Wednesday, May 30, 2018

Specialist update

On Friday, barely an hour after my last post about the specialist was published, I got a call from their office. He had a change of travel schedule and had an opening on Wednesday after Memorial Day weekend. My girl got us on the schedule for Wed morning and made sure that all the paperwork I submitted was received and added to my electronic file. Bless her.

We booked a hotel and drove in on Tuesday evening after work. Traffic wasn't terrible and we were in by 10:30 pm, parked the car, and went walking around the city looking for dinner. We were passed out asleep by midnight.

The appointment was this morning. The office was recently remodeled and everything was bright and clean and new. The doctor couldn't have been nicer, but beside that he was sharp and engaged. He had a methodical way of thinking that I appreciated. It was about two hours long including going over all our history, answering a lot of his questions, tv ultrasound, and a plan of action.

Among a bunch others, his recommendations include:

  • Glucose/insulin test
  • Toxins test
  • CD138 stain to check for inflammation in the lining
  • Hysteroscopy (if pics from the one I had in Jan don't show what he's looking for - need to have those transferred over)
In addition, he had recommendations for future IVF and FETs, mainly to change up the medication and protocol. So in short, everything. All of our appointments will be done locally with our new RE so we won't have to go back and forth to see him, but he will still be managing care from his office and be in contact as we go on.  After the appointment we got lunch and joined traffic to get home. The whole trip was basically 24 hours. 

I hesitate to say that I'm hopeful. I am encouraged so I guess that's a form of hope, but it's hard to let go of the baggage we're carrying around in the form of multiple losses. Continued failure weighs you down. He seems to really understand the field in a way that gives him the ability to take a bird's eye view of the situation and make suggestions for improvements. Other REs have the exact same tools but just aren't looking for the same things. I hope we're able to rule out a bunch of things, or even figure out and treat issues, and that it brings us closer to success. At the very least it's something to do while we wait for my husband to recover from varicocele repair. Maybe I am hopeful just a little bit. 

Friday, May 25, 2018

Specialist

When I first called in March for an appointment with the recurrent pregnancy loss specialist in New York, I was told that he was booking in October. What could I do?  I didn't believe we'd have to wait that long but I took the appointment and prepared to wait until the first opening.

I call weekly to find out if there are any cancellations. I already know not to call first thing Monday morning. Not only because the morning shift receptionist is slightly more grumpy, but also because no one has had a chance to cancel yet. Tuesdays before noon are the sweet spot. At one point I was able to move up from Oct to Sept. Score. After that it kind of got stuck there for a few weeks. Now when I call I'm being told that he's booking in March 2019.

While my husband was in surgery on Tuesday I got a call from the girl I always speak to in their office. She didn't leave a voice message and by the time I returned the call an hour later the spot had already been given away for Wed morning. However, my girl told me that if the couple does end up showing then we can have their spot. Yes, I told her that would be fine and that I would definitely take it. She said she needs them to show up before she can shift things on the schedule but that I'll get a call again the next day. It worked out perfectly because, all things considered, as important as this appointment is, realistically there was no way we could make it to NY hours after surgery. We would have needed to get on the highway four hours after getting home from the hospital and spend the night driving. Not so great right after a procedure that makes it uncomfortable to sit.

The next day I got the call back. Good news and bad news. The good news is that the couple did show up so their appointment became available. The bad news is that the doctor had his own waitlist of people he's trying to get on the schedule. My girl said she advocated for me, saying we've been waiting a long time and that the appointment was all but promised to us. He apologized and asked her to apologize to us but apparently these other folks had priority. It wasn't all bad news: I got their spot which is in July. So it wasn't as soon as I wanted, but still sooner than September. Sweet! I also really appreciate that she advocated for us. She doesn't know us personally but still went to bat - I feel very grateful.

At this point I know that I need to get all the paperwork submitted right away so that if there is another last minute cancellation we don't have to scramble. I don't know what we expect him to tell us or what he can do, but I know that I don't want to keep trying the same thing and have the same results over and over. He may say there's nothing we can do but he may not; and for that it's worth the time and effort to go see him. Clearly he must have something to say if he's booking a year out. We'll see.

Shabbat shalom.

Thursday, May 24, 2018

Varicocelectomy

On Tuesday my husband went through bilateral varicocele repair surgery. This procedure has been on my mind for many weeks causing anxiety and stress. I'm relieved it's behind us.

We understood that it's a simple procedure and for some reason we assumed it was similar to an egg retrieval. I think it can be considered simple compared to major surgery but it was a lot more than we expected. By now we understand most things about an egg retrieval and have the schedule pretty much memorized: we get there 90 min before scheduled procedure, we're together the entire wait time, separate right before I get called to the OR where he waits in the quiet waiting room (usually on his own) for about 20 minutes, then as soon as I wake up they get him and we're together until discharge. The whole retrieval is about 3 hours total. I don't know where we got the idea that this surgery would be similar but it was not.

For starters, surgery was scheduled at a major hospital, not a specialized clinic. That meant we were among tens of other families in the queue for all types of surgery that day. The procedure was scheduled for 1 pm and we were told to arrive two hours early. At 11 am we arrived and signed in. He reviewed some paperwork and was then called back  on his own to get situated. They asked me to go wait in the Family Waiting Room (FWR) which was crowded with about two dozen people and smelled like an airport bathroom. This was already a surprise - I didn't realize we were separated immediately. I didn't know they wouldn't let me into that part and it upset me more than I already was.

Nearly an hour later (yep), they let me go back and wait with him while waiting for the operation. He was dressed in a hospital bed and hooked up to IV. I cried when I got to see him and nothing had even happened yet. I was so scared and so anxious that I couldn't help it. Nurses came to check in on him, ask questions, get information. The anesthesiology doctor came in, then the anesthesiology nurse, then another OR nurse but our appointment time came and went without any signs of progress that things were moving. The doctor poked his head in around 1:30 saying he'll be right in. When he came in he also went over paperwork and we discovered that the procedure is actually two hours long, not an hour like I'd originally thought. We finished paperwork and he said we'd be going in shortly.

At 2 pm he finally got rolled out and the surgery began. I settled into the FWR and waited it out. I came woefully unprepared. I didn't bring earphones so I couldn't listen to anything on my phone. I should have brought some kind of bag to keep all of his stuff in. I also didn't bring anything to read or eat. I was too anxious to eat anything before we left and wasn't hungry throughout the day but by 3 pm I was starting to feel it and found some kosher pretzels and OJ in the gift shop. Just after 4 pm the doctor came out to tell me everything went well and give me an update. I was gathering my stuff to go see my husband but doc said not quite yet - that he was still waking up in recovery and I'll get to see him soon.

That's when the real wait began. I was anxious to get to my husband. I wanted to see for myself how he was doing. I checked in with the FWR staff and they said it sometimes takes an hour or longer (!) before I can get taken back.  At 5 pm I started bothering them more often asking when I can go back. I understood that they couldn't make the nurses allow me back any sooner but I didn't care. They do their job, I'll do mine.  At 5:30 pm they finally took me back and said I have five minutes. Just five minutes. I went back to the big recovery room where all the patients recovering from surgery were in one large room. The beds were around the perimeter with only side curtains on either side of the beds and the nurses station at the center.

My husband seemed alert and in good spirits albeit in pain. They said they couldn't release him until he went to the bathroom, because they had to make sure it was all still in working order before releasing him. He was dehydrated and in pain. It was frustrating that they wouldn't let me sit with him. I had to go back to the FWR. Meanwhile other family members were reunited with their loved ones and the room was dwindling down to the last half dozen or so people still waiting. It was almost an hour later, and after much prodding, that I was allowed another visit. They had decided that since he wouldn't be staying the night, he would just get discharged from the recovery room. So instead of wheeling him to a post-op room, which is a single room with more space and privacy where I would have been allowed to stay with him, they kept him in the recovery room where family members aren't allowed.

I wanted to know what was taking so long - why couldn't we go home? Turns out that our hero, who wanted to go home even more than I did, decided to chug water to combat the dehydration and threw up. They had to verify the cause of the throwing up and make sure it was ok to release him. By the time I was there for the second visit he was already getting released - IV was out and discharge papers were reviewed, he just needed to get dressed.

We got home around 8:00 pm tired and hungry and totally spent. I dropped him off at home and tucked him in bed before going to the pharmacy to fill his pain meds which was another adventure. I went to four different pharmacies before I was able to get the order filled. For some reason unknown to me everywhere I went was out. I was exhausted and just wanted to get my husband pain relief. When I got to a pharmacy that confirmed they have it in stock it was 8:57 pm. They said they were closing for the night and that I should come back tomorrow to get it filled. All the stress of the day hit me at once and I started crying right there at the counter, explaining that my husband just had surgery and that I'd spent nearly an hour trying to hunt down some relief for him. Luckily the pharmacist took pity on me and filled the prescription. Within 7 minutes I was back in my car with the prescription in hand. Thankful and exhausted I got home, had a bowl of cereal, and passed out. It was such a long and exhausting day. I was a mess the majority of it.

All day I'd been fielding texts from well-meaning family and friends who wanted to help: drop off food, bring us stuff, checking in. We didn't need anything - we just wanted to go home. I appreciated the concern but I realized how frustrating it is to continuously get bombarded with questions to which I had no answers. Getting an "update?" text from someone when I'm exploding from worry because it's been 90 min post surgery and they won't let me see my husband is beyond frustrating. I'll remember that for when I'm on the other end. At some point I just copied and pasted "I don't know" and used that as my default response.

The doctor was fabulous. I would highly recommend him to anyone needing his particular specialty. We were completely out of our comfort zone with regard to this whole ordeal and it was a lot more than I anticipated when we first made the initial consultation with him, but he took us through it step by step. I feel like there was a lot of hashgacha pratis with regard to his doctor: getting our initial consult moved up from 5/1 to 3/29 and get the ball rolling early. I'm also glad we ended up getting the procedure done on a Tuesday rather than Friday, which is the usual day this doctor does varicocele repairs to give the patient the weekend to recover. Considering how ill-prepared we were and how much longer than anticipated the procedure took, there would have been shabbat issues to deal with had it been on a Friday.

Recovery is going well. Soreness from the incisions, pain from the surgery, and tiredness from the anesthesia are all there as expected. We're officially in the countdown to IVF.

Friday, May 18, 2018

Shavuot 2018

Stock photo
It's been busy the past few weeks. Whenever I started writing I'd get interrupted and distracted.  

Mother's Day passed without incident. I was so worried about it and the pressure with the lead up to it, with all the ads and expectations, was very difficult. But the day itself was just another Sunday. We did brunch with the family as a memorial to my grandmother who passed away on MD without any formal MD celebrations.

It's the busy season at work. I come home exhausted, barely able to keep my eyes open. It's basically just come home, forage in the fridge for some dinner fixins, and veg in front of the tv until bedtime. I don't have mental energy to do anything else. The constant rainy weather hasn't helped either. Currently we're binging the Handmaid's Tale. I know we're supposed to sympathize with the main character as the victim, and I do, but I also really understand the anger from the Wives and the toll infertility takes on their life. It's a horrible, terrifying, and addictive show.

Tonight is erev yom tov. Thanks to my husband's nightly reminders, I'm still in the count on day 48. I haven't done any of the cooking for the 3-day yom tov coming up. It took so much energy just to go shopping for groceries. Last night I came home after another long day at work and tried to get myself to start something, anything, with regard to cooking/baking. I thought maybe I'd Instagram the steps as some motivation to get started, but it wasn't happening. The result is that I'll likely pare down the menu and make it more simple. We were too late in inviting people -- most already had plans -- so it's just us for most of the meals. That's fine. I'm happy to sleep for three days.

The surgery is scheduled for next week. It's been on my mind a lot and I've been so worried about it that at this point I'm excited to get it over with. I'm hoping it will all go smoothly with a quick and easy recovery. I only took the day of off but he took the rest of the week, just in case. Once the surgery happens we have a clearer timeline toward IVF. I'll admit that it's been nice to have a mandatory break and just live regular life. There's something to be said about that feeling of peace that comes with acceptance of things beyond your control. I'm still calling the specialist office every so often, who is now booking in March 2019, for cancellations. I'm still 7th on the waitlist. I'll keep calling.


I'm planning to cook when I get home from work today. I'll post pictures of my cheesecakes if I have time to make any. Shabbat shalom and chag sameach!










Friday, May 4, 2018

Prickly

Earlier this week I had an icky day.

I started my day by facing the scale and discovering that I'd gained ten lbs since February, since our last transfer. Between the loss, pesach, stress, and lack of caring, the weight just creeped on. I carry it well and my clothes hide it, but it disgusted me. I worked so hard to drop each pound and they just came right back as soon as I lost focus. The nutella train needs to stop. Back to counting calories. I text my husband the abysmal news and vow to start meal planning again.

Then as I get dressed for the day I have a hard time looking in the mirror: my skin looks pale and blotchy, my teeth aren't as white as I'd like them to be, I can't get my hair to sit right. I give up and get myself to work with a lame calorie-counted lunch.

Most of the morning goes by in a blur. On my mind is the stress that my husband needs to be seen by the pcp for his pre-op appointment. During his appointment I get text updates that the pcp office doesn't know why he's there and where's the paperwork with the checklist of what the urologist requires for his pre-op. As they figure it out at the doctor's office, I have an unusually quiet day. Usually people at work are bothering me: needing things, asking questions, calling me, sending me emails, coming over to chat. But on that day, some people were out, some were stuck in meetings, some were just busy on their own. For me it meant productivity. I turn my phone off and focus all my energy on getting work done. I get caught up from weeks of being behind due to brain fog and distraction. Once my phone is back on I get updated that they figured their shit out at the doc's office. I also get updated about a playdate happening among friends on maternity leave together. (Moms who have been so protective of their babies that just the week prior they weren't comfortable having other people hold them but were clearly now ok with toddlers being near them. Whatever.)

By the time I get home, I'm spent and have no energy to make dinner or even talk. But it's not over yet. I still have to wait for sunset and make my way to the mikvah. I don't want to. The whole concept, in theory, is beautiful and I follow it because it's a mitzvah. In reality it's a pain in the neck. My usual evening has me in PJs in bed by 7 these days, no matter how light it is outside. Being dressed and having to go somewhere past that is just one big fat NOPE. But I did.

I got to my prep room and thought about all the things that were bothering me. I wanted to but I couldn't cry. Maybe I've already cried all the tears I had. It upset me that I didn't belong at that playdate. It upset me that my husband had to take time off work for a pre-op appointment; that he even has to have an op. It upset me that I had to deal with months of waiting before we can even try again, all the while feeling my biological clock hammering away getting ever closer to that AMA stamp on my medical chart. It upset me that I had applied for a job and never heard back. It upset me that it feels like everyone around me is so busy with their own life that they don't have time to check in. It upset me that I didn't feel like myself: who is this sad girl looking back at me in the mirror? Where is the ambitious, social, active, happy person I was 10 years ago? Probably somewhere still in there, treading water in the overflowing pool of uncried tears.

These thoughts were swirling in my mind as I got ready. I called the attendant and when she came I smiled and greeted her as usual. As I went in to the pool something new happened and I started feeling a sensation of drowning. By the final dunk I was fully panicked but held it together until I got back to my room. That's when the tears started. I was full on sobbing about all the things that bothered me. About how we can't have a "normal" life and no matter what we do we're just constantly thinking about this challenge, even when we're otherwise engaged or happy about something else - it's literally always on my mind. I don't want it to overtake my entire being but it has and I didn't even realize it. In the back of my mind I remembered that I need to clear out the room for the next person and started getting dressed but kept pausing when the heaving sobs took over.

I took a few minutes to daven while I tried to compose myself. I prayed for the strength to get through the next few months, whatever they may bring. For courage to get through the surgery and however many IVFs are ahead; for patience during the recovery period; for calmness while we wait for the specialist. For success. For finances. For progress. For luck. And after that I prayed for wisdom to know when to stop trying. And for peace with that decision if it ever needs to be made. It was the first time I think I admitted to myself that it may be necessary to one day consider that, as much as I fear it, and maybe in a way asking for permission to get off the nightmare rollercoaster. Maybe just knowing it's an option to stop helped. Maybe it was admitting that we may eventually have to was what helped me calm down but it worked and I got out of there. I came home and got a hug from my husband. Everything started looking up.

The next day I felt infinitely better. Maybe it was necessary to go through that uncomfortable, prickly, distressed day to come to terms with accepting where we are and what we're facing. It's still going to be an uphill battle, we know that. Trying means risking another loss; we know that too. It's the scary unknowns and the lack of guarantees that adds extra stress to the whole process.


As hard as it is, and as much effort as it take to just get up and out every day, I know I can make a difference in my happiness by making choices that lead there. It's a work in progress.


Shabbat shalom.

Tuesday, May 1, 2018

Seeking support

Last night I went to a community sponsored support group for pregnancy/infant loss. I heard about it from my husband who heard an announcement at shul on shabbat. I kind of stopped going to shul because it's hard for me to see the stroller parking lot.

I wasn't sure I was going to go until the last minute. While I really wanted to find support and people who would understand what I'm going through, it was also really difficult to admit my position and put myself in a group I don't want to be part of. I was anxious that whatever was going to happen, I would just sit and cry among strangers the whole time. I had little expectations but I also knew I couldn't complain about lack of community support if I didn't take that first step to show up.

There were four speakers: a LCSW talking about the Torah perspective of loss; a therapist who shared some tools for mental healing; a personal story from someone who experienced loss; and a message from the director of a pregnancy loss support non-profit.

There were a few overall messages:

  • it's not your fault - nothing you did caused the miscarriage/loss; 
  • no person should go through loss alone - there are resources for each person and the couple; 
  • if you want us, we are here
The event took place in someone's home and ran longer than expected. There were about 60 people who showed up, which is about 40 more than the organizers expected and planned for but were thrilled at the turnout. While there was crying in the room, it wasn't mine. At the end of the evening the director of the non-profit mentioned that she had a voice recording of the evening for the people who said to her that they wanted to come but just couldn't -- I understood them. 

As expected, I didn't walk away inspired or feeling more supported but I'm glad I went. I don't know how to fix the taboo that surrounds infertility and loss but I think the first step is showing up. I'm not shouting my pain from the rooftops but I'm also not interested in hiding it - I have nothing to be ashamed of. Loss and grief makes people uncomfortable, but clearly there's a desire by people to talk and share. 

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