I hope you'll all forgive me for not being able to respond individually to each message I've received (I literally haven't had the strength), and I also hope you won't stop sending them. I have received such an outpouring of love and support from my friends and family, and at this point I need all the help I can get to stay positive…
Monday afternoon I checked my voice mail to find my neurologist's office had been trying to reach me for hours. That didn't seem like it could be good. When I spoke to the nurse, she said the doctor was in a procedure, but he wanted to speak to me personally about my spinal tap results. That didn't seem like it could be good either, and it wasn't.
The doctor told me I have an infection in my brain, and I needed to get to the hospital to start IV drug treatment. He said he couldn't project yet how long I would be there, but it wouldn't just be overnight.
"Do I need to go now?" There were already tears flowing down my cheeks. I had just settled into my desk at work, and a million things were swirling through my mind as to the logistics of dropping everything to check in to the hospital for an unspecified amount of time.
The doctor said I could go "today or tomorrow morning," so I told him tomorrow would be better. I googled my diagnosis — Cryptococcal Meningitis — and decided quickly that Google is not my friend.
I made a couple of phone calls to share the news, and started making preparations to be gone for an unspecified amount of time. Errands, laundry, and packing up several days' worth of food, along with toys and blankies, for my dogs to go to "camp."
My alarm went off at 5 a.m. Tuesday and I packed up my laptop, kindle, and personal items. My mom went with me to drop my dogs off, enjoy a last meal of Chick-Fil-A, and check in to the hospital.
"Oh, we've been waiting for you," said the lady at the admitting desk. Another woman wearing a white coat in the elevator indicated she'd been expecting me as well. "She's here," announced the secretary in the nurse's office as I arrived on my floor.
My mom and I had been joking all morning about me wanting an escort to the VIP check-in, making sure my suite was on the club level, putting in a cabana reservation, etc. So, it was kind of amusing the way the hospital staff was rolling out the figurative red carpet for me.
I haven't spent much time being amused since.
My neurologist came to visit me with an infectious disease specialist, who will be helming the ship while consulting with my other doctors.
Dr. T explained that I'll be taking a very toxic drug through an IV for 4 weeks. Depending on how I react to the drug, and how much they are able to stabilize me, I will likely be in the hospital for up to two weeks, then need to come back every day as an outpatient for the remaining weeks. The drug, she told me, cannot be administered at home because it is simply too toxic. Fabulous.
I'll also be taking another drug in pill form, which will continue for several weeks beyond the IV administration, and then be taken in a lower dosage over the course of a year.
The IV drug — Amphotericin — may cause kidney damage, so they will be taking my blood each morning.
And… wait for it... I will have more spinal taps.
What?!?!
At first the doctor indicated she'd be ordering a new spinal tap immediately, to which I reacted by gasping audibly and quickly searching the room for a volunteer tribute (Hunger Games reference for the non-initiated). After a brief discussion with my neurologist, Dr. T decided to wait two weeks for a comparison tap. (Have I mentioned how much I love my neurologist?)
I did have another MRI almost immediately, to determine whether the infection is in my spine as well as my brain, but I don't have those results yet.
The nurses started my IV drug last night. It was a small bag — supposed to last two hours — to ease me in to the side effects. At first, the only thing I noticed was that the fluid was cold going in. Apparently that's normal. An hour and a half later, I was in full-on convulsions. I was freezing cold and burning hot. I felt like my skin was suffocating. I couldn't control the crazy shaking, or the tears, which turned quickly into gasping sobs.
The nurse terminated the drug, so that I was only getting saline through the IV, but the convulsions lasted for over an hour. They had me hooked up to a vital signs monitor because my pulse rate was sky high and my blood pressure — normally in the 118 over 68-ish range — had skyrocketed to 196 over 119. They were also monitoring my oxygen intake since my breaths were so shallow and rapid.
The nurses had called my doctor, who had them feed me acetaminophen and inject Benadryl into my IV. That injection burned, and stung, and made me immediately very sleepy — which was a weird feeling to have while my body was manifesting very active sensations.
The good thing is, once my body relaxed, I slept. Not well, but a lot. The bad thing is, this is the expected reaction to a very toxic drug that is a necessary evil.
It seems so odd to me that western medicine poisons your body to rid it of disease. But the seriousness of my infection outweighs the seriousness of the drug reactions, and so I must persist.
I've been eating a really healthy diet for months, and my body has not seen much in the way of processed foods or sugars that don't come in fruit form. Over the past few weeks, I've eaten almost nothing beyond lean proteins and organic produce.
People had suggested that being as strong and healthy as I am, maybe my body would handle the drugs better. But in my case, I think how clean my body is may be to my detriment. Lately when I've slipped and had a bite of anything with gluten or sugar in it, I've felt anywhere from slightly sickened to comatose. And now there's a highly toxic drug being fed directly into my veins. I'm no doctor, but common sense kinda tells me my organic-grass fed-gluten free-paleo body may take this harder than some fast food nation bodies might.
I woke up nauseous this morning, so they gave me an anti-nausea drug to accompany the pill I'm taking which, while not "extremely toxic" like the IV drug, can cause some sickening side effects. I seem to do OK when I stay horizontal, so I'm staying that way as much as I can.
My primary care doctor says he gets cases of Cryptococcal Meningitis about once a decade. The infectious disease specialist likely gets one every couple of years. Leave it to me to come up with something rare and exotic.
My room, alas, is not on the club level. I've yet to find the cabanas, and the "room service" leaves a lot to be desired. The nutritionist who visited my room today laughed when I asked if they have almond milk… Hey, a girl can dream!
I've been on an emotional roller coaster for the past 20 hours or so, but I'm trying to stay focused on the silver linings; one of them being that this disease is most often diagnosed post-mortem.
So tonight, when they start a new IV bag, I'll try my blessed best to focus on the fact that I'm alive.
A nurse came in just a bit ago to check my vital signs, and told me I look beautiful today. (I haven't seen a mirror in a while, but I'm pretty sure she was lying.) At least if the food sucks, the customer service is worth the price of admission.
Please continue your prayers and positive thoughts, and I will do my best to keep the updates coming.
I love you all...
-Molly