Today I showered by myself after a long night where I couldn’t get comfortable and, eventually, ended up sleeping on the couch. (I might have to stop telling Eric how much I hate that stupid couch if it’s the only place I can get comfortable enough to sleep… maybe. I still hate it.)
I worked for the first time since I was in the hospital. Sure, my job is posting content to a blog so it isn’t like I was out digging ditches or anything, but still, it was a step back.
Also, my network of people who I’ve set up to remind me that I am NOT going to die during surgery (which is an irrational fear, yes, but try telling my stupid brain that) are doing a great job of texting me randomly to let me know it’s all going to be fine.
And the most amazing breeze is blowing through the open window next to me reminding me that even if I do die during surgery (which I won’t) I have a perfectly wonderful life which is more than I ever deserved and if it ends tomorrow or August 26 (which it won’t) I have nothing to complain about. (Except that stupid couch.) Lucky, lucky me!
I will be having surgery on my spine to remove two lesions on August 26th in Chicago. The reason for the long wait is that I really wanted this specific neurosurgeon. I have had five surgeries to remove tumors from my spinal cord in the past. Four, all with this neurosurgeon, went well. The one with a different neurosurgeon that I picked out because the location was conveint, was not great.
The problem is my surgeon spends a great deal of his time traveling and giving talks now, so he’s gone a lot. He felt that because this surgery would be more difficult (since part of it would be opening up a section of the spinal cord that has been operated on three previous times and has had radiation therapy all of which has caused scar tissue) he wanted to not just do the surgery, but be in town and available for the week after, while I am in the hospital, in case there were complications.
Right now, I am doing well at home. I’m frustrated by my limitations, but am able to do most things, at least for a small amount of time.
I got to see my lovely Emily (center, sitting on Nana, the dog) perform as Michael Darling in The Iowa River Players Theater production of ‘Peter Pan’ tonight. Everything about it was wonderfully done and I was amazed by Emily’s performance.
She is, unlike her mother, absolutely fearless!
So much is a fog of pain and then pain killers and then pain again and on it went. I can remember little of the hospitals and the ambulance transfer, which is strange to say the least.
My favorite story that has made its way back to me is this: the amount of pain medicine needed to control the pain of the tumors impinging on the nerves of my spine was also enough to slow my breathing. While in the hospital with my friend, Megan, from time to time the pulse oximeter would beep to let them know that the oxygen saturation of my blood was too low and I needed to breathe more deeply. Apparently, every time it would ring out I would grumble, “I’m breathing!” Sweet Megan would brush my hair back and say kindly, “I know, honey, but I need you to take some deep breaths now.” To which I would reply angrily, “I think I know how to breathe!”
Nice to know that one of the first things to go is my manners. Well, you know, and breathing.
In better sleeping news, this adorable sleepover happened while I was out!
Thursday night, I was admitted to my hometown hospital in awful pain. After three days and two nights trying to get my pain under control, last night I was transferred by ambulance to the University of Wisconsin Hospital in Madison.
I just got out of a three-hour MRI and, as I returned to my room, I was greeted by my oncologist who told me that the tumor that had been stable while I was on the chemo had grown dramatically in the last seven weeks and now requires surgery (probably before Friday) and then weeks of radiation.
I’m sorry, that’s all I know right now. Thank you from the bottom of my heart for all the good wishes and prayers! They made all of this bearable.
It’s almost 1am and I can’t sleep; the pain is excruciating. The only relief I’ve been able to get was from an amount of Percocet so high it made me unable to function from exhaustion and nausea.
Claudia sobbed for an hour today when I told her I couldn’t drive her to Ft. Dodge for camp so I’m determined to make it through the night without the Percocet so I’m clearheaded for the drive in the morning. And the oncologist has scheduled an MRI for Monday in Madison which seems both a million years and miles away.
Right now, I could swing being a patient or a mom, but trying to do both is killing me.
Two days ago I threw my back out playing Just Dance at a Fourth of July get together because that’s how I roll. The last two days have been painful, but it had been getting better… until tonight.
Moments ago I raised my arm just to waist height while trying to put away leftovers after dinner and was knocked to the floor in tremendous pain. Unable to stand up or even sit, I hunched on all fours on the floor and put the Lamaze breathing I never got to use in my three C-sections to work. Claudia came rushing in and stated, “At safety camp they told us if our mom or dad was on the floor couldn’t get up we should call 911,” which, for some reason, made me laugh, which made the pain shooting through my spine worse.
The moral of the story? I need to find more exciting ways to explain my Gollum-like posture. This throwing-my-back-out-while-sneezing crap is getting old. Who’s up for skydiving? Or toddling with the bulls?
Fourth of July parade!
You haven’t seen the Fourth of July until you’ve seen a small town do the Fourth! The parade was over an hour long, the kids got pounds of candy, and you know everyone lined up for miles!
The kids and I love Eric very much but even we can’t look at his name on this float. Turn away, Claudia!