It has been a really bad week. That is the real answer the question "how is it going?"
After a relatively hopeful, positive, but hard, couple of months, it was bound to happen. I am a human being, not a robot.
Having cancer really does suck. It is not for the faint of heart. Turns out there is more faint heartedness in me than I knew or want to admit.
Part of the reason for this crap week is related to the physical. It started last Friday. I was all dressed up, ready for my morning walk when the fever and chills hit. Over the next couple of days, nausea (including some time spent praying to the porcelain God), a major lack of appetite and, of course, my old friend fatigue joined the party. Each day is different, but generally in the morning, once I have eaten, I feel decent for a couple of hours. After that, all bets are off.
Nothing else makes me feel like I have this disease more than feeling physically sick. It gets in my head. It tempts me to feel sorry for myself (which, in my humble opinion, is one of the ugliest human reactions to adversity). It produces a level of irritability and shortness with people that can be very unbecoming. It turns me into Debbie Downer (please click here if you don't know the reference). And, proving that our minds and bodies are interconnected, it leads to some pretty anxious thoughts.
These thoughts have largely centered around the big question: will this treatment work for me? Actually, the thoughts are more about what happens if the treatment doesn't work and melanoma ends my life on this earth sooner rather than later. Some of this thinking does come with the territory, but this week I think it reached an unhealthy level. Part of this is driven by my personality. I'd describe myself a realist. I think others would argue there is no such thing, and realists are pessimists. Whatever. This quality makes me good at my profession - always thinking about what can, and probably will go wrong, and preparing to deal with it. All fine unless it prevents you from seeing the hope, from focusing on what could be.
Let me try to explain how this transformation from Julie to Debbie happened in my crazy little mind. Last Thursday, my levels of lactate dehydrogenase (LDH) were at the highest levels yet. This was not a good sign because as I understand it, LDH is released in the body when tissue is damaged, which makes it one indicator of how much tumor activity is happening in your system (i.e. the higher your LDH, the more probability there is tumor growth). That said, it is not a definitive test for anything, it just CAN be one indication of bad things. I was pretty deflated after getting this news. This was especially true because I'd learned about a week before that the tumors in my liver, which are "innumerable," grew fast between the two PET scans I have had (both before treatment started) and that the cancer has spread, in the form of a few very small tumors, to other parts of my body.
On top of this, my doctor has been debating whether or not to start me on a very high dose of Aspirin. This is because in a study with mice (you gotta love being a guinea pig on the cutting edge of science), Aspirin has shown to be a potentially effective way to essentially trap the T-cells in a tumor so they do their job and kill the thing. He's on the fence about starting me on this path because of my brain tumor. Aspirin is an anticoagulant and the amount of Aspirin I'd take would put me at risk for the tumor to bleed. Not good. So, as part of this decision making process, he has been trying to get an early indication from my blood tests and other symptoms as to whether or not the treatment is working (i.e., does he think we need to take the risk). One indicator is the aforementioned LDH. Another is the low grade fever (which I've had on and off but hadn't had for about 5 days at the time I learned about the LDH level). These fevers COULD be a sign that I have over expressed levels of something called Interleukin 6 (IL-6). I will not even try to explain what IL-6 is because I am sure I will screw it up. Suffice it to say it's not a good thing, but the situation could potentially be helped by the Aspirin.
In addition, my doctor told us that there is a correlation between side effects and the efficacy of my treatments. As of Thursday, when I learned of the LDH numbers, I was not having noticeable side effects.
Based on this very piecemeal information, I started to tell myself a story that there was a good chance I am going to be in the percentage people who don't respond to this treatment. And, I began to use every bit of information, including the symptoms that would materialize just one day later, to reinforce that narrative. The IL-6 was causing the chills and fevers. My liver function going down the tubes was causing the nausea situation to worsen. Fatigue was obviously from cancer progression.
Add all of this together and I was projecting the worst possible outcome. That, my friends, leads to a pretty depressing, negative, teary-eyed downward spiral. At least part of this negative thought pattern is a defense mechanism. It's my mind trying to protect me from future, potential bad news. If you set your expectations low, the only direction of travel is up. I know, so healthy. The power of a story.
Erick, ever the optimist, chose to tell himself a different story. He saw the sudden turn of events, leaving my LDH number aside, as a good thing. Remember, what I call symptoms, including fevers, can also be side effects, which could indicate something good is happening. A conversation ensued where I played the role of Debbie Downer exceptionally well and he was doing his best to be the optimist. Right after that, I rocked up to therapy where I paid $95 to be called out on my negative thinking (worth every penny). Not one to deride self-reflection or change, I decided that maybe the problem was me. I needed to try to reframe some of my thinking. Ahh ... the power of marriage ... and professional help.
After these conversations, I put my big girl pants on and pulled out the long list of side effects associated with my treatment. Guess what? Every single issue I was and continue to have is on the list! This reminder helped temper my negative, "I am going to die from this disease" declarative, yet totally unsubstantiated, thoughts. It could be equally be true, that the fevers have nothing to do with IL-6, that the symptoms I am having are actually treatment side effects, that I will beat this disease. I gotta say, it kind of worked. Sorta. At least I cried less, so that was good.
This morning before my second infusion, we got more more news, which I am choosing not to second-guess but rather see as neutral-to-good. My LDH levels while still not in the normal range, are at the lowest level since my diagnosis. What a difference a week makes. The guru oncologist thinks that my symptoms, including the fevers and chills, are likely side effects caused by treatment. Most of my liver-related labs are better than last week. Guess I am not in liver failure at the moment after all.
The dermatologist who works with the guru confirmed that I have no primary site on my skin where this cancer started. She thinks that it all began with a couple of melanoma cells that escaped from a mole I had removed on the back of my head 15 years ago. While the pathology report at the time did not find that this mole was melanoma, apparently it is not unheard of that these cells don't reveal themselves, a few escape (despite clean margins) and they live on in the body for years before metastasizing, host unaware. This means there was nothing I missed that resulted in the melanoma getting to stage IV. I admit, I was worried about that and the guilt that would have come with it.
And, the best news of all, I now have prescription anti-nausea meds!
Nevertheless, the Debbie Downer in me compels me to remind you (and me) that none of this means anything until we see proof in a scan that the tumors are shrinking.
This week was a real wake up call. I know I will continue to struggle with not letting my mind go to the dark places where Debbie likes to dwell, especially on the days I feel particularly bad. At least now I know better what to watch out for, and I have Erick (and my therapist) to keep me honest. Julie is a much better first name for me than Debbie.