"Never in a million years would I wish a rare cancer on anyone. But, I have to say that I've seen some of the most generous and kind acts from friends and acquaintances over the past couple years. It's easy these days, especially from a political point of view, to lose faith in each other and in the innate kindness of people. All I can say is that I've seen so much kindness in the past couple of years that I could never repay it all. I'm trying to pay it forward when I can, but this illness has really restored my faith in how we treat each other as fellow humans. Even little gestures can mean a lot; little things that may mean nothing at all to the person who does them can mean the world to me at times. The bigger kindnesses leave me awestruck at times."
So, my daughter had requested to come along to NYC for my next surgery. I'd like to think that she wants to be there to support me, but in reality, I'm pretty sure she would just love to make her first ever trip to the Big Apple. And, I'm OK with that. My kids are 19 (my daughter) and (almost) 24 and they have their own lives, their own goals, their own dreams. Their lives should not be consumed, as mine has been, by liposarcoma. I think the same of my wife, but as the spouse, she is stuck with it all. And, I say that light-heartedly, knowing that she is glad to be by my side most of the time. On occasion, when the anger escapes from my mouth, her thoughts might be different.
Anyway, my wife mentioned to a co-worker that she'd like to take the kids along on a trip to Sloan Kettering as additional support for me. That co-worker must have mentioned it to the bosses, because her company and her company's parent company, offered us some money to take the kids along. The thing is, while they meant well, the amount of money they offered was way less than it costs to take the kids. But, they meant well and I would never be anything but grateful when someone offers to help.
For everyone to go to the big city, we need to board the dog. We need four RT train tickets. Two hotel rooms per night rather than one. And, at this time of the year, NYC is simply crazy expensive. All of my overnight trips to NYC for this cancer have come in the November-March time frame, when travel is less expensive. This is prime season and hotel rates are very high.
People at our gym held a fundraiser for my wife and me late last winter. The purpose was to help with our travel expenses to Sloan Kettering. We used about 60% of that money for a series of trips in November, December and January, but we still have $2K left. So, I told my wife that we'd find a way to make it work and take everyone along.
To be honest, even though I agreed to this, I had (and still have) my concerns. My company is not doing well financially, and I could lose my job this summer. This is not exactly an ideal time for me to be looking for a job. So, we are at risk there. Our medical debt from the past 4 years or so is staggering. So, money has been tight. I bought a new fly rod recently, but unlike in the past, where I could simply do something like that, this time, I sold another of my fly rods to pay for the new one. We are sort of living like the federal government talks about at times. Every new expense needs to be offset by some savings somewhere else.
Yet, and this continues to amaze me, things all just kind of fell into place. I can't explain it, I'm not sure I even want to know, but a grim situation has simply turned around, and it's all working out.
I mentioned to my therapist recently that we wanted to do this and how I didn't want to disappoint my wife and children. She asked me if I knew about a fund at the University of Vermont Medical Center to help cancer patient with financial issues. I knew nothing about it, so she gave them my name. The next day, I had a phone call to talk about things. And then, they agreed to pay for our train tickets. All four of them. No paperwork or anything. Just a little bit of history, our plans for the trip, and the money gets allocated.
I was really struggling with hotel rooms. My normal destination, the hostel at the Upper West Side YMCA, was booked solid. It wasn't a matter of paying full price of $120 for their dorm-like rooms instead of the normal $60 rate I get. They had no rooms at all. Most of the hotels that Sloan Kettering works with were full or nearly full. The best I could find for the rooms we needed (9 total rooms over 6 nights) was close to $3K. When I had been expecting to pay one quarter of that, this was very disheartening.
I did find that a sister property of one of those listed by Sloan Kettering has cheaper rates. Not cheap, but cheap enough by NYC standards. Our rooms for the week would be $2107. Not nearly as cheap as the YMCA, but not $3K either. Or, one of the hotels had offered to put all of us into a single suite. For $4K per night. We passed on that one. So, for a price that exceeds my mortgage, I was able to find some rooms for us. They were crazy expensive to a country boy who lives in VT, but I've been assured that I got a great deal for Manhattan at this time of year.
I mentioned this cost to the social worker I was working with at Sloan Kettering. She mentioned a patient assistance fund that they have, and told me how to apply. Only my personal expenses can be reimbursed, but any help would be welcome. I told her that I thought it wouldn't work. Our income is high enough that I thought it would be too much. But, when she asked for our household income number, she insisted we apply. Our income might exceed the average here in VT, but it's a pittance compared to what it costs to live in NYC.
My wife filled out an extensive form last Thursday. I remained sure, given our total income per year, that we would be ineligible. But, they really look at your whole financial picture, including debt, and especially medical debt.
I gave them the completed form on Friday morning. Monday morning I was informed that I'd been approved for the program. We talked about what expenses were specific to me - my room, my food, etc. I had been honest that train tickets were already covered and I didn't try to double-dip on that. By yesterday afternoon, Sloan Kettering had agreed to give us another $827.
So, we suddenly have well over $2K in new funds - from hospitals and employers. I had no idea that funds like this existed. Add in the remaining money from our fundraiser, and we can easily afford to take everyone to the city for a few days. My wife's birthday is during this trip, and I'm hoping we can get out for a nice dinner on her birthday. Two days before surgery, this would be a great way to celebrate.
We are going to send the kids home right before my surgery. My wife has enough to worry about during the surgery itself and the immediate post-surgical recovery. We decided it would be an additional stress to have to worry about the kids during that time. But, they get three nights in the city before my surgery. We have some plans to visit museums, walk a lot, and eat at a few of the nicer (but affordable) restaurants that I've found on my prior trips to the city. I am going to work remotely for part of the trip, and I think my family has plans to visit the Village, SoHo, Little Italy and Chinatown. In one day. I wish I could go along on that day, to be honest.
We are even going to try to get same day tickets to see the Late Show with Stephen Colbert. My son and I saw a live broadcast of his old show, and people think it would be fun to see him again.
I'm not a religious person. I'm not a praying person. I'm not a believer in karma or other unseen reasons that things happen.
Yet, right this moment, I'm amazed at how this has all happened. An idea was hatched, it was honestly too expensive, and then it all somehow worked out.
Hopefully, good news like this will extend right through my surgery and recovery.
And in the interim, I am full of love and gratitude to the point of giddiness.
The universe can be a cruel place. I have too many friends with cancer at the moment to not see that cruelty. And at the same time, there is so much goodness out there that leaves me awestruck. I'm reminded of some lines early in the movie American Beauty:
Lester Burnham: [narrating] I had always heard your entire life flashes in front of your eyes the second before you die. First of all, that one second isn't a second at all, it stretches on forever, like an ocean of time... For me, it was lying on my back at Boy Scout camp, watching falling stars... And yellow leaves, from the maple trees, that lined our street... Or my grandmother's hands, and the way her skin seemed like paper... And the first time I saw my cousin Tony's brand new Firebird... And Janie... And Janie... And... Carolyn. I guess I could be pretty pissed off about what happened to me... but it's hard to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm seeing it all at once, and it's too much, my heart fills up like a balloon that's about to burst... And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain and I can't feel anything but gratitude for every single moment of my stupid little life... You have no idea what I'm talking about, I'm sure. But don't worry... you will someday.
While I don't buy into the mysticism that Lester refers to here, I do see beauty in the world. I don't understand why things work the way they do. I don't know why I get to be the kid who gets the weird cancer. But, just like the Facebook post that opened this blog post, or the quote above, I'm amazed by the beauty I see in the world. Cancer may kill me eventually, and I would never say that getting cancer has been a good thing.
But, I have learned so much from having this disease. I've learned to see the world in a completely different way. And, gratitude. I'm so full of gratitude for the life I've already lived, and for the little things that keep falling into place.
I'm an unlucky man. At the same time, I'm a very lucky man..