Life is a wild ride

In the midst of sewing for myself and sewing a lot for other people, there's been a global pandemic, I lost my father, learned I not only carry a genetic disease but have some small signs of it, had abdominal surgery and have gone through 7 rounds of IVF.

Whew, it's been a lot. And I know I'm not alone. It's been a wild ride for everyone with emotional highs and lows and everything in between.

Sewing

Ok, starting with the easy subject! I started teaching "sewing with knits" classes as part of a local adult education program (AccessCVU). This was so fun and challenging and I've learned SO much from my students (and not like "I've learned how to be a better teacher", no, I mean I've learned real skills, tools, made connections and found new resources thanks to my students!)

I sewed my own wedding dress with my sloper and some gorgeous fabric I picked up at Renaissance Fabrics a while back. A lovely aqua silk/linen blend with sort of a swiss dot. I love my dress and need to do a longer post on that one specifically. 

I was contacted by a local dance choreographer to create costumes for an upcoming dance film she was working on. I had about 6 weeks lead time and it was really interesting to see how that collaborative process came together. I had a lot of fun creating designs that you generally wouldn't wear every day and sewing up outfits with mesh inserts to resemble paths and street grids.

  

Next, I created a wedding ensemble for my husband's cousin who wanted essentially this piece "but in LEATHER" - outfit consisted of silk pants (underlined with linen) and a top lined in silk and made of long narrow strips of leather. I need some photos of her on the day - it was incredible. It was maybe the hardest thing I've ever worked on but it did turn out really nicely.

Inspiration:

Finished outfit

 

I finally got started on an 18th century outfit, starting with shift and stays! I consulted my friend Eliza on stays construction/fitting. She was immensely helpful to the process! To date I've made

18th Century Shift

Under Petticoat

Stays

Pocket

Linen Petticoat

Historically inaccurate "jacket" (aka short gown - methods are accurate enough but garment is not)

Apron

Cap

Pin Pillow

False Rump

Fancy petticoat (from old curtain lining)

In progress: Chintz gown (from old curtains)

(Isn't this false rump ridiculous?)

sorrynotsorry for crappy bathroom mirror selfies

There's been a lot of sewing over the past few years, more than I can document here! I'm currently mostly focused on a wedding gown for my soon-to-be sister-in-law. The wedding is in early March, so we are in crunch time! Because I'm me, I'm also working on a pair of stretch velveteen trousers and a silk blouse for my husband's sister. 

Health

In May of 2021 I went to the ER with extreme abdominal pain. I had a similar attack in January of that year that I suffered at home for 8 hours. This time I'd been out hiking and on the drive home I started having pain so intense my legs were shaking and I worried I wouldn't make it home. I called a friend to drive me to the ER and after a very complete workup, they told me I had a 6cm cyst on one ovary and an 8cm cyst on the other that looked like endometriosis and they hypothesized that one or both of these had cracked open and leaked fluid into my abdomen. 

I met with several gynecologists who advised that the answer was surgery, but that I needed to plan carefully. If having kids was something I was planning on, I needed to try to get pregnant shortly after my surgery because the risk of recurrence was pretty high. I proceeded to read everything I could about endometriosis, endo surgery, how to find a good endo surgeon, etc. A coworker of mine, who also has endo, recommended her doctor to me - Dr. Jess Sisto - who performs endometriosis surgeries regularly. I met her in Sept 2021 and decided she was the surgeon for me. She is the most humble surgeon I've ever met and extremely kind. In a world when most women with endo don't receive a diagnosis for an average of 7 years and are met with all kinds of medical skepticism, I was so lucky to find her. She listens, empathizes and does not doubt your pain or experiences. She told me that she could perform my surgery, with robotic assistance, at the hospital, but not until probably February.

Meanwhile, and thinking about reproductive options, I got genetically tested to make sure I didn't carry the same gene that my family has. An MRI in 2011 showed no signs of the brain lesions that exemplify the disease, so this was a last dot-i's/cross-t's situation. I waited on tenterhooks for the results and when I got them back I was shocked. I did carry the same mutation. I comforted myself thinking how INCREDIBLY lucky I am that even though I have this mutation, I didn't show any signs of the disease.

My husband and I had decided years earlier that if we ever did try to have biological kids, I would get tested and if I had the gene, we would opt to do IVF with genetic testing or adopt. I always thought of this as a contingency we'd never need. But staring at the results, I knew exactly what our next move would be. 

My surgeon was actually friends with an IVF doctor nearby and between the two of them we formulated a plan that included trying some IVF retrievals at the end of 2021 and beginning of 2022. We went two rounds before conceding that it wasn't working. The endometriomas were in the way and impeding my ability to produce mature follicles. So I waited for surgery.

And waited.

... and waited.

Our tiny local hospital had converted 4 out of 5 surgical suites into COVID beds for critically ill patients. All "elective" surgeries were put on hold. And I started having mini-episodes like the one that had sent me to the hospital. Once a month (but of course not on any kind of schedule!) I was hit with crippling pain that left me weak and incapable of more than walking short distances for 4-5 days. As this progressed, I certainly felt that my surgery wasn't "elective" but I also wasn't in danger of dying (though I might have felt like that sometimes during the worst of my pain). I met with my surgeon, Dr. Sisto, who suggested I try to get on the schedule of a surgeon in Boston or another in NYC. I filled out so much new patient paperwork during that time, with anyone she recommended that was covered by my insurance (no matter how painful, I couldn't afford to pay for surgery on my own). Dr. Sisto also suggested I try some dietary modifications to alleviate some of my pain. I went all in with an elimination diet for 6 weeks - no dairy, no gluten (I haven't been able to eat red meat since 2011 which is probably related and I'm already on a sugar reduced diet). After the six weeks I reintroduced first one then the other. Gluten has a meager effect, but dairy's effect was huge. So I reduced or eliminated those from my diet. My symptoms did improve a bit. I noticed when I ate dairy that I felt like I had an old school knight's mace in my belly with the spikes retracting and then thrusting out. I told myself that rather than a rule about what I was not allowed to eat, this was about making informed choices. Did I want to eat ice cream and deal with the painful consequences? Sometimes no, sometimes yes. Ultimately the choice was mine.

FINALLY in May, Dr Sisto contacted me to say that something had opened up in her schedule, the OR was open again, and she could get me in. The plan was that she would "shell out" my ovaries, trying to preserve as much normal ovarian tissue as possible, while removing as much of the endometrial tissue as possible. She would browse my peritoneum and other pelvic and abdominal organs for other endometriosis and would remove as much of the disease as possible - with the notable exception that she was not a bowel surgeon and if I had any significant bowel disease she would not touch that. We could evaluate my pain later and go back in if needed with a bowel surgeon. [Fun fact, some people have endometriosis on their diaphragms or even around their lungs!] We also opted to remove my fallopian tubes since they might negatively impact fertility and I was committed to the IVF route. (I wanted to ensure I'd never accidentally get pregnant - as far fetched as that seems - and avoid passing on the CCM mutation.)

I was in surgery for 4.5 hours and was in so much pain afterward I couldn't walk to the toilet or sit or stand up without assistance. Dr. Sisto had done as much as she could with my ovaries, removed the fallopian tubes, removed some endo from the peritoneum just in front of my uterus and noted a lesion on the sigmoid colon that was deeply involved enough that she didn't mess with it. She also found some small amount of disease on my appendix, which was so thoroughly vascularized she didn't want to initiate a major bleeding event right at the end of surgery and opted to leave alone. 

Despite the incredible pain at first, I did recover quickly. The five incisions used for the laparoscopic surgery were tiny, just under an inch long each. I don't think I was back to running right at two weeks (the most optimistic prognosis) but it wasn't too long after that. 

Then I got married in July and planned to start another IVF retrieval cycle the day after the wedding (the docs wanted to schedule me sooner, but I pushed to wait till after the wedding).

In August I got an MRI to check the status of mah brains - it had been 10+ years since my last MRI and we wanted to check on things before I potentially got pregnant. (My sister who has had brain surgery but still has a lingering bit of lesion had planned C-sections with her two kids to avoid raising her blood pressure too high during labor and delivery.) The MRI revealed a 7mm lesion. I only know because I called the MRI center and got a copy of my report. My neurologist still hasn't called with the results (it's now February 2023 or 6 months later). All in all a 7mm lesion isn't so large, and it's in a not-terrible location, but of course no one wants to hear they have a brain lesion, no matter the size or location. It's not acting up atm so I think even if I get into neuro, they'll say we'll wait and watch. I still have so many questions though - what do I watch for?! how often do I need re-evaluation/MRIs? Is this thing in an operable location if that eventually becomes necessary?

Until I hear back from neuro, I'm kind of on my own here. According to Angioma Alliance, there are a few things you can do to help yourself such as taking vitamin D and avoiding emulsifiers. So let's add another food category to my "can't-eat" list. 

Since then, I completed 5 more rounds of IVF and have finally had some light at the end of the tunnel. Here's a brief IVF rundown:

• Wait for your period to start - when it does contact the clinic with "day 1"
• Optional: take OCPs or estrace for days/weeks until the clinics next cycle start.
• Go to the clinic for a baseline where they test blood hormone levels and do a transvaginal ultrasound.
• Assuming labs and US look good, you start injection medications to stimulate the ovaries to make lots of follicles. This consists of two shots, one in the morning and one in the evening.
• Around day 5 of injections you go back for another set of bloodwork and ultrasounds. 
• You add a third daily shot. This one slows your ovaries down and prevents the one dominant follicle from jumping too far ahead.
• You return to the clinic every other day for labs and ultrasound until they see that your follicles are big enough and hormones at the right level to trigger.
• The clinic schedules your retrieval and your trigger is scheduled 36 hours before that. It's tightly timed and has to be given within 15 minutes of your target time. Trigger shot consists of lupron, which you can give yourself in your abdomen (subcutaneous like your other meds), and HCG which must be given intramuscularly. You get your husband to administer that one - he's pretty comfortable doing this - makes small prick jokes every time - and by now he has a scar on your buttock he can use to guide where the injection will go.
• The next day, exactly 12 hours later (and 24 hrs before procedure time) you give a second lupron shot. That night you take an antibiotic.
• You wake up on the day of the procedure and you can't eat 6 hours before or drink 2 hours before hand. Your hunger and nerves make you nauseated. You take more antibiotics at 2 hours beforehand and that makes you even more nauseated. You feel agitated and relieved it's almost over and nervous and excited. You show up at the clinic a half hour before your scheduled procedure. They take you back, have you change into a gown, cap and hospital socks, and then the nurse sets up an IV - sometimes they only have one vein to choose from because the other side has a lump in the vein from the previous procedure. A parade of medical professionals comes through. You answer the pre-surgical questions for the anesthesiologist and sign his forms, you confirm with the doctor and the lab technician that the plan is to retrieve, biopsy and freeze all. You sign their forms. The medical assistant drapes a blanket over your shoulders like a cape (to cover your backside where the gown is open) and walks you to the procedure room. They have you lay on the procedure table, scoot your bottom down to the line in the table where they can take away the lower portion of the table, which they do, then they lock some strange stirrups into place that support your calves and strap your legs to them. The doctor is scrubbing up at the sink and as she finishes her washing up, she comes over and inserts a speculum, and starts prepping you. Thankfully about this time, you start to feel the world growing fuzzy and you realize the anesthesiologist is pushing in the sedation drugs. Thank god.  You wake up as they are moving you back to the waiting area. Your husband is there. You ask him about a dozen times what time it is because you can't seem to hold onto the information. Maybe you doze off or maybe you are ready to be alert again. Sometimes the recovery nurse brings you a juice box. You're crampy and you find a little bit of blood on the sheet under you. The nurse lets you recover a bit and then asks you to use the bathroom before you go home. You slowly get dressed, and let your husband help you to the bathroom where you pee s l o w l y. You don't press your bladder and just let gravity handle it. Your belly hurts and you just want to go home and curl up with a heating pad. The nurse tells you how many eggs were recovered and then you are wheeled down to the parking lot in a wheelchair and you finally get home and curl up on the couch for the rest of the day. You take more antibiotics but you can finally eat something. 
• Over the next few days, you take it slow. You've gained about 4 or 5 pounds of water weight putting you at mild OHSS, and you know it's important to move, walk, etc to help with that. It's also exhausting. You hear from the clinic how many of your eggs were mature, how many fertilized and you wait to see how many will grow to the required 5-7 days when they can be biopsied. 
• You hear that the goal is about 15-20 eggs per cycle and you get less than 10 on average and only about 6-8 make embryos and only about 4-5 of those survive long enough to be biopsied.
• When the biopsies are tested, only about 2 in 10 have a normal number of chromosomes (the first step of genetic testing). Having abnormal chromosomes is the most common reason that a transfer "doesn't take" ie that an embryo can't make a baby, so it makes sense to run this test first. Still the attrition is rough. After passing the chromosome screen, the euploid ones go on for genetic testing for CCM. That's a roughly 50/50 shot, though in such a small sample size those ratios don't always hold perfectly. So for every 10 embryos you are able to make, maybe 1 will pass all hurdles. You wait weeks to find out the results of the genetic test only to find out that the testing company has been holding the results because you owe them more money (money insurance doesn't want to pay) and they haven't told you. You pay them and get the results. Then you wait another couple of weeks for the rest of the testing. 
• While waiting for results you heal from the procedure, finally getting back to normal life again. Your period starts and you begin another round. 

After 6 rounds of IVF we finally got word (during the middle of the 7th round) that we had two more embryos that had passed all hurdles, were chromosomally normal and did not have the CCM mutation. That brings our count of candidates to 3. We have been working toward 4 as you need 2 for every desired pregnancy (there's a roughly 60% chance of a tested embryo 'taking'.) We don't yet know what round 7 will yield, but as I'm sitting here waiting for them to be biopsied and tested, we have made the decision to move forward with a transfer. I'm nervous about it and really hope it works and also really hope to not have a baby at Christmas. I'm trying to not get my hopes too high and just wait and see.