The last few weeks have been a roller coaster to say the least. I’ve always been brutally honest here, and I don’t intend to stop now.
When I stopped Cabo in April, I knew it would be a shock for my body. I had lasted three and a half years on the drug, which isn’t typical. It’s noxious for the cancer, but it’s also noxious on your body as a whole. Some of the side effects I experienced while on drug will most likely be permanent, like the hypothyroidism. Some seem to be leveling out, like the high blood pressure.
But I somehow underestimated what else Cabo was keeping under control. HLRCC (hereditary leiomyomatosis and renal cell cancer) – the genetic disorder that started this whole wild party – is so rare and misunderstood that doctors still don’t have a full picture of how it affects a patient. And to be fair, most of what I’m about to share is conjecture on my doctors’ parts, but I think they’re definitely onto something.
See, HLRCC doesn’t just make you more susceptible to kidney tumors. Oh no! That would be too simple. It’s already been determined that it also causes noncancerous growths on the skin and uterine fibroids in females. Now, some doctors are realizing it also causes fibroids, also known as leiomyomas, and cysts elsewhere in the body.
Let me back up a bit.
I’ve had uterine fibroids since my mid-20s, pre-diagnosis. I started developing ovarian cysts around the time I was diagnosed. They’ve been consistently showing up on my CT scans all through my cancer journey. They, and my ovaries themselves, have fluctuated in size the whole time, occasionally causing searing pain.
A couple of months ago before the world collapsed, I had a trip to Louisiana booked to visit my grandparents. The night before I left, I checked myself into the ER because the pain had gotten bad enough that I was worried one of the cysts had burst. The ER ran tests and did some imaging to determine I have polycystic ovarian syndrome (PCOS) and that I didn’t have a ruptured cyst, but that I did need to check in with my OBGYN.
What’s another diagnosis, am I right? They gave me some morphine, I overslept and almost missed my flight to New Orleans, but thanks to TSA Precheck and some painkillers I filled back home, I was able to keep my plans and had a wonderful time.
So, after I got back to Vegas, the world collapses and getting to my OBGYN wasn’t high on my list of things to do. Plus, honestly, visiting the OBGYN with a ton of pregnant women in the waiting room isn’t exactly on any cancer survivor of childbearing age’s list of exciting, emotionally safe activities. So, I put it off a few weeks, and by the time I scheduled my appointment, my OBGYN wanted more imaging done. I utilized my frequent flyer points at the imaging office and did the tests. I go and see my OBGYN a week later, and she walks in the exam room with the furrowed brow she always has just for me.
“I really don’t know what’s going on with your ovaries.”
Comforting! What does this mean, Doc?
“They doubled in size from your scan on February 28 to this last scan. Not the cysts, your actual ovaries. And you have new cysts. I don’t think this is ovarian cancer, but I can’t rule it out.”
I swear to God, a second cancer diagnosis? I’m not that much of a martyr, y’all. Just take me back out and shoot me.
So, we discussed options and possibilities. Could it be recurrent kidney cancer? Maybe. Ovarian cancer? I mean, I don’t have the genetic marker for it, but I know getting diagnosed with one type of cancer isn’t a “get out of jail free” card for the other types. Just look at my mom – she had two types. Could it just be my body being weird? Possible.
I was remarkably calm to be casually tossing around cancer possibilities with my OBGYN. She ordered more tests and told me to talk to Dr. V at our prescheduled appointment later that week to see what he thought. It took me at least 45 minutes later to finally shed some tears and scream a bit.
In the meantime, I had an appointment with my podiatrist, because of course I have a podiatrist like every other 85 year old. I’d been having pain in the arch of my right foot and thought I’d perhaps torn a muscle with my quarantine workout routine. He examines it and goes, “Huh. Ever heard of leiomyomas?”
Insert groan and eye roll here. I now apparently have a freaking leiomyoma growing inside my foot.
See a pattern here? Cabo apparently wasn’t just keeping the cancer from growing. It’s anyone’s guess, but my doctors believe it was also keeping my body from doing what it does so excellently – growing extra, sometimes painful tissue I don’t need.
So back to the ovaries. Dr. V and I meet, and he says he doesn’t think it’s kidney cancer, but ovarian cancer could be a possibility. He looks at me and goes, “Why don’t you just take everything out? You, your OBGYN and I are all just going to keep worrying about this until you do. I mean, it means you’ll go into menopause in your early 30s, but…”
He stops because he sees the tears welling up in my eyes, coming perilously close to getting my mask wet. Another surgery? Another scar? Another reason to feel like a broken, mismatched woman of random organs, a jacked up science experiment?
“Okay. I’m leaving this up to your OBGYN. You two decide together what you think is best.”
A week later, the OBGYN and I are Zooming like old friends. I almost ask her if she wants some wine so we can do virtual happy hour, but then I remember it’s noon and, also, she’s my doctor. She is jubilant – it’s not cancer.
So what’s going on then? Well, it’s looking like my Cabo was likely keeping my PCOS relatively under control, not to mention, my circulation issues are causing what’s known as pelvic congestion syndrome. When I had surgery at UCLA, my primary tumor had grown so large that it had completely blocked my inferior vena cava, which despite its name, is the largest vein in the human body. Having it blocked is…a problem. A fatal one, actually. The only reason I lived long enough to see my surgery is my body built what’s known as collateral veins around the blockage to keep my blood circulating. When the surgeons at UCLA saw how extensive the blockage was while they were operating on me, they debated rebuilding the vein, but they ultimately determined that would be even more dangerous than removing the blocked portion of the vein and leaving the collaterals in place.
It was the right call, but it has left me with DVT and swelling in both of my legs, and now apparently, dilated veins and swelling in my pelvis, which is affecting my ovaries and also causing pain. I asked my OBGYN, “They weren’t expecting me to live this long, were they?” as she solemnly nodded affirmatively.
So what’s next? She’s giving me Lupron soon, an injection that should give my ovaries a break. We’re hoping it will calm them down some, give my body a chance to figure out what post-Cabo looks like, and help relieve some of the other PCOS symptoms I’ve been experiencing. If it works, she’ll put me on a long-term treatment regime. We’re in agreement that surgery is off the table for a multitude of reasons until I’m at least 40, unless an emergency happens in the meantime. Hopefully the universe is done playing games with me in that regard.
Doesn’t everyone collect complicated medical diagnoses like gold coins in a video game? No? Just me?
UCLA has already written four papers about me. Let’s see how many more can be written about this jacked up body of mine.