Friday, December 7, 2012

I was a 12-year-old, Tiny Tim, method actor.

 I grew up in the Alameda neighborhood, for almost ten years up on Mason in a cozy little rental just spitting distance from a mansion owned by one of the Blazers and then four more down by the elementary school. There were always a handful of holiday parties to attend: the big, family-friendly party at my dad's office, and then a couple in the neighborhood and one or two thrown by family friends. You know the type. Big, frosted, sugar cookies, pigs in a blanket, punch, hot buttered rum for the adults and hot cocoa for the kids. Adults upstairs mingling and kids in the basement with a ping-pong table or an old TV with a Nintendo or "Fern Gully" playing on VHS. I had a hard time relating to party kids I didn't already know and was one of the pesky ones wanting to listen in on grown-up conversations with a handful of olived fingertips. My hands stayed tiny and child-like and I find I still enjoy olived fingers when taking part in conversations about the working environment of corporate middle management or what to do when waste disposal claims your recycling isn't sorted properly when it very well is. I mean, really, do they want you to tie a bow around it? 

I miss neighborhood Christmas parties with their holiday party food and big punchbowls. I miss wearing a big sweater and crowding into the warm home of another family you know to catch up with people you don't see much and stave off the chilly air for the evening. I guess some friends of ours throw this annual holiday thing but I have been too sick for us to go the last two years because both events fell just weeks after I had surgery. In past years it's had a bit of that tinny irony that plagues my generation and makes some of us far too amused with themselves for wearing the ugliest holiday sweater. Maybe I am a wet blanket or a cynic, but I can't understand the appeal of celebrating irony, cheekiness, or other forms of emotional insincerity when the weather outside is so shitty and the days are so short. I think I'd rather dork it up and share warmth with my loved ones and feel a little wholesome for a minute. My youth was perplexing but Christmas was always about giving and spreading those magic feelings of well-wishes and kindness. I didn't realize it then, but I had Christmas like in children's books and family Christmas movies. I figured back then that was everyone's experience but later realized a lot of people barely touch Christmas. Friends who didn't grow up with their houses decorated inside and out like a Department 56 light-up building walk in to my moms' place now and are surprised at the amount Mom decorates and that it is only a quarter of the holiday magic she used to infuse into our domicile. The North Pole Village at Meier & Frank with the ride-on-train, Christmas tree forest and Santa himself set on a giant throne to speak about one's Christmas wishes was the only thing that beat my house. 
For a while in my adolescence and young adulthood I tried and partway succeeded in following God's word in some Christian tradition and found myself thinking more and more about being a good citizen and how that would spread His love. I was terrible at it by my own estimation but was the only message I pulled out of the Bible that made any sense. Christmas was a struggle for me. I was afraid all I had cared about during the holiday season was presents and the trappings of festive secular service and was sure I had been missing something by not including religious observance. I knew all about druidic festivals and celebrations being co-opted by Christians attempting to convert the locals and that Jesus wasn't born in December but I could have sworn I was doing it wrong anyway. I was struggling in some familial relationships and all the good I felt during those early holiday seasons echoed dully in my memory and felt frivolous. I must have read the Bible five or six times through back then trying to figure out what I was supposed to do to be doing life right and coming up with "only love God and all other people" and "if these stories aren't illustrative parables set in a time before refrigeration, antibiotics and condoms, this book makes absolutely no sense in the contemporary context." Trying to be a good Christian confused me and loaded me with so much guilt it ruined my ability to enjoy Christmas. Being emotionally adrift from my family, no matter the reason, took away the glow of tradition and made it just another sleety day in the PNW where I felt woefully inadequate.

Christianity at 100% acceptance rate eludes me and I swim about in a grey area where all the important things from studying the faith and participating in Christian communities stuck but the fantastical deity storyline just won't stick. But Christmas is back. Everything the holiday is supposed to be rings truer in my head than it ever did. My Christian years cemented the humanitarian influence of my hippie-ish parents who were involved in "Beyond War" when I was just a little bug. The effort my parents put in to making Christmas magical well past our Santa years is one of the crazy, wonderful things I love about my family. Making up goofy dances for- and singing along to Mom's cheesier holiday song selections with my brothers are some of the moments of pure, joyful memories of my childhood. Sunday service at the Bridge made Christmas my day of thanks more so than the intended holiday in autumn. I love Christmas. It is Love and thankfulness for the ability to give and receive within our community. It is gathering with others to be a fire against the cold night and making magic by suspending belief in such for the sake of the kids only to trick ourselves into feeling it, too.  It is olived fingers and a kitchen decorated to resemble a gingerbread house and Pennsylvania Dutch egg nog and Mom scolding us for eating a ton of clam dip right before dinner. It is being a blessing to others because you, yourself have been blessed.

I have to admit to an elevated sense of sentimentality this year. There is a good chance I will be having my bone marrow transplant soon and all the way up in Seattle. I have faith that the doctors there will get me through the transplant process as safely as possible and have the passion and expertise to deal with complications resourcefully as soon as they arise. Still, a little voice inside of me that sounds a lot like I do at my most coldly pragmatic says there is still a chance I might not make it and this is it for Christmas. We have been a bit scattered and unorganized the last few years but the idea made me panic and I just about begged people who probably didn't need begging to spend the weekend up at Mom's to celebrate. As much of my immediate family as is on the continent will be there this year, per my adamant request and their shared desire to celebrate together. We have the sole youngster of his generation in our family going to be in attendance and starting to build on his own young understanding of the season. No one is missing out because of work or other plans, and I may even receive my coveted international call from my dad and step-mom. We are all going to be together and it is going to be magic.

Monday, October 15, 2012

weather for sentiment

The rain here has finally started. It smells nice, the sound is soothing, and the constant dampness feels like home. It started a few days ago, after the longest Indian summer I can remember. All us who consider ourselves locals seem to share a mix of refreshment and resignation that the long streak of mostly sunny weather we have had since the end of July has finally come to a close. We are suspicious of such a long bout of truly lovely weather but it's a shame to see it go. Some, like R, are disheartened that we have entered into another inevitable rainy season. Others don't feel like they are truly in the Pacific Northwest without a bit of moss growing on the north sides of their torsos. My feelings are mixed. I grew up in this city-town on the opposite side from where I am living now and a lot of peaceful, contemplative memories from my childhood and adolescence are set against a backdrop of constant drizzle and rain falling in broken sheets across the tops of the trees. I live downtown now, in a residential enough area but most of the trees are still very young and don't offer the canopy that turns rain from a soggy-making bother to diffused-spatter symphony. Like the Inuit and their many words for snow, we have as many to describe rain here and I miss the steady downpour that turns leaves into percussive instruments.

I suppose downtown rain has its charm. It certainly cuts the ominous, muggy feeling that settles in when the seasons know they are in the Northwest and are growing impatient for the changing of the guard. There's no way they will ever get confused and think they are in San Diego just for a year. And so the heavily-treed neighborhoods feel magical in a downpour and downtown feels a bit hassled, but when enough of a deluge hits people are nervous about driving at night and the cacophony uninterrupted by car horns or motorcycles is soul-scrubbing.

Rain tonight is a reminder that it has almost been a year since my first surgery. I walked into last year's rainy season expecting to miss two weeks of work after Thanksgiving but then have my biggest medical issue under control. This time last year, I was recovering from being lightly electrocuted by the "oven" we used to make biscuits where I worked. I thought it was unamusingly ironic that I would be the one to get shocked after making no effort to conceal my discomfort with using a pottery kiln on a table under a tarp out back to make biscuits. Being so far now from that delightful chaos machine of a cafe, I have a hard time believing I willingly stuck my hand in that thing when the rain was dumping like it is tonight. That was my biggest worry: how would I tell my boss that under no certain terms would I use any appliances outdoors in inclement weather, regardless of my job duties? I knew I would recover in time for my giant laser surgery, recuperate at home for a few weeks, and then get back to being a barista/cafe monkey. I was looking forward to gloomy mid-week mornings with E when we would have two hours with no customers and thus plenty of time to do the crossword together and discuss his latest acting gigs. Then the surgery, then the blood loss, then the MDS diagnosis and blah, blah, blah.

The start of our nine months of flat, grey light and perpetual damp precedes Halloween. I loved Halloween all my life but not as much as now; it is my symbolic anniversary with R. Halloween was the night we finally gave up back-burnering our mutual crush and the following week or so (R got swine flu at the beginning of November!) led up to our first actual date. He grumbles and bemoans the rain; I remember him driving me home on Halloween and warming his rain-chilled hand in mine the whole way. It did not rain on our first proper date and we spent hours wandering a historic neighborhood after dinner, talking and laughing and trying to play it cool.

It's finally stopped but the wind has picked up again. The mask of patter is gone and all that remains behind the rasp of young trees quaking is the muffled P.A. at the postal sorting center and the squeal-hiss of air brakes on busses. The rain will return in an hour or two to help me sleep.

Friday, October 12, 2012

mystery elbow

Recovery from surgery number three seemed like it would go smoothly. Sure I had a lot of stitches in sensitive places, but at least I knew what to expect and had been feeling close to great for most of the summer. Bullshit comes in sets. I should know this by now. Just as I am getting sick of my head swimming from painkillers and my guts aching from the stuff you have to take to keep the painkillers from making life rough later (please accept my guarded lavatory euphemism), the elbow on my dominant arm spontaneously develops some sort of cellulitis/arthritis combo. I went to the ER with an elbow that had received no trauma but was huge, red, and nearly immobile. I am between PCPs right now (working it out with insurance), and my immunocompromised body doesn't have time to wait on paperwork when a possible infection is involved.

I waited in the ER for four or five hours before I was seen. It isn't particularly unusual to wait a long while, especially if trauma patients come through. but this felt excessive. Two men situated at a diagonal over the shoulders of R and I loudly complained to one another about the wait repeatedly and tried to make small talk with any women seated alone. A three-year-old who had clearly hit his little wall was shout-babbling and squealing in toddler Spanish at his parents while shoving his hands in every box of tissue strewn about the waiting room. Exhausted and trying to milk the last bit of cold from a tepid ice pack it took an hour to track down, I was led to a bed in the hall by the Life Flight elevator. I was seen by some surprisingly upbeat nurses and doctors who eventually determined I had cellulitis, possibly MRSA because that's what it always seems to be when I have cellulitis. While I waited for my discharge paperwork, a young woman who looked close to my age but was probably 8 years younger was escorted on a gurney directly across from me by several officer's from the sheriff's department. A doctor was getting frustrated trying to find out from one of the officers what she had taken because the officer wasn't looking at whatever sheet he had that apparently had a list of her choice of poisons. Heroin, possibly meth. I didn't know people combined the two. It seems contradictory like smoking a lot of pot and drinking a cup of coffee, but what do I know? I just watched this filthy, writhing creature restrained by the ankles to her bed and moaning. I was managing a lot of ongoing pain sites but this poor girl was truly miserable. I was glad to go home. 

Doxycycline must be taken on a full stomach or unfortunate hijinks in your digestive system will result. An apple and a beautiful fig galette is not a full meal unless you are four. My deepest regrets to the people on the grain mill outlet's restaurant patio trying to enjoy their lunch. I tried very hard to make it out of sight and past the trees, but when that failed I am pleased at least I made it to the storm drain and didn't dally. I always carry my big, orange water bottle so I hope it made it less terrible to witness when I rinsed the drain off so you wouldn't see the evidence on your way home. I heard one of you point me out. I hope you didn't notice me sitting behind a tree trying to call my fiancé who was still in the store. Or maybe I hope you did see me and you saw how mortified I was and you forgave me in your mind for upsetting your Saturday lunch with the kids.

It only took two days for the redness to disappear, leaving just a bit of dark, puffy elbow behind. Still, stiffness and soreness prevailed. My discharge paperwork included instructions to return to the ER for a follow-up visit so I made a plan. I refilled my prescription at the bottom of the hill, took the tram to the main hospital with snacks and tea all set and checked myself in a little before 2pm. I was triaged right away and there were only two other people waiting so I hoped I would be ready to go by 5:30. The waiting room began to fill up once again with people loudly complaining about waiting, vilifying trauma patients, and giving up on trying to control their children. R arrived right after work and almost immediately a grubby man in a wheelchair started shouting across our laps at a pretty, blonde woman sitting alone. I silently begged her to stop encouraging his awkward, booming, flirtatious chit-chat but alas she was as nice as she was attractive and my patience started to fray when the man's chatter became nonsensical after about seven minutes and continued on for what felt like another twenty. I watched "The Pacifier" starring Vin Diesel four times through, including the additional insult of sitting through ten minutes of doofy DVD menu music each time before the film restarted itself. I had the sense to claim my waiting room territory near one of the only power outlets and my perfectly charged smart phone provided blessed access to the hospital's wifi and thus my Netflix account. With my elbow throbbing from a lack of any good resting position and my stitched bits screaming for heavy drugs or a hot bath, I turned to "Freaks and Geeks" to sooth my rapidly-building distress. I was brought to a triage room where I would be quickly seen by a doctor and sent on my way after waiting over seven hours.

The doctor who examined me was worried infection had snuck its way into my joint. A sweet nurse who went on and on about both our names being Gaelic names meaning "strong" blew my vein trying to take a sample for my CBC. I had been wary of the wrist IV because I didn't care for it at my most recent surgery. My wrist ached for days and is still a bit bruised. I should have asserted myself but I didn't and got a puffed-out wrist full of blood and a wad of gauze wrapped tightly around it. I asked for ice to dull the sensation that I'd slammed my wrist in a sliding glass door. Nurse B had told me they call it the "intern vein" because it's so easy to hit and still she popped that needle out the other side and sent me careening past my wall. I didn't even hit it, I just took my ice pack and sat feeling roughed up while I waited for the orthopedist. 

Gentle guy, that orthopedist, and not too keen on dealing with patients who have hit their limit of taxing  stimuli and are in an unmanaged and exhausting amount of pain. Or, I irritated him by trying to plead my way out of a fluid tap and having a bit of a panic spell when I was told it was the only way to be sure bacteria weren't eating their way through my cartilage. There were other patients who needed attention and here I was sort of losing my cool trying to fight the urge to flee over a needle poking me in the elbow. Finally, despite the supremely unhelpful suggestion from the orthopedic nurse that I calm down and breathe through my nose, I channeled my 20-year-old self who watched as her wrist was stitched up following a freak dishwashing accident. I steeled myself, stared at the denim-covered knees I had tucked up to my chest and tried to find my zen spot. I was allowed to examine the needle before it went in because I am not comfortable flying blind, and the initial insertion was nearly painless. Then there was some manipulation of the needle in my elbow that stung and made me feel nauseous, followed by wrenching and suctioning that sent sickening waves of pain down my arm and into the palm of my hand. I yelled a bit and cursed a bit and it was finally over. Both my arms were immobilized with pain and I lay sprawled on the bed drenched in cold panic sweat. Adrenaline lit up all my cells and made my muscles twitch and I babbled for a minute to R about never wanting a fucking needle in my elbow again. 

I was admitted overnight. If my elbow was being consumed by infection I would need to have it surgically examined and flushed clean. The orthopedic team wanted to begin surgery as soon as the results came back. R settled in to the reclining chair in my observation room and I watched "Skins" and set off the IV regulation machine every ten minutes trying to scratch my nose. The last wisps of adrenaline and anxiety were replaced by complete fatigue by about 2am and I slept fitfully until the orthopedic team arrived at seven o'clock to announce the meager amount of fluid they were able to tap and test showed no signs of bacteria and I was free to go. R took the day off work and we went home to rest.

I slept for two days. My library books are overdue, I have missed a number of calls I still haven't returned, and I went into painkiller withdrawal because sleeping through taking them is an inadequate step-down plan when you have been taking my small dosage for a number of weeks or months. I feel sort of better now: I'm at an energy level that is my minimum for functioning outside my bed, but my elbow is as sore and 90% as stiff. I'll be going to occupational therapy next week for some excercises to keep it from freezing up forever.

All this and still no one really knows what happened to my elbow.

Thursday, October 4, 2012

requisite health update

It is probably worth mentioning that the last oncology visit I had left me with news: they are postponing the bone marrow transplant in favor of trying a low-grade chemotherapy to knock back the bad marrow to make room for good marrow to grow, thus boosting my blood cells' overall efficacy. I need my immune system to take care of some of the infectious agents camped out in my system so they are less likely to overwhelm efforts to keep them in-check after my transplant. If my body responds to the chemo drug (60% chance of success), I could be on it indefinitely as long as I keep responding to it. Eventually I will develop a resistance to the drug, at which point we'll have to reassess. The only curative treatment is the BMT, but just because it is curative doesn't minimize the risk of death. That makes the chemo treatment all the more appealing because it will certainly extend the viability of my life through improved immune response and will possibly keep acute leukemia at bay while the medical science surrounding BMTs progresses.

In the meantime, I have had yet another sensitive-area surgery. Like the last surgery, this resulted in excisions and biopsies to determine if I am yet at risk for cancer of the underwear region that have made normal bodily functions excruciating despite the steady stream of oxycodone prescribed to manage the pain. I am high all the time and scared to use the toilet. I also managed to acquire some mysterious cellulitis in my elbow while being stuck in bed. I thought I had strained it by propping myself up too long with the pain medication dulling signals that I had overdone it. Nope, my dang skin is inflamed. No wound or anything to let bacteria in, just an elbow that is stiff, sore and was swollen and red for two days. Now it is still stiff and sore and has limited range, but the swelling and redness has gone almost completely. The ER doctors are treating it like another MRSA infection and I am on antibiotics on top of what I already take.

I recently visited with the Adolescent and Young Adult oncologist to obtain resources offered to cancer patients. I may not technically have a cancer, but everything I go through is similar to being a blood cancer patient. The chemotherapy will eventually help me have more energy than I do now, so I am joining the women with cancer writing group and setting up time to see the physical therapist so I can get my strength up. I may also join the AYA support group, but I promised myself I would go to one meeting and decide after. I'm not much for sitting in a circle and talking about feelings. There are a lot of outdoor- and social programs that start up again in the spring, so I am looking at participating in a few AYA-type surf trips and possibly a meet-up group that sounds way more my speed than a typical support group.

Wednesday, September 26, 2012

writing about writing

I'm having a hard time getting blogging lately. I have so many fragmented ideas it feels like there is nothing in there at all. I typically convert those fragments into creative energy, but knitting and drawing and accessory building just aren't cutting it. I spoke to a (friend? friendly acquaintance? My social dictionary is a mess) fellow cafe haunter and writer. Certainly a more prolific writer than myself. She is one of my favorite run-ins because she is intelligent, insightful, and a little bit intimidating. In my dabbling, I know that I am uncomfortable with having an audience; I am afraid that the social hiccups of my daily life will bleed over and I will be unable to connect. My friend suggests I set goals, deadlines and stick to them to be able to break through that wall. I am taking the advice to heart and starting small: I will write something in my blog once a week. It may not always be cancer-ish, it may not be interesting, but this will be an exercise that will be something to keep me sharp and occupied.

I do what amounts to writing doodles in various notebooks. I have a handy Molskein I consider a journal of sorts: in go snippets and fragments and the occasional stream-of-concsiouness. There's a green canvas book that holds my occasionally-brilliant poetic efforts. There are three or four that also serve as sketch pads or list paper. I'm nearly always writing, even if just in my head. It is a chatty inner monologue going on up there. It is time to commit to the blog as a means to document this cancer-ish process and as a tool to assess and communicate my human experience as a cancer patient.

Tuesday, August 28, 2012

yes, i know you aren't technically "littler" than me anymore...

Growing up, T and I had a very balanced relationship: both far edges of the grey area between adversaries and colluders were evenly stacked. Sometimes he was the typical obnoxious, youngest sibling; sometimes I was the disappointing- or antagonizing, middle child. There have been a few painful verbal volleys, particularly as we both struggled to navigate adolescence and young-adulthood, but when I think of my little brother I think of all the times we've looked out for one-another.

One of my earliest memories of T being my brother and not just some wiggly baby in the house is of liberating him from his crib during nap time so we could play on the floor of our room. We had to play very quietly, but I think we got away with not taking naps for about two weeks before our mom got wise and turned the crib so the drop-down panel was facing the wall.

When we were 9 and 13, our parents divorced. T and I handled the new family turbulence differently, and neither of us particularly well. We fought more, as teenage siblings are wont to do, but it hurt extra when we did because we were the most constant constant each other had. I think I was supposed to be a good older sister and screw up less, help him more, but I didn't know enough about taking care of myself to know how to look out for people who might need me. Still, it always felt like T and I were in this little boat together in a big, crazy ocean... and who can not fight when you are two people in a little dinghy in the middle of the sea? It's inevitable when you are frustrated and don't know what to do. It wasn't all arguing and angst, though. We helped each other through homesickness at camp, teamed up on the hard dungeons in Zelda, devised ways to circumvent our parents, and commiserated when life was feeling a bit too overwhelming.

As adults, our relationship is the best it has ever been. We have become interesting, loyal, clever people and continue to grow as individuals. I get some of the best encouragement from him when I need it, before I have a chance to ask. I am impressed with the man he is becoming and I try to live my life the way I wish I had when I was not a very good sister because I want him to be proud of me, too. We share an unbreakable bond as siblings, and we take that bond seriously. We have an amazing older brother, as well, but T and I grew up on that little boat together.

T is the only relative I have that could be considered as a bone marrow donor. He is my only full sibling, and still there is only a 25% chance he'd have matching HLA markers. He also happens to have the immune system I always wanted. When I had chicken pox for 3 months, he had it for 3 days. Every time I had the flu, I would end up with bronchitis or a sprained rib from coughing; I can only think of a few times that he even had a cold. T didn't miss a beat when he offered to be my donor. My mom let him know as soon as we found out I had MDS, and while I was home trying to think of how I was going to ask him to go through weeks of discomfort so I could have some of his bone marrow, he texted me that he wanted to be screened as a donor. 

We've waited a long time to find out if he's a match. First, I had to get on Medicaid. Next was the long wait for Medicaid to approve my bone marrow transplant. The total timeline there was about six months and when the transplant was approved T got a swab in the mail. The two weeks it took for the lab to get his cheek swab, test it, and compare it to my work-up were the most tense of all. Dealing with Social Security and DHS is a frustrating mess, but I want T to be my donor more than anything. Not just because he has a rockin' immune system, but because it would mean the world to me to know that my little brother is the one saving my life. I would be just as grateful to get marrow donated by a stranger, but T means so much to me I would rather have his marrow kicking all the crazy out of my bones.

Imagine my elation this morning when I read an e-mail my transplant doctor sent this morning that said T is a perfect match!

Monday, August 6, 2012

on living life and paying the price

When will I learn? It seems no matter how much I know my body isn't working the way it did for 28 years, I expect it to possess an untapped pool of resiliency I simply haven't accessed. This is not the case. It used to be -- as I imagine it is for most people in a normal, healthy state in my age bracket -- I could engage in moderate activity for a day, go to bed tired, and wake up refreshed the way one does after a well-deserved sleep. I'm not used to this broken body. I expect adequate sleep, water, and healthy fuel will be enough to recharge and go forth into the next day but that belief proves to be founded in hope and indicate that a bit of me is living in the past or far, far future.

I went to an amazing wedding this weekend. R's best friend married a friend with whom I had been close as a teenager. Their wedding took place at an idyllic hot springs resort in central Oregon surrounded by trees, rushing river waters, and people who love them both deeply. The meadow ceremony was followed by a meal that hummed with joyous conversation and a campfire reception that carried that joy well into the night. It was perfect in that it was full of love and celebration and was executed with the wry, merry way we all expected from the couple. I was honored to be present and had saved up my energy all week in order to handle what I knew would be a bigger expenditure of emotional and physical fortitude than I had endeavored since my first surgery in November. I could feel the sun and trails sapping my strength every minute faster than I am accustomed in my modest, small-sphere existence, but the joy of being present was enough to eclipse my building fatigue. After laughing and reconnecting with friends I found myself alone with the last stragglers and then just R, who helped me put out all the last embers and wander back to our tent.

Eight o'clock in the morning pulled me from a fitful sleep with something so much more than the mild hangover I was expecting. I don't recall drinking to excess, and certainly had more alcohol in my system on my birthday back in May. The morning after my birthday was met with a mild headache and a bit of malaise that was cured with a large glass of water and a healthy breakfast. The morning after the wedding was a different story. Taxing my body with heat, dehydration despite the gallon or so of water I guzzled, wandering around the wooded trails, and a celebratory amount of alcohol was far more abuse than I can handle. I found my limit, crossed it, and did not recognize it until I had smashed into a wall miles beyond. I could barely move without fear of pitching over; all my limbs were weak and shaking, my head and middle felt inside-out and scalded. Every action required concentration and still took far too long to accomplish. R was gracious and kind in the way he always is when I am feeling out-of-sorts and opted to start our three-hour drive home before eating breakfast. We nursed blue-flavored sports drinks all the way home, and he let me nap next to him as he manned the helm on an empty stomach.

Once home, I was still shaky. Not just weak, not just tired, but quite literally shaky from fingertips to toes. I climbed onto my sweltering bed, sipped pitifully on cold water from the refrigerator, and slept most of the afternoon and evening away. I woke up this morning feeling sucked dry, drained of anything that could power ambulation. I chatted on Facebook with a friend for two hours while trying to will myself into shorts so I could walk across the street for a cup of coffee. Once there, I realized too late that I wasn't ready to interact with other humans and irritated the new employees at the cafe with my inability to succinctly place my order. I think they assumed I was hungover or stoned and I wished the usual pair of long-time baristas were there to glance at my glazed face and know and treat me gently and insist on bringing my drink to my table without me even having to open my mouth to order.

Back on the floor of my bedroom now, feeling pathetic, wondering if this is a preview of what life will be like when I am home from my post-transplant month in the hospital. No one is sure yet when that will be. The transplant seems to hop miles off every time I think it is getting closer. I heard from one of my doctors that the testing phase has been approved by Medicaid so the ball is rolling. My brother should be getting his swab in the mail any day now. Maybe he will be in that 25% and be a match and this ball will roll quickly. The 75% likelihood he will not have all the same HLA markers in all the same positions mine are says I will probably find out in somewhat short order that I really will be on Vidaza for months and months while they comb the international registry for a match. In any event, if I have to feel as awful as (or worse than) I have in the last 36 hours for months before I start to feel better but then get to have my own amazing wedding with R, and spend any multitude of days on the river with A & K, and watch my nephew one day graduate college, and see both my brothers marry their beloveds, and travel the world with my friends and fella, and carve out the life I so badly want, it will all be worth it. Just as it is worth it to feel like dried-out roadkill for two days in order to witness two amazing humans begin a marriage that is sure to be blessed and full of love.

Tuesday, July 10, 2012

interesting turn of events

Chemo has been cancelled.

Vidaza has been cancelled, at least. I am under the impression there is some type of chemotherapy right before the marrow transplant, but there will be no long-term treatment. There will not be six months to a year of one-week-a-month infusions and there will be no PICC line. There will, however, still be a bone marrow transplant. I am sorry for all the times I panicked or pouted about having any of my three marrow biopsies because someone out there has volunteered to go under anesthesia and have their hip tapped like a sapsucker taps a tree. Six extractions in one go certainly must make the donor feel pretty much kicked in the hip by a horse. I will now stop grumbling about my hip still being stiff from last week.

My rational thinking tells me that it is good news that we are skipping chemotherapy. Marrow transplants apparently tend to yield better (less complicated or lethal) results in patients who have not had a lot of treatment or blood transfusions. Nonetheless, I am quite concerned with MRSA or graft-vs-host getting the best of me before I hit the 100-day benchmark and -- regardless of the cliché in phrasing -- I am too young to die. I saw the chemo months as my ticket to a little more time before having to truly stare down mortality, but Medicaid came through and there is now no financially- or medically justifiable reason to wait.

The social worker dragged a marrow transplant survivor into the exam room today. She wasn't much older than me and remarked that there aren't a lot of young people in the hematological malignancy clinic. She had better things to do than stand around while I said nothing of much consequence, but came back a few minutes later to jot down "Oncology Youth Network" on a piece of paper she handed me with a suggestion I check them out. They seem to be some sort of meet-up group or support network for cancer survivors in their teens and twenties. I'm almost 30 and have MDS, which is almost-but-not-really cancer. If I go straight to bone marrow transplant, never have chemo, and never get to the point where my disease flips the switch and becomes cancer, I don't know if I count as a cancer patient or later a cancer survivor. Still, it's nice to think about a group of people who understand the process, who are not over 60. The woman I met today mentioned how alone and "other" you start to feel the deeper you get into the treatment process. MDS makes me feel isolated from even the cancer patient/survivor community. I'm too young to have any peers nearby who also have this purgatory diagnosis.

The calendar now looks a bit hazy. I'll meet with the transplant doctor in a week or two, my younger brother will be typed and screened as a donor, and if he is not a good match a donor from the registry will be tracked down. If my brother is a match, I will have to make him some delicious pancakes to thank him for the weeks of awful hip pain he will have to endure. Provided I make it through my first year with no problems, I will make him the best pancakes every year on the anniversary of my transplant because I speak love through gifts and food. Following two to four weeks in the isolation unit, I will spend 100 days closely watching my own health while the marrow starts to make blood for me and I visit the doctor multiple times a week for maintenance. If I make it those first hundred days without serious graft-v-host or infection problems, I probably won't die from either. If I make it a full year, I will probably live a pretty normal life. Here's to hoping.

Friday, July 6, 2012

core drilling

I have had enough of anxiety. Tuesday was my third bone marrow biopsy, but instead of being calm and confident that it was not going to kill me, I was overwhelmed by intense feelings of dread as memories of the last two core drilling expeditions swelled to massive size in my consciousness. I repeatedly re-lived the sensation of a hole being punched into my hip and the gooey insides of my bone being sucked out: the first time as if in a disjointed, confusing dream; the second more akin to having some sort of cybernetic device installed in my hip and thigh. Sedatives added to the surreality and ultimately made the biopsies possible. I am typically quite pain tolerant, but the exception to the rule is nearly any medical procedure I am unable to watch. This makes me a nervous bone marrow biopsy patient and terrible in the dentist chair, but a champion at IVs, shots, stitches, and weird toenail surgery. Tuesday was spent in agonizing panic over the impending hole punch and the subsequent three weeks of a stiff- and painful goose egg on my hip while I waited for five hours in the chemo galley at the blood cancer clinic. Excuse me, in the infusion room at the center for hematological malignancies. My digestive health specialist does not like me to call him my "butt doctor" when I am secretly mad at having my tender parts poked, so I imagine the kind people at CHM have similar sensibilities. There was a bit of confusion as to the actual time of my appointment and whether or not there would also be chemo involved, so there I sat for five hours with my mother as we halfway chatted next to people attached at the PICC line to bags of fluids of all manner of color and viscosity. By the time I was on the table with the NP assuring me he was using the best equipment and had the best technique, my cortisol levels were certainly through the roof and every bit of my self was in full panic mode. Sedation didn't exactly take, and the new-and-improved biopsy method included some sort of drill that made a horrible sound unhelpful to one already inescapably on the edge.  I felt the effects of the morphine and anti-anxiety drug kick in about one half-second before the marrow sucking was complete. Waiting in between administering sedation and beginning the procedure may have been helpful there.

The anxiety needs to be wrangled. The first step is to strive toward serenity and joy in my daily life. While that feels trite to say out loud, I recognize that I cannot heal well or move through discomfort if my emotional state is constantly heightened by conflict, fear, or frustration. I have an easy time finding good or beauty or humor in most situations, and I need to broaden that skill to include recognizing and expanding joyful moments and opportunities for quiet, peaceful thought.

Tuesday, June 19, 2012

big ol' gif round-up

Just when I think I'm making good headway on getting on state health insurance:

Those days I am too tired to do anything, but have just enough energy to be aware of the nothing being done:

Finding out I have been simultaneously approved for and denied SSI:

When my darling fiancé makes jokes to lighten the mood at oncology appointments:

Waking up in recovery after surgery:

My doctor tells me I'm having another marrow biopsy/an intravenous catheter/any sort of rectal exam or imaging:

Walking back to an exam room, nurses ask me how I am doing:

...but every third or fourth visit, once the exam room door is shut:

The days I get to go out and see my friends, even

...feels like

Thursday, June 14, 2012

pictorial happy

• Adventures with friends
• Oregon coast
• Make'sy-create'sy
• Dog friends and respect for their anonymity
• Sea birds who mate for life
• Self amusement
• Living a beautiful city
• Escape to the fairy tale land that surrounds my mom's house

Tuesday, June 12, 2012

medicine brain

When all this is over and I'm no longer exhausted from anemia; infection; chemo; pain; and lack of sleep, and am finally able to get through a day without any thought to pain management, I am going to be so very awake. I hope I can find a way to make good use of all that energy and clarity. I am excited for that day I am out of this constant fog because it is going to taste exactly like sitting on the dock at camp late at night when it is just cool enough for a hoodie and you fill your lungs as far as they can take it just to have some of that magic in you. I try to simulate the feeling at the beach or up at my folks' place in the woods, but chemicals and fatigue keep turning cool air off the lake into warm air just before a rain.

forget brave

There is a collective agreement within my support network that I am allowed to feel puny and scared. I appreciate this sentiment because I have no choice in the matter and the experience is surreal.

I am used to feeling tough. Brazen, strong and independent. Maybe those moments still come but they seem muted somehow, like voices on the other side of the door or breathing through wet wool. I am not used to feeling small and nervous and bug-eyed. I have been scared before, but in time it always turned to simmering indignation that cooled or became a head of steam. Now I exist in an ever-present state of uncertainty and fear that becomes a sideways response to, "how are you? You look great!": Thank you, but I'm feeling kind of tired and puny lately.

I am very glad my people let me feel that way and do the brave stuff for me.

Wednesday, May 23, 2012

this day here

I feel so small today. Tiny bones and tired muscles and tissue-paper lungs. Walking from the train with my lunch curled up in my arm I was a wisp trying to be large enough to breathe. So far this week I have been filled to the brim via most of my orifices with barium or contrast fluid, sacrificed a bit of blood to lab vampires, had my guts and lungs viewed through various magic mirrors, had so very many strangers examine/poke/assault my private areas, and watched "Law & Order" and "Friends" re-runs for 5 hours while curled in the fetal position on an ER bed. It is Wednesday. Tomorrow is pre-op for butt surgery next Tuesday and then I refuse to do anything medical but take my antibiotics all weekend.

I used to be tired a lot. I worked hard, so it seemed reasonable to be immobile all evening after work and through most of the weekend. I fell victim to infection easily my whole life, and that often contributed to my fatigue. I did so much to get tired, though. Work was eight-to-ten hours a day, I was learning to surf, I walked everywhere. Now I wake up tired. Surgery was almost seven months ago, and there is just no bouncing back. The trauma of it has left cascading maladies in its wake and shone a light on Myelodysplastic Syndrome I didn't even know I had. My time is now marked by doctor visits and lab tests and meetings where I beg Social Security and DHS to help me keep my head above water just enough to get through my impending bone marrow transplant. Even without influenza for most of May or some mystery mass that make bowel evacuation about as fun as sitting on a wrought iron fencepost, I would be exhausted from my full-time job as an almost-cancer patient. I haven't even started chemo yet.

Today I went to DHS's Aging & Disability office to interview for something called presumptive Medicaid. Bronchitis from the flu made me winded and gave me a breathy, Rory Gilmore voice that I hope aided my cause. How can anyone deny medical insurance to a 3/4-sized Rory Gilmore who needs a bone marrow transplant? On my way to the MAX to go home, I picked up some tikka masala and a soda from my favorite food cart and I felt as though I might twirl away, into the air like a puff of smoke while I waited for my order. So small. So broken. So at the mercy of kind, research university doctors and faceless, judging state bureaucrats. I signed over my life laid bare to the bureaucrats today in hopes they would understand this uncommon diagnosis of mine and know that if I could work and pay for my own insurance I surely would. I'll work after my transplant, go to school and be some sort of person who makes enough money to pay for her own- and some random stranger's insurance if they will just help me pay for that new bone marrow that's not covered by my OHSU discount. My lunch was ten times my imagined size, and as I walked home from the train strangers in the street saw a folded newspaper, a can of orange Fanta, and a large container of Indian food being escorted into my building by a non-corporeal consciousness.