Oversharing and Refocusing

Jeff is an oversharer by nature so when we decided to start trying for kids, I had to remind him not to share this with all our friends. To my surprise, he readily agreed. I think at the time, we both assumed it would happen really quickly so it wasn't something he would have to keep to himself for too long. We're both still in our early 30s, we exercise 4-5 times a week, eat healthy most of the time, and my period is relatively regular so we assumed that we were in good shape.

While it's only been 4 months in, I'd be lying if I said we weren't disappointed that we're still very un-pregnant. It's not that the 4 months have been unbearable - it certainly doesn't compare to women who have had to struggle with infertility for much longer periods of time. But it does scare us, as we don't know if this is just the start of a difficult journey that could last much longer than 4 months. No one ever talks about the journey - you only hear about pregnancies when people are safely out of the first trimester. People like me are part of the problem because we don't want to talk about it. That's because if we talk about it, our well-meaning friends take that as a sign to ask for a status update. Isn't it obvious that if I had news, I would tell you when the time is right? In the meantime, the only status updates I have are TMI so please don't ask for them!

It's strange how my worries over SCA3 are now transferred to worries over not being able to have kids. In the grand scheme of things. I know we're in a much better place now than we were 5 months ago - I'd much rather be infertile than have Jeff be afflicted with SCA3. I really haven't taken the time to really be grateful and appreciate for that blessing since we heard the news, because we've been so preoccupied with trying. So from this month forward, we're going to focus on how much God has blessed us in our lives, instead of worrying so much about the children we don't have.

Best bruschetta ever, Cinque Terre, Italy, June 2011

Revisiting the idea of kids

I jumped the gun with getting an OPK last month before we even knew that Jeff did not inherit his mom's SCA3. At the time, I wanted the distraction and thought it would be a good idea to track ovulation, just in case. But now that we know there is no risk of SCA3, sh*t just got real. I think that means next month, we are officially "trying to conceive." Umm...time to gorge on soft cheeses, runny eggs, and sushi this month!

The shift is a bit extreme, since I've spent the last six and a half years believing that pregnancy is the scariest thing that could happen to us. I was terrified of SCA3 taking its toll on Jeff and our kids. Suddenly, I've gone from preventing kids at all costs to hoping that we can have two healthy children. Both of us enjoyed growing up with siblings and continue to have close relationships with them, and we would want the same for our children.

Still, I know that fertility is not something to take for granted, especially now that I'm in my 30s. That's why we still haven't told anyone beyond our closest family members about the results of the SCA3 test. Friends are already constantly asking us if we're expecting. The questions would only multiply tenfold if they knew that SCA3 was no longer a risk factor (our good friends know about the SCA3 risk in Jeff's family).

On another note, is there a reason that so many people believe that it's okay to relentlessly hound couples with questions of their fertility status? I love my friends and they're generally awesome people but their constant questions are driving me crazy! Is it really necessary to ask me if I'm pregnant every 3 weeks? I wish I could share the great news of the SCA3 diagnosis but because they are always so nosy about the status of my womb, I know it will only get worse.

If kids don't happen for us, I know that Jeff and I still have incredibly blessed lives to be  thankful for. I hope we continue to remember that throughout our lives.

Napa Valley, August 2008

A New Day, A New Beginning

Today is one of those days that I know God loves us so immensely and so completely. We are so relieved, so grateful, and still in disbelief at the good news.

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

Palace of Fine Arts, San Francisco, April 2008

Tomorrow...

I can't believe that after 12 years of wondering, agonizing, and planning together, we might finally get the SCA3 test results tomorrow. I say *might* because this process has involved so much waiting, it's hard for me to imagine there won't be further delays. So it's possible that after all my melodramatic pontificating, tomorrow will be just another day. But if it's not, I'm hoping for the best and preparing for worst. So here are a few of our next steps as preparation if things don't go as hoped for:

- Ask the genetic counselor for a retest with another lab to confirm the results.
- Provide the results to the endocrinologist and genetic counselor so that the genetic probe can get set up. I'm still not 100% sure how I feel about IVF but I can at least get the process kicked off while I think about it.
- Adjust our health, life, and long term insurance policies accordingly.
- Start house hunting for a home without stairs for easy accessibility. Ideally, we'd like a ranch style home but that comes at a huge premium in the Bay Area so we'll have to see what we can manage.
- Pray for peace, hope, and understanding to maintain our spiritual grounding and mental sanity.

Jeff worries that our communication might break down and I'll shut him out. When we had our first serious talk about SCA3 as college juniors, I struggled with what I should tell him and what I should keep to myself. I was afraid that whatever I said might compel him to get tested for all the wrong reasons. I desperately wanted to know if he had SCA3 but I didn't want him to get tested and possibly ruin his life if he couldn't handle the results. There was a one hour train ride where we sat in silence because I couldn't trust myself to say the right thing. The memory of that train ride still haunts him. I had to remind him that I wasn't shutting him out, I was demonstrating a tremendous amount of maturity for a 20 year old under a lot of pressure!

It's hard to imagine that after tomorrow, our lives could be changed forever. I wish it didn't feel so binary - that it has to either be great news or terrible news. There is no in-between. It feels like my heart is about to burst from all the suspense of waiting. Hoping that it doesn't drop, break, and shatter from bad news. Feeling too scared to anticipate good news. I don't know if I will be ready to talk about it right away. We'll just have to take it one day at a time.

Woolamai Beach, Australia, 2011

I normally post random travel pictures to accompany these serious blog posts but this one is oddly appropriate. It seems like Jeff is facing the great big unknown all by himself but it doesn't mean he's alone - I'm behind the camera taking this picture. And I've got his back.

A Consistent Workout Routine

I never put in the effort to exercise regularly until I moved to the Bay Area, where it felt like everyone was super active and outdoorsy. I'm not either of those things, so it took a lot of effort for me to start working out. Over the years, I've tried a couple of different routines with varying degrees of success:

• I started attending a hip hop class once a week, with the hopes that it would be funner and more interesting of a workout. It was fun until the regular instructor quit - I ended up quitting too, as I wasn't a fan of the new instructor.
• One of the companies I worked at had a gym with nice equipment and towel service, which made it very convenient and pleasant to work out. I spent 40 minutes on the elliptical machine 3-4 times a week. When I quit my job, I also quit the regular workouts.
• I bought a Groupon for one month of unlimited yoga at a nearby studio. When the month was up, I was too cheap to pay the regular monthly rate so I stopped going.
• Jeff and I started hiking every week with a group of 6 other friends. We ended up hiking all around the Bay, with the goal of ultimately conquering Half Dome in Yosemite. After almost an entire year of hiking, we all made it to the top of Half Dome! I subsequently lost my motivation to ever hike outdoors again. Did I mention that I'm not an outdoors person? 

Yosemite National Park, August 2007

I could go on and on with more examples but I think you get the picture. I rarely exercised more than once a week - and when I did, I only did one type of exercise at any given time. I also found it hard to maintain a routine for more than a few months at a time. 

I'm still a long way's to go from a perfect routine but I've definitely improved quite a bit in the past few years. Here's what has worked for me:

• Invest in my health  - For me, this meant joining an expensive gym. I know this sound utterly ridiculous but because the membership fee is so high, I feel obligated to go often to make it worthwhile. There are certainly other investments that are more cost-effective, such as buying workout props, equipment, DVDs, etc.
• Find a routine that keeps it fun and interesting - Thankfully, the expensive gym has great classes and instructors that help me mix up my routine so I don't end up doing the same workout all the time. These days, I try to incorporate kickboxing, pilates, yoga, and running into my weekly routine. I spend most of my time running but I go to at least 1-2 classes per week to keep it interesting. I try to arrange my workout schedule to attend the classes and instructors I enjoy the most. I still haven't found a way to incorporate weight training into my routine though. I find it boring to weight train on my own and I'm too intimidated to try a Body Pump class. 
• Make time for mini-workouts - I try to exercise 4-5 times a week but of course, life happens so that isn't always feasible. On days where I have long meetings and I can't do a regular workout, Jeff and I will take a brisk 20-30 minute walk after dinner. It's a great way for us to catch up and connect - we have some of our best talks during these walks. Other times, I will look for workout videos on YouTube to do a quick routine. Anything to get moving, even if it's not a full, sweaty workout.
• Get motivated - If Jeff has SCA3, I want to be healthy enough to take care of him and any future children we may have. I don't want to be bogged down by health issues that could have easily been prevented. There are enough to worry about that can't be prevented.

I worry about how my routine will change if we have kids. We will probably invest in a treadmill so that we can work out easily and conveniently at home. I will miss the variety of workouts that my current gym offers though. Hopefully we'll figure out something that works if/when we get to that point. Now if only I could do something about my terrible eating habits...sigh. Another post for another day!

Still waiting...

I'm finally done with all my Italy and New York recaps, so it's back to the regular stuff for now until our next trip. It was fun to turn this space into a travel blog for awhile - if only I could be a professional travel blogger. :)

Jeff got the SCA3 test the week we left, but it's going to be another 2-3 weeks before we can get the results. Even though the date is getting closer, it still feels far away so the reality of it hasn't quite set in. I hate that there's so much time in between the testing and the results. I suspect they do that on purpose so that you take the time to weigh your decision and the possible consequences of either result. I've been thinking about this on and off for the last 12 years so I feel like I've had the time to digest our decision, although I can't say we'll ever be fully prepared for it. I can't guarantee we won't second guess our decision and back out of our appointment but as of right now, we're pretty determined to stay on course with our plans.

In the meantime, I've started taking some preliminary steps to get my body baby-ready for if/when that time should come. It may seem like we're counting our chickens before they hatch but I like to be (over) prepared and we need the distraction in the meantime.

I stopped taking birth control pills in September, as my doctor said it could be a few months before my body starts ovulating again. I reluctantly bought a Clear Blue Digital Ovulation Predictor Kit with 20 sticks for $35. They're expensive but highly rated and easy to use. I didn't realize until after I bought the kit that it doesn't confirm ovulation, it just detects the surge of hormones that typically precedes ovulation. Oops.

I have a 30 day cycle so according to the instructions, I should have started testing on cycle day 13. That seemed kind of late to me - I assume ovulation happens around day 15 so the hormone surge could be day 13-14, as it occurs 24-36 hours before ovulation. If ovulation happened any earlier, the OPK could miss the surge altogether so I decided to start testing on day 10. The smiley face came on day 13 so I'm glad I started a few days earlier and I didn't have to waste too many sticks until I got to the smiley face (which indicates the hormone surge). I tried doing some research on when to start testing but I found mixed opinions/ideas - start tests on day 6, wait until day 13, test twice a day, test first thing in the morning, test anytime except first thing in the morning...it was so overwhelming and inconsistent! Either way, starting on day 10 worked for me, assuming I didn't get a false positive.

I also started taking folic acid supplements with my regular daily vitamins, as my doctor says that folic acid is the only supplement proven to make a difference. In fact, women should start taking them a few months before they start trying to conceive so I'm not actually jumping the gun on this one. I'm also looking around for a pre-natal vitamin to start taking once I run out of my current vitamins. Even if the other supplements aren't "as proven" in terms of pre-natal health, it can't hurt to get more vitamins in my body.

Even with the distraction of peeing on sticks and finding vitamins, the SCA3 test results are always in the back of my mind. Still waiting, still praying, still holding for now.

Sydney Opera House, Australia, August 2011

Waiting

So after a lot of soul searching and discussion, we have decided that we want to have Jeff get tested for SCA3. This process seems to involve a ridiculous amount of waiting, which is just giving me way too much time to overthink and second guess our decision.

We waited...

• 6 weeks to get an appointment.
• 4 hours to complete today's appointment, including a consult with the geneticist, the doctor, and a lot of waiting around until Jeff could finally get his blood drawn.
• 6 more weeks to get the results.
• 12 and a half years to get to this point.

We haven't confided in any of our friends about this yet. I know they mean well but I just haven't been able to bring myself to talk to them about this. I don't know how I'll handle the questions of "when do you find out?" for weeks on end. Whatever news we get, we'll want to share that news on our own time (if at all). Also, I can already anticipate some of my well-intentioned, baby-obsessed friends who will immediately ask us "what about kids?" if they hear good news. I don't need that kind of pressure on my uterus! 

This journey can feel quite lonely at times. I can only trust God to hold our hands through all this endless waiting. I just hope we can face what's at the other end when we finally get there.

Santorini, Greece, July 2011

Dealing with uncertainty

SCA3 imposes a lot of fear in our lives. The obvious one being that if we have children, the children may inherit SCA3. With a lot of medical intervention, we could probably mitigate this risk but there are no guarantees. Even if the children were healthy, we would wonder how many healthy years Jeff has to spend with them. Sometimes I think about this with guilt and wistful sadness, since I was the one who wasn't ready to even talk about kids when we were younger.

There are other worries that SCA3 imposes that aren't necessarily related to kids. Do we need to invest in a more handicap-friendly home? How can we continue living in the SF Bay Area if we may have to live off one income in the future? Should we move to Taiwan for the affordable home care and healthcare options? Will Taiwan's social services still be available to us by the time that we need them?

I can't blame SCA3 for the uncertainty - that's self-imposed because up until now, we have chosen not to know. But now I start to wonder if ignorance really is bliss or I'm just burying my head in the sand. In the meantime, we keep praying for His wisdom, guidance, and hope.

Moorea, November 2013

IVF, PGD...OMG so many TLAs!

Jeff and I always knew that if we were to have kids, we would do everything we could to minimize/eliminate the risk of them inheriting SCA3. I most likely won't outlive my hypothetical children and the possibility of them having this debilitating condition without anyone to take care of them just breaks my heart. From Jeff's perspective, he knows how much of a burden it can be to carry this dark cloud around and he wouldn't want to pass that on.

With that in mind, we scheduled consults with a reproductive endocrinologist (RE) and a genetic counselor earlier this year. Even though we still weren't sure if we wanted kids, we wanted to understand the options. Fertility treatments can be difficult on a woman's body and I'm not sure how much I'm willing to go through for children. Sometimes I feel like that means I don't deserve to be a mother but that's probably another conversation for another day.

The RE suggested that Jeff get tested for SCA3 because if he didn't have it, we wouldn't have to go through treatment and genetic analysis. While this is probably the most logical,straightforward option, this one has been really hard for Jeff and I to wrap our heads around. Like I explained in this post, we want to live our lives without an SCA3 diagnosis looming over our heads. But we also realize that if Jeff has the condition, he is likely to start seeing symptoms in his early 40s, based on family history. It would be one thing if we could live carefree for another 20-30 years - but based on his current age, it might just be another 7-10 years. If that's the case, we may have to get a lot more serious about future planning (with or without kids). So maybe it wouldn't be such a bad idea to get tested now.

If the results came back positive for an SCA3 diagnosis, our RE said that IVF coupled with PGD (preimplantation genetic diagnosis) can virtually eliminate the risk of having children with SCA3. The first step would be to get Jeff's DNA to set up the genetic probe to test the embryos against - this can take 3-6 months. Once this step is complete, then we would start the IVF process. I would get injections to stimulate egg production for 7-12 days, during which there would be daily 30-minute appointments with the RE to monitor egg development. Once the eggs were ready, they would be combined with Jeff's sperm to create embryos. The embryos would be screened either day 3 or day 5, depending on how they develop. Later is better but not always feasible.

We asked the RE if it was possible to do blind PGD so that we wouldn't need to find out if Jeff had SCA3. She seemed to think this was a strange request and said it wouldn't make sense to do it blind. However, our genetic counselor spoke with our RE and confirmed it was doable. I'm not sure how much information they share when conducting blind PGD. Would you know how many eggs you started out with? Would you know how many embryos made it to day 3/5 for screening? All that speculation and guessing would probably drive me crazy, I'd probably just want to know. But then again, maybe not?

After all that fact finding and discovery, I became terrified of the idea of having a child. IVF is incredibly hard for a woman to endure physically and emotionally. Getting plumped up by hormone injections so that I can produce more eggs sounds like something that is done exclusively to chickens, not humans. Plus, the idea of PGD makes me a bit uncomfortable. It seems like I'm trying to play God and determine which child gets to live and which child has to live in a freezer indefinitely. To be clear, these are just my own personal feelings on this. I think women that go through this for the dear children they will have and already love so so much are incredibly courageous and brave. I just don't know if I could handle all that.

We are leaning towards Jeff getting tested at this point. But if we find out he does have SCA3, I don't know if I will have the strength to go forward with IVF and PGD. He believes that if we find out he has SCA3, we have even more reason to have a kid because we would need that hope to look forward to and keep going. On an emotional level, I know he's right but on a practical level, my head and mint.com are screaming no. I pray that we never have to make that painful choice.

Iguazu Falls, Argentina, March 2010

"What about kids?"

I have spent most of my adult life unenthusiastic about the idea of having children. I have complicated relationships with my divorced parents, which have made me realize that even with the best of intentions and efforts, it is incredibly difficult to maintain healthy parent-child relationships. I'm also not convinced that my life needs children to be complete or fulfilled. I am so grateful for the lives we have now, it almost feels greedy to ask for anything more.

Of course, the possibility of Jeff having SCA3 plays a large part in my reluctance to have kids. I haven't had much exposure to SCA3 - I don't get to see my mother-in-law very often since she lives in Taipei, where she has access to affordable healthcare and homecare. But I know that SCA3 is a difficult condition to handle and it eventually requires 24/7 care. I don't know if I could handle taking care of Jeff in addition to raising kids. I can't imagine trying to shoulder all those responsibilities on my own. Jeff has a pretty comprehensive uber financial model that he uses to budget and project our finances but let's face it - no amount of ninja excelling is going to bring us enough financial stability to manage all that comes with SCA3 and children.

You'll never find an ROI analysis in favor of having children. The tangible costs are always going to outweigh the tangible benefits on paper. And for a long time, that's how I saw it. I approached it logically, like the engineer I was (sort of) trained to be. But just like love, the desire to be a parent isn't a logical one. It's just something you feel - and when emotions are involved, all bets are off.

I've started to see this more in recent years, since many of my friends are now parents. No one has shown me this more than my 2 year old nephew. I've always thought he was super adorable, but it was only recently that I've really started to enjoy my interactions with him. He recognizes me and will address me as "doo doo" when prompted (he's not being disrespectful - he's trying to say auntie in Chinese!). He's affectionate and provides kisses on command. Every new thing he learns and says is the cutest, coolest thing ever. I can never resist the urge to scoop him up and shower him with kisses.

I'm still not sure if I want to have kids. But I get it now. And I know it's not a conclusion I'll come to through a cost-benefit analysis.

This is rather an obscure reference for the Taiwanese pop fans -
a hilarious picture of an adorable baby that looks just like a mini-Jay Chou

Looking back

I first learned about Jeff having a 50% chance of inheriting SCA3 (spinocerebellar ataxia type 3) from his mom when we were only juniors in college. While I wasn't sure what to make of it, it all started to feel a lot more serious when I met his mom and saw the severity of the condition for myself. Things only got more emotional and complicated when my protective family found out about the condition and expressed their concerns for me and my future if I eventually married him.

My family recommended that he get diagnosed so I could know what I was getting myself into. But through much prayer and discussion, we knew that wasn't the right decision for us then. Having a formal diagnosis could provide great news and relief. It could also end up being a death sentence because we would just be getting bad news without any way to mitigate it. There is no cure for SCA3. The only thing we could do is wait for the symptoms to start and life to be over. Some lose the will to live with this definitive dark cloud hanging over their heads, even if they still have years to live full active lives. We're not the YOLO, carpe diem types (we're too nerdy and responsible for that) but we didn't want to live in fear of what will come. And that's what a diagnosis would have done for us.

I knew I couldn't live with myself if I asked Jeff to get diagnosed before we were married. If he had gotten bad news, I don't know if I would have had the strength and maturity to stay with him. If it was good news, I think he would have seen how conditional my love was and I don't know if he would have stayed with me.

Suffice it to say, there were a lot of ups and downs in those 6 years of dating. We had a lot of honest, difficult conversations in those years. We also had a lot of love, laughter, and fun. I knew I had to marry him when I realized that I didn't want to live a life without him, in sickness or health. And isn't that what marriage is supposed to be about?

A lot of our loved ones ask about our decision not to get diagnosed. Not be all Obama about this, but I would say that our views on this continue to evolve. In the meantime, Jeff lives as healthy of a lifestyle as possible by eating right, exercising, and staying active. The other thing that we do as a couple is that we try to budget responsibly. It's definitely hard at times but we do our best to save towards retirement accounts and emergency funds. Could we save more? Of course, but we're doing okay in the meantime. If we were to save more drastically, it would probably start to impact our quality of life, which is something we know we're not okay with right now. While we both still have our youth, health, and some savings, we want to experience life, see the world, and live fully. In the meantime, we pray for the faith to live this life with love, meaning, and purpose.

Paris, August 2009