The cyst that wasn’t a cyst, my little Voldemort, Voldemort the Baldy, saved my life. So did my irritation with him and desire to stop acting the part of Professor Quarrel, just like my vanity in wanting a tummy tuck and breast augmentation ultimately led to discovering that I had cancer in the first place. Think about how crazy that is for a moment. Let it sit and simmer, and then laugh! It’s ridiculous how the most unusual things will completely change; and not only our lives, but those of everyone we know in the most incredible of ways. Life is like that.
My older brother was under immense stress. Having recently begun a new career, he and his wife had just finished building their dream home, she had their first child, they moved the day after she got out of the hospital, and he got pneumonia. That’s Herculean for anyone. After several visits to the doctor and different emergency rooms around his city, after being told by one ER doctor to just suck it up, he discovered that he had a very rare cancer and died just shy of four months from his diagnosis. Like me, he was just incredibly unlucky in getting a non-genetic cancer. My point here is that our lives often change dramatically in ways we just can’t foresee. I miss him every day, but I wouldn’t be who I am or be able to see my own illness through the particular lens through which I gain my perspective without having gone through his loss. Life is what it is, nothing less or more. Learn to take the hardest punches to the gut. Have breakdowns. Rail against the injustice. Pick up the pieces. Fit them back together in a new way; handle with care. Keep going. That’s the secret.
So Voldemort saved my life. My brain tumor-just like this whole experience of cancer-has saved me.
How can a brain tumor save your life, Lexa?! You’re letting the brain tumor talk, or maybe it’s the radiation, but whatevs because you’ve lost it, sister. I’m
Nope! True story, my friend!
Here you go, down the rabbit hole (in my skull):
I don’t wish the four days between the call confirming a brain tumor, it’s size, location, and the possible side effects on anyone. They were the lowest point of this entire experience, easily. Lower than me asking my husband to just let me dies while in the throes of chemotherapy-induced suffering, which I thought really couldn’t be beat to be honest. Seeing my actual scan, however, was a godsend. Yes, there’s a brain tumor, but it isn’t a pin-pong ball of death ready to explode over my left eye. It’s more like a pool cover the dips into the water, so there’s immediate danger, but it’s fixable if you call the right person in to do the job. That’s what I did. I found the right team to do the job and we set to work.
Now that I’ve finished the fourteen round courses of ERBT (electron beam radiation therapy), the cancer cells will continue to die over the next 8 weeks or so. At the same time I am doing what I swore-SWORE like Scarlett O’Hara so help me God!-would never happen: I’m going to begin an indefinite course of very targeted chemotherapy, along with two other systemic treatments. One, Faslodex, I took once before shutting down the treatment plan my doctor had set up but that I hadn’t fully comprehended. It’s a very targeted hormone-receptor blocker that almost doubles the effectiveness of the Verzenio that I’ll be on. Combined, they were essentially tailor made for me, which is really exciting. The drug I rejected before was Ibrance, and it’s very promising, but something inside of me knew without a doubt that taking it was the wrong course of action almost exactly a year ago when it was prescribed. The final drug is one that I took for several months before, and it is an infusion that helps to rebuild bone tissue since most of my cancer is essentially a bone disease at this point. I’ll also have a fourteen dose course of radiation to my thoracic spine, targeting the vertebrae that are now pretty damaged by cancer, putting me at risk of fracture and, even more fun, paralysis, should my spinal column be damaged. Since I enjoy things like walking and breathing unassisted, I’ll take radiation, thank you ever so much!
At some point not too far down the road, I’ll do radiation to my hips, focusing on both femoral necks and balls, my tailbone, sacrum, and the branching out to the iliac wing. That’s the part of the hip that when we were skinny you could see in the front, hahaha! Anyway, the idea of pain relief alone is enough to have made me change my mind on all of this. I reached my pain threshold and take pills all day, which presents its own issues.
You’re probably reading this and asking yourself, ok, so what was the really awesome news? Why is she so excited? Oh, let me tell you!
On Monday of this week, my mother-in-law, Sue, took me to my appointment with my new medical oncologist. She takes a friend of hers to oncology appointments, and sometimes she takes her sister-in-law to her oncology appointments as well. She’s a great second set of ears and asks questions that I might not think of, even though I’ve been taking notes like a student at each visit. Remember, there are two types of oncologists on my team, a medical oncologist who specializes in systemic treatment like chemotherapy, and a radiological oncologist who specializes in radiation therapy. So Dr. De Souza is my chemo doc and Dr. Brown is my radiation doc. So we were there to see Dr. De Souza, who not only patiently answered all of my questions and addressed my concerns, but fully explained why she made a few tweaks to my plan. She and Dr. Brown had already consulted (wow, a team effort!) and they determined that the spinal lesions (you know, cancer in the vertebrae) were the most immediate concern, so I’d need to have spinal and pelvic MRIs to confirm, then begin radiation either concurrently or before the chemo and systemic therapies. The side effects are going to be overwhelming and awful for awhile, and spacing out at least part of it will definitely be a good idea. At the end of the appointment I asked the big question-what’s her best guess at a prognosis. I’m not expecting absolutes or promises, just an idea of what to reasonably expect.
Here’s what she said.
*If* everything goes fairly well, she thinks I can reasonable expect 2-2 1/2 years of non-progression. I’m not only not terminal right now, but the moment I am, if she thinks it’s a couple of years, a year, months, weeks, the moment she feels that there are no more therapies that will help, she will be honest with me and let me make my own choices. So TWO YEARS OF NON-PROGRESSION. Not two years to live. Two years of stasis, healing, LIVING. Then when it’s time, we’ll move on to whatever treatment is best at that point.
We hugged each other’s heads awkwardly because w were stunned.
Dr. De Souza teared up. We all hugged because that was the most direct, honest answer I’ve gotten in three years.
The next day I met with a physical therapist as part of Dr. De Souza’s whole body approach. We are setting up occupational and physical therapies. My grip is pretty bad, I drop things all day long, and my hands and fingers are going numb. Since I’m also having balance problems and only climb stairs when absolutely necessary, it’s pretty evident that I’m a fall risk, necessitating the physical therapy. I also got the info for a couple of counselors to talk to.
On Thursday I had two MRIs and two friends who came to help me clean out my room. Some of us have a junk drawer or a junk closet, I have my room. It’s the place I spend the most time but it’s also the catch-all for the entire family and the last place to get cleaned. They worked on it while I did my imaging and came home feeling like I’d just run a marathon. It was so humbling and I’m so very, very grateful for their help. Again, it’s like being able to breathe after being underwater, I have a sanctuary again! This morning (It’s Friday the Thirteenth, y’all!) I saw Dr. Brown, had another CT, and confirmed the areas for radiation. I also got 3 little, freckle-sized tattoos to help guide the machines, so that was interesting. Then I ran a couple of errands and came home to excited to get the rest I needed. My stepmom flew in from Ohio because I need to be mommed for awhile, and she need to do some momming & grandmomming, so it worked out just right, lol! Even though I got the all-clear to drive, I’ve discovered that it zaps my energy pretty quickly, so I’m keeping my trips short & sweet. A girlfriend sent us a fresh box meal that was not only delicious, but came at exactly the right moment, because I am still dealing with radiation to the brain side effects, and a couple of my sorority sisters are again stepping up to help prep some meals for the fam to freeze. I’m a few weeks, a group of local girlfriends that I haven’t gotten to see in ages are coming over to replenish, and one of them even delivered a Costco order to me, since I’m out of the delivery radius for the grocery delivery service I signed up for. A grocery gift card and Lyft gift cards were sent by other dear friends who knew that those were really important areas of concern for me. Asking for help and knowing specifically what is needed is so difficult, but also invaluable. I feel like you have all wrapped me in your love through your words, your willingness to just in and lend a hand, and most importantly by your friendship. And anyone who wants to clean and/or meal prep, YES! Please! I need to make a special calendar for this, so that it isn’t overwhelming for me but also so that plans can be made. That’s maybe best left to when it isn’t 4:30 in the morning, though…
Ok, so here we are with an aggressive treatment plan that is essentially the gift of life-extension. I have a new team of doctors who are all working a whole-body approach and who genuinely have my wishes and best interests at heart. And it all started because I got a one in 10,000,000, miracle of a crazy tumor that started on the skin, just in my hair line. Those are both extremely rare, btw. Then, the cancer slowly grew down, eating a hole (sort of, enough for me to call it that) through my skull, then into the top layers of my brain. Just as I became symptomatic it was diagnosed and this part of out Choose your Own Adventure began. That brain tumor saved my life@
Thank you, Voldemort. You did good, kid.