i can’t believe it’s been close to a month since my last post. the journal is a form of therapy and self-care that i’ve talked about with you before, and when i don’t write for awhile, i get cranky. crankster cranypants.

since june, we’ve had incredible quality time with friends from all over the country; friends have been there for us this last year and when they couldn’t be there, they showed up later. better late than never in my book.

when people ask how i’m doing, i’m good…mostly because i’m alive. but the image that pops into my head is this medieval tool, the one that’s swung around and around to gain centrifugal force, until it’s hurled through the air to land with a thud. after some intensive googling, i learned that it’s called a flail. how perfect. because in many ways, i feel like i’m flailing around, free falling and waiting to hit ground, after a year spent in the spin cycle.

i read this week about a rule of thumb for cancer: after the most intense treatments are over, it takes the same amount of time you were in treatment to feel some semblance of your own body and energy levels. i believe it fully, as i have fits and starts of energy and fatigue, digestion and no digestion, pain and no pain, sleep and no sleep, and hot flashes and normal temps.

because survivors are still relatively new in oncology, the field is playing catch up on what survivorship means. for example, no one puts a survivorship plan together for me outlining what to or not to do and what to watch for. in fact, at ucsf, i don’t get to move to the survivorship clinic until 5 years after active treatment. many cancer patients describe this flailing feeling too. we are cut loose from active treatment and the protective cocoon of regular care with a “good luck.”

depression and anxiety are shown to peak after the most intense treatments are complete. this stems from a few things. a sense, and fear, that we’re not fighting the cancer anymore. an emptiness and space that was formerly taken up by these efforts. when in treatment, we’re singularly focused on getting healthy, often without time for emotional processing. so now what? life creeps in, or in my case, floods back in. things on the to-do list compete for focus, and it can be easy to get consumed into work to cope and avoid thinking about reality, even if it feels disingenuous to the whole experience. cancer also illustrates human vulnerability and lack of control and life’s uncertainties. cancer strips away physical abilities, femininity, self-esteem, and identity. friends and family want to celebrate that we’re back to ‘normal,’ which can further contribute to feelings of loneliness.

given this, it quickly becomes clear why cancer patients have a depression rate of 25%, compared to the general population’s 7%. while i am able to get out of bed and go about my day, i can relate to broader feelings of anxiety, sadness, and loneliness.

so, i’m developing a survivorship roadmap for myself. more on that soon, with ways i’m adjusting my life to minimize risk of reoccurrence while also still having joy and pleasure (it will be a constant struggle no doubt!). things i actually can control. i’m also working on a set of my own rules of thumb or commandments for my life, that can be touchstones for how i continue to make sense and meaning of a life-threatening experience. in the meantime, i started compiling the continued treatment and appointments that i need–which is dramatically much less than it has been–with detail support from my organized friend kate. here goes:

• tamoxifen pills – daily
• physical therapist – weekly
• acupuncture – weekly
• chemo – every 3 weeks
• zolodex shots – every 4 weeks
• echocardiograms – every 3 months
• medical oncologist – every 3 months
• ob/gyn who specializes in breast cancer side effects – every 3 months
• fertility doctor – every 3 months
• integrative oncologist – every 4 months
• MRI or mammogram – every 6 months
• radiation oncologist – every 6 months
• breast surgeon – every 6 months
• plastic surgeon – every 6 months
• dietician – yearly

i’m a fairly organized person, and this is absolutely overwhelming. bananas even. mike and i talk extensively about how we can bottle up our learnings for patients and families who come afterwards. playing a role in patient advocacy and navigation comes to mind. perhaps my next career is clear. dunno. big, soul-searching existential stuff is for another day…ok? as i’m in this state, an emerging goal is to take time and look around. i’ll report back what i learn.

maybe the attached jellyfish pic from a trip to monterey bay aquarium with my family last june is a more starkly beautiful, acrobatic rendition of the flail. let’s go with it for now.
xom