Day +110 Recovery Update

With one of my best friends, Meredith, at her 

recent engagement party.

My foot is still broken, which means it’s still in a walking boot. I have been toting around an extra 1.5 pounds for three weeks now. There is a lot of Velcro strap tightening involved and a lot of heel-toe hobbling. However, like Forrest Gump, I have shed the crutches. I just won’t be running to the West Coast anytime soon. Instead, like my favorite Jersey Shore gorilla, Ronnie: “Every Day I’m Shuffling.” Cue club music.

I return to the orthopedic doc tomorrow to check on the bone healing process. I can just about put full weight on it now so I expect he’ll say that it’s healing well. This is a far cry from several weeks ago when I could not go up even our shallow porch stairs and in order to bathe, I had to sit in a plastic patio chair that Craig squeezed into the shower tub for me. I’ve been consuming a lot of soy protein and started up on Calcium plus Vitamin D supplements in addition to my multivitamin, folic acid and Magnesium that I’m already on per post-transplant needs.

On the subject of meds, the amount that I take is becoming less and less as the weeks pass. I am now down to 19 pills a day: Acyclovir for anti-virul prophylaxis, Coreg for my heart, Ambien to sleep, and Tacrolimus and Sirolimus immunosuppressants in addition to the nutritional supplements. None of these causes me any unwanted side effects, which is a very refreshing concept. I have continued to avoid any signs of Graft vs. Host Disease (GVHD) and with each week that passes without it, we’ve been dropping the amount of immunosuppressants that I take, continuing the careful taper off of these important meds. At this rate of shedding 0.5mg every week, I will be completely off of suppression in about a month and my new immune system will be fully raring. So far, my sister’s cells and I have been syncing perfectly.

I feel wonderful. I really, really do. I think that it can be seen outwardly, too. There were many months there that I either avoided mirrors altogether, or when I caught my reflection was completely confused by the stranger staring back at me. Now, my eyelashes and eyebrows are fully back: lush as ever. My hair is slowly but surely coming in, though it’s very spotty. It’s coming back in some kind of reverse balding pattern. I can only hope that it’s not a permanent problem, though there aren’t any guarantees. If it’s my hair follicles that gave up, but the rest of me keeps ticking then I really can’t complain about that. In the meantime, I’ve been wearing a wig when I go out. It was cut and shaped for me by a stylist in NYC who volunteers his time at the Hope Lodge to help reshape the free American Cancer Society wigs into styles more appropriate for each individual’s face. I actually kind of love it: it’s a messy pixie cut ala Halle Berry. 

I have also been gaining weight – 1.5 pounds in one week – and am starting to fill out a little bit so that my bones aren’t jutting out of my skin. When I dropped to 105 pounds things became unsafe. Dr. Sauter got very concerned and I could not take looking at the shallow dips of my sunken cheeks. We had to consider options. After removing the Vorinostat chemotherapy pill from the equation, eating became much less traumatic. No doubt that the drug was causing me anorexia. I literally could not face food nor stomach it and had no appetite whatsoever. It was an awful and debilitating process to go through. Now, I feel hungry again and I eat. My bowels are beautifully formed and easy out. It’s a little celebration after so many months of agonizingly painful stomach cramps and diarrhea. I think it’s safe to say that my intestines are finally healed.

I am still missing 30 pounds, but I’ve purchased some pants that actually fit my new frame, and this has done wonders for my mental state about it all. I no longer look like a coat hanger holding up my too-big clothes. A day at H&M with my mom did wonders for my spirit. She carried all of the potential new outfits around for me while I swung through the clothing racks on my crutches wearing my anti-germ gloves and helped me get in and out of the pants in the dressing room while balancing on my one good foot.  Now I have pants that don’t sag off my bum and a couple skirts that don’t literally fall off my hips.

Mentally, I am clearer than I have been in two years. My mind is again quick and forward thinking. I can grasp concepts and no longer find myself in that foggy-headed confused state that is chemo brain. I am flying through books and doing a lot more writing. When I have conversations with people I feel more connected, alert and engaged. Activities are much more enjoyable when I don’t have to put on an act or focus so much energy on simply standing up. My head is so clear that I plan to start back up at work (from home) later this month and have been in touch with my team there about projects that I can tackle. I look forward to the structure that will provide and to the opportunity to once again learn, think, collaborate and produce. I don’t want my brain to go to mush and I want to get back to contributing my talents to the greater society. Working in hospital communications, I look forward to putting all of this medical jargon I’ve learned and experiences I’ve endured as a patient and observer to good use.

I am also driving myself around to local appointments and errands again. My brother- and sister-in-law were generous enough to swap cars with me so that I can now roll around in their automatic Jeep Cherokee. It’s so incredibly liberating and has taken away that mental stigma that I was once again trapped in one space. I have learned through this process that I am a wildly independent person with a penchant for freedom. I have no problem hoisting myself in and out and my bum left foot just rests to the floor mat while my right one does all the brake/gas work. I am so grateful to Eric and Rachel for bringing it all the way down from Massachusetts for me without me even asking: they just immediately suggested it when they found out I couldn’t drive my stick. There’s not much in life that beats driving with the windows down and sunroof open singing at the top of your lungs on a perfect fall day. Sometimes I even do an extra spin around the neighborhood to “check on things” on the way home from the pharmacy.

Emotionally, eh, well, we’re still catching up in that department. I can go from zero to 100 in a millisecond. I’m still very sensitive and very scarred from the trauma I went through. I cannot really talk about the intimacies of my transplant experience without developing an incredible lump in my throat. I cry often at very little things. I also get very happy and very relaxed and content. I also get very angry. I do a lot of screaming and lashing out. It doesn’t take much to send me into a tizzy: I can’t handle overstimulation nor clutter nor negative energy in my life. I’ve grown more opinionated and less tolerant of idiotic people and need to work on that. But overall, I am so incredibly elated to be where I am. Right now the highs and lows are just a little extreme. I’ve turned rather crazy, but I kind of like it sometimes. I’m more in touch with and aware of everything that I feel and think, which obviously lends itself to positives and negatives.

There is also the compromised immunity piece. I am anal with the cleaning and disinfecting of our house and on my husband about it pretty incessantly; what a nag I’ve become. I’ve tried to go into restaurants a couple of times and had full-out anxiety attacks seeing everything and everyone as germs carrying the airborne illness that I’ll no doubt inhale and not be able to recover from. Paranoia is a big problem, and I’m still working on the balance of living my life again, while keeping myself safe and sane. These are legitimate concerns as my immune system will be immature for at least another nine months and I am without any of my childhood vaccinations. Though the mask and gloves are gone except for at the clinics, a bottle of Purell is never far from me. I think I am doing pretty well with it all though. It’s just about making educated choices and sacrifices. It doesn’t help that when I start eating a bit of raw vegetables again, dozens of people die from e. coli and lysteria outbreaks in Romaine lettuce and cantaloupe. I’m back to frozen spinach for a while.

My Dad used to be a body builder in his younger days and he gave me his heavy bag to hang in our garage. I need to get some boxing gloves so I don’t shatter my hands … and then I plan to punch the shit out of it. When I get out of this walking boot, I then plan to kick the shit out of it. Then, I will do both at the same time. He’ll help Craig get it hung and give me a lesson on how to properly punch. This will be good for my anxiety and frustration as well as my arm and back muscles and cardio endurance. Today I started an ab and arms regimen with exercise bands and the ball. I miss walking and hiking terribly, but I’m sure I’ll be back at it again in a few weeks – just in time for the ice, snow, and freezing temperatures. Maybe I’ll be back on skis this year?

On the opposite extreme, I made it back to the yoga studio yesterday for the first time since I’ve been home. Immunity precautions and then the flight of stairs had kept me away. I had to make a few modifications around my broken foot, but was able to wrap it in an Ace bandage and still benefit from most all of the poses. The class was a gentle yoga class and maybe even more so than the stretching, it was great to share a meditative space with others and to get my stress in check and get back to a centered place of peace, at least for that 90-minutes of time. It’s difficult for me to be that disciplined on my own.

This Thursday I return to Sloan-Kettering for a check-up/check-in with Dr. Sauter. We’ll go over questions and he’ll look me over for anything that might be concerning. I’ll also receive my monthly Pentamidine treatments to prevent PCP Pneumonia. Last week he gave me a bi-week and I only had to get bloodwork checked locally. All looked stellar: WBCs 3.8, Platelets 147. I hope this warming trend continues. 

“Maybe I'm crazy

But laughing out loud

Makes the pain pass by

And maybe you're a little crazy

But laughing out loud makes it all subside.”

-Dave Matthews Band, “Spoon”