Partially because I've been in a bit of a limbo until my MRI this coming Monday, but also because while I'm not going to stop fighting, I have lost a smidge (just a smidge) of hope.
Some of you already know that almost 2 months ago, I had a CT scan. It showed that in the abdominal area, things looked great post Y90. No new tumors, no tumors growing in the right lobe of my liver, and that left lobe, well, it had grown by 19%, which, while it wasn't enough for surgery (yet), is still a sizable amount!
There were some lymph nodes down in my abdomen that were larger than they should be, which indicated further looking into, but they didn't see any tumors/lesions/etc. So, in summary, abdomen area, all good. My MRI to check on that left liver lobe was scheduled for the pre-procedure protocol timeline of 2 months late.
Then we came to the chest CT.
Ah, different story there. 3 nodules had appeared between my two lungs, too small to biopsy, but definitely bad news bears. The follow-up with my oncologist (including bloodwork to check my CEA markers) determined that those nodules are almost certainly cancer.
Had a good chat with my amazing oncologist about focusing on my liver because there is SO much more cancer there, and putting me on maintenance chemo for the interim...and I honestly wasn't too worried, because, afterall, previously I had been told since my CRC/HIPEC surgery that the Y90 was going to give me a pathway to NED.
Unfortunately, something my doctor said to me lingered in my head because it wasn't like her to repeat things to me unless I needed clarification, and this was said to me unprompted. She had said "At this point, we are not at a curative stage, we're just adding years."
In my head I kept thinking, why did she say that? I knew I would always be stage iv, I knew not matter what I would never be in remission or have a cure. That's not how this cancer works at this stage. I understood that NED was the best chance I had, which is very different from those other terms.
My next appointment was with my nurse practitioner who works on my oncologist's team to go over bloodwork before chemo, and all of that was still in my mind, bugging me, but....honestly by the time I went to the appointment I had realized why she said it and just needed confirmation, so I asked.
Me: When Dr. Uboha said "At this point, we are not at a curative stage, we're just adding years," did she mean that NED is no longer achievable because the cancer is in my lungs?
Her: Yes, that is what she meant.
She went on to explain that because it's in my lungs, that means it's traveling through my lymph nodes and it can basically pop up anywhere.
So, whack-a-mole again, and a smidge of lost hope.
But....I am trying to focus on the good, like, that in two months my liver's left lobe grew at least 11%, enough to sustain life, and I WILL have that surgery and be able to have a cancer free liver.
And, that just as I was getting on a plane to Maine before Thanksgiving to help a friend through something devastating, I got a call about the results from my genetic testing, and I don't carry a single genetic....anything for colon cancer, which means, I cannot pass this horrible cancer onto my boys.
Still in limbo until my MRI results, but until then, we're focusing on the positive. The shiny, lovely positives, because we can't control the rest. Every day I get to spend being in the presence, or chatting with my loved ones, blood or chosen, is a day I treasure.
I love you all more than you'll ever know.