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

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The Ugly Truth

I usually wait until I have had a chance to process before I publish a post. When I don’t, they tend to get written on my phone and look very eecummings-ish. They also feel a little more raw when I go back and revisit them later.

This one is being put together as an attempt to assist in the processing process. Hoping that stream of consciousness writing will maybe lend me some insight into whatever it is I am keeping from myself this time.

I often feel really isolated. The only adult I see most days is Honey and he is such an introvert (even with me) that many days I feel that I am here on my own. That I am biding time or am hanging in limbo, you know? Lately, Honey has been getting tired pretty easily and we really haven’t done all that much. I did join in on his regular Wednesday lunch date last week. It was nice to see another grown up. I think I may need to see more of them. Maybe even more often, too. And, perhaps, without Honey.

Sometimes I get so angry. Like super pissed angry.
I would say that I get mad — but my mom would correct me that dogs get mad, people get angry. Although I do think that as a definition of how I’ve been doing, perhaps mad (with all its crazy connotations) is just the right word.

When I start feeling down/frustrated/irritated/annoyed (even just a little bit) – I find myself getting all caught up in this ridiculous web of overwhelming emotions. As a natural extrovert – my most effective manner of coping is to talk out my concerns. However, for this to work, I need to have a listener available; an active listener would be best – sadly, I have found these to be in short supply as Kitty will only hang around for so much deep philosophical whining before he is done with me and Honey is non-responsive more often than not.

It’s almost funny, I have so much SpEd and AB counseling training that I automatically go into “I-feel” mode when I am out of sorts so as not to sound accusatory (which I don’t think is really that effective – especially if you’re talking with someone who has any kind of higher education). Well, Honey apparently listens to me, he says he hears me, but he doesn’t acknowledge me; which leaves me feeling unheard (see there’s that “I-feel” thing again) so then I restate my issues in new and easily understandable language – yet he still responds with a glassy-eyed look. And then my head explodes – all over the room like a 10 minute condition 1 typhoon. After that, I am just left feeling guilty and cranky and having to apologize – which I really don’t like at all.

You know what else really sucks? It really sucks that I feel as if it is my job to put on a good front and make other people feel less uncomfortable with our situation. All people can say when they find out about Honey’s cancer is,”Oh, I’m sorry,” and then they ask questions related to treatment procedures –> or they tell us about a doctor who is doing something-something-something that is totally not approved by the FDA but is the only thing that works against brain cancer and we need to google his name or call or whatever – and I know that this is all because they love us and want to help and don’t know what to say or do, but I already feel totally impotent and really, it just adds to the pile of shit that I am already trying to cope with.

This past weekend wasn’t a particularly good two days for me. I was/am still trying to make sense of our appointment with DrC  and am less than impressed with the continuation of the hurry up and wait situation. And, I have not been sleeping well. Although I’d bet if I remembered to take my bedtime meds for fibro/pain management I would be sleeping much better…  (don’t even go there –> I live in Texas, not California. Pain management is a whole ‘nother  beast here)

So, I have been confused, scared, tired, frustrated, sore and did I mention tired and frustrated? Yeah, I have also been feeling particularly tired and frustrated.  They’re such omnipresent feelings that they deserve to be mentioned twice. Oh – and before I forget, those behavior-personality changes Honey has been experiencing as an unpleasant side effect of the steroid that he’s been taking these past few weeks? Really not making things any easier.

I received a call from SuperNurse yesterday. She told me that she had to cancel Honey’s appointment with the neuro-surgeon that had been scheduled for today (good thing, because I was totally unaware that we were supposed to go down town today). Apparently, Dr. Lang can’t meet with Honey because he doesn’t have any surgery times available. She said she is going to set up an appointment with one of his cohorts and that we should keep an eye on our mymdanderson.com calendar. I asked her if that meant that Honey was a good candidate or if he had been accepted into the trial. Her response: “They need to review Honey’s medical records as of yet,” and that we would find out when we meet with the surgeon. Honey feels that this is an implied yes – that he is going to be accepted in the trial. I, on the other hand, still remember meeting with Dr Lang last July. He was the guy who told us we could not find a reputable surgeon to operate on my darling. You may remember me bitching about that in a previous post. So, anyway, I am holding out on getting myself all worked up until I actually hear that he is scheduled to go in for surgery.

Love you; hate not knowing what’s next

~ me

All things old are new again

So, we officially know absolutely no more than we did yesterday. Blob still appears to be stable (doesn’t explain Honey’s headaches or seizures…). FDA approved 9 more slots for phase one of Dr. Lang’s trial. Maybe Honey will be a candidate for the study… Dr.C can’t say, but Honey has to have been on a stable dose of steroids for at least a week prior to injection if he does get approved – so we are currently playing with that. Dr.C pretty much told us nothing. But I am slightly placated that we got in to see him at all.

Damn those silver linings

So, here we are.

We got Honey’s letter of termination on the 5th. Just one day after the act. Very, very efficient of BigCorp HR Dept. Unfortunately, their benefits department isn’t nearly as together and organized.

It has now been 8 days (six business days) and we have not yet recieved Honey’s benefits information. I contacted that same person from HR who heads-upped us regarding his termination. She knew who I was pretty much right away; she listened to my concerns and then proceeded to inform me that the different offices of BigCorp do not work together to get information out in a timely (for the former employee) manner. We will have coverage for 31 days after the date of termination, so we are okay until October 5. Which means that I am hustling to get EVERYTHING done that must be done before the end of this month.

I spent no less than five hours on the phone yesterday trying to gather relevant information from BigCorp and schedule appointments for each and every one of our doctors and specialists. You would be amazed at how many of them we have. I was able to find out how much COBRA will cost. To maintain the level of health insurance we currently have (employee and family) will cost roughly $1060, Honey and the boys will run about $900/month and just Honey will cost $487 and change/month. Fidelity says that we can continue his life insurance for under $200/month. Given this information, we can only afford to keep Honey on COBRA.  I’m seeing my shink and my neurologist tomorrow and then Pain Management closer to the end of the month. Will be going downtown to meet with Honey’s MD Anderson Cancer Center Neuro-Oncologist on Friday.

I’ll have to conference with my fibromyalgia specialists (neurology and pain management) to find out if  there aren’t arrangements to be made if I continue with them as an uninsured/cash-at-time-of-appointment patient or if I will need to start going to rediclinic. I need to find out if there are $4.00 prescriptions for the medicines I take. I also need to find out when there will be a generic of Lyrica available soon or if there is a trial or study that I might be eligible to join in order to help defray the cost of maintaining my  current standard of health (phew).

Because Honey had both a CatScan and MRI (with and without contrast) over the weekend, he won’t need to go to Houston on Thursday for repeat scans. I need to remember to actually get to St Luke’s pick up the MRI films – wait – I don’t think I will get films – do they still have films? (I hate when I date myself that way) Anyway – I need to go to St Luke’s and pick up Honey’s MRI (in some form) so that I can bring it with us to DrC  on Friday.

Optometrist today for both of us. I almost felt ashamed when I contacted The-Store-That-Shall-Not-Be-Mentioned (you know, Voldemart) to make our eye appointments. Isn’t funny how far we fall? Just four years ago – I was singing their praises when they introduced  $4.00 generic prescriptions. I was unemployed and uninsured at the time. Huh… the more things change… I cannot justify designer eyewear prices this year and this store allows the opportunity to get designer frames at generic prices – weighing values vs finances = rough.

At any rate – I busted my hump today creating a workable schedule for the rest of this month. I was almost getting ready to take a deep breath and let the stress of the day go. I had parked my butt in the recliner, grabbed up a box of Whoppers (the original malted milk ball) and was so ready to reward myself. I had just grabbed a toothpick to try to rid my molars of masticated malted milk when I realized that  have had another tooth fall apart. It’s a back one so that is good. It is in the lower left six year molar. That is not quite as good. Not one that can simply be yanked out to solve the problem. I have no real issue with losing a 12 yr molar –  I have blown two of those already. But, damn, this one is going to take a root canal.

Good thing it happened now. I have the next three weeks to get in to see the dentist and to get this fixed. From what I understand, root canals take 3 office appointments to finish. Good thing I am not going to work right now – I have the freedom in my schedule to be able to have dental work done.

Ya know what else? I have said time and again that we have been blessed. That things happen when we are in a position that allow us to deal with them both financially and emotionally. How lucky am I that my tooth broke now and not in two weeks?

Damn those silver linings.

**Note: I wrote this last night (Wednesday) – but I literally fell asleep on the laptop before I posted. Then, I spent today running here, there and everywhere. Most of the offices in which I waited did not have wifi – really kinda surprised me. Turns out I don’t need a root canal; the tooth can be filled and he found another small cavity that needs filling. Both will be taken care of in two short weeks. Woot.

** Friday morning… At MDAnderson already. Totally fell asleep on the laptop again last night. Keep wondering why nobody has commented on this posting… Then I come over here to check it out and keep finding that weare still in draft mode here. Sorry ’bout that. Will let’ch’all know what we find out when we do.

*** As an aside – MDA is monitoring the amount of time folk wait to see their doctors today. Apparently they are trying to minimize wait time. We’ll see, maybe we will be on the road back to the woods before lunch time.

Love you (and finding silver linings)

A Good Day,Good Day, Good Day, Good Day

Today is going to be a Good Day. Or at the very least, a better day.

It pretty much has to be. Yesterday was NOT a good day. Yesterday I was tired. I was scared, I was angry, I was hungry, I was miserable; and I wanted everybody to be miserable with me.

Today, I have had at least twice as much sleep as I had yesterday. (Still not nearly enough, but it helps…). Today, I have experienced the joy of caffeine prior to trying to interact with others. Today I have an idea of how my schedule might unfold. Today, I feel like I have some control.

This may all be an illusion – but I am okay with it.

Last night, after settling back in at home with the three Y-chromosomes, we all kinda fell apart. I got T and C down after a little family tv and minimal drama, then it was just the oldest & me. We settled into a little more viewing time and planned on an early bed-time. None of my plans came to fruition yesterday. Sent G up to get ready for bed at 9PM. Right after he closed the bathroom door behind himself – he broke down. Wracking sobs coming from upstairs disturbed the restful silence that I had expected. Called him back down to talk and attempted to meet his immediate emotional needs – only to be informed that I was totally reading him wrong. Apparently he had a sore throat in addition to lack of sleep, frustration and a very stressful day. Before I fully believed that he was coping with physical AND emotional issues, I got out the flashlight to give him a look-see. Yeah – his tonsils looked scary. Like T’s used to before they were taken out.

Gave G some cloraseptic spray and a lozenge. Recommended a shower and sleeping in our bed to help him settle in for the night. Then, I had no one to worry about but myself and I was way too done to do that. Tried to catch up on season 8 of Weeds, but last night was apparently another off night for BigCorp. We were missing internet and exfinity. It is a good thing Honey is no longer employed by them – now we can actually complain about things not working OR take our business somewhere else. If any of y’all  can help us figure out the most cost efficient way to have internet,  wifi, and tv – we would really appreciate your assistance. Our kids are accustomed to being able to watch Power Rangers and Dragonball Whatever-Kai; so we need access to such things. Honey is currently obsessed with MSNBC as well. Should we bundle? Is that too lemming of me? Help….

Anyway – my plans were to get up super early and get on up to St Luke’s to check in on Honey before church. Got child-sized face masks for G (and the other two) on our way north. G didn’t seem too concerned about having to wear the mask until the youngers wanted to as well. THEN it became a major ordeal b/c they were doing what he was doing and that near to took him over the edge before it was even 9AM.

But it is going to be a good day. We must remember this.

We saw the full spectrum of nurses, internists and neuro-guys in the hour and a half we were there. Information disseminated; Honey to be discharged after confirmation of MRI having been forwarded to MDA downtown. We love that there is an MDA consultant up here in the woods. It makes our lives just enough easier.

At 10:40, we left for church – G & C’s mom was to meet us there at 11:00 to pick them up.

Routine felt good. It was my Sunday to be a Greeter. It really helped a lot to have a comfort zone to snuggle down into. It also helped quite a bit that the toddler I have been sitting for spent the service sitting with me. Toddler cuddles rock. Out loud.

The Rev’s sermon was about Human Nature and Growing. Something I could relate to without making me cry about it this week. This is a Good Thing.

T and I left after church to go see if Honey was ready to be sent home. We parked all close to the exit and went on up to his room only to find he had already left. His nurse told us that he had gone home with a friend. Funny – I couldn’t think of any friends of his that weren’t with me at Northwoods that morning.

Under normal circumstances,  I would likely have had a hissy-fit about not knowing where he was (control issues) but today it was okay. Today I was okay is more to the point. Yeah, I’m alright. Drove on home and found Honey here waiting with a good friend and Thai food.

See, it has been a good day.

Love you (and routine – gotta have me some routine)

Return to Avalon

It seems like just a year ago that we were visiting L’hotel Ste Luke

Oh, hey, wait – it was.

Well – here we are again; hanging in the ER, waiting for a room.

Honey had two small seizures while driving to pick up the boys earlier

His ex called to let me know; he had forgotten his phone (again) and I was needed.

I was having a bit of a time trying to find a ride south to get him – but then providence smiled and CJ was walking by his (silenced) phone just as I was calling in. (phew)

We loaded ourselves into his car and were off.

Honey seemed pretty okay when we got to him (granted, he’d had nearly 45 minutes to wait for us) so we decided to go stop for Chinese food on the way home. Honey’s favorite Chinese restaurant is right there and I thought he probably had earned a treat. We were getting comfortable with our menus when Honey informed us that we would have to be getting our orders to go. He had been having a minor seizure that was transitioning to major status. I remember that the waitress was really pissy about that and that Honey was being awfully loud.

Fast forward 30 minutes – we are on our way home to drop off children who couldn’t have been happier that CJ was going to slumber party with them. Scoop some Chinese food into Glad-ware lidded bowls to bring to the ER with us and we were on our way.

We arrived at the ER at about 8:00ish. His seizure activity finally stopped at 8:35. He had a small reprieve and then he began to experience numbness in various places along his left side.

When we got behind the locked door into ER purgatory , Honey continued with the gregariousness thing he was working. I kept telling people  this was not normal behavior for him – but I didn’t say he “is having a personality flip” – instead I worded it as, “my introvert is behaving like an extrovert” – apparently I am sometimes the only one who understand myself. Honey explained his own neurological differences. Amazing.

All this time Honey has been having steroid induced ALF-like hiccups so badly that I considered finding him a cat. (google it)

While I’m thinking about cats, his Cat Scan guy was like Joey Lawrence at 25 cute. There were silver linings to be found – even in this gray fog.

When he was leaving for radiology, he told me that I should call all the sister-wives together. I got quite emotional. Then – right at that moment, one of the SWs called. She came to hang with us while we waited for a long-ass time (by the way) and brought warm socks and Dr Pepper.I felt so loved and cared for.

At about 1:00 AM, Honey was admitted to IMU (intermediate unit) which is located in the ICU area. I think he is even in the same room we were in last time.

The nurse up here made it quite clear that I would not be sleeping in the comfy bed in ICU – however there are love-seats in the waiting area for those who are brave of heart… Not me this time.

I will be going home, probably not sleeping, feeding the menagerie in the morning (kids and animals), and then coming directly back here before 8AM to get in to see Honey as soon as visitors are allowed.

I asked his nurse to write my phone number on the whiteboard and a note saying that I will be back first thing in the morning so that he knows what’s happening.

There doesn’t seem to be anything more that I can do beyond spell checking, posting and then heading home.

Love you (and warm socks)

Update on “Playing the Waiting Game”

Well, I guess we won’t have bigc to wait for anymore.

Honey had just gone to pick up the oldest

SHIT!!!! On A SANDWICH!!!!

He is not supposed to get the oldest on Tuesday until next week.

I screwed up – when he told me he was getting 10, I didn’t think – I just let him go.

His phone is still here – so I can’t call him.

Called the boys’ mom to see if she can get the school to call Me when he gets there.

I screwed up big time.

I was thinking about getting T off to his dad’s

and whether the toddler I’m watching will sleep til her dad gets here

or not

fuckety, fuckety, fuckety, fuck

I hate this…..

 

Anyway – back to the update

BigC just called on Honey’s phone (sparked realization of schedule snafu)

To let himknow that they were terminating his employment today

And that they are sending a letter to this effect tomorrow

But that they (h.r representative) was calling to pre-inform us.

She didn’t want us to be surprised.

His benefits will continue until the end of September

And the nwe will see what’s what.