I am not a Pollyanna, damnit!!!

I’m having a tough time trying to figure out how to start this… starting at the beginning is usually the best option, but I’m not sure that I know where the beginning is here. So, I’m just going to let myself ramble on for a little bit til I find my voice… bear with me…

Okay, I think that what I’m trying to offer up tonight is pretty much an apology of sorts. Or maybe an explanation? I’m not entirely sure where I’m going here….

I want you to actually understand what I mean when I say, “We were blessed”. I want you know that I am not trying to make anyone feel better about his death, least of all myself (I already feel fine-ish, thanks). I’m not trying to fluff off your sympathy. I know that it’s hard to know what to say sometimes. I also know that, “I’m so sorry for your loss” really means, “Wow, that sucks. I can’t imagine what that feels like and I’m glad I don’t have to.” And, I’m good with that.

I am.

Hmmm, maybe this does have to do with making other folk feel better – but deep down I think it might be even more about making me feel better. I’m really contradicting myself tonight, huh? I’ll try to monitor that going forward…

Anyway, about being blessed…

For this to work, you have to accept as a given that Honey and I started this journey with brain cancer. It won’t work if you try to run the story any other way. I might never had even met Honey if it weren’t for the cancer. Or not, but begin with Blob being an inevitability if you would…

Being blessed…

We (all of us who knew him and some who didn’t) were touched by the lessons Honey taught, his seemingly effortless patience with and acceptance of Life. Not just HIS life, but Life.

He was pretty awesome that way.

He put on a really good show. Fooled me too, more times than you’d think. I still sometimes feel like a bad caregiver for all the times he tricked me into thinking he was doing significantly better than he actually was. I hate that he did that, and I love him all the more for having done it. *Nod thoughtfully if you know what I mean.

He is easily the most spiritually evolved person I have ever met. I’d be willing to bet that he’s probably the most truly Christian person most of us have ever come into contact with. Isn’t that crazy? He didn’t follow any particular dogma. He referred to himself as a progressive Christian with Buddhist leanings and I guess that’s a good enough way to describe where he was coming from. He actually walked the walk significantly more than he talked the talk. Wasn’t that what Jesus taught? Didn’t he specifically tell his students not to go out and beat people up with his message? I’m pretty sure he did. I think he threw out a little bit of lead-by-exampleness at that same time. Honey took that lesson to heart.

I laughed every day we were together. EVERY day.

He actually did dance like nobody was watching (All. The. Time. Thank you very much), love like his heart had never been broken and live like there was no tomorrow. Right up until there really was no tomorrow.

I got to have more time with Honey in the four years I had him than I did with The Boy’s dad in the 15 years I was with him….

I was loved like every person deserves to be loved. I was loved for my truest self – not the self that I put out for public consumption but the self that I often hide even from myself. And ya know what? He didn’t have to love me, but he chose to anyway. He set me up to be able to love again knowing that no two loves are ever the same – nor should they be. That’s pretty awesome,too.

All that being said, I want to be sure that you also know that being his widow sucks ass in a really huge way. Like, a really, really huge way.

I didn’t function for the first month he was gone and then I barely functioned for the next few after that.

I still have a hard time going to bed. I go to sleep just fine, (where-ever I happen to be sitting or standing when the need hits) I just struggle with going to actual bed. I’m almost positive that this is related to the fact that Honey waited until I had fallen asleep to die. I know this was his final act of charitable love, that he wanted to protect me right up until the end, but it didn’t work out that way for me. Rather I felt like I was going to lose everything I hold dear just by going to bed. Maybe (I rationalized) if I never went to bed, nothing bad would happen again…. And thus we enter into (and stagnate in) the bartering stage of grief.

So, yeah. I am sorry for my loss, too. But I was so very blessed to have had him.

AND…. I know it.

Love you

and rodeos (but that’s a story for a different day…)

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The Hospice Experience – Part 1 (back story)

Let me start by saying that hospice is fantastic. However, understand that needing hospice sucks huge dinosaur eggs.

I’m pretty sure I’ve mentioned that we have a small town house. maybe 1600 sq ft. divided into up and down stairs w all the bedrooms upstairs. so there is a (very) small living space downstairs that had the hospice bed set up in the middle of it all pretty much on display, the center of attention. boom, right there when you walked in.

During the almost 2 months that Honey was on hospice care, we had anywhere from two to ten people staying in the house at the same time. Honey’s mom and sister stayed just over a month. my heart sister, Jeffa, was down from Portland at least 3 times, it was crazy busy.

Honey decided to quit PT, OT and speech therapy. He couldn’t see the purpose of it if he was a short-timer. he was tired, frustrated, overwhelmed and scared. We were all tired, frustrated, overwhelmed and scared.

I managed to maintain some semblance of control by the grace of The Divine. well, maybe not as much as I would like to think… I made the Starbucks barista cry when I brought my coffee back in tears one morning b/c it wasn’t right. when he said, “relax, it’s just coffee,” I thought my head would explode as I had to explain that, no, it wasn’t just coffee… it was the only thing I could count on to be right in my day. The one thing I honestly looked forward to in the mornings. My coffee was always perfect (and always gratis) after that, but I was so embarrassed to have lost the show that I still feel a little guilty when I see that particular man at work. I actually started going to the icky grocery store Starbucks in an effort to save face.

I changed the decor of my living room to incorporate the hospice experience. And being me, I had to do it all the way (half way done is never good enough for me – I’m a typical oldest child overachiever)… we were jungle themed and all sorts of wild; right down to the throw pillows on the sofa. I’ve got to give him credit – the man never complained and I know that he was not feeling all that virile and Tarzan… Right up until the end – he wanted to make sure that I was happy…. even if it meant sleeping on animal print sheets.

There are a few remnants of the time still floating around the house… The Boy-child still uses the zebra print blanket that was on the sofa, I still wear the pink leopard print robe that I had to get b/c it was too cool to pass up and I still simply can’t justify parting with the very expensive towels I bought to round out the theme… otherwise – it is all gone. I couldn’t bear to keep the reminders and neutralizing the décor seemed a lot easier than moving.

So, I guess this will have to serve as the back-story/introduction to all that was hospice… there is so much more to tell, but I am still sorting things out. I’m hoping that by actually putting this down in words, I can process and get me some closure. It’s time. It’s been time for a while now.

So, yeah… there are some very funny stories tied to the time we were with Hospice, there are also some sad/emotionally wrenching stories. But, then, I think that’s the way it is with almost everything. We do what we can to get through and hope that when the day is done we still have all our fingers, toes and wits about us. For the record, fingers and toes are much easier to keep track of than wits.

I have forgotten more of that time than I can remember (I think that might be a product of self preservation) but I find myself reflecting back with a greater sense of peace than I’ve felt before now. It has taken quite a bit of time and trial to get to a place that I can talk about it – but I’m here now, and all y’all were so good to us as we were enmeshed in the act of trying to get through each day with our dignity and nerves intact, that I do want to share it with you. I’m not sure if this is a selfish or selfless act. It is hard to write about – but I feel a certain lightness of spirit having started the endeavor. I’m not sure when subsequent hospice posts will make their debut – but you know as well as I that I am compelled to share and share I will… still trying to decide if this is a character strength or flaw…

Thank you, my Dear Hearts.

Love you.
and thank my lucky stars for you all the time.

A Widow For A Year (+)

Dear, My Loves,

I am back. It was a long, difficult detour, but I AM back and I have some pretty cool stories to share.

I want to tell you about being a young widow – as it has been for me anyway. I want to talk lonely, bitter, pissy, and about standing directly in the shadow of Grace (the ethereal Grace, not your girlfriend down the street).

I want to tell you about “The Hospice Experience” but that will likely pop up here and again as things remind me. So much, really, is faded or filed away for safety purposes. As it is time, I will dig’em up and tear’em up with you.

So, you knew I couldn’t stay away? Forgot to remove me from your “blogs I follow” list? Stumble by my place while looking for some serious information about chemobrain? (If yes on that last one, sorry.) Doesn’t matter all that much to me why you choose to listen/read, but telling stories is in my nature…. I’m glad there are folk who want or need to hear them.

I want to wonder….
And that’s kinda cool too.
It’s even more cool that we can wonder together
Sorry… segued way too close to something ethereal for having been gone so long . Eek.
(she shivers slightly and gets on with it)

So, yeah. There are stories to be told; silver linings to be sought; and battles to win yet. Might not always be fun, but it’s usually awfully interesting. (I think so, anyway.)

The name of this new era of writing is going to have to change accordingly. I’ve been trying a couple of titles, but nothing actually unique is jumping out at me. So…. all y’all may never hear (or see) this again, but I could use some help here, I think…. Anyway, I am open to taking suggestions. Lay’em on me.

Love you
thank you for waiting for me

~ Me

My Honey is Gone

Last night (1/22/2013 @ 11:31pm) my Honey left to pave the way for the rest of our journey. He told me he would wait for me.

He went quickly – only three hours of hell, for me; the Hospice nurse assured me that he wasn’t feeling pain. I’m sure she is right, he was pretty loaded up on morphine.

He didn’t seem afraid at all. I knew he wouldn’t be. We have talked often of the soul that this body houses. About what it means (to each of us) to BE and to be BECOMING. He has been, he is now, he is becoming always.*°

At the very end, I crammed into the bed with him and held him. A position we have shared on many of our hospital getaways, so I was really quite comfortable. Really. So comfortable that I fell asleep holding him.

Apparently this was what he had been waiting for, because he began his slumber at the same time that I did.

I remember looking at the clock at one point and thinking SK should be driving here with my mom by now. Then I rested my head on Honey’s chest and dozed off.

I woke 20 minutes later to the sound of the Hospice nurse calling in Honey’s passing. Everything else was so quiet, almost preternaturally quiet. It took just a second for me to realize that I was no longer hearing the tortured sounds of my Honey trying to breathe. He was quiet. He was peaceful.

I need to thank Cyndi and Mary for being by my side and for singing “Spirit of Life” as the end came nearer.

My Honey waited until after his family had left to return to their respective homes before he let himself rest. He worked so hard at making his death easier for everyone else… I worked so hard to make his dying easier for him. I promised I would take care of him. I did my best. It wasn’t easy, but I did my best.

I miss him so much already. I keep turning to comment on something or other and he isn’t there to laugh with me.
Sad, sad, sad.

* use of gender specific pronoun for convenience and consistency
° used as a means to pacify the UUs out there on the fringes who are correcting my lack of gender neutrality as they read

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.)

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.