Wednesday 25 January 2017

Reality is a bitch

But who can retrieve hope out of a 10 foot deep pit toilet? Who, you ask?

Me, that's who.

January is almost over. I'm fairly sure I'll survive the rest of it. I have almost finished the things I absolutely have to finish. I am still standing; I have most of my wits; and I feel strong: albeit a little smeared by the shit of circumstance.

Ah, let me back up a bit.

We had our follow up appointment with Dr. Cotter. I always have a sinking feeling anticipating these appointments, and it didn't help that I had to drive across the city in winter weather. I felt crazier trying to figure out the parking machine at the clinic than I ever felt while taking any fertility drugs. I narrowly restrained myself from cursing a blue streak at it and the bystanders behind me for the insult of existing and making demands on my stressed mind.

That was my mood going in, but I was quite prepared thanks to the detailed charts and notes I kept during my Clomid cycles, and the fact that I blogged about the matter and received some helpful comments.

Dr. Cotter chose, uncharacteristically, to open with a positive: "You ovulated several times!" (with reference to the first three Clomid cycles). She followed this with "We received some new information from the latest semen analysis." I allowed myself to briefly fantasize that this new information was good, even though I knew it wasn't.

Mr. Turtle's last SA (September 2016) showed a drop in numbers from 17 million (2013) to 1 million. That moves him from the "moderate" male factor infertility category to "severe."

Dr. Cotter was quick to add that "men's sperm counts go up and down like the temperature in [Western prairie-steppe city that has huge temperature fluctuations due to the Chinook phenomenon]. "Men can go from zero to millions in a few days," she elaborated, and said that this was true for men of all ages, including men in their 20s.

"With those sort of numbers," she continued, we would usually go to IVF, but we know you didn't produce any eggs on [very high dose of follicle stimulating hormone]. And you were three years younger then, so....[pause]."

"It does seem unlikely that we'd get a better result now," I mutter at Dr. Cotter and the indifferent universe.

"So the question is...." [pause to lean forward and make intense eye contact] "How aggressive do you want to go?"

There is another pause while some part of me registers that the last time I heard about aggressive treatment, it had to do with my dad's esophageal cancer. Also that at the moment I feel not very aggressive at all, but maybe this is one of those times that you fake it till you make it.

"Would you consider donor egg? Would you consider donor sperm?"

I stare at Mr. Turtle. "It's not off the table. But we haven't talked about it lately." Mr. Turtle adds, "Yes, we'd definitely have to have more conversations about that." He then steered the conversation back to his SA and recurrent lymphedema as a possible reason for it.  Mr. Turtle has Crohn's disease and is immuno-compromised because of the drugs he takes to manage it. Anytime he is fighting an infection, he gets a lot of swelling in the genital area which increases body heat, probably killing sperm or causing them to not develop properly.  We talked about how at the time we conceived AJ, Mr. Turtle had been doing lymphatic massage for drainage. He didn't think that at the time it made any difference, but maybe it had? Also his perception was that he was in worse health overall at that time than at present - but still managed to conceive a child, which is interesting. Dr. Cotter looked up his medical records on her computer, corroborating what he was saying with what his other doctors had observed.

Her recommendation after this discussion was to repeat the sperm analysis twice more, to see if there are any changes or if the low numbers seen in September continue. In between the analyses, Mr. Turtle can try what he can to reduce the lymphedema. He also has follow up with other doctors to get more opinions. So that's all good.

After we talked about that, I felt like I should bring the conversation back to my issues, although for a change, I was (sort of) the receiver of good news. I asked:

Assuming Mr. Turtle's sperm counts improve, would Dr. Cotter suggest trying Clomid again or look at something different?
Dr. Cotter reiterated that she feels Clomid is the logical treatment, because I did ovulate on it, it has been used for a many decades, and because "we know that Clomid at low doses works for women at the end of their reproductive lives." She seems quite positive on this point. She also implied that considering the one anovulatory cycle, she might increase the dose. She also talked about Femara/Letrazole as a possibility, but noted that it works in "a very different way" and she could not judge if it would be better than Clomid or not.

I asked if there was an advantage to going off Clomid for a while before trying it again, and she said yes, you need to take a break every four cycles. If we do try Clomid again, I will want to ask more questions, such as the short luteal phase on the ovulatory cycles and in what circumstances she would consider additional things such as a trigger shot/progesterone supplementation. But that conversation can wait till we know more about what's going on with the sperm and if improvement is possible.

I asked if there were any risks to taking DHEA over an extended period of time, and she said not that we know of, and agreed to give me a prescription for it for another few months. It shouldn't do any harm and it might do some good.

And then because I felt I should, I asked what were the options for donor egg should we choose to go that route.

Most of the donor egg information I already knewfrom asking the same questions three years ago. Two options:  fresh cycle with an (unpaid) egg donor, 38 or younger. Since we don't want to recruit a donor this isn't likely an option for us. Option 2, we can buy frozen eggs in batches of 6 from a US egg bank. The cost is $10 000 plus $1000 shipping cost, plus the cost of the IVF cycle. The donor eggs would need ICSI and assisted hatching as the freezing process makes the eggshells tough. (She actually said eggshells).  As Dr. Cotter was talking, I couldn't help thinking of all the things that could go wrong during this process.  Another wrinkle: Dr. Cotter said the egg banks might refuse to sell eggs to a couple with a low sperm count, because they would worry about it affecting their pregnancy rates and that's how they market themselves.

And what about donor sperm? Dr. Cotter had floated the idea of donor sperm with Clomid and/or an IUI as an option.

Dr. Cotter told us that "donor sperm is expensive" although the numbers she gave were in the hundreds of dollars, not thousands which is less expensive than eggs, at least. She then went off on a tangent about how sperm costs more or less depending on the race of the donor: Caucasian sperm is the cheapest, and Black/Hispanic sperm goes up in price with Asian sperm being the most expensive. Asians have low sperm counts and sperm donation is not a cultural norm. "There is literally one Asian donor in Canada and he is in high demand."  I don't know why she thought all these details were necessary since we are obviously white and not likely to seek out a different race donor but what do I know. She told us how sperm and eggs are flown all over the world and that is normal. At the end of this informative disclosure all I could manage was "It's an interesting world you work in."  "Oh yes, very interesting,"Dr. Cotter said breezily, as though she had quite enjoyed discussing professional business with us. Maybe this is her way of testing if people are really serious about "aggressive" treatment.

It's an interesting word, aggressive. A google search of "aggressive treatment" brings up this definition : "Aggressive care describes a particular approach to a life-threatening illness or condition. A patient receiving aggressive care will receive the benefit of every medication, technology, tool and trick that doctors can devise to treat his or her illness."  "Aggressive" usually (to me) has a negative meaning, such as a person who wants to pick a fight and threatens with words or actions.

But in the context of illness, aggression sounds kind of positive: Imagine soldiers of medicine fearlessly fighting the enemy disease! If you are aggressive, you must really be doing something. No more talk, all action! It seems cowardly to say, well shucks, maybe I don't feel like being aggressive. It rather reminds me of times in my life (mostly as a child) when well-meaning people kept telling me to be more assertive, maybe even more aggressive, with the stated or unstated implication being, if I didn't, the aggressive people were going to win or get all the good stuff. By the time I was in my 20s, I felt I had proven that I could have a good life without being aggressive, i.e. something I wasn't.  But the notion they planted still lingers in my thoughts: if I'm not aggressive, I'm not really serious about what I want, and I won't get it.

The thing is, at least with regards to infertility, I see aggression as illogical. Aggression implies an opponent. But who or what is my opponent here? My own body. So aggression means two things: I'm fighting my own body, or, I'm asking doctors to fight my body (while I passively watch? how is that a thing?). Neither possibility makes a whole lot of sense to me. Maybe the key piece here is self-image: I see myself/body as fundamentally good and beautiful. My body is not so much my property (I didn't ask for it and I don't get to keep it) as a sacred trust. To harm it or hate it feels deeply wrong and always has. In so far as "aggression" means harm or hatred, I can't go there. At all.

But you might say, it's just a word. Why not focus on the treatment options, not the words.  Well, because I think words actually do mean something. Words tell us truths about how we and others think, if we listen attentively. The words we use are not coincidental or accidental. They have histories. The histories tell the story of real things and real people. Real bodies. When Dr. Cotter calls DE/sperm IVF "aggressive treatment," she's telling a real story with real world consequences.

And whether I have another child or not, all my life I'll be telling my story. More than that, I'll be telling my child(ren) their story. What kind of a story do I want to tell?

That's where my thoughts are at. Not whether I can conceive naturally or whether DE IVF or some other treatment will "work." Those are valid questions, but I won't be able to answer them until I try, and when I get the answer, it may well be too late to do something differently, and thus the answer itself will be useless. So truthfully, none of those questions or their hypothetical answers will actually determine our course. The one that will is, What kind of a story do we....want to tell?

So back to retrieving hope.

I'm actually feeling quite good. January is almost done. The days are getting longer. My daughter is beautiful and my husband walks with me on this path. We don't have to go back to The Fertility Clinic for another four months (after the second SA) and I'm quite happy about that. We can cycle unassisted. Or not. But we probably will.  We can talk about DE IVF and the other options Dr. Cotter floated. Talk is good.

Basically, I'm not being aggressive. And I feel just fine about that.


  1. Interesting thought process about the lymphedema! I hope you see an improvement in a few months time!

    1. Yes, that would be encouraging. It was nice to see Mr. Turtle taking an active role in the conversation and using his analysis skills to help us understand our options. :-) We really do have a crap deal overall, physically speaking, but at least there are possibilities for both of us, and with a lot of luck.....

  2. Your last few paragraphs about agression and body image got me. One gift I got out of this whole experience was making piece with my body. For years I warred with it, angry that it didnt look a certain way. With infertility, the hatred intensified. Hence agressiveness didn't bother me as I was okay with punishing my body. Initially. David and Dee helped bring me around to the idea that infertility was a cue that my body was hurting too. Hence why treatment had to be holistic (mind and body) and healthy boundaries needed to be set.

    I also agree with you about the attitude around he word aggressive. It feels like the boundaries are being removed (or there is permission to remove the boundaries). Which is scary because as you pointed out, your RE's relationship with your body is for a finite period of time. You live within it for as long as you are on this planet.

    Lots of thoughts....

    Glad Mr. Turtle advocated for your both. I think he's spot on with his observations. May teach your RE a thing or two, if she's truly interested.

    1. I like David and Dee's perspective a lot. Infertility is a cue that your body is hurting and treatment must be holistic, body and mind. That is a humane approach.

      I appreciate that you introduced the concept of boundaries into the discussion. It's been difficult for me to understand how my feelings about further fertility treatments have changed since AJ was born. Before she was born I was open to a lot of options (and still am intellectually), but now I find I have many more doubts and questions. I think it has to do with protecting myself but also with protecting my family as it is now: not just our physical bodies and finances but also our collective identity and origin stories and myths. That boundary wasn't there before; when it was only Mr. Turtle and I we were a lot more flexible. Now we have redefined who we are through our narrative of what happened in the past and how AJ came to us. Third party reproduction feels like it's adding an alien element. Honestly, I think I'm perceiving it as a threat. Dr. Cotter with her talk about "aggressive treatments" and the economics of donor gametes brought those feelings to the surface (for which I am actually grateful, for now I can try to understand them better).

      Thanks for the active listening and commenting!

  3. That is a lot to think about! The story of your family, your narrative, is your story and it will be beautiful however it evolves. Something I have thought about from time to time is my own family's narrative-not as regards family building and also not this next generation, but the previous ones, and how the stories change slightly through each individual's memory as they are handed down. I am only taking a small part from my grandparents, a slightly larger one from my parents, adding my own story to it and passing it on, and pieces will become lost as Bubs and Bubs2 forget/omit and add their own.

    It must be difficult, working through the feels around it, but hopefully things will be much more clear as you understand those feels.

    Good luck to you and Mr. Turtle, hope his lyphedema improves and you see some good numbers in 4 months time!

    Only one Asian sperm donor in Canada?? I love it! I wonder if he drives the prices up by making only a donation or two a year or if donating is a hobby. I like to think hobby.

    1. That's a good point that the family stories change with each generation and that I don't have ultimate control over it no matter what I do. In some earlier discussions I explored the idea that doing fertility treatments, especially with donor materials feels like exerting a greater level of control over destiny and so I feel a greater sense of responsibility for what might happen. Also I don't get to use the reasoning that "this is our only chance to have a child" because we have a child. The catch is we don't have a child because of our choices or even because of science or technology. Ok, that's an exaggeration: obviously our choices and actions had something to do with it. But we can't say it was THIS particular thing we did that led to AJs existence. We can't say why she here. I mean that both in the mundane sense of "how did two severely infertile people conceive" and the mind blowing "why are any of us here" sense. AJ is a blessing. She has also destabilized all my thought processes since the moment I was aware of her existence. The ground has never really stopped shaking. Shaky shake shake shake. Thanks for your perspective and good humour. Obviously I get very intense about this stuff. And yes, it's hard not to speculate about that one lonely sperm donor. I'll keep my mental images of that to myself. :-)

  4. You should only take DHEA if your DHEA-S levels are lower. Otherwise for folks with DOR it can tip the testerostone balance and make the situation much worse. I don't understand how doctors say there is no research to say it is harmful which doesn't automatically mean it is safe. It just hasn't been discovered yet

    1. Well, she did say there are no harmful effects "that we know know of." It doesn't mean there definitely aren't any. I had been taking DHEA before AJ was conceived (not immediately before though)) so it's one of the things that MIGHT have helped. I'll look into what you wrote about. The frustrating thing about this situation is I just don't KNOW. I basically pick a direction and go with it till I can see sonethi g better.

  5. Oh, man. I strongly dislike the word aggressive and find it isn't applicable to DOR very often because what works for some people is so different than what works for others (at least from what I have learned from the Internet and various blogs, obviously an accurate source of information - I have read a lot of studies, too, I suppose). Anyway... I like the idea of taking some time to think about what you all what, to get your husband's health back, and perhaps for something to just fall into place. You and I both know that you just *never* know. Although I have to admit that hope feels very much like a double-edged sword to me right now.

    I, too, take comfort in my beautiful, funny, smart daughter and my husband who I love dearly. In the midst of life being incredibly challenging and unfair (not that it is ever "fair"), it can be so, so good.

    1. If I was to come up with an alternate term for "aggressive treatment" for fertility, especially something like donor gametes, I think I'd call it "bypass treatment" or something like that. Awkward phrasing but what I'm getting at at is that the at this (hypothetical) point our infertility is no longer actually being treated. Nobody is trying to fix it anymore. It's being bypassed. That seems less threatening than escalating levels of aggression. But do I really get to resolve this by changing the terminology to suit myself? Meh. Maybe it's that simple. Or maybe not. Because involving other people's bodies and DNA, spending thousands of dollars, complicating the genetics in our family DOES feel kind of aggressive. I don't mean ANY of the steps are inherently wrong or aggressive. The thought and motivation feel aggressive. As in......I have this goal and the means and nothing will stop me!!! That's aggressive, no? Thanks for you your comments. All my commenters are SO NICE.

    2. Also I posted this before reading your post with your I missed the significance of your "hope is a double edged sword" comment. I'm heartbroken for what you are going through. Thanks even more for commenting and sharing your thoughts even now. All I got for you is a ton of compassion and respect.

    3. Okay, I love the idea of bypass treatment! Frankly, when you are going through what we are going through, you can call it whatever you want. I always talk about my "fertility" rather than "infertility" and I *HATE* the term "Premature Ovarian Failure." I know they have changed it to POI, but I still find it incredibly offensive -- like I need a reminder my ovaries are failing me? No, I do not.

      Call it what you want and whatever will help you to get through the next steps, whatever you all decide they will be. I look forward to sharing the journey with you, even if it is one I wish we were both not on.

  6. Thinking of you as you wade through everything in front of you. I really liked what you had to say about the word "aggressive" in relation to your body -- one thing I feel I really lost in my journey was a sense of my body as my friend. I felt it just failed me over and over again despite all I put it through. Interesting about the sperm donors... I can tell you that I was SHOCKED at how expensive donor sperm was and how some men can be in high demand (ours was Caucasian but was touted as "a favorite" which I had mixed feelings about). For us it cost $900 plus the $250 subscription to information to pick a donor in order to ship the vial (ONE vial) from California to NY. I feel like there might have been shipping on top of the $900. It was far more than I remembered seeing at the beginning of the journey, and considering how little inconvenience a man is put through versus a woman for donor eggs, it seemed like so much!

    It really is true that SAs can vary widely. our counts were always so low, but then one IUI actually had us in "good prognosis" counts and we couldn't figure out why.

    I hope Mr. Turtle's lymphedema improves, and your natural cycles go well. I hope you find the answers you seek, whatever they may be. I wish you so much peace in this difficult space.

    1. Yeah. I'm mostly okay with the *idea* of using donor material. I'm even OK with paying or people being paid...if it's their choice and their health is not harmed. But when I hear what's actually involved, it causes rather different emotions. Another detail Dr. Cotter had shared in a previous meeting was about the logistics of egg donors. Apparently a lot of them are young women donating eggs to pay their university fees. The availability of donors varies depending on the academic year. That made me rather uncomfortable too, and going through secondary infertility rather than primary infertility I find I'm more inclined to pay attention to that discomfort (more aware of my privilege, maybe). On one hand I assume/hope that each donor has made the decision to donate without coercion, and in a sort of a way I'm helping by buying the product, and even if I don't choose to buy donor eggs, it's not going to stop other people from doing so. The system will continue. But on the other hand I was a student for many years, and if I try to imagine what would motivate me to donate eggs to pay for school....well it would not have been my first choice for finances, that's for sure. I would have had to be quite desperate: no resources, no job. Is someone in that situation truly choosing freely? How would I feel talking about that with my child. Those sort of thoughts go through my head. The idea of "favourites" and half siblings here there and everywhere is kind of off putting too. Oh well. Much to think about. It is interesting how much more I'm thinking of these things compared to three years ago. Honestly, all I could think this time in 2014 was "how would I feel if I was pregnant right now with a baby made from donor gametes?" Answer: I would feel great! and that was that.

  7. Did your Dr mention having your husband take any supplements? My husband had a sperm issue (I think it was motility?) and the dr recommended that he take CoQ10 and a multivitamin. I myself was on a litany of supplements as well- CoQ10, DHEA, prenatal, Vitamin D, etc (there were about 10 in total). I don't miss taking them.

    1. Ha yes I'm on most of those. No, she hasn't mentioned that. Mr. Turtle's mom (who works in traditional Chinese medicine) has suggested various things to him. He's partly on board. I think he has medication fatigue already taking so many already. Also there is the concern with how supplements will interact with his chronic condition and the medications he already takes. But it's another good thing to ask, depending what the tests show. Mr. Turtle is trying to improve his overall health: I'm proud of him.