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…)

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 7^th 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.

Oh, The Stories I Could Tell…

If either of us were currently working outside of the home, Honey’s surgery would have been scheduled for a most convenient time. He got released from the hospital right at the beginning of Thanksgiving break – so theoretically everything should have been pretty easy going.

Theoretically.

I hate theoretically – cuz it is almost never in line with actually.

Let me tell ya about what Thanksgiving vacation looked like in our house this year.

I’m gonna tell you now that I will likely win any and all comical bad vacation stories with this one. (For those of you who have heard them – this even beats the “mooooove”  to TX when I was 22 and The Waffle House story – both!)

So – Friday, November 16th, Honey gets sprung from MDA, the kids get sprung from school – I get sprung from any kind of sanity I have ever held.  This was my schedule of events for the first official day of Thanksgiving break.

1. awake at 3:30AM when Honey decided he was ready for breakfast
2. go to cafe 24/7 to find something he can eat in the middle of the damn night
3. wake again at 6:30 when it was actually time to call for breakfast
4. eat breakfast (cream of wheat, blueberry greek yogurt, fresh berries and a Dr Pepper)
5. leave MDA at 7:30am – return to The Woods for a second grade Poetry Feast for The Boy Child
6. drop dog at groomer so that Honey is not offended by his dog-like stench when he gets home
7. attend Poetry Feast, dismiss boy child from school early b/c that’s why they have things like Poetry Feasts on the day before vacation; so you can get your kid out of there by lunch time and the teacher can get cut some slack for once
8. return to MDA to bring Honey home
9. wait
10. wait
11. wait
12. leave MDA just as evening rush hour is beginning – spend nearly three hours trying to get home
13. arrive home with just enough time to get back in the car and go to pick up 10 and 6 from their mom’s house (thank you, MY mom for doing that for me – you can’t begin to imagine how much that hour off helped)
14. realize that I have done all I can — yet rest assured that I have forgotten to do more than I remembered
15. See – knew I forgot something – pick up all Honey’s new prescriptions and try to deal with pharmacological misfortunes.
16. Shit – the dog! Forgot the dog. Good thing the groomer likes him (I think she just tolerates me at this point…)
17. try to sleep, fail, try again, fail, repeat ad infinitum
18. wake at 3:30AM when Honey decided that he was hungry…..

So really, it wasn’t a BAD day at all – just an extremely long and busy one. Vacay really started getting exciting after that.

Just wait….

Imagine for a moment – a smallish townhome with an open kitchen/dining/living area filled with big man-sized furniture, three children (6,7 and 10), two moms (one just a mom, the other a nana), one rather large man who is learning how to do many of the things that he used to could do with no thought at all (ie: shoe tying, walking, dressing, typing, etc –> all very frustrating tasks), his walker, three cats and a very needy schnauzer.

No, really, imagine this for  a moment or two – then promise yourself you will never try to think of such a thing again.

I really don’t think I can even begin to do this tale the justice it deserves -but I will try. Understand that I have to downplay some of these events because if I emotionally revisit, I may have to take a valium (or seven).

As best I recall, it went something like this:

The first weekend was rather quiet. Honey spent a lot of time sleeping, Nana was there any time I needed to escape run an errand. The kids were playing online games together with the two computers, Kitty brought us a collection of dead moles to show his gratitude for our return home. Really it seemed like we were going to be okay.

By Monday, I started to have my doubts.

All I could see was the wall in front of me that I needed to climb over to even begin to see my first hurdle in moving forward. I knew I needed to make the house handicapped accessible for Honey – I just hadn’t the foggiest idea of how to get started. I knew I had to keep on top of his medicines – but the lists were way overwhelming. I also had to learn how to monitor his glucose levels as he had developed steroid induced diabetes while in the hospital. I had finally almost figured out how to do the brain cancer thing, and now they were throwing diabetes at me. Not okay. So. Not. Okay. At. All.

I also knew that I had to take care of business outside of the home. My letter of insurance coverage had just arrived so I could get myself basic insurance through my work – and then we received a denial of coverage for 6 and 10 through state insurance (CHIPS) because we make too much money. Right – on our mutual disabilities and regular + medical expenses we have too much money for our children to qualify for medicare services.

The only way to rectify this problem that I could see was for me to add Honey’s children to MY insurance. Have I told you how much Honey’s COBRA is costing us? And that I was giving serious consideration to not insuring myself so that we could have an emergency fund if we needed it? Ya, that isn’t going to happen. We are now paying an additional $540/mo to keep insurance on Honey’s kids. That is actually $371 more than it would cost to just insure myself. No stress here. No anxiety, none at all. Hey, did I mention that one of Honey’s required meds costs $299/mo? And that’s just one of them… How cool is that?

Top priority (after insurance) was making the home accessible to Honey and his walker. To that end, we had to get a new front door and have it open from the other direction (left-handed instead of right-handed), build a ramp to the front door and have additional banisters added to the stairs. We had friends offer to help with these things – but that didn’t work out quite the way I had hoped. Our sense of urgency for these items simply was not at the same level as that of folk who don’t have to live with us me. I will admit to a rather slight bit of neurosis in my attention to Honey’s needs – but I am thinking that a ramp could have been built within the first week that he was home…. Really.

So – because I so hate to have conflict with friends – or people I am in relationship with, the housing adaptions were causing me a lot of grief. I needed Honey taken care of and I couldn’t get into a conflict with the friend who wasn’t helping us the way I  felt we needed. It was ugly. It made me cry. It brought my relationship with Prozac to a whole new level.

Understand, I am the administrative assistant in our home. I call the insurance companies, I call the doctors’ offices, I deal with pharmacies and their divas, I am the chauffeur, I am the mom, the wife and the caregiver. I can do all these things with strength and (usually) kind manners. I cannot do the same with people whom I know. This is my great personal failure. I am working to overcome this issue, but I have been less than successful thus far.

In an effort of avoidance, I got in touch with a contractor whom had been highly “recommeneded” by the customer service people at Home Depot. They came by, looked at the house, went to price bannisters and come back with a proposal of $450 for the ramp and stairs and said they could get ‘er done on Thursday. Our 2nd opinion came in with a quote of $465 to build the ramp, put in two bannisters (rather than the just one that I thought we needed) AND removed the carpeting from the stairs so that I can sand and finish them (so they will be less of a slip & fall hazard). AND, AND, AND they could do the work right away. It was more than worth the money to get the job done expediently and without conflict.

In the meantime, we were still adapting to some major changes in our world. The least affected of our (human) boys seemed to be 6. He just rolled with it – as long as he could use the computer or was otherwise entertained, he was cool. In fact, this week just past may have been the best vacation we have ever had with him. He has grown up so much in the last year it is simply amazing.

I think that 7 rolled with things pretty well. This has been his everyday for the past coupla’ years. He is also a really empathetic and just seems to accept the reality of his world without any great stress (so far, I think). The hardest thing for him during the week was adapting to not being the only kid in the house and having to give up his room for Nana. When there is only one child in the house, there tends to be less interpersonal conflict. T(7) needs to learn how to work out issues with his brothers – more to the point, he has to learn how to be a brother. Not easy. The hardest thing for him was when he asked his dad if he could spend the night Thanksgiving Thursday since he would be weekending with him anyway – his dad said no ‘cuz his girlfriend was in town. Seriously? What kind of a dad does that?

10, on the other hand, was having some significant problems dealing with the day to day. He is the closest to his dad. He and Honey have always had an extremely deep bond and they are both so introverted that they are unable to express their feelings verbally (or in any way that I understand and am able to help foster). The acting out of emotions that were apparent to me included such behaviors as lying, whining, ignoring directives, demonstrating lots of exasperation and acting out physically with the youngers. These were the minor problems that I had rather expected from all of the children. No big deal, I am a behavior specialist after all. This is what I do.

The more significant problems seemed to revolve around the bathroom. At one point both of the littlers (6 & 7) came downstairs saying they could not use the upstairs restroom because it was too disgusting. Now, I tend to try to avoid that bathroom b/c I think boy bathrooms are nasty to begin with – but this required at least a look-see in case I actually had to tend to anything (flooded commode, maybe?).  That would have been easy. Grab a plunger, go to work on the potty, flush and be done. No, this was not as simple or pleasant as a blocked toilet –> this was shit wiped on the shower curtain right next to the toilet at just about the height that a 10 yr old hand would be were the child sitting down.

Mind you, this discovery was made right in the middle of dinner. I toughed it out, took down the curtain and put it into the wash. Done but for the residual ick and ruined appetite. No accusations were made – all of the family (Nana included) were informed of proper toileting behaviors and it was let go. Until the next time something shitty happened. The next afternoon, 10 ran into the downstairs bath to do whatever it was he had to do. He got sent back to wash his hands and that was that (I thought). The next lucky person to go to that room was me. Probably a good thing. There was poop on the toilet seat, 10 was called back in and shown how to clean up such an unfortunate incident himself rather than leaving it as a gift for someone else. We got out the bleach-water (I know this is environmentally incorrect, but this was shit on the place where I was gonna put MY bum), a rag and some rubber gloves. (Initially 10 thought it would be acceptable to simply run the bowl brush along the seat – thus smearing it around rather than actually cleaning). Lesson was given, seat was cleaned, rag thrown into clothes washer so nobody else would have to touch it.

Done, right? You would think so, but you would be wrong. When I went back in to do what I had to do, I found soiled toilet paper lying on the floor next to the toilet. How does one miss dropping paper into the bowl by such a vast distance? How does one not notice that they have missed the bowl? What is going through the mind of the person who does such a thing? 10 got called back once again to clean up after himself and was informed in no uncertain terms that if something comes out of his butt, he is responsible for taking care of it immediately.

At this point, I was aware that something was clearly very wrong here. And that I was completely unequiped to deal with something of this magnitude. I called the counselor that the family had been seeing and asked for an emergency visit for Honey and 10 to attend together – without the rest of us. Hopefully, they will be able to communicae with one another and maybe 10 will stop punishing us in such a vile manner.

Oh, he (10) also smooshed silly putty into 7’s flannel bedsheets and blanket. I am never purchasing  silly putty again – there was nothing silly about this at all. And the true coup de gras was when he hurt a 5 year old at Thanksgiving dinner. Apparently, the 5 yr old started it by poking 10 in the stomach. 10 felt that twisting his arm would be the best way to handle such behavior. To be factual, it did stop 5 from bothering him – but it didn’t stop 5 from coming and telling me that my big boy hurt him. Nice.

One top of all this, Honey is still trying to learn how to compensate for the consequences of his surgery. He did a very good job of keeping his temper about him all week – thank goodness – or I might really have lost it.

So, THAT was our Thanksgiving break. Bet yours seems much better in comparison.

Don’t get me wrong – I am extremely thankful – I am also extremely tired and nearing the knot at the end of my rope.

There are more stories. They will come in time. I still have “the parking lot confrontation” and the “key incident” to tell you about.

Love you (and the day school vacations end)

Pressure – two weeks into it

I think this should be played on a loop in the background as you devour this post. Just an opinion – but I think the juxtaposition will prove pretty cool.

Today is the two-week anniversary of Honey’s surgery. There’s so much to tell that I am pretty unsure of where to start. I’d like to start at the beginning and go on to the end – but I am much too scattered for that these days – so this is more than likely going to look like a “stream-of-consciousness” reading activity. Which may actually prove very entertaining all things considered. I am visualizing a bulleted arbitrary collection of thoughts in no particular order.

Here we go…

• it is always COLD in this hospital room. Wicked cold. Like 70 degrees in Guam cold. That kind of unexpected cold that seems to invade your bone marrow…. You know the kind of cold that I’m talking about.
• we (I live here, too) have an awesome nursing assistant on this floor who could be a third in the Honey and Me comedy show. She has been a hoot to have around.
• for the most part, everyone here is great. I have never seen a staff work together as beautifully as well as MDA’s P-8 Team. And, ya know what? It makes the stay more purgatory-ish than hellish – so this is a good great thing
• although Honey is in the same room (P803 – in case ya wanna visit), he is now under the care of the rehab team rather than surgery. He has OT, PT and Speech/Language Therapy every day this (and last) week. Apparently PT is therapy for basic/large muscle skills (walking, moving – controlling the body in its space) and OT is for things you do during everyday living (shoe putting on, getting dressed, teeth brushing, etc). Twenty plus years teaching special education and I just learned this now? While I am glad to have been enlightened – it is kinda embarrassing that I didn’t know this before.
• Honey is doing a fantastic job with his OT, he has made super-huge progress in the past week. Last Monday, he couldn’t control his left side much at all. He certainly could not pinch or grasp anything. Today, he picked up a tissue. (It is so the little things that make such huge differences.) I will know that he has totally mastered his OT when he can pick his nose without blackening his eye.
• PT is another challenge. He is doing a great job with his walker. He talks to his limbs – reminding them of what they are supposed to do in order to move him efficiently and safely from one place to another. My dad used to do that following  each of his hip replacements. I remember him climbing stairs saying, “up to heaven – good leg first; down to hell – bad leg first”.
• Speech/Language is pissing him off. For my SpEd friends – you will know what I mean as I explain his issues. Because his tumor was in the right parietal area of the brain, his left side was impacted physically. His math base and problem solving skills have been hidden from him at this point. With mind/brain exercises – he can rebuild new pathways to some of the information that he is currently unable to access. He is having to do tasks that will provide a baseline for the SLP to develop a program for him (an adult IEP, if you will). These tasks include tracking (left to right) through a line of print and circling a certain word as many times as it appears in that line. He finds such juvenile work to be offensive and humiliating (I think the humiliation is linked to that fact that he is finding himself working hard to do things that used to be second nature.)
• Honey is a much stronger person than I am.
• I am a much stronger person than I ever thought I could be.
• I dropped my brain somewhere along the path last week and have not yet been able to find it. Even with a list, I can’t seem to get much of anything done in the time that I am home except to walk around the downstairs looking for something – but I am not quite sure of what I am looking for – therefore, I never find it.
• My mom arrived from California this past Saturday late night. I left MDA at 10:20 to get to the airport for her for 11:20pm arrival time. Her plane came in 20 minutes early. I kept making wrong turns because I was approaching from the south instead of north. I so totally was not there when I wanted to be, Mom had no checked baggage so she waited a bit of time for me to rescue her from IAH. I drove her to our house in The Woods – told her I had put clean linens on the boy child’s bed and turned around to go right back to MDA. She has been here three full days and I have seen her for maybe five hours total.
• Next week is Thanksgiving vacation already. Damn.
• Honey gets dismissed from MDA on Friday. Vacation starts on Friday. This is our year with three children over the holiday break. My mom is also here.
• I looked forward to school breaks so much more when I was in the classroom. Vacations were even better before I had children to share them with. Ahhh, the memories. I remember being able to wake up when I got around to it, eat what and when I wanted, do absolutely nothing all day if I so desired – I remember when I lived the life my children live now.
• I am afraid of what next week will bring my way…. maybe I need to put myself in long-term time out now.
• Big Lots has fleece sheets for sale for $20. Can you imagine sleeping in fleecy loveliness this winter? I believe I NEED to get me some of these.
• I recently realized that I wear yoga clothes about 70% of the time. I have never taken a yoga class. I gave up wearing my fleecy jammies outside of the house last year for Lent. It looks like I simply substituted a more acceptable form of lounge wear for public viewing.
• I believe more and more that we actively choose the lives we live and then stumble around trying to do our best to live them well. I am not quite sure of the lesson I thought I needed learning this time around – but I hope I’m doing it right – it would suck to have to take a redo here.
• Baxter and Kitty are having a tough time with me being gone. Kitty disappears and comes back when I am home and then he and Baxter are both trying to climb up my leg whenever I stop moving. If they were my children, I would swear they were trying to reclaim my womb.
• Carl and Soren are pretty much content with each other. As long as there is a soft chair to sleep onand food in their bowl – they are okay.
• There is an anole in the downstairs bathroom. Both my mom and the boy child are using the potty upstairs exclusively. I tried to return the lizard to its natural home out front, but he kamakazied off the sink to behind the toilet and then I decided if he wanted to stay in there that badly, I might as well let him. Since he is no longer on the sink – one of the twins will likely find him and I will be vacuuming up lizard legs tomorrow.
• I am tired. No, I am weary. Maybe exhausted is the word I’m looking for. Too tired to tell for sure.
• I love you (and lists – I really love lists)

 

1st post surgery update (sorry for the delay)

This will be the third time I have started this particular blog entry.

Somehow I have lost the first 2 attempts. Which is not at all that surprising all things considered. I will get to this later – right now, let me tell you how Honey’s surgery went.

It went so much better than we expected it would.

They removed a 5cm x 7cm recurrence of the original cancer from his right parietal area of the brain (that is pretty big, by the way). They got awfully close to the motor cortex (or the tumor got awfully close to the motor cortex) so there is some left side paralysis. Honey has all of his strength – he just has no feeling as to where his limbs are in space. (think when your leg is asleep BEFORE pins and needles set in).

Honey will be staying here at MD Anderson Houston (main bldg – rm P803 – phone # 713-834-8711) for at least another week for inpatient physical and occupational therapy.

He is learning how to use a walker now and he is doing a really good job. He orally reminds his limbs what they should be doing and where they should be doing it. I think this might help him to reroute the neural connections that make such tasks as walking, picking things up, wiping your butt and scratching automatic.

His scar looks so wicked cool! DrL did some reconstructive/cosmetic work on Honey’s old scar when he was in there. For any who remember, he used to have a rectangular cut with very thin skin covering over the plate. The dr filled in his divets and did a super nice job on his stitching. And, ya’know that chicks dig scars,so Honey is a pretty lucky guy in so many ways.

He’s also in a really good mood. (I blame the steroids) We have been having a great time with the nursing staff here. They may need to stop being so nice to him. I think he is beginning to realize how much better he has it here than at home…. ‘Course, these people are being paid to treat him well…

For the past couple of days, I have been running around and around and around. I went home for about 5 hours yesterday and all I got done was to put like,maybe 5 bowls and some silverware in the dishwasher and set that to clean. I made sure the animals were fed and took a shower and shaved. It was the most I have accomplished in I don’t know how long. The rest of the time I was home, I spent walking around the living room and kitchen looking for stuff that I had just had in my hand. Apparently, I would put things down and they would get sucked into the invisible black hole vortex that exists somewhere between the dining area table and the sofa in our downstairs. Four hours of looking for stuff I had just put down and half the time I couldn’t even remember what I was supposed to be looking for – and no, I never found any of my lost trinkets.

I did get around to checking the mail – finally my letter of confirmation of insurance came in. Now I will just need to make an appointment with KISD to switch up my insurance. I think mine is only going to cost about $250/month – so that is awesome. Well, awesomer than Honey’s $485-ish COBRA anyway.

ALSO – I got a wonderful goodie basket from a friend we met over the summer at OCF. She sent teabags, candles and See’s chocolates. I love her. It is always a wonderful surprise to be remembered by someone and an even greater treat when that remembering involves tangible rewards.

My brain is a little tired. I want to get up to church today, but will definitely need a short nap prior to getting on the road- so I am signing out now – there is so much more to tell – will shoot for getting back to you this afternoon.

Love you (and See’s chocolates)