The Uncondensed Version of the Medical Adventures of the Week (Part Deux)

I hadn't realized how bad I made things sound in my Part One blog post. It hasn't been a party exactly, but really it's not so bad. I am in a ward where people are in way way worse shape than me, so I feel quite fortunate despite my not-fun tests, blue vomit, noisy roommates and such.

So...to continue...things have become much less eventful since Tuesday afternoon's spinal tap.

• Tuesday night: My family headed home and my roommate was moved to her own private room. Giving me a temporarily private room myself. By the way, because of her surgery, she had a swallowing problem and they had her on a feeding tube. She hated it and was begging for real food, but she had to "pass" a swallowing test first. I overheard one of her docs tell her to practice for the test and one thing to practice was to stick her tongue out and swallow. I have been attempting this skill for days now and I cannot do it. Seriously. Is this a normal thing one should be able to do?

• I "think" I got a little sleep Tuesday night. And if you followed my status updates on The Facebook, you will see that I made note that I still had my "private room" at 2:50 am Wednesday morning. HOWEVER...at 3:10 am Wednesday morning, my new roommate and her husband arrived. They are wonderful and very apologetic, but also need a lot of attention. She had her spine replaced (or something like that) and had been immobile. Apparently, the surgery was relatively short, but she was in recovery for NINE hours afterward puking and unable to tolerate any pain medications. Suddenly, my spinal tap seems like a walk in the park. I feel bad complaining about any soreness.  And...seriously...can you imagine puking with a swollen non-moving spine?? Oww.

• Wednesday: My big adventure for Wednesday included 2 trips to see my neuro-ophthalmologist at the eye clinic. Oh...and a shower. Woo hoo. At the eye clinic, I saw my MRI. My brain is pretty...umm...unremarkable. LOL. I mean...its huge and obviously very healthy and smart. There is no evidence of tumors or lesions. Just the obvious swollen optic nerve. There is something on my spine that is "questionable" (I couldn't see it and actually neither could my eye guy...it's that small), but they are doing more tests for MS and/or some other systemic autoimmune disorder just to be on the safe side. Not gonna stress about it. For now anyway. The disheartening news, which is also mostly vanity, is that I will have to again be on the high dose prednisone for awhile.  This, of all things, made me cry. 

• While waiting to be transported back to my room, another patient who had also been tearful walked over to me and put her had on my shoulder and said "God knows and he will take care of you". It was odd and awkward, but also touched me in a deep and profound way. Perfect strangers can be amazing.

• The rest of Wednesday was pretty uneventful. I spend some time roaming the halls with another patient, whose name I don't know. He has been here for awhile and walks day and night. The nurses gave him his own coffee mug for the coffee machine since he pretty much lives here. He will also be released on Friday, but starts radiation for a spinal tumor tomorrow as well. Nice man.

• Today is Thursday: It was another long night of being awakened by nurses (for my roommate) and beeping machines. I feel bad because I think I kept my roommate and her daughter awake with my snoring when I did sleep, which made me feel ashamed and mortified. Ha ha.  My husband came in for an early visit and they let me leave the ward (by foot!) and have breakfast with him in the cafeteria. What a treat!

• I saw a group of neurologists this afternoon (they travel together at these teaching hospitals) who told me that I would be discharged tomorrow after my last infusion. They were impressed by my smart questions (she says with a puffed out chest of pride) and referred me for follow up with a neurologist who specializes in nerve inflammation because it will be a few days before all my test results are back. Basically, they have not ruled out MS or the cancer in my spinal fluid...(but everyone feels that the cancer part is really really unlikely.) There is a very good possibility that this is just another episode of some crazy immune reaction that just happens to plague me for no known reason other than me being a freak.  Just especially un-fun timing. If this is karma, I am sorry for whatever horrible thing I did in a past life! I swear! No swearing is bad. I...uhh...am just sorry. LOL.

• So...here I am. I should be outta here within the next 24 hours and back at home with my husband and my own bed and life and quietude. Yesssssss. My vision improves with each infusion and while I am not happy about the prospect of fat face/bald head, I know this is really all part of my lesson in perspective and life that I am supposed to be learning. Or something like that. Right?

Thanks to everyone who has reached out to me this week and in the past weeks as I journey through this medical labyrinth.  When I reach the center I know I will have made it because of everyone's love and support.

By the way....nurses are utterly amazing. They have to remain cheerful and upbeat with cranky whiny demanding patients all day and all night. Not only do they tend to medical needs, but also clean up bodily fluids and provide food and drink delivery. They take the time to answer questions, reassure, chit chat about mundane and gossipy things, laugh and joke, provide local restaurant recommendations, rub your back when you puke and stroke your shoulder when you cry and happily run from room to room prioritizing patient needs and wants. I am not sure I could ever be this patient and loving to strangers. Kudos to all nurses and techs and helpers and CNAs etc etc. Amahzing balls!