Friday, June 23, 2017

On the mend

I haven't really thought about doing an update here for a while.  I got a card from a friend yesterday that mentioned my blog, and I suddenly tried to remember when I'd last done an update.  I didn't check until today, but it's been a while.

When I last posted, our trip to NYC was getting close.  We had no problems there, and the first part of the trip, with our kids, was a lot of fun.  The kids weren't crazy about the tiny size of their hotel room, but they weren't paying any of the bills, so they were stuck with it.  The rooms, in their defense, were small, but the rooms were clean and comfortable.  I will definitely use the Pod Hotels in the future for travel to NYC.

We got to the city on a Saturday night and walked to our hotel.  From there, we used Yelp to help find a place for dinner.  We ended up at the Park City Tavern, and our meal was fine.  In some ways, it was the least interesting meal we would eat in the city, and we still managed to spend over $200 for 4 of us.  But, there was nothing wrong with diner; it simply wasn't great, and in NYC, at the prices you pay, I have very high expectations for restaurants.  I'd probably give it 3 stars on Yelp, but  I haven't bothered to review it.

On Sunday, we got up relatively early, got some coffee and breakfast and then walked to the Metropolitan Museum of Art.  It quickly became apparent that we had different interests and different speeds of moving through the museum, so we would split up for a while, meet up, and then split up again.  We managed to stay busy right until the Museum closed at 5:30.  Everyone would have stayed longer if we could have done so.

Outside, it was raining, so we waited under cover for a while.  When it became clear that the rain was with us for a while, I finally got us a cab to Columbus Circle and we walked to Rosa Mexicano by the Met for dinner.  I'd eaten there twice before, and thought the family would love the authentic Mexican foods to be found there.  Certainly, no one complained and plates were emptied, so I think everyone had a nice meal.

As we left the restaurant, the raid had ceased, and our hotel was almost a straight shot on Broadway.  We used this as an excuse to walk off dinner, but also to see all the sights on Broadway that my daughter had never seen before.  We even made it to our hotel room in time to see the Warriors pull away from a close halftime score and take a 2-0 lead in the NBA finals.

On Monday, I worked remotely, while my wife and kids visited lower parts of Manhattan - mostly Little Italy and Chinatown.  They had a fairly relaxing day after being on their feet all day the day before.

That night, we ate dinner at craft restaurant, and it was just amazing.  I was somewhat torn on dinner here this night.  A friend and blog reader had very generously offered to pay for our dinner.  But, my kids, despite being college aged, know their way around a high priced mene pretty well, and my wife and I are veterans of fine dining.  I knew the meal was going to get expensive.  Part of this is the nature of the restaurant we'd chosen, but part of it is simply the love of fine food that we all share.  The meal started with some foie gras (that one was my fault), a salad and some Champagne.  It was the first time I think I've ever seen my son have a drink in a restaurant like this, and he seemed to enjoy the Champagne immensely.  I had purchased just a half bottle of the Champagne, but it was gone quickly.  From there, my wife and I drank wines by the glass.  Bottle prices are simply prohibitive here.

After that, entrees included halibut, steak for two of us, and quail.  All entrees here were a la carte, so we added some wild mushrooms, some grilled spring onions, a potato puree, and a risotto.  I had to laugh a little bit at the risotto.  The owner of the restaurant is one of the judges on the TV show Top Chef, and while the risotto was good, it would have failed badly on the TV show.  Every characteristic that Tom Colicchio uses to fault risotto was present here.  So, while we enjoyed the flavors, we wondered if the owner of the restaurant would have approved of the dish.

By now, you'd think everyone was stuffed, but everyone seemed to find something for dessert.  Some of the choices included semifreddo, donuts, house-made ice creams and a classic souffle.  And, for my wife and me, a nightcap.

We never saw the bill from the evening.  But, from my friend's reaction, I know we ate better, or at least more expensively than he'd anticipated.  This made me feel a bit like a freeloader, although I promised to make it up to him one night after skiing next winter.  Maybe I'll cook for him and his family and open some nice wines from our basement as a a thank you.

After dinner, we walked back to our hotel and everyone said goodnight.

The next morning, my wife and I were up early, as I had medical appointments all day  And, with the medical part of the trip looming, the kids were heading home.  Somebody needed to rescue our poor dog from the kennel and that fell to the kids.

I'll write more about the medical stuff and a very nice dinner for my wife's birthday next time.  The vacation part of the trip is easy to write about.  The medical part is way less fun.

Thursday, June 1, 2017

Hard to figure out my workouts

On Tuesday, I was coming off three rest days where I'd slept a lot.  My two previous CrossFit workouts had gone reasonably well, so I was optimistic.  And then, I really struggled the entire workout.  We started with front squats and then back squats.  I did OK on them, although I kept the weight very light on the higher rep sets.

Then, our metabolic conditioning piece was 10 minutes long, a blend of rope jumping, very light deadlifts and shoulder-to-overheads (this can be strict presses, push presses, push jerks or split jerks - however you want to do it).  I honestly rested for at least 5 of the 10 minutes we were supposed to be moving.  I simply couldn't catch my breath.  I am probably still slightly anemic from the chemo, but this was more than that.  It could be fatigue caused by the cancer itself, an ongoing side effect of the chemo, or maybe something else.  My fitness has definitely decreased since I started chemo in February, so maybe I'm just not fit.

But, the end result was frustrating.  On a day I expected to have a good workout, I had anything but.

When I looked at the scheduled Wednesday workout, I wasn't happy.  Our Wednesdays have been hard recently and I expected that.  I didn't expect to have 80 or more burpees in our 40 minute workout.  We started with 10 bar holds (knees up as well) in the first ten minutes.  Then, 4 minutes alternating burpees and kettlebell swings.  Rest one minute.  Repeat the 4 minutes.

Then, 10 minutes of 2 push presses per minute.  Then, rest a minute.

Then, 4 minutes of burpees and wall balls.  Rest a minute.  Repeat.

I've really been struggling with burpees recently.  It's a whole body movement that requires a lot of oxygen, which I'm struggling with.  Also, my side, where the cancer tumors are located, is not happy when I do them.  They basically create some pain in my abdomen.  And, from the rep schemes, the minimum number of burpees was going to be 80.  My wife ended up doing about 100.

So, I spent most of the day planning to skip the workout.  Eventually, it occurred to me that I didn't have to do burpees.  I could change things and still get a good workout.  I decided on 16" box step-ups instead of burpees.

I went to the gym.  Still nervous after the day before.  I survived the warm-up.  Got my equipment set up.  And, I got started.  And, for some reason, my moderate effort - sort of a slow, methodical approach - worked just fine.  It wasn't easy, but I got through the workout without feeling like I'd been run over by a truck.

I have no idea why Wednesday, a harder workout than Tuesday, went so much better.  I'm just glad that it did.

Today is a rest day.  Tomorrow will be my last CrossFit workout for a while - possibly six weeks or so.

And, on Saturday, I head to NYC to start the process for my surgery next Thursday.  The surgery is only a week away right now and my anxiety levels are climbing.  Open abdominal surgeries are never trivial and this surgery could last up to six hours.  I will be in the hospital, recovering, for at least a week.  There will be a lot of pain involved.

Next Friday, the day after my surgery, at some point in time, a cadre of nurses will descend on my room.  Their goal will be to get me up and walking.  It will hurt like hell, but they won't take no for an answer.  The walking gets better each day.  I understand why they want me to do it.  In just a few days, I'll be walking multiple miles around the floor each day.  But, that first walk is terrible.  Having a Foley catheter is unpleasant.  Well, the catheter isn't a terrible issue.  It's having it removed that I don't like.  Sometimes, it just feels weird.  Other times, it can be truly painful to have it removed.

So the surgery is getting closer.  But first, I have a few days to hang out with my family in NYC and enjoy the city.  We have some nice dinner reservations and plans to visit some museums.  I'm just going to walk a lot, enjoy the time with my family, and not think about the surgery, if that's possible.

Tuesday, May 30, 2017

Still a bit tired

I made it to the gym on Monday, Wednesday and Friday last week.  The latter two workouts were the best I've had in awhile, but they left me exhausted for the weekend.

On Saturday, my wife and daughter and I had a bar mitzvah to attend in Saratoga Springs.  It was a great chance to see some friends that we don't get to see often enough.  In between the ceremony and the celebration that evening, our friends invited us to hang out at their house for the afternoon.  But, the tiredness won out and I napped all afternoon while my wife and daughter went shopping.

That evening, we left the party before it officially ended.  In the past, with these friends, I would have always been the last to leave, but my body just isn't there right now.  I do think that my wife is enjoying my abstinence from alcohol.  She is our designated driver more often than I am, but these days, I do most of the driving, allowing her to relax and have more fun at times.

On Sunday morning, we slept in and then checked out of our hotel.  We went to a nearby Mexican restaurant that my daughter loves, and I simply couldn't eat.  I sat there while my wife and daughter ate.  This is happening to me more and more often these days, and it's similar to when the cancer first made its presence noticeable in my life.  If I have some medical MJ, I'm hungry and I eat just fine.  Otherwise, I have zero appetite, and often, the only thing that tastes good is sweet foods.  I've now lost about 15 pounds since my chemo started, and the weight loss has been accelerating.  If I wasn't ten days away from surgery, I would be very concerned about this, but with the surgery coming up next week, I think I can put up with it for a little bit longer.

I dozed on the drive home and then took a real nap when we got home.  I woke up at 6:00 p.m., realizing that I had to mow the lawn.  It was supposed to rain all of Monday, and I had no other time to mow before we leave for NYC.  The lawn was a bit wet, but I managed to get it mowed.  It will be a couple weeks until it is mowed again, and my poor wife will be mowing that time.  It might be a couple months before I'm on the lawn tractor again.

After mowing, I managed to eat some dinner and we watched episodes 3 and 4 of Twin Peaks.  To be honest, I think the medical MJ enhanced both of those experiences.

On Monday, I slept in late again.  Napped in the afternoon.  I basically did nothing, to be honest.  I got 14 hours of sleep between the night of sleeping and the nap, so I'm guessing my body is still not recovered from the chemo.  Or perhaps these are effects from the cancer itself.  Either way, I was tired and I didn't fight back.  I just went with it.

I was almost happy when I had a hard time sleeping on Monday night.  I was hoping it meant that I'd slept all that my body needed.  This morning, I didn't sleep in the car on the way to work either - another thing I've been doing recently.  So, maybe my 37 hours of sleep over the weekend (according to my FitBit) were enough.

I'll find out at the gym tonight, I suppose.  My goal for this week is to do CrossFit on Tuesday, Wednesday, and Friday.  That last day will be my last CrossFit workout for six weeks or so, so this is my last chance to get any real training for a while.  For the first month or so after surgery, I will be limited to walking and maybe the stationary bike.

My previous post was about gratitude.  Since I made that post, my wife and I have received two more wonderful gifts.  One was an offer of a dinner in NYC from a skiing friend who reads my blog.  He even suggested a restaurant that I've wanted to visit in NYC for a long time - Craft Restaurant.  Well, he suggested two places, and I think that I picked the more expensive of the two.  I'll be sure to stay away from the ribeye for 2 at Craft - a $150 entree.  If I felt 100% healthy and I was paying for this myself, that would probably be something I'd like to try.  But, on someone else's dime, there are plenty of other great options there.

Also, my wife's co-workers gave her a gift to pay for dinner on her birthday, which is two nights before my surgery and the night after our kids head back home.  So, we are going to try one of the top bistros in the city - db Bistro Moderne.  In 2000, two nights before the NYC marathon, we had dinner at Daniel, one of the top restaurants in the city.  It was an absolutely amazing meal, despite the fact that I had a cold and couldn't taste everything properly.  The bistro is owned by the same chef - Daniel Boulud, and we are looking forward to our dinner there.

For both of those meals, I may need a little bit of my medication to make sure my stomach is in the mood to eat.  After the dinner on my wife's birthday, I won't be eating again for over a week, so I'd better make that last meal for a while a good meal.

So, we are headed to NYC on Saturday.  I am, of course, nervous about the surgery portion of the trip.  There are so many reasons that surgery is unpleasant.  Catheters, the early extreme pain, experience of "coming to" from general anesthesia and feeling that post-op pain for the first time, the compromised breathing, and the nurses who force you to get up and walk while you still hurt like hell.  I've been through it enough times to know what to expect, and I'm not looking forward to it.

But, thanks to some charities and some friends, we are going to have a really fun few days in NYC before the surgery, and I am very much looking forward to that part of the trip.  The rest is simply something that I have to do, and I will get through it the best that I can.

I remain filled with gratitude that we have the support and friendships that we have.  I know other people afflicted with this same disease, who have gotten no support from spouses, parents, or siblings.  I've gotten nothing but love from the people I know, and every bit of it is appreciated more than people can realize.

Tuesday, May 23, 2017

Gratitude

This post is really an extension of something I wrote on Facebook yesterday.  Here is the post that I made there:

"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..

Monday, May 15, 2017

Sleep Comes Down

If anyone can possibly guess where the title of this post comes from, I'm not sure what the prize should be.  I'd suggest that I could offer my 12" vinyl version of the Psychedelic Furs' song Sleep Comes Down, but I don't want to part with it, to be honest.  And now, I've answered the question.

SLEEP!!!

That's all I do any more.

I slept almost 80 hours last week - almost half of the week.  I had one day where I only slept 8 hours.  Over this past weekend, I slept 29 hours in a 39 hour period.  I did sneak out fly fishing for about 4 hours on Saturday.  It was fairly easy fishing, yet it took so much out of me and I took a 4.5 hour nap to recover from the fishing.

Today is 2 weeks since my last chemo session.  The last time I went 3 weeks without chemo, I couldn't stay awake that third week.  I'm hoping that's not the case this time.  I'm hoping this is the week that I turn the corner and start to see some improvements in my mental and physical capacity.

With the chemo over, and surgery in 24 days, I really want to be in the gym, training as much as makes sense.  I think this will help with my surgical recovery as it has in the past.  So, no matter how tired I feel these coming weeks, I'm going to try hard to get to the gym or get out walking with the dog.  Right this minute, I've done one half-assed CrossFit workout in the last 9 days and nothing else.

Fishing isn't exercise.  Mowing the lawn (from a tractor) is not exercise.  Cooking dinner isn't exercise.  And, napping for 1-6 hours at a time is most certainly not exercise.  I am honestly amazed that anyone can tolerate this chemo and still live anything resembling a normal life.

Regretfully, an acquaintance in CA is just starting this chemo for the same reason that I did it, and I think I've scared her with my stories about fatigue.  I certainly hope things go better for her.  She is doing this in a more traditional method - every 3 weeks rather than 2, and a Neulasta shot between every round.  I hope that gives her the energy to thrive through the next few months.

Otherwise, there is nothing new.

I still can't seem to catch a fish to save my life.

I'm working on my travel plans for my surgery.  Working.  And, napping whenever I get the chance.  I never imagined I would be a person capable of sleeping this much, much less wanting to be asleep this much.

But, this is a different chapter of life and things are just different right now, I suppose.

For now, I will just go with the flow.  I know the fatigue will start to fade soon.  My anemia will resolve.  My other blood test results will start to trend towards normal.

And then, just as I start to feel decent, they are going to cut me open.  But, right now, I have 24 days to get ready for that event, and I plan to do that the best I can.

Thursday, May 11, 2017

Things falling into place - a few rambling thoughts

I got a call from my surgeon Monday night at home.  Yes, that's correct.  A top surgeon, a department chair, a world class specialist from one of the top cancer centers in the world spent Monday doing surgery, and then took the time to call me at home to follow up on my care.

He had finally had a chance to read my latest CT scan.  In his opinion, there is no need to do two more rounds of chemo.  He wants me to heal up - let my immune system recover - and then move to surgery.

We talked for maybe 10 minutes, and at the end of that time, we had selected a surgery date.

I will get to NYC on 6/5, have some pre-op testing done on 6/6 (not a very exciting birthday for my poor wife), and then do surgery on 6/8.  I will probably stay in NYC until the 18th or so.

So, I'm going to have to skip a couple concerts.  I'll get over that.  I have to skip a short fly fishing trip.  I'll get over that as well.  I will miss about a month of trout season.  Oh well.  There are simply priorities in life, and living through cancer is one of them.

My wife's company is talking about sending our entire family to the big city a couple days early.  I'm not sure who would pay what, but all four of us would go, stay in a hotel, enjoy the weekend before the surgery, celebrate my wife's birthday, and then the kids would come home when it got time to deal with the real medical issues.

Over and over through this ordeal, I've been overwhelmed by the generosity of the people in our life.  My wife is really an amazing lady.  Upbeat.  Positive.  Always willing to help others.  And, it gets paid back to her in spades at times.

Currently, my primary care provider is on maternity leave.  I needed to see a primary care provider this week for a minor medical issue related to the cancer.  Not a big deal, but it did involve pain medicine, and unless people are living under a rock, they know that pain meds are a big issue these days, even for cancer patients.

So, I met a new provider today.  She did a full "systems" check.  How is my wife?  How are the kids holding up?  Do I have the support I need?  Is there anything else I need that I'm not getting?  Those kinds of things.  She made me pee in a jar to prove that I'm taking my pain meds and not selling them.  Given that I have scripts for pain meds, medical MJ, and a benzodiazepine, I will easily "fail" this test.  Which, in this case, means I pass.

One of the topics that came up today was the concept of patient vs. caregiver.  With 3 distinct cancer diagnoses between us in the past 3.5 years, we've each gotten to play patient and play caregiver.  Being the patient sucks.  I won't lie about that.  But, to be honest, being the loved one of a person with cancer is even tougher, IMO.  It's really a tough place to be.  You need to take care of yourself.  Get to the gym.  Eat well.  Sleep enough.  Etc.  But, at the same time, your real priorities are with the person who is sick.  And, you can't control it.  You can't change it.  You can't fix it for the patient.

You can be there.  You can support them.  You can love them.  But, you can only do so much, and after that, you feel powerless.  There are forces in charge that you can't control, you have a problem you never wanted, and in a worst case scenario, you are looking at losing your lifelong partner. I don't know how my wife does what she does.  Yet, she never complains. She puts my needs first.  She is a mom to our kids.  A wife.  Maid.  Etc.  It's a role she does pretty well.

I'm pretty much a mess as the patient.  I'm not sure how I'd do as the caregiver in this particular scenario.  I'm just glad that I married so well.

So, we might get a brief weekend as a family in the big city courtesy of my wife's co-workers and the owners of her company.

My biggest goal right now is to live long enough to pay back all the kindness that we've received in the past few years.

And, maybe find some time to catch a few more trout along the way.

Friday, May 5, 2017

Communication Breakdown

Trying to coordinate care between two hospitals has been very challenging for the past 18 months.  Most of the early coordination was done by a local medical oncologist, who had extensive sarcoma expertise.  That doctor has since moved to a different teaching hospital.

But, she promised me that she was leaving me in good hands with a new provider who would be up to speed quickly on my case, and on liposarcoma.  Oddly enough, I still haven't seen him.

Instead, I was shunted off to a different medical oncologist.  She is the person who detected the misread in my CT scans recently, but she's not a sarcoma expert.  She is part time.  And, she's retiring.

I had a treatment this morning - hydration, anti-nausea meds, and TPA to "unblock" my chemo port, which had developed a blood clot.  I was able to talk to my triage nurse, but she told me the doctor was essentially unavailable today and all of next week.

So, I have no idea how things are going with Sloan Kettering.

The current doc helped to create a problem with my pain medications, and I need to get that resolved with a PA who is a back-up to my PCP next week.  I'm not confident that that visit will go well.  "Hi, you don't know me at all, but I had an opiate contract with one of your co-workers.  My pain med needs increased, another doctor helped me to violate my old contract, and now I need a new contract with more pain medicine every month.".  That has "pill seeker" written all over it, but hopefully my diagnosis will outweigh that concern.

So now, I will probably be pushed to the doc I was supposed to be pushed to a couple months ago.  I'm fine with that, but it means starting all over again in some respects.

This means re-establishing communication between that doc and Sloan Kettering.

No one knows if I need my 7th round of chemo a week from Monday.  I might not find out until that day.

I have no idea when I'll meet the new doc.

I'm at a crucial time in my care, with some big decisions coming up.  And, communications are failing badly.

The only way to fix this is to do it myself, I'm afraid.  I need to contact Sloan Kettering.  I need to stay on top of every doctor, every nurse, every caregiver.

For now, at least, I'm not involved in ongoing fights with my insurer.  I'm good on insurance coverage, for this year at least.

But, after yesterday, I'm envisioning a future where I have to fight everyone for the care I need.


And, if you happen to be one of those people who like what the House did yesterday, do me a favor.  Leave me a comment.  Explain why my condition, which has zero known lifestyle causes, should just cause me to be abandoned by the healthcare system.  Explain to me why I'm just unlucky and I get to die.  I must be a bad person, according to a congressman from Alabama (a state where as many as 30% of the citizens have pre-existing conditions).  I'm lucky in that I probably won't have to move from the liberal state where I live.  I pay high taxes here and I'm sure VT will continue to incent their insurers to provide decent coverage for my condition, but also at an exorbitant cost.  My current ACA policy costs me $22K per year, but it's saving my life right now.  But, it only takes one small change and it would be fatal for me.  If I lost the ability to seek treatment at a sarcoma specialty center in NY or MA, there are no sarcoma specialists in my local area.  Being limited to local docs, being denied coverage for a pre-existing condition, or having my rates doubled, tripled, or worse (I've seen estimates that some patients with metastatic cancers can expect to pay $140K annually in premiums and out of pocket expenses with the high risk pool scenario) would be a truly fatal blow to me.  For the record, my cancer is not yet metastatic.  I've had only local recurrences, but I've had multiple recurrences, and eventually, metastasis to my lungs is very likely.

I've spent my adult as a taxpayer paying my fair share.  I don't complain.  I would rather have one person cheat the system, or even have 20 cheat the system, rather than deny a needed benefit to one person who really needs it.  I think most of the civilized world thinks that way.  I pay my taxes with that kind of attitude.

If you disagree, I'd love to hear about it.