I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.
It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.
As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)
PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo
I've been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I've had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others - most have clearly defined borders, mine is diffuse, it's infiltrated, it's intertwined with healthy brain tissue, it's messy, complicated, and dangerous. With a brain surgery, I could die - anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it?
Here's a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It's a pretty big deal.
This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we've conducted, there are several supplements that could also cure me, however it's exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I'm just getting started with the supplements, I'm taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they're time dependent. I constantly have to keep on my game, up on my schedule, and it's exhausting. If I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.
It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.
It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.
I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.
Ugh....why is our health care so confusing?!?! Why is it that they'll pay for THAT but not THIS, and sometimes they'll cover 80% and other times nothing. On a whim, I called my insurance company to make sure that I didn't need a pre-authorization, and I asked what they would cover. Answer: I would have to pay the first $500, and then 20% after that. Yuck! Seriously? How much IS an abdominal x-ray?
There is a whole world of medical nuances and it can seriously make you go blind. I've been fortunate enough to have my mother match up all of my statements, and bills and argue discrepancies. She's saved me a lot of money because of coding errors and double billing. I think it's sad that it's this hard to figure out your own health care. We have amazing doctors, amazing treatments, and I love the health care available, it's just so damn expensive. Think of if I didn't even HAVE insurance. That thought makes me ill.
I recently was able to get on to Danny's work insurance, so now, instead of just stacking another $500 & 20% bill onto the stack, I've already been on the internet trying to find a new doctor on my new insurance plan that will hopefully be a good fit and maybe won't be quite as expensive. So far I've got nothing. Most of the general practitioners that I could walk to (closest is over a mile) specialize in physical therapy, or they have a small private office and they don't have access to the other therapies that I was hoping to utilize. This whole no driving thing is really becoming a pain in my ass.
It has been five months, exactly, since my last seizure. In one more month I can drive. I've talked about it a bunch with Danny, and a couple of my friends, that I'm scared. I don't know if I can put myself behind a wheel. I would never forgive myself if I hurt someone. Dan and I have a friend who was hit by a car while riding her bike. If I was driving, and a seizure came on, I might not be able to stop the car in time. What if I hit a pedestrian? What if I hit a child? What if? What if? It's a very sobering thought. I don't know how I will reconcile that fear. I'm not sure if I should ever drive again.
Ugh. In the meantime, I need to find a new doctor and see if Dan's plan covers x-rays. I hate this. I just want to crawl back in bed and give up.
I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.
(image added later)
So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)
So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.
I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.
It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!
Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.
I opened this account to chronicle my upcoming trip to Europe with dad. It's odd that my first post is going to preface the trip with a freaking weird experience. So bare with me. Iceland, Sweden, Germany, the Netherlands, and best of all Poland, hang tight, we are just days away.
(image added later)
So, I'm heading in for my first MRI exam this morning. First scan of any time ever, actually. I had a severe instant onset debilitating - by which I mean unbearably painful (couldn't see/talk/move for 90ish seconds) headache on Saturday, then again on Sunday. It hit my whole brain, then slipped to the left side, finally regressing to the upper back side of my head, where it remained throbbing for the following days. After Googling my symptoms, Danny, my mom, and I decided to schedule an appointment with a primary care physician to request a brain scan. (The internet said it was a good idea in order to rule out nefarious things like brain bleeds, stroke, brain tumors - you know, the fun stuff.)
So, Monday I went down to the clinic and asked for the first doctor that would see me. While in that appointment, after describing my symptoms, the doctor argued with me. She said I did not have that painful of a headache, that people get migraines all the time. I told her it was more like a thunderclap headache. She said I was too young to have a thunderclap, it was physically improbable, even impossible. She tried to write me off, to send me home, but I wouldn't give up. I respectfully told her that I wanted the scan. She complained that it would require a lot of paperwork and that I would have to wait at least a day to get it approved. I told her it was fine, I would wait.
I'm sure everything is fine, but we want to make sure I'm in good health before I cross the globe.
It was originally going to be a CT scan, but was upgraded by my insurance company to an MRI. I do love a good upgrade!
Wish me luck, I've got a little over 2.5 hours before my appointment! I'm really excited to see what the inside of my head looks like! I've never even broken a bone, or even had a cavity yet. I'm as medically vanilla as you get.
