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)

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)

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)

I got this big giant cup’a half-full here

I’m thinking it might be holding piss and vinegar – but it is still clearly leaning on the fuller side of the pendulum’s swing.

Also –

Morgan has been approved for the Delta 24 trial.

His operation is scheduled for 10/30

This hinges on some pretty significant caveats, however.

His platelet count is now 91, it must be over 100 for surgery. We are walking a lot to try to build those up.

His liver numbers are a little too high right now. I believe he is at 114 and he needs to be below 112. No idea what to do about this but keep him drinking lots of water.

He will also have to have another MRI prior to surgery to make sure that Blob is not growing too quickly for the virus to keep up with.

**I think if that happens, they will perform a craniotomy; remove as much tumor as they can and then inject the remaining bits of Blob with virus.

**I HOPE if this happens that the above proves to be true. **Also, with surgery comes the very real risk of permanent left side paralysis.

The current thought regarding the pain he has been experiencing in his hip/femur/knee is that the Carboplatin really did do in his marrow.

We knew this was an eventuality — but knowing about something hardly ever makes experiencing it a whole lot easier.

The situation is even a little more tense because Honey now has to be off all pain meds until surgery.

Ibuprofen was helping some – now he can’t even take Tylenol. (and Tylenol is crap for pain-killer anyway.)

There is so much to think about, so much to plan for, so much to fear. But then again – there’s not….

The surgeon’s PA wanted to be sure I was okay with the procedure. She wanted to review everything to make sure I totally understand.

Which, while I appreciate the effort, I find to be a massive waste of time.

I feel it can be broken down with just a couple of questions kinda like these:

  1. If he does not get in this trial, will he get better? (no)
  2. If he gets in the trial, might it help him to get better? (It might)

Ummm, where’s the damn paper – just let me sign and please let me go home to process.

Love you (not loving this all that much, though)

More than $8043 in just this week

lots of info – little time/space – patience is going to be a major virtue (for me from you – please).

Okay – recap: Honey terminated from BigCorp.
Thus Honey’s insurance coverage expired on 9/30/12.
Honey’s UncleH in CA paid for the first month of COBRA (I think I told y’all that Honey’s family is trying to help as they can.) And we were so on top of things, that the Bank Check H sent actually arrived before 9/30 and there should have been absolutely no gap in coverage. Right? Yeah, not.

Two days after UncleH pays BigCorp, we get a letter saying the check has been destroyed as it was made out to the third-party (COBRA Connect) rather than BigCorp. Were this a regular check, I would have been upset but would have gotten another check off immediately. However, as I stated before, this was a Bank Check. Not as easy as all that. BigCorp dumbasses essentially destroyed $500 in cash. And then expected me to be sorry. Well. I was – but not the way they wanted, I’m sure.

Called BigCorp, let my head explode all over them for a bit and got pushed up the administrative ladder to someone who was at least kinda competent to speak with me about how I should fix the (their) error in order to insure that Honey is covered without any gaps….. I was told that they would send a copy of the voided check to UncleH – so that he could get a new one and have it endorsed to BigCorp rather than COBRA Benefits. So, you would think that most of our problems are being addressed. Insurance really is the great big scary deal that I am currently totally focussed on.

So – this is where this story starts to get interesting (and borderline comical).
Yesterday morning, I had to go pick up one of Honey’s seizure medicines that I had sent for refill the day before. First thing upon arriving at the receiving counter – I was told that there was no Topimax in the building and that we would have to wait until 4:00PM for his morning meds. I was already in Mama Bear mode – so this didn’t bode well for the pharmacy tech. I asked if they didn’t have just ONE freaking pill? Or could they not have called me the day before to give me a heads-up? Tech-guy goes to check if there are any at all and comes back with a full bottle in his hand saying he just can’t understand how such a thing could happen… (These kinds of things really don’t surprise me anymore) and if I gave him just 5 minutes, he would prepare the scrip for me.

Ten minutes later he is back telling me that Honey’s insurance denied the prescription. Right, this would be because they still haven’t gotten their money in a way that works for them. Honey NEEDS this medication. Not getting it is not an option, so we paid $299 for a month’s worth of generic meds. Yeah – yeah, that’s what I said: $299 for GENERICS. No shit. Now things are starting to look like they might get a little tight… But still, we can do this. Hoo-rah.

Good on us then, meds picked up. Our good friend in driving Honey down to MDA so that he can get his MRI and be all ready for his appointment today (in which we should find out if he is a candidate for the Delta 24 Trial).

So, there I was, at home, alone, reading on my patio. Not aware that my phone, which was plugged in to charge was not doing its job either. At 2:45, another friend showed up at our house telling me to call Honey b/c there is an insurance issue with MDA and AETNA. Fucking great.

I call. I speak to Honey. He tells me insurance won’t pre-approve his MRI and wants me to give him some numbers(?) about something, something, blah, blah,blah. I have no numbers to give him because COBRA has not yet been paid for – but we do have the money in our checking accnt b/c Honey had to sell back his company stock upon termination (see how nicely these things work out for us? Silver Linings, I’m tellin’ya.). Informed Honey to put the MRI on our bank card or a credit card and that we would get reimbursed later. Not the best situation, but still do-able.

Then, I went to pick up the 7 yr old and toodled around doing some errands with him. When we got home at 4:30, Honey was already home. Crazy, b/cit normally takes an hour+ for the MRI and then another hour or so to get home from down town. He was at least 45 minutes early. so very not good.

Apparently he skipped his MRI. Either b/c he didn’t believe me about the $, or because he forgot, or because he was too frustrated to think clearly. Really doesn’t matter why this happened. What matters is trying to fix it right now.

As you know – my go to person in a bind is DrC’s SuperNurse(SN). I left a message telling her what was up and asking if we should even bother to come down to the hospital for our Friday appointment as the precursory work wasn’t done.

Now, mind, I am not angry. I don’t have the energy for angry (either that or the Valium is REALLY doing the trick for me) but I am very resigned and worn out. I don’t know how to take care of Honey if he won’t listen to me or disregards what I tell him. Ya’know?

SN called in at 7:15 this morning. She said we should still come down b/c we were supposed to meet with Dr.L (Delta24 guy) to talk about the trial. She also said that she would try to squeeze us in for an MRI somewhere today. (this is why I have time to write now – Honey is in imaging, thank God).

Dropped 7 at school, turned around, picked Honey up and headed straight away downtown for Honey’s 11:00AM appointment. We arrived at 9:15, saw DrC early and got squeezed in (literally) to an open slot in the MRI imaging center.  Oh, and by the way, do you know how much a contrast MRI costs? The receipt in my hand is for $7062.00. Blessings abound – we have just that much right now – we still have a half a tank of gas and the kids are all with their other parents this weekend. We may make it through this next month without having to sell our children. The animals may no longer be eating canned food, but the humans in the house should be okay.

It is 12:29 now, Honey’s appt w DrL is in half an hour. I will be very surprised if we make it back to the burbs in time to pick 7 up from school – so I have to start worrying about that soon. I think I will wait until two before I let the panic regarding who to ask to pick him up set in… I did at least tell him that I may not be there today and to look for a grownup that he knows (likely CJ from church) to go home with. I hate to have to do that – but I am stuck. It’s a good thing 7 loves me and is understanding of some of what I am trying to accomplish here, because I feel like he ends up being the one paying the most for all of this.

Love you (and Valium)

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