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.

Tuesday, May 2, 2017

And, we move on

From Wednesday night through Sunday around lunchtime, I slept 52 hours, according to my FitBit.  Two nights registered at 15 hours.  I even napped during the days.  I was too tired to even work on Friday morning.  The cumulative effect from this chemo is pretty intense.

But, after some intense rest, some time to calm down, and just feeling a bit better, I'm back on the treatment train.  I mentioned to my nurse at chemo yesterday that I was at a point last week where I'd just had enough.  I just felt I couldn't continue with any of this.  She thought about things for a while, and asked if I knew about the counseling services offered by the oncology center.  I am a patient there as well, so I was well aware, but thanked the nurse profusely.  She had thought about an offhand comment that I'd made and tried to create something good out of the situation.  I am grateful for the caring health care personnel that I encounter on a regular basis.

I have also recently run afoul of the "pain medicine police", it appears.  My primary care provider works for a small, local hospital.  Throughout this ordeal, she has mostly done triage type work for me, helping me to see the appropriate providers, managing medications, and worrying about some day to day issues so I can focus on the cancer issues.  This has included pain medication management.

I'm sure there isn't a person in the US who hasn't heard about opiate addiction.  In the cancer world, things tend to be a little bit different.  Control is perhaps a bit less lax than for the general public, especially the backache and toothache pill seekers.  Cancer patients seem to get asked fewer questions when they are in pain and tend to have access to the pain meds they need.  I don't take a lot of pain medication, but I've now had 3 cancer surgeries, a course of radiation, two courses of chemo, and I have some active tumors in my abdomen.  Pain is part of my life.  Medical marijuana helps with the pain, but it's something I can only use at night.  During the day, and after hard workouts, I need some access to pain medications.

So, for a year, my primary care provider has been providing those prescriptions.  But, my PCP is currently on maternity leave.  And recently, I had a change in my pain status that resulted in some more pain.  I mentioned this to my oncologist, and she immediately gave me another prescription.  I mentioned to her that this would violate my opiate contract (yes, I have an opiate contract with my primary provider) because I'm not allowed to get pain medicine from anyone but my primary care provider under the existing contract.  The oncologist asked if there was another way to do it.  I explained that with my PCP on maternity leave, I would have to make an appointment with a provider I didn't know and ask for an increased dose of pain medication, which could easily be denied.  My oncologist answered like this: "I don't require opiate contracts.  I don't count pills.  I want my patients to be safe but I also need them to be comfortable to focus their strength on their treatments."  She offered to take on all of my pain medication management, if I wanted.

But, I decided I'd wait.  I sent an e-mail to my PCP explaining the situation.  And, last Friday, I called the prescription line for my PCP and asked for a refill.  I was open about the other medication that I'd gotten in that request as well.

Apparently, my message triggered a query to the state and they found my other prescription.  No big surprise, given that I'd told them about it.  But, they then called me and told me they couldn't fill my prescription because I'd violated my opiate contract.  The nurse agreed that I'd done everything appropriately, but policies are policies.  I am allowed to visit another provider, sign a new contract and get more medication, if the provider is open to my request.  I told them that I would think about it, but my plan is to simply move pain management to the oncologist.  I think I'm pretty responsible about how I use the medications and I don't like being treated almost like a criminal for having cancer and pain that goes with it.

So, despite a low point last week, things are a bit better right now.  I'm done with my 6th round of chemo.  If I'm lucky, it will be my last, or we could do 1-2 more.  If the final response at the end of chemo is good enough, we will move to surgery.  If not good enough, we may try another medication first, although I'm certainly hoping that won't happen.

And, I'm not ready to give up trying against this beast.  At times, I feel pretty beaten up by the treatments.  And the disease.  I may not win this war, but I also won't be defeated.  I'm going to live life on my own terms for as long as I can.  Besides, there are still lots of CrossFit workouts to be done, and trout to be caught.