Words I’m numb to: “This is an extremely unique case and will follow no set treatment plan.” You don’t say.
The surgeon seems like a fantastic guy. He is my kind of people (iykyk) and really loves his job. He is head of the board of surgeons with breast specialty and does a lot of teaching. His handwriting is perfect, and when I complimented said handwriting, he retorted with a quick, “Thank you. My surgeries are equally as perfect.” Even better, he approved MY WANTS for end goals in this disaster. He even laughed when asking me to promise not to chain saw my boobs off. (I’m impatient… I can admit this.)
As of now with the data currently collected, I’ve been staged at 1B. Great news when preparing to fight an aggressive monster. However. The depth of location of the cancer (1.3cm) and complexity of my lymph nodes requires a few more scans (just hurled again thinking about fucking MRIs…) and biopsies to confirm. If the cancer has spread to 1 or 2 lymphs, the staging will change most likely to 2B. If it’s in more lymphs or larger than they suspect, we’re in to stage 3. If it hasn’t spread to my lymphs or is only in 1 or 2, surgery will be first. If it’s spread beyond two lymphs, a round of chemo will be first, and then surgery, and then more of whatever might be needed. I really need surgery to happen first. So, I really need the ever-growing uncontrolled cells to calm the fuck down for a bit.
His nurse was great, too, and patient with my issues as the day progressed. While there, they decided to get me going on what they could, which turned into a navigator appointment, sent me off for genetic testing (sigh…*moves ice pack*), and then immediately off for a long ass MRI. I warned the doc that I would need valium for the MRI as the claustrophobia grows with every scan… and I’ve had quite a few in the past few years. They explained this would be a laying down MRI, so the claustrophobia might hit differently.
My navigator appointment was quick. It’s different when you’re partnered with all the local cancer organizations and all of them already know what you’re up against. She gave me a stellar binder and bag with the cancer center tree on it. AND a box full of cancer surprises – a blanket, hat, random stanky things, etc. Very kind for breast cancer patients. And off to genetic testing I went.
Great place. Nice people. As an adoptee, I’m interested to see what sort of odd genetic mutations I’ve got. Lots of questions about things I didn’t know about – again being that I am adopted. There wasn’t a whole lot to the appointment due to that fact, as typically people sit and build out their family trees and discuss all the medical shit people have, especially cancers. My kids will also get to have genetic testing- for free – due to mama’s rarities. All was well until it was blood draw time. I don’t know wtf happened really. The nurse felt rushed because my MRI appt was minutes away ALL the way out at Southwest Pkvw, maybe? My veins were blown multiple times, and she didn’t get enough blood. So, I’m going back tomorrow now to try again. Sitting here currently with a tennis ball sized swollen area with blown veins and lots bruising. Rock on.
Off to the MRI we went. Without the valium, because it wasn’t ready. But I thought, you can do this Jennifer. You NEED TO DO THIS JENNIFER. Damnit, Jennifer. The MRI tech was good with needles (somehow got the IV in on the first try, in the same broke ass arm the other lady just assaulted…) but was sort of shitty when it came to my body malfunctioning on their MRI table. Turns out the problem wasn’t the “claustrophobia,” as laying downward really does help with that. But instead, I was laying ON my stoma and ostomy, and directly on my stomach where the bed “bar” crossed. I don’t lay on my stomach. Haven’t for years. I can’t, because the pressure literally induces vomiting. With zero effort. A bad party trick. But the tech didn’t believe me. 3 image sets in (maybe ten minutes) I could no longer “gaurd” my abdominal muslces and I felt my stomach bail. The spasms started and I couldn’t move, trapped in the machine. I swallowed once per second until the image set was over, and they broke to come in for something. I begged them to pull me out enough to let me lift my head an inch to swallow better, or I was going to puke. By the time they got to me, it was too late. Massive gags, swallowing hurl, hurl sputters, me in tears apologizing 800 times a minute, and swearing at myself in between gags. I failed. The MRI was not completed. And I knew that meant rescheduling and doing it all over again. FML. And then I had a full body reaction, with full muscle spasms (CFS & autonomic upset) and the whole nine. The initial tech became frustrated with me, got snippy, and rushy. Thankfully, another tech appeared who comforted, supported, and was kind and returned me in pieces to my girls. Who are thankfully very used to my fall outs and know what to do. Problem is, how do I do the scan now? I can’t lay on my stomach – at ALL. I’m waiting to hear back from the surgeon for a plan, or a new plan with a different sort of scan. Because it turns out puke and MRIs don’t go well together. Huh. Who knew? The thought of an MRI or PET scan is far worse than thoughts of a double mastectomy to me….
I’ve got appointments scheduled with the plastic surgeon, another biopsy coming for my lymph nodes, check-ins with my other specialists, and a few more things my exhausted brain has forgotten. But I won’t be piling appointments after today’s BS. My body just can’t take it, and I was foolish to really think I would survive that MRI today. One appointment, one day at a time. I do wish people understood CFS & autonomic hell a bit more in medical settings.
Until the next update…