I didn't ever think that I would have to be one of the women who even thinks about going through it. Of course I don't think that there are many who do, unless perhaps they have mothers or close friends who have gone through it. I bring this up not because I am infertile, but because I will be, soon.
I thought about this in passing a few months ago when it was suggested that I might have to move from my current immunosupressive therapy, azathioprine, to a stronger drug, Cytoxan. Cytoxan is a cancer drug that's used off-label to treat lupus and scleroderma, among other autoimmune diseases. It will suppress my immune system, but it will also give me some of the side effects that cancer patients receive while undergoing infertility treatment, one of those being a loss of fertility.
I hadn't given this one a whole lot of thought when it came up the first time, but on my last visit to the rheumatologist, my CPRN suggested in no uncertain terms that I should be looking into the cryopreservation of my eggs or, if possible, some embryos, before undergoing cyclophosphamide treatment. I had a "holy shit" moment. It had been the last thing I'd been thinking going into the appointment and something like that can't really help but slap you in the face. Certainly, I know that there is a very slim chance of me being able to carry a pregnancy because of the toll that it would take on my heart, but except for that passing thought a few months ago, I hadn't really thought about the idea that when I did want to get (a surrogate) pregnant, there might be complications. In fact, considering the uncertainty of a lupus pregnancy with my clotting disorder, I was actually thinking that a surrogate pregnancy might be easier than doing it the old-fashioned way; I wouldn't have to stop taking my meds; I wouldn't have to deal with the extra toll on my already aching body; I wouldn't have to worry about a post-partum flare. It was sounding like it might be a pretty good option for me, still does, but now I have to worry about whether I will have any eggs to contribute when the time comes.
So I was a bit freaked out when I came home after my doctors appointment Friday. And as I am prone to do, I spent the afternoon scouring the internet, soaking up everything that I could about cryopreservation, IVF, and cyclophosphamide treatment and its effects on fertility. The first thing that I discovered is that my health insurance does not cover any type of artificial reproductive techniques. Crap. I don't know if there is anyway around that because my fertility is actually in jeopardy because of a medical condition and its treatment, but somehow I doubt that they'll give me the money, or give me the money before I start treatment, which I'm sure can be put off for a little while, but it can't be put off indefinitely. So no money. That didn't stop my research though, I mean there's always the "what ifs" and I like to at least know my options so that I can take advantage of anything that might be a possibility.
Being a still-unmarried woman, my first thought was that I would preserve some of my eggs and then at some later date, when BF and I are ready to have a child, we would unfreeze and fertilize them. Turns out it's not quite that simple when it comes to eggs. The technology is still experimental and far from proven. There is a good chance that if I had my eggs frozen, we wouldn't have any viable eggs left after being unfrozen. The other negative to the egg freezing process is that they have had greater success unfreezing the eggs if they were frozen in tissue, as in ovarian tissue, as in invasive surgery that would remove part of my ovary. Even if I didn't have issues the prospect of being sliced open and having part of my ovary removed, PH patients don't do well under anesthesia, it can be really dangerous, and because of my anticoagulant therapy, any surgery requires at least a four day hospital stay, not top on my list of things to do. But as there is no insurance money to make me choosy, I did look into the possibilities for this option and it turns out that there are several clinical trials for people undergoing chemo and others that would make this possible for me. Essentially, you let them take out one of your ovaries and they keep twenty percent to experiment on and work to develop technology that will advance their ability to freeze eggs in tissue, unfreeze them, and then mature the eggs artificially. The other eighty percent is frozen and preserved for your later use (which really depends on whether or not the trials work and they refine the technology sucessfully). Not a bad option for someone with no money and no insurance coverage. It is definitely still on the list, just not at the top.
Another option that I found was to take the drug Lupron along with the Cytoxan. Apparently the chemo destroys the eggs once they mature, some doctors think that if you take Lupron and essentially shut down your ovaries during treatment then no eggs will mature and the effects on fertility will be minimal. From what I've read, however, this is still a seriously debatable treatment and the results are pretty uncertain. It's possible that the cells in my ovaries that mature the eggs willl be destroyed, leaving me with lots of unmature, useless eggs. It's possible that the chemo will throw me into an early menopause. It's possible that the Lupron will accelerate that process. Or it's possible that it will work and I'll still be fertile on the other side of treatment (assuming, of course, that I'm fertile now). I don't really like uncertainty, so that one went way down to the bottom of the list, right above "Do Nothing." The one positive to the Lupron therapy is that because it's not officially an artificial reproductive technology, I could probably get my insurance to cover it. I hate the money end of this thing.
The last option I explored was freezing embryos. BF and I would go through the whole IVF process except implantation, we'd just freeze as many embryos as we could in a cycle. Lots of issues with this one. Lots of complicated issues. First, there's the "what if we split up" question. Who's embryos would they be? Would he even want them? Would he let me have them? Would I even want them? We're both pro-choicers, he's an athiest, I'm a...well I'm not clear on that at this point, so we'll say that I'm agnostic, and we're both come very analytical, science people. Neither of us has a problem with embryonic stem cell research, but that being said, neither of us wants to make a bunch of embryos only to destroy them all later. But we'll figure those issues out. We could always donate them to an infertile couple or for research. The anticoagulant - hospital stay deal might still be a problem. And the drugs that I would have to take to suppress and then stimulate my ovaries might not be compatible with some of the medications that I need to take.
The real problem would be the price. IVF is not cheap and for a couple such as ourselves, where one party is not bringing in any income whatsoever and we're both already carrying lots and lots of student loans and assorted other debt. Hopefully my SSDI will come through very soon and help to alleviate this situation, but there still won't be thousands of dollars left for in vitro. I came across a little ray of hope at the end of my search on Friday. While exploring my options to just go see and discuss the situation with a reproductive endocrinologist I found a very unique program through the University of Pennsylvania's Fertility Care department called Fertility Hope and according to their website, they provide financial assistance for cancer patients who are about to undergo fertility-compromising chemotherapy. They don't pay for anything directly, but instead they arrange for hospitals and drug companies to donate their services to allow those who could end up sterile still have a chance to have children once they're well. They sounded great and except for cancer I meet all of their qualifications for someone who would be eligible for assistance. Unfortunately, there are a lot of programs out there that are aimed at people with a specific disease, but if you have something similar, even with the same treatment, you're out of luck. Pulmonary hypertension, lupus, and scleroderma are among those diseases. Have you seen all of those commercials on TV for new rheumatoid arthritis drugs? Seen AIDS, MS, or cyctic fibrosis benefits and fundraisers? There are more people in this country with lupus than with any one of those diseases, but it's not exciting, it's not novel, it's not in your face, and there's nothing brand new that they're doing to fix it (of course with more money comes new treatments, but that a whole post altogether). Anyway, I decided that it couldn't hurt to put my case before them and see if they made exceptions to the "cancer" part of their qualifications. I spent a long, draining hour writing out my story and how much I wanted and needed their help, though I would understand if they couldn't help me. I went into the weekend with a little grain of hope, but I really didn't expect to get help. What can I say? I try not to build things up when I don't think that the odds are in my favor. I live with disappointment nearly everyday and it sucks, I didn't need to start thinking that I was going to get this, only to be crushed.
But last night, just before retiring the laptop and going to bed I got an email from their program director. They can help people with other diseases who are going to be taking chemotherapy. She was very compassionate and said she hoped that they could help me. I hit the ceiling. I went to bed floating on a cloud. I haven't been happier since...well, I don't know when I've been happier, especially recently.
So it's certainly not a sure thing yet. There are still some costs associated with the treatments, they don't cover everything, and we'll have to pay a $400 a year storage fee. There's also still my complicated health situation and IVF might not be something that my doctors will even let me undergo. It's not even a sure thing that I need the Cytoxan treatments yet, we still have some tests to run and some decisions to make, but if I do, that little ray of hope I had on Friday has become a full-blown sun shower.