Visible Ink: Reading of Patient Works 2013

What a gratifying treat to be able to travel to Manhattan not for medical treatment or pow-wows, but instead to see a piece of my writing staged by Broadway actors. For real? For the second year, the judging panel of the Visible Ink Writing Program hosted at Sloan-Kettering chose my submitted piece – “The Guru in the Elevator” – to be one showcased along with 17 others in a night of beautiful performance.

I was thrilled last year and again thrilled this year, especially to be part of the program’s fifth anniversary reading of works. The evening brings together prose, poetry, playwriting, music, dance … followed by a reception of cheeky hors d’oeuvres and sweet delicacies – pretty much all of my favorite things colliding.

My beautiful entourage.

My entourage included Craig, my parents and sister. We had roped-off VIP seating right behind the program’s venerable founder and my extremely kind and wonderful mentor, author Judith Kelman – recently named NYer of the week by NY1. Each of the front rows was marked off for those authors whose work would be showcased that night. It was an honor to be among them.

Working with Judith who pushes me to be a bolder, tighter writer and helps me to brainstorm and focus has been instrumental for me. The program does exactly what it intends to do: empowers and heals. Fox5 NY covered the event and put together a great package showcasing the performance and the program itself. 

All 700 writers that currently participate in the program have been a patient at Sloan-Kettering at one point or another, but not all stories performed that night focused on cancer. There were funny stories and poignant stories, heart-wrenching videos and interpretative weavings of letters of love. It was a wonderful mix, each piece performed wholeheartedly by actors with Broadway credentials kind enough to call these annual readings of patients works to be one of their favorite gigs.

With my mentor, Judith Kelman. 

As evidence, the adorable, animated actress who played the Turkish woman in the kitchen in my piece last year, played me this year and she couldn’t have done better at the part: one that didn’t showcase me in the best light (it’s okay, I crafted it), but was as truthful as can be. It was an honor to have her portray me. Craig’s alter-ego was spot on as well – perfect at the deadpan, unwavering stubbornness that drove me wild on that day that I wrote about.

What made me the happiest were two things: 

To have my family there with me to celebrate a joyous occasion – not huddled around me in mask and gloves waiting to throw the puke bucket toward me.

To have been a part in making people laugh. The actors and the photomontage the director created in the background brought my words to life displaying the right emotions in the right spots. It’s a pretty surreal thing when the words you write get translated into motion. To be honest, I couldn’t even take it all in. I just watched wide-eyed and gape mouthed, fueled by the chuckles from the packed house and filled with humility and pride thinking about how that real, truly shitty day the story was based on could possibly have turned into such a positive, proud, and humbling moment. 

The performance was professionally videotaped, and I'll post a link as soon as it is edited and published. Below are some photos from the performance and the text of "The Guru in the Elevator," which was also published in the fifth anniversary Visible Ink Anthology. You may remember it is a chopped and reworked version of a blog from last summer. 

From the evening's program: 

"The pages are still blank, but there is a miraculous feeling of the words being there, written in invisible ink and clamoring to become visible." 

- Vladimir Nabokov 

With my stage version: Actress Karen Wexler

Craig with the actor who played him, Joe Ricci

That's "us" with our elevator guru. 

                

The Guru in the Elevator

By Karin Diamond

A year ago, I was recovering from an allogeneic stem cell transplant: uncomfortable, irritable, nauseated and in pain.  In other words, a bitch.

This morning, I was particularly tired and weak, not eager to make the trek to the Upper East Side for my daily clinic appointment.

Every couple has sticking points, and that summer, ours was cab-hailing. I begged every night to call ahead to schedule door-to-door service. A certain man was confident that getting a cab would be a breeze.

We awoke and dressed. The tension was seething between us as I ate my toasted waffle with a side of six pills and a spoonful of chalky anti-fungal rinse.

I covered my face and nose with my paper mask, snapped my fingers into my plastic gloves – the picture of fashion. Shuffling on my stick-thin legs, I made my way through the streets with my husband, Craig, eyes peeled for an available cab.

Finding a morning taxi at the hub where the Long Island Railroad, New Jersey Transit, and a slew of subway stops dump means fierce competition. Getting a taxi to stop for someone who looks like she’s carrying a communicable disease makes beating the challenge near impossible.

I was losing patience and my energy was fading. Craig stood on the corner – arm out – as cab after cab whizzed by or other people cut in front of us.

 “We should have called ahead, ” I said. “We’re never going to get a fucking cab here.”

Craig stood, unwavering, as I nagged. He wouldn’t even acknowledge me. My angst and frustration were rising to dangerous levels.

Fifteen minutes passed.  No cab. 

“We should start walking,” I yelled through my mask.

“Be patient,” Craig said.  “We have plenty of time.”

            “Things wouldn’t be this difficult if somebody wasn’t so stubborn!”

I felt a bout of rage coming on.  I was hot, then cold, then nauseous and woozy. I was still getting transfusions, my body wrecked by chemo. I hadn’t taken a normal shit in days.

“I’m going to the Penn Station cab line,” I told Craig.  The Station was a long avenue away, but there were guaranteed cabs there. With that came a guaranteed line of people waiting for those cabs, but I was in no mood to be reasonable.

“That’s ridiculous, Karin.  Just wait.”

My mind was made up.  “I don’t know what you’re doing, but I’m going to get a cab.” I started on my way, thinking this was a good way to get him back, because obviously, the whole New York City cab inefficiency problem was Craig’s fault.

I weaved at a fast clip through the throngs of people pouring out of Penn Station. I had only recently found my legs, but that morning I got my sprint back; spurred by determination to prove a point.

My sunglasses were steaming from the air coming up through my mask.  My hands started to sweat and itch.  I pushed on toward the crowded cab line.  Then my cell phone rang.

“What!” I snapped at Craig.

“Where are you?” he said. “I have a cab. You need to get here.”

I could hear the cab driver in the background yelling at Craig.

“Are you coming?” he urged.

            I did what seemed reasonable at the time:  I hung up.

Shuffling up the street, I dodged men selling framed Justin Bieber prints, bootleg movies and peace pipes.

Soon, I started seeing stars and thought I might pass out. My cell phone rang again.

“What?” I said, knowing very well what.

“Where the hell are you? I can’t hold this cab for long,” Craig said.

“I’m coming!” This time I kept our connection open so that he could hear my labored breathing as I lumbered up the block.

The cab driver was screaming: “Get out of my car!  Get out!”

“Please.  She’ll be right here.  Look.  Here she is!”

I collapsed in the back seat and the cab driver sped off, still yelling. 

Neither Craig nor I spoke a word, but a lot was said. I didn’t feel well but admit that I amped up my breathing and moaning for dramatic effect.  Craig’s eyebrows furrowed, his back was rigid as a plank.

The cab driver let us out at the hospital entrance and peeled away in a cloud of city smog.

Craig walked 10 feet ahead of me, as if our anger would implode us if we got too close.  I labored behind, so he had to hold the elevator door.

A man stepped in the elevator car with us for the ride. He was in his mid-fifties, easy, breezy and relaxed. I wanted to hiss at him.

He regarded me in my mask and gloves “I used to be like you,” he said.  “I was a transplant patient fifteen years ago.”

La dee fucking dah, I thought, sneering through my facemask.

Turning to Craig, he said, “You want to smack her yet?”

What? Who is this guy? I was shocked at his remark.

The elevator door opened. The three of us stood in the vestibule.

“A year from now she needs to take you on a vacation for having to put up with all her crap,” the stranger said to Craig.

I stood there like a doofus, knowing that this man remembered the many days on his own drug-fueled, post-transplant, emotional crazy train and could tell I was conducting my own engine that day.

“Do you know what happened today?” Craig asked, breaking into a smile.

“Yes. I do,” the man replied and walked away down the corridor.

That broke the spell. We both let our guards down and looked each other in the eye.  We almost smiled.

One year later, we did take that vacation, one rich in the natural beauty of Acadia National Park – a far cry from the previous summer’s concrete jungle confines. We left our attitudes and stubbornness behind.  No cabs to catch in Maine, only crates of lobster and fresh blueberries to contend with. 

Visible Ink 2012 Staged Reading Video

After several months of editing, the 2012 Visible Ink Staged Reading was posted to Sloan-Kettering's website. Below is the performance of my piece, "Kitchen Charades." Please visit the program's website and check out the other fantastic pieces of writing staged that April evening – one of the most humbling of my life.  

Visible Ink is a one-on-one writing program for patients at Memorial Sloan-Kettering Cancer Center that offers opportunities for self-expression, stress reduction, personal growth, and individual success at a time when many participants face the considerable challenge of a serious illness.

I am forever grateful to the program's founder and my mentor, author Judith Kelman, and the opportunities for creative outlet and confidence building that this program has brought me. I was so honored and in awe to hear my words being performed by Broadway actors that night. Even watching the video and hearing the audience's reaction is still surreal to me. 

Judith and I continue to work together on my writing. I send her monthly stories that we hone and polish together. I'm wrapping up two pieces to submit for publishing and staging consideration for the 2013 anthology and performance. The program gives me focus, purpose and a place of inspiration and comfort. 

My piece ends at 4:30. As it was the last piece to be performed, the closing song is wrapped into my segment as well (also worth a listen).

 

Masked Encounters

Outside a kitschy Little Italy bakery 

For 100 days I could not step into the world without slipping my hands into protective latex blue gloves and strapping a paper mask across my mouth and nose, attached uncomfortably around my ears with unforgiving elastic that would leave deep indentations in my skin.

I got used to children staring, gawking and pointing and to their parents awkwardly fumbling with how to handle the situation. Kids seemed to be the only ones who notice their surroundings. Most others either didn’t even notice me or went out of their way to avoid looking at me for fear that I would vex them or because it made them way too uncomfortable. This was the best part about recovering in Manhattan. There is so much stimulation that my little freak show was just a drop in the melting pot. Had I had to walk around like that in my rural Connecticut town where the most exciting things we see are bears knocking over garbage cans and the annual fire truck parade I imagine my experience would have been different.

Tête-à-Tête-à-Tête

My Sloan-Kettering peeps: Dr. Sauter's nurse, Heather,
Dr. Moskowitz, me, and Dr. Sauter - the dream team. 

I have been home and feverless since last Thursday when I was discharged from the hospital. We figured out what the cause wasn’t, but not really what the cause was. But I’m feeling better and that’s all that really matters. I was ballooned up with almost three days worth of heavy-duty IV antibiotics, IV steroids and lots of IV fluid in hopes of flushing any kind of infection out. No bacteria grew in my blood cultures. My chest and lungs are clear. There is nothing out of the ordinary in my blood work, except for that incredibly high sed rate, indicating high volumes of inflammation in my body.

I got the sign off by the medical, oncology and infectious disease teams that were overseeing my inpatient care and was sent home with instructions to call if chills and fevers again broke in. Despite trying to get out of my previously scheduled appointment, my doctors at Sloan really wanted to see me in New York City on Friday. I was desperately tired on Thursday after finally getting home and couldn’t even fathom a trip to the city, but they assured me that they could see me at whatever time I could get there. They are ultimately the ones who I’ll be working with to decide my next steps – and the ones who watch me so closely and frequently, so I knew that in the end it’d be worth the trek for them to inspect me and weigh in on what might be happening.

My parents took the day off of work and my dad drove us into the city so that I could catch up on all the lost sleep coming off of my hospital stay. I didn’t really sleep, though. I was more cranky and delusional, kind of like when I used to ride in the back seat as a toddler I imagine. We sat in a lot of traffic, which only made me angrier. But we got there, as we always do. I was too impatient to wait to park the car so jumped out on York Ave and made my way into the hospital and up to the physician suites grumbling.

Target Radiation

A very quick and boring treatment update:

I have been off any type of chemotherapy for a month now. Though my last scan looked better, the Vinblastine chemo was not well-tolerated, so I have come off of that seeking something that will be more in sync with my current goals of long-term treatment to keep the cancer forever at bay and me living as long, active and fulfilled of a lifestyle as possible.

After review by all of the brains in the lymphoma service at Sloan-Kettering, it's been decided that the best course of action for me right now is to get rid of the problem spots of disease on my vertebrae and sacrum. It is not safe to let those spots ride; if they grow any larger, there will be no more room for my bone and the vertebrae will give out on itself – a very sobering thought. The spots are each causing significant pain and the one collapse risk involves potential permanent problems and very severe pain or loss of movement. Not acceptable.

So, we're going to go in and zap these areas with very targeted beam radiation. Three spots will be radiated: my right sacrum, T7 and T10 vertebrae. The radiation will melt these areas of disease on and in my bone without effecting the surrounding tissues nor the rest of my body. I am told that there will be no side effects, except maybe a little fatigue. It's nothing like chemotherapy nor anything else that I've been through. However, I've never received radiation in all of my near three years of treatment, so obviously the unknown is a little scary.

Once these problem areas are taken care of, then we will rescan my body and address the other smatterings of disease (of which there was not much at all on my last pictures). The hope is that once these bulky, dangerous areas are gone, we can be a little less aggressive with the chemo and allow my new immune system to hopefully kick in some more, or do some exploring with novel therapies.

All of this will be determined after I complete 10 consecutive days of radiation at Sloan. I'll be on the radiation table for about an hour each time to get each of the three spots (the max amount of spots that can be radiated in a session). I won't have any restrictions otherwise. So, though I'll have to relocate to Manhattan for two weeks, this time I'll actually be able to enjoy the city. I'm making a list of all the things that I want to do while I'm there and not having to wear a mask and gloves and avoid crowds. Bring on the museums and shows! I'm trying to focus less on the few hours a day that will be spent at the hospital.

Last week I had my simulation done during which a mold was cast of my back body and seven pin-size tattoos were permanently inked on my body to ensure accurate placement on the machine for each time I show up to be treated. The tattoos correspond and triangulate with lasers in the room that will keep me placed in the right spot. My newest team of doctors - the radiation oncologists – are now working on the plan of how they will aim the radiation beams themselves to most accurately shoot and destroy the cancer cells while keeping the rest of those delicate spinal areas unharmed.

The start date is still up in the air ... . There's a chance that I could begin with the dry run-through as early as Monday. In the meantime, I am on a course of 50mg Prednisone steroids to reduce the pain and inflammation I've been experiencing. That has it's whole own set of side effects: crazy dreams, shakes, swelling and eyeball-popping-out feelings, but it gives me the energy to get through the day.

This plan sounds very promising and I love the idea of getting directly at these problem areas without all the residual side effects. Of course, we're risking the chance of other areas of lymphoma growing while I'm not on systematic treatment, but it's about finding that balance and focusing on the most immediate task at hand.

When the 10 days of radiation are done the spots will be gone, my pain will be alleviated, and I can continue forward with a cleaner slate to work with.

100%

Not only am I currently cancer-free, I am now 100 percent Kristen blood, not a trace of my own left. The results of my bone marrow biopsy from Day +32 came in: My immune system has been completely replaced with one identical to my sister's. This is excellent news – and not just because I can now get away with a crime scot-free. The most excellent part is that my new bone marrow is functioning very well on its own. My blood cell levels are in the normal range for the first time in years. There hasn't been any need for transfusions because all systems are functioning well, proving that my sister's donor cells gave me a very strong graft.

She and my mom came to see us in NYC yesterday. It was the first time I had seen her since transplant. Standing next to her I told her that I could feel the vibrations between us, like magnets. She laughed and asked me if I was crazy and I said, yes. But I really could feel it: good vibrations flowing through my veins.

Allo Transplant Day+25

It is Day +25 and I am thrilled to report that I'm feeling strong enough to finally write – at least at this current moment. On July 5^th I left the hospital after a 27-day stint. Craig and I moved into the American Cancer Society's Manhattan Hope Lodge, free housing (and so much more) provided to cancer patients. I've been here for six days and am so thoroughly impressed and in awe at the generosity of this place. I am comfortable here and love the fact that I can say I am now a New Yorker – I always did have a tinge of regret that I never lived in the city and now, here I am. Maybe it’s not the circumstances I expected, but I still get the opportunity to live in a 12^th floor corner “studio” with huge windows facing the gorgeous architecture of the buildings surrounding us on 32^nd Street, nestled between 6^th and 7^th, the fashion district, Chelsea, and Koreatown just blocks away.

Even though I’m here because I have cancer, I still get to have a rooftop terrace to sit out on with succulents and greenery and fashionable, comfortable patio furniture. When I look to the right I see the Empire State Building up close and personal. When I look across the street I can see the iconic sign for Macy’s Department store – the biggest retail store in the world and the center of Virginia’s Santa Claus revelation. When I look to the left I see a brick office building with the most intricate, lush climbing ivy that I’ve ever seen. It moves in the wind revealing ebbs and flows of light to deep, rich greens. Just past that there’s Madison Garden and Penn Station – the busiest train station in North America. There are parks and common areas and outdoor movie screens and a 3 floor 99 cent store ….. so much around.

I’d say I’m in a pretty cool place. Only problem is I’m supposed to avoid crowds, which is a wee bit difficult with x-million people crossing through the area per day. So far I’ve been watching them like little ants bustling around while I sit like a cat on a perch looking down from my room above. I love the unique beauty, the action, the bustle: it infuses life into me while I currently move at a snail pace. It’s a nice balance. I am allowed to be outside; I just need to wear a mask and gloves and not touch or rub up against anything or anyone – contact is the biggest enemy, but the chances of germs hopping through the open air are slim and my doc wants me to be out and walking little bits each day.

My start of physical recovery has been hit or miss by the hour, literally. Side effects fly in and out with no warning. But I would say that overall I am mountains better than I was last Tuesday when I was released. When I say mountains I mean I can be on my feet for more than 2 minutes. I mean I’m not constantly nauseous. I mean I’m not doubled over with abdomen pain. They are small accomplishments, but to me they are mountains. Slow and steady will win this race.

Craig has been there to catch me through it all and handed off the caregiving to my mom this weekend who also got to catch a bucket of puke, an unexpected full Saturday at the clinic, and a lot of snipping and swearing and crying on my part. Here’s a sampling of what I’ve been going through over the past five days: intestines aching with the newness of processing foods, severe migraines, swollen and achey joints, diarrhea and stools of shapes and colors and smells like nothing a human should produce, a few vomit sessions, several nausea swoons, a couple heaving emotional breakdowns, a regular patch of moss growing on my tongue, achey teeth bones, a very painful hematoma in my left chest/shoulder area – basically a big internal bruise and pooling of blood from when they put in/pulled out my catheter, the concerted effort to choke down 22 pills a day and a spoonful of gaggerificic white milky antifungal medication (Posacozanol) three times a day to wash it all down – a medicine that costs $1,000 per cough-medicine sized bottle and lasts a week (I’m grateful for the $75 co-pay), and of course tremendous fatigue from all of the above and the fact that my body is rebuilding itself from scratch and getting used to my sister’s blood sysyem being inside of it.

According to my mom, I said many things that Kristen would say this weekend and I blame her genes for the migraine-filled Saturday as severe headaches are something she is very prone to. I can also “blame” her for keeping me alive and giving me this literal second chance at life, so I guess that gets her off the hook, probably a free pass forever. Love you, sis.

But truly, each day gets better. I was in pretty rough shape, but I suddenly have some clarity again. Today I am wearing jeans (no, not even the pajama jeans currently being hawked on TV commercials) for the first time and I have not needed one cold pack or hot pack on any parts of my body. The clouds in my head have parted and though I still need a hardcore daily nap I was able to walk a few city blocks today.

I have been back to the transplant clinic at Sloan three times since my inpatient breakout. This will be the case for the next several months, which is why I need to stay here in the city. At clinic, my blood is drawn so that they can see what the levels of immunosuppressants are in my body. I take drugs called Tacrolimus and Sirolimus, which are the ones that control my/my sister’s growing immune system – the levels need to be constantly monitored and the amount of each drug changed as needed. The medical team also checks my blood count levels and all of my chemistries.

On Saturday (my very low day), I received a bag of red blood cells, a Magnesium boost and hydration, but otherwise all of my levels have been looking very good. This means that my sister’s stem cells are working to turn into what my body needs: my white cell level is good, platelets have stayed level and my reds are remaining in the anemic range but nothing worrisome, or new for that matter. Craig and I spent the morning in clinic today and all of my chemistries came back great; I was even taken off of my potassium supplements, a testament to finally being able to eat more and therefore getting my nutrients from actual food, and maybe more importantly, not shitting it all immediately back out. Many of the meds that I’m on can also deplete me of nutrients so supplements will be required for a while.

As expected I’ve dropped a lot of weight. I’m down to 112 pounds today (so about 16 pounds from my “average.”) That’s a bit scary to me, but doesn’t seem to be concerning to the transplant team. I’m really doing my best to amp up the eating and the weight will come back in time. According to People Magazine, I’m the same weight as Paris Hilton and skinnier than Kristen Cavelleri from The Hills – isn’t that something to strive for? I kid, and that actually makes me sick to read that being promoted. I look forward to building back some muscle and getting back my booty – all in due time. A lean svelte body is much better than skin on bones.

On the subject of looks, my hair is gone completely except for some little spikes in the front; it bothers me more this time around as it took so many months to grow back last time. I have all of my bottom eyelashes, but only a few top lashes on each eye. My eyebrows have thinned significantly, but are still there. I’ve lost all of my leg hair except for patches on each knee. I have a few new scarred holes in my chest from the catheters. My skin has more chemo burns and darkening. These are all very inconsequential and unimportant things, but I can say that it is more difficult being bald and eyelashless this time around. I don’t like looking in the mirror and seeing such an obvious patient staring back to me. I guess I really did get used to having my curly hair and being able to hide behind that a bit even though I was still receiving treatment. But again, insignificant I know. I am just tremendously grateful to have gotten this far.

I am clearer and can start to look back a little bit onto what I’ve been through. I’m still not quite able to look at pictures of me in the hospital and I’ve not been able to bring myself to read my last blog; I have no recollection of what it says, I only remember that I was crying through writing it all and quite tripped out on medication. I see now that apparently I got through by just putting my head down and ramming through like a freight train. I dealt with each issue as it came up, focused on that and pushed through it. There was not room to do much else. I don’t remember much at all; I don’t remember what I talked about with people nor any of the really bad stuff. I remember the good things, the unreal kindness of the medical staff, and the times that I felt a little bit well. It’s like I had blinders on through the difficult stuff; it comes back in little glimpses and I shudder at those memories but am also proud.

I know for certain that what really got me through was the stacks of mail – packages and cards and letters that brought so much joy, the texts and Facebook messages and e-mails from friends, family, co-workers, perfect strangers, fellow cancer warriors. Visits from truly special close friends – my childhood best friend traveling all the way from middle Connecticut, by herself just to spend the afternoon with me, my parents, my brother and sister. It didn’t matter that I wasn’t strong enough to respond to people nor coherent when they visited, the support just continuously pours in. Like I said, right now I don’t necessarily remember what they said, but I do remember it lifting my heart. Pictures of my life outside of that room, of my family, friends, beautiful places I’ve been and seen and conquered and Miss Sammy, Sammy, Sammy got me through.

I still cry when I think about the deep kindness displayed from the people in my life. I have a second cousin that sent me a “daily photo from the farm” every day with a picture and funny anecdote about her kids or their animals or the beauty of nature on their country home. I have a dear friend who sends me a “daily photo of the outside” from some of her favorite spots in Hoboken to city and nature scapes. My mom’s best friend sent me an encouraging text every, single morning without fail. At my request, every night, whomever was with me would tuck me in and read me poetry. Our friends who are watching Sammy would Skype us in with her and have created a Facebook photo album constantly updated with funny pictures of her and their dog. That’s just a glimpse at the love that I felt all around me lifting me up.

Even to write about it is making me cry at this moment. I am forever, ever changed by what this experience has revealed to me about the human spirit and what true connection means. And my husband and immediate family? Words can’t even begin to describe the support and love and encouragement I’ve gotten in that department. My husband is cut from an incredible mold; he is with me by my side, always.

Sigh. So that is where I am at right now. Tomorrow I look forward to a breath-focused yoga class being offered here at Hope Lodge. Tomorrow night a group of singing lawyers is coming to entertain us and later in the week I’m going to take advantage of a session with a Qi Gong healing touch volunteer. There is much more to be written about the oasis that is this place and the amazing people from around that globe that I’ve met here so far and who are right with me in their own cancer journeys.

Medically, I am back to clinic Thursday for a levels check. Next Monday I’ll get a PET Scan and Tuesday a bone marrow aspirate to see what’s going on inside. The look at my bone marrow will reveal how much of my sister’s immune system is within me. The PET Scan will give us an idea of what’s going on with the lymphoma – if there is anything at all.

I am one quarter of the way through the big “first 100 days” and so far I’ve made it through without any major complications and no signs of graf vs. host disease, though onset doesn’t usually happen until Day+60 or so. Though very tired, I am grateful, humbled, proud and in love with life no matter how very, very, very difficult it might be sometimes to function in it. I can still feel the breeze on my naked head and spoon with my husband on a warm summer’s night. That makes it worth anything and everything.

Allo Transplant: Emotional Toll

I have been in this hospital room for 25 days now. I'm expected to be released in two, on Tuesday, July 5. Of course I'm excited about this release but I'm also so incredibly scared, confused, unsure, worried, all of the emotions that come from being in pure isolation, surrounded by the same four walls, to kicked onto the streets of New York City.

No one ever pretended that this was going to be easy, not even myself, but I just never could have fathomed the brutality that I've gone through. This transplant has been by far the most difficult thing I've endured in my life and I'm nowhere near the end. I've started going over discharge instructions and just do not understand how I am going to ever fit back into that world out there. For at least six months I'll still be on extreme precautions, and it can take up to a year for my body to full recover and rebuilt it's immune system.

I don't want to look at the packet of limitations anymore: no restaurants, no crowd, no events, no exposure to anywhere that there is sickness lurking, no un-Purelled babies, no walking past construction sites, no cuddling with my dog, no dusting, vaccuming, cleaning, or gardening, no public transportation, no fresh food, no berries, no fruit, no veggies, no cheeseburgers unless they're cooked to gray and oozing white liquid; no swimming in rivers or lakes (which means no kayaking), no alcohol for six months.

I have to be on constant watch and report anything as small as a pimple that pops up as it could be a sign of graft vs host disease. I have many bone marrow aspirations in my near future to check how much of my blood is Kristen's and how much is mine. I have a PET Scan in two weeks so see if there is any lymphoma hanging around and if so if it's time to unleash this new immune system after it, which means I'll also suffer the effects of it potentially eating away at my eyes, my skin, my bodily functions.

The pills will be tough. I'll be leaving with about 20 that I'll need to take multiple times a day. They've been weaning me off the IV form into the pill form over the course of this week in preparation of me going "home" to NYC's American Cancer Society Hope Lodge. Some are very large and uncoated and I am a big baby taking pills. For a few months I'll need to come into the clinic to check the therapeutic levels of the immunosuppressant tacrolimus and sirolimus drugs in my body to know how much to take each evening.

I am grateful and honored that I am now considered "engrafted" with my sister's cells meaning that all of my blood cell levels are back to normal, so her stem cells have done the job of growing and transforming into what's been needed there. However, I am disappointed in how awful I feel. I thought I'd be better by now. I have never been so tired in all my life – I'm tired all the time. I'm like a little baby that falls asleep eating, typing, even talking in mid sentence. And I am so weak. I feel that my legs have lost all of their strength and I'm so scared that I'll never get it back. That is devastating to me. I fell over in my bed the other night and I literally did not have the muscle strength to get back up. Taking a shower completely wipes me out of energy and I need to have Craig or my mom or an aid help to get me dressed. I'm doing the stupid physical therapy exercises as much as I can but there is only so much I can do in this small space that is just so conducive to healing and sleeping.

I am just about off the pain pump that had been on constant drip, which is great as I've hated being in that drugged stupor, but it's also made me realize how much it was covering. Every muscle and bone and my body is achey – much of this relates back to the five days worth of Neupogen shots I received to push my sister's new cells into my blood stream and bring my counts where they need to be. My bone marrow has been doing a tremendous amount of work.

I worry all the time about how I'll fit back into society. I worry about if I'll ever feel strong and healthy again. I worry about what opportunities will be left for me when I finish this. I worry I'll never be able to relate to anyone ever again because no one can fully understand – and I don't ever want them to. At least the doctors and nurses have seen it before and they know how awful it is and when they look at me and say: "You're doing really well," I can believe it. They can explain to me why my diarrhea is inhuman in texture and size. They can explain to me why I'm puking up foam like a rabid dog. They can explain why my face is bruised and why my vulva was 10 times its normal size for so many days. How am I going to talk to people in the outside world about that? Only those who are in this or caring for those who are in it can understand how utterly inhumane cancer treatment is and all the things that having cancer takes away from you. This is supposed to be summer filled with BBQs and firepits and the five weddings we are supposed to be at. I will not be at any. Just like I couldn't be there as maid of honor for my college roommate last year as I was in the midst of my auto stem cell transplant. It breaks my heart.

People say that they look up to me, learn from me, think of me as a hero, but I think that I'm just doing what any of us would do. I'm doing my absolute fucking best in an absolute fucking awful situation. I continue to move forward because I don't see the alternative as a viable choice. I breathe through the pain. I remain as patient as is humanly possible. I know that it's only me that can endure this and come out of this on top so that doesn't leave a lot of choices. I'm doing what I have to do to say alive. I can't give up and let myself down – not after all I've been through.

If I do have any influence on anyone, what I hope they take away is not to take their health for granted. It's to treat your body like a temple because you only have one. Don't smoke: it will kill you. Don't drink in excess. Don't abuse your organs. Don't ignore your high cholesterol or the plain facts about how bad a diet of fast food can be. Don't be a lazy piece of shit – get your body in shape, keep your lungs moving and your legs working because someday you may not be able to. You'll be amazed at the benefits that gives back to you. Carrying extra fat can be detrimental to any recovery you may have to go through as well. Wear sunscreen, always. It's not worth it. It's not worth that one month of a tan body for a death by melanoma.

I've seen it in plain face at all these cancer clinics that I've been to. I've seen people speaking through assist devices. I've seen people with no nose, no eye, carrying oxygen, with black deep unmistakable legions of skin cancer. The problem is that not enough people talk about it and it needs to be talked about. Cancer isn't only a killer. In fact, more and more people survive many types of it, but that survival comes at a huge price that will leave you forever broken. It's tough being a survivor as well: these people are warriors.

It's unfair. It's unbiased. I was healthy. I was strong. Now, do you think I'll be able to grow a baby in this ravaged body? Do you think I'll be able to fulfill the physical challenges I've wanted to in my life? Right now I can't see it, but I still believe that it will come into focus.

I'm not pretending I'm an angel and that's not my point: I drank, I smoked clove cigarettes on occasion at high school parties, I've smoked weed out of an apple. But it was always about moderation and balance. I'm all about inserting the fun and craziness in life, but that doesn't mean trashing yourself and sacrificing everything else. It means respecting yourself and finding the beauty and laughter and fun in all else that is out there. I'm not saying you have to live in fear of landing where I have. I know in my heart that it is not my, or anyone's fault, that I am in this place. What I am saying is that you need to build your body strong so that it can endure the physical tests that it no doubt will need to endure. You need to live every day with full zeal as you have no idea what news will come at you the following day. If you're not happy where you are in your life, change your attitude toward it or maybe it itself. It's that simple. Surrounding yourself with negativity will get you nowhere. You are the only one who can choose how you react to a situation.

I think back to Karin pre-cancer. What if I wasn't an athlete? What if I didn't run? What if I didn't love myself unconditionally? What if I didn't go to the gym every morning before work? What if I didn't eat a healthy diet? What if I wasn't intelligent with jobs that challenged and excited me? What if I didn't have an incredibly supportive husband? What if I didn't have parents and friends that love me unconditionally? I would never be doing as "well" as I am. Build your support system on every level and you will get over the bridges you think are impossible to pass. But most importantly you need to focus on you and getting yourself to that place of gratefulness, understanding and love.

I posted something on my Facebook page early this morning in a groggy Ambien stupor but I think it resonated so I'll share here:

If you ever think you can't do something, you can. I promise you whatever it is, with fearlessness, persistence, focus and drive you can do it. There is no room for second guessing yourself, only room for trusting in the power that is in you and will never let you down.

Allo Transplant Day+5 through Day+14

Since I continue to not be feeling well enough to write, I’m having Craig transcribe a basic update that I’m narrating. I’ve been in the hospital for 21 days and it’s been 14 days since the transplant. I have not left this isolation room.

Many of the side effects I recently experienced have left. Unfortunately, new ones have come in. The debilitating bladder spasms and pain is gone. I’ve regained control of my bladder and no longer have to use the commode at night. It seems chemo caused this bladder irritation.

Turned out my Hickmann Catheter line was infected so with a minor surgery they pulled that line and put in a new triple lumen catheter right next to it. Unfortunately it is in an awful spot, basically coming out of my armpit, making it tough to maneuver around, but it is working. At least the pain from the infection site is gone.

One-week post transplant my curly locks started to come out in clumps off of my head. In the shower I wet my hair and the weight of the water was enough to pull much of it from the back of my scalp and leave clumps in my hand. My scalp itched and burned so after a few days of discomfort, Craig helped me to buzz it off. I still have some stubble patches but it’s much easier to watch that fall out than longer hairs. While my eyebrows and eyelashes are still in tact, I’ve lost all my nose hair and delicate inner membranes.

I’ve had a few transformations to my bottom lip. I got incredible sores on them as well as in my mouth. The lip area has been particularly uncomfortable because it has been bumping against my teeth, is very dry, swollen, and bloody. Twice now, it has completely sloughed off. That has not been a fun experience. Right now it is pretty normal and I am just working on keeping it moisturized with vitamin A and D ointment. The sore on the back of my left inside cheek is also healing slowly.

Mentally and emotionally, I’ve been better than I anticipated. It wasn’t until day 21 that I said out loud that I’m ready to get out of here. I think it’s because I’m feeling so tired and fatigued and every day brings some new symptom so I wouldn’t want to be anywhere else right now. Here, the experts can do their best to alleviate pain, assure me that this is temporary and expected, and make me as comfortable as possible. I’m still so pleased with the caregivers and have gotten quite close with some of the nurses who have seen me in some very vulnerable moments and positions.

Craig has been with me just about all day every day, my parents have made a few trips in, and I have had visits by a few local friends. Mostly though, I have not had the energy to visit with anyone, return phone calls or emails, nor even be on the computer much. I’ll literally fall asleep typing mid-sentence or the room will spin and I’m too nauseous to focus on the computer screen.

Every day cards, packages, and messages come and I am so appreciative of these warm and gentle distractions. My room is filled with so many reminders of all of the love and support that I have behind me. The medical team is constantly remarking about how bright and well decorated it is in here.

June 29^th brought my 29^th birthday. My closest nurse knew she wouldn’t be here on the day of my birthday so she came in the day before in street clothes to bring me some funny birthday balloons. More balloons and ice cream cake arrived from the rest of the nursing staff along with tons in the mail from friends and family. On my birthday eve, friends came by for a short visit of laughs, complete with luau themed decorations. Though I was drugged up and not feeling well for most of my actual birthday, Craig was here to cheer me up with some games of Family Feud on the Wii and other distractions.

The engraftment of my sister’s cells has started and blood counts have begun to rise. My white blood cells are now at 2.5 and my neutrophils are 1.1. This means my new immune system is starting to grow and things are on track in that regard. The emerging white blood cells have helped to fight the many infections that I’ve had. My platelets and red blood cells are still low but holding. I haven’t required transfusions in the past few days. Previously, it was nearly daily that I was receiving blood products. To add some excitement, I had some scary reactions to platelet transfusions. So now, I need to be heavily pre-medicated before they transfuse.

I haven’t been able to pick up a book nor get through a movie without falling asleep. Somehow the days go by pretty fast, mostly working with the different medical professionals that come through this revolving door, and there’s a lot of napping. I’m nauseous, have been having diarrhea, and vomiting most days, sometimes many times per day, and getting very little bits of food down without it coming up. My stomach and back pain have been very uncomfortable. I can tell that my GI tract is a real mess from the chemo.

My legs and back feel very cramped up since I haven’t been able to walk more than back and forth across the room. I’m getting sick of being attached to a huge IV pole. There are many fluids running 24/7. This caused me to gain up to 15 pounds of fluid. In one night with a little over dose of Lasix, I dropped 8 pounds in just a few hours. This left me dizzy and light headed with nurses rushing to replenish my electrolytes. I am now back at my admission weight and it feels nice to not have all the swollen parts.

I miss my dog Sammy tremendously. I can’t wait to go for walks and cuddle with her when I get home. She has been staying at two wonderful “summer camps” at friend’s houses. The frequent photos and even a Skype session have helped keep me close to her.

Focusing on all that I have to return to when all this is over is a huge help. I daydream constantly about swimming, the beach, hiking, kayaking, picnics with my family, BBQ’s with friends, fire pits, camping, and smiling, laughing and joking without having any pain or discomfort to deal with. I dream about starting a family, becoming a better writer, driving my car, and being able to eat delicious foods whenever I want. I dream about exploring everything and being at the pique of carefree physical health.

The reality is that soon these side effects will stabilize and I’ll get a little bit stronger. I may be discharged as early as next week to recover at The American Cancer Society’s Hope Lodge in Manhattan. With that will be a whole new set of adventures, but most importantly I’ll enjoy some freedoms like being untethered, not getting woken up throughout the night for vitals to be checked, walking in crowdless places, and fresh New York City air. That will be nice.