Survivorship

I don't have a particular date that I can call my 'cancerversary.' I know that about a year ago I was pretty sure I had cancer and had started taking steps to find out. March 10th was the day I was assessed by a caring and compassionate oncologist who, though she could not definitively confirm that I had cancer, told me that it was very likely. It was not until around March 25 that I finally heard the words, but hearing the words really just confirmed what I already knew.

So now, with the 'big three' cancer treatments done (chemo, surgery, radiation) and some preventative immunotherapy and hormone therapy underway I am trying to figure out how to define myself. I am no longer calling myself a 'cancer patient' although I still hang out in the chemo suite from time to time. Maintaining this connection to the Cancer Centre makes it difficult to NOT feel like a cancer patient and also offers an ongoing connection to my caregivers so that I don't feel abandoned. Often, when treatment ends, patients feel isolated and have trouble coping with the long waits between scans. 

Nobody will tell me that my cancer is cured, only that they have done all that we can to treat it. There is no way to know if a few cancer cells are lurking somewhere inside me. I choose to believe that they are all gone even though the immunotherapy floods my veins every 3 weeks to destroy any stragglers. 

My chance of recurrence in the first 5 years is around 18%. I'm not sure how to feel about this number. Is it big? Is it small? I know all of the things I can do to reduce my risk of recurrence - eat well, exercise, take my meds - but I also know that risk is risk. I could eat perfectly and exercise properly and do everything I should and the cancer could still come back. I could also choose to ignore all of the advice on reducing risk - live on beer and chips and binge watch TV - and the cancer might never return. That's the thing about risk. Nothing is for certain.

So, for now, I am choosing to take control of what I can. I'm eating well and exercising and paying attention to other aspects of my physical and mental health. My immunotherapy is hard on my liver so I have decreased my alcohol intake to a maximum of a drink or two a week. Sometime in June I will have a scan to check for signs of disease. If that scan is clear, another one will be scheduled for months after that. And between scans I will control what I can and try not to think about that 18%.

I'm figuring out what this time of 'survivorship' looks like for me. There is a strong urge to try to get back to normal (or a 'new normal'). There is also a competing urge to say 'YOLO' and think about what I would want life to look like if my time were more limited. I'm not trying to be morbid, but I have wondered how it would feel if I went back to work full time only for the cancer to come back in 3 or 4 years. Who wants to spend all their time working when the time you have to feel strong and healthy may be at a premium? Certainly my perspective is different than it was a year ago. I'm much more optimistic than I was before my diagnosis, to be honest, because until I knew what I was dealing with it was hard to not imagine the worst case scenario.

For now, I will continue to focus on developing good habits, managing my symptoms, and getting my brain and body ready to return to work. My brain is better than it was during chemo, but I am still finding it challenging to focus and organize things. My volunteer work with Science Fair feels like a huge job right now, because for me it IS a huge job. My executive functioning has definitely taken a hit, so I have to rely on carefully made lists and re-read things I write over and over to make sure they are correct. Small problems feel like huge problems until I break them down into smaller pieces. All of this is OK because it is helping me learn how my brain works and what I need to do to manage going forward. I can say that I am seeing improvement over time but that there are days I feel I regress and the brain fog feels very real. 'One day at a time' is a really good mantra for right now.

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My parents celebrated their 50th anniversary this past weekend! We had an amazing party to celebrate and it was great to feel so close to everyone. I haven't done any weaving updates in a while, partly because I was weaving these scarves for them as gifts. The warp (lengthwise strands) and weft (widthwise strands) both have information encoded in them. I haven't told mom and dad what the information is; they're retired, so they have lots of time to figure it out. :)

Picture of the whole family at the party

Anniversary scarves