Weekly Update #5

Well, it’s about time for some good news! I got home yesterday from a great trip to see my doctors.

First up, I met with my new medical oncologist to discuss the results of a new scan. And it was all good! There’s no new cancer and the existing spots were either stable or smaller. I’ve only had 2 doses of chemo between the scans, so I’m pretty excited about that. In addition to loving the scan news, I love my new doctor. She is warm and an excellent communicator and made it clear she will always be honest with me. I asked her about my outlook and she is incredibly hopeful. She feels like I have had a relatively small amount of treatment over 3 years and just to be where I am is incredible. We have a lot of options still available to us. She also said that there’s no statistic that applies to me, I keep defying the odds, and she is optimistic.

It is so overwhelming to hear good news. It’s a little scary to hope, opening myself back up to have those hopes dashed. I’m slowly processing the news and hoping as the feelings really hit me I’ll feel more comfortable in them.

The other good news from this visit is that I had a pain procedure, a nerve block. While my pain is super low now, it’s partially because I don’t do any things that would make it hurt, and there are plenty of things I’d love to do that are on that list. The biggest is that I can only lay on my back, which is not a comfortable sleeping position for me. I’ve resisted this procedure because in theory they only last 3 months and I’m loathe to sign up for a procedure I need 4x a year for the rest of my life. But I really miss laying down to sleep and relaxing my body. So we’ll see if this improves my quality of life.

So it’s back to chemo every other week and a scan in a couple months. The next couple months are super busy in our personal lives, so fingers crossed that I feel well enough during this treatment period to enjoy it all!

My First Tattoo

Tattoo of a seam ripper with banner “no regrets” on my forearm

This week I got my first tattoo. I’ve been planning it for a long time and waiting for the opportunity to get it.

It’s a seam ripper, a tool used in sewing to tear apart seams. I wanted to get it tattooed on my ribs with the point going into one of my scars. It represented how I didn’t mind the scars because they got the cancer out and was a private message on a private part of my body. The plan was to get it when my treatment was done so I knew no new scars would ruin it. Unfortunately, I wasn’t able to follow my plan.

I wasn’t able to follow the original plan because my treatment will never be done. My cancer is not curable. To lengthen my life I will be in treatment for the remainder of it, it won’t be over until my end. This week is what may be my only opportunity to get it – I’ve been off treatment for over a month and it starts again next week. I’m so glad my awesome tattoo artist was available on short notice. He did an incredible job and I am wildly in love with it. Moving the tattoo to my forearm captures the change in meaning; I want the world to know that I don’t regret the treatment I have to go through that tears me apart – it is what allows me to be there each day showing off the tattoo.

What comes next is a couple weeks of radiation to my ribs (exactly where I wanted the tattoo) to reduce my pain. At the same time I’ll return to the chemo regimen I’ve been on, since it seems effective in keeping my cancer stable. That’s all I officially know. The guess is I’ll be on this chemo for a long time. There are some new drugs that are effective in lung cancer and my doctors think they’ll be available for colorectal cancer relatively soon, so maybe I’ll try those eventually. Right now I’m outside the standard treatment plans, we’re developing then scan by scan.

It’s tough to know what else to say about my cancer being incurable. The word they use is chronic – I’m not near the end and I’ll live with this disease for the rest of my life. One doctor said 3-5 years, the other refused to give a range, said we’ll just have to see what happens. I’m trying to balance hope (that new drugs will be developed in time to change the picture) with accepting the reality in front of me and living it. My daughter doesn’t know and I don’t plan to tell her while all I have are guesses and wishes. But I’m telling you because it is too hard to have this inside of me and not share it with the people in my life.