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)

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)

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)