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Tuesday, April 26, 2011

What did you do this week?

It seems weirdly fitting that I've been working on the same post for a nearly a week and I arrive this morning to a blank slate. Good thing I've just had a nice tall tab of Ativan and it's not yet 6 am - I am having no negative reactions to the change.

I will try a new angle and take you on a trip through the past week:

Thursday: Receive blood transfusion. It is easy. It takes about five hours. I eat a turkey sandwich in the middle of the treatment, then fall back asleep. Expect to feel fully refreshed the next day.

Friday/Saturday: Come dangerously close to having first Exorcist moment. Stop making sense when speaking. Sleep alot. Cry a lot. Feel sick, make self throw up most recent meal—prunes and peanut butter. Smoke lots of weed, yet for the first time it does not induce immediate hunger. Annie returns.

Sunday: Vomit chamomile tea in morning without provocation. Barb calls doctor. Am brought to see doctor. Doctor assesses the situation. He asks questions like "How much did you eat yesterday?" and I say "I ate one mile." He says, "What was your lowest weight?" and I say "220." He sends me to hospital, where I am admitted.

Monday: Continue speaking like possessed creature. Tell mother I can't possibly shower "with that hat in the toilet." (the pee-capturing hat.) It does make sense, just sounds ridiculous.
They have held me without food or water from midnight Monday morning 'til noon, so they can do a mini-operation in which they implant a something called a port-a-catheter in my chest above my heart. This a handy device through which all blood and other fluids—including chemo chemicals—can be given and extracted. Saves a lot of wear and tear on the old arm veins.
Still all fluids are withheld through noon on Monday and all I can do is babble about gatorade. It's all I'll talk about, to anyone who'll listen. Any member of the hospital staff, including the orderlies who wheel me from place to place, hear about my lust for Gatorade. One yellow, one orange, and one purple. As soon as I come back from under the anesthesia.

Tuesday: I am full of Gatorade. The port is locked and loaded in my chest. I'm acting half as batty as I did when I arrived. It turns out the reason for my lurch in behavior was a spike in my calcium level (of all things). Apparently, when your calcium levels go up 5 Mls per decibel (or whatever) it makes you crrrrraaazy. So they gave me some anti-calcium stuff and I become me again. Only this me is on steroids, and here's what that looks like:
I wake up Tuesday before dawn, looking for my cell phone so I can transfer my photos onto my computer and start a blog post. Unable to find cell phone, I ransack both Annie and my luggage, crawling around behind her bed on my hands and knees on the (not-so-clean) hospital floor. I fold and re-pack all of our clothes. I call my parents at 6:30 am asking have they seen the phone. They have not.
I "accidentally" wake up Annie, who tells me where to find the phone. I start a blog post. It goes unfinished, for reasons I can no longer remember. I spend the day in complete OCD mode, trying to re-organize everything in the room. But nobody wants me to bend or lift, as falling or bruising or breaking could apparently be tragic. Nobody wants me to do anything but sit in bed and direct traffic, which kills me.
Annie and I fight over things like whether or not I can get into my red bag and look for my own socks. I get up to pee and then lurch around tidying things, justifying myself by saying "well, I already had to get up to pee..."

Tuesday evening culminates in epic breakdown, witnessed by Dr. Dad. He has come with some bottled water which Night Nurse T. claims the hospital does not supply after 6 p.m. I have developed some issues with Night Nurse T. It's not that I think he's bad at his job, it's just that I don't entirely trust him to empty my pee hat or bring him the extra sheets I'll need when I sweat through the night, or remember what medicines I'm supposed to take at which time, or understand what the hell to do with me in general. The last time Night Nurse T. left my room, in fact, I had said to him, "Oh good, this means I won't have to see you again 'til midnight," after which I had felt terrible.
So Dr.Dad arrives in the middle of this scene and says, essentially, "Good God, you're hysterical, why don't you just page the nurse and ask for an Ativan?" And I sob and explain that I can't possibly face Night Nurse T. again, not after what I said to him and how I feel about him. And I cry and cry, and Dr. Dad goes and gets Night Nurse T., who comes back with an Ativan looking all hangdog and apologetic but still doesn't empty the pee hat or bring the extra sheets.

Wednesday: Am forced to draw from previous night's experience and tell oncologist about encounter with Night Nurse T. This is extra difficult as I'm extra self-aware that every time I speak, I seem to go on about three times as long as necessary. People keep turning to me and gently urging me to simplify. I think I am being simple.
So the simple issue is, I'm a control freak with some new anger management problems. I hate being stuck to a 10-foot radius surrounding my bed. I hate that if I break that 10-foot radius, something bloody will rip out of my chest or something expensive will rip out of the wall. I hate not being able to go outside. I hate not being able to leave 3 south. I hate having to ask Annie to get my socks out of my red bag. I hate having to ask people to do anything for me. I really, really, really hate the nurse-call button. I hate being at their mercy. I hate not knowing if they got the beep, and the annoyed sound in their voice when they do. I hate that the chemo-drip machine gets air in the line every 20 minutes and beeps incessantly until someone will fix it, and the only way to get someone to fix it is to press the nurse-call button.
I do like all the nurses, though, except Night Nurse T. And I love my parents. And Annie. But this is not the segment for that.
So the resolution to the epic breakdown is to get on a lower dose of steriods, and a regular schedule of Ativan, and have a very nice student nurse named Kelly hand-write me a copy of her color-coded notes which tell me exactly what medicines I need to take, what for, and at which times per day. This turns out to be all I really require.

Thursday: Continue to make way through 2nd liter of Orange-Slice-Colored chemo bag. (I'd say Orange Gatorade, but I love it too much). This is now something like day 2-or-3 of 4-day long chemo drip marathon. I don't especially try to keep track of the days. Oncologist has arrived at a plan where I finish this chemo, hang out a week or so at home—how I LONG for some Yard Time now!and then drive up to have a consultation with the Stanford People. This here cancer, it seems, might be more aggressive then they initially thought, and require some measures that Kaweah Delta District Hospital cannot provide, such as a Stem Cell Transplant.
I'm not yet informed enough to spread statistics about Stem Cell Transplant as a therapy for Acute Diffuse B-Cell Lymphoma, but I know they're considering it. I also know they use your OWN stem cells to grow healthier ones, or something, so no donations will be necessary.
Anyway, spent Thursday morning in good spirits which somewhere around 2pm gave way to poor spirits which involved me curling up in the fetal position and crying in Annie's lap, so she put some pants on me and took me out onto the Patio, the only place outdoors I'm allowed to go. The Patio is a pretty terrible place, but I won't describe it here because we fooled around and took some pictures, which Annie then got tipsy and edited into a video. Am hoping the video makes it to this blog very shortly.

Friday: Spent the entire day watching Inglorious Basterds in bed. Had many local visitors (parents + friends of parents) which made it possible to watch a 2.25 hour movie in 6 hours. Had no appetite. Slurped on Ginger Ale. Spent many hours regretting having put on Old Spice Deodorant—think I'll never want to smell it again. On the plus side, received Tremendously Terrific Care Packages from Tremendously Terrific Friends, which I could do nothing but sob over. Friends! Sob! I miss you!

Saturday: (This present moment!) 7:07 am: Dr. Fill-In Oncologist has just declared that this is to be my last bag of Orange Chemo Junk (I think there were four in total). That will be followed by a much smaller bag of Cytoxin (fun name, right?) which will empty itself into my veins and that by tomorrow...if all my blood work looks good...I can go HOME! But I can't bear to set myself up for disappointment. Who knows what the blood work will look like? How can I predict the capricious nature of my hemoglobin, calcium, white blood cells, LDH levels, and what the fuck else? I can not.
Also, I am bald now. Like, down to the nubbins, bald. It fell out as soon as I shaved it off. I look in the mirror and I see Gollum.

Tuesday, April 19, 2011

A Bloody Decision

I went in for my weekly blood test today. Until today, it's been very hello-how-are-you, fine-good-no-complaints, great-keep-it-up! And it would end. But today, Delsey, the woman who takes my blood and goes over the results with me, had some more interesting feedback.
She explained that my hemoglobin levels have gotten lower since last week. (And the week before.) She said at this point, with my level at 8.7—normal is 12.5-16.5—she could authorize a blood transfusion.
Blood transfusions sound scary, but I think there is still a lot of mental backlash in people's minds leftover from the '80s. My understanding is that procedures have been improved to the extent that doctors can pretty much guarantee there's no leftover Hepatitis or HIV floating around in there.
Yes, of course, there are always risks. My dad told me about a patient who swore that after her blood transfusion she became allergic to avocados and horses, or something like that. Definitely the avocados. So who knows what little wacky thing could happen to me?
I've chosen to do it because my short-term goal is to be in the best possible shape I can be for my next chemo treatment (a week from today, next tuesday) and I think I will most likely stand a much better chance if my blood levels are stronger and I'm not super sick and anemic. The transfusion is this Thursday, so I'll have the four days before the chemo to balance out.
I can sense the drop in HGB (hemoglobin) pretty intuitively. I do feel more fatigued, more winded, several levels less energized. In fact, my whole experience over the past week has been that since last tuesday, when the first round of chemo peaked in my body, I've been aware of some more "cancery" feelings creeping back in. I got some gnarly hives on my legs twice in the middle of the night this week (see ugly photo below), have been running that low grade fever, and then sweating like crazy every time it breaks.
All of these things, I think probably including the drop in my HGB levels, tell me that the cancer is in some way holding a little more sway, and isn't currently being run off like a cat with a water gun, which is what I'd like.
The other thing that has to be considered is that if I weren't to do the transfusion, we would be gambling that my blood levels would be high enough to the full dose of chemo next week. If the levels stay this low or get lower, it is likely that they would have to reduce the dose a second time—and that is not my purpose.
My purpose is to be here getting chemo and thus getting cured from cancer. There's no other way to say it. So if a blood transfusion, a simple preventative measure, is what it takes to get more chemo and less cancer, then I'm all about it.

(Thigh Hives! Not for the faint of heart.)

Monday, April 18, 2011

Fo' Stage gets a Haircut

Annie went back home to Massachusetts yesterday. Take care of business, see the fam, that sort of thing. I'd told her I wouldn't do the big head shave until she got back Saturday, but it turns out it had to happen today.

Nick and I were out front having Yard Time when I turned to look down at the pillow I'd been laying on. It looked like there were a few too many extra hairs lying there. I ran my fingers through my hair and came back with, again, a few too many. No clumps, thank God, but enough to send me running for the clippers.

Since I've had my head shaved before—see blog entry Diagnosis—this was not a traumatizing experience for me. I actually quite like the way it feels to have air touching my scalp.
After the shave, we went rummaging around in my mom's old silk scarves to prepare for my future role in cancer fashion.
Nick turned out to be a very sophisticated stylist—I'd expect nothing less, really—and told me if I practice my scarfing for 15 minutes a day "until I really need it," I'll be a classy Old Hollywood scarf-wearing beauty in no time. I love that man.

In other news, my oncologist has freed me from the bacon diet. Well, as much as I want to be freed. He said that any weight over 120 was perfectly healthy (I think I'm almost to 127 now) and that he wouldn't start worrying until I get to less than 110. Less than 110! That hardly seems possible. So, I can ease off that fast-food bender I never actually went on, and be comfortable knowing my body is in an ok place.
I still stuff myself more than is comfortable most days, just knowing I'm going to need any extra layers I can get, but at least the Vigilant Hamburger isn't coming after me anymore.

I've also got the good graces of the oncologist to join the cancer wellness program at the local gym! The "program" is actually sort of a joke, as they don't have any special classes or specialized trainers to work with cancer patients, but I do get a free membership with my doctor's recommendation.
I met with a trainer who sees all new members, and he helped me pick out a strength-training routine I can do whenever I feel well enough.
After all this intensely focused eating, I have the urge to do more than just accumulate new fat around my middle. I can tell that I've lost so much strength and muscle mass already. Honestly, my ass is just like two little flaps in the breeze. I would love it if all this energy I'm taking in could be spread throughout my body and put to good use. If, at the very least, I could maintain this level of muscle mass, or something close to it, I'd be very happy. I'd hate to crawl out in October with no flesh on my bones and then say, "hmm, looks like it's time to get down to the gym!"
Plus Annie has also joined the gym and it's so much more fun to go with a buddy.
And, now that I have my head shaved, I'm going to look really badass when I'm working out there. Really GI Jane. Hopefully nobody will notice I'm struggling to pull down 10-lb weights on the machines!

(Bonus old photo of Nick and I, both in the hotness of our early twenties. I'm bald, we're both fabulous!)

Thursday, April 14, 2011

The Real Housewives of Millwood

This photo here is a map (not to scale) of Millwood, where we live. It is not a gated community—yet. Would a gate at the single point of entry and exit to the neighborhood perhaps help boost the severely diminished property values of our outmoded '80s-designed suburban enclave? Some think it might.
Gate or no gate, it was a pretty quiet, safe place to be a kid. It is now a pretty quiet, safe place to be a cancer patient. And we are getting to know the neighborhood on a very intimate level.

We walk around Millwood at least once a day (see route in photo). Many times twice. Aside from needing some activity to digest the mass quantities of food I've been stuffing into my body the past week, it's really about the need for a change of scene. To be out of the house. To be going to point B from point A, even if point B really is point A to begin with.
(Annie has never lived in Suburbia before. For her, each trip around the loop makes her feel like she's living in an episode of Curb Your Enthusiasm. It has something to do with the landscaping. She keeps saying she needs to watch it again now that she lives in California. That she's going to see it through a whole new set of eyes.)
I feel I know what the other Millwoodians must be thinking. There go those two girls, pacing through the neighborhood again. Where did they come from? Who are they? Are they smoking weed? And then we disappear, around the corner at the end of the block, only to be seen again the next day, in the same outfits...

When we're not rollin' through the streets at a slow pimp pace, we bring beach towels onto the front lawn and have what we call "yard time." Sometimes we read, sometimes we nap, one time we listened to Abbey Road, but mostly we just sprawl around and chitchat with our new friends, the Ladies of the Cul de Sac.
Living in the house to our left is Wilma. She and Annie hit it off big time last year when she and her husband Bill came to vacation with my parents at the Island. Wilma calls our yard time "hanging out in Santa Cruz," and she comes over to lend me books, or show us the ladybugs she's releasing into her garden that evening, or just shoot the breeze. I don't know if she knows it yet, but she's Annie's new best friend.
Directly across the street lives a woman named Luann, a tall, quiet woman with excellent style and a dry sense of humor. She and my mom have become besties in the past few years, and are ever scurrying across the street to visit/help/hang out with another, especially if it's an American Idol night. Luann is also not a stranger to our yard time. Not only does she tolerate the view of us spread out like greasy pandhandlers right out front of her living room window, she has also come over to offer her DVD collection and introduce us to her six-year-old grandson. She is one classy lady, that Luann.
Lupe lives diagonally across to the left. She is the third in my mom's flock of lady friends. She makes some mean tamales and yesterday brought us a batch of homemade paella. She has spent the least time hangin' with us in the yard, but I'm pretty sure that's because she has a busier life than the rest of us.
The Ladies of the 'Sac are an older crowd than we're used to running with, but we sure do appreciate their company.
When yard time wears thin, or the sun goes behind a cloud, sometimes we go a little further afield and truck around Visalia in my High School Ride, a navy blue 1990 Isuzu Trooper (see photo) My dad has been babying that car for 21 years, and it drives like the day we bought it. It's still a lumbering beast of a car, but now it's like a cool, vintage lumbering beast.

We just roll down the window, get some '90s jams on the radio (a little Will Smith here, a little Tupac there, a little TLC on the side), and it's like being in a time machine. The car feels like an extension of me that got disconnected long ago—driving it is like being reunited with a phantom limb. I feel like I could drive that car around these streets in my sleep.

And this, right now, is what cancer looks like for me. Walking around the neighborhood, driving around town, singing along to the music, and laying under a straw hat in the sun. I mean, I still have hive outbreaks and emotional breakdowns and less-than-champion moments, but overall, things are pretty mellow. It's not a walk in the park, but the walking certainly helps.

Friday, April 8, 2011

Old Creaky Bones and the Bacon Diet

Turns out 100 mg of Prednisone is pretty powerful after all. Thursday my dosage went back down to 20, and it didn't take long for me to start feeling the side effects of my Neulasta shot (that's the one that makes my white blood cell count higher and helps prevent infection).
Turns out the stimulation of white blood cell production happens inside the bone marrow, so that when new blood cells are being mass-produced, your bones throb. That hurt. Vicodin helped.

That fun experience also earned me a new nickname: Old Creaky Bones. I made it up myself. I like Old Creaky Bones, I think it's funny. And appropriate. I feel much older and creakier these days.

Ol' Creaky B is actually my second nickname. Annie started tossing around the first one scandalously early on, and now it has stuck. She calls me Fo' Stage. (As in Stage IV). Like, in a rap way. Like this-
Annie: "What up, Fo' Stage?"
Kia: "Not much, What up wit' you, No Stage?"
And that's pretty much it.

Now, Fo' Stage, AKA Old Creaky Bones, has a new mission. The goal is to replace as much of the weight I lost during the spleen invasion as I can, before the chemo (allegedly) gets harder, makes me sicker, and depletes me deeper.

Before I became symptomatic, I was a comfortable, healthy 134 pounds. By the time I got to California in mid-March, I was down to about 127. At the beginning of this week, my lowest point ever, I weighed 122.5.
Predictably, the parents started freaking out about it before I did. Major battles (er, negotiations) have taken place regarding the Cancer Diet I have chosen and it's effectiveness in helping me put weight back on and keep it there.

The thing is, I don't want my Cancer Diet to look any different than my pre-cancer diet. This means I wish to eat vegetables. And fruit. Organic meats. Quinoa. Avocados. Rice. Beans. Sweet potatoes. Broccoli. And lots and lots of cooked greens. (I mean, it's not like I never ate BLTs, chicken wings, Local Burger, or Roberto's Gluten Free Pizzas, but those were special weekend outings, not daily staples).
I may have spontaneously thrown all my misgivings about Western Medicine to the wind, but my nutritional principles will be harder to let go of. My body is ill. Should I not be feeding it the simplest nutrition it could ask for? Vitamin-rich, easily digested cooked vegetables? Protein-rich, hearty stews? Fresh green salads elegantly dressed with Flax oil?

Ironically, there are certain very opinionated parties living in my midst who believe that my pre-cancer diet isn't fatty enough to wage this uphill battle. Every day they practically beg me to go to In N' Out Burger and not come back until I finish a Double Double, Fries and a Milkshake. (See self-assigned art therapy drawing at top).

While I understand the importance of making every calorie count and packing on the heat as a kind of protective layer of future life support, I feel deeply doubtful that my great Cancer Redemption is going to come as a result of a fast food diet.

Most people get cancer and start eating healthier. I've been trying to stick to my guns here, but the cold hard truth is that avocados and cashews just don't seem to be laying it on as quickly as Shredded Beef Enchiladas with green sauce and cheese from Henry Salazar's might otherwise do.

Luckily, a compromise has been reached. A compromise that, like all good compromises should, involves pork fat. My parents and I were in the midst of yet another noisy, passionate disagreement about my weight and my wellness when it hit me. The fattiest, greasiest, yummiest thing I would be happy to eat day after day, right alongside my kale and flax oil. Bacon! Don't have to twist my arm there. Bacon for breakfast, bacon for lunch, bacon on the side with dinner. Whatever else it is I'm going to eat, I'll just have some bacon with it too.

Today's weight: 125. Moving back up the charts! Time to go see about breakfast.

(Fo' Stage and No' Stage)

Wednesday, April 6, 2011

A Rock and a Hard Place

Annie and I were resting in front of the TV. We hadn't been in Visalia long, maybe a day or two. Shahab happened by, saw us parked there, and knew he had a captive audience.

*Background Interlude—a lifelong lover of the outdoors, Shahab's attention switched from skiing to rock climbing in his mid-fifties. In the past decade, he has accumulated an astounding collection of rock-climbing gear (which he squirrels away all over the house, from guest-room closets to unused showers) as well as obtained himself a copy of what appears to be every climbing-related DVD ever produced. Those he keeps upstairs, with his collection of Yoga DVDs and Bollywood Dance videos.*

And so a particular Climbing DVD was selected and produced, with the specific purpose to inspire. I was skeptical at first, but within the first two minutes was utterly blown away. The video is of a kid named Alex Honnold—maybe he's 22? 23?—solo climbing Half Dome in Yosemite. By himself. With no rope. 2,000 feet. In less than 3 hours. Don't believe it? See it here with your own eyes.

It is astonishing. Obviously he is familiar with the route, knows all the moves, could do it in his sleep, whatever. But to have the mental capacity to trust himself to just step up onto that giant rock face and keep putting one hand in front of the other, followed by one foot after the other, over and over and over again for two thousand feet. Without any hesitation, or second-guessing, or safety fallback whatsoever. The mind boggles. Or at least mine does. And I do feel incredibly inspired.

So, back on land, here I am, five days post first-chemo in what will hopefully be an uneventful 6-month stretch. Aside from a teensy touch of nausea the first two days—immediately relieved by Compazine and MJ—I haven't actually felt any side effects. Am a little tired, sure, but the 100mg of steroids I've been swallowing every morning seems to be balancing that out as well. Tomorrow I go back down to 20 mg. Could that be the great game-changer? I doubt it.

Combine all that with the internal sensation that Mega-Spleen is howling in retreat like the Wicked Witch of the West under a bucket of water, and this is the reality:

I feel better than I have since the whole thing started.

I feel better than I have since the whole thing started, and it's terribly confusing.

When I went in yesterday for my weekly blood-test at the SRCC (see photo below), Anna and the other nurses were excited by my reports of overall well-being, and happily reassured me that if I hadn't started feeling sick by now, then I definitely wouldn't be getting any sicker before the next treatment. (After the next treatment, which will definitely be a stronger dose, who knows?)

Obviously this is great news. Who would ever wish to be gut-wrenchingly, bone-achingly, mind-numbingly ill? That's craziness! But for now, with my next appointment on the 26 of April, that leaves three loooong weeks to idle away the hours in meditation, preparation of healthful meals, walks around the block, art therapy (see photo above), cribbage games, and restful visualizations of healing. I guess this is what I imagine rehab must be like. Except I get to smoke the pot.

The problem is, idleness has never suited me. I've been genetically hard-wired by a long line of overachievers to believe that sitting in restful contemplation of anything is a waste of time. If I am sitting on my ass, what else could I be achieving? What languages could be learned, instruments mastered, talents honed, skills improved, muscle groups developed, accomplishments accomplished?!

Basically, ever since the first wave of chemo turned out to feel more like a motorboat wake than a tsunami, I've started having these crazy thoughts that maybe just sitting here surviving cancer isn't enough.

I should be taking a longer view, I think at times. What exactly is my plan once I'm through all this? Shouldn't I be signing up for science courses at the local junior college in case I do decide to go into the healing arts? Or looking up Masters' Programs close to Northampton? Or studying for the GRE? What about going to the gym? (Dr. Dad doesn't like to let a day go by without reminding me that Lance Armstrong rode his bicycle every day while he was doing chemo.)

Combined with that strange restlessness is an intense juxtaposition of feelings about being at home.
On the one hand, it is my sanctuary. The only place I could ever imagine myself being while I go through this. Everything around me is deeply familiar, in that way that only childhood homes can be. Only here can all my needs be so perfectly met. Only here can I have the luxury of moving from one pool of sunshine to the next, napping in the grass or praying on the patio. Only here do I feel safe enough to fully let myself experience whatever fate has in store.

On the other side of sanctuary, I'm almost ashamed to admit, is a slightly bitter taste. Is it monotony? Not a whole lot changes on the day-to-day in these parts. Grass green today? Check. Pool still blue? Yep. Dog still begging for meal scraps? Check again.
Also, after 11 years of living on my own, I've suddenly regressed from being a fiercely independent nearly-married almost-30-year-old to what feels like a teenager again. My parents are as open and welcoming as they could possibly be, but the house still comes with their rules. Certain sponges must only be used for certain purposes. Cars must be parked in the garage at specific angles. Elaborate computer protocol is observed. Towels folded. Music kept at a respectful volume. Tidiness maintained.

Regardless. The only way past these little whirlpools of doubt, confusion, boredom and restlessness is focus. Alex Honnold-like focus. No matter what I'm doing with myself day after day, whether it's being sick or being not sick, designing my future or watching six episodes of Friends in a row, I am really climbing half dome. Putting one toe after another in that little bitty crack. Moving my body up, inch by inch, foot by foot. I can't look back, or think of other things I'd rather be or should be doing. Nor can I look forward, to the impossibly distant top of the mountain. I can only look to where I next put my hand. Breathe. And stay attached to that rock.

Sunday, April 3, 2011

Chemo Q & A

In a way, chemotherapy seems to be more scary than Cancer itself. All we hear is how sick it makes people, how miserable and feeble and bald it makes people, how it brings them within an inch of death, just so they can have a chance at life.

I don't want to be naive about it, but I'm trying to keep all that from being a self-fulfilling prophecy. I'm not just going to lay trembling in my bed, waiting for the awful to set in. I'm just going to keep getting up, getting out—like, around the block and back—and being Kia.

So, here's what I can now tell you about my chemotherapy expectations:

Q. What is it like to be in the chemo-treatment-place?
A. So far, so good. The chemo unit is built in a half-circle, and all the patients sit in recliners in their own little areas (separated by curtains), looking out the window, watching TV, reading, or hanging out with a companion.
I would not describe the atmosphere as morbid, depressing or even sad. The nurses are upbeat, and, from what I saw my first day, all the other patients seem comfortable. The vibe is even a little cheerful. I think most of the patients are grateful for their nurses and the care they're receiving.

Q. Is it painful?
A. No. The only pain is the little stick of the needle when they put the IV in. The rest of the time they just drip the drugs in through the IV, which I don't feel at all.

Q. What chemo drugs am I taking?
A. The actual drugs that do the cancer-fighting are Vincristine, Cytoxan, Adriamycin (looks like kool-aid and is probably the most caustic) and Rituxan. Before they give me those, though, I get two anti-nausea drugs, Emend and Aloxi, and Zantac to prevent acid reflux. 24 hours after the big chemo infusion, I get a shot of Neulasta, which helps my body increase white blood cells and maintain necessary immunity so I don't have to become a real bubble-boy.

Q. What side effects might they cause?
A. A billion. The relevant ones are nausea and fatigue.
I've also been prescribed Compazine and Ativan to battle the nasuea at home, and have also been gifted with some herbal anti-nausea therapy that I am ever so thankful for. It works wonders ;)
Not so much I can do about the fatigue, except rest.

Q. Am I going to lose my hair?
A. Yes, that is another likely side effect. As I'd rather not re-enact that cliche cancer moment seen on so many TV shows lately—I'm talking to you, Sex & The City, Brothers & Sisters, and Grey's Anatomy—I think I'm going to get out Shahab's electric razor and do the job myself in a couple days.
As many of you know, I had a major encounter with lice while studying abroad in France my junior year of college. I arrived in early October with waist-length hair, contracted les poux within three weeks (it's pronounced poo) and, after so many struggles with toxic shampoos and sleepless nights on the concrete floor of my dorm trying not to re-infect myself, I ended up shaving my head on New Year's day.
It was a major Identity Crisis at the time, but I did have a little epiphany between nit-combing where I realized that, if my hair was that important to me, I should probably just cut it all off anyway. A character building thing. An anti-vanity thing. Once it was over, of course, I realized I'd never felt so free.
All this is to say that I've grappled with the head-shaving thing before. Been there, done that. So now, it just aint no thang.

Q. Am I going to seek any other alternative/complementary therapies to help my body undergo this intense process?
A. Yes! A few of you had asked in the past if I was considering alternative treatment, and I am. I like to use the term "complementary," because it is more inclusive and implies that I will seek out several healing modalities during this journey.
My former herbalist and boss recommended I have a consultation with the folks at the Mederi Foundation in Ashland, Oregon. (I can do it by phone). My understanding is that they will look at all the materials my current doctors have collected (blood tests, lab reports etc) and go over the list of all the medications I've been prescribed. With that information, they will design a herbal protocol and diet plan specifically for me, as well as introduce a spiritual component that I can practice during my healing time.
Skeptics, be calmed. This avenue has been hotly debated within the immediate family zone and I have promised to cross-reference all their suggestions and be savvy enough to make sure they're not selling me snake oil.

Q. What will I be able to eat while I'm on chemotherapy?
A. Am hoping the Oregon peeps will come through with a diet plan that's perfectly nourishing and easy to prepare. In the meantime, Chemo Nurse Anna wisely counseled me to avoid eating my favorite things during the onset of this medicine. Simply because, were I to become violently ill in the next few weeks, I would never ever want to eat any of those things again in my life! Smart cookie.
Also though, I know it's only been like 36 hours, but I think I can already tell that Mega-Spleen took a hit with the first round of the Chemo. That terrible pressure on my stomach—the feeling of organs pushing up against ribs—I swear, it's diminishing! Soon I will be able to eat like I was meant to eat! Did someone say Fourth Meal?

Q. How important is drinking water?
So important. Anna said that people who like drinking water and know how to stay hydrated respond infinitely better to the chemotherapy and feel less harsh side effects. Makes sense to me—so many dead cells left behind that need to be washed away! I have always been a fan of water, but now I have to give another shout-out to Abby Riley, who introduced me to the "adult sippy cup" I've been toting around since my first trip to Target. (see photo). I can drink while laying down and not spilling all over myself! Love. It.

Q. What about alcohol use and sexuality?
A. I add that question as an excuse to copy word-for-word what's written in the little pamphlet they gave me.

Alcohol Use:
Please do not use alcohol on the day of your treatment. Occasional alcohol may be ok.

Chemotherapy will not harm your sexual partner. No one can contract cancer from you. It is ok to carry on with sexual relations. The only time you will be asked to refrain from sexual relations is if your blood counts are low.

Any more questions?


To everyone who has stopped to comment on this blog:
I cannot tell you how much your words of feedback and encouragement mean to me.
Each comment is a wonderful reminder that people are out there, following along with me on my journey, and gives another nugget of love and energy to take with me. I am so thankful, inspired, and tickled by all of you.

When I learned that some people were having difficulty leaving comments, I did a little investigating.
I've now changed the settings within the blog, making it so that anyone can comment, anytime.

All you have to do to leave a comment is:
*type your comment in the Post Comment box
*below that box it will ask you to Comment As:
*Select either Name/URL or Anonymous from the drop-down menu
*If you want to be anonymous, select "anonymous"
*If you want to leave your name, type it in where it says "name" and leave the URL option blank.

That should be all it takes!

Friday, April 1, 2011

Chemo: Day 1

Here are some things I love about the Sequoia Regional Cancer Center:

I love my Patient Account Coordinator, Maria. She has been my one true advocate in the insurance/bureaucracy mess. Her role is making sure each patient has the insurance coverage they need to receive treatment, which clearly involves many hours on the phone hounding insurance companies and government agencies until she reaches that goal.
Maria is superb at her job. I love her take-no-shit attitude, her clunky necklaces, her fake nails, her high heeled boots, her sassy haircut and the patience and kindness she has for my family's many questions.

I also now love my Chemo Nurse, Anna. The first thing I noticed about her was her hands. I'd just gotten settled into my standard-issue chemo recliner, and she came over to check my veins. She started chatting and kind of petting my arm, and I was instantly struck by the quality of her touch. It was so calming and lovely, and her hands were cool against my warm skin, incredibly soft and silky smooth. Every time she touched my arm, even just to wipe off some old IV-tape residue, I felt a little wave of cool, clean comfort go over me. She must have one hell of a moisturizing regimen, I thought at first. Now, after some space and reflection, I'm pretty sure it's not Anna's hand lotion that put me so at ease. You just can't bottle that kind of magic.

The third thing I love about the SRCC, if I may call it that, is the space itself. (Far more aesthetically pleasing than the patient rooms in the 3 South wing of Kaweah Delta Hospital.) The honey-colored wooden ceilings give the place a touch of a lodge-y feel, and even give the florescent lights a bit of a warm glow. Big windows let in lots of natural light, and provide a view of a courtyard filled with actual foliage! (Will try to get a picture next time). Big points for atmosphere, SRCC. Well done.

I'd awoken this morning feeling pretty agitated. Have been having really obvious bad dreams, like the one where I'm on some kind of train/rollercoaster, and it's going really fast in the dark and I can't see the tracks ahead of me. It twists and turns and goes upside-down, but because it's so dark I can't see the tracks and brace myself for any of it. Then we slow down outside the tunnel, and I see a happy Beach Boardwalk scene, with so many of my friends smiling on the sidelines, and I'm waving to them and trying to get off to go see them, but of course I can't, and then the train picks up again and I'm back in the dark, holding on for dear life.
I mean, come on. Can dreams be cliche?

Anyway, I felt in need of some kind of centering exercise before the big First Treatment, so Annie and I dragged some old sofa cushions into the backyard and sat in the morning sun.
Even though I'm still on the bunny slope of a Meditation Practice, my intention for this morning was very clear. I know there have been so many people thinking of me and praying for me, sending their positive energy and good vibes across so many miles. What I wanted to do this morning was receive it. And so I did. I just put my little mental antenna into the air, opened the signal, and let all those prayers and thoughts and vibes pour straight into my heart. From there I could feel them disseminating to other places in my body, building up my strength and courage. It was a tremendously positive experience I will try to repeat as often as I possibly can.

Thanks to all the love I tucked in this morning, my first chemo treatment was a breeze. (It is, however, supposed to get more taxing and toxic cumulatively, so rounds 4, 5 and 6 will not likely be easy. Anyway, I'll take every good day that I can for now.) Anna was very thorough as she talked me through all my questions—think I'll do that Q&A in the next post—and explained the treatment I'd be receiving.

Watching the chemical juices drip from the hangy bag into my arm, I couldn't help but think about the person I was just a little over a month ago. Manager of a herbal medicine shop and aspiring herbalist, I'd eat three bulbs of raw garlic before I'd even think about taking an antibiotic. I conquered bronchitis in a week this winter with a strong decoction of goldenseal, pleurisy root, elecampane, marshmallow and slippery elm. I turned up my nose at Tylenol. I shunned Robitussin. I made poultices. I was just about as far off the pharmaceutical track as a person could get, and had no intention of ever turning back.

And now, one month later, I have been prescribed Prednisone, Alloperinol, Vicodin, Compazine, Ativan and Yaz. Intravenously, I have received Rituxan, Emend, Aloxi, Decadron, Zantac, Neulasta, Vincristine, Cytoxan and Adriamycin. I have taken them all willingly—enthusiastically, even—because I believe they are going to save my life.

(This is my view from my computer as I type this. She's a different kind of lifesaver.)