First of all, thank you all for sending your love and support my way. Can't tell you how much I feel lifted and comforted by your emails and calls. ;) I feel so incredibly lucky to have you in my life.
On the boob front, I'm working hard at being my own quarterback between the various departments at the hospital. With insurance still falling down on some fronts, the hospital staff is reluctant to schedule tests and scans that the surgeon wants....despite the fact that I've thrown down my credit card and asked them to not hold up on anything that the doctor wants. I'll fight the insurance company later, I tell them...just schedule the tests!
When I return to LA I'll have a CT Scan, along with all of the other pre-op testing on the 2nd and 5th. This scan should help the doctor tell if the cancer has spread, along with the results of the lymph node biopsy on the 7th. Insurance won't cover the PET scans that the surgeon wanted...but Dr. Chang (my surgeon) says that she's ok with only the CT Scan for now. She even had to appeal to AETNA with a peer to peer discussion to get the CT Scan approved!
With the only unknown being whether or not it's spread, I can't tell you how much I'm looking forward to getting the results of the pathology back so I can breathe easy!
In a strange way, this process is reminding me of when I bought my first house. You have to stay on top of the builder, the contracters, the lawyer, the mortgage broker and the bank in order to make sure that things are done right and you don't get screwed. Only this time, it's my life on the line, not money or a silly house.
Thank God I was given a set of ovaries that act like balls (sometimes), a brain with enough capacity to understand some of this stuff, and a mouth big enough to speak up. I truly worry for those who are sick, who are shy or don't have the tools in one form or another to be their own advocate!
Thursday, December 25, 2008
It's Christmas. 2008. This year I was given the gift of clarity. I have cancer. It wasn't even wrapped up nice under the tree. Jeesh.
Two weeks ago today I went in for a follow up on the removal of a tumor in my breast. Doctors were 99% sure it was benign. It was healing nicely, so I figured I'd be in and out in five minutes. Well. Not so fast. "Scar is healing nicely...now we have to talk about the biopsy. It's serious." Wow. All I remember after that was the word "aggressive". At that moment a deluge of emotions flooded my brain. So much so that I thought I was going to vomit on the poor surgeon. Room started spinning, and - I'm not gonna lie - I lost it. In a big way. While I had a million thoughts crashing in, the first overwhelming feeling that I had was one of extreme loneliness. I happened to be alone at the hospital, but that isn't why I felt lonely. Next thought was insurance, which at that time, had just denied my surgery a week prior. (more on that cluster f*ck later), then came all the 'Big' questions, ...it was all too real...and surreal at the same time.
Just the night before, I had a naked audition for Mrs. Robinson, concerned about my little scar, and now in a few weeks I have to have a mastectomy, followed by chemo. Whoa. Crazy, right?
I'm the healthiest person I know ~ how does this happen? Indiscriminate Bastard, Cancer.
So, that was December 11. The next day I was supposed to fly to NY to move out my furniture of my NY apt to get ready for the new tenant, and spend five days on a tweener holiday with my friends and family. Instead, I was at the hospital at 7:30am meeting with the plastic surgeon, who explained how he was going to remove my nipples, scoop out my breast tissue, and reconstruct my boobs on the same day. After that appointment, I was off to see the geneticist, who was going to take blood which would later tell me if I have the BRAC 1 or 2 gene (aka the breast cancer gene) This little lovely increases the likelihood to 60% of getting cancer in my right breast over my lifetime, and also increases the likelihood of ovarian cancer. If the test came back positive, I would have a bilateral mastectomy so this bastard doesn't come visit me again down the road.
During my genealogy meeting, the geneticist also dropped the menopause bomb on me. After I told her that I hope to have a child of my own, she looked at me sheepishly and said 'oh, they didn't tell you?...the chemo will likely stop your period and throw you into early menopause.' WHAT THE FUCK?! I was pretty sure that I got all the bad news that could be in store for me the day before. This was an unexpected kick in the gut. Lost it again.
Later I found out that LOTS of women keep their period through chemo, so I certainly plan on being one of them. If determination has anything to do with it, anyway ;) I also heard about women who were actually pregnant when diagnosed and are now healthy mothers to healthy children.
Throughout the first two days, my dear friend Martha was there with me the whole time. She stayed over, hugged me, drank with me, took me to the doctor, and to the airport. My neighbors, Goga and Miguel were also there showing support and positivity. I can't ever tell them how much their love and support means to me.
I rescheduled my flight to NY to the 13th, and left the return open, opting to spend the rest of December with friends and family. It's really weird having a beautiful apt in NY that I can't stay in now! Thank goodness for comfy couches and the best friends on the planet.
NOW FOR SOME GOOD NEWS!.....
FF to three days ago: Got a call from the geneticist with two pieces of GREAT NEWS: Not only did the genetic testing come back NEGATIVE, but insurance covered the $3,000 blood test! whoohooooo all the way around! This means that I'll only have to have one boob off, I don't have an increased risk of Ovarian cancer, and - maybe it was a good omen that insurance would stop this crazy preexisting nonsense and cover the rest of my surgery and treatment!
Next day: I was out to dinner with Joe Joe at Gramercy Tavern, celebrating the test results with a glass of champagne and I got a call from the surgeon with INCREDIBLY GREAT NEWS....Insurance is going to cover the surgery!!!! OMG! Now I don't have to lose everything that I've ever worked for to save my life.
It really creates perspective. I was so happy that Pookie and Arthur pushed me around the Whole Foods that night in the shopping cart.
Now you're caught up til today: Christmas. Sitting at Mom's house, in front of the fireplace, Peanut curled up inside my sweater. Thought it'd be a good time to start my first blog ever.
It was an immediate and natural decision for me to share my diagnosis with people in my life. I don't want to keep it a secret. For me, to keep it a secret, or make it the 'c' word, gives it power that it doesn't deserve. At the same time to deny that it colors my world would be impossible. So, I'm sharing ~for me, and for those of you who are interested in this crazy journey for whatever reason.
I know what it's like to be on the other side of the gurney...when you are the healthy one and it gets awkward or uncomfortable. Do you mention it? Do they want their privacy? Will it upset them if you talk about it? Please, if you are still reading this, and you know me even a little bit, please just be normal. we can't ignore the gorilla, but I don't want to dwell on it. Please call me as much or as little as you normally would. I'm signing up for as much love and light as you lovely creatures want to send in my direction ;)
Future update posts will be more brief, I guess...but this one give you the nuttiness in the nutty nutshell.
I'm back in LA on the 1st. Surgery is on the 7th. I'll be laid up for a while (under Mom's care - bless her) SO....if you are in town the first week of January and the weather cooperates, I'd like to play as much beach volleyball as possible! lemme know!
I hope that you have had a truly joyous holiday with your family - whatever form your family is in. Wishing you bundles of love under the tree.
love love love
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