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 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)

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)

 

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)