Wednesday, November 21, 2018

Reasons to be Cheerful

Cheerful.  Thankful.  Either of them fits the holiday, in my opinion.

It's been quite a roller coaster in the year since last Thanksgiving.  A year ago, I was training in the gym regularly, I had more energy overall, and the cancer was more in control.  Yet, I have plenty of reasons to be cheerful or thankful.

First of all, I'm still on the good side of the dirt.  My health might not be where I'd choose it to be, but I'm still alive and kicking.  I just talked to my boss at Sugarbush and I'm planning to ski this coming Saturday.  A few weeks ago, just being able to ski was in doubt.  It won't be easy, but I'll be out there.

Thanksgiving tomorrow will be a fairly quiet affair.  Last year, I was in PA for Thanksgiving, celebrating with my brother, sister and uncle, and my uncle's extended "family".  This year, it will be my wife, my son, and my wife's parents.  That's it.  My sister-in-law is sick,so that cuts down on the crowd.  But, I'm healthy enough to cook for the people who will be there and I can still afford to put together dinner for a crowd.  I'll do so gladly.

I'm still employed.  At this time last year, I was on the verge of losing my job and I was struggling to find a new job.  It took a while to find a new job, and things haven't gone quite as expected at that new job in my first year.  At the same time, I had to tell a new employer that I had cancer and they've been accommodating of the situation.  I'm still getting paid, I can afford to pay my bills, and I'm thankful that I'm employed.

I'm thankful for the friends in my life.  In the past year, the people at my gym bound together and did a fundraiser for my wife and me, to help offset our travel costs for my cancer treatments.  We haven't had to travel a lot recently, so that money is set aside, waiting for the next time that we need it.  I'm thankful for the friends in my life, including the handful of readers that read this blog.  I know that I'm lucky to have the friends that I do, and I never take them for granted.  It's interesting how people react to a cancer diagnosis at times.  I've had people who have disappeared from my life since my diagnosis.  Others simply ignore that aspect of my life.  But, for the most part, my friends are actively engaged with me, concerned for my health, and they've been there if I've needed them.  That's something I never take for granted.

I'm thankful for my children.  My daughter is currently finishing up a semester in Spain.  She's had a great adventure there this fall.  My son recently started a new job and it seems to be going well.  I'm proud to call both of them my children.

Lastly, I've got my wife.  Her life has been made tremendously more difficult by the cancer.  I rarely drive any more and my wife has gladly stepped up to do the driving that I don't do any more.  She is cooking dinner more often, often cooking two meals when my stomach isn't up for the regularly scheduled dinner.  She never complains, even though I know it's a burden on her.  If our roles were reversed, I can only hope that I'd be there for her the way she's been there for me.  Having her by my side makes all of this tolerable.  I don't know where I'd be without her.

There you go.  As we approach Thanksgiving day, I have many reasons to be cheerful and thankful.  Despite the cancer, I still consider myself to be a very lucky man.

Friday, November 16, 2018

More of the same

I am fighting a terminal disease.  It seems to me that I should be out there every day, living life to the fullest, having new adventures, chasing dreams, etc.  But, the reality of life is much more mundane than that.  Don't get me wrong.  If I won the lottery tomorrow (not likely given that I don't buy lottery tickets), I would quit my job and start seeking out bigger adventures.  But, the reality is that I have responsibilities, a family to take care of, a job that requires I show up to work, and I can't just drop everything and go out chasing wild adventures.

Besides, I'm tired most of the time and I need my rest.  I hate to say it that way, but every week is fairly similar right now.  I start out Monday feeling pretty good, after resting for most of the weekend.  As the week progresses, I get more and more tired, and I find myself falling asleep earlier each night.  By the time Friday rolls around, I'm exhausted. And then, I rest up on the weekend, so that I'm ready to go again for the next week.

Last weekend, I got out of the house on both days, which is unusual for me.  On Saturday, I had my preseason orientation at Sugarbush, which took half of the day.  My wife drove me to the mountain and then picked me up.  After the orientation, we went out to the new tasting room for Lawson's Finest Liquids.  Regretfully, I stuck with water as others drank beer.  But, it was nice to be hanging out with my skiing friends again.

On Sunday, I had to go to Burlington to get a blood transfusion.  My hemoglobin levels were really low at chemo last Friday and for the first time, they wanted to do a transfusion.  In the end, I'm glad I did it, because it increased my energy levels for a few days, at least.

But now, it's Friday again, and I'm tired.  Sugarbush opened for the season today and I could ski this weekend, but I know that I won't.  Tomorrow morning, we have the Thanksgiving farmers' market to attend in Montpelier, and that will be my activity for the day.  I am hosting Thanksgiving for my wife's family, and I need to do my shopping tomorrow.  I am sure that next Thursday will be a challenging day for me; cooking for 9 people will take a lot out of me.  I'm working the next day (voluntarily) but at least I'm working from home.

Suddenly, it's the holiday season.  I have to figure out how to do any Christmas shopping this year with minimal effort.  It might be an Amazon kind of Christmas this year.

Actually, the biggest thing I'm looking forward to is my daughter returning home after her semester in Spain.  She has only been gone since late August, but she will miss Thanksgiving at home this year.  It will be her first ever Thanksgiving away from home.  She returns home on 12/14, late in the day.  It will keep me up past my bedtime, but I can't wait to see her that day.  Once she's home, then Christmas can happen.

Thursday, November 8, 2018

For now, it's status quo

I finally gave up on getting rapid resolution out of Sloan Kettering.  They were not answering my questions, and sometimes I had the impression that they didn't even understand that I had a problem in knowing what to do next.  The docs at Sloan Kettering set me up for a long day at the hospital on 12/4, and I'm just going to wait until that day to raise the treatment issues with them.  I wouldn't do it this way if I wasn't already in treatment, but I am being treated, so I'll go with that treatment for now, and hope it is effective.

I think that the radiation oncologist will be surprised when I meet with him and he finds out that the radiation hasn't happened yet.  He doesn't live in the world of insurance approvals and having bureaucrats run your life.  At the same time, I tried to work with his office to see what they wanted me to do, and I got nowhere,  So, they can't claim that they weren't informed of the problem.

This will be my first day ever at Sloan Kettering where I'm seeing a radiation oncologist, a medical oncologist, and surgical oncologist, and my last appointment is with both the medical and surgical oncologists together.  By the time that day is over, I should have my future laid out for me.

My insurance approval is good until April and my wife and I are staying on the same insurance policy next year.  So, the approval should be good for January if we do proceed with the radiation.

My new reclining chair at home has been quite a relief.  It allows me to relax comfortably in my living room, without hitting the same pressure points that my bed hits.  My fatigue is so bad these days that I felt like I was getting bed sores from laying down much of the time.  The chair has relieved some of the pressure points and I'm feeling much better just a week after getting the chair.  My wife is a genius at times.  Well, maybe all of the time.

This coming Saturday, I have my orientation day at Sugarbush for my 19th season of work.  As I mentioned in my last post, I tried to resign my position and they basically refused to accept my resignation.  My goal is to work within what my body can handle and have some fun.  I don't think that I'll ever work 2 days in a weekend, but I will try to work the more stressful days - opening day for the program that I work in, holidays, etc.  I'm glad the mountain was so open to accommodating my illness.  I think that's one of the advantages to working for a privately owned mountain rather than a mountain owned by a mega-corp.  Being an employee there really feels like home, and I really appreciate that my employers were open to a creative solution to keep me on the hill.

So, for now, I stay the course.  By the time I get to NYC, I will have finished 3 cycles of Eribulin, the current chemo drug.  That should be enough time to see if it's having any effects.  And, we are doing something, which is better than doing nothing, so I'm OK with waiting a bit to decide on the radiation.  I just hope the docs aren't surprised that the radiation isn't done.  I've contacted their offices numerous times to discuss this issue.