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Monday, November 30, 2020

I finally had that surgery!

 You probably know I have been pretty miserable for a long time thanks to a large mass in my uterus. 

It all started when I ran a really bad race and couldn't put my finger on what went wrong. My friend and kick-ass runner Paige suggested I check an anemia panel, and bingo - I was not well at all. 

Things only got worse, and I realized that my "bad periods" were clinical hemorrhages, ha. In fact, I was losing so much blood that I couldn't keep up with production even of platelets, which compounded matters as I was bleeding internally and was covered in bruises. 

I finally insisted on an ultrasound and this weird mass showed up. No one could tell what exactly it was, but there was always a concern for a leiomyosarcoma, which is a dire diagnosis. My symptoms were like it was a bad fibroid, though.

I saw a surgeon and she read my US as either a carcinoma or a large polyp. Either way, I needed surgery. She scheduled me for surgery and a biopsy.

LOL for a million days, I didn't have surgery because I found out IN THE OR that I was pregnant! Biggest shock or my life and seriously, my doctor still insists it was not physically possible and that I am living proof God exists. She also jokes that she's the best doctor ever because she got me to stop bleeding without surgery. Haha. (She's not my doctor now because I chose to do my prenatal care closer to home, but I work with her still so we still talk!)

There were a ton of scares about this mass during pregnancy, and oh so many appointments, but really, it was all fine. Except during delivery. That did NOT go well. Despite predictions that the mass would not interfere with delivery, oh it did. The baby was fine - he was always fine, never in any distress or danger - but I almost died after he was delivered. But it's kind of too gruesome for a blog so if you REALLY want to know you can message me ;-)

Recovering with delicious coffee a
friend brought the day after surgery
And then, to my complete disgust, my symptoms came right back after the baby was born. I was doing ok as far as blood work went, because you generally have nice robust RBCs after childbirth, and I could tell. The pain and bleeding were bad, but not terrible, and although I saw a few specialists over the spring and summer, I opted to delay treatment. The issue always was that perfusion to the mass was so extensive that I could hemorrhage uncontrollably during surgery. 


However, that rosy outlook changed when suddenly symptoms got very, very bad. Blood work confirmed it was surgery soon or a transfusion. Amazingly, I had already taken off work for vacation, so I just converted that to a sick day and got added to the schedule! My doctor ended up combining two procedures: one that cuts off blood supply that is usually used for polyps, and then a regular morcellation such as is done for fibroids. I had some complicating factors and about a 25% chance that she'd need to convert the procedure to a hysterectomy, but actually the surgery went very well, blood loss was not as bad as expected, and my recovery has been astonishingly easy. I haven't gotten the pathology back on the mass yet, but I assume it's just a very large (larger than a softball, actually, and my doctor estimated several pounds) benign growth or fibroid or something. I will probably need a hysterectomy later, but for now I am already feeling a million times better. 

And that, friends, is the last chapter in the crazy story of how I felt like crap and ended up with a baby.

*Update*: I actually just got the path back and unfortunately it is inconclusive. It is classified as "cellular leiomyoma", which is benign, but two pathologists are concerned for a leiomyosarcoma, which is the type of aggressive cancer that the mass was suspicious for on my pregnancy ultrasounds. My doctor consulted with gynecology-oncology and the plan is ultrasounds every six months; at the first sign of any returning growth I'll have a hysterectomy immediately. I'm not happy that this is still hanging over my head! 



3 comments:

  1. Ugh, I do not like that update, Grace! I was hoping that the pathology report would be more reassuring... Gah, you have been through a lot. I am glad you avoided a transfusion and that the recovery has gone well so far. I'm glad you were able to put the hysterectomy for a bit and it sounds like you are in good hands between the GYN/Oncologist. But UGH. I'll be thinking of you! You've been on my mind, hence the email to you last week! That's the one downside of being off social media - I wonder about people when I can't see their posts!

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  2. You are always so brave and string, Grace! I have followed younger years but never posted. I'm so glad your baby boy is healthy and it's wonderful how he has entered your life!! It sounds like you are in good hands medically. Continuously amazed and impressed with you!

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  3. Yes, I can imagine that you don't want it hanging over your head. But at least you are feeling better now. And thank goodness you survived childbirth. A miracle baby and a miracle you survived. Please keep us posted. I hope you don't have to have a hysterectomy but you are really strong and will get through whatever is thrown at you.

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