I’m excited to announce that I’ve been asked to be a regular blogger for the Philadelphia Inquirer’s new “Diagnosis: Cancer” blog. My first post appeared on Monday.
Please check out this important post from Sue Friedman on Progress in Hereditary Cancer Treatment Research.
Today was busy. I began by announcing my BC on Facebook. I went back and forth about whether or not to do this, mostly because it just seemed tacky. But, I really do want to educate people about BRCA and HBOC, and Facebook is an easy way to do it. Already many of my friends have posted words of support, but more importantly they’ve shared the information on their own Facebook profiles, along with a link to FORCE and my fundraising page (which has amazingly reached 60% of my goal in only a week!).
I spent the rest of the morning drafting an advanced directive (DNR). What a sad thing to do. I cried the whole time I was in the shower this morning just thinking about what it should say. I printed a draft to bring to my PCP appt later in the afternoon.
To reward myself for a miserable morning, I headed out pajama shopping. Much more success this morning at a different Target (after stops at TJ Max and Marshall’s). I got three pairs of button down pjs that were more money than I wanted to spend, but I also got a fuzzy lined robe for $6! I keep imagining I’m going to be freezing in the hospital (probably because we’re in the middle of some kind of Arctic freeze around here). Unfortunately, I brought them home and they don’t fit. I was really wasn’t sure what size to get. I mean, I’m going to be a bit smaller, but not so much smaller. And I will be swollen, so I won’t want any clothes that are going to be too tight. So I guessed at a size that looked about right, and I guessed wrong. They will go back tomorrow and the quest will continue.
While out shopping, I spoke to a reporter about my story. Several years ago, I was interviewed for a local newspaper about my BRCA status: here is the story. When I was diagnosed with BC earlier in the month, I contacted the reporter to see if she’d be willing to do a follow-up piece. I want to spread the word about early detection and this is a good way to do it. She was very interested, and in fact was already working on a piece about a panel on HBOC that will be happening next week at the synagogue where my son goes to school (I was planning to attend, but I’ll probably still be in bed at that point). Anyway, the reporter called me while I was out shopping. It felt good to be able to give her lots of information about BRCA and I hope the article helps to spread the word around our primarily Jewish community.
Later in the afternoon, I met with my PCP to have my pre-op paperwork signed. While in the waiting room, I looked at pictures of post DIEP procedures to get an idea of what I might look like. I am a small framed person, but I am quite overweight. So I know I’m not going to have a completely flat belly when this is over. I’ll also still have my wide ass and flabby arms to deal with. But I found this picture and I think it accurately portrays what I look like now, along with what I might look like later.
Because I have body dysmorphic disorder, it’s hard for me to tell if this accurately represents what I look like (I’d just post pictures of myself, but I know my husband would prefer I not put my breasts on the internet, and I respect that). I showed this picture to my PCP, and she said that it mostly does look like my body (although my current breasts are symmetrical, unlike this faceless woman above). My breasts should be smaller than hers too when the surgery is over – I’ve asked to go from a DD to a C cup.
My PCP also says I’m good to go for surgery. She also mentioned that she had breast cancer three years ago, and she had implant reconstruction. She told me about her nipple tattooing and asked if I wanted to see. I had to admit, I did! The tattoos were really realistic looking. She did have to go to Baltimore to get them – apparently, she met with Dr Gimbel too, and he said no one around here does a great job. Guess I’ll deal with that down the line. I also asked her to look at my Advanced Directive (DNR) draft, and she helped me to clarify some of the medical information I included that didn’t really make sense.
So, a busy day. Four more days to get ready. I’m also going to start listening to the pre-surgery guided imagery mp3s I downloaded, as recommended by my therapist. While a major part of me says I need to go-go-go for the next few days and get lots done, another part says I need to spend some time relaxing and focusing my energy on keeping my body well and preparing for healing.
I sent this email to my friends and family just now. I will upload the details of my appointment this morning at a later time – right now, my son is napping so I’m going to also!
I wanted to let you know that I have a date for my surgery – March 11. Although it turns out there’s a lot more DCIS present than my doctor originally thought, she says it’s still non-invasive and I shouldn’t need any treatment after the surgery.
After meeting with several doctors, I’ve chosen a breast surgeon and a plastic surgeon who I really like, and I’m confident in their abilities. I will be having a double mastectomy, during which she’ll examine the tissue more closely along with a lymph node – this is just to verify that it hasn’t spread. At the same time, I’ll be having DIEP flap reconstruction – in English, that means a boob job and a tummy tuck – I’m actually kind of excited about it!
It’s a long surgery (10-12 hours) along with a long and difficult recovery, but I’m up for the challenge and will be completely relieved to know that all of the cancer will be gone for good.
The Chair of my department and HR have been very helpful – I will likely be taking an 8-week leave from work, and most or possibly all of it will be paid.
I’m trying to use this ‘occasion’ for advocacy and to make others aware of the need for early detection, particularly those who should be screened for hereditary breast and ovarian cancer (and Ashkenazi Jews specifically). Inspired by my new friend, Robin, who is the co-leader of the local chapter of FORCE, I’ve started a fundraising page. I hope you’ll take a look. As motivation for myself to get as healthy as possible before the surgery, I will donate $10 to the fund every time I eat cake or fried food between now and then (how embarrassing will it be when I end up the largest contributor?).
Thanks for your support so far.
I went to the HBOC clinic at the Hillman Cancer Center on November 2. At this point, I don’t remember most of it. All I know is, I waited almost 2 hours to be seen, and it was only when I told the receptionist that I was leaving that she remembered to tell the doctor I was there! This process was already not off to a great start. I met with two doctors: Kristin Zorn and Rachel Jankowitz. Neither of them were particularly warm nor fuzzy. Zorn recommended a complete hysterectomy instead of an oophorectomy (a word that I cannot spell correctly on the first or second try). She feels that the less endometrial cells that remain, the better. The effects are all the same and it’s not a much more significant surgery, so why not? If anyone reading this knows differently, please do let me know! I was pretty convinced – I will probably have her do the surgery since she’s done it a zillion times and is the most highly recommended gynecological oncologist in the city. I also met with a genetic counselor: Darcy Thull. I left with a list of things to do:
- Email scan of BRCA results to Darcy Thull
- Call Rhode Island Hospital genetic counseling to have records sent to Darcy
- Call to schedule consults with Kandace McGuire and Gretchen Ahrendt, breast surgeons recommended by Jankowitz
- Call to schedule mammogram for December
- Call to schedule MRI for May (be sure to call the clinic a month before the appt to get pre-authorization.
When I left with this list, my main thought was, “Thank god I am an organized, literate person.” I went there alone, I took my own notes, and I got most of the things on this list done within a few days. But what happens to people who aren’t as savvy about these things? It made me think there should be an HBOC concierge or something – one person who keeps track of this whole thing throughout, helps you make appointments, find the right people, get to the right places. I find it overwhelming – I can only imagine what it must be like for people who aren’t as educated or don’t have the same sort of support I do.