Quality over Quantity

Yes, we have reached this point.

Ever since I returned from my trip to Portland I haven't felt very well. I have had extreme fatigue and weakness. I have been a bit short of breath, and the best way to describe it is that I can feel my lungs. They don't hurt, I am just aware of them. There is a slight wheeze in my deep breaths. I kept telling myself that it is just the Keytruda starting to work and maybe getting a little pneumonitis from the treatment (that's one of the side effects). I started to realize that something had to be off with my oxygen but when I went in for my second infusion (this round) and they would test me it would be in the normal range.
I finally called to tell them what my thoughts were and how I thought something was wrong. They got me up into the Acute Care Clinic (basically an emergency center at Huntsman) and started to do some tests. Again, sitting my oxygen was in normal range, around 96%. They then did a walking test and it dropped down to the 70's. This caused us to get a emergency CT scan. I already was scheduled for a MRI that day so it was just added to the mix. When the CT was read the doctor came in and said that there was definitely disease progression and that they had made an appointment with my oncologist for the next day and he would go over more. I knew that wasn't good. In my head though I thought that we would maybe hit it with some strong radiation or switch to something. Regardless I came up to the appointment the next day.
My team came in and we were talking about how there was definitely pneumonitis in my lungs and we would add my favorite thing, prednisone, to help take that away. Maybe pausing the Keytruda for a week or so to give it time to calm down. My doctor left the room for a minute and then came back in. Everything was different then. He said that he had sent my scans over to another Melanoma guy to look at and see what he had to see and it was what we all didn't want to admit. It wasn't pneumonitis, it was all disease with a small bit of pneumonitis. The cancer has grown substantially in the month between scans and has involved my lymphatics throughout the lungs and is growing too rapidly for any treatment to keep up. I have run out of treatment options. I am at the end of the line for things and we need to enter into symptom management, and I was given 6-8 weeks left.

6-8 weeks.

The tears started to flow as I realized what I was hearing and that we were to a point of deciding quality or quantity. I wasn't supposed to get here. We've never talked numbers. We always are optimistic. We had an unspoken understanding that we don't talk numbers because I will be the one who defies the odds. Tears were being shed throughout the room. He offered that I could do chemo again, but it would only add 2 or so weeks of life. And I would be sick. I don't want to be sick if I only have a limited time.
So here we are. I don't know what this looks like. I don't know how fast I will slowly fall ill to the side effects of the tumors and cancer taking over. Right now I feel good, look good. Prednisone helps with that. I can feel the tumors in my lungs are there, can feel that there is some progression in my bones and around my liver area. I know it's there. That is what is scary; I can't say that I don't believe the timeline.

Since the news I have been trying to tell people intimately but it is so hard and draining. I feel like the last few days have lasted a lifetime and all are blurring together. This morning seems like a lifetime away and my mind is just going a bit numb. This news that I never wanted to share is now a reality. It has already brought out some tough conversations, ones you have to have in these times. Has also brought forward the need and desire to see those I care about and hug them all at least one more time.

I don't know what this is all supposed to look like - all I know is I want to spend the rest of my time with the people I love, doing the things that make me smile and laugh and making memories. I have been so lucky to have been living out my bucket list for the past 2+ years that there isn't anything I feel I have to do. What I want is to be with the ones I love and care about. I will keep on doing things as I still feel well, and when I start to not feel well we will cross that bridge then.

For now I am right back to my motto along the whole line of this fight, one day at a time. One moment at a time, and truly one second at a time.

One day at a time.