Tuesday, July 21, 2015

Hope is a Battlefield

I'm going to start with a link to an article about the first woman who's given birth using a transplanted uterus, because that's what prompted me to come back to this blog. My first thought was that it was kind of strange, mixing and matching body parts to come up with a viable way to bear children. Of course, my second thought was, "I wonder if this is good news for me."

The thing that stands out, no matter what else I thought and felt while reading the article, is that the donated uterus came from a woman who was post-menopausal.

I'm post-menopausal. My body isn't producing the hormones that it did when I was fertile. It means I had hot flashes that woke me up in the night and drove me absolutely crazy. It means that my doctors recommended hormone replacement therapy (HRT), because being as young as I am, there are health risks associated with being post-menopausal. If I have a baby it will be a purely medical process, start to finish.

There are many women, even a number that I know personally, who used some kind of hormone therapy or in-vitro fertilization (IVF) in order to get pregnant and were super happy with the results. Or were devastatingly disappointed. I don't know anyone who has gone through chemo and radiation and then tried those things, but the prognosis for fertility is grim.

Getting pregnant at all is highly unlikely. We've just got 5 frozen eggs, so the most likely scenario is that we try once and it fails. Pregnancy with IVF takes 20 eggs, on average. If we get so lucky, the chance of a miscarriage is very high, especially late term. The baby would be born prematurely because my uterus is not as stretchy as it was before pelvic radiation, despite all efforts to shield my uterus during treatment. We would have to live close to our doctor and the hospital. In the case of a late term miscarriage, it would have to be done by c-section.

We talked a lot about this before I started treatment, and that's why we've got five frozen eggs in a cryogenic freezer somewhere in Berlin. But we also knew that facing cancer and treatment at the same time as facing the possibility of not having children was too much. We needed to know that we could deal with the questions around having children at a later time. We needed a reason to hope.

Regardless of the baby-making, HRT is a good idea. It's been over two years since I last had my period. It's been weird. I don't think about it often, because like most women I had my period once every four weeks, not constantly. But I felt different. Every once in a while I'd get moody or unreasonably frustrated or prone to tears and I'd think, "oh, maybe I'm getting back to normal!"

Joshua thinks HRT has brought me back to normal. Since I've started taking hormones, he's noticed that I'm more on my game. I notice things that I was either ignoring or oblivious to for the past couple of years. In not so nice terms, I'm sweating the small stuff once again. When I nit pick at him he says, 'there's my Ramona!' and laughs. Could be I was completely zoomed out during and after treatment, as a coping mechanism. Could be my hormone levels were having an effect. Most likely it's a combination of the two.

Joshua and I are both afraid of pregnancy. We're scared that it'll be temporary, that my body won't be able to hold a baby for long enough. We both believe we shouldn't make decisions from a place of fear, but this is a tough one. Medical procedures to pregnancy, potential of failure, potential of more emotional and physical damage. We could just keep living the way we have been and let go of the idea of having a baby that is part me and part Joshua.

What I know is that I don't need to have a baby to feel complete or satisfied. Before all this cancer business, I would not have considered IVF or fertility treatments - we would have tried and if it didn't work we would have mourned and moved on. Of course, we never thought we'd have a problem. Joshua and I are mourning the loss of this experience: being parents of children made up of our genes, that look like us and inherit random features from us to form a unique but familiar combination. We both wanted that experience and we are facing the likelihood that it won't happen. I know and love people who would have been devastated to be in this position. They would have tried everything. If they didn't try everything, they would regret not having pushed a little farther until they knew there was simply no possibility.

Beyond hope and fear and uncertainty is my need to have some choice in all this. Getting cancer and having treatment is completely disruptive in every way. Life feels out of control and all decisions are made based on a very present threat and a bit of uncertain future. We've been out of control. I lost all control over my body. I took super poisonous medications. I was cut up, permanently physically changed with permanent reminders - not by choice, but by necessity.

At this stage, being able to make a decision, have any choice at all, is like rain in a time of drought. Knowing the risks to me, to a baby, and to Joshua, as we would suffer through a very uncomfortable and stressful pregnancy, I want to choose rather than see what happens if we try harder. Having a child is a very selfish and personal wish, which is not a criticism. But if we push so hard for what we want and then we have a child that we knew would have health problems from the beginning, that probably wouldn't even make it... It sounds crazy to me and to Joshua. I know that's not how everyone would feel, but it's how we feel. Pregnancy always comes with risks, but this is an outstanding situation in which we would be risking a baby's life, comfort, and happiness, my life, and further emotional and physical trauma. How badly do we want to have a baby? Not that badly.

I wanted to write about hope. That article made me hopeful again, for a while. It made me think that if a post-menopausal uterus could be transplanted into another woman's body and then carry a baby to term, maybe my uterus, with the same kind of medical support, could do the same. It's not the same, but it gave me hope. And while I have hope, I'm afraid.

My doctor says that his patients all believe in miracles otherwise they wouldn't be there and they wouldn't have experienced miracles for themselves. (He doesn't say this to brag, but to make the point that we don't know unless we try. He is not pressuring us to make the decision one way or another, and he doesn't tell us that it's an overwhelmingly bad idea to try to have a baby.) But when he said we would aim for 7 months of pregnancy and I rhetorically asked, 'So, it would basically be a miracle if I had a baby?' his response was, 'Yes, but we have miracles here all the time.'

We may still have children. We've always talked about adoption, even before all this. But that's a different conversation and we're still a couple of years away from being eligible to adopt. Having had cancer, I'm at a higher risk of having it again until 5 years out. Then I'm just as likely as anyone else to be diagnosed. So we will start to learn what it would take. The thought of adopting is exciting. We want to care for a child that would otherwise be without a family, and to build a family and home through choice and an attitude of generosity. But that's another blog post.

There are a couple of other maybes. Maybe we could travel to a country where surrogacy is legal, pay a fortune, and ask someone else to have a baby for us. Maybe a uterus transplant program will start nearby and we'll decide that a bunch of surgeries and medical pregnancy sound like a good idea after all. Ugh. Grieving it out and moving on sounds more appealing, and that is telling. Also telling is that with all the potential outcomes of IVF, the one that sounds most reasonable is for it not to work, for us to no longer have any more options. I think we know what the right choice is for us.

Hope has sustained us for a long time, but we're starting to feel the strain of being hopeful about something so heavy. I'm tirelessly optimistic in most situations, but not foolishly hopeful when I know the odds. If I'd started my period again, if I was growing my own endometrium, if my body wasn't sending very clear 'too-late-for-babies' messages, maybe we'd feel differently.

We've pondered and measured and cried and tested out how it feels to tell other people what we've been thinking and then cried with those people. It's getting easier. The tears don't come as readily. Moving on doesn't feel impossible and we are enjoying the things we can be grateful for - to the absolute fullest. Like all the people we love and who love us and have supported us through all this crazy. Like each other and the life we have together.


  1. Hi there - I am 33 and have just started treatment for stage 3 primary vaginal cancer. Your blog has been such a help to me, i couldn't find any resources at all that described treatment and the fear and experience of being so young and having this diagnosis. I read your blog start to finish in the week I had my transposition surgery, it was such a source of help. I really hope you are doing well and I thank you so very much for sharing your treatment and recovery. I hope the best of everything, especially health to you, as you move forward in remission. I truly hope my story goes the same way too.

    1. Oh I'm so glad my blog was helpful to you - although I'm so sorry that you're in this shitty, shitty situation. I am doing well these days, thank you. One of the main reasons I wrote the blog was because I found nothing online about vaginal cancer when I was trying to make sense of my diagnosis. Please be in touch via email at ramona.marks at gmail.com if you'd like. Thank you for writing. I hope you have great nurses with powerful meds and a complete recovery. Just keep going, one day at a time.

  2. Thank you so much Ramona - I so appreciate that and your kind words