Rebecca’s Story

Site created on September 13, 2022

In April of this year I had a 9-week miscarriage. After two D&Cs to remove the miscarriage, my hCg levels continued to climb rather than normalize, and in September, I was diagnosed with Gestational Trophoblastic Disease (GTD), most likely a result of a partial molar pregnancy. I am undergoing single-drug chemotherapy for 8 weeks. 

Newest Update

Journal entry by Rebecca Longenecker

Finally on the final stretch here after completing surgery yesterday! It's been a hard month, but I'm finally starting to feel the excitement of being done with all my treatment. My final round of chemo resulted in absolutely epic mouth sores along with the usual nausea and fatigue. Luckily I was able to fight through the pain and get enough food and water down to avoid going to the ER. My mouth was so swollen during days 6-10 that I couldn't get a toothbrush or even a qui-tip in my mouth to clean. I was only able to use the salt and baking soda mouthwash, which I figured was doing the job since I was only eating mashed potatoes, soup, and scrambled eggs. But when the swelling finally subsided enough to get in there, I found all kinds of treasures. Eek!

Once I was able to start cleaning, things did improve, but the recovery took much longer than previous rounds. Even two weeks out from the last treatment, my mouth still wasn't fully recovered, though I did venture out from the mashed potato menu a bit. When I had my labs done last Monday the 21st, my white blood cell count was still well below normal. I was afraid that would mean postponing surgery, but they did a draw in pre-op to see if my numbers were back up, and they looked fine. 

Surgery went really well! I was nervous for several reasons. When I went under general anesthesia for my D&C back in June, I woke up with a lot of chest pain and trouble breathing. My oncologist thought it was likely a reaction to a fluid that they had used in the uterus, which can sometimes get into the blood stream and end up in the lungs. But I still felt dubious about going under anesthesia again. I was also worried that I would wake up and learn that they had to take my ovary out or that the cyst was cancerous and that I'd need to get back into chemo. But everything went smoothly!

The whole process is absolutely fascinating to me. Dr. Bondurant said that the cyst actually grows inside the ovary (I had been picturing it hanging onto the outside of it), so she had to cut open the ovary to remove the cyst. The ovary will actually mend itself back together after being cut open. Aren't our bodies amazing?

The cyst itself was a little over 6cm, which is about the size of an egg or a lime. A normal ovary is only 2cm, about the size of an almond. The type of cyst I had removed is called a dermoid cyst or a "teratoma," which froms from the Greek meaning "monstrous tumor." It develops from germ cells as your body is forming in utero. A small company of cells breaks off and grows over a person's lifetime developing all the layers of skin and growing skin, hair, fat, muscle, and sometimes even TEETH!

I wanted to see what was inside mine, so I asked Dr. Bondurant to take a picture. She said should would try to remember to take one, but warned me it was likely just fluid. I felt a little disappointed at the idea that there wouldn't be anything cool inside, but my cyst did NOT disappoint. I've attached a picture for those of you who are interested. There was a lot of hair, a section of skin with hair growing out of it, also bone, and fat. There was something else in there that my Mom couldn't make out of the phone when Dr. Bondurant called to say that the surgery was over, but Dr. B and the pathologist who was there said they had never seen it in a dermoid cyst before. I'm excited to find out what it was at my follow up appointment on December 15th.  

More about the surgery: they use CO2 gas to inflate the abdomen so that they have room for their instruments and the camera, and while they try to deflate you as much as possible before stitching you back up, there is inevitably some gas left behind. I asked Dr. Bondurant how the body gets rid of the gas, and she said it's absorbed through the cells, carried back to the heart and deposited in the lungs to be exhaled the same way we dispose of CO2 through normal respiration. It take a few days, and that's definitely one of the more uncomfortable asks of this recovery so far. Also avoiding laughing and coughing has been a bit difficult. Every time I try to clear my throat I feel like the stitches in my belly button are popping. Yikes! Also when I get up or change the position that I'm in, the gas moves around and causes shoulder pain of all things. That should clear up in the next 48hrs, and I'm looking forward to it. But overall I would take this surgery every day of the week over chemo. 

In two weeks I have a follow up appointment with Dr. Bondurant to see how I'm doing post-surgery and I also have labs to check that my hCg level is staying at zero. I'll continue to have monthly labs for the next year to make sure there's no recurrence of the GTN (not-cancer cancer). It really does (finally) feels like the end of the whole saga, and I'm starting to allow myself to experience some of my emotions about what I've been through. Even with the pain and anxiety I've survived these past 9 months, I continue to be so grateful for everyone who has sent me a card, a text, a package in the meal; for amazing care from so many doctors, nurses, and hospital staff; and for all the love and prayers coming at me from across the country and the world. 

Thanks again to everyone who has helped me through this past month especially! To Jake who held me while I cried through my mouth sores and worked so hard staying on top of chores at home and getting his drawings released at work that he relapsed into old concussion symptoms; to my Mom who came out for my last round of chemo and then came back to Seattle for my surgery to give Jake a break; to Jeni and Cheryl for taking the dogs out for us, bringing meals over, and gifting me with a homemade Christmas wreath the day before surgery! XOXO to all of you!


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