Wow. I'm blogging. Like 50 million other people on my street alone. I feel like I have to start apologizing and putting the disclaimers out there right off the bat. Because I'm already feeling self-conscious about this blog!
I'm starting this to document the next few months at least as I embark on a cancer journey (and all the B.S. that comes with it). Another purpose is to give me something to do while I'm laid up. I imagine those will potentially be the most boring blog posts ever b/c I don't anticipate a lot happening while I lie in bed watching daytime TV, but who knows.
While I'm like 50 million other people with the blogging, I'm like only 300 other people in the U.S. each year in another sense. For background, (and for whomever might be searching for people like themselves) I was diagnosed with chordoma on October 1st. It's a rare form of malignant tumor. Mine is located on the tip of my tailbone.
At the moment I'm pursing "fertility preservation" so that I could have another child down the road. I'm 35 and I already have a 22 month old we'll call "C". I'm starting that process tonight...whoopee! I want to document that too.
November 30th I am starting radiation treatment for 28 days. Then I will "heal up" for a month and will probably have surgery in early February. They'll just cut off my coccyx (OK, get the jokes out of the way) and throw it out. Then several weeks of recovery and a couple more weeks of radiation and then I pray it doesn't come back.
This is a strange place to be in as a 35 year old woman. For one, this doesn't happen to anyone very often, much less to someone my age. And I was also one of those people who never got sick. I am not particularly the saintly, heroic type who gets cancer young and is especially admirable about it all. I'm not the Lifetime movie type. I'm hoping that maybe this will be a transformative experience in a positive way, for both me and for my family. Maybe we WILL move to Costa Rica and run a zipline company (full disclosure: I am afraid of heights and have never been on a zipline aside from the local rec center's, which was probably 20 ft. high max.)
I have a good tolerance for pain. I did have natural childbirth.
So I want to jot down this experience and I guess I'm doing it in the way everyone does it these days. I don't know if I'm supposed to "market" this blog. I don't know yet if I'll care whether or not anyone reads it (or be embarassed if someone does!). I know it won't be a totally typical mommy blog. And I hope it won't be a typical cancer blog. I don't know yet how I'll feel about people I don't know very well knowing intimate details of my life. Maybe, (hopefully?) it will transform into one of those mundane blogs where people post about how much their Iphone has changed their life.
But here goes.
AMG
P.S. For anyone who happens to stumble on this b/c you have chordoma, please do give a shout out.
Okay, so I don't know anything about Chordoma, but because I'm your friend, I'm interested. I'll have to do some research. My friend's mom recently got diagnosed with another rare form of cancer called multiple myeloma (it's cancer of the plasma cells in the blood). I'm happy the prognosis is good and that you have access to the proper treatment. Most of all, I think it's super cool that you have a blog. I think you overestimate how many people blog...I don't even know how to blog (and just recently figured out what a blog is). Anyway, I'm sure people will be interested --blogs are a great way to get the information out there and get it out in a very personalized, accessible way. I'll be reading and checking in on you, babe.
ReplyDeleteTurf - thanks for sharing. I'll be thinking of you and will be sending as many well thoughts as I can as you go through this...take care of yourself, and thank you for sharing.
ReplyDeleteAQ
ok, so I will be your first actual chordoma survivor. I was diagnosed 7 years ago and yes it was a bummer!! I was older than you and my daughter was a senior in high school. I did research and found out a lot of nasty stuff so I cancelled my appointment in Birmnigham, AL and went in search of the Holy "Doc" to do the intial, but most important surgery. My chordoma was a clival and was quite large in my head. It had insiduously wrapped itself around my right optic nerve, my right eustachian tube and my right carotid artery. It was on the verge of invading my brain and I was told...do nothing...you have 3 months left...what a great choice.
ReplyDeleteNeedless to say I got a few other opinions, 7 to be exact, and picked a great neurosurgeon in washington, dc to do the initial crainiotomy which only lasted about 9 hours. I stayed in the hospital for 4 days and recuperated in dc for another 3 weeks and returned to a semi normal life. I have since had a few other crainiotomies...oh, so much fun..but the tumor has never returned and I do lead a productive and normal life. there is light at the end of the tunnel...although on some days I could swear it was a train...still I like your spunk and humor. On my third crainiotomy I told my doctor he could take everything out, but leave the humor in. He is still trying to understand me. When I was presented in a medical conference in Chicago..I asked if I should come and bring my white dress to be presented in...being from the south, one is only presented in her white ball dress. He NEVER got it! oh well, keep up the blog and I will still be hear to read and comment. Norma