Tuesday, May 11, 2010

Topics for your next dinner party.

There are three topics that, when spoken of in polite company, are surefire ways to make everyone feel super awkward:  Cancer, infertility and death. What am I going to do right now? Make you feel awkward (and by association, me feel better) by talking about all three of them. Who ever told you that I was polite, anyhow? Warning: this post may be uncomfortable for some of you, it certainly is for me (I wrote this post three days ago and am just now ready to post). I take no offense if you choose to jump ship now. These are topics that are often relegated to the dark corners of the public lives of cancer patients, if only to make everyone else feel more comfortable. Fuck that. TMI warning light on.

The day I was admitted to the hospital upon first being diagnosed, I was veritably smacked in the face with the statement by my doctor that I may already be unable to ever conceive due to the length of time and degree that I was sick before being treated. In addition, the drugs that have been pummeling my system for 18 months are also known to pummel one's ovaries, causing infertility. This reality hit me harder than the news that I have cancer. (As an aside, moments after delivering the news of my suspected infertility, they wheeled me down for an ultrasound- fucking. awesome.) Not that P and I were or are in any state to bring bouncing baby us's into the world, but we would really like to someday. I am of the completely unbiased opinion that P will be an outstanding father and that I may be an OK mom too. So, this being said, now that we find ourselves preparing for this transplant, we are faced with the reality that if there is any chance that I have any healthy eggs available, we should do something with them now (i.e. put those buggers in deep freeze) because there is a very high likelihood that they will be completely destroyed during pre-transplant chemo and radiation. Thus, yesterday morning (at 7:30 AM, ouch.) we found ourselves sitting in a fertility (or infertility as it were) clinic at Bryn Mawr Hospital.

Being part of the 'cancer world', P and I thought that an oncology office was the saddest place in medicine. Boy, were we wrong. The heavy sadness that permeated the waiting room made my chest feel like it was full of lead. The sheer pain on the faces of those sitting in that waiting room, mostly couples- all clinging to one another as if they were drowning- was enough to make me want to bolt for the door and run sobbing to the car. This feeling stayed with me (and I think P too, though I won't speak for him) as we sat down with our doctor, Dr. Pf.

Dr. Pf's office was like something right out of Grey's Anatomy. In fact, I would venture to say that if he were hanging with the crew at Seattle Grace, his primary role would be to bring DeadHead comic relief to the bunch. Great guy, I like him (which is good because we're trusting him with precious cargo).  At any rate, there we sat, across the large modern desk, discussing the future of our combined genetics.

Going in to this appointment, P and I had researched and discussed at length what we would like to...uh....freeze. The options, of course, being just my DNA or our combined DNA in the form of an embryo. Our conclusion being, based upon all material made available to us by MDA, and our own emotions on the topic, that we would prefer to freeze embryos due to the fragile nature of freezing and thawing eggs (think about it, have you ever put an egg in the freezer? think a more delicate version of THAT).  So, when we got down to the nitty gritty of what we want to do and when with Dr. Pf, we were both stunned to hear that he was hands-down and (not-so-gently) urging us to go with freezing eggs over freezing embryos. Huh? This was even more surprising, to me at least, after he explained that, due to advances in the technology of egg freezing, this option yields roughly the same success rate as freezing embryos. I will be honest here and say that I was getting a touch miffed that he was pushing the egg freezing option over our discussed plan. And he was pushing it. You've met me, I have a hard time changing my mind once it's made up.  This is one of my greatest character flaws.  Anyway, Dr. Pf assured us that no decisions had to be finalized until 'collection day' (gulp.). As much as I like Dr. Pf, there was one thing he said to me that tweeked me ever so slightly. On the topic of what to preserve, he said "If you were my daughter, I would tell you to freeze eggs. But, I'm not 24 and I don't have leukemia". I appreciate what he was saying here, and I don't know if I can exactly pinpoint why his words sat strangely with me. Maybe it was because P and I had already decided what was best for us? Maybe it was because I don't have a relationship with the doctor yet. Not sure. As our conversation progressed, I began to get the distinct impression that there was something he wasn't saying. I'll get to that harsh reality in a moment.

 After Dr. Pf explained the 'stim' (stimulation) and collection processes- which of course may be adversely affected by my constantly low platelet situation (OF COURSE. ugh.)- I was whisked off to have a series of very uncomfortable lady-tests (P was present, poor soul) and P and I both had about a billion vials of blood drawn. Walking in to this appointment, I was under the impression (for whatever denial-ridden reason) that we has some time here. No so. We are literally doing this within the next few days and weeks.  Basically, (TMI LIGHT FLASHING) as soon as I get my period, P has to start giving me shots to boost my fertility. After 10 days, I will undergo a surgical procedure to collect my eggs. At this point they will be fertilized (we hope) and then placed in deep freeze until I am healthy enough and we are both adult enough to deal with the mind fuck of becoming parents (as if cancer wasn't enough of a mind fuck, eh?). All of this was explained in detail by a very kind fertility nurse who took us to a very private area to go over this process.

So, here is the point that things got pretty heavy (yeah, funny, I know). After drawing our blood, discussing the collection process and requesting some ::ahem:: samples, we began the financial and legal discussions. Basically, this is both a very expensive process and a very complicated one for legal reasons (and moral reasons as well depending on your spiritual and political beliefs. Our insurance has very complicated rules regarding their coverage of this process which we do not fully understand. What we do know is that they cover fertility treatment for those my age who have been trying to conceive for a year or more and those who are over the age of 35 who have been trying for 6 months or more. They DO NOT cover 'fertility preservation', which is what we're talking about here. Yeah, you read that correctly. If I were completely healthy and infertile, this would be covered, but since we were delt this shitty SHITTY card, our insurance company has deemed us basically unable or unworthy of being future parents. You know what I would like to say to them? Two words. Not 'Happy Birthday'.  The clinic has graciously extended some very generous financial assistance, which we have tearfully and gratefully accepted to help dissuade the cost (think tens of thousands, again, not 'Happy Birthday' to the insurance company). To them, through the universe, again we say thank you. We have been so blessed to find medical professionals along the way who care and who extend a helping hand to their patients in a country whose 'health care' (HA) system is designed to deny. Thank you. Please feel our thanks.

Alright, deep breath, here is the where we come to the point that Dr. Pf was dancing around. As we were preparing to leave, the nurse handed us a large stack of paperwork to be filled out and returned on the day of collection. One of those forms was the consent form for what should be done with our cells in the event that one or both of us passes before they are used. ::click::. OH. What if I die during the transplant process? What will become of our embryos? P will have ownership of them, however, can you imagine? No, don't. Don't imagine that. I have to imagine that and I don't want to. Dr. Pf was trying to spare us, ahem, P, of the additional pain of having to decide what to do with our embryos in the event that I'm not around to bug him anymore. I get it. We get it. Do I wish Dr. Pf had just come out and said that? Yes. Did it change our decision in the matter? No. But it forced us to have a very candid, tearful and ultimately liberating conversation. Whatever your spiritual beliefs are (and mine are complicated), the idea of having to destroy embryos in the event of a death makes my heart twist out of my chest. Not just for the potential loss of my children, but for P. It's always for P. I'm fighting so hard for him. Because I love him more than anything and he doesn't deserve any of this shit.  I feel guilt deeper than the ocean that he had to sit there and have another conversation about his wife dying. This is so fucked.

You may be wondering why we are bothering to do any of this if there is a chance that my eggs are damaged anyway. Well, the easy answer to this is that, unlike damage from radiation or trauma, they can't tell how damaged my cells are using technology available. The damage may be on a molecular level, something that would not present itself until we were trying to conceive. This being another reason for our hesitation in just freezing eggs. Let's be real, there is a distinctly emotional side to this process. We would feel better if those little suckers were already fertilized and ready to go. Of course, there is no assurance that even those embryos will survive, but the chance, the hope, makes this so worth it. As P so accurately put it, "We've already been dealt a shitty card here. We really don't want to get through this only to find that the eggs didn't work. Let's avoid another shitty card if we can". Well put, dear. 

This is all about hope. The hope that we will get through this, live our lives and bring beautiful blonde haired babies in to the world to be loved like no other children have ever been loved. This is our hope.

So there it is. As much of it as I could pull out of my bursting head. This post was hard to write. I read, saved, re-read, saved, deleted, cried over and then finally wrote again before publishing. I am sorry if it seem disjointed, there are parts of this that I chose to leave out to preserve some modicum of privacy in my marriage. It is my hope that in reading this, you are opened up to an awareness of the taboo wrapped in a taboo that is fertility and death in cancer. Maybe you can relate to this. Maybe not. In any event, if you made it to the end of this post, thank you. For reading and for caring enough about P and I to read about our embryos. Much love.


  1. I know we haven't met, but Thank you for sharing this with us. I am in tears over here. Through all of your pain I can see your hope for your future and that is so refreshing.

    Cancer Sucks. It isn't fair, it fucks up people's lives and wait, did I mention it wasn't fair?

    I am so sorry you are going through this, but I'm so glad that someone gave me your blog. Keep pouring your heart out. I promise you that although you may be doing it for the release... it matters to other people to. It matters to me, to know that I wasn't a raging lunatic when I had all of the same thoughts that you have now and I know if some young woman who was just diagnosed with cancer comes across this she won't feel quite as alone.


  2. Eloquently said, Laura. You are doing good and important work by writing as candidly as you are. You and Phil are both doing good and admirable work in 'preserving your fertility.' May the courage both of you are mustering up be generously rewarded. Love to you both, Chris

  3. This is an incredible (moving, terrible, etc.) post. Sarah and I are thinking about you and hoping for the best for you both.

  4. Wow Laura...you've got this incredibly amazing way with words. I really really hope everything works out for you the way it should. You deserve as many beautiful blonde haired babies as your heart desires (when the time is right of course). I'll keep you & Phil in my thoughts.