Monday, December 29, 2008

Nearly 2009

It has been too long since I wrote in this space, and it is hard to know where to start. Sometimes I think I worry too much about the family or the strangers or near strangers, friends of my parents, who read these words. Other times, I think that I hide behind that worry so I won’t have to work through my thoughts and feelings. And other times I choose to blame the fact that I am almost never alone. But tonight I am alone, and while my ears are screaming in the silence (shrilly telling me my short night’s sleep and pre-dawn arrival at the airport and cross-continental travel was too much for my tired body), there is a peacefulness to my solitude that has an almost miraculous quality.

I am in Vancouver, visiting Julia and reacquainting myself with the work here. It feels like the first time I have made a decision and done something totally for myself and made cancer answer to me. It is a wonderful feeling. I will be here all week, ringing in the New Year Canadian-style—whatever that means—and enjoying reconnecting with my partner.

I am also determined to figure out how to access the kind of in-between treatments check-ups and medical support I will need here if I am to fulfill my wish of resuming the work I started here last spring while continuing treatment at Sloan every few weeks. To that end I made some phone calls today, and managed to speak to 3 people at the BC Cancer Center here in Vancouver, two of whom were polite and varying degrees of helpful. I succeeded in not getting overly angry about the obstacles to getting a simple blood test. So far the roadblocks seem like standard red tape stuff, and not the truly absurd like what I encountered last week in Ohio.

On Friday I was feeling light-headed and low energy; sure signs of low hemoglobin (red blood cells). My doctor at Sloan and strongly suggested that I get my blood counts checked on Friday anyway, and I had a prescription for a simple blood test, a “cbc”, or complete blood count—the basic test to see how much blood you have (how many red and white cells, how many platelets), a 30 minute test that I have to assume is requisite knowledge for any phlebotomist. On the recommendation of my nurse practitioner I looked up Quest laboratories in Columbus. Quest is a national blood-testing company that my insurance covers and where I went once while in Florida to have blood drawn and mailed to Sloan for a special HAMA test; an experience not without its setbacks, but also quick and efficient. My experience in Columbus had utterly soured me.

First of all, they only have locations near the outer-belt of Columbus—apparently only suburbanites need routine blood testing and don’t want to have to go to the hospital every time. I chose Dublin, about a 20-minute drive from my mom’s house, because there were 2 locations there, so I figured we had a back-up in case one was super busy. Well, neither was busy at all because apparently they decided to close the day after Christmas—not that any such information was posted on the website, or at either location, for that matter. Luckily, a doctor’s office with a nice receptionist was open next door, and she gave us a pre-printed flyer with all the Columbus-area locations and phone numbers and hours (minus holiday closures) listed. I proceeded to call each and every one, only to get voicemail messages listing the same information as there was on the flyer. Convinced they must all be closed, I was nearly at my wits end, but trying not to yell in the quiet waiting room.

Mom looked them up in the yellow-pages and found an additional location listing, so I called and, low and behold, found a human at the other end of the line. But she closed in half an hour and had and attitude. She said I couldn’t go there if I wasn’t a patient of an adjoining practice, but insisted that a near-by location was open. Not having any other ideas, mom and I set out from the unfamiliar northwest side to find the outer-belt and head for the far east side. In the pouring rain. Did I mention is was raining? Pouring. Not safe for driving. Luckily, I called again and got a person this time instead of the machine. She confirmed that they were open and gave us directions that probably saved us an hour in that weather.

We finally arrive at the eastside clinic and I am seen right away. There are several questions about my diagnosis and prescription, but the phlebotomist let’s the lack of a “diagnosis code” slide and decides to draw my blood anyway (presumably in the spirit of Christmas). It takes two tries to find a vein not too scarred to let a needle in and my platelets are clearly low because even the dry stick bleeds, but hey, I have succeeded in getting the test. I should know shortly if my trials are over for the day or if I need to find a hospital to give me a transfusion and waste all evening in the hospital like I have wasted all afternoon in pursuit of a simple blood test. But no. It is not to be.

I ask the phlebotomist when I will have the results of the test, and she say’s probably not ‘til Monday, since my doctor’s office is presumably closed over the weekend. It is Friday afternoon, and despite her speculation that they are probably closed today, I know very well that the PDH does not slow down their constant attack on cancer just because Santa is in town. (I missed my goody-bag from Santa by one day this year!) I am confused, and ask her if she can call me directly with the results of the test as soon as she’s done. She explains that she’s not allowed to touch the machines or the blood there. Oh no, this blood is going to Cincinnati. A courier comes after 5pm and takes the blood to Cincinnati (a 3 hour drive from there), where the blood will be tested that night and the results faxed right away to my doctor—but by then their office will be closed. In the shock of this absurdity and the anger boiling quickly up from great depths within me, I stop talking and walk quickly out of the clinic, dragging my confused mother along with me before I can explain because explaining would mean exploding with rage—and what was the point of unleashing such a scene there in the clinic for the hapless, impotent phlebotomist?

Just to be clear: I was in need to a blood count so that I could find out if I needed a transfusion that day—not some time the next week! By Monday I would either have rebounded and made up for the missing blood, or, maybe, had a heart attack. Getting the results on Monday is useless and absurd.

When I got home I called my nurse practitioner back in New York and, after letting off a little steam, came up with a plan to have her call the clinic and have the test results given directly to me. Miraculously, she got through to the manager in Cincinnati and sent her a modified prescription allowing me to get the results myself and got me a number to call later that night for my results. They weren’t in when I went to bed at midnight, but when I woke up having to pee at 6am they were, and they were handed over without a problem. I was not in need of a tranfusion, but my hemoglobin was very low; 8.2 and anything lower than 8 is call for a transfusion. My platelets had dropped from 61,000 on Monday to 41,000; normal is 150,000-400,000, but unless you are bleeding transfusions aren’t needed until you drop below 10,000. So in the end, it was a relief. But as my uncle said the next day, if that’s everyday stuff, god help you. He had asked me about my new “setback” and I was very confused by this: I am hardly puking, I feel good, I am on a break from treatment, radiation is over—things are looking up. The only problem is, our healthcare system is defunct. Why on earth would my blood have to travel halfway across the state for a simple blood test? How is it possible there isn’t need or possibility of such a lab in the capital city, second largest metro-area in the state? Absolutely absurd.

Someday soon I will muse about the weird intimacy of radiation therapy, but for now I am content to release my discontent about blood work.

Sunday, December 14, 2008

Cookiesforkidscancer.org

Speaking of Christmas gifts and lethargy--brain lethargy, that is--I keep forgetting to tell/remind you all to buy cookies for people! I am not the biggest fan of the site name--cookies for kids cancer, it sounds like we are cheer leaders for cancer, but really we are raising money for neuroblastoma research. Lifesaving--possibly my life--new treatments that can't get funding from the usual sources because there aren't enough of us patients (cute as we all may be) to make any promise of future profits for bigPharma. So it is left to those of us actually fighting this disease in ourselves or our families to raise the money to save ourselves. Fucked up, right? But this little group, called Band of Parents--go to bandofparents.org for other fun gift ideas--managed to raise a million dollars in the last year to catapult a humanized version of the mouse-cell torture, I mean treatment, that kept me clean for two years. The new version will help more kids because there won't be an issue with developing, essentially, an allergy to the cells because they're from humans, not some other species. It also appears it will be more effective. And it's coming to a cancerward near you by the fall of 2009!

That is, IF you all go buy some cookies for kids cancer. I bought some last year, and they are delicious. I gave to my co-workers at the Union to thank them for all of their support. This year I might just take my friend Sam's lead and buy them for myself. I won't lie, they aren't cheap, but almost all of the money goes toward research, and it's not any more expensive than getting cookies delivered commercially. Plus, it's tax deductible. So there you have it, no excuses, GO BUY COOKIES!!

Lethargy

That's my word for last week. I slept through most of it. Poorly, at night, from pain in my shoulder and right chest, where a new medi-port was freshly implanted last Monday. And poorly again at the hospital in recliners that don't like to stay reclined while receiving chemotherapy between radiation therapy sessions. And then best in the late afternoon, at home on the couch.

But I did make it out for lots of social activities this weekend, which is both impressive and heartening, I think. On Friday, Dad and I went to meet a fellow UU, Brooklynite, twenty-something, cancer warrior. He and his roommates had a dinner party to celebrate the excess of food in their refrigerator. So we scored a yummy free dinner and I met a new friend. On Saturday we were joined by friends for dinner and a movie--Slumdog Millionaire is a definite must-see, by the way. And today--this you will not believe, I almost do not believe it myself--I went, on the subway, to Manhattan, to the "Craft-tacular", which was (predictably, and yet, somehow, unexpectedly to my and my friends) a total madhouse of hip New Yorkers eagerly Christmas shopping. There were so many people that you almost couldn't see the crafts (think more hand-crafted jewelry, pottery, t-shirts and handbags than popcicles, paste, and construction paper). It was as exhausting as the mall on a mega-sale weekend, but if my body were in a different state I would definitely have appreciated the Brooklyn Lager booth. By the end I was stealing folding chairs and running to the bathroom with a mouthful of vomit, but I just about completed my shopping (including a wedding gift for a wedding I went to last New Year's!), so it was well worth it.

And now I am happily resting, back on my couch, awaiting Mom's arrival and trying to write poems. All-in-all, things are looking not so bad. And this week ahead I only have radiation, which is not nearly as bad as chemo, and the prescription for the most likely side-effect, esophagitis, is to eat ice cream! Should be a pretty good week.

(especially if you would start leaving comments on my blog again. I really like them.)

Tuesday, December 2, 2008

Reflections After a Green Burial

I didn't mention in the last post some sad news. It was just so upbeat, and cancer is such a downer, I wanted to have a happy post. But it is important to acknowledge the crappy side of life, too. On Saturday morning my Dad's wife, Anne, passed away after 12 years surviving breast cancer. She and I chose diametrically opposed treatment strategies, but I think we both learned from each other--watching quietly, in our own ways. I know I learned from her, anyway.

I often feel at the mercy and whim of my doctors. Feeling out of control of my own life is possibly the hardest part of this mess for me. But Anne never let that happen. She made her own decisions, in her own time, and on her own terms. More importantly, she lived on her own terms. Right up until the end. Taking her daily walk, pushing past the pain long after I would have given in to the limits of my body. Emailing each day, long after she no longer felt up for visitors, even something as simple as climbing the stairs to use the real bathroom instead of the portable toilet they had toward the end in the living room next to her hospital bed. She did as much as she could for as long as she could, but she didn't get angry when she had to finally give up her pleasures and her routines. One-by-one she had to give up her spirit-sustaining activities, and every time she did so graciously. I can only hope to go out with such dignity and grace.

Anne's patience with herself, and this disease, and with life; her ability to face the best and the worst of living and do so on her own terms, no matter what anyone else thought, were qualities I marveled at. As I fight my own battle and live my own life in spite of this disease, I will often remember her strength and resolve and try to draw from it. There are many days when juggling doctors--their opinions, assumptions, arrogance, and even their genuine sympathy--against my own plans and dreams and needs, seems next to impossible. There are still more days when balancing disease and treatments and side-effects with life and fun and work seems not only an impossible, but a miserable task. But at my moments of greatest frustration, I will remember Anne and her stubborn ability to slow down, and will the rest of the world to slow down with her, and in the breath that remained build a life and a community that suited her, and her alone. I will remember her and I will draw from that strength; and I will plow forward with the life I choose for myself.

Monday, December 1, 2008

An Hour To Myself

And I've decided to talk to all of you. A conversation in my head. I am sitting on my mother's couch (still referred to by my father as "the good couch" as it is the only new piece of furniture my parents ever bought together...back when they were married...over a decade ago), with her dog, Jack, who is not entirely pleased to be sharing the space. I am listening to my favorite singer--Ms. Mimi LaValley from my YRUU days--and generally feeling good. My stomach is not 100%, but I haven't puked at all today and miraculously woke up without too much sour tummy even though everything I ate yesterday was greasy (except the chocolate cake) and I ate it well into the evening. I can't remember the last time I woke up and didn't vomit stomach acid. So today is a good day. And I've been having lots of those lately.

I am on my extra-long-thanks-to-thanksgiving break from hospitals and doctors and medicines that make me feel like crap. Last week was full of family and food (that I mostly did not throw up--well on my way to gaining back the twenty pounds I'd lost since my return to Sloan). I have once again fallen in love with my nephews, who can now both call me "Tia Wose", and who are both chatterboxes of the most endearing kind. I missed my sister Megan, her husband, and their beautiful baby girl though. Little Evie got a virus and spent the holiday weekend scaring her mommy with fevers and a wheezing cough, which left us all missing each other.

I found myself, as usual, but especially so on this holiday, thankful for life, as it comes, everyday. Thankful, too, for friends, family, and my partner Julia, who is both, and who survived her first Lynd family Thanksgiving, or Thanksgivings as the case may be. We had "small, medium, and large Thanksgivings" this year, as my cousin, Clare, put it. On Thursday my brother-in-law Alex, with moderate help from the rest of us, cooked a fabulous Thanksgiving Feast for our immediate family plus one aunt and uncle (just 10 of us, including the boys). On Friday, my cousin, Brent, and his partner, Reanne, had us over to meet her family and see their beautiful old victorian apartment--which amounted to 20-some adults plus kids for another feast, this time centered around a honey-baked ham. Then we topped it all off with my family's traditional pizza-feast on Saturday, where about 35 of us engaged in our usual conversations about politics, the universe, and who is a first or a second cousin, who is once-removed, and--for the girlfriends and the folks who married-in to this clan--whose name can I remember? Julia was almost falling over from exhaustion by the time we left, laden with the usual leftovers.

So, before my mind starts to wander to darker places, I leave you this post, so you know that I am doing well. I am still essentially bald, but the new fuzz is growing in, and someday soon there will be enough to even it out with the longer stuff that never fell out in the first place, and in the meantime Rachel lent me the softest hat in the world to keep me warm. And even on the coldest, dampest, greyest Columbus day, I am glad to be here in Ohio, resting far from doctors, eating yummy food, and just letting myself be for a few days.