The Long and Winding Road (part 1)

It has been almost two weeks since I have last logged in. There’s a reason for that. It has been quite a long couple of weeks.

The last time I checked in with you, we were waiting to get the results of Honey’s most recent MRI from DrC at MDA. Now? We are in the St.Luke’s ER waiting to be transferred over to ICU (again). I am guessing that you probably have figured out that the reading from his MRI wasn’t good. If it had been, you certainly would have been informed prior to now(and we likely wouldn’t be back in the ER so soon).

Honey’s November 22 MRI looked really good. There was just the littlest bit of lesion showing along the motor cortex. Not a big deal all things considered. His December 6 MRI however, told a very different story. It appeared as if Blob had poofed a mushroom cloud all around the cavity left from surgery. It also had started to migrate from the right hemisphere to the left. Honey had been using a walker when he was initially dismissed from MDA. By Weds, Dec 5th, he was in a wheelchair full-time. Blob started out such an underachiever – I never expected him to be able to change so much so quickly…

DrC told us (after I asked) that Honey probably has about three months left with us. He suggested that I get into contact with Hospice and told Honey that if he were his brother, he would tell him to go home and get comfortable.

Well.

No matter how much you prepare, it is still a shock to hear such news.

So, we cried. A lot. We talked. We cried again. We called folk who needed to hear what was going on from us personally. We cried some more and we made arrangements for loved ones to come visit us now, while Honey could enjoy the company – rather than later… Hey, guess what? We cried even more after that. We also got some good laughing in there – but I think that is mostly because we share a morbid gallows sense of humor.

Our good friend from Portland (J) was here last week. I spoke to her the Wednesday before Honey’s appt and asked if she could come out – she arrived Sunday morning – just four days after I asked and not quite two full days after we received the word about Blob. She brought Hanukkah with her; dreidels, latkes, a menorah and candles. And Love – she brought an abundance of love.

For a while there, I thought she brought the miracle of Hanukkah 2012 with her as well. Honey’s physical condition kept improving; he seemed to get stronger (and more cocksure) by the hour. On Saturday night, when J left, Honey was able to get up from the couch with little or no help, he was confident with his walker and was even trying to get around without it if I wasn’t paying strict attention. Actually, we let him think he was sneaking these walker free transitions – I couldn’t bear to take them away from him. He needed to feel in control of something and there is so little else that he can take charge of…

Today, this afternoon and evening, he had a surprisingly quick change of status.  Within no time at all, he lost his ability to control his left side. His face drooped, he couldn’t grip his walker (or my hand), he would fall over to the side when sitting up, it was pretty scary. We thought we would wait til the morning to see how he was doing, but that didn’t happen either. At about midnight he started getting nauseous and that was that for me – I called 911 and relinquished my (lack of) control over the situation.

So, here we are. St. Luke’s The Woodlands; ICU room 260. Visiting hours are from 8AM – 6PM and then again from 8PM-10PM. There is some talk of transferring him to MDA downtown – but there are no beds available for him at this time. All things considered, it is easier to have him here because we are close to home, but MDA has a much better food service.

It almost works out to six of one/half a dozen of the other. Almost.

Love you (just that – I love you, please be aware.)

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The Parking Lot Incident

I saw a great bumper sticker the other day.

It read, “Sure, you can have my handicapped space, as long as you take my MS with it.”

I thought it was a hoot. I want one that says they can have my handicapped space as long as they take my husband with it.

So, I had a conflict with a girl in line at Starbucks last week. I don’t know why it is so hard for me to simply keep my mouth shut – but when I see injustice, I need to do what I can to right it. (The boy child is the same way – gets him in trouble all the time at school.)

I did not have Honey with me – so I could not use the handicapped parking (both spaces were available) but had to park across the lot at Shipley’s (then, of course, I had to go get doughnuts before heading to get my coffee). As I was walking over to Starbucks, a young(er than me) woman came driving on in to the parking lot. In the time it had taken me to get my dozen doughnies no close in parking spaces had opened up so her options were pretty limited. It looked like she was gonna have to park by me.

But no, apparently she saw other options. Now mind you, she did not pull into a reserved for handicapped parking spot, but you know that chunk of parking lot with the yellow diagonal lines between the handicapped spots?  You know, the one that the people with chairs and walkers get out of the car into? Yeah – that spot… That’s where she parked.

Well – she was in a hurry. She scurried on in to the coffee shop right in front of me – I thought for sure she was just going to be giving something to someone and then leaving really quickly. But no, she got in line. I figured she must have called in an order (I didn’t know you could do that, but it made sense at the time) and was just going to quick get it and get going. But, no, she had a pretty complex order that she was in the middle of placing when my head just exploded. All. Over. The. Place.

I very nicely (and meekly) excused myself and asked if I could just tell her something right quick. When she replied in the positive I took it and ran. I thanked her for specifically choosing not to park in the handicapped space, and then proceeded to tell her that the spot she chose while NOT a reserved spot, she is still in handicapped space. Then I brought it home with, “My husband had brain surgery a month ago. If I had brought him here, sure we’d have a place to park, but I wouldn’t have a place to put his walker for him to get out of the damn car, because YOU chose to park in a non-spot rather than walk 10 yds.”

Her response initially was, “Look, I’m only going to be here for a little while.” Bad choice of retort because from there I went to, “You are going to be here at least as long as I am, and that is not the point. The point is that you are parked in a spot that is reserved for people who actually NEED it.” She then informed me that she didn’t want to argue with me about it; I told her I wasn’t arguing, but was just letting her know how her choices may affect others.

At this point, I was near to hyperventilating because I really, really do not like conflict – even if I don’t know the person – but I really, really had to go there – otherwise I would have held on to that anger for a while and nobody needed that.

After the woman moved around the counter to wait for her order, the lady behind me gave me a little pat on the shoulder and said she knew exactly where I was coming from and that her husband was in a walker following a stroke. I appreciated that she tried to comfort/console me, but I would have preferred it if she had stepped up when I was going on and on.

Anyway. That’s my story (and I’m sticking to it).

We are currently in the “inner waiting room” waiting on Honey’s oncologist to let us know what his new MRI is looking like and where we are going to go from here. (I think home is a likely place…. (silly)). Will update y’all when we know (and have processed) what the good doctor has to say.

Love you (but not conflict, so not conflict)

What Cancer Made Me Thankful For This Holiday Season (or: Yay for the guest blogger!)

This particular blog posting is from a new friend named Cameron. His wife, Heather, had mesothelioma (to my Northwoods friends, I believe Larry had mesothelioma as well. Hildra?) a very rare cancer that is usually diagnosed when there is very little time left to fight. Like GBM – there are very few folk who have been winning the battle for over 5 years.

Anyway – Cameron contacted me earlier in the week and asked if he could share part of his story with all of us. It is a wonderful and timely story. One I so needed today.

So, read, enjoy, pontificate and then go hug your loved ones.
(expect another one or two blogs to follow fairly quickly behind this one – I have news to share as well.)

And, here is Cameron:

What Cancer Made Me Thankful For This Holiday Season

I’ve always loved the holidays. It’s such as special time of year; a time when I get to focus on family, love, and the wonderful things I have in my life. In 2005, it seemed my wife, Heather and I had even more to celebrate than usual during the holiday season. We had a brand new baby girl, Lily, who was only three and a half months old at Thanksgiving. We were looking forward to our first Christmas with Lily as a family of three. We talked a lot about our family traditions during the holidays and which ones we wanted to add now that we had Lily in our family. It was such a great time.

It was such a great time until three days before Thanksgiving, when Heather’s doctor told us she had a rare and deadly form of cancer called mesothelioma. We went from planning our holiday dinners and shopping trips to fighting cancer in a matter of minutes. I was angry and scared, and it wasn’t possible for me to feel thankful for anything that holiday season. I was so hurt, emotional, scared, and angry. Our first holidays as a family were, needless to say, nothing like what we’d hoped.

Heather’s family flew in to celebrate the holidays with us, and rather than celebrating with our beautiful baby girl and family, I sat around my kitchen table and listened to my wife’s parents talk about our finances, our assets, our money, and our bills. We knew we were headed to Boston to start Heather’s treatment, but we had to have this conversation first. It was uncomfortable and terrible. I didn’t want to have it. It was one of the hardest moments of my life, having this conversation. We discussed our options, what we could sell off, which bills they’d be able to help us with, and how we could get Heather the best care possible. Looking back, I have a completely different outlook on this day, but at the time, I was mortified that I had to lean on our family to get us through this.

We had to keep ourselves afloat, and even though we both worked before Heather was diagnosed, we were quickly running out of money and accruing mass amounts of medical bills. So much for our holidays, is what I thought. It may have taken me years to realize this, but that conversation wasn’t as bad as it seemed at the time. That day wasn’t about making me feel helpless; it was about making me realize how good I had it. We were in a tough place, but we also had a family that would drop everything in a second and offer their time and money to us so we could keep ourselves above water.  They made incredible sacrifices to help us make it through, and I realize now how lucky I am to having such a loving and caring support system.

This year during the holidays, I am focusing on how much I have to be thankful for, such as a beautiful daughter and wife, a loving family, and more time as a family.  This year will be our 7th Christmas with Lily, and we’ve gotten to create some of those holiday traditions we had planned on all those years ago.  Heather has beaten the odds and been cancer free since finishing her mesothelioma treatment over six years ago.  We hope that our story can help others currently fighting cancer find some peace and comfort this holiday season.