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 5th 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 12th floor corner “studio” with huge windows facing the gorgeous architecture of the buildings surrounding us on 32nd Street, nestled between 6th and 7th, 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.