These past two weeks have been unreal. We went from jetskiing, bonfiring, laughing, planning out our summer to hospitalizations, tumor fevers, biopsies, drain tubes, etc. This cancer is a beast and I had zero indication of tumors a month and a half ago and now I have 3 (2 in my abdomen and 1 in my liver) with the biggest tumor being 6cm. Scary stuff and it seems like some days this is a movie or story with some shock value, when in reality, this is now our life.
I had my first treatment yesterday. One down, 51 to go. Mucosal Melanoma doesn't respond generally to your standard chemo drugs, so we are doing immunotherapy, which is an infusion administered much like chemo. The combo they have me on is called Ipi/Nivo and I will be getting treatments every two weeks. Ipi and Nivo are two immune checkpoint inhibitors that “release the brakes” on the immune system, allowing it to mount a stronger and more effective attack against cancer. So pretty much they are putting my immune system on crack to fight this bastard.
The tumors and the fluid in my belly make me appear like I'm about 7 months pregnant. No clothes fit, I wear an abdominal binder to hold the belly for me so I can get around easier. I always wanted to know what it felt like to be Humpty Dumpty. Now I know. 😂 Trying to find comfort amiss the fevers, inability to eat, and the belly pain has been our biggest obstacle. It's a new normal, and we are quite good at adapting, we just need a bit more time, I suppose.
By making this all public, we were hoping to rally the troops and gain support and we are just in awe and so very grateful by the love we've received. But there's a downside to going public. There seems to be a huge responsibility to answer thousands of questions, texts, comments that we just cannot keep up with. Our energy, right now, HAS to be directed towards fighting. Please do not take personally if we don't return your calls, texts, etc. Every minute I have right now is being used to get through to the next. I've had very few good days and I've been hospitalized many of the days since the dreaded day of July 1st when we received the news... (continued in comments)