I had a vivid dream last night just before I woke up. I had gone to the doctor to get a physical exam and they found that I tested positive for some virus that had the potential to cause an epidemic in the country. I myself wasn’t sick, as my body had developed the antibodies, but I was a carrier and could infect others. It would take 40 days for the virus to work itself out of my system and for me to stop being a carrier.
The government ordered me under quarantine for a period of 40 days. I freaked out. I explained that my husband was gravely ill and I was his advocate. I told them I had a baby who needed me, and it was impossible for me to be in their custody for over a month. They insisted it wasn’t negotiable – yet I went ahead and contacted all of our lawyer friends to get the government to drop the quarantine orders.
As the dream went on, and the government representatives explained what quarantine was – a 15X15 room with a twin bed, two sunny windows, a tv, all my personal clothing and toiletries, an elliptical machine , 3 meals a day delivered through a slot in the door – I found myself wishing desperately that they would detain me.
It was a way out. A guilt free, out-of-my-hands way out.
I know I am going to survive this. As my therapist told me, “You’ll survive. You’ll be f*cked up – but with grace.” I love that expression - and now that's my goal. "Fucked up with grace."
Last night, I took a long bath and just sat there, sunk way down in the water looking down my very long body towards my feet. I don’t take baths very often – as I told my sister once, baths are better in theory than in practice. They sound so relaxing and inviting, but once you’re in one, it never lives up to the hype. Yet, while I don’t take baths a lot, they’re like coming home - sitting there with your own body for a moment and remembering looking with those same eyes at those same legs in that same position as a little kid, as a teenager, as a twenty-something. The world around me is chaotic (mmm... understatement), but my body is always here, just getting me through one struggle at a time. So I took a moment, lying down in the tub, to breathe deeply and look down at the physical body that I have completely forgotten about over the past several months.
I had a strong sense of peace lying there. So strong that I feared I might be tapping into something serious going on with Mike… but I wasn’t. I think I finally (at least in that moment) fully embraced a zenlike perspective. Everything is fine. If Mike dies, it’s ok. If Mike gets well and we fight this tumor for decades to come, it’s ok – cause I’ll have my best friend by my side. If Mike gets sort of well, but not well enough to live at home, it’s ok. Maybe what I was feeling was the pretty f*cking accurate observation that anything would be preferable to where we are right now – and we can’t live where we are right now forever. Therefore, things have to get better. Anything... would be better.
It feels like if we can just mike to survive these acute physiological issues of blood, heartrate, pressure, and electrolyte balance, we might be able to hang with my actual Mike again. It’s like either he’ll be dead or he’ll be going to the movies. Given his amazing turnaround Friday night (just 6 days ago) and the fact that it doesn’t appear that he suffered major damage as a result of flatlining yesterday – he could be totally in there. Also, I recently learned that after swelling up Saturday and Sunday post-craniotomy, Sunday night (July 9th) the swelling started to resolve and he was really alert on Sunday night. Apparently his nurse, Tom, who has taken care of him in the past, went out to the nurses’ station at one point Sunday night and told the nurses that he had taken care of Mike numerous times, but he thinks he finally really “met” him. So, as recently as like 80 hours ago, Mike was “there” there.
So, (in comedysportz language) to review… If we can just make sure Mike doesn’t die… maybe we can hang with him – the real him - again. Death or Fun. I choose fun.
I’ve gotten lost a bit in the timeline here (not to mention in an ongoing battle with Susan about how many surgeries Mike has had. CSM, we were both wrong) Here's the summary:
- Surgery #1: November 11 (endoscopic resection of tumor - success. All but a rim on the hypothalamus was removed)
- Surgery #2: January 28 (implant catheter to drain cyst... miss)
- Surgery #3: February 1 (move catheter... too close to artery)
- Surgery #4: February 3 (catheter is just right)
- Surgery #5: March 20 (remove catheter due to complications and infection)
- Surgery #6: March 28 (endoscopic surgery through sinuses to try to get the regrown tumor - no dice)
- Surgery #7: April 4 (craniotomy to try to get the regrown tumor - no dice)
- Surgery #8: April 7 (emergency surgery to implant new catheter for hydrocephalus and to remove bone plate)
- Surgery #9: April 13 (replace bone plate and implant internal VP shunt)
- Radiation therapy: April 25 – June 6 (30 sessions)
- Rehab at Magee: June 7 through June 26th
- Surgery #10: June 30 (try aspirating cyst with needle – no dice)
- Rehab at Magee: July 1 through July 6
- Surgery #11: July 7 (craniotomy on the left to aspirate cyst – success)
- Surgery #12: July 11 (front left bone flap removal to release blood clot)
- Surgery #13: July 11 (hemi-craniotomy to remove back skull flap)
So, a couple of more funny and f*cked up things on the home front.
Kylee turned to me two days ago and said, "Aunt Danna, Does a chicken know it's a chicken?"
Let us all take a moment and ponder that deep thought. Given the f*cked up world we're living in right now, that question may be as relevant as any.
Jae’s van broke down yesterday. Thanks to the saints at Bax’s daycare, she got a ride to the garage and the van's now fixed. Than, last night, Kylee (my niece) had a fever. She saw the doc today – strep throat. FANtastic (that's sarcasm). Then, in the middle of talking with my sister about Kylee’s fever as I’m downstairs in my UNDERWEAR, my cleaning lady comes into the house (yeah, she has a key and usually we’re not home when she’s here). I acted like being in my underwear was totally normal and told her we wouldn’t be needing the house cleaned today.
Then, I get a call from a mortgage protection company. “Mrs Young? I was wondering if you had a couple minutes for me to talk with you about your pre-application?”
Oh right! Them. A week ago, I got so f*cking tired of getting letters with big bold print saying, “Mike Young! Last chance! Hurry or you’ll miss your opportunity to get mortgage protection!! Just fill out this brief questionnaire below!” -- that I finally just filled it out and sent it back. Here's how I responded:
History of serious illness? Yes.
Currently under a doctor’s care? Yes.
Ever been hospitalized? Yes (“currently hospitalized, actually”).
Any medications? Yes (“levoxyl, hydrocortisone, DDAVP, Decadron, androgel, provigil… and 10 others… not enough room, sorry. Full list available upon request”).
So, the woman on the phone says she wants to go over some of the “flags” raised on our application. Here’s what I said to her in an overly pleasant, somewhat maniacal tone:
“Well, I’m sure you are a very nice person and you are just doing your job. Here’s the deal. There’s no way in hell you’re ever going to insure us! No way in hell.”
“Are you sure of that, Ma’am? Why don’t we go over some of these questions?”
“yeah… well - I sent it in as a joke. I got tired of receiving your letters. There was a reason I wasn’t applying for mortgage protection. Namely, that my husband has been hospitalized for 4 months.”
“I’m sorry to hear that, but, are you sure that you wouldn’t be eligible?”
“Umm… Yesterday they lost Mike’s pulse and he was code blue in the neuro-intensive care unit where he’s in critical condition from a brain tumor for which he’s had 13 brain surgeries. I may be going out on a thin limb here… but my hunch… just a hunch… is that you’re not going to be giving Mike mortgage insurance.”
“Ma’am. I am sorry to have bothered you.”
“No problem. I understand. Just, you know… sometimes maybe if people aren’t writing you back – aren’t taking you up on this “fabulous” offer for mortgage protection… maybe there’s a reason. Maybe they look at the questionnaire and say, “Pointless.”
She quietly apologized again and hung up the phone.
I'm crazy. But at least I'm still laughing.
Remember - "F*cked up with grace."