play)
- Looking forward to dinner with Jody
Most importantly, I do not feel utter crap and haven't spent one moment in the prone position since getting out of bed.
ETA: I started getting all ouchy on the way to dinner and feel pretty rough right now, so good day but not great--the pain's still there but comes on later, and that's progress.
Remarked Sugarmouth O'Riordan at 2:58 PM
Ok, so for as cool as Iceland sounds, I don't think that I'm going to be able to convince Jody to take me there anytime soon, especially after the winter we had (100+"! Fuck!) and the fact that (1) Iceland is notoriously spendy and (b) the dollar is weaker than that paper towel that has to go up against Bounty in the commercials.
That said, I'm posting a new poll ("new poll!") to pick your brains to see what your favorite warmer clime is. Please post any write-in suggestions in the comments below.
PS: Stupid Pennsylvania...
Remarked Sugarmouth O'Riordan at 8:01 PM
I had my appointment with my NP, and she was pretty much no help at all, basically giving me a big shoulder shrug which said to me "I don't know what to tell you, suck it up for another couple of months, then check back in."
At least I got the green light to take Advil again. Tylenol doesn't do crap.
Remarked Sugarmouth O'Riordan at 7:40 PM
I am still tired and in pain and looking down the barrel of a two month long chemo needle and trying to mentally prepare myself for my mom's departure and figure out how the hell I am going to play Mother and Homemaker when she is gone.
I called this morning to set up an additional post-op follow-up with my NP to discuss this and some other stuff and the woman (nurse?) on the other end of the phone was all "Oh, that all sounds like it's a normal part of the healing process" and I thought she was trying to give me the "It's nothing" brush off and I was all "GET ME AN APPOINTMENT. I WANT TO SEE SOMEONE."
Done and done. What Sugarmouth wants, Sugarmouth gets.
Remarked Sugarmouth O'Riordan at 3:05 PM
Violet really likes to smack the crap out of the battery-operated sound module on her Baby Einstein (ugh, I know) exersaucer ("Moooo! Cow. Vaca."). Living in this Internet-powered world of ours, I was all "Maybe I could drop customer services a line and see what, if anything, they could do..."
So, I did and they were all "The button module is broken?" and I was all "Yeah, my baby is a brute" and they were all "Oh, that's ok, we'll send a replacement" and I was all "Even though my daughter seems to be the baby equivalent of an East German power lifter?" and they were all "It's really no problem" and I was all "Wow! Best customer service EVAR!"
Remarked Sugarmouth O'Riordan at 5:12 PM
I am super excited to report that both my brother and sister have submitted themselves to the scope (and before prep--ugh), and while two polyps were found in both cases, they were nothing to worry their pretty little heads about.
They're pretty much stuck getting checked every 2-3 years, but let's hope that I'm an isolated case.
Remarked Sugarmouth O'Riordan at 9:57 AM
Many, many thanks to Karen and her sister Joyce for having sent me the world's most lovely and heart-felt gift:
Karen picked out the beautiful swatch palette (how did you know I'm a total sucker for all things pink and green?) and Joyce was the crafty quiltmaster that made the whole thing happen.
Seriously--How cool is that? Not to mention the fact that I think I'm going to use it as inspiration for finally doing something that resembles decorating in our bedroom.
Our house is in desperate need of design guidance (much less a fresh coat of paint) and this quilt is just the thing to put me on the path to putting together a cohesive sleeping space.
So, thank you ladies! I absolutely love it.
Remarked Sugarmouth O'Riordan at 10:46 AM
Full disclosure: despite all my attitude and pontificating to the contrary, I am not a nutritionist. I am a bio major science geek wannabe that has taken a number of nutrition/biochemistry courses (at reputable, accredited universities, thank you).
What I don't have is a degree in nutrition, much less my RD (A year unpaid internship? I'm waaaay too old and have too little patience for that noise).
Still, I know just enough about nutrition to be dangerous and have numerous contacts who make their living/stake their professional reputation on their nutrition science smarts.
I'm also surly, grouchy, contrary, contentious, trapped on the couch, and armed with a laptop and wifi connection.
Now that I've painted you a picture, I thought I should mention that I've been playing my self-assigned role of shit-starter over at the blog of the alternative cancer therapy guru, Crazy Sexy Cancer, specifically on this and this post.
The posts of late--by an MD guest blogger--have been covering the issue of how "sugar feeds cancer" and how too much glucose circulating in the blood can compete with vitamin C for transport into cells, making them less effective from an immune function perspective.
I consulted the PhD that taught my Vitamins course here at UW Madison (site of the discovery of vitamins A & D, mind you), and she supported my position that the glucose/vitamin C/cancer connection sounded a little...well, iffy (she used a bit stronger language).
I'm not saying that sugar is tops (even though it TOTALLY is), eating nutrient dense/calorie poor food that is close to the earth--ie as close to its original form as possible and as low on the food chain as you can tolerate--is the lynchpin of good nutrition and one of the pillars of good health, in my dangerously semi-educated mind. And repeatedly spiking your insulin over a long period of time with unnatural, processed, refined, sugary junk is Bad Idea Jeans for a number of health reasons.
BUT. In my oh so humble opinion, to say that people living with cancer should avoid eating fruit (ignoring the relationship of glycemic load to glycemic index, I can't vouch for its accuracy, but here's an example GI table) is bad advice at best, irresponsible science at worst.
Remarked Sugarmouth O'Riordan at 3:11 PM
If I'm going to sit on my diseased and now apparently BROKEN ass for hours at a stretch, I might as well throw up a poll for yous guys.
What are you waiting for, get ta pollin'!
ETA: The poll has been restarted to be more inclusive for my dear, sweet, ever-faithful readers of the Southern Hemisphere. :)
Remarked Sugarmouth O'Riordan at 4:27 PM
...here is The Sad, Sad Story of a Little Girl and Her Dead Goldfish:
Remarked Sugarmouth O'Riordan at 3:35 PM
It has been brought to my attention that (1) my posts of late have run on a bit long and (b) that their content is quickly descending into the territory of "If you aren't here to mow my lawn then you best be getting off of it, young whippersnapper."
Apologies from the management.
Remarked Sugarmouth O'Riordan at 8:44 AM
If a hospital were a football team, the surgery clinic would have the first string of nurses and the radiology gets the third string leftovers. Or at least that's what my recent experiences have shown me...
This afternoon, I get to radiology stroke of high noon, right on time. I check in, get my Applebee's pager, and take a seat.
20 minutes later, I overhear a different receptionist repeat my last name several times. Putting on my best fed-up New Englander face, I bypass the four people waiting in line and go right up to the counter, saying "I'm 'McSo-And-So.' Is there a problem?"
Well, apparently not only did the other receptionist not check me in (despite all her apparently superfluous key-punching), but they were waiting on some part that was essential for my stick-a-needle-in-my-buttcheek-and-suck-out-some-fluid procedure. She gave me two $5 vouchers for my trouble, good at both the gift shop *and* the hospital cafeteria. Sweet--I heard that they were written up in the 'o8 Zagat's.
Another 20-odd minutes later, I again visit the admissions area, despite having been within if-looks-could-kill sight of the receptionist (the good one, not the boneheaded drop-the-ball one) the whole time. She gave good contrite face, saying that she had called back a few minutes prior and said they were still waiting on this mysterious part, without which my procedure was dead in the
water fluid presumably still building in my lower area.
Several squirming minutes later, my pager was cold BLOWIN' up, yo. Dropping it in its designated basket, I waited to be called upon by a nurse to take me back to the prep area. Eventually, said nurse approached and mouthed something at me, but I couldn't make it out as she was still several feet away. As she walked towards me, she stared and STARED at me, as if I was supposed to know who she was. "Samantha? Great, I'm Sugarmouth and I'll be taking care of you today..."
Continuing this protocol staring contest, she was nearly standing on my toes when she said my name. Or rather, she pronounced the first two syllables of the relatively common [Scots?-]Irish surname, and then, from the sounds of it, swallowed her tongue.
Ok, when faced with a name you have zero confidence in pronouncing correctly--say, like Samir Nagheenanajar, wouldn't you just skip formalities and query the person with their first name?
Not in this case. She was appropriately sorry about the botched pronunciation, and I'm sure I would have been a lot more forgiving (not being the first time I'd ever heard my married name butchered like a goat) had I not just waited nearly an hour on a sore bum and empty stomach, snarking "Yeah, probably best just to go with the first name..."
We get back to the holding area, where I'm supposed to "take everything off" and still get to keep my bra and socks on (?). As she's telling me this, she is STARING at my chest. Now I know they're fabulous, but more realistically, she was just checking out my awesome Cancer Can Kiss My Ass shirt. Still, the staring was so prolonged, I started to wonder how long it took to read FIVE WORDS.
Next, Nurse Bug-Eyes starts asking me about my procedure:
"You're having an abscess drained today?"Seriously, I'm not the medical professional here, people (and neither was she, apparently). Just show me where I can lock up my shit, put in my IV, and pump me full of sweet, sweet anti-anxiety meds so I can mellow a bit while you plumb my depths for that which doesn't belong.
"Well, I'm having fluid removed, but I've been told it isn't infected, so it shouldn't be an abscess..."
"How are they going to do it?"
"Um, you tell me?*"
Next, the IV (anesthesia?) nurse comes in and manages to spread all manner of shit all over me and my gurney, but gets my IV started without spilling any blood, so kudos to her. The topic of my upcoming port placement came up, and I know I'm an übersensitive word-choice bitch since getting ye olde cancer, but she went on to say that getting a port will "be nice for [me]." More convenient, yes, nice? I don't know about that.
Next, someone doctor-y comes in, gives me the rundown, and then says "You'll probably be going home with a drain?" with the inflection going up at the end, to which I responded "Is that a question or a statement?" Jebus.
After all this, three nurses talking over each other at me at once, glaring at a constantly beeping heart/O2 monitor, and taking my history for the SEVENTEEN THOUSANDTH TIME FOR THE LOVE OF GOD DON'T YOU HAVE A COMPUTER AROUND HERE?!, they wheeled me back, gave me the requisite drugs, and apparently liberated that pesky fluid from my pelvis.
The good news it that the fluid was clear (ie not likely infected) and the volume seemed to have gone down since Friday, so this thing might have cleared itself up on its own but I wasn't up for waiting.
ETA because I am a flighty dumbass: I didn't have to go home with a drain in my bum. Huzzah!
Speaking of not waiting, after wolfing down a mediocre cheese quesadilla and slice of chocolate cake (OMG the hospital I delivered Violet at had a much better menu), I totally booked out of there, nearly leaving with my IV still in**.
Well, since then I've gone for a long walk around the neighborhood with the babe, dog, and Grandma, and played with Little Miss to exhaustion. I'm not feeling 100% in the affected area, but I'm hoping that tomorrow will be lots better in that department.
* Yes, I did actually say that.
** Oops--I did manage to leave with not one but two EKG leads attached this time.
Remarked Sugarmouth O'Riordan at 6:00 PM
I woke up this morning feeling as crap as I did after sitting in an uncomfortable waiting room for an hour, so I knew something was up. I shot my surgeon an email, saying that my symptoms were getting worse, and fortunately he got back to me within the hour, saying that he wanted to try to get me in for a CT scan today.
Shortly afterwards, a NP called, asking if I'd had anything to eat or drink yet. Fortunately, my lack of appetite paid of in this instance, as I'd only had a few sips of Gatorade thusfar. She handed down the NPO command, asking me to hold tight until she called back with a time for the CT scan.
Other things going on today: a visit from the home nurse who had to make sure I could show Oscar who's boss and a service appointment with the water softener guy. I was one for two for the morning: Oscar's my bitch but our 28-year-old water softener had shit the bed. You win some, blahblahblah.
The NP called back a little while later, saying they had an opening for me at 2p, meaning I could drink liquids until 11a, which at this point gave me about 20 minutes to get caught up on a morning's worth of beverages. Have I mentioned that dehydration can be a serious problem for us ostomates? Yeah, great.
I tried to rest the best I could until 2p, but that was a little tough as I was out of pain meds. Mmmm, pilllllllllllls.
Mom and I both agreed that, despite my narcotic fast, I probably shouldn't be driving myself to the hospital, so she and Violet dropped me off, agreeing we'd wing pickup down the road.
I get to radiology (with several pounds of magazines, both to read and distribute to my fellow sickies) and they sit me down across from three large (we're talking pint-sized) Dixie cups of contrast.
I didn't have a problem the first time I drank the stuff, tasting like Crystal Light lemonade, but maybe it was the memory of my CL-laced PEG solution that made it seem better by contrast (pun intended) because this round of stuff was pretty gross, and was getting grosser (yes, it's a word) with every degree of temp increase. Even The Beast is tolerable when it's ice cold...
So, half-way through my contrast cocktail, the world's most hugely pregnant nurse calls me to have an IV put in. Usually these nurses make me SO MAD (like "what right do they have to be pregnant when my eggs are in all likelihood poached?!) but she was sooooo nice and sweet, asking me about Violet and giving me the right amount of pity/empathy and cluing me in to this mommy/baby co-op sorta in my neighborhood that costs much, much less (think orders of magnitude) than Violet's current day care arrangements...it would have been a total BFF moment if not for having to drop words like "cancer" and "ostomy" in our conversation (but then again maybe making friends with a nurse would be good for just that reason...).
ANYHOW. This nurse was super nice and managed to put in and flush my IV without busting my vein, restoring my faith in the IV-managing profession.
After I take a few more sips of the bevvie, I realize that the purpose of my slow intake of the contrast (one cup every 30 mins) is to light up the affected area, with the problem being that the plumbing doesn't make it to the basement any more, thus all the contrast in the world would do nothing to light up the ol' bowel.
At this point, I hail Nurse BFF, and she agrees that I shouldn't have to pointlessly drink more contrast, telling me that she'll go give someone the head's up and someone should be out for me shortly.
Shortly lasted closer to 15 minutes, during which time I started to worry that maybe I would have to drink all three cups and all this vacillating would put me behind schedule...because I am a perfectionist dork who doesn't want to put anyone out. I also wanted to get the hell out of there ASAP.
Slow-forward to the nurse getting me, me having the IV contrast run though my IV (which makes you all flushed and warm and feel like you've peed your pants, which you haven't but it's icky nonetheless), and then taking the scans. I tried to get some info out of the nurse (because I'm sure they know when they see something, at least that's what Dr. Green said on ER when he had that brain tumor which eventually killed him, stupid TV cancer) but she was all tight-lippy.
Finally, I get to have some food for the first time that day, so right before calling a cab (Violet resisted her nap a bit and went down later than usual) I picked up a short can of sour cream 'n onion Pringles (mmm...molded chips), a Milky Way Dark, and a bottle of water to wash down the sweet, sweet drugs I picked up from the pharmacy (only taking one of the two pills for the ride home, because even I know better than to get doped up before getting into a stranger's car, even if it is a cab).
I'm barely out of the hospital drive when my surgeon calls with the results. Talk about service! He said that they did see some fluid collected in my pelvis, and while it didn't look infected (thus my lack of persistent fever), he was going to put me on some prophylactic antibiotics in the mean time. They also said that there was some air in my bladder because, why not? Let's just have everything in my pelvic cavity break at once.
The solution to this issue is for me to go in Monday for an outpatient procedure where they put a surgical drain in my asscheek and leave it there for a week or so. Just when I thought I was done with tubes for a while...
Long story short, the nurse had said that she had hoped that it was nothing, but I have to say I'm glad they found something, because I'd rather live with ridiculous indignity of having a tube in my buttock than not knowing what was wrong with me.
This? Is just a nuisance. This is nothing more than a speedbump on my trip to NEDville. I can't let shit like this distract me from the big picture: I had--what they call in the biz--a "complete response" to my chemoradiation therapy. Because I am, as I've always been, FKN*.
*Translation for the unpointless, non-ND people in the mix: tough, awesome, all that.
Remarked Sugarmouth O'Riordan at 5:17 PM
Good News! My insurance company [who will remain nameless as long as they keep playing by the rules] finally paid the $14+K owed for the ovary transposition surgery I had back in December. Huzzah!
Uncertain News...? At my post-op check-up today, my surgeon raised concerns by my discomfort resulting from sitting on my bum for too long. I'm going in for a CT scan on Monday with the hopes of ruling out an abscess. The doc thinks I'm fine, but I'm pretty sure there's something wrong. Let's hope the professionals are right.
I've been feeling kinda blue today because I irrationally feel like I should be almost done, kinda like how when we drive home from Chicago we're always "we're almost home!" when we hit the Belvedere Oasis but the reality is that we have another 45 minutes of driving.
We would experience this same phenomenon on the drive from Monterey to San Francisco, feeling like we should be at our destination even though we know we have miles and miles to go. Let's hope this whole CT scan thing doesn't turn out to be a major detour on our trip.
Remarked Sugarmouth O'Riordan at 6:04 PM
- The insides of my elbows were super sore for several days. I have no idea what position they had me in for the surgery but...ouch.
- Walking is the key to speedy healing, so I made sure I got around at least twice a day, trying to go a little further each time. Fortunately I had been up and around once or twice before, so I was on top of things when the 19 year old boy nurse tried to wheel me and my IV out the door without securing my #1 receptacle to the IV pole.
- Awkward, uncomfortable, and fairly humiliating. All these things describe walking around with a catheter in place.
- I made myself look Oscar almost immediately. I also made Jody and my mom look at. It's fucking unnatural and foul as hell, but it's my new reality for the next several months.
- They changed the bag on the second (?) day. It felt like they were cutting it off of me with razor blades.
- PCA pain meds don't do anything for me, but I was still hitting that button like a Jeopardy contestant anyhow.
- On maybe the third day, they took me off of the epidural, IV, and catheter in quick succession. Every tube they took out made me feel lighter and more able of taking care of myself. Unfortunately, they did still have IV meds to give me, and administering these without the bag of fluid was a little tougher, ie they had to push them very slowly and they burned a bit.
- Fast forward to when one nurse was flushing my line with saline and something started to HURT. "Yeah, it can sting a little bit..." she said. "No, it feels like something is WRONG." She looked at the needle and said it looked a little red, so maybe she would just leave it alone, blahblahblah as she left the room. Yeah, I'm pretty sure she blew my vein. It felt all shreddy when she was doing the injection. Fortunately the next nurse agreed and they called down someone to put in a new line.
- Other souvenirs I brought home included a stray EKG lead and part of the covering of the surgery table that apparently got stuck to the back of my thigh. Nice.
Remarked Sugarmouth O'Riordan at 9:20 AM
So, this is the post that dare not speak its name: Oscar. Or more specifically, Oscar the Pouch. I'm going to give you the general rundown, then we will never speak of it again.
The surgery I had took out my rectum, forming an alternative reservoir out of the last stretch of my colon. I think this is referred to as a j-pouch, but it also refers to surgeries that take out the whole colon, so I won't use that term here.
The new plumbing is pretty bruised, so they reroute my business for that to heal (and during chemo, since apparently the trots are epic) via an ileostomy, which is like the better known colostomy, but it comes off of the end of my small intestine.
So yeah, I have a shitbag hanging off of the right part of my stomach. It's about as foul as it sounds, but fortunately I didn't cry the moment I saw it, probably because I had tortured myself with pictures of stomas prior to surgery.
Right, so a stoma is the external opening of my internal guts. What they do is they pull my intestine out of my stomach, then turn it back on itself like a turtleneck, stitching it to my abdomen.
Once the old bag is taken off (a pretty foul and painful process), I clean up the area, cut a a hole in the wafer (which is like a gasket) to size, caulk the wafer, put it over the stoma (aka Oscar), then snap a new bag on the wafer.
During the whole process, I have to hold gauze over Oscar's face so he doesn't get too...chatty (ileostomies are constantly running).
It's disgusting, I hate it, I can't wait until it's gone, but it helped to save my life and will probably save me some stress during chemo.
I've only changed the bag on my own once, and that was under the supervision of a home visiting nurse, who was super nice and knew just the right things to say. Example:
"You are doing a great job, you're doing this exactly right..."She also said that she knew I was going to be ok when I would waive her off, telling her to let me do something myself.
"How did you know I was an approval-seeking perfectionist?"
"You know how many people tell me to let them do it themselves? None."So yeah, that felt good and totally boosted my confidence about This Whole Thing. Feeling like a hostage to potential leaks pretty much sucks.
So Oscar--everybody, everybody--Oscar.
Now let's all do the socially polite thing and pretend that this conversation never. Happened.
Remarked Sugarmouth O'Riordan at 11:12 AM
First off, I would like to belatedly thank MMM for spontaneously joining me during/saving me from my completely unintentional and totally depressing karaoke rendition of I Will Follow You into the Dark back in Chicago, because I have a "Ooh! Pretty!" brain and basically punched in the song code when I saw Death Cab in the karaoke book, and there was this pretty intro, and I was all, "I'm such a cute indie girl with pigtails..." until the lyrics kicked in:
To stop the song would be to admit defeat, but to finish it was not just naming the elephant in the room but introducing him to all my friends, letting him get drunk, and then watching him take a piss in the coat closet.
Love of mine (Aw, so sweet...) Some day you will die (Ack! Choke!) But I'll be close behind (WHAT?! Oh GOD what did I do?!) I'll follow you into the dark (Flailing, gasping, drowning...)
Thankfully, MMM--ever the well-bred gentleman and Death Cab fan--lept to my rescue and accompanied me as I squeaked and stiff-upper-lipped my way through the song. Thanks, Matty.
Second--and much more upbeat--shoutout goes to Dr. Niebler who must have synched up her medical savvy, roomiefiend ESP, and sweet crustacean connections to deliver the following within hours of my receiving the path report:
That white thing laying across the legs? Is a RULER. These fuckers were enormous, at least an inch in diameter, and beyond delicious. Oh my GAWD, we just thawed them out, dipped them in butter, and went to town. For two nights in a row. And then we made crab salad sandwiches. And totally would have made crab omelets if I could have stomached an egg the next morning.
Fortunately, my appetite always seemed to peak right around the time that the crab appeared, so I was able to eat along with Mom & Jody with relish. I have and may never again see crab legs this fantastic, so I thank you, my fair Niebler, for such a thoughtful, generous, and indulgent gift. So best!
Remarked Sugarmouth O'Riordan at 2:42 PM
Getting back to the hospitalization recap...
My whole hospital food drama went something like this:
- Sometime on the first day, I finally get a clear liquids tray (after only being able to swab my mouth with cold water). Somehow I have the sense and awareness to check the included menu to see if my broth is vegetarian. It's not. I think I pick around what little I want to eat (not the broth, not the jello...), whining the whole time.
- I'm pretty sure I eventually called a nurse to have my menu order changed to vegetarian, trying to emphasize exactly what kinda veg I am. Fortunately, she too is a veg, so terms like "lacto-ovo" and "pescatarian" aren't a completely foreign language to her.
- The next tray is clear liquids veg. An improvement, but I'm getting pretty damn sick of seeing broth, clear juice, jello, and hard candy at every meal (we're working on over 3 days of this now), especially considering jello hasn't been in my repertoire since I was about 8 (gelatin = nasty).
- I think it was breakfast of the third day that they upgrade me to full liquids, meaning I get to have cream of wheat and a milkshake for breakfast. I am in heaven.
- Later that day, they give me a ton of meds--some by IV, some by mouth--all at once, on an empty stomach. A half hour later, I make the mistake of calling the nurses' station, complaining of nausea.
- They knock me back down to clear liquids for dinner. Apparently they vegetarian diet order got lost in the shuffle. I am totally bitchcakes.
- Fourth day, my surgeon comes in, talking about how they're going to send me home, maybe even with my surgical drain. I'm a little concerned that I haven't graduated to solid foods, much less full liquids, and I haven't gotten my "appliance orientation*" yet. He says that the nausea was probably due to all the meds, and gets me back on full liquids.
- Surgeon comes back an hour later, rethinking the plan to send me home with a gross but totally manageable drain. He yanks several feet of surgical tubing out of my belly. Ow.
- Lunch on the last day: grilled cheese and tomato soup. Ahh... (I'll leave out the gross powdered mashed potatoes).
Remarked Sugarmouth O'Riordan at 10:04 AM
Further Proof I Still Got It, and By "It" I Mean More Hormones Than You Can Shake a Radioactive Isotope At
I have spent the last three days crying, alternately sobbing with the rushing force of hope (having suddenly changed to relief) being released from four months of confinement, bawling from the crushing pressure of as many months of sometimes invisible but still unimaginable, incalculable, unbearable stress, and weeping at nearly everything else (today's PostSecret, old eps of Grey's Anatomy, the sweet sounds of my daughter babbling to herself).
"You're probably just hormonal," said Mom. Unfortunately, if Jody had said that, it probably would have been a whole lot less well received, but he wouldn't have been less right.
And though I can rarely recognize the symptoms initially on my own, I think she's right. Yeah, I've been through a lot these last couple of weeks, but I am still being a bit irrational in my reaction to some things.
So of course my next thought is: What does my constant crying mean, if anything? Am I, after all this, still whole? I know what all the docs said at the beginning and I eventually accepted it* but things keep happening to contradict them, so:
Remarked Sugarmouth O'Riordan at 1:12 PM
Thanks, guys. Thank you all so much for your cards, care packages, calls (when I was finally up for them), prayers, time and $$ to indulge my fancies in Chicago, and now happy tears.
We don't meet with a doc again until Thursday, so we should have more accurate info (ie "What does all this mean?") for you all then.
I've been doing pretty much the same thing these last few days: overestimate my energy level early, then sleep the rest of the day away. Yesterday, it was a walk around the block, today it was a trip to two rummage sales that did me in. I think I'm done with rummage sales--the ratio of bargains to pushy customers is waaaaay too low for my tastes.
But while I'm feeling pretty beat, I'm also still super upbeat. We still have a ways to go, but the finish line just got a lot closer.
Remarked Sugarmouth O'Riordan at 12:12 PM
We interrupt this delightful retrospective to announce that I received my path report today:
- All of the tissue was NEGATIVE FOR CARCINOMA & ADENOMA
- All 11 of the nodes they scooped out were NEGATIVE
As for myself, I am totally fucking blown away. I've been sorta atheo-agnostic of late, but between all of my ND friends (and their parents) and my dad's church connections (and all you guys, of course), I'm starting to think there might be something to that whole "power of prayer" thing...
I don't know what this will mean for my future chemo treatments, but you'll know as soon as I do.
ETA: Just made my appointment for my port placement & 1st chemo treatment: 4/24. Because of my sweet, sweet path report, they are knocking my treatment plan back to TWO CYCLES (which apparently translates to four infusions, why they don't just say that I don't know...) which means--should everything stay on schedule--that my last dose of poison will be the first week of June.
I so need to buy a lottery ticket.
Remarked Sugarmouth O'Riordan at 8:58 AM
- My first night in the hospital was as close to awful as you can get. My night nurse was one of those grumpy sorts who doesn't introduce themselves, further disposes with formalities like knocking before entering, and managed to wake me up something on the order of every 45 minutes without the slightest insincere "sorry." Fortunately that was the first and only time I had her.
- Ok, so she might have been justified in her concern: my BP was so low ("How low was it?") that even in my drugged and in pain state, I was freaked out: 88/46 (I usually run in the area of 110/72). The nurse put another bag of fluids on my IV...wouldn't have it made more sense to start a second line?
- The kickass Icelandic anesthetist visited me the next morning and said that my low BP was nothing to be concerned about--common among thin (oh yeah--they all kept calling me "thin!" I guess we are in Cheeseconsin, after all...) women with epidurals.
- Oh yeah--forgot that, too: I had a walking epidural for the procedure and recovery which was pretty awesome but begs the question--why don't they offer these to pregnant women? It sure would have been nice to walk/stand/bounce through the latter portions of my labor.
Remarked Sugarmouth O'Riordan at 7:34 AM
- I wore my superman shirt to preop. I had it on for all of five minutes after getting to the hospital, but it helped boost my mood nonetheless.
- The anesthesia resident was Icelandic. What were the chances, huh? I took it to be a very good omen. Not only that, but she was super nice & cool and kept me supplied with all manner of drugs, so yes, she's like totally my new BFF.
- For me, surgery was a non-event. Thankfully.
- If there is a hell, mine (should I go) will be a recovery room. Lights so bright that I couldn't bear to open my eyes, the pitiful cries of children coming out of anesthesia, shaking uncontrollably, freezing, and in incredible pain.
- Getting wheeled up to my room was a little less awful, but seeing Jody there made it all lots better.
- The room I had for labor & delivery was a freakin' palace compared to this one.
Remarked Sugarmouth O'Riordan at 6:02 PM
Thank god almighty, I am HOME AT LAST!
I'd give you all the big rundown of my hospital stay except for the fact that taking my first shower in four days wore me out pretty good, so I think I'm going to take some of my meds and take a cat nap...
Thanks for the scrip, Dr. Rog!
Remarked Sugarmouth O'Riordan at 11:09 AM