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.

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.)

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)

Fun With Hospital Forms

Well, we are back at MDA for the day.

Waited about an hour for his first appointment where they stuck peach colored foam things on his head that look like bunion pads. I will attach a photo later (if I can figure that out – it’s been a rough week thinking-wise).

Then came on over to the Mays Clinic (took the golf cart) so that Honey can get his last MRI prior to tomorrow’s surgery.

Upon arriving at the MRI Imaging center – we were given the customary forms  to fill out. I’ve done them so many times, I don’t really even need to read the questions anymore. I know where the yesses and noes go and can pretty much whip right through them. Today, I think I am a bit on the punchy side – when we got down to the questions regarding his level of comfort in the MRI machine. Their questions and my responses are as follows:

1. Q: Can you lie flat and remain still? A: Yes, but only if you duct-tape him to the table
2. Q: Does being in an enclosed space make you nervous or fearful? A: No, unless my wife is in there with me.
3. Q: How can we make this experience more comfortable for you? A: Play Barry Manilow.

Wondering if they actually read the forms….

Today is Honey’s 42nd MRI. Wednesday will be his 43rd.

I am thinking of throwing him a surprise party for his 50th. What’d’ya think about that?

Will check in later today/tonight after we finish running the gamut here.

Love you (and the arcane)

Here We Go Round The Mulberry Bush

Allow me to go back to yesterday morning to set us up here.

I tried to blog this all yesterday (while I was sitting at MDA waiting for Honey’s MRI) but it would appear that I neglected to save about 500 words of what was happening in our world and now I need to recap when I have new stuff to tell – which sucks.

On Monday night – round about 11:00, I let my OCD kick in and went to mymdanderson.com to check Honey’s schedule. Very good thing I did. He was set up to have an MRI and blood work yesterday afternoon and then an appointment with DrL this morning to find out what his treatment plan is going to be now.

Since we already knew something would be happening for him on 10/30 – I hauled him in to vote yesterday morning. It was his first voting experience (having grown up JW, voting wasn’t on the list of things he could do. Now that he is a UU, he has a veritable responsibility to do so. He said it wasn’t a huge, monumental event or anything. (To me it was.)) He got his “I voted” sticker – he thought he could live without it – I wanted him to have the whole voting experience so I stuck one on his back on our way out.

Scurried around trying to find school pickup coverage for T. Since it was Tuesday, it was a dad day for T. Unfortunately, T’s dad could neither pick him up at school nor keep him overnight (we had to leave home at 6:30am to make it to MDA on time this morning). Fortunately, Chris-With-The-Long-Long-Hair was able to pick the boy up at school and we made it home just before 7:30pm and were able to pick him up from dad’s on time. (Good thing, too. We were given a grace period of only 30 minutes before we would have had to find an alternate pick up for the boy.)

This morning T came with us to see DrL. Because he is such an empathetic (as well as empathic) kid, I thought it would be helpful to have him hear what was going to happen from the surgeon – also, we had to leave the house at 6-freaking-30 this morning, so with us he came.

We left home on time (and mostly all awake) and drove through Whataburger for breakfast. By the time we got on the feeder road, Honey had already snapped at me and T no less than 5 times. I had to do that “pulling over on the side of the road” thang to (quietly yet firmly) let Honey know that he could stop any time. We did actually get into our appointment on time (I know, huh!) and the only sound in the car the rest of the journey was the radio. Thank goodness for the radio.

So, the news. Honey is not eligible for the Delta 24 trial. His platelet count is too low. It is still well under 100 – and we have been taking walks, even. Everything else is fine. His Liver function is now normal (but he is still not allowed to drink), vision is good, there may be some differences of opinion on well he hears, but I suppose that is true of many people. He does however have thrush now. He came off antibiotics just over a week ago, I would have expected this when he was still on antibiotics – not now.

Honey will still have his craniotomy on October 30th. They will now be doing a removal of the lesion rather than injecting it with virus (think melon baller). This will be followed up by some new treatment, we just aren’t quite sure how that will present itself. He really can’t have chemo again as his marrow is just too beat up – so we will find out after surgery what the next step will be.

There are a number of possible outcomes to this surgery. One that is most likely to occur is paralysis in the left side. This could be sensory (he won’t be able to tell where his limbs are in space) or physical to the extent that he cannot move that side. The doctor is already seeing loss of strength in that side as well as “drooping” of the left side of his face – so the paralysis is here already – but removing the golf ball in his right parietal and motor cortex will likely increase this effect.

At any rate, surgery will likely take 6 – 10 hours followed by about a day of medically induced coma while swelling/draining (ugh) is taken care of – or whatever they do during that time. Then, he will be in ICU for a coupla-few days and more than likely in some other part of the  hospital for a few more days before he is sent home.

Honey’s family will be here during the actual surgery, my mom is going to come in November.

Funny, no matter how old I get, it’s still MY mom I want when things get to be too much.  Is that a universal? There’s nothing anyone can really do to make things better – but I KNOW that if my mom were just here, things would be okay(ish). She is like magic that way.

Love you (and that Honey got to vote)

H’okay. We have (most of) our ducks in a row, here

Today is the 22nd of October. Surgery is scheduled for the 30th of October. That is eight days away. During this upcoming eight days, we will have a weekend so those two days don’t really count, cuz nothing much can get done on a weekend. Honey will have to be at MDA super-early on the 30th, so that really takes away another of the eight days we are starting with. So, I have essentially five days to get the rest of my ducks in my row.

On Friday (at about 4:00pm) I received a phone call from MDA saying that since Honey STILL had not been approved through AETNA’s COBRA plan, there was nothing to be done for scheduling presurgery appointments. As I had already paid up front his most recent MRI ($7000, btw) I asked if we couldn’t get on a payment plan just so that we could proceed…. I’d be willing to guess that you already know her answer was, “no.” We can however prepay for surgery – which will only be $100,000 before we include the anesthesiologist and any other incidentals.

Awesome, huh?

So there I am in tears/actively sobbing – asking the lady at MDA what I can possibly do to make things different. I have been on the phone every day – multiple times. The people at Direct Connect COBRA now recognize my voice when I call in. We chit-chat. What else can I do??? Really, tell me. I’ll do it. Really.

So, there I am, at 4:30 on Friday afternoon, wondering why it always comes down to 4:30 on a Friday afternoon, feeling totally defeated and helpless.

I think I yelled at the guy at COBRA that my husband needed this surgery and they either needed to get on their shit or deal with the fact that I would hold directly responsible for his death if he couldn’t get surgery due to their lack of timeliness. I believe I may even have dropped a few “f-bombs” in there as well. (Which, in case you were not aware is not nearly as satisfying as you would think.) I really did not think I had any anger left in me at this point. Guess I was wrong. I am a wellspring of unexpected emotional reactions.

So, having gotten no valid help from COBRA, I called AETNA and got one of the Accolade nurses (Jennifer) on the line. Have I ever mentioned how much I love our Accolade nurses? If you are covered by AETNA – get to know your Accolade nurse – they are the ones who get things done. (kinda like school custodians and the front office folk in any corporation).

Jennifer (I use her real name b/c she is my new hero – and since I don’t know her last name I figured she’d be safe from any stalkers coming off this particular blog entry) stayed on the phone with me for well over a half an hour (much of the time spent on hold) until she could actually get through to someone who could contact someone who knew someone who would still be at AETNA and could/would push Honey’s paperwork through then.

SO, since 5:15PM on Friday the 19th of October, Honey has COBRA coverage. Woot. I had an absolute breakdown. I couldn’t stop crying. This had been such an ordeal – that having it off my plate left me rather at a little bit of a loss. So – this would have been one of those good-kinda emotional breakdowns, not the scary, nutters kind of breakdown.

Still waiting for my certificate of insurability so that I can reinstate my healthcare through my school district. Good thing I took care of all my doctor appointments in September. I should be good until the end of October anyway – I might even last through mid-November barring anything unexpected (ha).

Apparently, BigCorp has not yet informed Prudential that Honey has been terminated. His life insurance still indicates that he is on long-term disability. This only caused me minor panic. I worry – especially now – about his having life insurance. Mostly b/c we’re fucked if it lapses. I don’t want to be one of those women standing at the freeway off-ramp with a sign saying, “Husband just died, can’t afford funeral. Please help.” And, yes, we do see that here – only it is usually mom who just died.

So, things are better here (stop it with that face, it’s all relative).

Oh, and speaking of relatives… Honey’s sister will be arriving from GB on Monday at 4:00 and his mom and step-dad are driving down from North Carolina within the next couple of days.

I don’t expect I am going to have much time to focus on worrying with all that will be going on. (I Hope.)

Will let everybody know anything new as it presents itself.

fingers crossed, oracle readings, prayers, good thoughts, healing light, we are taking it all.

Remember, please, in my father’s house there are many rooms. Let’s try to make sure Honey’s name is being spoken in all of them.

Love you (like you can’t begin to know)

Now, THAT is love.

There is so much that I have totally neglected to blog that I have a backlog list that will last well into the next week if I wrote every day.

Let’s test my hypothesis, shall we? (I love when T says things like that because it sounds so odd coming from a child who attends public school – I love T’s school by the way, they don’t let him get away with shit. I am hoping the lessons on taking work seriously stick in 2nd grade and don’t have to be revisited every year.)

Anyway – today I am choosing to write about on of the most recent events in our life. Mostly cuz it’s a true showing of what love is and also because I could use the emotional boost today.

I have a friend of 16 years who is probably the most grown up, financially wise and frugal person I have ever met. She doesn’t skimp in any of the areas that are important to her, yet she is still a GREAT saver. She takes care of herself physically, financially and emotionally ~ and has found her “the one” who helps take care of her in all the ways she didn’t know she was missing. She is another of my chosen sisters who has earned her healthy relationship the hard way – but don’t we appreciate it all the more when we have to work at it?

I think my favorite story about this friend is very telling about her personality and her value system. A number of years ago, while she was in the process of dissolving her first marriage (you know, the practice one…) she was essentially homeless for a year; she house-sat, she worked at a gym, she cleaned folks’ homes and somehow she managed to end that horrendous year $20,000 in the black. She is truly amazing and I think she should use her degree and her experience to work as a financial motivator (or some such thing).

She has faced her demons and come out of the battles a fantastically gracious woman. She is among the folk that I consider my “soul group”. You know, that group of friends and family that you still choose to hang out with when you are an actual grown-up and don’t necessarily need to spend time with people you don’t like all that much (even if you do feel a little guilty you know you have those people in your life).

I am so making this short story into an epic novel.

I received an email a week or so ago asking for my address as my darling friend wanted to send us a “Happy Family Day” card. She is so thoughtful that way…. My in-laws, Honey and I (and sometimes the boys) remember the date (10-10-10 is binary for 42, so it’s actually quite easy for us to remember [Google it]).

I love getting real mail and am going to be dreadfully saddened when all correspondence is verbal or electronically delivered. So, I was keeping an eye on the mail box looking for an envelope where my name and address were not showing through a window.

The card came. I rushed inside to give Honey his window mail and tear into my real mail. The card was wonderful – but when I opened it to read the message inside I just about lost the show. Tears streaming down my cheeks (just short of hyperventilating) I handed the card to Honey  to see.  Inside, my frugal friend had included a check with a note for Honey and I to do something fun for ourselves with.

Darling, we did have a great time on you. Thanks so much – you sent us back to Texas Renaissance Festival for the anniversary of Happy Family Day. Each of the boys also got an item to contribute to their costumes. 10 got elf-ears, 7 got a bow and quiver w three arrows and 6 got a battle-ax. Not quite sure what I was thinking when I approved the last two purchases, but there has been no bloodshed yet, so we’re okay so far

Darling you also sent me to see my TRF medium. Do you remember Shelby? I didn’t learn anything I didn’t already pretty much know, but it was very soothing to be told that I am just right where I belong right now. Ya’ know?

Love you (and you, my friend)

Am I surprised? No. Resigned? Yes.

I told all y’all that we were supposed to have had an appointment with DrL, Honey’s (neurosurgeon) today – but that it had been cancelled due to lack of open surgery slots in the near future. We were told that Honey would be rescheduled with one of DrL’s cohorts early next week. Disappointing, but not wholly unexpected.

So, I went to mymdanderson.com this morning to check and see if a new appointment had been scheduled and if so with whom. Honey’s calendar showed that he has an appointment with DrW – a surgeon whom we met in July 2011 when he attended our appointment as DrL’s fellow or some such thing.

So, we’re good. No pre-existing plans for Tuesday morning – just gotta’ get the boy child (T) off to school and then shoot on down-town to hear what’s what with Honey’s treatment plan.

Easy peasy lemon squeezy. Not too long a wait, I can handle it with little or no problem I think. THEN it happens. Yes, again Honey’s appointment has been cancelled – no rescheduled date/time as of yet.

SuperN says that DrC and DrL have to sit down and discuss Honey’s progress/lack thereof/whatever. She said she will call on Tuesday after DrC has had a chance to conference with DrL about Honey’s case and whether he will be a good fit for the gene-therapy trial.

I realize that this is neither positive nor negative, but I am struggling.
I don’t feel very at ease or confident about this whole thing.
I don’t feel particularly anxious or worried – but ambivalence tends to not be an emotion or state of being that I visit very often. And, it tends to be rather an uncomfortable hang-out when I find myself there.

So, SN says that she will be in touch on Tuesday. I am sure that we will have to drive the drive and wait the wait regardless of what the neuro-surgeon’s team decides to do.

I hope that the news we get is good – I pray Honey is an ideal candidate for the trial. But I am not pinning all of my dreams to that possible scenario. (There are some hopes hanging in that corner – but I have been trying to diversify and minimize my expectations in an effort to curtail my exasperation/depression.)

At any rate, just wanted to keep y’all in our loop. I’m trying to think of some platitude that works nicely here – but I got nothin’.

OH WAIT – I do have something positive to tell you. Surprised, huh? I received a phone call from the insurance office of the ISD for which I work, informing me that if I didn’t get my suppl. life insurance payment in by Friday, my policy would be cancelled. To you, this may sound like a “not good” thing. To me, it was a lifesaver. I had no idea if I was even still employed by my district because I did not sign a new contract this past summer. I was pretty sure that I was going to be spending the upcoming year bartering with various specialists to get my medical treatments and labs done. Now I know that because I have had a “life changing event”(Honey got terminated and I am losing my health insurance coverage through his work) I can get re-insured through BC/BS without having to worry about my pre-existing conditions [fibromyalgia compounded by major depression (situational)]. AND, AND,AND (wait for it…..) it will only cost in the neighborhood of $350/mo to keep me covered. This is significantly less that it would cost to put me on Honey’s COBRA. Significantly.

We have family who have offered (nay, told us they would) help with insurance costs starting in October. As a Yankee, it is super difficult to ask for or accept help (especially financial). I grew up keeping a stiff upper lip and doing everything in my power to solve my own problems. This whole accepting Grace thing has been really kinda discomfiting to me. But I am learning, and I think it makes me a better person.

And, on that note – I would like to thank my family (both blood and spiritual) for your constant support and for allowing me to struggle but being ready with a hug when I realize that I do in fact need one occasionally.

Love you. Really, really love you,

~ Me