Thursday 8 August 2013

Charting a Course

Today we had our 3rd meeting with Dr. Cotter at The Fertility Clinic. I think it went well.  Slowly the pieces seem to be coming together, at least in the version of the puzzle that exists in this moment in time.

We received most of the latest test results for me.
Thyroid: Normal. They detected some antibodies which mean that at some point I had a mild case of thyroiditis, but nothing looks amiss now.
Genetic tests: I am not a mosaic.  Hurrah. Didn't even know what that was until today.
We are still waiting to hear if I am a Fragile  X carrier. This is the piece of the puzzle that we need to have before setting a direction.

Prior to the meeting, Mr. Turtle and I went over the information we have so far and mapped out a plan, and wrote down questions.  Since meetings at The Fertility Clinic take weeks to schedule, and go by so quickly, I wanted to make sure that we had a  clear sense of what we wanted to communicate and what we wanted to learn. Even more importantly, as a couple we need to be working together and understand what we are getting into. This was something I committed to when we got the first diagnosis, and luckily Mr. Turtle believes in communication  and cooperation, too. One of the first blogs I ever read was CGD's Adventures in Infertility Land.  Sadly, in addition to their unsuccessful quest to have a baby, CGD and her husband also ended up divorced. Although CGD's blog is no longer available, she did share her experience on Episode 18 of Bitter Infertiles, and I think everyone who is pursuing fertility treatments should listen to it. In fact, if you haven't, go ahead and do so right now.

We also both read Chapter 3, "Planning Your Itinerary" in  Melissa Ford's book Navigating the Land of IF (another resource I highly recommend). In the chapter Mel (She of the Stirrup Queens) goes over eight factors influencing decisions about infertility:

  • Cost
  • Certainty of reaching parenthood
  • Sureness of leaving infertility
  • Possibility of a genetic link
  • Possibility of a biological link
  • Amount of control over prenatal health
  • Average speed of resolving infertility
  • importance of maternal age
Mel suggests each partner independently rank these factors and then compare notes. That is what we did. We had the same top two:
  • Certainty of reaching parenthood
  • Amount of control over prenatal health
We were slightly different for number 3; Mr. Turtle put down Possibility of a Genetic Link, and I put down Importance of  Maternal Age. But when you think about it those show similar priorities because if I am to  be genetically related, my age does matter because of the POF.

So, this is what we put together. 


Plan A
Fresh IVF cycle, our own gametes. (Assuming I do not carry Fragile X.)
We  would like to try to have a genetically related biological child.  We realize that due to the DOR/POF particularly, the odds are slanted against us. I am not going to produce  a lot of eggs and there is a chance I won't produce any. IVF is a game of diminishing returns in the best of cases, and we are not the best of cases. (If there even is such a thing as "the best case" when talking about infertiles.) However, that doesn't mean I won't produce eggs and we won't get an embryo and hopefully a pregnancy and baby. Neither of us is happy to walk away without at least trying. Fresh IVF is a gamble, and we will be sad if it doesn't work, but we can't draw a line under this option without at least giving it a try.

I will go on DHEA and Co-Enzyme Q10 for 3 months before starting the cycle. It will be Flare Protocol.  SO LONG FAREWELL to my un-medicated existence untouched by doctors with prescription pads. It was nice while it lasted. One thing's for sure, there's no cosmic reward for living your life "naturally." (What, me bitter? OK, maybe just a little.)

Reassess Plan A either: A) after one unsuccessful cycle  or B) after diagnosis of Fragile X

Plan B
IVF cycle with donor eggs
Should my own gametes be formally declared a hopeless case, then we will look at donor eggs. In Canada it is illegal to buy or sell gametes, so no paying an egg donor for her services. Doctors are also not allowed to treat anyone who is not Canadian, so no bringing a donor from another country. That means we can either A) find our own volunteer Canadian donor ("Sister, can you spare some eggs?") or B) use a donor in the USA or vitrified oocyctes from an American egg bank  ("you can buy and sell anything in the States," sez Dr. Cotter). Not sure which route we would end up taking here, but I would think the USA donor/egg bank is more likely. Plan B needs more research and is still a bit surreal, admittedly.

Because I was curious about it, I asked about how an IUI cycle with donor sperm would compare to a donor egg IVF cycle. Dr. Cotter clearly recommended donor egg IVF over IUI with donor sperm, which  she gave no more than a 5-10% chance of success, due to my dodgy ovulation. "You're at the end of your reproductive life, so it's hard to tell what your ovaries are going to do." Not one to mince words, eh.

We also asked about embryo adoption, and Dr. Cotter said, yes, there is a  list. You need to have done one cycle of IVF before being eligible for the waitlist.

Reassess Plan B when: Not sure; we'd make that decision when we get to Plan B.

Plan C
We didn't discuss this yet, but Plan C comes into place whenever we are done with unsuccessful fertility treatments, which for me, would be in 2, max 3 years. I could change my mind, of course, but I'm pretty sure I don't have it in me to do treatment after treatment, year after year. One way or another, infertility will be resolved.

We also asked Dr. Cotter for her views on naturopathy. I have started acupuncture treatments, as I previously described, and Mr. Turtle has  been seeing a lymphatic drainage specialist.  It is taking a lot of trial and error for him to find a way of reducing the edema of the scrotum, but he is optimistic about the most recent technique. Of course, we don't know if reducing the swelling will improve sperm quality, but it seems like a logical assumption and worth pursuing.  And if it only helps Mr. Turtle be more comfortable and less self-conscious, it will have been worth it.  Mr. Turtle also plans to talk to Dr. Q to see if she can suggest anything else for him.

Dr. Cotter said there is no evidence of acupuncture making any difference in achieving pregnancy, though there is some ongoing research into that. She did say that it helps fertility patients "live through what we do to them." So, acupuncture is OK.  Lifestyle or dietary modifications are also OK, "as long as it is not excessive." I asked her about herbal remedies in general (nothing specific has been proposed to me) and she was adamantly against the whole idea. She said that there is more money spent on natural remedies in the USA than on prescription drugs, and that there is no regulation or accountability in the industry. So basically, when you take a supplement, you have no idea what you are taking or what effect it will  have on you or on a fetus. She said (with some heat) that that is a completely unfair thing to do to a baby ("the effect on you will be short lived, but the child will live with it for 80 years.")

Final thoughts?
I actually left this meeting feeling fairly confident and calm. Mr. Turtle also thought it went well. The tone was overall more optimistic than the last meeting. We felt less like deer in the headlights.  Mr. Turtle observed that Dr. Cotter was using language like "when we get you pregnant" as opposed to before when she was being extremely cautious. I was very focused on  getting my questions answered and I felt that I did.

But of course we still don't have the piece about the Fragile X. I expected to  have all the info today but I guess the labs are not especially speedy and it just doesn't all come together perfectly. I would really like to commit to a plan, whatever it is. Because of the DOR/POF, I'm being told to waste no time, but on the other hand it always feels like we're waiting for something, and we can't just make a decision about what we are going to actually do.  I don't mind a few months of hormone supplements, acupuncture, and pondering the meaning of  life as long as I know we are heading somewhere.

It's funny how our goals have adjusted as a  result of IF. When we first started TTC, the goal was simple: A baby!  Achievable within about a year, with luck.

Then we learned about the MFI,  and the goal was: Do an IVF/ICSI cycle. Hopefully get pregnant, but no promises, eh.

Then we learned about the DOR/POF, and the goal is, make enough eggs! Maybe. But no promises.

Notice how "baby" seems to be getting farther and farther away. In fact I think I don't even connect this whole process to a baby a lot of the time.  I can just conceive of getting pregnant.  But baby seems to exist now in some alternate universe that's made of very different matter than what I trip over every day.

But at least, we can almost see a path forward. Ask and learn and decide and one step ahead of the other. Don't get too attached to one course though, you don't know when the wind will change or if the kraken  will eat your boat. But still. Maybe a path.

20 comments:

  1. So many people are arrogant about divorce (It could never happen to me!) so they don't bother trying to prevent it. I'm glad you're doing what it takes to protect and preserve your marriage.

    These are all sound plans and I have hope for you. Good luck with the test results!

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    1. Thanks! Hoping for the best and grateful for the support.

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  2. Wow! How great that you have a path. It sounds like you got a lot of information and answers from your Dr. A lot of Doctors seem to be coming around to the idea of accupuncture. I used to work in a health store, so I am biased, but I love the idea of taking natural remedies to ensure the body is as healthy as possible. I love to take green smoothies and I did a cleanse after I was done with IVF.

    I am wishing the absolute best for you!

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    1. Yes, everyone comes at these issues from their own perspective. We just want to get the best advice we can. I imagine some "herbal remedies" don't exactly classify as drugs and would be safe, but I don't know where the line is. So most likely we'll follow Dr. Cotter's advice and play it safe.
      Thanks for the good wishes; I hope I gt to share more good news soon.

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  3. How great dies it feel to have a plan ...even if that plan is currently in flux. I'm so glad your doctor seems hopeful. That has always made me feel better about the whole thing. Hoping for some clear-cut direction soon.

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    1. Yes, a plan makes me feel a little less helpless, and layers of plans feel like a bit of emotional armour. Better to do the thinking before faced with a crisis, as much as possible. But also trying to remember the happy stories, like yours, so we have the strength to keep going.

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  4. Love this post! Every part of it. I love a plan and it sounds like you have realistic plans in place and understand that they may unravel. Im rooting for you!

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    1. Thanks. I really appreciate that you read the blog. Sadly it's impossible to ignore the fact that we may not get the best case scenario but I try to remember that there always is a way forward somewhere. Remembering that helps me to stay calm and grounded, mostly, and take things one step at a time.

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  5. That's interesting what your Dr. said about DS + IUI. Being DOR/POF + MFI, it's something that I've considered, but not brought up with my Dr. So it's good to know that it's not really an option. And I like what you said about the baby getting farther and farther away. It's all about enough eggs and enough sperm; that's hard enough for us that it's hard to see past it. Wishing you all the best!

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    1. Thanks for the note and the bridge back to your blog. Looks like we have a few things in common. I am looking forward to following your story. Yes, with these kind of diagnoses it is one hurdle at a time. Maybe that's not a bad thing; sometimes it helps to have emotional distance, and that's somewhat easier when talking eggs and sperm than when talking babies.

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  6. sounds like you guys are doing a great job communicating and ranking your priorities. we did the same after my POF diagnosis. We tried injections for one cycle because we wanted to knowthat we had tried everything. I am glad we tried it because I live without regret.

    I also agree with the feeling that it i hard to connect what we are doing and going trhough with teh goal of a baby - I think about pregnancy all teh time but rarely remember that that means we would get a BABY!!!

    Keep us updated on your plan and keep up the awesome communication!

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  7. Will do, thanks! Yeah, sometimes I wonder how I'll actually cope with a real pregnancy or baby because all the emotional and intellectual energy and time that I could spend on preparing for parenthood is going into dealing with IF. Sometimes I do read articles on parenting just for the heck of it, but I feel like I'm reading about Martians or something. Although I do like to read the parenting stories of infertiles. It's easier to relate to.

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  8. So glad you had a good doctor visit! And that's great that you've come up with a game plan. Thanks so much for sharing the link to the podcast on infertility and divorce. I was actually just talking to L the other day about how I feel like so many couples we know probably would not still be together if they hadn't been able to have children.

    I mean, how often do you hear about people "staying together for the kids"? I really do think the ability to have babies easily without much planning, or even "by accident," acts as a kind of glue to hold people together when they would otherwise have parted ways had the circumstances been different. As infertiles, we don't have that "glue," the thing that keeps us humming along on a typical life path. We are forced to stop and really examine our relationship with our spouse, to put our love to the test. As CGD said in the podcast, infertility acts as a "magnifying glass" that makes the tiny hairline fractures that exist in any relationship appear huge and sometimes insurmountable.

    It's a scary thing to be on such a bumpy ride, but I do believe in the end it's a good thing to have to really examine our priorities. I was watching Inventing the Abbotts the other day, which I know is a corny movie, but there was a line that stood out to me. One of the characters said, "In this life, there are some people who you love if all the circumstances are right. And then there are others who you love no matter what. I've always thought that the 'no matter what' kind of love is the best kind." Infertility makes us really test whether or not we have the "no matter what" kind of love.

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    1. What a great quote about love! Thank you for sharing. I agree. That podcast is so thought provoking; it's well worth the hour of listening. Infertility is a life crisis and I think it's important to think carefully about what sort of person/family you are going to be during the crisis and what kind of person/family you want to be at the end of it, wherever that is. Thank you again for the support and the thoughtful comment.

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  9. It sounds like in Canada there are a lot of restrictions of what you can and cannot do. It's good to have a tentative plan. One thing I learned from my first IVF cycle is that anything could happen so I am taking it one day at a time and one cycle at a time. So you just try and reassess. I didn't know about Mel's book. It sounds interesting and I'll look into it. Sorry for all the waiting you have to do. Isn't it true that we're always told not to wait b/c of our DOR but there are always some tests to run and results to wait for. I hope you get the results soon!

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  10. Thanks! Yeah, it's a balance between having some idea where you're going but also being able to take things one at a time. Different challenges need a different kind of energy, for sure. Canada does seem to have more restrictions, many are recent. There are also laws around how many embryos are put back during IVF.

    I really want these results; I might be making calls if no hear back by next week!

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  11. Happy to hear that you and your partner are communicating well, planning for different scenarios and on the same page regarding fertility treatment. It's true that infertility can be very stressful for a marriage, but it is also common for marriages to be strained by kids. Infertility alone won't break a marriage. I agree with what the lady said in the podcast that if there are already problems with the relationship, having a baby won't make all the problems go away.

    And I think what your doctor said makes a lot of sense. I agree with her about the herbal remedies.

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    1. Very true Ariel. We don't get to pick our challenges, only how to respond to them. I usually try to avoid "what if" scenarios because really, nobody knows what would have really happened in a different scenario. For example, I am sometimes inclined to regret that mr turtle and I put off ttc until a year after marriage. Maybe if we'd known earlier we would have been "ahead" in dealing with IF, I would have more eggs left, blah blah. But then I think: maybe it is far better that we had that year to strengthen our marriage and not have to deal with this stress right away. Maybe it is far better that we decided to start ttc when we felt ready as a family, not due to stress or pressure. Who knows?

      Thank you for reading and for your insights.

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  12. Having a plan is so important. We didn't really set out with one (other than no more than 3 IVFs because we don't want to go bankrupt and drag this out forever) but we kind of developed one along the way. It's also super important to be talking about Plan B, C, D early so that you know you're on the same page with your partner when/if things fail. I've also looked briefly into donor embryos in Canada, and it seems like something that we don't really do here. But I like the idea in theory even more than donor egg, since you're cutting out yet one more step (fertilization) where things could go wrong. Sure, there's no genetic link to either parent, but you still get to experience pregnancy and early infanthood, unlike most regular adoptions. Let me know if you find out more, as it again seems like something where you'd have to go to the US. Canada is so far behind on this stuff, and our laws don't help.

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    1. Thanks, yes a plan is so important. Although gh you can't get too attached to any plan. We didn't discuss embryo adoption much but Dr. Cotter said that yes the clinic does do that. I'm not sure how far reaching the program is. One of the options on the IVF contract is donating unused embryos to other couples so maybe it is just something that happens within the clinic's clientele. I'll let you know if I find out more.

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