To have kids or not to have kids

After reading this article, My Sister, My Surrogate, I’m kind of pissed I don’t have a sister (thanks, mom and dad). The article is about a woman, who, like me, got breast cancer at 26 and, like me, froze embryos at the time. But because her cancer was estrogen-positive, her doctors advised her not to get pregnant. That’s when her awesome sister stepped up and said, “Put your babies in my belly!” What a good sister.

While I’m not ready for them just yet, the subject of babies has been causing me some consternation. Having BRCA sucks, so on one hand I am extremely against passing on my own seed lest my daughter or other future female descendant be blessed with the lucky fate I have been blessed with. But when I think about adoption and donated eggs and other alternate ways of having children, I get sad that I might have children who don’t possess the genes that make the Scharf/Tator family so wonderful. Our quirky senses of humor (yeah, Zooey Deschanel, we were quirky before it was cool), our smarts, our big ears, our singing voices, etc.

Which one will die of breast cancer before age 40?

At this point, I’m leaning very heavily toward the first hand – not passing on my genes. I see procreating as letting the gene win, whereas if I adopt or use a donated egg, this BRCA gene stops with me. No more. Zip. Zilch. Nada.

But I’m still debating. I’d be interested to hear from other readers with BRCA who are pre-childbearing – is passing the gene on something that bothers you?

The Number of…

Days since my double mastectomy: 34 (passed the month mark!)

Days since my reconstruction surgery to remove a large area of dead skin on my left breast: 10

Days since my egg retrieval: 4

Embryos my boyfriend and I now have frozen: 4

I almost never thought this day would come. Two weeks ago, on the night before my revision surgery, I could hardly breathe and hardly sleep. Everything was overwhelming me and making me anxious. First off, I was injecting a lot of hormones into my system as part of the in vitro course to prepare for my egg retrieval. On top of that, I had been so happy with my reconstruction results but it was all going to hell in a handbasket because there was a large area of dead skin on my left breast right under my nipple. The area was so large that my plastic surgeon couldn’t even say with any certainty how she would sew me back up after removing it, or that she would even be able to at all – I could have new scars, a vacuum that would require several days in the hospital, or a flap – and I had no idea what I would come out of the surgery looking like.

Well, it wasn’t that terrible. She was able to remove the skin and sew me back up using the same incision made for my mastectomy. Sure, my left breast is now flat making me lopsided and my nipple is way down at the incision line, requiring a couple more revisions to put it in the right place, but I’m banking on the fact that she’s a good surgeon and I’ll have a good final outcome no matter what.

It still really sucks that I have to deal with this complication, though. So many bloggers post pictures of their beautiful new breasts and I guess I just thought, since I’m young and resilient, things would be easy-peasy. Now that the breast cancer is gone from my body, I have my whole life to look forward to and appearances count. I don’t want to live with a deformed chest – but I’m confident that I won’t have to – even if things don’t return to normal until a year from now.

The news that I was able to bank 4 embryos was extremely exciting. Before the retrieval, I felt very disappointed that my ultrasounds only showed 7 big follicles. A young woman like me should have 20+, so what the hell was my problem? My parents said it was stress, and my doctors also pointed to the fact that BRCA1 seems to be linked to early egg depletion. Great. Not only is my biology trying to kill me with breast and ovarian cancer, it’s also trying to prevent me from having my own children.

We hoped that all the follicles would yield eggs; no such luck. Only 4 eggs were retrieved. But the next day my doctor called and gave the good news: 100% fertilization success. Overcoming great odds, all 4 of my eggs had fertilized! That’s 4 chances at a pregnancy if chemo renders me infertile, which I’m hoping it won’t in the first place. Will and I refer to our embryos as our “frids” (frozen kids), and it’s a little strange to think our possible future offspring is waiting for us in some liquid nitrogen column in West Philadelphia.

Whew. Revision surgery is out of the way. Retrieval is out of the way. Healing is going really well (now). What’s next? Moving back to DC, getting back to work, and starting chemo. I wouldn’t say I’m looking forward to any of it – lazing around with my parents, who are excellent cooks, has been great and chemo will probably suck, but it’s the next step in the process and it means things are moving along as they finally should.

And it was great to come downstairs for breakfast and see this article about the Philadelphia Susan G. Komen Race for the Cure on the front page of the Inquirer.

Forever On Hold

Breast cancer is overwhelming. There are so many issues I’m thinking about right now:

• Insurance.Yesterday I spent an agonizing amount of time on the phone with GWU hospital, my insurance company, and my

  

  This isn't me, but I probably looked like this yesterday.

  oncologist’s office trying to get rid of a $1,000 bill for an MRI that should have been pre-certified. I realize this should be a minor worry in my life right now, especially because we got final path reports and I am THRILLED to have finally confirmed that my cancer was Stage I. But I can’t help feelings of anger that dealing with insurance companies is almost a full-time job and no one can give me straight answers to my questions.

• Fertility (and insurance). I have decided to go ahead with embryo freezing, along with my boyfriend who I lovingly referred to the other day as my “frozen-baby daddy”. The decision was tough – this is a complicated process that requires a lot of doctor visits, drugs, injections, a minor operation, etc, but the decision feels good because it gives me the best probability of having my own children in the future. I didn’t want to go through chemo, become infertile, look back and say “Why the hell didn’t I freeze my eggs?” Still, the process is already causing me stress and it hasn’t even started. I couldn’t get a straight answer from my insurance company as to whether they cover retrieval and IVF, so I’m applying for financial aid from Sharing Hope for Women program. I also just went off my birth control last month as advised by my radiologist, and I’ve been spotting for the past two days, but as it’s been a bajillion years since I’ve had a period while not on birth control, I have no idea if this is a period or not. Why is it important? Because if it is my period, I gotta get a jump on this egg retrieval process ASAP. TOO FAST, TOO FURIOUS.
• The skin on my breasts. There are spots on both my breasts that the plastic surgeon “doesn’t like”. I don’t like it either. One very large spot under my nipple on my left breast was turning black and is now a weird brown, and there was a big blister that popped to the right of it. My incision (which is along the bottom fold of my breast) is also iffy. I am terrified of getting necrosis and needing revision surgeries and, if worse comes to worst, losing my expander. On the right side, the problem isn’t as bad but there are some very small areas of imperfection. Come on, skin, pull through!

Does this swirling tornado of crap that comes along with a breast cancer
diagnosis ever die down? It doesn’t help that today is the first day in a long time that I’ve been alone. Both my parents, who have been amazing and taking care of me since my surgery, are working today. My boyfriend is back in DC, also working. And I am all by my lonesome, with my armageddon-worthy thoughts (well… and my JP drains, which feel like my new best buds). 

Up Next: Fertility

Today was overwhelming.

On the suggestion of my oncologist and the fact that the medical world is unsure of the effects of chemotherapy on fertility, I visited a fertility specialist in Philadelphia. She gave me a lot (A LOT) of information to think about.

So, first off, no one is really sure what the chances are that chemotherapy will cause infertility. A good number (90%) of young women who undergo chemo get back their periods, but having a period doesn’t mean being fertile. Of course, there are several women who do have their own children naturally after chemotherapy, but of course you always have to worry about passing on the BRCA mutation to your child and what that means.

So what’s a woman to do? Freeze her embryos. Freeze her eggs. Use a surrogate egg. Adopt (though, apparently, having a cancer diagnosis in your past makes adopting more difficult, which I did not know before today). The whole process of freezing embryos is extremely involved. I would have to be on medication, inject myself with Lupron, visit a doctor almost daily, and then be put to sleep for a minimally-invasive harvesting session. It is all very expensive, too, costing upwards of $8,000 and even more on top of that to store the frozen embryos until I need or want to use them.

Phew.

Needless to say, this is a lot to think about. Not only am I just a week out from a double mastectomy and freaking out about getting necrosis on my boobs that could cause me to lose skin, now I have to think about paying a ton of money to harvest my own eggs and deal with the possibility that I may never be able to have children on my own. In the words of the brilliant (not) Rebecca Black, “Fun, fun, fun, FUN!” Oh and to add another dimension to this, I have to look to the near future when I’ll most likely have my ovaries removed, so there is a very small window in which I have to get pregnant and have my kids. No pressure, right?

This all needs to sink in for a couple of days before I make a decision, though, as with all decisions I’ve made in the past couple weeks, I feel totally rushed. If I want to do this I have to get on it now, to ensure everything can take place before I start any chemotherapy.

Gah. Throughout the past week I’ve been so happy and upbeat – surgery went well, nodes are negative, I’m comfortable at home with my parents – and all of a sudden I’m again having these feelings of “Why me? I’m way too young to have to deal with this.”

Will it ever end?