In other ways I've found that the experience is all too present in my mind, and in my emotions for me to truly be comfortable. There was a period 9 days or so a few weeks back that were pretty traumatic. I remember leaving the hospital on my last day of treatment the end of February ready to be done. I was ready to rid myself of doctors, of chemo, of at least some of the uncertainty. As the days drew on, I was feeling confident. Before the doctors were to officially declare me "done with treatment" they scheduled yet another PET/CT Scan (I've gotten very good at these scans, and I'm pretty sure the radiology department knows me by sight). The 18th of March was the big day. I was feeling confident. I had a scan about a month before, and that came back clear, AND that was before I completed the 3rd and 4th round of chemo. I figured if we couldn't see anything after round two, what were the chances of seeing anything after round 4? Apparently I was misinformed.
The procedure was everything I expected. I dressed in a slightly immodest hospital gown, drank some pretty nasty tasting contrast, was injected with radioactive sugar, and waited. The scan was fine. I was done, got dressed and went to work. I was justifiably surprised when I received a call from the bone marrow transplant unit later that afternoon asking me to come up to the hospital for an ultrasound. They explained that the radiologist noticed some suspicious activity in my jugular vein that was indicative of a deep vein thrombosis. Crap. I did what anyone with an internet connection would in this situation and googled the heck out of DVT. Double crap. this seemed like kind of a big deal. I diligently made my way to the hospital and went up to the ultrasound department. I'd evidently gotten there after closing hours because the lights were dark and I had to be escorted through darkened hallways.
The ultrasound confirmed the findings. I did in fact have a thrombus sitting a few inches from my brain, and a few inches from my heart. In my mind, this was not the best news I had ever received. I went back up to the BMT Clinic where they gave me a shot of some high dose heparin to treat the DVT. Speaking to them, they didn't seem all that concerned about the DVT at all. Maybe the internets were wrong? I decided to trust their judgement and try not to worry.
A day or two later, the news got a little more problematic. The official radiologist report came back, and the radiologist noted some ares of concern on the PET and CT Scans. When reading the report the words "areas suspicious for Lymphoma activity" are not things you want to see. What happened to the completely clean scans from only a month before? I think our entire family reverted to survival mode. It was hard to plan anything further than the next 24 hours. The uncertainty was debilitating.
We had originally scheduled our post treatment conference for the friday following the scans. Given the new information, Post Treatment was probably off the table, but I really wanted to have the meeting to try and get some more information and hopefully more context from the results. I decided to focus on what I knew first, so I asked initially about my DVT. "I'm not at all concerned about the DVT" was the Dr's response. The answer was somewhat surprising to me, cause I sure was concerned about the DVT. The internet was full of some pretty gnarly stories about this thing, and it seemed like a big deal. It's a good thing that I had a pretty high opinion of my doctor. I think this helped ease my mind about the one thing that I knew I had.
After facts were out of the way, I entered into the realm of complete speculation. "What's the likelihood of a false positive on the PET?" Answer: "False positives happen fairly regularly, and we'd never treat based on the PET results alone." Whew. "What are next steps?" Answer: "Colonoscopy in 4 days to get biopsies to confirm or rebut the scan results" Really? Another Colonoscopy? By this time the Doctor was getting way too familiar with my insides, but if that's what we need to do, what's one more camera? My final question was "Assuming worst case scenario, and it did come back, what should I prepare for?" The Dr's answer demonstrates why doctors will never be hired to work in advertising. He responded that the next step would be to bring me back in for "Salvage Chemo" and then an allogeneic bone marrow transplant ASAP. Can you think of a worse sounding name? It sounded like I was a broken down car on it's last legs who was just about to be taken to the junkyard. Horrible name. Natalie and I started to brainstorm better names than "Salvage" I think my personal favorite was "chemo EXTREME" you had to say chemo in your normal voice, but yell the EXTREME Part. For some reason the thought of doctors and nurses having to raise their voice in describing the regimen mad me smile.
Happily, all of the worry, the speculation, and the sleepless nights were for naught. The colonoscopy came back yet again with absolutely no indication of lymphoma, and the GI Doctor was even able to articulate a medical justification for why the scan might have come up with a false positive. All was right with the world again.
I now find myself feeling increasingly confident that we have this thing figured out.
I sometimes joke with natalie that I have two superpowers. The first is my impressive ability to keep and grow my eyebrows even in the face of aggressive chemo,
the other is my ability to rationalize, forget and all around fool myself into seeing and remembering the positive. I've found this has been a useful skill for cancer patients.
Despite my natural optimism, I've been struck by what appears to be the patent unfairness of cancer. Cancer is no respecter of persons. It doesn't care who you are, your age, your background, or your situation in life. Recently I've heard of a number of people who are close to me who are likely going to be forced to experience trials similar to those I recently passed through. My heart hurts for them. I don't know if there is anything that can truly be said to ease the difficulty of the coming months, but for me the words of Elder Henry Eyring, a leader in my church, provided me significant comfort, even though I cry like a baby when I hear them.
Sometimes we are given mountains to climb. We should know that we have divine assistance in climbing them.
