Wednesday, September 30, 2009

T-Shirt Turban Lessons

Chemo chemo chemo. Ugh.

It went well today - I went in early to see the doctor and get a blood draw before my big drip trip. Good news all around: He was pleased with my tumor marker count from last week (27) and how my port is healing, and my PTINR is back to "perfect," which means my blood is as thin as they want it. Chemo was pretty blah except the very last part when the same woman as yesterday sat down by me.

Yesterday she'd been admiring one of my favorite headcoverings, a light, soft purple cloth I wrap into a turban, but despaired that she would ever be able to wrap something that complicated. I told her I'd show -nay give (it's too small for my big bald head anyway) - her the easy T-Shirt Turban that honestly looks pretty similar but is very simple to wrap. So, today I brought it with me, and we had headwrap lessons there in the chemo room. She seemed pleased, and I was happy to be useful.

I got a good nap this afternoon, in the middle of my Glampire reading, and while still not super-hungry in the evenings, fajitas brought by some kind friends were delicious. Allison and I went on a mini-walk to get our pseudo-exercise, and now we're watching Cinderella. I'm retaining lots of fluid, and it doesn't feel good, but when that's the worst of it, it's a good day for a Wednesday.

Tuesday, September 29, 2009

Musical Week

This week for low-impact evening entertainment, and to get my nose out of Glampire novels, if only for a brief time, Allison and I have declared Musical Week:
Saturday: The Producers
Sunday (the Day of our Lord) we rested, of course
Monday: Silk Stockings (1950s Fred Astaire flick)
Tuesday: Godspell
There's more on the docket, enough for the rest of the week, checked out from our phenomenal local video store, Casa Video.

Chemo wiped me out again today, and I didn't feel a whole lot like eating supper - not sick or anything, just not hungry. But Allison made this delicious sausage lasagna (see rampant sausage craving from Salt of the Earth post) and honeydew, so it wasn't exactly hard to eat either.

I'm getting my chemo pudge on again, and the uncomfortable breathing that comes along with it, but not too much else happening. And my port still rocks.

Monday, September 28, 2009

Bloodsuckers!

I had a pretty good day in the chemo room. I'm a huge fan of my port. Shirley just sprayed me with some liquid nitrogen plus numbing agent, and I didn't even feel when the needle went in. It took all of 3 minutes to get hooked up. There was no positional discomfort, no looking at my arm, wondering if it's beginning to start burning just a little bit, and I could use both of my hands, happily knit away, and feel obviously justified in asking the woman next to me about the sweater she was crocheting. And they say the first time is the worst time!

She also had to do a blood draw, which generally can be done through my port, but if it's for my blood thickness it has to be done from a fresh stick. [Pause in writing while Margaret's Coumadin alarm goes off - how appropriate! - and she downs her rat poison] My blood's too thick again, having gotten all messed up when I went off it for surgery last Friday, so of course this is the blood test I have to have most often. But a poke for a blood draw is soooo much easier than starting a good IV.

Chemo still knocks the snot out of me. Well, it's only Monday, so it's just starting to dribble out (strictly in a figurative sense. I'm not allowed to get colds while on chemo, and congestion is one of the few bodily dysfunctions that's not a common side effect for any of the drugs I'm on), but again it strikes me as bizarre to sit in a comfy, reclining chair, knitting or reading or snoozing for 5 hours, and have my limbs feel shaky and tired and weak when I get up. This week is not going to be too fun.

So, I come home, and go straight to bed for my afternoon rest. But do I sleep? No (incidentally, neither do vampires, ever). The problem is not insomnia or crazy thoughts. Instead, I'm addicted to teenage vampire romance novels in the form of the Twilight series by Stephanie Meyer. It's not something I'm proud of, but it has made a too-perfect distraction the past couple weeks and keeps me from sleeping when I all-too-often give into temptation to read when I lay down for a nap or for night. At least I'm resting! It also fills my mind with thoughts about vampires - the friendly, beautiful, sparkly-in-the-sun variety my friend Meghan calls "Glam"-pires. It's a bizarre situation, as I have to think about my own blood in real life and the people who suck it out of my veins (don't worry, Shirley is a very human, highly skilled infusion nurse, most definitely not a vampire) on a very regular basis. I promise this won't turn into a blog about Twilight; I started the last book today, so my obsession will conclude shortly. But I thought I should confess whence my thoughts have been straying recently.

Saturday, September 26, 2009

Salt of the Earth

Clue #1: The Weird Mouth Taste
My mouth doesn't taste normal when it's just hanging out doing nothing. It's not a really bad taste, not even really metallic, as people often describe happening during chemo, but it's not a good taste either. So I've taken drinking more limeade, water, sucking on mints, lemon drops, etc.

Clue #2: Cheese
Colby Jack, after holding a special delicious place in my heart for the past year, seems to have lost its zing.

Clue #3: Sausage
I've been having a severe and persistent sausage craving that I mostly haven't been giving into.

Clue #4: Chicken Soup
Allison made me a simple chicken soup yesterday, that being what I felt like I should be eating after surgery. I was pretty excited about it, as "store broth" is a sodium-laden guilty pleasure of mine. The first bite was disappointingly bland, but I figured she must have splurged on the healthy, low-salt, happy chicken broth. So I added my own salt (it took a lot, and it still wasn't as satisfying as usual).

Clue #5: Tortilla Chips
I was eating tortilla chips with my sister today - Restaurant Style, Full-Fat, Full-Salt, the kind that make your mouth a little tingly. And I realized that they really didn't taste salty to me. My lips felt like they were salty. Allison told me they were salty. But they just weren't salty to me.

Conclusion: my salty tastebuds are mostly dead. Yet another one of those irritating things about having cancer/chemo that's not lifechanging, not dramatic, but, well, it leaves an unpleasant taste in your mouth. And I try not to dwell on the flavor, because thinking about it makes it worse, and while all the cancer books encourage you to indulge your every dietary craving when your tastes change, I try not to be too spoiled rotten about it.

Tonight we're making spring rolls in hopes that aminos in the dipping sauce will simulate salty (well, technically umame) enough to satisfy my cravings. Plus, I have a thing for spring rolls.

I would also note that I have still been able to enjoy food a lot. I almost always have an appetite, and most things taste pretty much like they should. I guess just a little less salty.


Generally, I'm feeling well today. A little like someone punched me in the shoulder where my new port is - sore, achy, not wanting to move my arm much - but when that's the worst of it, it's a good day.

Friday, September 25, 2009

Seven Sugary Thoughts

My port's in! I now have a bump under my skin on the right side of my chest about the shape of a Mentos, and just a little bit bigger. The hospital run went well this morning. Some observations:

1) While the hospital gown was the least flattering I've worn, it had this brilliant feature of a special full frontal pouch with vacuum-like hook-up that they blew warm air into to keep me comfy while waiting for surgery and while in recovery. It's like having my own personal floor register. Someone should market pajama-bed systems like this.

2) They didn't put me all the way out, so while I did take a chemical-induced nap during part of the procedure, I remember when we got into the operating room being asked what kind of music I like. The doctors and nurses proceeded to rock out to some bluegrass tunes while getting me all ready.

3) Waking up from not-being-all-the-way-out was a lot easier and faster than from general anesthesia. I was able to carry on continuous, lucid conversation with my recovery room nurse (who, it turns out, plays fiddle), feed myself ice chips, and argue with my sister about directions on the way home (we were both right, but she might have been a little bit more right).

4) Getting ready for surgery, everyone looks a little bit alien, in sea green "pajamas," face masks - and hair coverings! For once, I was in the majority with my covered head, and my pink hat was rivaled in cuteness only by my surgeon's U of A print surgical cap.

5) I took a number of very long naps when I got home, but I've been up for almost 5 consecutive hours now, and I feel fine - my arm and chest are just a little achy.

6) No bandaids, no stitches. How did they close me up this time? Superglue!

7) Here's a picture. If you're easily grossed out, don't look, but I don't think it's that bad.




Chemo should be a breeze next week with my new port! Oh wait, it's just getting the chemo into me that will be easier. Everything else (tired ick, stomach ick, intestinal ick, fluid retention, etc. etc. etc.) will be just as crummy/challenging. I still have half of this treatment left to go, but I will be getting poked a lot less.

Thursday, September 24, 2009

Worry

Here's the question I wish I'd thought of before 10:30 the night before I go in for surgery: I'm having this port installed because they can't get good IVs started in my one accessible arm anymore. They have to knock me out at least partways to put the port in. Don't they need to start a good IV to do that?

This is also a weird surgery because thus far in my life I've only had surgeries to remove offending body parts (wisdom teeth, Grazelda). This time they're going to put something in and leave it there until I have another sugary surgery to remove it. And all the pictures I've been shown of the exact kind of port I'm getting (a Power Port) show it as purple - they're going to put a piece of purple plastic in my chest!

Sugary's at 7:30 am tomorrow (well, Friday) west coast time, so we have to be at the hospital super-early. I should go to bed.

Wednesday, September 23, 2009

Graphs and Ckraphts

*This post is perhaps a little more "special interest" in nature. As always, feel free to ignore content that doesn't appeal to your brand of special.*

Here's the visual representation of yesterday's update, because I know at least some of you were thinking it:
[Thanks to AP for the graphic, and to krf for the extra encouragement]

And here's the project I'd been meaning to do for more than a month now, ever since my aunt sent me this great piece of silk to dye into the headscarf I always wanted.
An art-teacher friend here lent me her silk-painting kit, and this past weekend the weather and my energy and schedule aligned. My sister served as an excellent silk-painting caddy, handing me paints and dispersing salt as needed, and we produced this fine result:

And here it is on my head:



Tomorrow promises to be full: I'm teaching CHRPA school on wiring outlets, going swimming, eating pizza, and going to book club.
3 weeks after chemo my life starts to feel a little bit like normal... and then I have surgery on Friday.

P.S. Typing the word SURGERY always makes me think of SUGARY.

Tuesday, September 22, 2009

27

is my latest AFP (tumor marker) count, which is down from 301 last time (3 weeks ago), 1700 before I started chemo, and 6000 before surgery. Goal: 6 or under. Grazelda is getting gone. Huzzah!

Monday, September 21, 2009

Bonus Super Feel-Good Week

I went in for Therapy 3.1 today, the first day of my 3rd cycle, the first day of the icky 5-day week. And they couldn't get a good IV in my right arm (my left arm, with its thrombophlebitis and general clotted-ness, is verboten). One of them got started, and got in enough benedryl to give me a nice mid-morning snooze, but that one blew, too, before I finished my pre-meds. There are all kinds of reasons - I have small veins that have gone through a lot the past few months, some of the good spots are scarring from the harsh drugs, other spots are bruising, and they're just frail. After 4 pokes, my nurse calls the doctor and they recommend installing a port, which is a little plastic thing that is surgically implanted beneath my skin, below my collar bone with a line going almost all the way to my heart. There aren't too many options, I need to be able to have a reliable IV, and with my "hypercoagulative tendencies" (I clot easily), they don't want to try another PICC line.


A Portacath: The first ever picture on this blog that is not of me!
(But don't worry, I'll probably make you look at a picture of it protruding from my chest on Saturday)

I didn't get any chemo today, and I won't get any chemo all week, not even on Wednesday - so this is like Bonus Super Feel-Good Week, like Intermission exactly halfway through my 12 weeks. I'll probably do more Feel-Good things like go into work, maybe more hiking, and ckraphts! And then I have outpatient surgery on Friday to insert the port (performed by my favorite surgeon, Dr. Hank Hallum himself). Well, it's outpatient unless my lung accidentally gets punctured, which is a minuscule possibility, but I mention it because I've been beating the odds in so many ways lately. Fortunately that depends on my surgeon, whom I trust, rather than my body, which has been doing some unfortunate things.

Oh yeah, and I'm off my Coumadin and back onto self-injecting heparin-based blood thinners so that my blood can be the proper thickness (PTINR=1.0) when I get cut open. So then a week from today I start my 3rd cycle. This pushes everything back a week and means I won't be done by Halloween. It also means that, since I won't have an IV in my arm during chemo, I may be able to knit while the poison drips in. How could they forget to list this as a Port Access Advantage in the brochure??

Well, friends, there you have it: yet another plot twist in Margaret's Medical Drama. Not a huge one, and you must admit there was ample foreshadowing in the past 6 weeks, but I'm still astounded that this very straightforward chemo plan has experienced complication after complication after complication. Frankly, I figured my bad luck should have just about run out by now!

Looking ahead: there has been some Ckraphting going on in Margaret's Casita and I can promise pictures of a new headscarf, fresh from being pressed.

Saturday, September 19, 2009

The Perils of Feeling Good

The Event in the past few days was a lovely overnight at a friend's cabin in the mountains. For those of you not in Tucson, the Mountains are extremely important during summer (which lasts from March to November), in order to escape not only the concrete city bustle, but also the brutal heat. I spent the first 4 hours in the mountains napping in a hammock. That's right: four glorious hours of sleep in the afternoon, followed by a full ten-hour night. I guess I'd been falling behind on my rest, but in any case it felt amazing, and gave me lots of energy for taking walks in the pine trees by the streams.

Yesterday, it happened. I wouldn't say I forgot that I have cancer, nor that I have to go in for the dreaded 5-day chemo week next week. But between the refreshment of being up in the mountains, the excitement of having a friend in town, and the general busy-ness of the day spent feeling great, I did forget that I was supposed to go into the lab for a blood draw. I realized this at 5:15, 45 minutes after the lab closed on Friday afternoon. And this isn't just the blood draw to make sure my blood thinner levels are good, this is also the 3-vial draw to check my blood cell counts and my kidney functions that they need to ensure I'm healthy enough to be kicked in the bum again with the chemo.
So I worried about it a little bit, eventually found that I could go in on Saturday (today), and convinced myself that it would be okay. I felt guilty enough, but I went in this morning and got my blood drawn unceremoniously.

My sister comes in today, hopefully to take the edge off next week's treatment, or at least bring me 7Up when I need it and make sure I get to my blood draws in time.

Thursday, September 17, 2009

Happy Thursday

This week my friend and old college roommate Meghan is here. I am so pleased to see her, and even more pleased to feel good enough to do things, even after a Bonus Bleomycin Wednesday, which took 2 pokes and less than 2 hours. All my side effects have cleared up for now - even my BMs have been proper without pharmaceutical encouragement! - except my superficial thrombophlebitis (the little blood clot in my forearm), but even that is less swollen and tender than it was 3 days ago. Oh yeah, and I guess I'm still bald, but who cares?! So last night I went swimming for the first time since Grazelda took up residence, and today we're going up to the mountains for a little gentle hiking and a little just being in the cooler weather in the pine trees.

Here's what I can tell you: it feels really good to feel good.

Monday, September 14, 2009

September is Ovarian Cancer Awareness Month

I was wondering what I could do on my blog to observe this (besides shouting,
"HEY! I HAVE OVARIAN CANCER!!!"
in really large, bold, teal italics, of course). I hope that this blog is doing something to increase awareness, but I realize that I haven't provided a whole lot of general information about ovarian cancer in these tomes. It's a little bit complicated by the fact "my" type of ovarian cancer (malignant endodermal sinus tumor, which is a kind of germ cell tumor) is not very common amongst ovarian cancers, so the information I have given has been somewhat Grazelda-Specific.

Ultimately, this is what I would like every woman to know:
The 4 Primary Symptoms of Ovarian Cancer:
  • Bloating (gaining girth without gaining weight elsewhere)
  • Pelvic or Abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary urgency or frequency
I had all of the above (plus fever, cough, diarrhea. Yeah, it was miserable). If you have any of these for more than 2 weeks, don't freak out - it could be something else - but do talk to your doctor. Ovarian cancer is typically hard to diagnose because the symptoms are often so subtle and can also be indicative of other conditions such as irritable bowel syndrome (and pregnancy - you have no idea how many doctors thought I was pregnant!!), so knowing the symptoms and seeking help immediately is that much more important.

The Other Thing I Have To Say, Which Also Applies To Men
(not that the men should ignore the previous, since each of you cares for many women)
Two months ago to the day (unless you're on the west coast and so totally addicted to my blog that you're reading this mere minutes after I post, bless you) I woke up with severe abdominal pain. Before that, not only did I feel amazingly healthy, I was leading an unquestionably healthy lifestyle: I ate the right stuff, I got my exercise, I've never smoked, I drink alcohol in moderation, I even gave up coffee after one bad caffeine trip last year. There is not a lot of cancer in my family. I was 24 years old. And then, bam, I got cancer. That is to say, you could get cancer. Just for a minute, let go of the list of lifestyle choices you've been making to minimize your risk factors (because I did all that and more), and let that thought sink in. There's your existential pondering for the day.

Now, make sure you have health insurance, and keep doing what you can to prevent it!

If you want more information, www.ovariancancerawareness.org is very accessible and well-organized, while www.ovarian.org goes a little more in depth.

P.S. Said simply, I feel great today.

Sunday, September 13, 2009

My Big Bad Bald Self

Today in the shower, maybe even while I was washing my scalp (ironically with Wonder Waves shampoo), I had the following thought:
"How am I going to do my hair today?"
And then I remembered that right now, that is not a concern of mine. So I threw on my rainbow-tie-dyed-with-sparkles scarf and went out.

No, I haven't gone out in public without a headcovering yet, but why would I when I have so many great scarf options?! However, it is becoming more and more probable that I really may forget one day, and I don't think it would be so bad. I have been increasingly happy and comfortable as a mostly-bald woman. I happen to think I have a nice-looking head. Which is fortunate, as I suffer from an inability to not look at myself in the mirror (narcissism exposed!).

I haven't lost my eyebrows or eyelashes, and I still have a little bit of hair by my sideburns, which is what makes a woman look really bald, even with a hat on. In fact, they sell little self-adhesive sideburns for wearing under hats or scarves.

Anyways, here I am:


And just for comparison . . .

(This picture is really for my Dad's brothers, proving my status as Baldest Member of the Penner Family)

Saturday, September 12, 2009

Superficial Thrombophlebitis

. . . looks like this:


That thing that is circled in blue ink pen on my forearm is a blood clot (thrombosis) that either migrated or grew backwards from my PICC line clot. When you have a blood clot, it just sits there in your veins (that's the -phleb- part). Blocking blood flow can cause pain and swelling, and it can even get inflamed (-itis).

For the past few weeks I've had this spot on my arm where I can feel a very well-defined vein. My doctor said that it was a blood clot and nothing to worry about. I'm already on drugs to take take care of my Hypercoagulating tendencies, and my arm is a great (=relatively safe) place for a clot to hang out. But yesterday I woke up and it was worse. It hurt (a little) to straighten my arm. It was (a little) redder, and (a little) visibly swollen. So after some re-arranging of schedules to get my Dad to the airport and me to the doctor's simultaneously (Thank you Scott and Jeanne!!) I had the quickest doctor visit yet: He drew the dotted line around it and told me to call if it got a lot bigger or redder or more swollen, and I'd go on antibiotics just to make sure it doesn't get infected.

In the middle of his explanation, to make sure I was following him, Dr. Hallum asked me to recall why I was prone to blood clots, "Because I have cancer!" was my prompt, and correct, answer. It felt a little bit like I was in Sunday School or children's story, where "Jesus!" is always the right answer, or at least is never wrong: All these random side effects and symptoms are because of cancer or chemo (which is because of cancer). Otherwise, underneath all of that, I'm healthy!

And probably going contra dancing tonight!

Thursday, September 10, 2009

Cutting My Toenails

So. I haven't written in two days. Not that I haven't been virtually prowling around this place. I must confess to a sort of narcissistic attachment to my own writing, but I usually confine my obsessive re-reading to my journal. There just hasn't been too much excitement to report. I mean, my stomach was a little upset yesterday, but I did feed it an In-N-Out burger, fries, and a shake for lunch after chemo. So here's a list of all the Normal People Kinds of Things I've been doing the past couple days. Because when you Have Cancer, people seem to get excited when you do Normal People Kinds of Things.

Went to the grocery store
Made a smoothie (as in, I made it myself, not had someone make it for me)
Went to work
Spent a bunch of time fawning over my new iPod
Talked to a few friends I haven't seen in a while on the phone
Cut my toenails
Went out to lunch with my Dad
Dried the dishes
Worked on my finances
Folded an origami elephant

While this makes for a pretty mundane post, it points to a much happier circumstance, which is that my body is feeling well enough to allow me to concentrate on other things. Like cutting my toenails.

Cheers!

Tuesday, September 8, 2009

wups

Today I'm feeling pretty good. Yesterday I felt pretty good. I could complain (and I still might complain) about how chemo has turned my hitherto iron-clad digestive system into a needy, sensitive, and irritable part of me. But that's mostly all that feels wrong.

Today's medical news is that my PTINR=1.0 Essentially that means that my blood is too thick now, pointing to Friday's reading of "ridiculously too thin" being false, probably due to it being drawn through my IV. Wups. So I'm back up on my Coumadin doses and will test again on Friday.

As expected, my doctor called me today to give me this news, and it made me think again, as I have several times in the past week, how much I really like my doctors. One would imagine that after a person performs major surgery on you, hands you a cancer diagnosis, and a 3-month chemo regimen to get through (all in the first week of knowing him), that you'd have some negative associations with this person, at least a little bit of dread or fear of seeing them. But I find it's basically opposite. Between excellent communication, being very available, competent, optimistic, friendly, and compassionate, when my doctor walks into the room I smile and usually feel just a little bit better. I don't know that I could ask for better people to steer me through this than Dr. Hank Hallum and Dr. Jennifer Hallum. And my nurses Shirley and Kerry are the same: The good part about the 5-day weeks is that I get to see them for a few hours every day. If you ever have gynecological cancer in Tucson, these are the folks to look up.

Tomorrow is Bonus Bleomycin Wednesday! I'm hoping for a good IV and no nausea.

Sunday, September 6, 2009

Happy Birthday To Me!

Remember when you turned, oh, say 5 years old, and your birthday felt like the absolute biggest thing that happened that century? You probably had a party with your little friends in dress-up clothes and cupcakes with candles. Party games. Lots of presents. And a birthday card from just about everyone you knew?
Well, I don't think anyone dressed up, and I didn't have a party per se, but I turned 25 today with about as much good cheer, well wishes, and simple astonished wonder at how very very much I'm loved as I had when I turned 5. (and yes, there was a cupcake with candle)

The day started off with the usual sleeping in followed by Egg and Toast (Margaret's new absolutely favorite breakfast) and resting in between bouts of feeling mediocre. All this changed in the afternoon when my parents returned from picking up my mail at my apartment. I'd picked it up on Wednesday, so despite my roommate's warnings I wasn't expecting the armload they poured on me.
It was almost too much - like I wasn't sure I should be allowed to open it all at one time, but since it was my birthday, I just sat down and had myself a party opening card after card after card and even a few packages. It was so very wonderful to read your words and think of each person and how special each is to me. Cancer sucks, and chemo is pretty nasty, too. There's no changing that. But I am unspeakably grateful to be told in such a concrete way and know, for sure, that I'm not alone and that I am very, very, very loved. Thank you. Now, before I slip into cliches or weeping, I'll leave you with a picture.



Me, warming up and checking my email in my Cow Blanket and my Big Bald Head after a Birthday Smoothie.

Saturday, September 5, 2009

Brought to You By The Letter K

Today I am very tired, my throat hurts, my body aches, and while I know I need to drink lots of fluids, finding fluids that don't taste gross is becoming a challenge.

Here's the good news: no nausea.

Here's the bleary health update from Grazelda-Ville (which might be too medical for some tastes. Feel free to ignore!):

Yesterday I went in for therapy feeling "punk-ish," as is to be expected on day 5. My rapid weight-gain had led me to have some weirdness by breathing. There's no problem with fluid around my lungs or anything; I guess when your body changes shape so quickly things just shift a little. But the kind folks at chemo really do their best to make life as comfortable as possible (and while it's hard to not feel sarcastic typing this, sitting here feeling awful, it really is true that they are very kind and do everything in their power to make the yuck bearable), and as the breathing thing was hurting a little when I lay down, they gave me some extra diuretics in my IV and sent me home with a prescription for more, and advice to bump up my nutritional potassium intake as much as I could. Well, I shed enough weight (and bulk - I can see my wrists, ankles, etc.) overnight to make me comfy enough without the extra help loosing fluids, but I'm still cranking up the potassium and the fluids to give my kidneys a break.

Meanwhile, yesterday, in the midst of investigating my breathing, since I still have those 7 or so blood clots hanging out in my lungs, they ran a test to check my blood thin-ness and it came back not just slightly too thin, but way out in ridiculously too thin land (PTINR=4.1 if that means anything to you). So, I'm off of my blood thinner for a couple days, have stopped shaving my legs (ha!), and go back for labs on Tuesday. And what this means for my Vitamin K intake? Well, all sources say the important thing is to stay consistent, so I'm still laying low on the green & leafy.

Thursday, September 3, 2009

train wreck

I got an email from my boss today that reminded me of one of my less-obvious rights to frustration, which I will now proceed to complain about publicly. Now, largely because of company history, because Community Home Repair was started by and still has a strong volunteer force of retired church folks in Tucson for the winter, we only work 4 days a week. Yes, for the past three years of my life, I have been luxuriating in the most wonderful equation that Thursday=Friday. Well, this is not so in chemo-land. My "bad" weeks are literally Monday through Friday, a full five days of sitting in the chair, waiting for my fluids, my VP-16, my Cisplatin (and on Bonus Bleomycin days, that too) to drip into my arm and poison my cells, coming home to a nap, and whatever else I can eek out of my dwindling energy levels. In other words, I feel awful today, Thursday, and I have to go back for more tomorrow, even though it really feels like time for the weekend. ugh.

And yes, Allison, even those with head hair are welcome to wear Wise Womyn T-Shirt Turbans (and any other headwraps). I'll show you how to make one when you come.

Wednesday, September 2, 2009

There Were Shepherds, Abiding in the Fields

So, here's an American Cancer Society-recommended easy turban made from the bottom portion of a T-shirt (thanks, Jen!). Mom and I are trying to figure out whether it looks more like a shepherd or a wiseman. Thoughts?



I haven't been feeling too peachy today, suffering from some stubborn stools, if you'd really like to know. Since everything's connected, that brings on some low-level nausea, and with all the fluids I'm once again +10 pounds since Monday (when else can a woman just proclaim that with no shame whatsoever attached?!). I did get in a really quality Post-Chemo nap. My new sleep-inducing trick: Lake Wobegon podcasts. Also, Mom got me a blender today, so hopefully delicious milkshakes are soon to follow. And supper by friends is so so lovely, as it was again today. Thanks to all involved in that endeavor.

Two more days of chemo this week - and keep sending those positive vibes for this great IV to hold!

Tuesday, September 1, 2009

Therapy 2.2


Well, I woke up from my Post-Chemo Nap to my Blood-Thinner Alarm, and I'm still tired. Today was a busy day in the chemo room, my regular seats were taken, and I ended up for most of the time between two older women, one of whom I'd seen several times before. Liz was her name, and she comes in fairly frequently just for IV hydration. We had a long-ish conversation about international travels and how nice it is to get cards when you have cancer. The woman on my other side was on her first day of chemo who also had ovarian cancer (of a different sort) and she had some questions about loosing her eyelashes (mine seem to be firmly rooted, along with my eyebrows) and just general stuff. It was kind of crazy to feel like an "experienced" person, but I guess once your hair falls out, people assume you know something about life.

Speaking of hair loss, my big breakthrough this weekend was figuring out how to fold bandanna-sized scarves to that they cover my whole big bald head. This essentially triples my head-covering options, allowing me to wear great funky scarves such as the above (Thanks, Stacey!!), which went over well in the chemo room. And maybe someday I'll post a picture of something besides me . . .

Today's health report is that my IV worked well, and they left it in another day, so here's hoping it works tomorrow again, too. I also found out that the steroids I'm on make it hard to go to sleep, which explains my late-to-bed experiences of late. Fortunately I've still been able to get ample sleep, and have my indigestion almost entirely controlled.