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.