I see now why allogeneic stem cell transplants are not something handed out like free mints. There's a reason the doctors avoid this until absolutely necessary: it is rough, rough, rough.
Typical days have been full of really good moments and also some really difficult moments. My progress is like ocean waves. There are crests and dips. Sometimes the tide is in, sometimes it’s out. But what matters is that I am still undulating and moving forward in the right direction. As long as the overall trend keeps heading upward then I'm doing well.
It's not expected that at this point I'll feel fully back to myself, have the energy to get through the day unscathed, nor have perfectly normal bodily functions. But it's very difficult to not go crazy overdoing it when I do have days when I'm feeling well. It’s a constant balance of pushing the envelope a little bit then giving my body a big rest. This is a balance I've struggled with maintaining all during cancer treatment and now this is the ultimate test. As soon as I think I learn my capabilities, my body bites back and I get frustrated and am forced back a few steps: 5 steps forward, 3 steps back. But again, overall, I've been moving forward and that's what matters.
It's that damn patience thing that I have to focus on again. I haven't had a day yet when I got through the entire thing without having at least one crash. Craig explained that my days are divided into chunks: morning routine (7am-11am), midday (11am-3pm), afternoon (3-7pm), evening (7-10pm), nighttime. Inevitably at least one out of those five gets off kilter or is particularly difficult. Unfortunately, when and which one is not yet predictable. The side effects roll in like a freight train and knock me right on my back. I have a great respect for the energy and attention my body needs.
Eating has become much more enjoyable. I still have all of the antimicrobial food restrictions – which will continue for another four months at least – but we've gotten more creative with meals that are safe and taste good. Another big shout out to Trader Joe's prepared frozen meals. There are also some thick skinned fresh foods I can eat as long as they are thoroughly washed and peeled and cut without contaminating them: clementines, avocados, cucumbers and cut watermelon have allowed me to have a little taste of fresh summer. Pickles and bottled Kalamata olives have been a diet staple. My taste buds are back, so super harsh flavors make my mouth dance in happiness.
My energy is on the increase most days. I've been walking between 1 to 2 miles around the city. It feels great to be on the move, but again, I've got to go easy. We've had visitors come to see us literally just about every day, which has been wonderful to see fresh, familiar faces and hear stories from the outside.
Just a couple highlights among the many memories we now cherish: On Thursday, we met up with our friends Courtney and Bryan in Union Square who brought a teeny version of the lawn game corn hole for us all to play: it felt like an actual summer event.
Last night, along with our good friends Seth and Lisa, we heard the groovy bongo sounds of Guster – one of my favorite bands – perform at Summer Stage in Central Park. I say “heard” vs. “saw” because we stayed out of the actual concert crowd and instead enjoyed the music free of cost and germs on a blanket outside of the crowd barriers. It was a perfectly humid summer night complete with fireflies and easy laughs.
We've been testing out parks and hangout areas all over Manhattan. I'm allowed to explore outside as long as I have my mask and gloves on and steer clear of highly concentrated crowds. Indoor crowds (restaurants, movies, mall) are big no-no's still and will be for a while. Over the course of my month living on 32nd Street we've walked the Battery Park City walk along the Hudson, hung out in Bryant Park – where we also saw Broadway singers perform for free, Union Square, Central Park, Madison Square Park, the Highline several times, Koreatown, and much of the Upper East Side.
I did land back in the hospital for three days last weekend. That was not fun. I ended up with an infected Bartholin's gland in my lady parts. I was in excruciating pain from the swelling, hardness and pulses shooting through my groin and leg – pain to the point of tears. It's something that had been brewing for a while and went from superficial to infection very quickly. When chills set in I knew I had to call the Fellow on duty and not surprisingly, I ended up in Sloan's Urgent Care Center where it was decided that I needed to be admitted as an inpatient so that I could receive hardcore IV antibiotics.
I had a bad reaction to the first antibiotic they tried: Vancomycin. I’ve reacted mildly to this in the past, but this time around it was full blown “Red Man’s Syndrome.” My face and chest flamed red and blotchy, my lips swelled to Angelina’s size, and my head was covered in an itchy rash. Doses of Benadryl didn’t even eliminate it, and I suffered through the reaction – and the woozying Benadryl effects for the entire slowed three-hour infusion.
After they found some other antibiotic options the infection started to clear after just 24 hours of the IV drip and no less than a dozen medical experts, often three at a time, poking and prodding in my Nether regions (defined by Wikipedia as Hell, the Underworld, or any place of darkness or eternal suffering.) I'm on oral at-home antibiotics now and the issue is essentially gone and back down to size. It was pretty awful being back in the hospital though. I did not miss being hooked up to the IV drip and showering in a two-by-two shower after finally getting a taste of freedom. It was a necessary evil though, and I'm all better now in that department.
Craig and I have been taking trips to the clinic an average of three times per week, so I'm still being watched very closely. In fact, I'm here in clinic now as I write: a "quick blood level check and meeting with the nurse practitioner" has turned into a seven hour stint as I wait for a Magnesium boost. But it sounds like I don't have to be back in until Friday for a breathing treatment. I'd rather do one marathon day than five halves. That way, the rest of our days can be spent doing more enjoyable things than sitting in waiting rooms.
Our days have been so full and we have never been bored with lots to entertain us. Craig bike rides and goes to the gym and explores. I write and nap and people watch, walk, read, visit with other patients, and recoup. We’ve both developed a guilty pleasure of watching New York Live – a trashy and indulgent “news” show that conveniently comes on right at rest time each evening. That combined with Ellen the hour before are what I zone out and laugh to during wind down time.
A big recent highlight was getting to see Sammy The Dog this past weekend. Our friend Ryan, who has been hosting her at “Sammy Summer Camp” along with his girlfriend Serena and their dog Cody, picked us up and drove us off the island to Jersey where Sammy waited at his parent’s home. Craig has only seen her in short weekend glimpses and I hadn’t seen her since June 9 (but who’s keeping track?)
She’s doing so well and it was glorious to be reunited with her. I had to wear my gloves to pet her and couldn’t let her cuddle up on nor lick me too much … though a few kisses may have slipped through, but it was amazing to see her all the same. Ryan’s parents hosted a fantastic picnic lunch for us – my first home cooked meal –and we ate on the porch surrounded by the smell of fresh cut grass and the sound of birds chirping vs. car horns honking. The country air felt great and it was so relaxing to have the dogs relaxing at our feet and the weight of Sammy leaning up against me. It was a taste of home. The next day was very difficult having had that taste and again waking up in a bed that’s not my own.
We are both very ready to be back in our own space, but have made a home here nonetheless because no matter where Craig and I are, home is wherever we are together. So we’ll soak up NYC for at least a few more weeks while we wistfully dream about our own kitchen and bathroom that we don’t need to share with house mates.