Dear eDiary and the viewers at home,
It's been over half a year since my last post. In that time, I've probably changed 600 diapers, eaten 500 meals, taken 5 work trips, 5 fun trips, 25 trips to Maine, and had only 20 doctors appointments. Life post-cancer has many fewer appointments.
In post-cancer news, I hit 2 years 7 months in three days.
Cue the balloons...or so I thought.
I saw my oncologist earlier this week to commemorate the six month appointment mark - meaning 2.5 years since diagnosis. I was quite pleased with myself for making it this long. While I still can't use the word "survivor" for myself without air quotes (because I know the risk of recurrence is still around 35%).... I thought at 2.5 years - I'd get a little participation award. A small gold star pinned to my medical gown. A hushed golf clap from the audience watching at home. ...While maybe a whole ceiling of balloons wouldn't fall, I might get some some Kesha-style glitter trickling down from the ceiling when my oncologist said the words "two and a half years since diagnosis."
But - it didn't really go that way. Instead - the messaging was much more direct / somber. There'd be no glitter or balloons till five years. While I should celebrate every day, my risk wasn't materially different until five years. If we want to have another baby, which may not be possible because chemo is so hard on the eggos, we'll really need to weigh the potential risks of doing that - and every day closer to five years is better.
Maybe I fixated on 2.5 years because it seemed achievable, while five years was just too darn far away to seem real. Maybe I filled myself with extra hope (that I didn't really need anyway) because 1.5 years (almost) after ending chemo - it seems like c*ncer was in the rearview. Maybe I wanted to take down the air quotes around "survivor". Maybe I just wanted to feel normal again. But - for whatever reason I'd built up inflated hope, my 2.5 years fell flat - deflating rather than inspiring.
More medically - they are monitoring a spot in my breast - I'll need to continue having that scanned every three months to ensure said spot hasn't grown. She also recommended full body scans in October, so if we decide to try for G2.0, I'll know if it's back before trying again. As we all know - cancer while pregnant isn't really great for anyone.
Sort of a ho hum cancer week and not happy (though not awful) news.
Desmoid Tumors: Some of you know this, but for those that don't - at my two year appointment, I had a new spot - on my femur - one that they didn't really think was breast cancer, but I needed to have biopsied. The biopsy showed another desmoid tumor. With three in a million odds, I really didn't think it was possible to have another weirdo disease.
But - c'est la vie - it was. I have four tumors - one growing through my sciatic nerve, one the size of a softball on my femur, one wrapped around the hip joint, and a smaller satellite one hanging out in my bottom region (junk in my trunk!).
Now - my walking is limited. I am in pain most of the time. The pain levels reach a 10 sometimes.
There are a few potential paths for remediation - regular meds (failed on me); radiation; oral chemo indefinitely; surgery with a 50% recurrence risk; cryoablation - which is googleable, but a little gross looking, so will spare pictures here - basically, freezing the tumors in place; and high intensity focused ultrasound (HIFU).
I went to SFO to see a superspecial specialist. He recommended cryoablation, which I'll have done on 7.12 at Mass Gen. Hopefully I'll get pain relief and kill the tumors.
In summary, though I have only had 20 doctors appointments, they've all been pretty action packed. If you pray / hope / send good thoughts to the air...please continue to send them out because 2.5 more years seems really far away.
It's been over half a year since my last post. In that time, I've probably changed 600 diapers, eaten 500 meals, taken 5 work trips, 5 fun trips, 25 trips to Maine, and had only 20 doctors appointments. Life post-cancer has many fewer appointments.
In post-cancer news, I hit 2 years 7 months in three days.
Cue the balloons...or so I thought.
I saw my oncologist earlier this week to commemorate the six month appointment mark - meaning 2.5 years since diagnosis. I was quite pleased with myself for making it this long. While I still can't use the word "survivor" for myself without air quotes (because I know the risk of recurrence is still around 35%).... I thought at 2.5 years - I'd get a little participation award. A small gold star pinned to my medical gown. A hushed golf clap from the audience watching at home. ...While maybe a whole ceiling of balloons wouldn't fall, I might get some some Kesha-style glitter trickling down from the ceiling when my oncologist said the words "two and a half years since diagnosis."
But - it didn't really go that way. Instead - the messaging was much more direct / somber. There'd be no glitter or balloons till five years. While I should celebrate every day, my risk wasn't materially different until five years. If we want to have another baby, which may not be possible because chemo is so hard on the eggos, we'll really need to weigh the potential risks of doing that - and every day closer to five years is better.
Maybe I fixated on 2.5 years because it seemed achievable, while five years was just too darn far away to seem real. Maybe I filled myself with extra hope (that I didn't really need anyway) because 1.5 years (almost) after ending chemo - it seems like c*ncer was in the rearview. Maybe I wanted to take down the air quotes around "survivor". Maybe I just wanted to feel normal again. But - for whatever reason I'd built up inflated hope, my 2.5 years fell flat - deflating rather than inspiring.
More medically - they are monitoring a spot in my breast - I'll need to continue having that scanned every three months to ensure said spot hasn't grown. She also recommended full body scans in October, so if we decide to try for G2.0, I'll know if it's back before trying again. As we all know - cancer while pregnant isn't really great for anyone.
Sort of a ho hum cancer week and not happy (though not awful) news.
Desmoid Tumors: Some of you know this, but for those that don't - at my two year appointment, I had a new spot - on my femur - one that they didn't really think was breast cancer, but I needed to have biopsied. The biopsy showed another desmoid tumor. With three in a million odds, I really didn't think it was possible to have another weirdo disease.
But - c'est la vie - it was. I have four tumors - one growing through my sciatic nerve, one the size of a softball on my femur, one wrapped around the hip joint, and a smaller satellite one hanging out in my bottom region (junk in my trunk!).
Now - my walking is limited. I am in pain most of the time. The pain levels reach a 10 sometimes.
I went to SFO to see a superspecial specialist. He recommended cryoablation, which I'll have done on 7.12 at Mass Gen. Hopefully I'll get pain relief and kill the tumors.
In summary, though I have only had 20 doctors appointments, they've all been pretty action packed. If you pray / hope / send good thoughts to the air...please continue to send them out because 2.5 more years seems really far away.
