When the shoe doesn't fit

At the hospital infusion room, there's a white board that is full edge to edge with thank yous, gratitudes, lifelaughloves, and one in particular that I hope never gets erased: "37 years since my original diagnosis. 24 years this year every 3 weeks. Thank you!" A glimmer of longevity in the land of incurable disease takes what up-close looks like a finish line and punts it so far out of sight that years recalibrate into decades. I think it's one of the greatest gifts any stranger has shared on a white board. 

It's been 6 years since my diagnosis.

Yesterday, we learned that the drugs that have been keeping my disease stable are starting to lose their magic. The growth is very, very small, but it's time to consider other options as this, after #27 infusions, is possibly a little white flag of surrender from the drugs that gifted us the last year and a half. I have some more tests this month to help us decide our next move. It's not at all uncommon with this type of sarcoma that chemo works, then doesn't. We knew this. We have a list of options. Nonetheless, we had a good thing going with our first choice, but the shoe no longer fits and it's time to get new ones.

I'm so lucky. 

Six years ago, I went to a follow up appointment with a sarcoma specialist after I had surgery to remove the initial, solitary tumor. I was then cancer free. He recommended chemotherapy at that time--a drug called doxorubicin, or "the red devil" to it's closer known friends due to its cardinal hue. It's commonly used for many different types of cancer, but on the toxicity scale of chemo drugs, it's up there. The OGs to this journey will remember that I declined chemotherapy treatment at the time because I couldn't make sense of not having a measure if the chemo was working or not because again, I didn't have cancer.

I didn't know this at the time, but doxorubicin is a drug that has a lifetime limit. Though I've heard of an odd exception or two, one can have 6 rounds in their life, tops. If I had taken it in 2019, I couldn't take it again ever.  Fast forward to now, there are studies that show that doxorubicin in combination with another drug (with too many letters that I'm not going to go find right now) has a significantly higher success rate against sarcoma than doxorubicin alone. My oncologist was thrilled that we still have this card to play and the benefit could be much, much greater than if I had gone ahead with treatment in 2019.

I'm so lucky.

Dr Wu has been my primary oncologist for almost a year now and I've been incredibly easy on her. I see her every time before chemo and it almost seems like a joke--just a quick stop in to check that my labs look great and head on up to the infusion floor. This was our first challenge, and I have to say, I'm in very, very good hands. She did so much work before our appointment--consulting with the sarcoma team, making multiple options for us to talk about, setting us up with a private class to cover any questions that will inevitably come up. Her confidence gave us confidence. Every time I looked at Leannda, it felt like, yeah, ok, we've got this, then Dr Wu sent us up to the 2nd floor for my infusion. 

Left alone together with all of the information and in the absence of doctor confidence, sadness hit first. We grieved the loss of the plan of White Board Hopes--just keep doing this for 24 years, every 3 weeks. I asked Leannda if we should reschedule my infusion because the days after chemo aren't my greatest thinking days, especially when it comes to big important decisions with lots of things to process, and we have big important decisions to make with lots of things to process. We decided to stick with the infusion because the urgency for changing the protocol is actually quite low. Protocol needs to change, but it doesn't need to be tomorrow. Check.

Confidence was coming back and sadness exchanged with an overwhelming love for being alive, for being with my person, for being together in a beautiful place and finding our way through all of these next interactions with reception and the medical assistants and the volunteers and the nurses that we were going to spend the rest of the day with that were going to be just a little bit different than usual. It was a major level-up of Introvert Brave to have "bad" news, but then go towards people, share the news, and let them help us to feel better. They are all there because they want people to heal, but they also want you to feel loved in the process. 

I'm so lucky to be here so far beyond the time that statistics told to be unlikely. The gratitude is indescribable.