Friday, March 1, 2019

Never a dull moment (Very Long)

The truth is that I'd prefer some dull moments right now.  My proton beam therapy started out pretty mundane and then things took a turn after the treatment was over.  My wife was honestly in fear for my life in the week after the proton beam therapy, and in retrospect, I can see why.

Let's pick things up at day 4 of the radiation.  The first three days had been fairly uneventful, and while I was tired, there wasn't much else going on.  On the fourth day, I found myself very confused while trying to work.  I made a couple obvious mistakes at work, and my co-workers were fairly upset with me.  I ended up working shorter days on day 4 and day 5, and tried to get some extra rest.

I finished the radiation on Friday night after five treatments.  Originally, I was scheduled for 6 days, and I would have needed to stay in New Jersey until Tuesday morning.  By finishing on Friday, I had the option to head straight home, but instead, I'd arranged to have my dad visit me in NJ for the weekend.  Regretfully, I was too tired to do much socializing.  I made it to dinner on both Saturday and Sunday, but otherwise, I mostly rested.

There is one thing I should mention here as it will become important later.  On Friday, my blood pressure was very low at the infusion center.  It was mostly in the 90/45 range.  My BP is normally somewhat low, at 110/65, but 90/45 was way too low.  The people at the infusion center felt that I was dehydrated but they don't offer IV hydration.  The nearest hospital was 25 miles away, and there is no way to guarantee that I would get IV hydration if I showed up at their ED.  Plus, I had no way of knowing if my insurance would cover the facility.  A hydration visit to the ED, especially out of network, would have cost more than $1000.

On Monday morning, I slept through breakfast with my dad.  I felt terrible doing this, but I just had no energy.  We said our goodbyes and my wife and I headed home.  At this point in time, I barely remember the next 24 hours, and I'm simply piecing it together from what I can remember.  I felt really tired and confused.  We had a 6 hour drive to get home and it was close to noon by the time my wife could get me put together and onto the road.  I was also confused about my medications, and I think it's possible that I over-medicated myself.

As we progressed on our trip, I became more and more confused.  I tried to play around on my iPad, but I was essentially incoherent.  Here is a draft e-mail that I found in my draft outbox a few days later:

"No worries. Jo, Thihds cange fok t getter fo ao userful stit eijah oiflle gr;  Air fare fo bkig poing but watmd ti dicxv0ver ehir ehf of townl thenm  by tradatio, i a hane gym without a towol awoujd it  wot ;eae  

Our wakeup would kill mostg people"

I was replying to a friend named Joe and I think I was talking about CrossFit.  Luckily, I never hit send.

I remember stopping for a bathroom break in NY and getting a diet Coke.  My wife was unhappy with me at the rest area, but I couldn't understand why.  I'm sure I was incoherent.  In 90 minutes or so, we made another rest area stop.  This time, I was belligerent.  I wanted to know why we were going in circles.  In my mind, this was our second time at this rest area and my wife was doing loops to get home.  I was mad that it was going to take so long to get home, given that I just wanted to go to bed.

At various points, I turned to my children in the back seat of the car to ask them to corroborate my opinion that we were going in loops.  I was unhappy when my kids wouldn't back me up.  Of course, my kids weren't in the car and I was talking to no one.  At this point, my wife was scared that I was going to end up harming myself or us somehow.  In retrospect, I can see why, but at the time, I simply got angry with her.  One piece of advice I can offer to any cancer patient is to never piss off your caregiver.  You need that person on your team.

FInally, after about 7 hours, we made it home.  My wife and I continued to argue, this time about my medications, and she was finally able to get me to bed.  I was planning to take the next day as a sick day, so I slept in when my wife left the next morning.  My wife called to check in on me around noon, and I was still fairly incoherent.  My wife insisted that I call the oncology clinic and I reluctantly agreed.  It turned out that I could barely operate the phone and it took half a dozen attempts before I got through.  The clinic wanted me to increase my fluid intake and call them back the next morning.  I think I simply went back to sleep.

The next day was Wednesday.  I had planned to work this day, but I was too sick to go to work.  I slept in a bit and then called the clinic.  They decided that I needed some IV fluids, but they had no room for me.  They finally arranged for me to be seen at another local hospital in their infusion clinic.  I had my son drive me to the hospital and I got checked in to the infusion clinic and they started an IV.  My BP was still ominously low.

I made it through the first bag of fluid and they started a second.  After the second bag, they transferred me to a room with a bed.  I'm still not sure if I was in the day clinic or I was in the emergency room.  They decided to do a CT scan to look at my lungs.  This was a follow-up due to the pneumonia and blood clot I'd had in January.  They wanted to make sure that there were no new symptoms from that.

Luckily, the lungs were clear, the previous clot is almost gone, and there were no problems there.  But, in doing the CT scan, I'd had an allergic reaction of some sort when they accessed my chemo port.  (A chemo port is a piece of hardware installed under your skin in the chest area that allows doctors to easily give IV fluids or draw blood).  By this point in time my wife had arrived.  I suddenly felt an odd feeling in my neck area, and I reached down to feel that my neck had swollen to a huge size.  My wife and the doc noticed it at exactly the same time.  They immediately de-accessed the port and started to monitor me for anaphylaxis.  Luckily, as soon as the port was de-accessed, the swelling began to reverse.  The docs still have no idea what happened to cause this problem.

It was now dinnertime, and it was decision time.  The docs were unnerved by the reaction that I'd had and I wasn't really their patient.  They decided that it was best to transport me to the teaching hospital where I get the majority of my care.  So, I was loaded up into an ambulance and away we went.  It was now late and my wife opted to go home and get some sleep.  I encouraged her to do this because she didn't need to do the extra drive that night.  Remember that she'd been dealing with me for days now.  She needed some rest.

When we got to the new hospital, I went straight to the ED.  In about an hour or so, due to the reaction I'd had and the still ominously low BP, they decided to admit me to the ICU.  I'd had 4 full bags of fluid by now and I still wasn't urinating.  We were also struggling to keep my pain under control at this point in time.  So,it was off to the ICU, a place that I didn't want to be.
I must say one thing about the ICU though.  You have the thorough attention of the doctors on staff.  I saw an endless parade of doctors.  Some were following up on the cancer.  Some were following up on the adverse reaction.  And most were concerned with my blood pressure.

From here, things gradually began to improve.  The swelling in my neck resolved over about 12 hours.  I was eventually dropped to a token IV drip, with the assumption that I'd had enough fluids.  My chemo port was removed, as they now considered that it had been compromised somehow.  I was given some new medicines to push up my blood pressure.  The diagnosis was adrenal insufficiency.  In reality, they still don't know what caused the problem, and my BP is still low - about 100/50.  
But, things resolved gradually over 3 days and I was sent home on Saturday.  My instructions were to eat and drink and take a bunch of new pills.  I was discharged directly from the ICU to the street - something that doesn't happen very often.  I have to question whether or not I belonged in the ICU or not.  It's possible that the ICU was an overreaction, but I'm glad for the high quality of care that I received.

My wife and I have had a few disagreements since my hospitalization regarding my medications.  I finally decided that it was best to just let her take care of things.  I'm not fully lucid all the time and she is more on top of things than I am.  I'm not going to argue with my caregiver when she is clearly more on top of things than I am.

We are talking more and more about me going on disability.  I think I'm still doing OK at work, but I'm probably not at 100%, no matter how I feel.  The biggest issue regarding disability is paying our bills.  We would likely end up in bankruptcy court if I went onto disability, and I don't want to impose that burden on my wife.

It's clear that the cancer has the upper hand right now.  The insurance system alone shows that the cancer is winning.  I haven't seen the bills yet for the proton beam therapy, but with two other hospitalizations, my medical costs for the year to date are currently at $85K.
Hopefully, in the next few weeks, we will discover that the proton beam therapy worked and I will start to feel better.  I go back to Sloan Kettering in early April for my next check-up.  It would be nice to stay out of the hospital between now and then.

Sorry for the long post, if anyone made it this far.  I write this blog primarily for some friends that want to stay updated.  I also write it in the hope that it will help another liposarcoma patient at some point in time (it's already helped at least one).  Sometimes that means writing a wall of text.

TL;DR - Had bad side effects from proton beam radiation.  Ended up in the hospital but everything seems better now.  Waiting to see how effective the radiation was.


Tuesday, January 29, 2019

Prepping for Proton Beam Radiation

I spent last Friday at a medical facility in New Jersey known as ProCure.  ProCure's sole line of business is proton beam radiation.  I'm not going to go into the technical details between standard photon beam radiation and proton beam radiation.  Let's just suffice to say that proton beam radiation is allegedly much more precise than photon beam radiation.  It is offered at fewer locations and it comes with a hefty price tag.  My insurance company fought the approval of this treatment, but they finally relented late last year, and I'm scheduled to have the treatments in February.

I am scheduled to have six sessions of proton beam therapy, starting on 2/11 and finishing on 2/18.  Because I'm having a limited number of doses, they will be high strength doses.  Proton beam therapy allegedly has fewer side effects than photon beam therapy, but I've been warned that my nausea will be worse for the duration of these treatments.  The doctor really wants me to focus on keeping my calorie intake up, so that I don't lose any more weight.

I have been able to eat more in the past 10 days or so, and that is encouraging.  I don't always pick healthy foods, but the doctors are insistent that any calories that I can get in are good.  I'm just supposed to eat.  Yesterday was probably my best day in quite a while.  I ate a ham and cheese sandwich for lunch, plus an egg and cheese burrito and some fruit for dinner.

My weight last Friday at ProCure was 164 pounds.  In August, I was at about 205 pounds.  So, I've lost 40 pounds in about 5 months - way too much.  The doctors have made a number of changes to my medicines to stimulate my appetite.  I'm taking a small dose of dexamethasone every day.  I'm taking an anti-depressant at night that has a sedating effect, which helps with nausea and hunger.  I'm supposed to be increasing my dose of medical marijuana, but I honestly don't feel like doing that one.  I already feel somewhat fuzzy from the pain medicines that I'm on, and I don't want to add the buzz from the weed as well.  But, I'm doing it when I can.

I'm not sure what will be next after the radiation.  The radiation is targeting two of the three tumors that I currently have.  The third tumor is in a "safe" space and does not appear to be growing.  The other two are in what the radiation oncologist described as a "deadly" zone, and we need to go after them.

I'm guessing that we will follow the radiation with some more chemo - probably a drug named Yondelis.  As an aside, the chemo drug that failed for me earlier this year - Lartruvo - has suddenly become the subject of a "cease and desist" order.  As people collated phase 3 trial results, it became obvious that there was no long term benefit from the drug.  What most people saw was a temporary shrinkage upon starting the drug and then a rapid return to baseline after 4-6 months.  So, that treatment time and cost seem to have been even more of a bust than I'd suspected.

So, in 12 days, my wife and I head south to New Jersey for a lovely winter vacation of ten days.  The facility is in a business park setting in the heart of big pharma country.  Let's just say there's not a lot to do.  I'll probably be feeling sick enough that it won't bother me, but I feel bad for my wife, who will use her precious vacation time to just hang out in NJ for 10 days.  I will work at least part time while I'm there, but it's easier for me to telecommute than it is for her.

After the treatments are over, I will need a few weeks to recover and regain my strength.  I am scheduled for a CT scan at Sloan Kettering in April, which will tell us how effective the radiation was.

I am still getting blood transfusions on a somewhat regular basis.  I'm not sure why my hemoglobin levels are so low, but I got two units of blood this past Sunday.  I'll probably need some more blood around the time that I do the radiation.

So, we know what we are doing next and it's time to execute it.  I'm hopeful that the doctors have accurate information for how to aim the proton beam, and that they hit the tumors precisely.  The better they hit the tumors, the lower my side effects will be, as the tumors aren't performing any necessary body functions.  If it's the tumors that we kill, I should feel better than if the radiation hits the surrounding healthy tissue.

The radiation oncologist joked last Friday that radiation can always eradicate a tumor.  But, the important thing is to eradicate the tumor without damaging the healthy tissue surrounding the tumor.  It does no good to kill the tumor if the treatment also kills the host.

Thursday, January 10, 2019

Another "pain event"

About 2 weeks ago, some pain in my abdomen started to get worse.  But, it was manageable with my pain meds, so I went about my normal business.

On New Year's Eve, about the 4th day of additional pain, I took an overall turn for the worse.  I had a fever (103F-105F) and the pain was getting worse.  I paged the on call oncology doc, and she literally told me to take two Tylenols and call her in the morning.  When I checked in the next morning, the doctor decided that I should go to the emergency room that was closest to me.

I'm not crazy about the closest ER, so I chose to go to the University of Vermont Medical Center instead.  That is where I get my local oncological care.

It took forever to get through triage, but once I got through, things kicked into high gear.  I got some morphine for the pain, and for the first time in almost a week, I was not in serious pain.  Then, the tests started.  Multiple CT scans (I don't even want to know my lifetime radiation exposure due to CT scans), a heart ultrasound, leg and arm ultrasounds, chest X-ray, etc.

The early scans showed that I had pneumonia in my right lung.  This was odd as I had no symptoms of pneumonia.  The CT scan of my lungs showed that I only had one tumor, and not multiples, as they had feared.  I was put on Lovenox to help prevent new clots from forming.  I will be self-injecting that drug for about 2 more weeks.

Next, we turned to pain management.  When I first arrived, it took 4.5mg of morphine to bring the pain under control.  The second dose was 6mg and I was still in pain.

The docs really drew a blank on the source of the pain.  They said it might be from the pneumonia or it might be from the cancer and a tumor growing.  There was nothing definitive.

Once again, as had happened in my last post, I was admitted and they sent out the pain specialists to work with me.  They decided to give me a bigger dose of oxycontin, and then morphine for breakthrough pain.  The morphine was administered by me using a pump, also known as Patient Controlled Anesthesia.  This combo worked well during the day, but it was a flop at night.  At night, I would doze off until the pain got worse and woke me up.  At first, I was waking up every 2 hours and I was allowed to hit the button every 30 minutes.  But, as time passed by, the time between hitting the pump steadily decreased.  Eventually, I was awake full time because the pain wasn't being controlled well enough.  I really needed to be on pills that would last longer or I needed to have the docs deliver the pain medicine on a fixed schedule through the PCA device.  But, that wasn't the purpose of the PCA.

So, we switched back to all oral meds, with some occasional morphine for breakthrough pain.  This allowed me to sleep in blocks of 2-3 hours at night and I felt much better.

By now, it was Friday morning.  I'd had my fever on Tuesday, and I went to the hospital on Wednesday.  We knew I had pneumonia and I was on meds for that.  We knew about he blood clot,  But, we still didn't know that cause of the pain.  Was it from the cancer or from the blood clot?  The docs were talking about sending me home on Friday, but I really resisted.  I felt that we didn't know enough yet, and going home would mean that we were just guessing as to what was wrong.  In the end, the docs agreed with me, and I was cleared to stay overnight on Friday night.

On Friday afternoon, I had an odd exchange with two doctors that I had never met before.  They were medical oncologists, but they had never treated me before.  They told me that the proton beam radiation with Sloan Kettering would not be happening, but they gave me no reason for this.  I tried to have a discussion with them about it, but they insisted that they were going to call Sloan Kettering, talk to my radiation oncologist, and get my radiation cancelled.  When I pressed them in their role in my care, they said that they were the attending oncologists and that this was their domain.  They didn't defer to my normal oncologist in any way.

I still don't have anything definitive, but I know that one of the docs did call Sloan Kettering to talk to my radiation oncologist there.  They left me a phone message without the name or number of the doctor, and asked me to call back.  I can't call back when I don' t know who it was that called me to begin with.  So, yesterday, I reached out to my local medical oncologist to see if she knew who these doctors are.  No answer so far, but I"m proceeding as if the radiation is going to take place.

On Saturday, after a 3 night stay, I agreed to go home.  I'm still fighting nausea and a lack of appetite, and the pain is still there, but it's more under control right now.

So, once again I'm dealing with an increase in pain medication.  My PCP no longer wants to supply my prescriptions as she feels my dose is too high for her to control.  I see my medical oncologist next week, and I'm going to ask her to take over management of my pain medications.

I'm still in the dark as to the cause of the pain.  I"m guessing that it's a tumor pressing on a nerve, but it could be the blood clot in the lung.  Blood clots in the lung can cause significant pain.

I go to NJ on 1/25 to meet with the docs at ProCure, the proton beam radiation center.  My radiation oncologist from Sloan Kettering will be there that day, to work with them on setting up the beam exactly the way he wants it to be delivered.

And, I have to hope that my pain dissipates or at least remains manageable.  I'm on the edge right now.

Thursday, December 27, 2018

Pain Management and the Opioid Crisis

It seems like you can't help but trip over articles about the opioid crisis on the internet these days.  Go to any major news site and they'll have one or more articles about the issue on their main page.  Sometimes, the articles are puff pieces, with national statistics showing that things are still getting worse, and sometimes the pieces will be in depth articles about how the opioid crisis is hitting a small town or a big city near you.

I'm torn on the issue and what should be done about it.  Part of my ambivalence is that I'm personally on a high dose of opioids, and I hate how the system for controlling them seems to err on the side of denying the medications to patients.  For example, if I was going out of town and my prescription was due to be refilled on my second day out of town, I can't get it refilled early to accommodate my travel plans.  There aren't any exceptions to this rule, unless your provider explicitly states on your prescription that it can be filled on the early date.  And, prescribers are reluctant to provide early refills because it could be a request based on addiction.

Also, Vermont's most recent attempt to legally help out in this battle has imposed things that I think are burdensome to the patient.  The first part of the law requires that I see my prescriber every 90 days.  My doc would typically want to see me every six months, but the law now requires an appointment every 90 days.  Secondly, if I have a prescription for a benzodiazepine (anti-anxiety drug) and an opiate, I am required to have a prescription for NarCan, the drug that can be used to counteract an overdose.  It's unlikely that I'd ever overdose on this combo of drugs, but I am required to have the NarCan.  I had already met my out of pocket max when I got the prescription, but it cost my insurance company money to cover that prescription for me and every patient who has both prescriptions.

Lastly, VT has an interesting tiered way of measuring how much medication opiate users are getting.  Basically, they have a way to convert the dosage of any opiate to a morphine equivalent.  There are tiers that define who can get a 7 day supply vs. a 30 day supply, and there are differences for patients who are considered opiate naive vs. patients who are regular users.

I am not considered opiate naive, and I've been on painkillers for about 30 straight months right now.  When I started, I was taking 15 mg of oxycodone per day.  That works out to a morphine equivalency of 22.5 mg per day.  The threshold for a high dose user is 90 mg per day.  Over time, I have progressed from 15 mg per day to 30 mg and then to 60 mg.  When my dosage reached 60 mg, which is a morphine equivalent of 90 mg per day, I was officially classified as a high dose patient.  Getting to that level didn't really change anything in how the law affects me, but it honestly didn't feel like I was on that high of a dose to be put in that high risk category.

In September, things took a turn for the worse for me.  My pain levels escalated quickly in a period of week and the 60 mg of oxycodone was suddenly not enough.  In retrospect, this was after a chemo had failed and I went through a period of time where I wasn't being treated at all.  I believe I wrote about the terrible week that I endured, but here's a quick synopsis of how we got my pain back under control.

I woke up on a Monday morning in tremendous pain.  I had been taking the oxycodone through the night, and I'd already met my dosage for the day by the time I got out of bed.  I told my wife that I was going to call in sick and I'd consider trying to get an appointment to see my doctor.  By mid-afternoon, I was feeling worse, so I went to the ED of a local hospital  I'd had enough oxycodone that I had my son drive me to the hospital.  They monitored me for a few hours, did an extensive check of my medical record to see my usage patterns, and after a few hours of doing nothing, they gave me a new prescription.  It was for dilaudid, which they described as about 10% more potent than oxycodone in the dose that they gave to me.  The prescription was only for a week's worth of medicine, and I was advised to follow up with my PCP.

The next day, I called in sick again.  The new medicine hadn't made much of a dent in my pain levels.  I contacted my primary care provider through the hospital's patient portal, and she luckily saw my message on a day that she wasn't working.  She gave me her cell phone number and asked me to text her.  She was in agreement that the dosage change was likely insufficient and she wanted me to be seen at a teaching hospital - either Dartmouth or the University of Vermont Medical Center.  So, the next day, I called in sick again, and I had my wife drop me off at the ED at UVMMC.  It was a slow day in the ED and I got some prompt attention.  Their first goal was to get my pain under control.  It took two doses of morphine to achieve that goal, but we got there.  They ordered some imaging to see if my tumors had grown, to explain the new pain.  The imaging showed that they had grown since August, but it was tough to measure how much.  They were comparing a CT scan to an ultrasound, and comparisons between the two are not that easy to make, at least for the tumors I had.

By early afternoon, my morphine had worn off and this time, it took 3 doses to get it back under control.  This concerned the doctor.  Finally, he offered me two options.  He could either take a guess as to what would work and send me home with a new prescription, or they could admit me and do a full pain evaluation with pain specialists from the oncology center.  This was when the magnitude of the problem really hit home.  He was telling me that things had progressed with the disease and that it made sense to do a more thorough pain evaluation.  The way he presented it to me, it was clear that he expected that I would just take the prescription rather than being admitted.  But, I wanted the issue to be resolved, and I chose to be admitted.  By late afternoon, I was doing interviews with pain specialists.  This included doing an Advance Directive, in which the doctor advised that she thought that I should decline CPR if things progressed to that level.  This scared me again.  Was I really this sick?

By about 6:00, I was transferred to an open bed on the cancer ward.  The doctors had conferred and they started a new dose of pain medications right away.  This time, I was going to add Oxycontin - the drug frequently referred to as "hillbilly heroin" to my pain management.  The doses that they tired were 40 mg of Oxycontin every 12 hours along with my old dose of oxycodone - 10 mg every 4 hours for breakthrough pain.  That night, I slept through the night for the first time in over a week.  Even though the nurses were busy taking vital signs, I was able to sleep.

By early afternoon the next day, the doctors were comfortable that they had gotten the doses of the medicines correct and they suggested that I go home with the new prescriptions.

My new dose of oxycontin plus oxycodone was a total of 140 mg per day, or a morphine equivalent of 210 mg - more than twice the high dosage threshold.  Three months later, I'm still on this same dose of medicine and it seems to be working.  I am no longer driving.  I gave up alcohol.  I am fighting persistent nausea, which might be caused by the pain medication, but I need the pain medication.  The alternative would be to try Fentanyl patches.  If you've read any of the articles about the opioid crisis, which is how I started this conversation, Fentanyl is today's bogeyman.  The problem is that Fentanyl is exceptionally strong - way stronger than morphine or dilaudid or oxycodone, and it's ending up in street drugs.

So, I'm now on a very high dose of medication.  My primary care doc is on board with this and she writes my prescriptions every month.  Things are working.

At the same time, I'm a high dose user.  But, I have cancer and the system isn't preventing me from getting the medication that I need.

I was lucky that I got the appropriate level of care.  How many others are given these drugs by doctors who mean well, but end up with the patient being hooked on the medications?  How many people started out with a strain to their back and six months later they were hooked on high dose painkillers?  And, how do we help those people once they've become addicted?

At a time where there is a big push to contain the costs of healthcare, not everyone can afford to go to a rehab clinic.  There aren't enough rehab beds for everyone who needs treatment.  How many people end up homeless and injecting street drugs because their well-intentioned doctor gave them too much pain medicine?  CNN has an interesting article about a neighborhood in San Francisco that is worth a read.

I do believe that we need to treat rather than punish the people who end up addicted.  My docs don't care if I become addicted.  I will be on pain medications for the rest of my life.  As long as I am safe (being smart by not driving, for example), it makes sense for me to be on these medications.

I feel a tremendous amount of sympathy for those who are addicted.  It could have happened to me under the right circumstances.  I want to see this problem fixed, but does the US have the will and the money to do it?  How much would it cost us in insurance premiums to be able to offer quality rehab programs to everyone who needs one?  What about people who are treatment resistant - people who need multiple trips to rehab and they still aren't clean.  I have friends who have lost loved ones to this epidemic.  None of them want to see punishment as the solution.

But, until we find the will to pay for treatment for everyone, I doubt that this problem can be solved.  How much will the US tolerate before someone screams "Enough!"

Wednesday, December 12, 2018

Little things going my way - an optimistic update

Lately, I've had some little things that are going my way, and as I stare at the big picture of the cancer and my treatments, I wanted to take a moment to acknowledge the good things that have been going my way.

When I started my last chemo and changed my pain medications around, I got connected to Matthew, a social worker at the local teaching hospital.  He was assigned to me as my social worker, and immediately got to work seeing how he could help me.  We agreed that I had a good support system at home and that I'm still able to take care of myself, but when I told him how my company had treated me, by reducing my role and my income so dramatically, he said he thought he could help us out financially, even though we still make well above the median household income in VT.

The first thing he did was get us a $300 stipend from the hospital to help cover some unexpected prescription drug costs.  That offset some costs we encountered when my pain medicine regime was changed so dramatically in September.

In addition, he applied to a local charity on our behalf - a charity that helps people to make ends meet by helping with a household bill - rent, fuel bill, car payment, etc.  It took some paperwork, but that charity ended up paying our car payments for a month.

Another little perk was a free gas card to help offset our commuting costs.  It was just one tank of gas, but every little bit helps.

In addition to working with charities, another social worker was assigned to work with my insurance company because my insurance company declined to pay for one of my pain medications.  I paid $550 out of pocket because I was afraid I'd end up being readmitted to the hospital without the medication.  The odd thing is that it turned out I was covered for this medication, as long as I used the brand name medication and I had a prior authorization.  But, that first time, they sent me home with the generic medication and my insurance declined to pay for it.  But, after a lengthy appeals process handled by the social worker, my insurance company relented and they have now refunded me the entire amount of the prescription.

So, lots of little financial things have been going my way.  Yesterday was even better though.  My assigned social worker sent me an email, asking if I was interested in a free week in a high end rental home in Stowe, VT.  Apparently, the week had been donated to a cancer fund raiser, and the person that won the auction donated it back to the charity, to be used by a cancer patient.  My social worker suggested that I would be the ideal recipient for the week in the house.  So, we are now trying to find a time that the property is empty.  It looks like it will be in April, which could mean some late season skiing at Stowe.

If you add this in to the two fundraisers that my gym has done for my wife and me, I feel like we have someone looking out for us.  In reality, it's just friends and, in some cases, charities that are funded through the kindness of others, but it's nice to know that these resources are out there.  I know that there will still be tougher days ahead, but for now, I am feeling blessed, a word that I rarely use any more.

One quick cancer note: I had a CT scan done yesterday here in VT.  It will be sent to Sloan Kettering and the doctors there will make the final determination on my next treatment.  It is likely to be proton beam therapy at ProCure in NJ.  My insurance has approved this treatment, and it has the potential to reverse some of the symptoms that have gotten worse in the past few months.  The other alternatives are chemo, which I've been doing, or surgery, which my surgeon seems reluctant to do right now.  So, now I wait to hear from the docs at Sloan Kettering before I book my next treatment.

Friday, December 7, 2018

The plan going forward

I spent Tuesday at Sloan Kettering.  I started the day with a CT scan, but it was barely a scan.  Just my lungs and done with no contrast.  As it turned out, they should have done the full scan.

Next, I visited the radiation oncologist.  His office was unhappy that there had been the mix-up with communications and that I hadn't gotten the go-ahead to do the radiation therapy despite the tumor growth.  The doctor's comments regarding the communication were "It's not that hard".  He said that it's imperative to get the radiation started as soon as possible, while there is still a window to do it.

From there, I had my vitals done and then we waited.  And waited.  We finally got in to see the medical oncologist.  He was still fine with radiation as well, but he was also glad that we had started the chemo when the radiation got delayed.  He wants me to stop the chemo during radiation, because the chemo hasn't been studied in conjunction with radiation.  That reminds me that I need to cancel my next chemo appointment.

The surgical oncologist, who really coordinates my care, was last.  And, we were running out of time to make our train home.  He said that he was fine with doing the proton beam therapy radiation, but he wanted to see a CT scan first.  So, I've got that scan scheduled for next Tuesday morning.  So, we seemingly went 3 for 3, with everyone in favor of still doing the proton beam therapy.

I got home late on Tuesday night and Wednesday morning included a big presentation at work.  I'm happy to say that the presentation went well, at least in my opinion.

From there, I headed to the hospital for blood work and chemo.  I had my port accessed and blood drawn first.  From there, it was a 45 minute wait for a chair in the infusion bay.  The first thing the nurse said to me when I got to the infusion bay was "Do you know what your hemoglobin is?"  I told her no, but I assumed from her question that it was low.  It had been 9.9 only 9 days ago and it was down to 7.6 this week.  They immediately began scheduling me for a blood transfusion.

The chemo went pretty well and I was back at work pretty fast.  Yesterday, I spent another five hours at the hospital, getting two units of blood.  I was hoping that the blood would make me feel better, but it hasn't.  I'm guessing that it's the side effects of the chemo that are still keeping me feeling so tired.

I still have no appetite.  I told my wife earlier today that I feel like I've spent my entire life looking forward to my next meal.  Right now, I feel that if I just decided to stop eating, my body wouldn't care at all.  My body would happily let me starve to death.  It's no fun trying to force yourself to eat every meal, but that's where I am.  Nothing tastes good, and I just have no appetite.  It's honestly scary, because it feels like my body is quitting on me.  Having an appetite is essential to survival, and I don't have one.

So now, some more waiting.  The CT scan is Tuesday morning.  Then, it will take a week to get it sent to Sloan Kettering.  This time, I expect a rapid turnaround on the read, and permission to get to radiation treatments.  Then, I have to start scheduling appointments at ProCure in NJ, the site for my radiation therapy.

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.