Wednesday, July 31, 2013

Emerald City of blurry eyes: day 12 (50th post!)

My eyes are blurry. I think it's because of all the dilaudid I am on. I have a PCA of the stuff and that little button gets me through the day and helps me sleep at night. Mucositis, progesterone cramps, body aches all plague me constantly. It is Day 12, though, which means I am about halfway through the hospital time, and nearly to engraftment. Once the marrow has engrafted and starts making me blood cells, my pain will subside and the fatigue that has a grip on my body will begin to lift.

There's not a lot to report today. My platelets and hematocrit are low enough to likely require a blood transfusion. I have already received two platelet units this week, but transfusions are normal and expected. The sores in my mouth are starting to heal, but my throat and stomach are still raw. My hair is falling out. I buzzed it all off my head because it was starting to look patchy and now it looks buzzed and patchy which I think is a slight improvement. I have to wear a hat to keep warm. Who knew being bald would be so chilly?

The window in my room is massive and lets a lot of light in. I can see boats on the water from my bed, past the backside of the new Husky stadium. When the sky is very clear I can see the Cascades on the horizon. I love being so high up on the seventh floor because the gulls hover at this height and swoop past my window all day. It's like being in a giant, HEPA filtered nest.

I attended arts & crafts time with my mom today. We made shell-covered picture frames and mirrors. I think Mom should put the picture she took of me making my frame in my frame. Meta, baby. I have been knitting a bit, as well. I made myself a cute cotton hat and am working on re-working the baby socks I messed up a while back that I am making for my nearly-here second cousin. It's hard to concentrate because I am always tired or have shaky hands from fatigue. It's nice to be productive, though.

Some cards and small gifts have shown up in the mail lately. Thank you! I love reading the kind notes from my friends and pinning the cards to my cork board. They live next to the chart that records my blood counts and another that records the number of laps I have done around the ward. I have walked a little over three miles! It's funny what gives me joy these days. Not surprising to love getting mail, though. It's a lovely feeling to have concrete proof that people are thinking of me and sending positive vibrations through the universe at my healing body.

The strain on my eyes is giving me a headache, so that's all for now. Thank you for your well wishes and know I love you all!

Tuesday, July 16, 2013

Emerald City of the Drink of Despair: day 0 - 4

Ah, that moment when you reach an acceptable stopping point on a project, only to review it later and catch grammatical errors that are too late to fix but not sly enough to go unnoticed. I hope you will look past. This video has not been optimized for any devices. It has been amusing to make. Please forgive the crampy writing...my brain hurts. Next one will be so much better.


video




And every chemo pill I swallow makes me feel like Dumbledore trying to get Salazar Slytherin's damn locket.


Saturday, July 13, 2013

Emerald City of Chemotherapy Conditioning: day 0-6

Today was my second day of Busulfan. I have two more days to go and then I go to the hospital. Two days of Cytoxan and a day of rest and then it's DAY ZERO, Y'ALL.

My blood counts were already super low yesterday, so I spent most of today hooked up to a super-concentrated red cell product. Donor blood, B neg. Hourly blood draws to check my chemo levels, napping, and chatting with my mom. It really wasn't all that bad. The infusion room mattress was Tempurpedic and there was cold ginger ale down the hall for stomach upset. I had a bit of a swerve-y stomach today, but mostly my anti-nausea drugs and Busulfan all just made me real tired. I think tomorrow might be rough. Walking to and from the restroom always makes me feel like I've speed-walked a few miles and hopped right in to bed without cool down or stretching, out-of-breath and sore all over.

My mind is constantly begging me to let it doze today. Right now is no exception. I can't focus on anything, not even television, not even sitting upright in the bath. Not even writing this blog. But I guess even that has merit as far as documentation goes.

I'll tell you about some things of which I fond: funny, friendly nurses; medical staff, family members, and friends who understand what a mind-fucking experience this is and show me extra love and never mind when I cry a little; ginger ale; five kinds of anti-nausea drugs; ginger ale and Japanese soda fizz candy; junk TV and Gilmore Girls; sleep, naps, nodding off; beautiful summer days where the sun sparkles off the water and almost hurts my eyes from six floors up; chicken with broth over rice; paper letters in the mail; dreaming big, reasonable dreams.

Good night, y'all. I love you!

Thursday, July 11, 2013

Emerald City of getting some tough outta this catheter: day 0-8

Ladies and gentlemen, I am proud to introduce you to my Hickman line:



If you look closely you can see where it threads under my skin and over my collar bone. From there it dips out of site into my jugular vein and down into the superior vena cava and ends just before the valve there. I was squeamish about having it put it and I am still a little nervous about when I will need to flush it with saline and heparin on my own every day, but for now it is pretty much under the jurisdiction of my transplant team. I wear an occlusive bandage over the port opening that has a rectangle of anti-infection gel that will need to be changed once a week, but this is another thing I can let my nurses do for me until I am released from the hospital. The two-prong ends are color-coded to determine the prong's proximity to my heart. I forgot to ask why. It reminds me of a snake's tongue, so I am considering naming it Harry after the famous parselmouth. 

Getting my line put in made me feel a bit more tough than I have been lately. My deep periodontal cleaning Wednesday went a much more smoothly than Monday's as a result. Thank goodness... it is mortifying to be a grown woman with a serious dental anxiety problem. 

After a couple weeks of non-stop clinic action and restless sleep, I finally get a single chill day today. Chill is relative, I guess. Today is Chemo Class. I have been taking my antibiotics and liver protector and tomorrow before class I will get my anti-seizure medication that I will need to take 30 minutes before I take my Busulfan and then we talk chemo with my team nurse. I'm pretty sure I get my first dose then, but it might not be until Friday morning. Friday is the start of crazy blood draw marathons, where I have a blood draw at 7am, take my Busulfan and then continue to have blood draws pretty much once an hour until 3:00 so they can track the my metabolism of the chemo drug. Saturday looks about the same, and I think Sunday. I check in to the hospital on the 16th and that is when I will switch from oral chemo to an infusion drug called Cytoxan. Wow, it just sounds dreadful! It makes me think of boutique rat poison for psychotic, murderous wives. 

I've been enjoying my time with my mom this week. She lets me be quiet and contemplative when I need it, makes sure I eat something healthy other than oatmeal all the time, encourages me when I am crying or feeling uncertain, supports my post-transplant life goals, and is quick to let my punchiness after a long day throw us both into giggle fits. It's too bad my transplant is the reason it is just the two of us for a little while, but I am really glad she is here. She is an important member of the support team that I have and treasure all my heart. Pretty soon, her partner, my brothers and their ladies, and my dad will all be here to support me and T, my amazing donor-bro. I am blessed to have these people! I have been receiving lovely texts, letters, and emails from all sorts of friends lately, so if you are one of those please know I hug you with my mind every time I hear from you. I can't wait to get back to you all for river floats, campfires, dress-up dining out, dinner parties, corn hole, deep chats, and next summer's Color Run!

MY ADDRESS HERE, FOR GOOD:
525 Minor Ave N
Apt 311
Seattle, WA 98109

Tuesday, July 9, 2013

Emerald City of imminence: day 0 - 10

It looks like I did some insomnia rambling the other morning, and I don't know that I made the sense I was trying to make. Oh well. It's a start. I have had furious writer's block lately, mostly due to exhaustion and a little bit overfull of feelings. Not everything I have been feeling or thinking has been negative or down; there has just been a lot of it. It's hard to tease it apart when I'm too tired to look at screens or paper. Yes, this is just reiteration of what I wrote last time, but I hope that with enough tries I can get it right.

Today was Hickman line day. A Hickman line is a central port catheter that is threaded under the skin on one side of the upper chest, over the collar bone, and into the jugular vein. It makes for easier blood draws, infusions, and anything else one might need an IV for. The line is named for Dr. Hickman, who invented a little silver-infused cuff on the catheter that prevents infection by encouraging the patient's body to build up a bit of tissue around the cuff near the surface of the port entry. When they pull the line at the time of removal, the cuff sometimes detaches and stays behind as this little inert bump under the skin.  For now, I have a forked tube sticking out of my chest that requires careful attention, but at least I won't need to be stuck with needles at all for the rest of my time here. I was consciously sedated for the procedure, but I remember most of it. I'm glad for the memory because it is an unusual experience but with the sedation the pain and pressure of it were really no big deal. I think I dozed off for a little while toward the end. The most painful part was the burn of the numbing injection (lidocaine?), and there was and still is discomfort from the vessel dilation. The best bit of the day was meeting Jim the radiology tech. He was a head designer for Nordstrom for twenty years before deciding to pursue a career in the sciences and looked, spoke, and had the mannerisms of Tim Gunn. If I had met him after the sedation kicked in instead of before, I would have been absolutely convinced Tim Gunn was in the room, making sure the catheter was dropping into the right vein.

To some of the point I was trying to make in the other post: please tell the people you love and like that you love them and why you like them; say something nice to a stranger or server or customer service worker; show as much kindness as you can, as much as you can, even if it feels awkward or silly or uncool. I hate to sound preachy, so if I do I am sorry. I just want to make sure that no matter what happens (and trust me, I am counting on this transplant to be a success) I get this idea out into the universe. It's nothing new, but it is one of the most important concepts to me, something I strive for with varying degrees of success, and something I think we all can benefit from. Thanks for listening. I love you guys.

Monday, July 8, 2013

Emerald City of brain organization: 11 days to day 0

When medical events pelt me like sleet, I keep my chin tucked to my chest and try to move on autopilot. I've been in a blogging rut lately, thanks to the madness lately. I have ideas but can't flesh them out or separate them enough to see them clearly. This morning, I will start with an update:

I got the call to come back to Seattle a scant four days before I was supposed to arrive, before my Medicaid was done transferring to my new state of residence, six weeks into living half out of my suitcases and being laid up and feeling rotten. The Medicaid spend-down stunting my active status gave me an extra week of delay, for which I was grateful because I had no way to get everything together in time otherwise. I had another biopsy on Tuesday and an angry migraine Wednesday and after a few days of R&R I feel better. Almost ready to go. This week I will finally get my Hickman line and a few days later I will start my chemo. The transplant is scheduled for the 19th. When I am done in the hospital, I will move into a long-term patient housing apartment with its own kitchen, washer/dryer, actual bedroom, and access to a rooftop healing garden. It'll be August by then and a good time to hang out on the roof, in a chaise lounge with a book, hanging baskets and vine plants for shade.

My eyelids are finally heavy, so I'm going to save this and come back later. I promise.

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It is twenty-four hours later, just a little after 12:30 am. The obvious slacking off that has happened here in this blog is due to a number of factors. I have been overwhelmed the the number of administrative, housekeeping, and self health tasks under my responsibility; I have been having vertigo and migraines and random waves of nausea, all of which can be caused- and exacerbated by the stress of being a mostly in-bed patient who suddenly has to turn the slow-moving wheels of her life into speedy little skate wheels; my mind is a dense, wooded landscape in which there are widow maker branches, bitey snakes, tangled underbrush, a cool stream off into the distance where I want to set up camp, and a bit of sun here and there that filters through leaves to make haloes around important-seeming trees. It is hardest of all to talk about my mind forest, to make sense of it all in order to convey to my loved ones that it's not exactly fear that has me quiet, but a lot of thoughts with no real trail. I want to sort it out while I still have a few peaceful-ish days to think it through. There are notions I want to share, part to amuse, and part to try to keep my arrow true enough to compensate for a little shaky aim.

I want to talk to everyone about trying on an attitude of kindness and gratitude. Being more kind, polite, thoughtful. Telling people you notice when they are doing or expressing or anything in a way you like. "Thank you for the tea, Charlotte. I appreciate the way you always make sure there is a saucer down for the tea bag." "I'm glad we had this day together, Bertrand. You are good company and the way you talk makes me think and smile." "Thank you, dog friend, for putting your chin on my lap. You communicate your needs in a way that is both obvious and sincere." "Thank you, me, for tidying up the apartment just because and not because you must hide the shame of your messy ways from your friends." "Child family member, you are doing a great job expressing yourself through your crazy dance. Thank you for being mindful of our faces and privates while you flail about." I am serious about this. It's so easy to look at someone and see what they are doing or how they are being in some fashion that is not our personal ideal. It's even easier to look at a situation we are in or are observing and weave blinders out of the elements that are not readily pleasing, stimulating, or comfortable. Those are the elements that lay groundwork for experiencing joy, satisfaction, and pleasure, none of which make it through the negativity blinders. We don't always know we are doing it, but left unchecked we allow ourselves to miss the ephemeral moments that soften and warm our experience as mortal beings in this hazardous environment we inhabit. I'm just a new thing on the planet at 30-years-old, but life so far has taught me that earnest kindness and gratitude over time enhance our daily experiences and can take the razor-sharp or grit-rough edges we bump into and turn them into discomforts or tolerable pains. I want to talk more about this another time when kava tea and sleepiness aren't here to make me get all Super Granola Lady on you. Another post, maybe tomorrow.

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Adam Corolla and Dr. Drew Pinski were a reliable source of even-handed, realistic advice on sex, relationships, dealing with past- or on-going trauma, health concerns, and just about anything else you wanted to know about but weren't sure who to ask. Back in the mid-late 1990's, their radio show guided a lot of youth (and adults!) within syndicated radio range through confusing, embarrassing, scary times and gave us all information our parents and gym-teachers-doubling-as-health-teachers either didn't have or didn't want/know how to share with us. I was glued to my little clock radio from 10pm-midnight, Sundays through Thursdays all the way from eight grad through high school just to listen to Loveline and get the scoop on what was really going on with safe sex. Just by listening to other callers' problems, I learned I should not sleep with the 18-year-old trying to get into my leotard when I was just 14; I should know how to properly put on a condom because a lot of guys my age didn't; neither time I was raped were my fault, no matter how the perpetrators tried to convince me otherwise or how our peers responded by calling me a slut; if the people I date keep treating me poorly, I need to stop and reassess, work on myself a bit, and then date someone less "exciting" and he will probably/hopefully treat me right. All this from a call-in radio show hosted by a fairly juvenile "everyman" and an intelligent, kind, board-certified physician and addiction medicine specialist.

Adam now has his own podcast network, including a show he shares with Dr. Drew to "get the old band back together." Most of the time I love to hear their banter and the way their relationship has evolved, but occasionally it is glaringly obvious that Adam (and to a lesser extent, Drew) has become pretty out-of-touch with the way things really are outside his fancy house in Glendale, CA. I want to talk more about this another time when I am more awake.

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One more thing I want to make sure I address is how blessed I am to have amazing people in my life. My family, friends, former bosses and coworkers, even children of acquaintances have been keeping my mind on the stream and the sun and out of the tangles of brambles and brush. But first, sleep.