“Well, your disease is stable. In a couple of places, we could say there’s a small amount of shrinkage.”
Everyone stares at everyone until I say, “Well, that complicates things doesn’t it?”
I’d added on one more month of the CRLX101 trial, just to keep that option open after my last CT scan showed growth, and I continued to get more symptomatic from tumors around my heart and lungs. I think my NIH team and I fully expected there’d be more growth this time, meaning I’d leave the trial and go into Prot0n Therapy. Now, we had to decide whether to take a radiation sabbatical from the trial, but stay in it until my FOUR WEEKS of therapy end OR call this CT scan an anomaly and just move on to something else in January. The problem being that there is nothing else for me right now. So I got the CRLX infusion and am taking the orals until three days before when I’m hoping to start the Proton Therapy. I’m ready to go on Dec 3. I have my flight out to MD for a month, leaving Dec 2. I’m looking forward to relieving the constriction in my chest and getting back better breathing. But now, we are waiting for my insurance company’s expert to give approval for the procedure. Exactly one year ago, they gave approval for it, but I got into this trial instead. They said that approval expired (?), so it has to go through the process of being deemed medically necessary. Do they really think I’d disrupt my life and put myself int0 a potentially risky medial procedure if we didn’t think it was medically necessary? Who are these people? Anyway, I’m hoping they come through today or tomorrow (Commentary upon proofreading: They didn’t) as I am pretty uncomfortable almost all the time now. The coughing is bad. I keep waiting to see if I’m going to break a rib or something. That would suck more. It could be worse. And it is getting worse.
So I went to Belize.
My niece, Jen, and I, tried to schedule this trip this summer, but couldn’t pull it together. We decided to go Thanksgiving week, which turned out to be a bit of unplanned brilliance on our part. Not too crowded, but all the guide companies seem to be at full staff in anticipation of the December tourist tsunami. We started on the mainland in San Ignacio. We visited Mayan ruins at Xunantunich with a guide named Francisco. Francisco seemed to be constantly surprised that his little car didn’t break down. The ruins were incredible, possibly built in 1000 BC. We were a bit wigged out by remnants of a sort of basketball court, where players were possibly sacrificed to the Gods. Not the LOSERS, but the WINNERS. Because why would the Gods be impressed with a loser?
The next day, we went into the Actun Tunichil Muknal or ATM Cave. You cross three rivers to get to the mouth of the cave, and the first time I felt that I was in trouble. I pretty much lost my shit in the middle of the first river. I couldn’t breathe, couldn’t move forward. I had to let Hector, our guide, pull me out, hanging on to his backpack. He obviously thought I had lied about being able to swim. He said, “you were anxious. Just take big breaths, that helps.” I was thinking that I was actually drowning, and I couldn’t take a deep breath to save my life (literally). What I said was, “I’m a multiple Ironman finisher. I can swim well.” He was neither convinced nor impressed.
The cave was indescribable. You hike over boulders and through narrow cracks in the rocks through a subterranean river that ran as low as your ankles or as high as your chest. Eventually, you get to the dry chamber, where the skeletons of sacrificed people were left unburied hundreds of years ago. They were probably sacrificed to try to get the Gods to make it rain. We used https://www.mayawalk.com
Ask for Hector.
From San Ignacio, we left for San Pedro, the beach, the island, the place where our number one goal is to get sunburned (we succeeded).We stayed in the Bella Vista Guesthouses
which were terrific. Little cabins with a restaurant, a guide who can take you fishing (n0) or snorkeling (yes), a pool and two cute puppies. Jen dove the Blue Hole one day, which she loved. I did a yoga class in a studio on the end of a pier that went on for TWO HOURS AND FIFTEEN MINUTES. None of the yogis was surprised, and no one left, so I was trapped. That pretty much zapped my morning, but I did work on that sunburn all afternoon.
The next day, Anner, the guide, took us snorkeling. Again, a bit of water panic as my chest was constricted. A humiliating life jacket made the snorkeling possible. It was worth it. We swam with nurse sharks and rays, saw Eagle Rays, and countless beautiful fish. In the afternoon, we sent to Secret Beach, which should have been called Five Bars in a Row Beach. I’m glad we saw it, but it could have been skipped.
We flew home the next day. I had figured I’d have a hard couple of days in Park City, with the elevation and dryness after a week of sea level and tropical air, I just didn’t know how bad it would be. My chiropractor told me I looked gray rather than brown, and urged me to get my Blood O2 level checked (who does that?). But I was feeling so badly I did it. It was 84 (usually 98-100), so off to the ER I went. Hours of tests later, I have PNEUMONIA again. I got the vaccine this fall, but apparently, this is another strain. So I am sitting in Huntsman Cancer Center in Salt Lake until I can convince the doctor on duty to send me home.
This happened, oh about an hour after my insurance company denied coverage for the proton therapy. Their expert said standard photon therapy would suffice. I told my case manager that I could get photon radiation, the radiation would go through the tumor into my heart and kill me. Harsh, but not untrue. We are filing an urgent appeal, as I am scheduled to begin proton therapy on Monday. It’s the first time I’ve been denied coverage for what is obviously medically necessary (proton beams stop at the tumor, saving collateral damage to surrounding tissue, like THE HEART), and the first time I’ve been faced with fighting my insurance company. I declined taking an ambulance from the Instacare to the first hospital, because I am concerned it could affect their decision to cover the proton therapy. Both Park City Medical Center and Huntsman insisted on sending me by ambulance to Huntsman, so my insurance company will get that bill no matter what. I can’t believe I even have to think like that.
You know, most people have little swells of ups and downs. I seem to have rogue waves. But I’m not on the SS Minnow (f you get the reference, you’re old), and I feel I’ve proved my seaworthiness over and over (and over and over and over and over) again. I am looking forward to the massive antibiotic infusion to work (it already is), and to starting proton therapy very soon, so I can get reaquainted with what “I’m fine” means. #defy.