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.
Monday, August 6, 2012
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.
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.
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
• 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.
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.
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