What a strange eight-week trip I've had.
Eight weeks ago tomorrow, my doctor started me on a regime of extreme vitamin and mineral supplementation and "serious rest" to deal with anemia, vitamin D deficiency, chronic dehydration, and exhaustion. While following her orders for the last two months wasn't overly difficult (I took pills on a prescribed schedule and had blood drawn every two weeks), the side effects made for a lousy end to 2010. My life slowed to a crawl as I slept 10+ hours a night and lost track of most everything that wasn't my immediate family, work, and daily life-maintenance chores; the heavy iron supplementation caused constant abdominal pain that interfered with accomplishing anything meaningful (or arriving to work on time); the (expected) worsening exhaustion made me perpetually irritable and unfocused; and I've gained ten pounds. "Incredibly unpleasant" is an apt description.
I've never been so grateful for the ability to take an extended vacation in late December and early January each year. I was thrilled to be able to spend the last week of the year in Saratoga Springs, celebrating Christmas with my parents and extended family, and taking it easy each day. I was able to see almost all of my family and friends from upstate NY as well as some out of town guests, played a spree of board games with the parents, attended a half-dozen low key holiday parties, knit a great hat for my Dad for his birthday, and spent time resting and recuperating -- it was a truly delightful trip, though I'm still marveling that Christmas came and went without my month-long gift-making and cookie-baking spree. I felt better at the end of that week than I'd felt at any time in the previous six months -- which I took as a sign that "following doctor's orders" was having the right effect!
I returned to the city on New Year's day for a Staycation with Corrin; we planned to visit Ellis Island and the Lower East Side Tenement Museum, the Metropolitan Museum of Art, go ice skating in Central Park, and get lost with a camera in lower Manhattan -- all around my follow-up appointments meant to evaluate whether or not the treatments were working. Unfortunately, we didn't quite make it that far. On Monday night, following an 8-hour spree of debilitating abdominal pain and two hours of pain-induced vomiting, a panicked call to my mother and a 2 a.m. conversation with the best physician I've yet known sent us racing to New York Methodist Hospital's ER.
I'm far too familiar with Emergency Rooms -- and my knowledge has nothing to do with
a certain hit television show. As a klutzy kid, I dealt with multiple visits for broken bones and split skulls -- at least once a year from 6th through 12th grades. As a college student I interned at the Department of Veterans Affairs, where my office was located between the ER's intake desk and the triage room. And at various times I've been the caregiver, patiently waiting on the uncomfortable chairs while politely (and persistently) asking questions of the staff. So when we checked in during the wee small hours in the city that never sleeps, I figured we were in for a long night.
Say what you will about urban medical centers, the staff at NYM were exceptional. Corrin held my hand and my head for five hours before we were seen, but that's to be expected when men covered in bloody bandages and children in severe respiratory distress are brought in -- Emergency Rooms are for trauma and the triage system is designed to provide the most life-saving care first. Once we were assigned to a room in the women's services area and a team was assigned to my case, we received some of the best care I've had. After ten needle sticks and recurrent labs, an IV drip, a set of abdominal X-rays, a diagnostic ultrasound, and several hours of being poked and prodded and generally tested, I was diagnosed with a ruptured cystadenoma on the right ovary. This type of cyst is known to be particularly painful when it ruptures;
my doctor describes the pain as being "roughly on par with with birthing
a healthy-sized baby". (Good news; childbirth is going to be a walk in
the park.) Incidentally, my iron levels presented in the "normal" range, as did my vitamin reserves -- and my hydration was roughly on par with the average person who hadn't been able to keep down water for 15 hours. I was released from the ER thirteen hours after arriving, with instructions to take it easy and see my primary physician for follow-up within twenty-four hours.
Development of cystadenomas is a known side effect of the type and quantity of pills I was taking. The good news is that after reviewing all of my labs on Wednesday (and drawing yet more blood for final tests), my primary physician has ruled that my anemia *has* been overcome, in just two months rather than the projected six. The Vitamin D numbers are a little shakier and building reserves may take a few months longer, but I've been excused from completing the prescriptions she assigned in favor of a mild, metabolism-boosting women's daily multi-vitamin. I'm supposed to continue with building a "reasonable" sleep schedule, as my fifteen-year program of five-hours of sleep per night is apparently unsustainable, and should begin running and practicing yoga regularly. Building something like a normal stamina (and being able to dance regularly and safely) will take approximately 16 weeks, given that I've been restricted to no activity at all for eight, but there's no reason to anticipate any problems.
The bad news -- well, there's always bad news. The constant abdominal pain I've been in since early November may be a side effect of heavy iron supplementation, or it may be something more serious. I've been referred to a gastroenterologist for a full work-up in response to this particular complaint, and if he agrees with my primary physician's assessment that I need routine GI care, he'll follow me annually. Also, given the rapid-growth of the cystadenoma and size and severity of the rupture, and my family history of breast and ovarian cancers and cancer-related disease, and the family history of GI-tract cancers, I'm being referred to a geneticist for a complete test along the BRCA-I and II lines as well as "the newest and most recent tests for GI stuff."
I have a very healthy opinion of genetic testing, I think. Part of that is because I've been so incredibly fortunate -- in working for the American Cancer Society, I've been able to attend three conferences on Strategic Health Initiatives and the development of genetic testing, covering everything from data versus diagnosis through treatment and classification of pre-disease-noted patients and the ethics of information sharing. I've met people who refer to themselves as "cancer previvors" -- people who have taken dramatic and drastic courses to prevent cancer, undergoing radical surgeries and preventative rounds of chemotherapy. I'm not about to go lopping off body parts, or freaking out about perceived changes to my understanding of my own mortality -- genetic and genomic research is still so new that any "diagnosis" I'm given will truly be no more than another data point in understanding how and when my body is more likely to respond to the world around it. Since I don't believe in reincarnation or any sort of post-death reward, my take is that we get one shot at this life. My goal is to do everything that I can to live well and freely, pursuing happiness with every breath, and fighting like hell to ensure that all human beings have those opportunities. That isn't going to change -- regardless of what the genetic tests reveal.
Thanks for sharing this journey with me. The last eight weeks have been a side-trip -- a jaunt down a road I didn't plan to travel. My blog is not going to become a recording place for my physical health and wellness or ailments, so you needn't worry about being inundated with gruesome medical facts. Instead, I'm doing something specific along the "pursue happiness" lines -- I'm working with Alicia of
Pixel Paper to properly brand Expetesso, and will be turning this space into a showcase and process blog for the creative endeavors I've fallen in love with over the last few years -- knitting, crochet, embroidery, baking, cooking, sewing, dancing, folk music, photography and story-telling. The changes are a process -- I'm not sure exactly what I'll cause to happen, but I'm looking forward to the adventure!
Love,
Lissa
First published at expetesso.com
