24. Fed Up
I am fed up with cancer. I am fed up with treatment, treatment options, the diet, the medication and supplement protocols, all of it.
My results from my last scans weren’t terrible, but they weren’t great either. I have progression in my spleen, liver and right ilium. The brain MRI shows that the one lesion that was 0.3cm is now 1.2cm, with another couple of smaller ones to keep it company, and now there are quite a number of detectable spots in my cerebellum, cerebrum and brainstem… meaning that it’s very definitely on the radar needing timely attention, and that the angiogenesis inhibitor Cyramza hasn’t worked to starve the tumor cells of blood supply. All of this in eight weeks.
I’m so angry. Angry, sad, and bitterly disappointed. What it feels like is that all of my hard work has been for little gain. In reality I know that this isn’t true, but it sure feels like it when you’re kicked in the guts -- again. And ironically, I’ve had a stomach bug for the last two weeks that I’ve had a hard time kicking because of my compromised immune system, which has been tedious (and shitty) to deal with. Kicked in the guts twice over. I’ve been pretty damn miserable these past two weeks.
I can feel the movement of that cancer in my abdomen, and with it comes the anxiety of progression, moving in the wrong direction and shortening the runway. On the plus side, we’re still not near the level of tumor load or discomfort that I felt while at NIH in October last year, I can still take a full deep breath without pain. And maybe more importantly, I have confirmation that my intuition is spot on, and along with my self-awareness gives me real-time information that I don’t need a doctor for. And it’s this same intuition that keeps telling me I’m going to be fine. That I have to go through the process, long and hard as it might be. That there is something to it that I need to experience -- to learn, or teach, or whatever, that I’ll be clearer on that part somewhere down the road. It’s the long, hard part that is difficult to manage right now. I guess that brain radiation is now part of the process too. Bugger.
I’m in the process of figuring out what comes next, and that does make me feel a bit better. I’ve been to see my integrative doctor in Phoenix and have an appointment with M.D. Anderson in Houston at the end of the month, and possible radiation or something else in between. I’ll see the radiation oncologist next week and discuss what should come next with my brain, and what my integrative doctor in San Francisco thinks we should do next. Let me please say again that the money we fundraised through your heartfelt generous donations makes at least the financial part of this decision much easier. Thank you for that freedom, it is such a gift.
This week I’m at the beach in Florida with the Cuban side of the family. There are 20 of us together -- eating, laughing and spending time at the beach with our feet in the sand. One of my favorite parts about this annual tradition (which we were at just two weeks before diagnosis last year), is seeing Dave embrace this part of his culture with people that he deeply cares for. I just adore experiencing that. Physically connecting with the love and support that my extended family gives is highly restorative.
For the last month I’ve needed this break, a proper break without doctors or appointments. And in being here for a few days, I’m still having a hard time putting into my anger and sadness down and completely relaxing. I can do it for moments, but it creeps back in. Since the scan results I’ve been bingeing on carbs and sweets and lack the willpower to stop it. There is an underlying thought that I definitely have to address RIGHT NOW about feeling that if I am indeed running out of time, then I should eat croissants for breakfast, no?! While I do love a good croissant, it’s in conflict with my intuitive sense about my diet and probably making matters worse. I know that healing isn’t linear and I’m in no mood for self-sabotage.
So here we are again, Cass. Getting up from the dirt and having to dust ourself off to keep moving forward. To have to deliberately address not only treatment next steps, but the anger, sadness and disappointment that so easily flares, that distracts and derails from the task at hand. To steal Dave’s analogy, it’s like hiking up a mountain with two broken legs on crutches.
And with that, I’ll be back in touch when my tan is darker. Happy 4th!