Holding On, Reaching Out

July 21, 2015

Greetings from my MSK penitentiary! I’m deeply sorry I haven’t written in so long. I feel like a tragic version of “Where’s Waldo” in a straight-jacket amongst a sea of stethoscopes, pills, blood pressure cuffs, nurses in obnoxiously colored scrubs, and doctors dressed appropriately as clowns. Only within the last week or so has the straight jacket known as depression and anxiety loosened its grip. Despite all that’s happened in the last few months, I feel like I am now mentally stronger, more capable, and clear headed to re-enter the blogging sphere to reach out and even begin to share what’s been happening on the Ali rollercoaster ride. So buckle your seatbelts and hold on, here goes!

Catching up on the last four months, where have I been? Ok, to crack the nut-shell, by the time of my birthday in April (Thanks, Danielle for being there!), my body started going down big time. Killer T-cells had taken over my lower intestine and my blood cells, thinking my own blood and guts were enemies.   I didn’t know this at the time, but my parents were told to “hope for the best, but be ready for the worst” at least twice. You cannot live long without white (immune) cells, nor can you get a bag of them for transfusion. As a result, I was getting life threatening septic infections. At one point, I had three different infections, and although I was awake and somewhat alert, I was only awake and alert enough to know that something was going terribly wrong, and that docs and my parents started looking at me with kindly faked smiles and sad eyes.

I continue to think that I am the luckiest unlucky girl on the planet, as doctors told my parents that most adults do not survive one of these septic infections, let alone seven or eight, many of them simultaneously. To combat the infections, I was pretty much as antibiotic-infused as a non free-range chicken, and given enough immune suppressive medications to kill a kitten – nine times over. There were so many med-bags hung on my pole that they needed a second pole with nine or ten pumps grinding out a list of meds longer than my arm just to keep me alive. My port was connected to at least 9 different lines, threaded around like California freeways.

I was loaded up on morphine and Ativan to keep pain at bay, but mostly to keep me from realizing what was happening to me. “Going under” has been one of my guiltiest pleasures of total body “healing,” an instant feeling of heaven. I’ll never judge another addict in my life. Every problem in life can be solved with something that knocks you out — except then there’s the “wake up.” I suppose death can offer the same relief, and seriously that does bring me some twisted relief, but I wasn’t quite ready to go there yet if I didn’t have to.

So very fortunately, I survived the septic infections, suddenly stopped getting them (thank you for the life-extension, higher power!)   Unfortunately, however, in the few weeks that I was going down, I lost my ability to walk, as my once strong dancer legs shriveled to two weak sticks, flamingo like, except not as great a pink tone. I experienced two serious falls, but luckily the only thing that broke was a bit of my confidence and spirit. As I look back on that break in writing this, I realize that I got up after each of those falls (even though I’m scarred now, fearing hard surfaces!) I don’t want to take the credit for my “uprisings,” although anyone who knows me will know that that word fits. The truth is, my mood did break hard. Watching all my peers graduate this past spring hurt even harder. But somehow, I did hold on. I feel like a farce whenever someone calls me an “inspiration,” because all I have to do is look down on my weak and morphed body lying in the same position day after day. I have to give in to the idea that simply enduring is all that it takes to be inspirational. I’m working on it, and in hindsight I guess I’m still here, so it’s true. The trick, I guess, is that in just moving my body ahead sometimes, and leaving my mind behind, I can get to the hindsight part. I just got up.

I got my second transplant and the beginning of my third life on May 19th, when my prior donor, came to the plate for me a second time and literally gave me a piece of his life back; the transplant gave me back a piece of myself that wasn’t even me in the first place! Pretty surreal.   I successfully engrafted in just five short days, but this time around I am being kept on high doses of immune suppression until my blood can identify me as a friendly stranger, not “the enemy.”

After almost five months straight in the hospital, I’m alive, my counts are holding steady, and I’m strong enough to begin to regain my dancing legs, Ms. D ! Not being able to walk, to be completely dependent on everyone to do things for me, and losing many of the simple pleasures like hot baths (my prior twice-a-day escape) and acting out my anxiety with manic arranging and cleaning has been especially difficult. I am now in intensive daily physical and occupational therapy, and the hope is that I will be able to get strong enough to come home and receive outpatient and at-home rehabilitation. I’m trying to avoid inpatient rehabilitation. I really don’t think I could take another institution, especially a new one where no one knows me or my body.

I’ve done a lot of holding on since December, 2012, literally and figuratively. For me now, holding on takes on the physical form of my holding on for dear life around the necks of my PT and OT specialists and my Mom and Dad, as they help me to take a handful of steps. My dad joked with me that he got the pleasure of living through my first steps for a second time — though this time, it was difficult to tell which one of us was more excited. Holding on, in all the facets of meaning including patience, endurance, hope, surrendering to reality vs. what I want, and reaching in to myself and out to others is, though I hate to admit it, the secret to why I’m still here. I learned young and dumb that I am part of an interconnected web that I had once thought I wanted nothing to do with. When cancer struck, I was a 19-year old who had just gotten her sea-legs and started feeling strong and adult, and independent from outside assistance in the “important” domains of life. The longer I hold on, however, the more I realize that maturity comes not only in realizing what I can do on my own, whether it be to walk again, study again, or enter the social world again, but in realizing what I can’t do — and what I now know I cannot do alone: live, love, and yes, hold on.










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