Hello again, party people! It’s been a while. I let myself get busy living, trying to lose myself in the minutiae of my little life.
I did. It was boring and exciting, like always.
But, man! Has there ever been some stuff going on! First, like so many others, I was devastated by Hurricane Irma. We took a direct hit, and while my family was unbelievably lucky in having minimal property damage, many friends, family, and neighbors were not. It was devastating on too many levels to go into. But one thing was the acute stress that it caused, and I mean deeply, scarring, life-changing stress. Everyone looked haunted for a couple of months afterward; that haggard, weary look that only comes with a collective adrenal fatigue. I did poorly.
Two weeks later, though, I was so, so, so grateful for the chance to road trip up to Oklahoma with one of my soul-sisters, the great and Notorious MAK! This lady, you guys! She surprised me by flying down to Ft. Myers just to drive up to Tulsa (by way of NOLA because we’re not dummies)! My soul needed this trip, even if my body wasn’t quite up to snuff. We ate and drank our fill (not as much as you’d expect, kids), and went to celebrate the stuff of life with friends and family in Tulsa for the Susan G. Komen Race For The Cure. Another amazing friend, the indomitable AJ, organized the Mayes County Mafiosa team and our core besties gathered together from near and far–Chicago, Pryor, Houston, OKC, you name it- to enjoy the bonds of sister (and brother-) hood and of lives well-lived because we are part of each other.
Friends are the best.
And I got to love on my amazing Grandmother, who lights up my life in a million ways and we will never tire of complaining about and bragging about each other to anyone who can stand to be around us. Shout out to that amazing lady!
But I couldn’t function by the time to back home. It was a real situation, even if I’d kind of pushed myself too hard. I wasn’t able to do it. Again MAK saved my ass! She was able to finagle a way to drive my sorry self back to FL and I flew her back to the 918. The fact that I was able to physically drive fewer than 5 hours of the return trip really scared me.
It didn’t go unnoticed at home, guys. I had become increasingly flaky, unable to concentrate or keep appointments, lost my planner, and was missing all kinds of things. The kids and I got sick in an endless loop for about 3 months, including influenza type A. So much fun! But I knew things weren’t going well, and my checkups were all approaching so it was going to be the usual scans and blood work, etc.
I also had this really embarrassing, itchy little cyst on my scalp that started out as a stupid pimple about a year and a half ago. It didn’t really heal right, and now and then would grow a bit, shed a little hair, and itch like it was sitting on a nerve. Since I’d rather cover it up than spend a couple of hundred dollars at the dermatologist, it didn’t seem like a big deal. It was getting bigger, though, so I thought I’d get it removed. My PA, Shannen, biopsies it, and wouldn’t you know that little f***er was breast cancer!
It is a 1/10,000,000 thing where it grew from the skin down, boring a hole through (essentially, not totally but you get the point) my skull, and into the top of the left frontal lobe of my brain. I knew I was something special, but……
Two days after Shannen and my dermatological team had to deliver the news that the biopsy was breast cancer I saw my oncologist. It turns out I’ve been suffering from migraines for a few months, but they came on slowly and with rounds of illness and sinus issues so I didn’t even recognize them for what they were. Ironically, this same week I experienced a new and dangerous type of migraine that was brought really bright. Like searing my eyes and my brain felt white. It turns out those are kind of dangerous, but in the moment I just thought I was stressed and the sun was hella bright. So I was sent for an emergency MRI on a Thursday evening. Friday at noon, my oncologist’s PA phoned to tell me that I have a cancerous mass in my brain. Oh, and it’s 3.7cm. Here’s a steroid prescription so you don’t have a seizure or a stroke. Don’t drive. That’s pretty much the call. Happy Friday, y’all!
Needless to say the weekend was pretty much hell on earth.
3.7cm is the size of a ping pong ball. I couldn’t stop thinking about a ping pong ball in my brain over my left eye. Brain pong. Through the hole in my head.
Tuesday I met with the radiation oncologist I’d consulted with before. Luckily my dad was there with me to help me remember to ask questions and argue my case for him to accept me as a patient. He almost didn’t because about a year ago I chose to not continue the oral chemo regimen my medical oncologist prescribed. That was a whole deal, which I don’t feel like going into. But the end result was that I put the brakes on things a year ago and Dr. Brown wasn’t interested in a patient who goes AMA. Can’t really blame him. But this is my brain, and that’s a horse of a different color.
Once he had a better understanding of my situation and a mitigating factors-and an agreement to follow his course of treatment to the letter-he prescribed a 14 cycle treatment of radiation to the brain. I’d lose hair. Permanently. It would kill the cancer. The bone would be given the opportunity to regrow, strengthen. I could avoid surgery. Obviously I was in. Dotted lines were signed.
Then I asked to see my scan, and he was stunned. How had they not shown me?! In 3 minutes, I was looking at the computer in his office and there wasn’t a ping pong of death about to explode over my eyeball! Yes, there’s cancer, but its not the horrible thing that the blunt phone all made me imagine. I am still wholly committed to the course of treatment, though. Just so we’re clear. He also recommended a few names should I choose to immediately find a new oncologist, as it was pretty obvious that mine was the wrong fit for me.
I called and started making appointments right away. Two more days followed and I was sitting with my oncologist and my husband, arguing with her and he PA over why I don’t ever get to view my scans in the office with them instead of just reviewing the reports, my poor husband about to lose his mind quietly and her pretty much kicking me out of the practice. I had an appointment to meet another doctor the next day, and my doc had her office manager print out my entire file and literally walk us across the hall to the new office to meet the office manager & PA of the other doctor. Talk about being floored! I made her agree that until I was accepted at the new practice, I would tentatively agree to her treatment plan but would notify them if and when things officially changed. Hey, even I know to hedge my bets & try not to burn bridges like I used to! But still. It added a layer of crisis to my crisis that was so unnecessary and felt like I was being completely railroaded.
I’d like to stop here and talk about something else. Now that there is some distance between me & the initial calamity, I can be really honest and blunt about the extreme trauma that I still feel about my time in treatment. I’m traumatized. I’ve spent the time since trying to heal my body of course, but also my spirit and my mind. I still shake at the idea of any more chemo, of more treatments. In some ways I am completely fearless, but it can still be a struggle to try to work through much of what happened. As it happens, I’m reaching out to a therapist as part of an integrative approach, but I’ve also spent a long time forcing myself to be honest and work on the hard things.
Ok, so the new team has taken me on as a patient and I have a new and improved treatment plan in place. OH! Oh! Another layer of difficulty-our health insurance provider, plan, pricing, deductibles, EVERYTHING changed on April first. Oh yes it did.
Did I mention that I ended up in the hospital for 2 days last week? No? Yep, there’s that, too.
I didn’t rest enough at all, and pushed myself Monday and Tuesday, even though I thought I was sick, because there was a science fair to finish preparing for, things needed immediate attention, and quite frankly my family was letting me do too much because it’s easy. It’s as simple as that. I didn’t slap them into shape and I brought it on myself.
Won’t happen again, I assure you!
I had a seizure in my sleep, resulting an a severely abraded cornea, which the ophthalmologist said almost looks like it was stuck to my pillowcase or rubbed against it enough to remove a layer of cornea. I can’t make this up, you know. Anyway, it obviously felt like molten lava, gave me another bright migraine, and my mother in law took me to the emergency room at the old hospital downtown, since it’s the only one that is set up for oncology. We had to get each thing under control-the eye, the migraine, the new pain that was spiking from the stress and pain, and the underlying infection that was already affecting me. 10 hours later I’d ha a CT to confirm that the insane swelling in my face wasn’t cancer spreading to soft tissues, my eyes were fully checked out and a ridiculously painful ointment applied, and fentanyl was my new friend. The next day I started a trial of oxycodone for pain management, so it was perfect that I was in the hospital to check for signs of reaction, since I’ve had a morphine reaction and we needed to be careful. I went home Friday and had radiation on the way. Oh, the swelling in my face isn’t an infection. I’m having several reactions to my steroid, so I’ve asked to switch to something else.
The weekend was pretty quiet. We did a lot of soul-searching, some talking, some crying. It’s been such a pivotal moment for my family, and in more ways than I want to count I think that’s for the best. As I’ve let a very few in on what has been going on in the past month, I didn’t tell anyone except the need-to-know about being in the hospital. Now I’ve begun calling in reinforcements to come help with meal planning, organization, and TLC. I’m calling on my tribe to surround me with love again. This means, you, too.
So, I am resting as much as possible. Dark room, because I’m pretty light and sound sensitive, trying to keep my head from pounding or just because I’m really wiped out. There is a new sense of hope, but also a sense of the preciousness of time and time spent as a commodity. I have no real expectations of what the next phase of life or treatment will really bring, and I don’t want to be asked. If things work, then I will be inordinately thrilled. If not, then we all knew that this is the deal, so it’s ok. Mostly I just want to continue being as happy as I can.
That’s all we want, isn’t it?
Let’s just be happy.
And holy shit, I have a hole in my head, y’all!
His name is Voldemort, by the way. Or little Voldey the Baldy.