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.