I turned 40 last month. You can read about it here, on philly.com’s Diagnosis:Cancer blog.
Last year on this day, I was at Magee Women’s Hospital getting my yearly mammogram. I wasn’t nervous – I’d done this many many times and, because at the time I had just turned 36 years old, I knew I’d be fine. Even though I am BRCA2+, I didn’t expect to even think about cancer until I was at least 40, and by then I knew I’d have had a preventative mastectomy and it would be a moot point.
After the mammogram, I sat in the waiting area while the radiologist determined if I needed to have any more films. When the technician came to get me and said I would be having an ultrasound, my gut kicked into high gear. I knew right then and there that I was in trouble. And I was. After some more films and an ultrasound, the radiologist showed me the areas of micro-calcification in my right breast, and I scheduled a biopsy. There was no doubt in my mind what the biopsy would reveal.
Luckily, it wasn’t as bad as it could have been. The biopsy revealed pre-cancerous cells (DCIS). Nonetheless, as someone who is BRCA+, I knew that my life was about to change in drastic ways.
Since this day last year, I have had a bilateral mastectomy with DIEP reconstruction, a complete hysterectomy with oophorectomy and salpingectomy, and tomorrow I go in for what will hopefully be my last surgery – some nips and tucks to revise the original breast reconstruction. Strangely, my gut is telling me this is a bad move – that I’m pushing things, I’m asking for too much. After two perfect surgeries, why go in for more, especially when it’s solely aesthetic? I feel like there’s too much of a chance for something to go wrong – my biggest fear, like the last two times, is the anesthesia – what if I just don’t wake up? And what if I don’t like the result this time? Do I go in for even more plastic surgery?
Regardless, I do feel like I need some closure with this whole thing. So, I’m going to allow my brain to supersede my gut on this one. As I did before my previous surgeries, I will use today to relax, listen to my pre-surgery guided imagery, and just enjoy the day.
Before I head in for the surgery, I do want to give a message to all (three) of my readers: Anyone can manage his/her own risk of breast/ovarian cancer. Genetic testing, genetic counseling, screening, surgery – whatever you choose, we all have the power to manage our own risk. Doing so will save your life – it saved mine!
I’ve had a lot of therapeutic encounters in the last 24 hours. Yesterday, I went to my first local FORCE meeting. I got in touch with one of the co-organizers, Robin, back in December, and we have met for lunch or coffee a few times. She is really great and helped me so much during the chaos that was most of January. All of the women were, of course, BRCA positive. Some had had cancer, some hadn’t. Many had already had prophylactic surgeries, mostly with implants. Some were considering their surgery options and figuring out how to navigate the local hospital system and meet with the doctors. It was very cathartic to listen to their stories and to tell my own. It was hard to hear that so many of these women had mothers or close relatives who’ve passed away – I am so fortunate that my cousin discovered our mutation a while back; she really did save all of us in my father’s and my generations. While my grandfather’s generation wasn’t so lucky, at least they did not die in vain – their cancer diagnoses taught us all that there was something lurking in our family, and now we’ve been able to stop it (well, some of us sort of met it halfway).
The meeting was educational as well. As I plan for a hysterectomy, probably during my winter break at the end of this year, I was excited to hear a woman talk about her DaVinci surgery done at Magee. I am very interested in that surgery but hadn’t been able to locate anyone doing it at Magee, so this was really helpful to discover. She had her surgery with Dr. Krivak, and I will definitely make an appointment to meet with him soon (not too soon though – my surgery will probably be in December and UPMC seems to have a lot of turnover). Everyone was really open and honest about their experiences, sharing info about doctors and types of surgeries. I think an interesting part of being BRCA positive is that your life really isn’t about cancer – it’s about surgery. When you get your diagnosis, you don’t start educating yourself about cancer. You educate yourself about MRIs, mammograms, hysterectomies, mastectomies, breast surgeons, and plastic surgeons. There’s no need to educate yourself about cancer because your plan is to avoid it! It was nice to meet women who are also somewhat obsessed with surgery! I’m looking forward to going to another meeting soon.
This morning I saw my therapist for the first time since the surgery. I was glad to be able to report to him and thank him for his suggestions of the guided imagery and breathing exercises; both really seemed to work before the surgery (although I acknowledge I had such a small window of time to plan for this surgery, I really had very little time to become anxious!) and after. In our future sessions, he will help me use breathing and tapping exercises to work through some of my post-surgery anti-hospital anxiety.
I’ve also begun researching a massage therapist with expertise in mastectomy patients. This will also be therapeutic – hopefully I can see someone soon to get rid of some of the back pain I’ve been having (although, so far I have been at my desk with a pillow and some tylenol for about three hours and I’m doing much better than previous days). I have calls in to some family friends who get frequent massages, as well as to Dr. Ahrendt’s office to see if they might recommend someone at Magee.
Well, for all the forward steps I’ve been making, I suppose it’s time for a backwards one. And this isn’t too serious (I don’t think). But I did definitely pull something in my incision. It’s on the left side (opposite of the leaking side) – it is very painful and I can’t really walk now – the skin is pulled very tightly and it looks like there are veins sort of popping out – I can feel something hard under there. I mean, I can walk, but I have to hunch over enough so that I’m not pulling on the incision. The skin looks fine – it’s something underneath there that’s pulling. I spent most of the day in bed except for my doctor’s appt. I might have to do that tomorrow too, although I’m hoping to Skype into a meeting at work. I suppose I could actually do that from bed (ah, the miracles of modern technology). I guess like I said, even though it feels like I’m doing nothing, I’m probably doing too much.
The doctor’s appt at the breast surgeon went well. She said everything looks great and that it is completely normal that I have no pain or soreness in my breasts, but that I do have pain and soreness in my abdominal incision – she says that’s what tends to bother most people. In terms of future surveillance – I just go see her once a year for five years, and then they’ll re-evaluate. No mammos or MRIs. She said any tumor that arises would be at the skin level, so I’d definitely feel it or notice some kind of skin change. I guess it will be nice not to have to do the surveillance, although I’ve become somewhat used to it and I’m not quite sold on the idea of not needing it at all. I just find it hard to believe that there’s not some itty bitty cancer cell that didn’t get scraped away in the whole mess. Sad that this surgery was supposed to ease my mind, but it hasn’t. Perhaps it’ll just take some getting used to.
I’m back at the women’s imaging center at Magee for the second time – last time for the mammogram, this time for the biopsy. Like last time, the woman who brought me back to get changed was civil, but not warm. She told me to get undressed from the waist up, put on the gown open in the front, lock my belongings in the locker, take a left down the hall, and then wait in the room on the right. It probably doesn’t’ sound like much to remember, but for some reason it is very hard to hear all of those instructions and put them into action. This time, the gown is much nicer – they must have been out of these nice ones the last time I was here. It’s thick and warm, long and pink with long sleeves, so I’m also not freezing, which is nice. Like last time, I came out of the dressing room and really didn’t know which way to go. I did find the waiting room, eventually. My mom is here with me. She has a zillion vacation/sick days, so I’ve asked her to come with me so that my husband can save his vacation time. And she’s also been here a hundred times for her own doctors, so she knows what’s what.
Ok, so I wrote the above while I was in the waiting room. Here’s what happened when I was computer-less. The nurse came to get me, brought me back into another hallway waiting room (mom was allowed to come). After a few minutes, she called me into a room. She took my bp and temp. Then she verified my identity and began to ask me family history questions. I can’t tell you how sick I am of relaying my family history. So I just said, “Everyone on my father’s side.” She said, “Everyone?” And I said, “Yeah, just write ‘everyone.'” At this point, I can’t see why accuracy with that matters so much. Back out into the hallway.
Then the doctor came to get me. He said he’s going to explain the procedure. I said he didn’t have to – I really didn’t want to know what was going to happen. He said he’d be vague, then proceeded to tell me exactly how many needles (two – one for lidacain, one for the biopsy) and how many times they’d stick me (a few times for the lidacain, then one for the biopsy – but they will move the biopsy needle around in a clockwise fashion and take 12 samples of tissue). This was his idea of vague? I really didn’t need to know all of this. At the end, he says they will put a titanium tag in the spot so they know where it is in the future. I said, “Well, it doesn’t really matter, I’m having a mastectomy anyway.” He was completely confused. When I asked why, he said, “Then why are you having this biopsy?” My thoughts exactly. But, I explained that my doctor doesn’t want any surprises, and that knowing the results will determine when I have the mastectomy – now, or in a few months from now. He said they’d call with results on Thursday or Friday. Back into the hallway.
The nurse comes to get me. She does a quick mammogram – just two poses. Then she helps me get on the biopsy table. I lay down on my stomach, drop my right breast through the hole (which is big enough for my head), and try to get comfortable. Can I have a cushion for my ribs, which are digging into the table, I ask? No – she explains it could affect the positioning. I put my headphones in. I have my head turned toward the wall, so all I can see is the clock, and all I can hear is Adele. I did realize though that not hearing anything was stressing me out, so I turned the volume down. That way I had some soothing music but I was still aware of what was going on. They said they were going to start positioning me and I’d feel pressure. A nurse put her hand on my back and applied gentle pressure – thank god for her – her hand on my back got me through the whole thing. Here’s how it went, or how it seemed like it went.
Positioning: five minutes
Stick of lidacain – much less painful than I thought it would be.
Lots of pressure, pulling, weird feelings inside breast: five minutes
Loud noises and more pressure: a few minutes
The doctor says, “I’m going to count to three and you’re going to hear a loud bang” – ok, one, two three, bang – seems like a staple went into my breast. It didn’t hurt, but it was definitely a bang.
A few more minutes of tugging and pulling – I’m thinking, “this isn’t that bad; I’m getting through this!”
And then, then, after all that time, the doctor says, “Ok, we’re going to start the procedure now.”
Are you kidding? What the hell have you been doing all this time?
Really, the rest of it went rather quickly and didn’t feel any different. When it was done, I was able to lie on my side while the nurse applied pressure to the wound. There was blood, but not so much that I saw. She put small steri-strips on it and then I was taken back to the mammography room for two more poses. Then back into the hallway to wait for the real bandaging.
My mom was relieved to see me. We sat for about ten more minutes, while she told me about the tape they used to bandage her breast when she had a biopsy last year. She said it tore the skin right off and she had a painful open wound for a week. I have the driest skin on earth, so I knew this would happen to me too. The nurse eventually called me in, and when she asked me if I had sensitive skin, I said YES. Please use tape that will be easy to get off. She did the bandage, gave me an ice pack, some directions (basically, don’t get it wet or lift anything heavy for 24 hours), and then I was sent to get dressed.
At home, I really was in no pain. I iced on and off, took some tylenol, and that’s all.
Expenses for today: $5 parking paid by my mom (thanks mom)