Weekly Update #90

I am definitely not keeping up with the “weekly” claimed in this entry’s title, but am here today and not going to overthink it.

I want to talk a little bit about why I have been writing so infrequently. Some of it is lack of energy. But some of it is that I feel like I only have bad news to share recently, and I want to talk frankly from the place of beginning to accept that I have probably moved from chronic to terminal disease. It is a bummer to share this stuff and feel like I am hurting the people that I love. I don’t want to cause pain. But I have realized recently that keeping it all inside is contributing to how badly I have been feeling. Each time I share my worries a bit I have an immediate energy boost afterwards. And I want this to be a place for me to be honest about the good and the bad. So, I am going to show up more, and if you want to keep reading, it may get harder.

I did get my second dose of my trial drug at MD Anderson last week and stayed a few days for blood work, which was all uneventful. I also had my day 8 blood work earlier this week. The plan was that then next week I’d go in for day 15 blood work and then the week after that for my scan and hopefully dose 3 and from then on my commitment would drop significantly, to only showing up for my infusions every 3 weeks. Unfortunately, we’re changing the plan.

On Wednesday of this week I felt awful all day. Blacking out when I stood up and so short of breath and alternately sweating and covered in goosebumps. And then I passed some blood in my bowels, which is especially odd since they aren’t hooked up to the rest of my digestive system, and I threw up. At that point I called my trial doctor and she told me to go to the ER. I cried while I listened to her instructions, so scared to head into an ER right now, knowing she was sending me because the COVID risk was worth it. She told me that the blood I was passing was likely from the tumor in my colon, which makes sense. Then she added that it is likely a sign that the tumor is growing, so she is going to move my next scan up by a week. She did also mention that shrinking tumors can bleed, but didn’t seem to think that was as likely.

I only spent a few hours in the ER. They did a COVID test, which was negative, and some generic blood work which all looked good. They also did a chest CT which showed no blood clots (a concern because I was so short of breath) but possibly the start of some pneumonia. So they sent me home with antibiotics and instructions to come back if I felt bad again or got a fever. I am truly glad they only scanned by chest and not my pelvis. I was not ready to learn what is going on, alone in the ER on the night before Thanksgiving. I am happy to spend these few days blissfully ignorant and then deal with the news next week when I receive it.

Oh, I should mention that I had an ultrasound earlier this week to check on my hydronephrosis and the test showed it looked the same. So, still no need for a stent, yay. I also learned that I had no idea where my kidneys are, definitely not the area of my pelvis that has been hurting and I have been imagining is my kidneys swelling to bursting. Unfortunately I looked it up and the part of my pelvis that has been aching off and on for weeks is where my appendix is, so I’ll be bringing that up with my MDA team when I see them next week.

For now I wait for my schedule at MDA to update so I know when to show up for my scan and the results. I have a local cancer friend who has his regular MDA appointments next week as well, so we’re going to try to meet up and even possibly have him come with me to the appointment where I get my scan results, so I don’t have to go alone. I’m not allowed to bring in an outside visitor, but if he’s already allowed to be in the building, I don’t see why he can’t join me for my appointment.

My joy for this week has been the family time together. Thanksgiving yesterday was a wonderful day of cooking and eating and time together. My daughter took all the initiative on planning the activities for our annual advent calendar and I am bursting with pride at her resilience and creativity. I hope you are all having wonderful time off and not traveling anywhere to see anyone, to help keep people like me safe.

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.