We were back in NYC. Honestly, I know it's supposed to be the greatest city in the world, everyone wants to be a part of it yaddah yaddah yaddah, but I don't get it. I really don't. I fully realize that I have a connection with New York City that perhaps precludes me having a positive association, but nevertheless, even without that, I don't get it. It's crowded. It's dirty. It smells. It's expensive. It's freezing (in the winter). I mean, really really cold! Sleet flying into your face horizontally kind of cold. WHAT IS THE DRAW?
Anyway. I digress.
We were back in NYC. In December. I had five days of radiation (this is not a word with any synonym, so I have to use it, and just for your own edification, for me the word radiation is yellow and red, outlined in black, and very jaggedy--like the word POW! in a comic book). Dave and I were staying at Hope Lodge, which is run by the American Cancer Society. It's a no-frills kind of hotel for those traveling farther than 40 miles to NYC for treatment. MSK secured us the room, which was great because we were there the week of the lighting of the Rockefeller Center Christmas tree and hotels in midtown were close to sold out.
We checked in on Sunday afternoon, and were given a brief tour. We got to see the patient lounge floor (large TV room, small dining room, library, laundry room) as well as the shared areas on our floor (a quiet room as well as a kitchen for our floor). In the kitchen, every room had its own bin in the refrigerator as well as its own cupboard space, which was nice. We were going to be there for six days, so having space for our own breakfast foods and snacks was greatly appreciated.
The very nice woman who was showing us around also told us about the "community dinners" that happened every week on the patient lounge floor, in the dining room. During our week, there were several dinners being provided by various organizations--a taco bar on Monday, a Christmas Tree Lighting dinner and ceremony on Tuesday, and I think there was even a third dinner that week but I can't remember what it was. We nodded our heads as she invited us to join in, but my head was nodding out of politeness. I didn't have a huge interest in having dinner with a room full of... (I don't really even know how to put this into words because it makes me sound unkind and judgmental so please don't stop reading at the end of this sentence because I swear I somewhat redeem my attitude by the end of this post)... sick people. And yes, I get it. I am one of those people. Self-aware and somewhat in denial all at once. It's a great party trick.
So there we were. Ready to face the week. Not gonna lie--feeling a bit sorry for myself because I was having to spend seven days during the holiday season away from home.
Monday rolls around and Dave and I are having a late-night snack in the shared kitchen on our floor. Just the two of us. Until Ed walked in. He wandered over to the window and looked outside. It had been snowing all day. I think by that time it had stopped, but it was brutally cold outside. He turned back around and said hello to us, and the conversation began.
Turned out Ed was checking out the weather because he and his wife, Kelly, wanted to go home. They live in New Jersey--about 64 miles away from MSK. That's a very specific distance to mention. He explained.
Kelly was a "transplant" patient. Not organ transplant. Blood transplant.
Seriously.
The doctors at MSK had searched worldwide for a bone marrow donor for Kelly, and had found one, who only was a partial match. ONE. Kelly did rounds and rounds of chemo to kill off her entire immune system--all of it. They did the bone marrow replacement. And then the doctors transplanted someone else's cord blood. Which changed Kelly's blood type to the donor's (WHAT?!?!) and started to rebuild her immune system. As Kelly said to me the next night in conversation, "I've been to hell. And I've come back." Amen, sister.
They quite literally replaced her immune system and rebooted her blood so that the genetic mutation that was causing her cancer was not present anymore.
Mind. Blown. Ed summed it up, "It's like science fiction."
Now, back to why Ed was looking out the window and why it was relevant that they lived 64 miles away. Due to the serious nature of Kelly's procedure, and the fact that her immune system is severely compromised as it is starting to rebuild, she had to be within 60 miles of MSK at all times in case there was an emergency. So Ed and Kelly had been at Hope Lodge since October, because their house was four miles outside of the safety range.
They really just wanted to go home for a few nights. To their own house. Their own bed. Their own kitchen.
But they didn't. It wast late, and it was cold and icy outside, and Ed seemed to realize that perhaps this was not the best night to stage a break-out of the joint. He mentioned that they were hoping to head home, for good, in January. In about a month.
Ed thanked us for chatting and excused himself to return to his room, to Kelly.
Three months. Ed and Kelly were going to spend three months at Hope Lodge.
Hard to feel sorry for myself at this point. For my one week of treatment.
I know, I know, I know that one person's circumstances being very difficult really has no bearing on the impact of another person's circumstances. Your broken leg doesn't make my headache any less painful. Apples and oranges.
I realize that Ed and Kelly spending three months in NYC away from home does not make my week away from home any less frustrating for me. But it does give me pause. It should give me pause.
Sometimes it's important to see what you DO have, instead of what you don't have. Which is not always easy. It requires effort, because grievance often comes much more readily than gratitude.
But even I, the "glass is half full" girl, have to say that I felt like I got hit over the head with some mind-blowing perspective after a week at Hope Lodge. A week with Ed and Kelly.
Coming next... Ed and Kelly, Part 2: Dinner with Ed and Kelly
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