Monday, May 09, 2011

to freeze or not to freeze

I have one significant fear: jumping into water.

I don't know the genesis of this fear or when it started. It wasn't there when I was young because I remember jumping (not diving) off the high dive at the pool and loving the rush of adrenaline as I climbed up the ladder.

But something changed and when I was on a boat for my first snorkeling trip at the Great Barrier Reef, I panicked when I was told to jump off the boat. Maybe it was the open ocean that was so startling but I remember standing at the edge of the boat after everyone else had jumped in talking myself into it.

Eventually I did it and was fine. Better than fine. I was snorkeling at the Great Barrier Reef! It was amazing!

Later that same year I went to Lake Powell with some friends and somehow got talked into going cliff jumping. I should rephrase that. I doubt anyone had to talk me into hiking up to the top of that cliff which in my memory was about 20 feet high. One friend opted out from the beginning and no one tried to convince her to jump off a cliff. But I guess I've always been one of those would have to respond in the affirmative to the old question of "if all your friends are jumping off a cliff would you do it?" But only if it looked like fun and was kind of daring.

Once at the top of the steep red cliff peering over the ege at the water so far below I had second thoughts.  My stomach twisted up into itself and I think my friends questioned our advenutre as well. We all stood there offering the first jump to each other. I believe there were four of us - Michele, her boyfriend at the time (although maybe they weren't dating yet) and his 14-year old brother. I remember the brother because he was the one that just ran and jumped off that cliff leaving the rest of us to feel lame for being scared.

Eventually Michele and I screwed up the courage to do it. I don't remember which of us jumped first or if we ran and jumped off that cliff together. The part I remember is the falling, falling, falling. 

My eyes were squeezed shut and I was holding my nose and pointing my toes prepared for impact.

The fall took forever and I remember wondering where the water was.

I must have looked down to check when that thought floated through my head because as soon as I thought it, I smacked the water.

I swam to the surface with my face stinging and Michele asked me where the blood was coming from. Turns out I had smacked my face on the water and torn that little flap of skin that holds your lip to your gums.

All weekend I have had that sensation of falling through the air. Friday I was at the top of a cliff not really sure how I ended up there and by the time I finished a particularly long appointment at a fertility clinic I felt like I had jumped off the edge and am now falling through space, trying not to repeat my mistake of looking down for the water for fear of being smacked in the face again.

One of the many, many things that never crossed my mind prior to being diagnosed with breast cancer a mere 11 days ago is what efforts I would make to preserve my fertility.

As a 35-year old single woman I have definitely thought about my fertility, even worried about it. The topic comes up often among women my age whether they are trying to have a baby, worried they may not be able to have a baby if they decide to later or reassuring one another about how many women they know who are able to have children in their late 30s and into their early 40s. There are also the statistics that are thrown at us in the media about women's eggs shriveling up the older they get. I vividly recall a ridiculous anecdote in which a man my aunt was potentially being lined up with told her something to the effect that her eggs were too old for him to date her. Even for a first date. Absurd but true.

In many ways I thought I was at peace with the idea that a) I might never get married and b) I may never have children. I was mostly okay with these two things because they were still very contingent and accepting that they might never happen but could still potentially happen allows me to be more content with where I am in my life now rather than yearning pointlessly for something I cannot necessarily control.

However, cancer changed some things.

At my first appointment with the breast surgeon all of ten days and a liftime ago one of the big points that stuck out to me as my friend and I walked out of his office was that because my cancer is estrogen and progesterine positive, I would be given a hormone supressing drug for five years after my treatment that would put me in a menopausal state. In five years I will be closing in on 41.

Sitting in another waiting room that morning my friend reassured me that I could just freeze some eggs. This is New York afterall and it was not a foreign concept by any means. In fact, I remember having a conversation a few years ago wherein I was joking about how one would bring up eggs on ice to a potential partner: "oh, right, I may be nearing 40 but no worries, I planned ahead and had my eggs iced just for this occasion."

As I moved through the process of calling friends and family I was given offers to carry a child for me and one friend even offered up her husband's sperm if needed. She pointed out how cute her kids are in support. Like with all of this overwhelming volume if information, the jokes helped neutralize it all.

And last week when I met with my oncologist for the first time, a few of my 52 questions were dedicated to fertility preservation. Since I have a hormone receptive cancer, any fertility treatments hold two risks: 1) delay in treatment and 2) potential for fueling the growth of my tumor. While my first instinct is to kill this thing inside me immediately, I greatly appreciated her telling me that if she was in my position, she would do everything she could to preserve her fertility.

Ultimately, I agree. Nothing is guaranteed but I have to do everything I can now so I don't regret it later.

She explained that we wouldn't delay anything. If fertility treatment took more than a few weeks then she advised me to get surgery first and then chemotherapy. She gave me a couple of names of reproductive endocrinologists and by noon on Wednesday I had an appointment for Friday afternoon.

I spent Thursday reading everything I could find about fertility preservation for cancer patients online. There isn't a lot out there. I also endured what I fear will be the first of many ridiculous conversations with my insurance company wherein the girl (she sounded very young) on the other end of the phone left me waiting for an extended amount of time while she looked up "fertility preservation" only to return to me and report that she couldn't find anything on "infertility preservation." I tried to suppress laughter as I explained that infertility preservation really isn't a thing - unless you count vasectomies and hysterectomies.

On Thursday I also started my period.

Now normally I wouldn't tell you something like that. Even I have some limits on what I will share on the internet but this turned out to be extremely fortuitous because the fertility treatments are started on the third day of your period.

I spent Friday morning with a genetic counselor and then went to the fertility clinic for a 1 pm appointment. My friend went with me and out of all of the doctor appointments I've been through in the past few weeks this is the one where I needed someone the most. We spent some time with the doctor where he re-explained everything I had been reading about and went into more detail and basically complicated my decision process.

Way back on Monday the idea of freezing my eggs was so overwhelming, I finally broke down and cried. Cancer is just not as daunting as the idea of prematurely losing my fertility. If I even have any to begin with! I'm older, there is a history of infertility in my family and honestly, I may never meet someone with whom I want to have a child so all of this time and money and delay could be for nothing.

By Friday I was comfortable with my new vocabulary which now includes oocyte cryopreservation (egg freezing). However, in my studies and discussions with doctors I learned that eggs don't freeze as well as embryos since they contain more water and are more suseptible to ice crystals aka freezer burn (my term). So now the question is not necessarily whether I am going to move forward with the freezing process but what will I freeze? Egg or embryo?

After a grueling four and a half hours of information overload at the fertility clinic that included an ultrasound confirming that yes, I do indeed have eggs in there and a mini class with a nurse to teach me how to give myself injections and a tearful goodbye when my friend had to leave after two hours, I was done. I was out on the sidewalk on the Upper East Side clutching a folder for the egg option and a folder for the embryo option and a bag full of sample meds. Dazed I made my way to the pharmacy where the doctor had sent my prescription for all of the drugs I would need to start taking the next day.

I felt so very fragile sitting on that bench as people went about their seemingly normal routines around me. I was in a free fall.

When my name was finally called I barely blinked at the total of $999. I was warned of the cost at the clinic and knew insurance wouldn't cover it and with everything else moving so fast I didn't feel there was much I could do about it anyway. But what makes me angry is thinking about those women who find themselves in my position who do not have the means to swipe their card and pay $999 for drugs to protect their ability to have children once cancer was out of the way. This is not something one should have to worry about on top of cancer.

And $999 is only a drop in the bucket of the costs associated with this process. On Friday I was handed an application for the Lance Armstrong Live Strong Foundation grant to cover part of the treatment. I have not even looked into that because there is no reason I should qualify for such a grant. I am lucky enough to have saved a significant amount of money and have a well paying job that allows me to cover the expenses. I don't have to make this decision based on finances. But what of those who do? I cannot even imagine. I spent this morning on the phone with the clinic finance department repeating the costs which I was told on Friday but have been lost in the blur of information. Tomorrow I have to pay another $10,000+ for the cycle of treatment. Then another $1,000 each year for storage. How do other women do this?

To add to the stress and bizarre nature of the whole thing, I spent Saturday night reviewing sperm bank websites. That's right, you can order up some sperm right here on the internet. I find these websites eerily similar to dating websites but without the mocked up photos and the ALL CAPS writing. One can run searches by hair color, eye color, ethnicity, religion (which seems odd to me because that isn't necessarily something a baby is born with, right?), height and weight. Some sites list baffling celebrity look-alike photos and others include baby photos if you pay an extra fee. The staff writes a little essay impression of the donor and one site has recordings of the donor answering some ridiculous question like "what is your favorite holiday."

I am one of the few single women I know who has no interest in online dating so shopping for a sperm donor as a potential biological father to a potential child I may or may not be able to or want to have in five years . . . so strange. It doesn't help that I flat out do not have a "type" and no, I am not going to date this donor but I cannot get away from the idea that I should be attracted to the donor because those are the characteristics I would want for my hypothetical future children, right?

After deciding browsing sperm banks was a bit too much for me, on Saturday evening I started the injections. Why not add a nice big dose of hormones to the process? I was so nervous I was going to do it wrong and so worried it would hurt that I ended up pinching the inch of skin on my stomach for the injection so tightly that I didn't even feel the needle when I poked it in! I did it! And it didn't hurt. Success.

My heart goes out to women who have to do this multiple times in an effort to conceive. It is an overwhelming, expensive and daunting process with absolutely no guarantees. I won't get any guarantees either and won't know for years if my efforts will allow me to have a child or if I will ever have to break the news to a potential suitor that - oh, don't worry about that cancer thing, I put some eggs on ice for later. Or possibly, hey, no worries, I chose a dark haired-dark-eyed-6'2"-Mormon-Irish-Guatemalan  sperm donor who values family and studied physics back in 2011 and froze some embryos. We're all good.


lemoniepants said...

um, this is when you call your dorky friend who is a nerd and works all weekend and say- hey jerk. be a friend and talk to me about this.

good hell, what a weight to shoulder all at once. i am so sorry.

lizzie said...

ugh. i never could even imagine. so sorry. wish i could be there.

Christy said...

Hi, I'm a friend of Tiff's. Thanks for opening my eyes. I never realized all of the things that a diagnosis like this brings along with it.

I am so impressed by your ability to think of others while going through the process. AMAZING!

I know you don't know me but you'll certainly be in my prayers.

Emily said...

You are so strong and so amazing. I don't envy you the decisions you're having to make all at once. Hugs from Florida.

michele said...

oh the cliff jumping memories! and what a tough decision! I think you are making a good decision though, you're not going to regret freezing eggos, but you may regret it if you don't.

oh and don't worry about sperm, there's always some floating around.

Tiffany said...

I'm sorry, I can't get over the thought of a Mormon-Irish-Guatemalan who studied physics.

So proud of you. (And your future son Murphy Allejandro.)

Annie said...

i've started typing a dozen times. then i look and re-read what i wrote and it sounds really stupid. i may not get most of what you are going through, but i get growing your ovaries from the size of walnuts to the size of oranges in a matter of days. sucks. you are incredible.

Soul-Fusion said...

Thank you Annie, I've gained a new appreciation for what women have to go through when they say they are undergoing fertility treatments.

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