It’s been a while since I last gave you all an update. Yes, I’ve talked in snippets here and there about current treatments and meds and issues the meds are causing. However, I thought I’d share in-depth about what’s going on with me, in case some of you or your family members are going through similar experiences.

Remember, last year at the end of July, after having problems with pains in my side and back, I had an ex-ray, which led to a CT with contrast, which led to my diagnosis of Stage IV Endometrial/Mullerian Cancer. My CA-125 Cancer Antigen Test was at 1100—which is really bad. 38 and below is normal. When my dd and I saw the pictures from the CT, where the doctor went through many images to show us the bright Christmas-like lights that lit up what looked like my entire abdomen, my oncologist’s expression told me he thought I was fucked.

Cutting it all out surgically was not an option. Chemo might give me more time. I heard months to a year without it, maybe as many as three with it, but there was little hope for remission, only hope for maintenance, for a while.

It was all so grim. We went home with appointments set for chemo to begin within a couple of weeks. At first, we did shed some tears and called family. That’s all the wallowing I would allow. So, I had an expiration date. I had a path forward to improve my longevity. Even a few extra months would be worth it. From then on, my internal mantra was, “Fuck it. I’m still here.”

What followed was six chemo treatments, one every six weeks, with tons of nasty side effects (hair loss—which was no biggie, extreme fatigue, diarrhea, muscle aches, foot neuropathy, insomnia). But I endured the six treatments; some patients’ bodies can’t take it, but like my dd keeps saying, “I’m a boss.”

When it was over, my doctor ordered an MRI and another CT with contrast. When we reviewed the scans, that blanket of Christmas lights was gone. I had a glimmer of color in my uterus, but those dozens and dozens of tumors were gone.

Surgery was now possible. I underwent a complete, radical hysterectomy and the removal of my omentum (a layer of tissue that supports the organs in the abdomen) on April 1st.

Recovery was a bitch, but I was only bedridden for a couple of weeks before, with the help of my lift chair, I was puttering around again.

My CA-125 Cancer Antigen test was reading a low and normal 15. My oncologist said I was “near remission” and that we’d begin immunotherapy for maintenance.

I began a treatment plan of Ketruda infusions, every three weeks, plus a daily dose of an immunotherapy/cancer drug called Lenvima.

Lenvima kicked my ass harder than my 5-hour infusions of that chemo-cocktail I originally endured. We played with taking Lenvima every other day to lessen the side effects, but fatigue and diarrhea continued to plague me. I took insomnia pills and pain pills to sleep. However, the half-dose wasn’t kicking the cancer. My last antigen test was at 155, plus I was plagued with all these side effects. Still, to fight the cancer building in my body, I went back to daily doses of Lenvima. Then, it felt like some new, awful thing was tearing down my body every day. I really felt like Lenvima was killing me slowly. Here’s the list of what I put up with:

Blood pressure — It rose from an average of 135 to an average of 165 with spikes as high as 200.Extreme fatigueDiarrheaExtreme joint and muscle pain, especially in my hips and thighs. I had to use my arms to push myself out of chairs because my lower body was so weak.BreathlessnessVertigoHand-foot syndrome — My palms were a fiery read with blisters beginning to form under the skin.Rashes on feet and calves — It looked like chigger bites; not itchy, but another mysterious symptom of something going wrong.Blurred vision

I think that’s it. It was enough. By the time the hand-foot problem emerged, my doctor had me stop using Lenvima altogether.

Ten days after cutting Lenvima, I was springing out of chairs, and my blood pressure lowered. The other symptoms have been slowly fading away. I feel better, but I know microscopic cancer cells are roaming my body, looking for a place to assemble to form new tumors. So, we’re in the experimental meds stage of my treatment.

I’m now on a hormone blocker that’s usually only prescribed for breast cancer patients. We’ll see how that goes. If the cancer continues its upward trend, we’ll reconsider more chemo and new medicines. I’m feeling stronger and more determined every day. Dammit, I’m still here.

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