Tuesday, June 6, 2006

[Baxter would rather discuss hot dogs than "All Things Considered." I miss adult companionship.]

Another not good day today for Mike.
Not responsive, unable to identify time and place. Unable to answer questions – like, any questions. You ask a question and he thinks and thinks and thinks and disappears in thought. He looks especially weak today, too. Not able to focus his stare on anything in particular.

The deal with the Decadron (steroid to reduce brain swelling) is this – they cut his dose from about 10 mg early last week to 6 mg. Then from 6 mg to 2 mg on Thursday, June 1. Thurs, Fri, Sat, and Sun he only got 2 mg each day. Looking over my blog entries, I felt like he was down and depressed and out of it on Sat and Sun. – probably while the lower dose started catching up with him. Then Mon was when they upped his dose again. They gave him 8 mg at 1:30 pm yesterday and then another 8 mg last night at 5:30 pm and another dose this morning of 8 mg. Hopefully we’ll start to see some improvement here. In the event something bad is going on in the brain itself, we’ll see it because he got his pre-discharge MRI today (at 2 pm).

In the middle of all this, I wanted to be certain that the right people knew that he really wasn’t looking good. I called Evans’ nurse, Kelly, had a long conversation with Judy (the N.P.), and paged Andrews. I know people are aware of this change in his condition. I just always want to be certain that people are doing something about it.

I’m bummed that this is his state going into Magee. I guess it does leave a lot of room for improvement, which should help our case with the health insurance folks checking in on his weekly progress (BTW, we have officially been approved for our first 7 days of rehab). But I would so much rather he be doing well enough to get a lot out of a rehab experience.

Details about the move to Magee: They’ll be transporting him in ambulance from JHN to Magee at 10:15 am tomorrow. I need to be there in the morning to sign admission papers and get him settled in. Family can visit between 8 am and 8 pm. Friends are “kindly asked to limit their visits to between 4 and 8 pm.”

“But what if our friends are our family?” I asked. Kathy (from Magee) said that if for some reason I (or other blood relative) can’t be there and we would like someone there in the day before 4 pm, I could designate someone to serve as family. Kathy did say that it would be very helpful for “anyone who is going to be a part of Mike’s care plan upon his release from Magee to visit him while he’s in the program to see how the nurses work with him" and to see what his needs are.

I think 4-8 pm visiting hours will serve us all well. It means that Mike will really be working hard during the day building up his strength and flexibility, and he can end his days with warm visits from friendly faces. The nurses at JHN joke with Mike that his “vacation is over” because they’re going to work him so hard at Magee. When they say this he smiles a little.

I had a great session with my therapist today about a lot of the big issues looming in the future. (Yes, I’m seeing a therapist and yes, I’m writing it on my blog on the internet for anyone to see. Never has a situation warranted such unapologetic disclosure of the receipt of cognitive therapy as this one.)

Anyhow, the therapist is great. I told him how I have guilt and ambivalence when thinking about exploring our post-Magee options for Michael (finding someone/someplace to care for him). I told him how on Sunday, at the hospital, the nurse handed me the washcloth to spongebathe Mike and how tears streamed down my face as I washed the parts of this person who seemed more like a grandfather than a spouse. I told David (the therapist) that I can’t do this stuff longterm. I can’t toilet and bathe and clothe and feed my husband 24 hours/day for the rest of my life AND provide those same services to Baxter AND to myself AND make a living to support our family. He said matter-of-factly, “There is no option here. No, you cannot do it. No reasonable person would say you should. And anyone who says you should…. Blows.’

Yeah. Awesome guy. Told you!

I also use my sessions with David to talk about stuff I do not dwell on in my daily life. Like, the big one: I miss Mike. I miss him mocking me endlessly – always coming up with a quip just a bit funnier than mine (bastard). I miss him taking pleasure in the things I love – humoring me by getting as excited as I get about a new bloom on my clematis, getting giddy with me over the sound of the ice cream truck or the thought of making popcorn to eat while watching tv. I miss watching him interact with our friends, making everyone laugh, laughing at Kevin’s jokes, cooking with Tom-tom in their pink lacey aprons, hugging Michaela, talking movies with Scott.

I miss speaking of Michael in the present tense without feeling like I’m hiding something from the person I'm talking to (“My husband is great at parallel parking!” “My husband loves his job.” “My husband does all the cooking in our house.”)

I miss having a romantic relationship. I miss feeling even remotely like a woman. Not a mom or a caregiver, but a young woman (yes, 30 is young. I only learned that when I, myself met 30). I miss planning things – fun things. Mike and I travel a lot and love planning trips (there’s that present tense again). We love hiking, camping, and adore theme parks as though we’re 11 years old. I miss making plans to go to Dorney park or Six flags. I miss the zoo. I miss picnics. I miss the smell of his cooking on a Sunday afternoon. I miss being the innocent person I was one year ago who honestly believed that life wasn’t that difficult (outside of the 3 months that Baxter was an infant – oy.)

I miss adult company in the evening.
I miss someone to talk to about NPR - especially after Bush’s speech Monday about the gay marriage amendment. I talked to Baxter about it over dinner, but he just asked for more hot dogs.


Anonymous said...

Missing the Mike you married must be so so difficult. I'm so glad you found a therapist you can trust. Why would you even think that seeing a therapist warranted any kind of apology. If your tooth was inflamed would you apologize for going to a dentist? You deserve to get all the help you need in any way you can.
Maybe Baxter was giving his opinion of Bush when he talked about the hot dog:-)
As always you guys are in my thoughts everyday.

Mike Weissman said...

I can't imagine all the questions that must go through your mind in a day. I can't imagine how it feels to be you.

I am amazed at your strength, and how you just keep putting one foot in front of the other and keep going forward. Don't even try saying that "you do what you have to do"...many people would have been in a heap on the floor a long time ago.

Thank you for sharing such an intimate glimpse of your life with us. We're all lucky to have you in the world.

Take good care of yourself and your handsome Bax.


Dritsas said...

1. Is blows a clinical term?

2. Pink lacey apron? I hate this tumor even more now, because I cannot effectively make fun of him about this.

3. I'm pretty sure Mike would've just asked for more hot dogs, too, in the same situation.

Jokes aside, this all just sucks. I hate this. So please, let me know if there is anything I can do to make this suck less.

And let me just say that I for one totally expected that you would get help to take care of Mike at home, so please try to chase any guilt away (I know, it's hard). You don't deserve to feel guilty, you've been such a superhero during all of this. I think I can speak for many of us when I say that we all have so very much respect for you, Danna, it's hard to even put it into words.

-Dr. Itsas

CSM said...


I woke up this AM and literally said to myself: "This is the big day! Mike gets to go to Magee! Wonder what it's gonna be like for him? For Danna? I am SO psyched that we're HERE!!! It seemed like such a long time ago that the radiation started... and now it is done and he's moving on and the next chapter in the life of the SFT has arrived."

I hope you don't mind -- but I couldn't help but take a moment and reflect on how you've gotten thru the last coupla months... and how you've done so SOOOO tremendously. Ups, downs? Sure. More ups & downs? Sure. But this is HUGE. HUGE HUGE HUGE. And I am confident that once the swelling goes down and the meds do what they are supposed to do and the SFC's (cysts) are drained... that Mike will flourish. It makes sense that he would. Esp. with the care and attention that the Magee folks will be giving him.

So... I hope you don't mind it if I am celebrating for you & MIke & Bax today. This is a good day.