Let’s start with the big news – the radiation is working! We haven’t done a new scan, but I can tell the difference in my pain and it is incredible. Just before radiation started I was at my worst. I thought about every movement I made, trying to aggravate my side and arm the least. Sometimes I lay down too hard. So much energy went into tolerating the pain that even in the same room I wasn’t present in family life. It sucks to say to your 6 year old that she gets to pick one time for Mommy to get up this morning and does she want to use it on this request? Addressing this pain has been life-changing, and the radiation is supposed to keep working even after I’m done with that treatment, so I am hoping things continue to improve.
This is one of those off weeks where I feel on top of the world. A quiet Sunday morning of knitting in my favorite chair while listening to Marlowe play in the bath with a background of piano music is exquisite. I want to hug all my friends and tell them how much I appreciate them in my life. I feel like I am doing the living it was so hard to do last week. It is not always this way; some rest weeks I feel off balance, exhausted from the boomerang of sick to well and back again.
Oh, also this happened this week. I am wildly in love.
I’m hoping to share weekly updates here going forward. I’d like to have a space to talk about the day-to-day of life with cancer without it taking over my other social media.
So, this week I got back to treatment after a substantial break. I did not appreciate it, instead I was worrying about results and plans. Just a few days into chemo plus rib radiation and I feel awful.
Talking to one of my nurses today she mentioned that an old medication I started taking anew this week causes side effects like what I’m feeling – sleeping most of the day, nausea and vomiting – so I’m hoping that’s it and it’s not just that treatment has gotten much harder than in the past.
I think there is a lot of this chemo regimen in my future so I really want to find a way to make it not entirely derail our lives on treatment weeks. That may be the case and then I’ll adjust, but I’m not ready for that mentally.
One piece of good news – my request to change to a new doctor at MD Anderson was approved. I’m going to meet her in September and am looking forward to it!
And finally, one thing I’m thinking about this week. Older gentlemen often start up conversations with me in the oncology waiting room. A theme I’ve noticed is they often share intimate sadnesses from their lives, rarely leaving room for input from me. I guess they’re more monologues than conversations. Even in these places where I’m supposed to receive care there are men there hoping I’ll take on some emotional labor for them.
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.
Today I am back at the radiation oncology office. Three years ago, nearly to the day, I was in this office planning my first cancer treatment. Moving through this same space I can’t stop layering my current experience over the one of new cancer patient me.
I park in the parking lot and remember my relief that it was free, compared to the medical oncologist’s office that is $4 per appointment. By 2018 I’ve spent hundreds on medical parking and include it in my annual budget.
I get to the front desk and fill out the same paperwork I did in 2015. I have to do it again due to the length of time since my last treatment here.
My name is called by a familiar face. We reintroduce ourselves. In the hallway I run into a man with the same original diagnosis who I got chemo with my first time around. He is here getting a 6 month follow up scan, which means he is at least 2 years cancer-free. I have never been in remission that long.
I sit in a room. When I started I was so overwhelmed by all the information. This time I’m here with a CD of my previous scan, cancer notebook #2 (the first one is all filled up) and I log onto one of my medical portals to print out the reports from the 4 scans from the previous 6 months.
I meet the doctor. It is a different one, but like the last one he is smart and honest and a good listener. In 2015 we spoke about how we hoped the cancer would be out of my life forever within 4 months. Now we talk about how most diseases are chronic, in all of medicine, and that they work to increase the quality and length of life of the patients. It is as comforting as the original discussion about my curability.
I do my planning scan and get my markings so they can line me up correctly for each session. Just like last time, I strangely love the markings. I like how they make my body look and feel comforted when I touch the waterproof stickers. We reserve my time slot, this time without work to plan around.
I leave and wave goodbye to everyone on the way. I am looking forward to coming back here – to see this team and to get the radiation that will lessen my pain.