Therapy 2.1

Today was the first day of Round 2, starting with 5 days straight of chemo. In other words, "the hard week." Monday's chemo is done. 2 pokes today - the first IV had a weird problem and gave me pain. Because my veins are so small, and not very accessible and only usable in my right arm (so as not to disturb my clotted left), my nurse Shirley left the second one in and is hoping to use it again tomorrow. This also means I have one of those stylish fishnets on my elbow tonight, which I think goes with my super-cute (what Allison calls my "street urchin") hat. I got to put another sticker on the front of my binder (my visual count of chemo sessions), and got to open another present from my Happy Basket. And when I got home all I wanted to do was take a nap. It's still amazing to me that I can sit in a chair all day (it was a 9-3 kinda day again), doing almost nothing, and come home feeling so wiped out - although today was not a hit-by-a-freight-train feeling, more like hit-by-a-compact-car. I would so much rather be exhausted from climbing ladders in the Tucson summer.

So, tonight's hope is for a good sleep and that my IV is usable tomorrow.

Gone Dancing, or Social Side Effects of Cancer Part II

I did it: Yesterday evening, despite some pain near my incision, I went out to the local contra dance (if you don't know what a contra dance is, follow the link, watch the video, and then go find one near where you live to try it out). As my hair is now all between 0" and 1/8" short, depending on the patch, I wore a headscarf, and along with the Best Contra Dancing Dress Ever, I didn't totally have the "cancer patient look." I arrived late, left early, and sat one out, but I did dance.

Now, I've been contra dancing in Tucson enough over the past three years that the regulars know me. They've noticed I've been gone several months (the first of those several months had nothing at all to do with Grazelda), but this is a group I don't have much email correspondence or other contact with. So there they were - a bunch of people who know who I am and mostly haven't heard I have cancer. To add to the awkwardness, my encounters with each were mostly limited to the 8-16 counts of a swing or an alamand right. And when you have less than 20 seconds to chat, the proper response to "Good to see you! How have you been?" is definitely not, "I got cancer. How are you?" Needless to say, I lied a lot, or at least made a lot of gross understatements.

Why did I avoid telling people? Yes, partly because there just wasn't time during dances, but there were times in between when it could have been appropriate. Partly I didn't want to draw attention to myself because these people were gathered and hanging out with me (and each other), not because I have needs, but because we all wanted to dance. In fact, they wanted to dance with me, not because of the crummy things my body is going through right now, but because of one of the things my body does best: dancing.
I also didn't tell people to avoid putting them in an awkward situation. If I came out to them as a person with cancer, currently going through chemo, they'd have to feel sorry for me and express sympathy and wonder more about my hair and worry about my energy levels and be delicate with me on the dance floor. Ugh.

There was one man, though, as we were waiting for the dance to start who looked at my head scarf and asked point blank, "Is that a fashion statement or chemo?"
[Now, before you suffer outrage at this question, you should know that this man is also my standing waltz partner, the one person I usually spend the 3-5 minutes of the first waltz at each dance with. I know a little more about his life and he a little more about mine than your average "trail buddy," and he's familiar enough that his tendency for, um, straightforwardness does not surprise me.]
Back to the story. I wish I would have responded boldly, "I don't do fashion statements." But I didn't. I was grateful for the question, maybe a little shaken that my condition was so obvious, when here I'd thought I was blending in so well, and I told the truth straight up. He said he was sorry and asked about my prognosis and how long I'd be in chemo. Then it was time to dance. And it wasn't awkward.

In any case, it was good to be out, good to be dancing, and now I'm dealing with the possibility of sore muscles from that adventure. I'll take sore muscles over nausea, fatigue, and bone pain any day!

The Hours In Between

Today I took my sister, who has been staying with me for the past week, to the airport. I will miss her, but she is coming back in a few weeks. Now, I really don't want to give the wrong impression here, so let me say this first and say it loudly: I am tremendously grateful for family and friends so committed to being here in Tucson with me and for them to be able to do so. That time I woke up in the middle of the night almost fainting makes me somewhat afraid to spend the night on my own, and who wouldn't want someone to cook and clean and most importantly just be with while I have all manner of crap going on in my body and the corresponding thoughts running through my head?! I also consider myself amazingly fortunate to have family with whom I love hanging out, a lot, for a very long time. None of this post is about being tired of being around the people who have been here.
But, today after I dropped my sister off at the airport, I had about three hours before a friend who was driving in from Kansas arrived. Three hours in which I was alone and no one else knew or was thinking about where I was. For a free-spirited twenty-something like myself, this is a normal state, and it's not normal for me anymore. I guess this is just one of those Social Side Effects of Cancer.

"So, Margaret," you ask, "what did you do with your hours alone?"
And I'm not going to tell you!

I'm feeling pretty good today, maybe a little tired. I have this dream of going contra dancing tomorrow night. I'll let you know if that goes. And my mom comes back tomorrow!!

Thursday

Today I am grateful for:

*going all yesterday evening and last night without any stomach problems
*being able to work 3 days this week
*possibly the best pizza my sister ever made
*naps
*Skype

I'm getting tired of shedding, though getting more disciplined about not pulling it out by handfuls. Tomorrow morning I think I'll get out the clippers. Honestly, I'm not sure that I have the guts to promise a picture of bald Margaret. We shall see.

Cocktails, Caps, and Blood Counts

Today at chemo, Shirley mixed my anti-nausea cocktail better than they did in the hospital, and I took my Ativan when I got home - hey did you know that Michael Jackson was on Ativan too?! it's not what made him die, but it was one of many things he was on - so after a brief rest, I felt well enough to go run some errands.

I've been meaning to go to the American Cancer Society for some time because I'd heard they have a resource room of wigs, hats, and scarves. While my collection is nearing the versatility I desire, I wanted to see what was available and any advice they had. (Like is there a way to get all your hair to fall out at once so it doesn't go all patchy? As the Hungarians would say, sajnos nem). Today we stopped in, and it's still surreal for me to go into a place like that to receive services. I've been living with this diagnosis almost a month now and "the C-word" still hasn't sunk in, as it applies to me. Going often to therapy and sitting in a row of people with IVs in various stages of baldness helps me to feel like I'm part of an "us" rather than talking about a "them," but Cancer Survivor still hasn't entirely integrated into my identity. The people at ACS were really very kind, wanting to see if there were other services they could offer, and they found me a couple hats and another scarf that may even surpass the cuteness of the ones in the previous post. I think I'll wait to post pics, but just know that you don't have to worry about me being bald and cold and un-cute.

That is to say, not only am I feeling well tonight, I'm also feeling a little bit hip. AND I got my blood work back from Monday and my AFP count (which we want to be low . . . like 6. before surgery it was 6620, before round 1 of chemo it was 1786) was 301. Score 1485 points against Grazelda!

Headcoverings

A few days ago I noticed that I could pull out the little hairs on my legs painlessly. Just today it got really easy to do this to my head:


I guess it's just a matter of days till it's all gone and I have to deal with being bald. I thought about going with a wig, and even tried some on . . .




But really, if you know me well, you know I've had a "thing" for headcoverings for a long time, so I think that headscarves and hats will serve me well enough. I've been collecting and currently have an entire drawer devoted to scarves of various sizes and fabrics. Here are some favorites:

This one is from a fellow (less closeted) headcovering enthusiast at church.

One of my Mom's silk scarves from China.

My aunt made this one (and I have a dress to match!). It also models my current favorite way to tie a scarf, but it takes a 36" square piece of cloth.

This is my only hat, knit just for me by a guy in my sewing circle. His daughters picked out the fabulously (and soft) pink yarn, and I look forward to wearing this when I don't feel like having a bun at the back of my neck.

Tomorrow is Bonus Bleomycin Wednesday, so I'm hoping for a good IV, and the right kind of drugs to keep the nausea beast at bay.

How Margaret Got a Prayer Shawl

The Mennonite community I'm part of here in Tucson is Shalom Mennonite Fellowship. It's a small, vibrant, spunky group that does a lot of good work and has a lot of fun together, too, often times on Sunday mornings. Shalom of Tucson has a sister church, Teusaquillo, in Bogota, Columbia, with whom we exchange visits at least yearly and stay in communication through the relationships that have developed. When I first started attending Shalom I was impressed with the importance placed on this international relationship between churches, something I'd only read about in theory. We light a candle for our sisters and brothers in Bogota every Sunday, and every Sunday they light one for us.

While I haven't been to Columbia myself, a couple years ago a woman from Teusaquillo named Adaia volunteered a day with Community Home Repair during her visit to Tucson, and was sent out with me. We fumbled through the language barrier to do some electrical jobs together, but I hadn't been in touch with her since. This summer, a family from Shalom was in Bogota visiting when I discovered Grazelda, and they shared the news with the friends that had gathered with for supper. Adaia was among these, and immediately offered to pray for me at the monthly healing service that was to be held that week.

So it came about that yesterday, feeling well enough to go to church, I was anointed with oil and presented with a prayer shawl, originally belonging to Adaia, that had been prayed over by the fifty-some people at the healing service in Bogota as well as the people at Shalom.

While Shalom is unaccustomed to anointings (or maybe it's just me - I had to be told explicitly, "Sit on the box!"), the healing ministry is what comes naturally to our sister church. And regardless of your thoughts and experiences of the "God Paradigm" (thanks, Myron), it is a powerful thing to be so cared for by an entire community I've never met, except one day of electrical work. I am awed and grateful to be connected to so many people, from whom I'm usually separated by geography, culture, and language. And we are all hoping for healing.

Oh yeah, and I'm feeling so good today I went to work. No carrying shingles up the ladder, but I drove myself around and sat in the office working on writing grants. Week three (in the chemo cycle) is a good week.

Moving Me (not my blood clots)

Moving Days
I mentioned earlier that moving was also on my plate for this week. It has happened. In fact, it's the bulk of what's happened in the past few days. Being sick humbles you in a lot of ways - going to the store in slow-walking-often-resting-using-the-cart-for-support mode, being dependent on having someone stay with you most of the time, and now having all of my earthly possessions gone through, packed, moved, and unpacked by others while I literally sit in an easy chair. My initial plan was to move to a duplex I'd leased with a relatively new friend, but found myself led to accept an offer to stay this first while in a casita belonging to a family from church. Thus, the past two days have found me watching other people first move all of my stuff to the duplex, where the furniture and furnishings would stay, then go through and re-pack the things to come with me to the casita, move them, and unpack them into place. I feel like this blog space could easily become a long long list of people I'm grateful for (which would include everyone reading this), but today a special thank you to Matt, Scott, Alene, Jeanne, and Mary Beth for all of their sweat and wisdom, and to Erik, Leanne, Josh, and Allyson for the willing loan of their beautiful casita.

The Report from the Health Department
I remember having a thought, probably Monday of this past week (before I ended up at the hospital), that went something like this: "Man, I guess this blog will get kind of dull just describing my health . . . tired, nauseated, tired, nauseated, feeling better, lather rinse repeat. I guess I'll have to start coming up with Deep Reflections On Having Cancer to keep people entertained." I wish that were the case (though if I'm struck with any Deep Reflections, I promise to share). Here's the report on Margaret's bodily functions:

Thursday I felt well all day. I didn't even nap. Right after supper, I started getting this weird pain in my side, on the left, towards the back, like by my rib cage. Like muscle spasms almost, that was sort of correlated with my breathing. It started as discomfort, but grew to around a 6 on the 0-being-no-pain-10-being-the-worst-pain scale. Not only did it hurt really bad, but it was kind of by my lungs, you know, the ones with the pulmonary embolisms. I was worried, so I called my oncologist and, while waiting for him to call me back (it being after hours), almost decided to leave for the ER anyway. But the doctor was totally confident it wasn't dangerous. "You're on chemotherapy," he said, "You're going to be uncomfortable," and told me to take drugs. So I did, and after a while my pain grew less, and by laying in a certain position I could eventually almost make it go away. It still hasn't entirely, and there's only one way for me to lay down, but I'm no longer worried about it.

Sleeping at night has also gotten to be a problem, as night seems to be when my nausea comes on more forcefully. Thursday I woke up a number of times to go to the bathroom and take various meds to soothe my stomach, but last night I slept really poorly, with a severely distressed tummy that did not seem responsive to the usual drugs. I was able to nap some this morning, and have been feeling fairly well today, a low-level nausea that allows me to be hungry and to eat.

As always, here's hoping.

Back Issue 1: From Thursday Morning

I’m out of the hospital. After a great morning in the hospital yesterday, felt perky and energetic, even while getting my bleomycin (chemo drug) and the most delicious hospital meal I’ve had – a turkey-bacon wrap – my stomach started to feel bad. I guess I’m still learning what it means for me to feel nauseated because that is not how I would have described the feeling, and yet, a few minutes later, up came lunch! So I was really miserable for a few hours – they gave me some more drugs that didn’t help, and some that did, and eventually decided I was fit to go home. I’m still getting blood drawn almost every day so we can get it to a point of being thin enough from the Coumadin, the oral blood thinner I take.

That is something to look forward to because for now I get an injection of a substance called Lovenox twice a day. “LOW-vuh-nocks” is how it’s pronounced, so it made me laugh when I finally saw it written down (on my takehome Lovenox Box) because to me it looks like “Love Knocks,” some highly ethical dating service. Do not be fooled. It’s an injection, a shot I have to give myself in the stomach twice a day, and it hurts, even for a while after it's over.
Okay, so actually I feel a little bit powerful to be able to do that – and even to adjust my own dosage, but it still takes a substantial amount of courage each time to plunge the needle into my own flesh.

Being in crisis mode, which I guess I qualify under right now, has some other difficulties that come along with it.

My dear dear friend and housemate Jodi moved to Canada today. Well, it will take her a few days to arrive, but she left from our house in Calle Herculo this morning. There are other shocking things involved with this process, such as coming home from the hospital to all my belongings and wall hangings and clothing, neatly packed by some helpful friends and stacked on the back porch. Jodi’s stuff was all packed into her car, giving the house a much more hollow look. I knew this was happening, but a suddenly naked room is always startle.

And it’s at times like these that I wish I could just stop having cancer for a day, or totally switch it off for just a few hours, and spend a last few moments as just housemates, friends thinking back over our years of adventures and revelations and projects together. Last night I was feeling well enough that this could happen in spurts. But the default channels in my mind concern either my bodily functions or hospital staff and it’s hard to feel like a normal person with normal things to talk about that come easily.

I suspect that as my treatment continues I will have more and more occasions to feel these ways. But today I’m looking forward to my longest break so far – 6 days without any chemo drugs – and my sister coming tomorrow, the possibility of a quilting project, getting started in a new house, and the prospect of having some energy for that.

back online

Hi. I'm back. It's felt like a very long time since I posted last, especially since so much has happened. I don't mean to cause concern. Besides being busy, I haven't had internet for the past 48 hours, but now I'm mostly settled into a new place, not the hospital, with internet (more explanation to come). I've been writing all along, and I will post these as sort of back issues, and hopefully sometime tomorrow I'll catch up to the present. But for now, I'm mostly well and very happy about the following things:

my sister arriving in Tucson as I type this.
a delicious dinner brought by friends.
being settled into a (gorgeous) casita of tremendously gracious friends.
having been successfully moved by hard-working friends, twice in the past two days.
my blood reaching its thinness goal this afternoon, so I don't get a shot in the stomach tonight.

Moving on . . . (unfortunately)

Well, the good news is . . . they have wireless in the hospital. The bad news is that I'm using it, which means that yes, I am in sitting in a stylish hospital gown, writing this update to you. It's been a bit of a road getting here.

This morning at 3 am I woke up sort of. I managed to sit up but felt really, really, really off. Very weak. Lightheaded maybe? I called for help and my roommate Jodi woke up and came in and sat with me, turned on the light, woke up my dad. I couldn't see anything (they said my eyes were wide open), and don't really remember until I started to come to. My vision was all funky, my ears were ringing. It was pretty much superscary for everyone involved. And so we set off for the ER. (By the way, 3am is the absolute best weather Tucson has to offer in August).

They checked me in and checked me out all over - my blood pressure was really low, my pulse was weird. They did an EKG (I still have the sticky tabs on my legs), put me on some fluid IV for hydration. They did a CAT scan of my head to make sure I was alright in the head, and one of my abdomen and pelvis (both okay) and one of my chest. There it was. I have a Pulmonary Embolism, a blood clot in my lung. So, yesterday's blood clot moved on out of my arm and stuck in my lung. I think I heard I have 4 in one side and 3 in the other, but that could be something totally different.

So the present time has me in a hospital bed in a cardiac unit, much to the surprise of the nurses, who are not used to having 24-year-olds in their wing. My nurse was so pleased that I could "do things for myself," when I pushed my own "backrest up" button on my bed, so I could sit up. I'm also hooked up to a heart monitor with various sticky snaps on my torso. To this end I even get a special pocket on my hospital gown, and when I'm laying down, my heart monitor lies nestled in my bosom, just where Grazelda the Good used to sleep. I haven't named my friend the heart monitor yet, but am sorely tempted.

I'm feeling fairly well, and my oncologist stopped by a little earlier with a very optimistic perspective - very little chance of dying, this could almost surely have been managed outpatient, let's do the Bleomycin (chemo drug I was supposed to get today) while you're here with an IV anyway.

And at this hospital, the slipper socks have smiley faces on them!

Rejected

Warning: this post may contain a sarcastic edge. But I have cancer, so I have those privileges, right?

Today was kind of a rough day medically speaking. I woke up, after a restless night, with what I think was ultimately just really really awful heartburn. My PICC line had been swelling and tender all weekend, which it was supposed to stop being around Friday, so we called into the office and the nurse set up for me to have a sonogram this afternoon to check it out. This was to be at the same place I had my CAT scan a few weeks ago, and sure enough, when I'm at my tired-est, down-est, least present-able, I get the same overly perky receptionist from last time. This is the woman who had assured me that the gag-inducing Barium was "not that bad" and that "it wasn't the contrast that made me have 20-trips-to-the-toilet-diarrhea; it was my body's reaction to the contrast." Today she wanted to know if I'd done anything fun lately. I held my tongue instead of saying, "Yes, why, just last time I was here I got diagnosed with ovarian cancer, had major surgery, and started chemotherapy. It's been a real hoot!" This is the only medical professional I've encountered whom I don't find at least pleasant - it's a good track record, but irritating to have to deal with her again.

Fortunately my tech was pleasant and sympathetic, and I got very close to falling asleep on the sonogram table (why do they dim the lights?). Unfortunately, they found I had a blood clot and sent me straight to my doctor's office to have the PICC line taken out - like a long train of spaghetti coming out of my arm - and put me on blood thinner, with a bugs bunny band-aid to boot. Unfortunately, this means I'm going to be on blood thinner for a while and now have to stop (or at least really moderate) my Vitamin K intake. Vitamin K is in things like, oh . . .

brussel sprouts, kale, green tea, asparagus, avocado, broccoli, cabbage, cauliflower, collard greens, liver, soybeans, certain beans, mustard greens, peas (black eyed, split, chick), turnip greens, parsley, green onions, spinach, and lettuce

. . . just those green leafy vegetables and everything that I usually eat. Huzzah for Coumadin!
Unfortunately (yes, this is sentence #3 beginning with that word), I will also have to have a lot more blood work done to regulate it. And, to get the chemo into my system, unfortunately (#4), for now it's back to poking me every day to start a new IV.

I had a long nap this afternoon and a pleasant evening - some friends brought over supper, somewhat miraculously free of Vitamin K - and now I need to go to bed so I can go in tomorrow. Happy Monday to all, I suppose.

In Praise of the Toast Train

All things considered, I suppose one could call my weekend alright. (Sorry for not posting - it's a busy life having cancer AND being a blogger!) There were some Everyday Things that now startlingly count as Major Achievements for people as suddenly sick as myself, like going on a short shopping trip with my mother, and attending two larger gatherings of folks. Those really did brighten my weekend and give me something else to think about/do besides myself, but first I would like to highlight a couple Very Small Things that vastly improved my quality of life this weekend:

Very Small Thing #1: Crest Mouthwash, Alcohol-Free
Part of my new-found responsibilities include being exceedingly clean, to prevent infection while my white blood cell counts are down. This is hard for me. I'm having to get over my severe dislike for everything overly anti-bacterial. But when you're in the business of specialized cell poisoning, there isn't much choice. Especially vulnerable, I'm told, is my mouth and so I was given an oral hygiene regimen. Brush four times a day and then rinse with baking soda solution and then rinse with salt water solution. I thought this was great - I could mix up my own solutions in my little pint jars and swish when I was done. Nothing makes Margaret quite as happy as little pint jars, and I wouldn't even have to gargle! That worked for a few days, until the taste of salt water lingering was enough to make me need to spit several times afterwards and the thought of baking soda rinse, flavorless as it was, was enough to put a bad taste in my mouth and ruin any thought of food. Thus I am now a total fan and endorser of Crest Alcohol-Free Mouthwash because it puts me in a gag-free, pleasant taste space.

Very Small Thing #2: The Toast Train
Nausea is a big deal when you're in this sort of therapy. Everyone asks about it, they drug you before, during, and after to prevent it, and send you home with pills you can take 4 (literally!) different ways to suppress it. One hint I read in one of my cancer books was to prevent nausea first thing in the morning was to eat toast before getting up. This fits right into my routine, as my love of lightly buttered toast for breakfast is long, deep, and thorough. So yesterday morning, when I woke feeling a little bit "off" (this is becoming a constant state), I suggested that Mom bring me some toast in bed. Not only did she comply, but even cut the toast into the cutest little 2-bite-size pieces arranged around the plate, like her father used to do before meals. It's called a "train," and makes even the best of toast (and this was really good toast, thanks to some stellar bread by Kyle) that much better.

nauseated

It's been another pretty hard day here - the not-so-gruesome gruesome details are that I woke up very early this morning feeling nauseated, and just having had a dream that my Mom had just spoken to the doctor and informed me that I should not take my anti-nausea meds, as it would interfere with my treatment this morning. This happened twice before I/my (real) mother convinced myself otherwise and I swallowed my pill.

Things were sleepy in all ways in the Therapy room today. Contrary to my dreams, they are (as always) very supportive of patients controlling nausea and other bad side effects before they start. I was told in no uncertain terms that I do not have an S on my chest and therefore should not act like Superwoman. I think I feel pretty far from Superwoman today. The official count has my weight up 13 pounds since Monday. It's all fluid and none that I'm worried about, but I feel like some bizarre inverse google ad: Gain 13 pounds in 4 days! My joints feel and look sort of like this, which is uncomfortable.

I'm really, really tired, and prone to random acts of sobbing, which is only to be expected, but irritating nonetheless.

Tomorrow, for the first time in a week, I won't go in for chemo (although I probably get to start Bonus Bleomyocin Tuesdays, even on my off weeks). Word is that the few days right after are just as difficult if not worse. And I won't be under the watchful eyes of Nurse Shirley and the very kind Dr.s Hallum.

And there are some bits of everyday life I have to make sure get taken care of . . . moving? buying a car? Fortunately there are lots of key people who make these things possible, so I can focus on the hard stuff, like breathing and sleeping.

A poem given to me by my friend Kristi, that feels far too apropos today.

Standing is Stupid
-Shel Silverstein

Standing is stupid,
Crawling's a curse,
Skipping is silly,
Walking is worse.
Hopping is hopeless,
Jumping a chore,
Sitting is senseless,
Leaning's a bore.
Running's ridiculous.
Jogging's insane--
Guess I'll go upstairs and
Lie down again.

ugh

Well, I don't hurt. I'm not even sure I would describe my body as feeling nauseated. I just basically feel like shit - like so tired that the thought of doing anything, like even just calling people is a little overwhelming. This sucks. And I have to go do it again tomorrow.

See, I told you these wouldn't always be cheerful.

Love,
margaret

Hair and More (or Less)

Here's the only picture of me in the hospital that survived. By this point I had my Oxygen out, and maybe even my IV out, so I was thoroughly less pathetic than I had been. The doll on my chest was Grazelda the Good.

I'm going to loose my hair in the next 2 weeks. Even for a woman such as me who tries to be as unattached to /undefined by/unconstrained by her hair as possible, going completely bald is not something I'm looking forward to. This is especially frustrating to me, as I've been growing it out since Christmas, and only in the past 2 months broke down and bought a brush. But I also think it would be worse to start loosing large handfulls of hair. So, before my hairdresser, Kristi, left on vacation, I had her take me down to 1/2." Here are the pictures:

This is possibly the only time Margaret will ever have a mullet - and it lasted mere seconds.

And here she is, Margaret the Super-Cute (and Unfortunately Sideways):

This is today's new gadget that will hang out of my arm for the next 3 months. It's called a PICC line and is a catheter that goes straight into my vein and almost all the way to my heart. Wild, eh? It's a little tender right now, but it means that I don't have to get stuck with a needle anymore. They can hook me up for chemo, and even draw blood through it: no more pokes! Plus, I get to wear that excellent fish-net-looking sock contraption to keep everything from flopping around.

Today was probably the roughest day yet. I had a little bit of nausea while I was at therapy, so after ginger didn't quite cut it, they put me on another anti-nausea drug, which wiped me out again (I'd already had my Benadryl Drip Trip), and I took another much-needed nap when I got home.

As to the pudgy sausage fingers . . . according to the scale at the doctor office, I've gained 10 pounds in 3 days. And I'm pretty sure it's all fluid retention, which the doc assures me is actually good, helps my kidneys avoid stress, and flush out the chemo as it needs to go. In fact, if I keep doing well, I may end up going in every Monday (even on my off weeks) to get more of the one kind of drug.

But I managed to eat a substantial and delicious supper brought by friends from church and have not had any more nausea at home.

Tomorrow my Dad flies in. It will sure be good to see him.

That's the news from Grazelda-Land, where short short hair is in, big big tumors are out, and naps are the way of the future.

Pudgy Sausage Fingers

Today was Therapy Day 2. It went much faster than yesterday, as I'd kept my IV in tact overnight and Shirley could run the drips faster, it not being my first day. I still opted for a PICC line to avoid so many pokes, so tomorrow I go first thing very early to the hospital to get that inserted before going in for treatment.

Today I walked into the office much more confidently. I sat down right next to someone, a nice elderly woman named Helen. We didn't talk too much, but it is nice to be sitting next to someone friendly. An hour or so into my drips, a young man walked in, looking to be about my age and sat down in the chair on my other side. His name was Joe, and we exchanged basic pleasantries and book titles - he was reading A Picture of Dorian Gray, which he absolutely loved and I wished that I was on my high literature kick instead of the lighter fare I'd brought for the lack of focus I experience in that room. But soon enough our respective Benadryl drips kicked in and it was most definitely nap time. It was somehow comforting - less lonely? - to not be the only patient in the room under 50.

Afterwards, Mom and I stopped so I could get Milkshake #1: Amaretto Chocolate Chunk. It was very good. I took an afternoon nap today and when I woke up, my fingers felt swollen, like I'd been hiking. (Steroids make you retain fluids, and I'm going through lots of fluids these days). So for now my fingers remind me of sausages, and my wrists are a little achy, too. But, no nausea, and with my two naps, I had energy enough to do haircuts with my friend Kristi. I'll try to put up pictures tomorrow. Just a warning: I look really cute with really short hair.

Also: today I managed to sneeze and to cough without very much pain. I might leave my girdle at home tomorrow.

Therapy: Day 1

First, some words that have been floating around my head:

1. Grazelda received her name simply because it's a name that I have always thought was remarkably ugly (my deepest sympathies for any readers out there actually saddled with this unfortunate moniker), and I have similar emotions toward the tumor/cancer that was flourishing in my gut. In fact, much like the word "moist," the name Grazelda seems to be quite unpopular - when I was in the hospital, a friend here brought me a doll, one of her toddler's, that she had christened thusly for similar reasons. The big bummer is that it got lost among the hospital sheets and left.

2. I think it sounds less dramatic if I call it "Therapy" instead of "Chemo:" Somehow it invokes green fields and soothing music instead of cell death and IVs. So here's hoping I get the less dramatic end of things!

3. Last night I was talking to a friend who'd undergone similar treatment a couple years ago, and she used the word "twisted" to describe the whole process. I find that very apt: I'm sick (though I feel better than I have in almost a month), so they pump me full of these drugs to kill the bad cells, and make me better, but the immediate effect is to make me feel sick and even compromise my immune system, increasing the chances that I will get (different) sick, so they pump me full of other drugs to make me (hopefully) not feel/get sick. Twisted.


Second, the report on today:

It is possible that today - between my anti-nausea cocktail (5), anti-nausea prescriptions (3), and chemo (3) - I received more different kinds of drugs than I have in my life accumulated up until this point.

But the therapy aspect was there, too. There's a large room with a line of comfortable, maroon armchairs and IV hangers in between each one. Patients come and sit and get hooked up to their goody bags and wait for them to drip out. Shirley is the main nurse there (and I'm just waiting for the opportunity for an Airplane joke . . . ). She knows everyone and everyone knows her and even though there were 2 people waiting to be hooked up, she took the time before hooking me up to answer all the questions I had accumulated and written down over the weekend. There is lots of laughter, lots of joshing around in this room, as I think is necessary.

Today there was an 84-year-old woman named Betty who also had ovarian cancer and was there for her last dose (after 18 weeks). She sat 2 chairs down from me and would occasionally share from her experience - IVs and hair loss and hanging out in the chemo room. Unfortunately she couldn't hear me, and at one point said she couldn't look at me because she'd start crying, which I will interpret to mean it makes her sad that someone so young and beautiful (her word) has to start this process instead of in some negative (in French accent: She ees so ugly, she makes zee old women weep) way. But I listened to her conversations with Mom and we shared gingersnaps with her and applauded when they handed her her diploma at the end of the day. I'm glad she "got out," but I wish I could see her again.

Most people it seems are on a 1-day-every-X-weeks schedule, which makes me a little jealous I guess, and feel like I won't get to know people very quickly. I think it'll be worth knowing people: We were there for seven hours today. Granted, it was a slow start, and there was some trouble with IVs (I'll probably get a PICC line), but with the long drive each way, it feels like a part-time job.


Third, the report on me:

"But Margaret," you ask, "how are you?"
Well, I don't feel like shit. Yet. I have 3 kinds of prescription anti-nausea meds at my disposal and I haven't had to use any of them. I haven't felt the need to nap, I ate a substantial (and delicious) dinner that friends made, and dessert. I'm probably a little more tired than usual right now. And the skeptical, cautious, cowering-in-the-corner, scared-out-of-her-red-underpants-that-this-is-going-to-be-awful cynic part of me qualifies all of that with a giant YET.

The other good news is that I'm supposed to be sure to get enough calories and protein. Milkshakes twice a day are highly recommended. How often does your doctor tell you that?!

Euchre . . . and Cancer

I was talking to my friend Kate the other day who had just finished a game of Spades. Now in my mind, Spades is most importantly a stepping stone on the way to learning euchre. Euchre is perhaps my favorite game, and maybe even more so because I can tell you why: I'm a competitive person and really dislike losing, but I hate losing even more when it reflects poorly on my own personal abilities. Euchre contains elements both of skill and of chance, and it's simple enough (uses few enough cards) that you can trace those elements and know when you messed up and when you just got screwed. One of my favorite euchre games was at a euchre tournament here in Tucson. I played more or less perfectly, my partners rotated in and out, and I lost game after game after game after game after game. I lost profoundly, and I loved it. I loved being able to deal with losing because I knew that it wasn't my fault.

As I was relating all of this to Kate it started to feel familiar. This, I thought, is how I feel about this cancer right now. A month ago, I was in the healthiest state I could imagine myself. I ate well and healthfully by anyone's standards. I exercised as a way of life, both in my job and in biking everywhere I went. I slept enough, drank plenty of water, didn't smoke, or drink in excess, everything. True, cancer strikes anyone at anytime, it's not caused by a poor decision, but I did everything I could to minimize my risk. Healthwise, I played a perfect game: there is absolutely nothing that I did to cause Grazelda to grow. It is so entirely not my fault.

And that attitude worked for my surgery: there was morphine and these funny self-inflating leg-warmers to keep me comfortable enough. I could deal with the crappy cards for a time, secure and maybe a little smug in the knowledge that I just got royally screwed. But here's where the metaphor breaks down. Remember that euchre tournament? Well, the loser's table I was stuck at all night was in the comfiest room in the house. There was a cozy fire, and good friends all around, rotating in and out of my games. But this Grazelda card could easily mean months of being totally wiped out, nauseated, isolated, and bald. Yuck. So yes, my positive attitude could crumble swiftly.

***
On the upside (there won't always be an upside, but today there is an upside), some friends here put together a lovely tea party this afternoon, complete with handwork, and presented me with a Bag O' Happiness - full of small, wrapped items that I should open, one after each chemo session. My friends know me well: presents + prolonged anticipation = happiness for Margaret.

I'm feeling good today. I went to church this morning, I ate well, and, for the first time in almost two weeks, I put on shorts instead of a dress. I suppose this means I'm well enough to start chemo tomorrow.

Somehow appropriate?

My friend Catherine sent me this video. As far as I can tell there's no deeper meaning, but what other purpose could an 80's rock song about Grazelda serve if not to be posted here?

Introducing Grazelda: the first 3 weeks

Being the first post , this is bound to be a long one, so I'll employ the 25-word summary strategy from VS quarterly reports. Read the rest when you have time:

Three weeks ago my abdomen hurt. I vacationed despite worsening fever and pain. Back home, the doctor removed my bread-loaf-sized ovary. Cancer! Chemo starts Monday.

"So who is Grazelda?" you ask, "I thought this was Margaret's blog."
Well, it is. In fact, Grazelda does not currently exist (very much?), but this blog is centered around the process of getting rid of her and making sure she stays gone. Allow me to explain . . .

Week 1 (and a half)
A little over three weeks ago, I experienced some extreme abdominal pain while getting ready for work, enough to call in sick. By evening I had convinced myself it was due to the normal course of a woman's life and that I was well enough to go on the roadtrip to Kansas scheduled for the next day. Symptoms didn't get better; they got worse. Fever and more gory things you don't want to hear about. Ibuprophen helped some, and I pushed through some important events, but when they were done, I admitted to myself that something was really wrong with my body. I went to a clinic in Kansas where they thought I had a GI infection, and that "my uterus felt firm," something I should get checked out back in Tucson (where I live right now). I proceeded with my travels as planned, driving to visit family in Cincinnati, another fruitless visit to a clinic, and then flying back to Tucson late on a Sunday night.

Week 2
Monday: I go to an appointment with a nurse practitioner I'd made while still in Cincinnati. By this time, my "firm uterus" is definitely worrisome to me, something I can feel - I can't suck my stomach in. My NP samples and examines and orders a CAT scan for me. I get a CAT scan scheduled for the next day, spend the evening gagging down Barium contrast and the nighttime making trip after trip to the toilet.

Tuesday: I wake up early to drink the second bottle of Barium and count it a major victory that I don't gag even once. With no sleep and no solids left in me, still feverish, I feel awful, but the scan goes without a hitch. I'm told to expect a call from my doctor in 3 business days. My doctor's office calls that afternoon to make an appointment for the next day about the results. Yes, it feels like a bad omen, but I'm glad I don't have to wait. I think this is the day I stop wearing anything with a waistband in favor of slightly over-sized dresses.

Wednesday: My nurse practitioner tells me I have a 16 cm mass in my abdomen, probably on my ovary, which looks like it could be cancerous but they really can't know for sure without a biopsy. She refers me to a surgeon, a really good gynecologist oncologist and sends me on my way. I can feel the mass from my belly button all the way down. I name it Grazelda. My mom flies in that evening.

Thursday: I wait around, enjoying visitors from my mattress-on-the-floor-in-the-living-room, worrying. I don't sleep well, my subconscious is occupied coming up with ways to convince the receptionist to get me an appointment with the surgeon ASAP. Most of them start with "I don't want to be dramatic, but . . ."

Friday: I call the surgeon's office and (without even using my stellar intro) convey my need to be seen. Amazingly they agree to take me as a walk-in. The gynecologist oncologist/surgeon, Dr. Alton Hallum III ("call me Hank"), is indeed really good. First, Dr. Jennifer Hallum, his wife, listens to all my symptoms, taking more time and asking more thorough questions than any nurse or urgent care physician has. After seeing Dr. A. Hallum, who explains things in English with good metaphors and hand gestures, I'm scheduled for surgery to take out my ovary and fallopian tube on Monday and shuttled off to the hospital to do the pre-surgery intake work.
In the middle of a bunch of paperwork, the nurse at the hospital takes my temperature as 103. Phone calls are made, I'm admitted to the hospital through the ER, and my surgery is bumped up to Saturday morning.

Saturday: I'm cut open, and my offending innards removed: my right ovary, which has grown to the size of a loaf of bread and the consistency of jello - the doctor kept using the word "goober" to describe it after he'd taken it out - the fallopian tube, my appendix and a few lymph nodes that the tumor had adhered itself to. I don't really remember much of Saturday, but between morphine and some very kind friends (and my mother who rarely left my room) I was quite comfortable.

Week 3:
This week has been spent recovering from surgery. I was in the hospital through Monday and of course have the sort of hospital stories that one collects, mostly involving bodily functions or friends taking care of me in ways I couldn't have imagined (or both).
The transition from morphine to percocet was a difficult one and after a rough first evening home, and abandoning percocet altogether as "not worth it," I've been getting stronger and more independent, having more appetite, less nausea, and using less ibuprophen. I wear an elastic girdle under my dress when I'm not laying down to make me feel like my organs are securely in place. Sometimes it feels like they're still searching for where they should settle, now that Grazelda is gone.

On Thursday I went to the doctor's (gynecologist oncologist's) office to get my 14 staples out - and a few tiny stitches in my belly button. This was also the time to discuss further treatment. The pathology report was back, and I had been officially diagnosed with a yolk sac tumor. This makes Grazelda an endodermal sinus tumor, which from my understanding means an egg in my ovary decided it wanted to become a placenta and went pretty much bonkers making that happen. In other words, I have a fairly rare form of ovarian cancer, but the good part (??) about this kind is that Grazelda grew so quickly I experienced pain and got it out of there. "There are no visible signs of cancer in my abdomen," according to my doctor, but without chemotherapy it would almost certainly return. Fortunately (??), this kind of cancer is very responsive to chemotherapy. So I start on Monday. (!!)

I did have the choice of waiting another week to heal a little more from my surgery - it still hurts to cough, laugh, sneeze, walk or stand too long, etc. But in the end I didn't want to wait around another week doing nothing, giving Grazelda time to regroup. My schedule is as follows: I'll go into the office Monday through Friday for one week, several hours each day and sit in a long line of chairs with an IV in my arm. Then I'll have two weeks off. I'll do that cycle a total of 4 times. No one knows exactly how an individual's body will react to the particular combination of drugs they'll give me to kill Grazelda, but I'm told to expect fatigue and nausea at the least. And I will lose my hair.


Phew. If you made it this far, congratulations! (I feel like people tell me that a lot lately). I would love to promise frequent updates with engaging tales of triumph over adversity, inspiring reflections, and witty anecdotes about my bodily functions. But right now I don't feel like I can promise anything. I will try to keep this updated with information about the general state of my health because I feel loved by many people with whom I want to share this process.


True Story (I wish that implied the above were fictitious.):

The other day I was noticing that I was still being served water from a glass with a straw.

"Mom," I asked, "why do you have to drink out of a straw when you're sick?"

"Because," she answered, "Being sick sucks."

I quite agree.