Tuesday, October 30, 2018

Processing

Over the weekend a devastating incident took place in Pittsburg where 11 Jews were murdered during Shabbat morning prayers.

As more details come out about the incident it gets harder and harder not to get sucked into depression about the state of our country. There is so much hate and anti-Semitism and intolerance. It takes effort not to give in to the fear.

This morning I had a hard time getting out of bed. I knew I was upset about the added delay in treatment and while I was trying not to conflate the two, sadness is sadness. They both feel personal. Once I started crying I couldn't stop. I texted work that I will be late. I spent time crying, then tidying up. Even after showering and getting dressed my face was still too blotchy to get to work and I spent time davening.

Somewhere along this morning's hopelessness I emailed my doctor asking if it's absolutely necessary to wait before doing the biopsies. I knew that logically it makes sense to wait to do one biopsy for both tests at the same time but the thought of waiting the additional few weeks kept sending me back into heaving sobs. My people are actively being attacked and I feel inadequate in my inability to continue the tribe.

I reached out to a friend asking if I was being ridiculous. I recognize I've lost some objectivity when it comes to treatment. Wanting something so badly makes you feel irrational so I'm glad my medical team and support system are there to keep me grounded. Whatever is supposed to happen will happen.

As for the state of the country, I'm tired of people saying that we need to arm our synagogues and schools and churches and parks. That's not the answer. Less guns is the answer. Less hate is the answer. Even if there was an armed guard at the Tree of Life synagogue on Saturday, the monster motivated by hate may have still managed to get in and shoot people before anyone realized what was going on.

Just because this keeps happening we don't have the luxury of being numb or turning off the news because it's too upsetting. We can't rely on waiting for someone else to fix things. It's not good enough to give up because "I'm only one person." If you have a vote, you have the power to make a difference. Taking the opportunity to stand side by side with millions of other people with similar values and making our voices heard is the best way to initiate change. The answer is more love; the answer is more education; the answer is getting your voice heard by voting next week.

Monday, October 29, 2018

Persistent delay

This morning I was scheduled to go in for the third biopsy to see if the latest dose of antibiotics worked to clear up the inflammation. Before the appointment, I got a call from my doctor who wanted to run an idea by me.

Since it's a teaching hospital, they have symposiums and clinics and world-renowned visitors every so often. Last week my doctor attended a presentation by an RPL specialist and presented my case. In short, the specialist recommended a test similar to the CD138 stain but more specialized in that the results offer the cause (type of bacteria/microorganism?) so the antibiotics can be more targeted. Additionally, he said that the inflammation is unrelated to the ERA and we don't have to wait for one to clear up to do the testing for the other. So my doctor recommended skipping today's biopsy which is just a yes/no test, since it is uncomfortable and won't give us any information we won't get otherwise, and instead doing the new test along with the ERA.

This change of plan doesn't necessarily delay anything. The plan was always to do an ERA test after this biopsy. The results are expected within 15 days for both ERA and new test so we're not losing any time there. It will only be a delay if it comes back positive and then we have to go through antibiotics again.

I'm not a fan of not seeing something through so I'm working through the uncomfortable feeling of this morning's last minute cancellation, but there was really no reason to go through with it given this new information.

I'm already assuming that I'll have to repeat antibiotics because it will just be easier to hear that news if I'm mentally prepared for even more delay. I did the calendar math and if it does come out positive then we're looking at FEB for earliest possible transfer. Can't even process that. One step at a time.

Thursday, October 25, 2018

Keeping score

Here's a story I never published from IVF 7, originally written on 1/2/18:
Tuesday morning I got a call from my nurse with "an update about your cells." As she was talking I hurried out of my office where I have better reception so I can hear what she said. By the time I got outside she'd already moved on to hysteroscopy dates and updates from doc regarding scheduling. When she was done I asked her to repeat the biopsy results because I wasn't sure I had heard correctly. Turns I had heard right the first time: they only sent out the cells for PGD testing that day. I thought she was calling with an update on the results, not to let me know that they had been chilling on ice for over a week. I know in the grand scheme of things it's not a big deal and it doesn't affect the outcome whatsoever but I was upset that I didn't know that they weren't sent out immediately.

She tried to make me feel better by saying, "Yeah sometimes they batch them with other patients so they can send one shipment" which is definitely the wrong thing to say. My fee includes shipping which means that you can't cut costs on my dime. It bothered that no one told me that the cells weren't getting shipped until after the new year started.

What probably happened was that the lab was closed for the holidays and possibly because of all the drama with the idiot nurse, this bit of info somehow fell through the cracks.

What can I do? Raise hell again? Talk to the office manager again? Complain to my doctor? At the end of the day it's a week delay. To them it's no big deal but to me it is. We're waiting every single day to hear results .

Too many things fall through the cracks with them. It's hard not to keep score. I'm seeing a pattern here -- December sucks because everyone's mind is one foot out the door for the holidays. Maybe this clinic sucks and I'm ready to move on.
Reading that back all the anxiety and stress of those months comes flooding back. During this delay I have a lot of time to think and one of the things I think about is how much the old clinic sucked. I had a hard time thinking about switching; not only because of all the retesting we'd have to do and the cost, but also because of the feeling of failure that comes along with moving. It felt like new clinic was a last resort I wasn't ready for, even though the reality was far from that.


Recently someone asked me for an RE recommendation and I gave my new doctor's info along with singing praises. When asked about why I left my old place I gave a general "not the right fit" because that's ultimately what it was -- I know that others have had success there. It got me thinking about specifics and I ended up with a pros and cons list.

OLD CLINIC:

Pros:
- Less expensive
- Reliable
- Known
- Professional
- Pharmacy discount
- Stand-alone fertility clinic so everything is in one place and only fertility related

Cons:
- Sterile environment.
- Very much "fertility farm" feel.
- Doctor not interested in our success

While they never harmed me medically and for that I'm grateful, there were so many errors. A few listed below:
- That one time the doc told us we had two embryos when really we had none because in his haste to get us info quickly he didn't completely read the PGD report (IVF 2, Dec 2015)
- That one time the financial counselor told us wrong info about insurance that screwed us for an entire year of coverage (Dec 2015)
- That time our nurse thought we were batching embryos with a future cycle and didn't send out the cells for PGD testing for over a week while our doc was on vaca and didn't bother asking us (IVF 2, Dec 2015)
- That time the nurse gave me an outdated embryo report and not answered her phone for a full day making me lose my mind from anxiety (IVF 7, Dec 2017)
- That time they forgot to tell me the PGD lab closes for winter break, delaying getting our results by nearly two weeks without giving us a heads up there will be a wait (IVF 7, Dec 2017)
- That time I was getting ready to go to the clinic for FET 6 and got an email from my nurse saying "Glad to hear the transfer went well!" and nearly giving me a heart attack. I hadn't even been at the clinic yet - was it transferred into someone else???? Turns out she was looking at the thaw report and emailed prematurely (FET 6, Feb 2018)
- That one time they tried to take payment for embryo storage when we had asked for those abnormal embryos to be thawed and disposed (Feb 2018)
- That time they sent a bill because they didn't apply our credit to the balance first (April 2018). Then kept sending a bill even after we called to let them know about the credit (May 2018). Then not sending a refund for unapplied funds even after the balance was paid because of "some holdup" with insurance (May-Sept 2018).


NEW CLINIC:

Granted, it's been less than a year. We only switched over officially in March. If I include the second opinion we got last summer, then a little over a year. 

Pros:
- Caring doctor. Professional yet warm, responds to email thoughtfully, open to new ideas.
- Friendly environment.
- Part of a hospital, so they care about the whole patient not just the fertility statistics
- Excellent phlebotomists - one stick wonders every time, even with what were previously deemed my "tricky" veins.

Cons:
- Teaching hospital. That means grad students and fellows at most appointments.
- Cost
- Not as modern setting, for example not newly renovated, not as high quality screens in monitoring rooms.
- Part of a hospital, so while it's more efficient, there are also drawbacks like OR appointment for a hysteroscopy being scheduled between a kidney repair and bone marrow surgery.
- Learning the systems of a new place. New. Scary. Unpredictable.


It's cathartic to get this off my mind. It's understandable to be disappointed with the results from the old clinic, but I don't need to carry around the baggage of the losses.  I can remember without harboring festering resentment to weigh me down. I realize how much less anxiety I have with new clinic even though we're not yet past the ttc phase -- it's just a matter of a different outlook and better care. We made the decisions we did with the information we had at the time so I hold no regrets, but I am glad we switched.

Tuesday, October 23, 2018

When others announce

Last night I worked late and then had a stomach ache so I didn't fall asleep until after 2. Is it possible I'm still feeling side effects from the antibiotics? I stopped taking probiotics when I finished the dose but maybe I should continue for another few days until I'm sure things are back on track. Here are the thoughts I scribbled into my notes app while trying to empty my mind so I could fall asleep.

Amy Schumer announced her pregnancy via Instagram last night. Meghan Markle's announcement just last week didn't phase me at all yet this one gives me all the jealousy feels. They're both the same age. I discovered them both as famous actresses, albeit now one is a royal. I don't understand what's the difference but I really feel that ache.

Just the other day I was discussing with someone how scary pregnancy is. I have all this time to think and worry about complications. The more I think about it the more the thoughts creeps in about how what a huge undertaking it is to overturn your entire life and bring in a child to the world. Your life as you know it is over. The child is absolute top priority and everything else takes the back burner. Not to mention all the medical issues that come up during or post pregnancy and delivery. Who would choose that? People who get pregnant easily and keep their pregnancy likely have freakouts but eventually time marches on and they have no choice but to go through the challenges as they come. For me the freakouts compound with every loss. The little nagging voice asks, "Are you really sure this is worth it?"

It seems as though the time comes for everyone else. My friend is planning to see a specialist in Nov and I already assume she will get pregnant before me. When I meet someone single I just assume they're likely going to find their soulmate, date, marry, and get pregnant before me. It's almost like a defense mechanism; if I expect the pregnancy then I can't get caught off guard by it and feel that familiar gut punch.

With Markle I knew for sure she wasn't going to wait. Having a royal baby is literally her job. There's more pressure on her than anyone. But Schumer? I didn't even know she wanted kids. Not that it matters. But I didn't expect the announcement and I think that's the difference.

It serves as an important lesson to me. It's important to let the ttc people know privately when you're expecting. Give them time to process. Do not put them on a group text. Do talk to them before announcing publicly. Do share your news privately, preferably in writing not in person, so they have the space to react however feels right to them. Ironically I don't have that many to be super sensitive to everyone else has already moved on.

I've been feeling really optimistic and cheerful the past few weeks. Accepting the delay was the best thing that happened to my mental state of mind. I've been focusing on making things better: advocating for myself at work (new title in the works?), organizing the house (tidying up more often in small spurts rather than big cleaning sessions has made things so pleasant), indulging in comfort food (maybe a bit too much) and focusing on positive things. The crisp beautiful fall weather has also really been helpful. But then something triggers the feelings, like an unexpected celebrity announcement, and I'm pulled right back into it.

Maybe it's baby fever? Maybe it's being tired of failing? Maybe it's wanting to move on from this phase? Maybe it's just as simple as being envious of someone else having what I want.

ETA:
Literally minutes after this post was published, a coworker acquaintance announced her pregnancy. It's someone that works across the building in a different department that rarely overlaps with mine, but she's friend with one of our team members, so we see her every so often. Everyone else on my team knew, I was the last to find out. It hit me like a ton of bricks. She's single and religious. But also nearly 40, so she decided to get a sperm donor and it worked the first time. Of course it did. I had to go home for lunch. I occasionally wear makeup and today happened to be a mascara day, but that was because I didn't expect to cry. 

Friday, October 19, 2018

B'shaa tova

Some religious Jews are pretty superstitious. They don't have baby showers before the baby is born. There's no gender reveal parties. Some don't even buy anything until the baby is born. It's as if celebrating the good news might bring too much attention to it and attract the evil eye, at least according some. Along the same line there's a thing that people don't wish an expectant mother "congratulations" but rather use the exclamation of "b'shaa tova" which is Hebrew and literally translated as "in a good time." One explanation for it is offered here:
We recognize not to take healthy pregnancies for granted. To say "mazel tov" would imply "we're sure this will make it to birth," which sadly doesn't always happen. Thus, to show that it's in G-d's hands and not ours, we offer a prayer instead, "may the birth happen at a good time."
On March 15, two days after my fourth and most traumatizing miscarriage, I contacted the RPL specialist in New York for a appointment. They gave me the first available date: 10/17/18. The specialist was booked that far in advance. I thanked the receptionist and pledged to call regularly for a sooner appointment.

I did, in fact, call multiple times a month and in April we got moved to a September appointment. That felt like a win. I kept calling for weeks but nothing moved further. His schedule was booked solid and I started to feel depressed at the thought of having to accept waiting until fall.

Then I got a call. It was late May and the day of my husband's surgery for varicocele repair. I actually missed the call because there was no reception in the hospital waiting room. The message said to call back, but by the time I did the appointment had already been given away. It wouldn't have worked out anyway; it was for the next morning and as I was speaking to her my husband wasn't even out of the OR yet. There was no way we were making the trip that night.

Fast forward three days. It's early Friday morning and I'm out shopping for groceries before work. I get a call and my heart skips when I see the caller ID. It's the receptionist I've been talking to the past few months. She apologized for calling so early. Nothing I could say would get her to understand that there was no possible time I wouldn't answer her call. Schedule shift. Canceled travel plans. Open appointment next week. Must get an answer today and get all paperwork in before the holiday weekend. I was thrilled. I accepted on the spot, knowing my husband was on board. There was no chance I was letting the opportunity slip by.

That was it. The end of May, instead of October. It shifted all our summer plans but at least we didn't wait 7 months. It also overlapped with the mandatory wait while my husband recovered from surgery when we couldn't do IVF anyway. I could look at it that we've had all these delays. But I could also look at it that all the stuff we'd been through: the blood tests, the second hysteroscopy, the CD138 stain - all the things that take up a lot of time - we got a head start on.

Whenever I think about how frustrating it is to be waiting right now. For the antibiotics to work, for test results, whatever... I think back to this story. It all happened when it was supposed to. At the right time.

This week marks the time of when my original appointment was scheduled for. It passed without incident but the was a tickle in the back of my mind feeling like I'd forgotten something. It was only when I was reminded that I realized how this week once held so much significance.

So the wait continues and while I am impatient at times I know that whatever is supposed to happen will happen at the right time, when it's supposed to.

Tuesday, October 16, 2018

Have and have not

I've been struggling with a particular issue and I'm conflicted about whether or not to say something.

I've joined a support group that runs via WhatsApp for people going through fertility treatment. It's a mix of ages, locations, and various stages of treatment with the common denominator that we're all Jewish women. Some have kids after successful treatment while others don't.

There is one recurring issue that comes up for the women with kids: their family or friends don't understand why they still have that yearn for children even after having a child. There is no way to truly explain these feelings to someone who never went through treatment. I'm sorry that these women have been hearing hurtful and insensitive comments from family members or friends that just don't get it. At the same time, though, I feel that it's insensitive to the women in the group who don't yet have children. Any sentence that starts with "I'm so grateful for my child, but...." hurts me.

I admit that I don't fully understand their struggle. My desire to build a family is completely different from someone who already has a child. I didn't go through a full pregnancy, or delivery, or brought home a baby, or went through the infant stage and now have a toddler with all the demands and joys it entails. They have those experiences and they are mothers. I understand there is still that want to continue having children but I think it's different than someone who never had those experiences.

I hesitate to say something because I don't want to bring something up just to play 'devil's advocate' - I don't think there's room for that in support circles. No one can tell someone how to feel, regardless of their circumstances. If I do bring it up, will it fall on deaf ears because they're just not in a place to receive that feedback? Is it even my place to say something? I'm not the sensitivity police. It's a support group and people talk about whatever is on their mind, not everything is going to be exactly to my liking. At the same time, if I'm feeling stung every time this comes up then there is likely someone else also hurting for similar reasons.

What would you do?

Monday, October 15, 2018

Delay: phase II

The weekend was great - we had fabulous fall weather to enjoy. We spent Sunday enjoying being home, catching up on Netflix and binge watching Homeland.

I signed up for a pottery class that starts in November. I'm excited to learn something new. I also toured a gym nearby and started the trial period. I was sore from Thursday's workout and loved it. The holiday weight needs to come off, and then some. I already miss my Cinnamon Toast Crunch for breakfast but it's so much easier to avoid eating 400 calories rather than try to burn it off later. So back to calorie counting for me. I have a very realistic goal weight in mind before we attempt a transfer and I hope to reach it. I can only do that if I get back in the better-eating mindset.

Friday morning was the final dose of antibiotics. I had a sour taste in my mouth throughout the two weeks of meds so I'm glad they're done. I hope this did the trick and that I won't need a third round. We are now at phase II of the delay: two week wait before biopsy. After that is the wait for results.

We're looking for a destination for a mini vacation. Last year we were itching to get away and hadn't yet decided on whether we could make a major trip to Israel work (it did, in Jan). We ended up doing a fall trip to Boston for a few days and really enjoyed it. 

Now that the zika ban has lifted, I really want to visit Florida. I miss the beach. We spent all our points last year on the major trip, so we would have to pay for the Florida trip out of pocket. It doesn't seem like a lot at first, but without points we're looking at nearly $1500 for RT airfare, car rental, and hotel for three nights. I could probably find a few deals and get it down closer to $1000 but that's still a chunk of change to spend on a weekend.

So I'm also looking at more local getaways, and maybe do a Sun/Mon instead of including the rest of the weekend to cut costs but still get the flavor of a change of scenery before we move forward with treatment.

I've applied to three different jobs so far. I'm only applying to positions I would actually consider leaving my job for. I know I won't find anything that has all the same perks, but I also know that a new position is a new opportunity to learn, grow, bring in more income, and hopefully be more stimulating.

Monday, October 8, 2018

Monday

We are back to full week of work after the month-long holiday season. Essentially being the first real work Monday of the new year, it's the Mondayist Monday ever. After a rough weekend with a family member's in-law passing away and my husband traveling for an unrelated shiva visit, I expected today to be difficult. I feel the opposite.

Last week I definitely overdosed on media coverage. With every article, news clip, or senator's remarks I felt my blood boil at how this man could possibly be put on the highest court with all the accusations against him. They are so focused on winning that they are blinded to what is right and wrong. It feels like the days after Hillary's loss, except we saw this train wreck coming and were helpless to stop it. I don't think the stress has dissolved, but being past the vote is almost like permission to put it on the back burner and allow other things to take up some mental space.

I've also accepted the delay in our timeline. There's nothing I can do about it, so may as well enjoy the "time off." I looked into pottery and woodworking classes. Those are really expensive! I want to work out more and am still considering the cost of joining a gym. There are a finite number of dollars and I need to decide how to spend them. Speaking of which, I also sent out a few resumes. Every so often I say I'm ready for a new job but then remember the perks of my current position and reconsider. This delayed timeline gives me time to think, and I think I'm ready to see what's out there.

I'm happy to be back in routine and get back to a schedule. We'll see if I'm still as chipper about this by Friday.

Thursday, October 4, 2018

Antibiotics

As expected, the antibiotics are wreaking havoc on my stomach. While I don't normally drink that much caffeine or alcohol, right now I'm having none. Drinking a lot of water. Having the medication with food helps, although I need to time it correctly in the mornings with the synthroid. If I take them at the same time and then can't eat because of the synthroid wait window, I get nauseous. But if I take the synthroid separately then I worry I'll forget the ab and miss a dose. I'm taking probiotics. Also brushing more often to try to get rid of the gross taste in my mouth. One more week to go.

My doctor wants to wait at least two weeks after the last dose to do the biopsy. Of course. It's not like I had in my mind that I finish the last dose one day and then do the biopsy the next. This whole deal delays the timeline by six weeks.

It's fine, I'm fine, we'll be fine.

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