Wednesday, May 18, 2016


"the wounds have changed me.
i am so soft with scars my skin breathes and beats stars."
(nayyirah waheed)

on saturday when we went to the melanoma symposium i knew that it was going to be rough.

it is every year to hear about the latest in treatments, patient stories (which can also be inspiring and bring hope), the latest research, etc.

but this year, when they were talking about the latest in treatment and statistics, they were talking about the exact treatment regime that i am on. it is hard to explain what it is like to hear doctors talk about statistics around treatment (like how many patients are alive at so many months after starting treatment) when you are one of those patients. it was very jarring. as hard as that was, i also take comfort that there are really smart doctors dedicating every single day to making advancements in melanoma research and working to find cures.

we also learned some stats that were new to us. washington has the 9th highest rate of melanoma within a state in the country (utah is number one). the puget sound area has the 4th highest concentration of melanoma in the country. one more time, 4th highest in the country. that is insane. there can be many reasons for that, one being that people who live here think that on the cloudy/rainy days they don't need to protect their skin. that is an incorrect assumption.

in 1930, one in 1500 people developed melanoma. this year, 1 in 50 people will develop melanoma. 1 in 50. if you think about that, within the group of people you work with/family/friends, 1 person will develop melanoma. since i am already in throws of it, i hope that i am the one person in all of your circles so that no one else i know or love has to go through this.

400,000 cases of cancer are linked directly to tanning beds. 6,000 of those cases are melanoma. even writing the words "tanning beds" makes me sick to my stomach (which technically should be "makes me even sicker to my stomach" since i am still so nauseas).

there will be 73,870 people diagnosed with melanoma in our country this year. there will be 9,940 deaths in our country this year due to melanoma.

i saw my friend deb at the seminar. she has been a stage iv patient for years, and melanoma just came back again in the fall for her too. she was on a treatment (one that is a drug i am on) and it was not successful for her and new tumors developed. she is now on a different treatment regime. i am continually sending her good vibes and love, and i took comfort that again we were both there. we were both there. but this is the first time we have both needed treatment since i met her.

the patient stories. 3 patients, all stage iv, got up and shared their stories. their fights. how they have been to hell and back and are still fighting. it is hard to hear those stories because honestly they scare the shit out of me, but it is also comforting to know that there are options to help with the fight. one woman talked about how in the years she has been fighting she has got to dance with her two sons at their weddings, celebrate grandkids birthdays, see a daughter graduate college, etc. i know how she feels. every milestone or holiday i have got since the day i was diagnosed i am so damn thankful for. every single one.

so today the nausea continued throughout the day. between that and the fatigue i felt like i got my ass kicked, and i guess that i did. but that means the drugs are doing their thing and that is good. clearly they are on the move and getting to work. so we will see if this becomes my new normal, i certainly hope not but i can only take it day by day and see how it goes.

there was a quote by churchill that was shared at the symposium.

"now this is not the end. it is not even the beginning of the end. but it is, perhaps, the end of the beginning."

i liked that one.

a lot.

1 comment:

  1. Thanks for the stats. I had no idea Puget Sound was 4th nationally. In fact, I would have suspected it would have been near the end of the list.