Monday, September 19, 2011

Homecoming and Day +95 Update

I took a blogging sabbatical for a bit as I got my head screwed back on. This is not to say that it's completely in place yet, but it's many rotations closer than it had been.

I'm home. I arrived home on Friday night, September 2. I spent the entire summer of 2011 away: June 9-September 2; A summer in The Big Apple. My last days in the city were spent packing with the help of my mom who stayed with me for the last week and put up with my incredible moodiness as my exit day approached. The last day was primarily spent at the Sloan clinic and waiting in the pharmacy for all of my drugs to go home with. I said an official goodbye only to the Hope Lodge programs manager whom I had grown close with and two men on my floor who wished me well as I cleaned out our shared kitchen cabinet. None of my close friends were out on the roof deck when I left, and I think it was better that way. I was extremely sensitive and in an emotional torrent.
I took one last look at the common area and the deck at Hope Lodge Manhattan and Craig rolled in after trekking to NYC after a day of teaching to load up all of my belongings and whisk me away in a matter of 15 minutes. It was like pulling off a Band-Aid. My exit was all business. I had no capacity to handle sentimental moments. We were all focused on getting me out of there. Hope Lodge had been the perfect solution for me during my convalescence period, but when it was time to go, it was time to go. I knew that the relationships I had formed there would remain – and they have.

My reaction to coming home was not at all what I expected it to be. I had no idea how fragile I still was until we pulled up our driveway. Except for the former brick front walk being now completely buried by grass, nothing had changed. This was comforting and terrifying all at once. I had gone through this tremendous physical and emotional transformation and by some strange logic, I thought that our house would have, too. It terrified me to think that I was expected to just slip back into the same roles, duties, place in the world that I was prior to leaving because internally it all had changed.

I sat in the car in the garage and sobbed as Craig began to unload a summer's worth of bags. I sobbed for a good long while, afraid to enter. I knew that behind the door was Sammy Dog slobbering and wagging away as also was our kitchen, our living room, our bed, but completely unexpectedly, I was so afraid to see them all.

I made it about a foot into our dining room entryway and Sammy hesitantly came over to sniff me. She had a bacterial infection, so it was especially important for me to not cuddle on her too hard. It was mortifying and heart breaking because I wanted her to know so badly how much I missed her but I was paranoid about contracting anything. I pet her with my latex gloves on and it just wasn’t the same not being able to feel the silkiness of her fur.

I was paranoid and uncomfortable with everything. My reaction took me completely by surprise. I was yelling and crying, nitpicking and breathless. It was too much all at once. The sense of responsibility and fear I felt walking back into our home was completely consuming. I kept yelling: “It’s too soon! I’m not ready!” I felt as if I had been crushed into a ball and thrown full force at the wall to splat and slither down to see where I landed on the bottom. It took me a full week to peel myself back off that floor.

A big solace in the homecoming scenario was the welcome home banners my friends had come in and created for me, the balloon and flower bouquets that they brightened the place with. They’d also spent days cleaning our home for us. As I walked into the kitchen Craig played a video for me of several of my friends dancing to a mix of “welcome”-themed songs right there in my kitchen the night before. It helped me to realize that no matter where I was at that point that my friends were there for me, and celebrating for me, even if I wasn’t ready to celebrate for myself.

I went into hiding for several days. I did not want to see anyone but my husband and my dog. I was angry, paranoid, confused, sad, and felt out of place. My family and friends have been tremendously respectful of that, and I realize now that I needed a mourning period. I’ve been home for two weeks now and my outlook and mental and emotional stability are much improved. I’m more comfortable in my skin again and once again feel at home in my home. It’s no longer a foreign, unyielding place, but

I’m realizing that it’s a place that’s accepting and safe. I didn’t know how I was going to function without the security of constant monitoring and isolation, but once I had a few days to test myself out, I realized that I was both stronger and weaker than I thought and it was just a matter of figuring out which areas needed to catch up. I guess I’ll call this my incubation period.

For several weeks I hated who I had become and how I was treating the people around me. I now realize that I was fragile and incredibly sensitive and I was rightfully so. I have been through as close to hell as I would ever like to go. Adaptation, processing and reevaluation will be a long haul, but I’m finally back to that point of self love and refocused on healing.

The mind shift happened around Day +80 or so. I got out of the streets of Manhattan, began walking around the neighborhood at home on my own and I drove to a local doctor’s appointment on my own. My independence was coming back along with my self-confidence and respect for the healing process. Then, on Day +87, September 11, I broke my foot. In a cruel twist of fate, just when I got back on my feet, I was literally knocked on my ass.

I wasn’t even doing anything cool or adventurous, which is the real kicker to me. I had just returned from a solo 1.5-mile walk and was standing on the edge of my driveway talking to Craig and our neighbor. Sammy was chasing after a ball and apparently I got in the way. She was tearing after it and I had my back to her so couldn't see it coming. She went to take the corner but her weight slammed right into me. Her height was at just the right level to take me out at the knees. Down I went, ass to the grass. The guys helped me right back up and I felt fine, just thought I had overextended my ankle a bit.

I looked down and saw a superficial cut on the top of my foot begin to bleed. When I realized that the top of my foot had rotated so much that it scraped the pavement I knew that wasn’t a good sign. As soon as I tried to walk on it the pain was incredible and my foot started to swell immensely. I cried and swore the whole way to the emergency room. This was not because of the pain – though that certainly contributed to the sobs – but more because I knew that it wasn’t going to be a good scenario and that the whole situation was just a slap in the face after everything I’d been through. It was a fluke accident that would set me back so much.

X-rays revealed that my left fifth metatarsal bone was fractured. The way it broke is also called a “Jones Fracture” or “Dancer’s Fracture.” It’s a very common break in athletes who over-rotate their foot while jumping or falling and the tendon ends up pulling off a piece of the bone. It’s a hairline fracture and all the other bones around it are in place, but it’s broken, just enough to be incredibly annoying. It’s been one week on crutches with my foot in a hard walking boot. I’m just getting to the point where I can bear some weight on it and limp around the house. I go up and down the stairs on my butt and get up and down with the help of the crutches. My upper body is still very weak from transplant, so it makes the whole thing extra difficult. No doubt I will have rocking shoulder muscles and a bulging right quad after all of these dead lifts and squats I’ve been doing.

The loss of my walking ability is incredibly discouraging. I also can’t drive as we own two standard cars and it’s impossible for me to operate a clutch. So, I’m at the mercy of others for another six weeks or so as this bone heals. There’s not much else to say about that … . I’ve never broken a bone in my 29 years, so why not now? The scenario was worthy of an SNL Weekend Update “Really?!?!” segment with Seth Meyers and Amy Poehler.

Other than that debacle, my intestines have been quite a wreck. I was having severe stomachaches, diarrhea, and lost my appetite completely. For the past few weeks, eating food has become a mental game. After just a few bites of anything I tried to force down, I would feel as if I could vomit. I shed another five pounds and now weigh less than I did coming out of the hospital. None of my pants fit and it hurts to sit without a cushion, as I have nothing but bones to put my weight on. It’s depressing, frustrating, and very, very scary.

This past Thursday it was decided to try taking me off of the Vorinostat chemo drug that I’m currently on in hopes that that was the variable causing the anorexia and diarrhea. If it is not that, then we need to worry about Graft vs. Host Disease of my intestines, which is a bigger issue. I have been off the Vorinostat for four days now and I feel hunger again. The debilitating stomachaches are gone and food no longer seems like an enemy. This is HUGE. I think that we found the culprit.

I am traveling back to Sloan-Kettering every Thursday for bloodwork and check-ups. The 3-hours-with-no-traffic drive is a lot and requires coordination of a driver as I’m not allowed on public transportation, nor can I drive myself now. Thank goodness for great family and friends. My reports have all been positive besides the stomach issues. My blood cell counts are at normal levels, meaning that my sister’s marrow is creating everything that my body needs. In the next few weeks we will check another PET Scan to see if it’s also eliminating lymphoma. All the signs are encouraging that it is.

The post-transplant fatigue is still tremendous and daily naps are a must, but this is to be expected. I’m coming to terms with it and beginning to better understand my needs and limitations. In the first two weeks home I wasn’t giving myself enough credit. I was mean to myself and frustrated with my progress, but now I realize I’ve done a damn good job and I’m so proud and feel so fortunate to be where I am. I am alive and functioning. There were times when I really questioned whether I’d ever get to this point. I need to be grateful for the path I’ve traveled.

The weather here in Connecticut has been something out of a Norman Rockwell painting. It’s perfect crisp, cool air that’s warm in the sun and brisk in the shade. The sky has been an untainted blue and the leaves are just starting to take on a tinge of bronzed color. It’s an ideal time for renewal and rebirth. I’ve come out of my timid shell and have started seeing friends again and enjoying being outdoors and am thrilled to “just be” with Craig and Sammy in my beautiful home listening to the birds from the porch and watching the rhythms and routines of the neighborhood. The broken foot has forced me to slow down and let my body catch up to where my mind is at. Maybe sometimes it takes a bone fracture to teach the ultimate lesson in patience.


  1. Horray for your sabbatical - blogging as you have done is nothing less than herculean-the time, effort and work of blogging, as you live through your experiences is momentous for sure -.
    May healing continue throughout your body - from head to toe (oh poor fractured foot) -
    And do enjoy the change is season as you change - how can you not change with all that has transpired.No change, no cherished times.

  2. HI Karin--Thank you for posting today! I can only imagine how traumatic coming home was.

    I think the broken foot sucks. On the other hand, it does force you to take it a little easy which your body needs. Maybe your foot broke because you are all bones (want some fat, I have about 10 pounds I'd love to share!) and the meds wreaked havoc and you are fragile. So what! As for needing help getting around, you might want to look into renting an automatic car--sometimes monthly rentals are not too expensive? Just a thought! Stay well, keep posting. You are in my thought. The other Karin Diamond!

  3. I've been felled by my dog hitting the back of my knees, too -- amazing how much force they generate when they're running full-speed. So sorry about the foot; that's just cruel on top of everything else you've been through. At least you're home and have the beautiful fall weather to heal in; it was 95 degrees in Houston yesterday! (Of course, we will be laughing at everyone else in January, when the sun is out, the grass is green, and we're wearing shorts...heehee!) Here's hoping that the foot heals quickly, the weight comes back to your battered body, and that there's nothing but smooth sailing ahead.

  4. I don't think I knew that you live in Connecticut, too. I'm in Waterbury, so I'm -- I believe -- about two and a half hours away from NYC. I've never drove there myself; I always take the train or, like a few years ago, went on a limo. Anyway, I think it's cool that we share a state.

    I'm glad you're recovering so well, albeit the fracture. That would definitely piss me off, but I like the positivity you've taken on instead of looking at it negatively.

    If you've already done this, ignore me and maybe just give me a link, but I think it'd be cool to read a post about how your sister is doing after the donation. I've heard that it's a difficult recovery as well, and I hope she is doing just as well as you (minus the foot, of course)!

    Hugs and love from Waterbury.