My uLMS Journey

February is National Cancer Prevention Month. In May 2021 I decided to get genetics testing, after it was found that members of my family had the CHEK2 gene mutation. This gene mutation increases risk for many cancers including breast, colorectal, thyroid, cervical and more.

I found out in August 2021 I do, in fact, have the same gene mutation. I began my cancer prevention journey then. What I didn’t know at that time was my breast cancer risk was at a sky high 68% lifetime risk. At that time it was assumed to be 48%. I prepared myself for a prophylactic mastectomy.

In meeting with specialists to prepare for the multiple surgeries required for a prophylactic mastectomy, my overall health came up. I was referred to a Gynecologist at University of Washington Medical Center, Dr. Licia Raymond. On my first visit with her, in February 2022, she did an ultrasound and found multiple fibroids and cysts within my uterus. I became a candidate for a full radical hysterectomy. I said let’s take out anything not screwed down.

So we pivoted our focus to this surgery in Spring 2022, with a plan to move forward with the mastectomy in Fall 2022. In the mean time, I began all of my cancer prevention care alongside waiting for the hysterectomy. My first mammogram, breast MRI, thyroid ultrasound, baseline bloodwork to watch for cancer markers and colonoscopy all happened in that first year. It felt like a whirlwind of appointments. I was scared but it felt good to be proactive.

My Gynecologist said I needed an endometrial biopsy prior to surgery. That happened in April 2022. We celebrated when those results came in – no cancer cells! What a relief. I got my surgery date of May 17, 2022. As an entrepreneur, I worked daily for months to prepare to be out of work for 3 to 4 weeks. Surgery day came. The Operating Room was taking forever. Sadly, I found out, the woman ahead of me had a very complicated surgery. Due to COVID restrictions, I was alone in a tiny triage “room” near the OR, as my surgery got delayed for 5+ hours. This was torture, as my anxiety got worse and worse.

My doctor finally came in, we reviewed the plan and they finished prepping me for surgery. I noticed they did not intend to take my ovaries. I insisted and we had a talk about needing hormones to start immediately following surgery. I signed an additional consent form to take my ovaries. Prior to surgery they asked me to state in my own words what we were doing. I definitely appreciate that they always do this with every procedure and surgery. I said surgery to remove my uterus, cervix, fallopian tubes, ovaries and appendix, and to repair an umbilical hernia I got from growing big babies.

They pushed the good meds and right before I fell asleep, apparently I educated the OR team about the importance of protecting the endangered Chinook salmon. Because of course I did.

Hours later I was waking up in Recovery. I was STARVING. I hadn’t eaten in about 24 hours at this point. Applesauce and saltine crackers never tasted so good. I was given the option to stay overnight or “go home”. Since surgery was in Seattle, we were staying at the Seattle Cancer Care Alliance housing. I opted to leave, mostly because I was so lonely and was missing my husband like crazy. He wasn’t allowed to come back still and it had been 15 hours since I was brought back to prep for surgery. He was still in the Waiting Room. Talk about a long day!

We didn’t get back to SCCA Housing until almost 11pm that night. I slept in a hospital chair that night, if you can call it sleep.

I could barely walk, was overwhelmed with pain but so relieved to have surgery (and horribly painful periods!) behind me. We headed home the next morning, May 18th.

Recovery was rough but I was finally feeling a bit more human a couple days later. My husband hadn’t left my side.

By Friday morning, May 20th, he was itching to get out of the house. He brought our daughter to school and made a quick trip to town. My mother-in-law was staying with us to help with the kids and my recovery.

What we didn’t know is we were about to get the phone call that would change our lives. It was a beautiful Spring morning. Sunshine was spilling through the windows and front door. Food Network had been on all morning. The phone rang. It was Dr. Licia.

Surgery went well, she’s checking on me, how’s my pain, am I staying hydrated, all the usual questions. “She is so nice,” I think to myself. Then, when the conversation should have been wrapping up, she said the dreaded phrase… “Do you have a moment to talk?” and I knew. It was cancer.

My mother-in-law helped me out of my chair and I went to my desk to grab a pen and paper. The world felt like it was spinning out of control. It felt like when you get off a rollercoaster and are super dizzy and not steady on your feet. She explained to me that they removed it all intact. In her 30+ years in her profession and thousands of patients, she’s never seen this form of cancer. It is that rare.

She spelled the name of my cancer to me, as I heard the word ‘leiomyosarcoma’ (lie-O-my-O-sarcoma) for the first time. She thanked me profusely for insisting they remove my ovaries. If they hadn’t, we would have been scheduling surgery to do that immediately. She told me they didn’t know if it had spread, but, they did know they had gotten the tumor with clear margins.

She told me she had no doubt that my hysterectomy saved my life. The tumor was hidden in the fibroid at the very top of my uterus. They never would have biopsied it. It would have grown out of control within months and by the time they would have found it, the cancer would have metastasized and it would have been too late. My uterus would have killed me.

The room is spinning. I am still writing everything down, somehow, like the true boss I am. But I feel like I am going to pass out.

Something about needing a CT and to meet my Oncologist immediately.

I will need CT scans the rest of my life. My brain isn’t computing. If they got this sarcoma thing, what? Why scans the rest of my life?

She explains this cancer is very recurrent and so I will need cancer surveillance forever. I’m crying now. My husband is gone still. At some point the phone call ended.

I called Brandon. I didn’t want to tell him over the phone. I asked where he was. He’s still 10 minutes away, so I tell him over the phone because he could tell something is wrong.

I go next door to tell my parents. My poor parents, my heart sank. My sister had gotten the “NED – No Evidence of Disease” weeks earlier. My poor sisters. We had all finally felt some relief from cancer after it scared the shit out of us for the last year and a half.

Oh my god, MY POOR KIDS! My mind is going a million miles a second.

My mom isn’t home, my dad is. I tell my dad and got that crushing look of utter and complete heartbreak from him, like I knew I would.

At this point he is so upset, I decide I have to call and tell my mom over the phone. I hug dad and go outside.

The sunshine is enveloping me as I shakily dial my mom. She was just getting to Safeway. She was as distraught as I was.

Then I make the next several calls to the people closest to me. My best friend lost someone very close and important to him to cancer. Making that call was the hardest, for sure.

Now we have an agreement I will text him updates. That is easiest for both of us.

Then to tell my kids. My son got home from his dad’s house that night. We waited and talked to both of them together. The soul-crushing experience of having to tell your children that you have cancer and there are unknowns is not anything I would wish upon any parent or any child. I remember we spent the evening together watching TV and I think I succeeded in not looking as terrified as I felt. I honestly am not sure. That entire day was a blur.

Fast forward to now, about 8.5 months and later. We’ve been through 4 CT scans, 1 PET scan, a liver MRI, a breast MRI, a liver biopsy, a skin biopsy, a lung and lymph node biopsy & bronchoscopy, countless blood draws, several EKGs, a thyroid ultrasound, multiple Oncology visits, and my regular cancer prevention annual visit.

Up next, more frequent CT scans, a trip for a second opinion to Stanford Medical, a Lung Function test, a sleep study and possible adjunctive therapies, including hormone blockers and there has been talk of a round of chemo to kill any cancer cells that may be hiding.

We also have now found out I have a lifelong systemic disease called sarcoidosis, that makes my cancer surveillance even more complex. I am showing possible bone involvement in 3 areas.

Thankfully my lungs and lymph nodes were determined to be sarcoidosis and not a LMS recurrence. Through my Facebook fan page, I have been able to connect with others who are on the hellacious journey of Leiomyosarcoma, either they themselves, or with someone they love. The statistics are staggering for uterine leiomyosarcoma patients. Anyone who understands or even does a simple google search about LMS knows that.

So this Cancer Prevention Month, I urge you to do what you can in your life to prevent cancer and to take care of your health. One spiteful and hateful person told me she was sorry I am unhealthy, as a response to my cancer. Mark that on the list of Ways To Get Blocked By Abby. So if you’re here to support and learn, I am so grateful for you. If you’re here for any other reason, I hope the Universe helps you heal whatever fucked up thing that made your heart that way.

Cancer, especially rare and invasive cancers, are enough of a battle for us warriors to take on.

Many many thanks to those supporting us on this journey. While there are still many unknowns and more hurry-up-and-wait moments ahead of us, what we do know is I am here and I am ready to take on whatever battles are ahead of me. This life is worth living.

Cancer can go walk a duck, as far as I am concerned.

If you would like to know more about genetics testing, visit color.com. Also, with how long my posts are becoming, I’ve decided to start this blog. Thanks for being here. I appreciate you.