Six Months Post-Hysterectomy

It’s been almost exactly six months since I had my hysterectomy. I don’t know what I was expecting to feel once I physically healed from surgery, but somehow this outcome surprised me… I didn’t realize how much certain things affected me until they were gone.

Bits of Progress Towards a Maybe-Baby

I am now almost half way through my recovery period from my hysterectomy. And tomorrow night Malcolm and I will hopefully be sleeping better on a new mattress. I really hope that the new mattress will help us both to sleep better and to feel better.

In terms of my recovery, I’m doing pretty good. Some days are better than others and a few days ago I was in the shower and tilted my head back with both hands above my head, ready to rinse the conditioner out of my hair, and something about that movement cause a slicing feeling to the left of my belly button and down to my pelvis. I ended up doubled over in pain and Malcolm came in to help me to the bed, soap in my eyes, conditioner in my hair and soaking wet. I lay there for about 20 minutes getting an unintentional deep condition on my hair that actually left it nice and wavy the next day. I was able to get back in the shower and finish getting clean, and I was much more careful about how I moved.

For the most part I feel no pain anymore, just occasionally I’ll get twinges that remind me that my body is still healing and I have been having pretty much daily spotting. An odd piece of recovery that I was not expecting is that I have been spending a lot of time thinking about Lily’s birth. At first I couldn’t figure out why, but I think I get it now. Our brains are built for pattern recognition and grouping like with like. The spotting from this surgery is very similar to what I experienced for three months after we lost Lily (that time it was from retained placenta). Lily was the start of my story as a vessel of new life and my hysterectomy ended that story. So my brain is processing both book-ends and the similarities in them.

But my life isn’t just that one story, is an anthology! And in a type of poetic symmetry, just as that story ends the next is ramping up.

While I have been recovering, Amber and Dan and Malcolm and I have all been making small steps closer to our maybe-baby. I was tempted to write “closer to starting our surrogacy journey” but I think it’s safe to say that we have already started that journey.

Having a Hysterectomy

It seems weird that the next logical stage in mine and Malcolm’s journey to having a living child was for me to have my uterus removed, but here we are.

I am so thankful that I had a year to prepare for this. A year to come to terms with the reality that I will never feel the movement of new life within me again. A year to come to terms with no more periods… A year of cramping and spotting and breakthrough bleeding to really hit home how nice it will be to not have periods!

A Hurry-up and Wait Kind of Week

After my mom’s passing I was granted a one week extension on my placement for school. So while the rest of my cohort started summer vacation a week ago, my last day was Thursday. I had a lot of fun with my project, a manual for a emotions awareness group that I created. Monday and Tuesday were a scramble to get everything done for my final paper, and final meeting with my mentors and all the final things I needed to get my final grade.

For my project I also made samples of mindfulness activities that end the group sessions

My final meeting went very well. Both of my supervisors were very proud of what I was able to accomplish and had only kind things to say to me and about me. My college supervisor nominated my project as a model paper to be used as an example for future years. So, yeah, I feel pretty good about that!

I had a half day at placement on Thursday which gave me time to say some goodbyes. Then when I got home, Malcolm and I went straight into a call with Dr M2. Mostly it was a summary of more costs associated with surrogacy. Some of them we were aware of, and some of them we weren’t (I am working on a post about the financial side of surrogacy. Hopefully it will be done soon). We also discussed next steps and at this point Amber and Dan will be having their first appointment at the clinic at the start of August and on mine and Malcolm’s side we are in a holding pattern for the time being.

Eventually we will need to do extensive infectious disease screening and more detailed genetic screening than we have had before… We could start it now, but it won’t really do much to expedite the process and we will just have to do it again later. So we’re going to wait.

Since I didn’t have a hysterectomy date yet, Dr M2 suggested that I reach out to my surgeon’s office again and so I called Dr B’s office on Friday. Dr B’s assistant said that they aren’t getting much OR time because of the bottleneck created by COVID. I told her that I’m overdue for my next biopsy and that I have had some intermittent bleeding with the IUD in and I was concerned the hyperplasia might be back. She said “Oh, okay, lets see” and told me she was going to look at my file, a couple of clicks later she offered me August 11th as my surgery date and asked me if that was okay. In my head I was like “nope. Not ideal. I got plans on the 14th and I won’t be recovered enough to return to school at the start of September” but out loud I said “Yeah, I can make that work”.

The assistant then provided me with a bunch of info that I quickly scribbled on a piece of paper and she asked me if I had any questions. My only question at the time was how long would the hysterectomy take? She told me that the surgery itself would be about three hours, but I’d have about two hours of pre-op time and another two hours post-op. She also let me know that I was allowed to have one person there as a support and I said that Malcolm would be there without even saying a word to him about it first. Once he came into the hospital with me he would not be allowed to leave at all until he left with me and she did not know if they will let him into the recovery room.

I got off the phone and immediately messaged Malcolm, and my sisters, Amber… And then started spiralling… what am I going to do about my 14-week placement? I don’t want to miss out on that real world experience and just do a lit review. How am I going to make up three weeks of Precious placement time to catch up with my classmates if I do get to go on placement? Can I recover from this surgery in four weeks instead of six?

I also started to worry about the pain. I remembered how much the TAC surgery hurt and this surgery is likely going to hurt more. How am I going to get in and out of bed without engaging my abdominal muscles? I suck at bed rest and “taking it easy”… sigh…

Malcolm came out of his office and sat with me in our bedroom and I have to say, I took a good bit of time to cry and talk and cry and process and cry. The reality is that I have had a year to prepare and to accept that this surgery is necessary. I know that this is what I need to do for my health and my safety. It’s a lot easier to accept and be okay with something when it’s a far off someday eventually and then when it’s suddenly six weeks away, that’s a different thing all together!

What about all the scary ways this could go wrong? What if they screw up? what if I bleed out? What if they have to remove my ovaries too? What if there’s cancer there and I have to do chemo and radiation? What if… what if… what if??

Here’s the thing. I can be scared. I can be worried, and I can know that this is the right thing to do at the same time. I know that whatever the outcome, I can face it. It’s amazing what a person can do when there’s no other option than to do it, and this is the only next step for me on this journey.

If they get in the and they have to take my ovaries, then that’s what they have to do and I’ll be okay. If they find cancer and I have to do chemo and radiation, then that’s what I’m going to do. I have to hope though that the surgery will go as planned, that my uterus, fallopian tubes, and cervix will go, but my ovaries will stay and it will be a textbook easy procedure.

I will try my best to follow the restrictions for my six week recovery… I’ll find ways to keep myself busy.

I reached out to the coordinator for my program and she’s on vacation until August 30th. I chatted with some friends and they suggested another staff member I could reach out to and I have sent her an email. I hope that we can find a solution that allows me to have an in-person placement and lists me graduate with my cohort. If that’s not the case, that’s not the case and it will be okay. Honestly, doing a lit review would make it easier to do cycle monitoring and doctor’s appointments in Ottawa of we get to do our OHIP funded cycle this fall. It could be a nightmare trying to schedule that around placement hours.

I also rescheduled my plans for the 14th. My bestie and I will be getting together on July 9 instead.

It’s all going to be okay. And right now I just gotta wait until August.

You can also follow our surrogacy journey on instagram @operation.babyspaceship

The Start of Our Surrogacy Journey

I am writing this on January 6, 2021, but I don’t know when I will actually publish it. This is not just my story. This is also my husband’s story, our family’s story. And there are other players that I need to talk to before I publicly share their parts of our story. If you’re reading this, I have probably gotten all the permissions I need and Malcolm and I are at the point of being comfortable with sharing at least the start of our story with the world.

Recurrent Endometrial Hyperplasia with Atypia

It has taken me a long time to be able to write this because I had a lot to process and to come to terms with. It has been a long road to some form of acceptance and I know that I have a long way to go, but I’m trying and I’m working on it. Because it’s been such a long road, a lot of the details are a bit fuzzy but I know I can give the broad strokes.

Where is my rainbow?

A baby born after a loss is often times called a Rainbow Baby, because after the storm comes the rainbow. We had a name picked out for our rainbow baby. We figured it would be a girl since both of our losses were girls; we would name our rainbow daughter Iris Willow. Iris means rainbow. I even have a coming home outfit that I bought two years ago specifically for Iris.

But here’s the thing… Not all storms end with a rainbow. Sometimes when the storm passes, the sky is empty.

We lost Lily on November 7, 2015, and it didn’t take long before we were ready to try again. Once we were given the all clear, it took two cycles with the fertility clinic to conceive Anika. We lost Anika on September 17, 2016. Since then it’s been a struggle… Questioning, researching, blood tests, biopsies, surgery, more procedures, diagnoses, more setbacks… Finally at the start of January 2019 we were ready to try again for our rainbow. We had a plan to do four cycles since that was twice as long as it took for us to conceive both Lily and Anika. After four cycles we would be done. We needed an end point for this journey. We know that because of the pre-cancerous hyperplasia, a hysterectomy would follow whether the fertility treatments proved successful or not.

Right from the start my prayer was that we would either have a safe and healthy pregnancy which resulted in a healthy child we could raise to adulthood or that nothing would happen. I knew I wanted to avoid another loss at all costs… I was tempted to write here that I couldn’t handle another loss, but I know that that isn’t entirely true; you do what you have to do… Whether you think you can or not.

From day one, part of my treatment plan has been cycle monitoring, that means blood tests and ultrasounds every 2-3 days. This is important because we can make sure that I have a dominant follicle and that I don’t have too many, since pregnancies with multiples (especially with a transabdominal cerclage) carry more risks. But weeks upon weeks of cycle monitoring was hard on my body, especially since my left ovary is sitting behind my uterus making it hard to get clear images of it without a lot of pressure. I sometimes felt cramping and discomfort throughout the rest of the day.

Starting in February, I did my first round at the highest dose of letrozole. This was the dose that was successful at giving us Anika. This time around, nothing happened. I ended up having to induce a period after three weeks of waiting for follicular development with nothing happening. I decided that that didn’t count as a cycle since I didn’t ovulate. After inducing a period, I started another round of letrozole at the highest dose and again after three weeks nothing at all happened. We met with Doctor M2 and she said the next choice was to do injections. Malcolm mentioned that we were kind of hoping for a clear path forward: a clear “this will work” or “it’s best if you stop now” kind of deal. Dr. M2 said that there are so many options and that most people can get pregnant with enough persistence and the right intervention and that while she wouldn’t push us to go further than we were willing, she would never tell us to stop.

When we were trying for Lily and for Anika, we had decided that due to the price and the invasiveness, we weren’t willing to do injections. This time we decided to give injections a try. We knew that we had a trip to Florida coming up and that the cycle monitoring part of the clinic closes in the summer, so we wanted to give this the best chance possible in the time we had.

The gonal-F, which is the injectable medication I used, costs just over $1/unit. And I was taking between 50 and 100 units a day while I was on it. Every day between 4-6pm Malcolm would inject the needle into my stomach. After upping the dose three times with no changes, we had reached the maximum we were willing to spend, and we had hit the end of the time available to us for cycle monitoring. I got a call from the fertility nurse that day to let me know that there was still no change and that Dr M2 was offering us the choice to cancel the cycle or to up the dose again. I felt a sense of calm as I explained that we were done and that we would be cancelling the cycle.

I got a call from Dr M2 the next day to check in on me and how I was doing after deciding to scrap this cycle and stop treatment. I explained to her that we had reached the limit of what we were comfortable doing especially given that we would be heading to Florida the next week. Dr M2 was understanding and supportive and wished us well on our trip and suggested we touch base after we got back because the whole pre-cancer issue is still a potential risk.

In the first few days after stopping treatment I felt immense relief and calm. I was so happy to not have to do the ultrasounds and blood tests for cycle monitoring and to be done with the injections! I felt less like a human pin cushion, and more like a human! I had so much to look forward to and Malcolm and Luna were such amazing comforts.

We were on our way to drop Luna off at my sister Becky and brother in law Denis’s house, (they would be taking care of her while we were in Florida) and I was discussing with Malcolm the different kinds of support I get from the women in my online support groups, in one group they were all telling me that I have made such an impact on so many women and that they hope that I find and maintain a sense of peace throughout this transition, in the other one they were telling me not to give up and to discuss my situation with another doctor, and to go on this fertility diet or that one, and that there are so many options without giving up. That’s when the water works started for the first time since making the decision to stop. They didn’t see stopping as a viable option, they didn’t see how anyone could be happy when they were a loss-mama without a rainbow baby. It made me feel broken and upset that I might have to explain again and again that I chose to stop. I chose to see the good in my life and find happiness without living children.

The trip to Florida was perfectly timed. It gave Malcolm and I a chance to reconnect, to remember the magic of life and shared experiences. We went to Florida on our honeymoon, this time we shared the experience with my nephew Jordan and my niece Tash. Malcolm and I took an air-boat ride through the Everglades with one of his friends and his family, and I even got to hold an alligator! With Jordan and Tash, we went to the Wizarding World of Harry Potter, we went to Disney City Walk. I loved watching Tash and Jordan enjoy and experience Diagon Alley and Hogsmeade and Tash and I used our wands to do spells around the park. We had several other adventures as well including a unique view of the city from the observation wheel at Icon Park and driving through flash flood warnings. The daily thunderstorms were fun, and we had a couple of ducks that we named Chad and Shirley who had made their nest right next to our covered porch. It was so good to experience that trip knowing that what I have is so good. I have such an amazing family, both the ones who were on the trip with me and the ones back home. I have an amazing husband. There is joy here. There is joy in my life and in my heart. Lily and Anika are with me always and that’s not a bad thing. I can talk about them without crying, I can remember them and love them and be okay. I can make memories with the people I love and move forward.

We are back from Florida now. Reunited with our puppy, and back to life as we know it. It feels good to not be taking pills or injections. It feels good to know I don’t have to get up early and get blood drawn and ultrasounds done. It feels good to let my hormones get back to their normal and I feel hopeful that without all the added pressures and stressors that I’ll be able to return to living a more healthy life at a more healthy weight.

I know that waves of grief will come. I know that I will weep for what I have lost and what will never be. But on the whole, I feel whole.

I don’t have a rainbow baby, and I won’t have a rainbow baby. But I’m also not still in the storm. There will always be a hole where my children should be, but that doesn’t make me incomplete. I have a rainbow husband. I have a rainbow dog. I have a rainbow family. I have a rainbow education. I have a rainbow life.

Endometrial Hyperplasia, 3 Month Follow-up and Onward

It has taken me a long time to write this post because I wanted to be able to tell the whole story at once and then things got a bit complicated, and then I needed time to process.

If you’re not caught up on my journey with complex atypical endometrial hyperplasia, you can click here for when we found the polyp, click here for how they removed the polyp and other stuff from my uterus without hurting my TAC, you can click here for my diagnosis, and click here for my experiences midway through treatment

Feeling Alone with Endometrial Hyperplasia

I am not medical. I never had aspirations of being a doctor, a nurse, or a vet or anything like that. I do like understanding what’s going on with my body. When I was diagnosed with PCOS in 2010, I turned to the internet for information and even back then I found plenty of articles and websites devoted to helping women with that diagnosis, and understanding what potential complications it carried with it. Years later I found Facebook support groups that I joined, there were plenty to choose from and I joined a bunch and left some because of drama, or too many differences of opinion, and some I stayed in because of the connections I made and the value I felt it added and that I could add to the group.

Well, it’s not cancer… It’s Complex Atypical Endometrial Hyperplasia

I’d be lying if I said I didn’t cry at least once a day for the first week after my doctor’s appointment on Monday, September 10th. I’d be lying if I said the results of the pathology on my polyp didn’t freak me out. I would also be lying if I said that this is hopeless… It’s not.