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.

















$85K

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.

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.