My Honey is Gone

Last night (1/22/2013 @ 11:31pm) my Honey left to pave the way for the rest of our journey. He told me he would wait for me.

He went quickly – only three hours of hell, for me; the Hospice nurse assured me that he wasn’t feeling pain. I’m sure she is right, he was pretty loaded up on morphine.

He didn’t seem afraid at all. I knew he wouldn’t be. We have talked often of the soul that this body houses. About what it means (to each of us) to BE and to be BECOMING. He has been, he is now, he is becoming always.*°

At the very end, I crammed into the bed with him and held him. A position we have shared on many of our hospital getaways, so I was really quite comfortable. Really. So comfortable that I fell asleep holding him.

Apparently this was what he had been waiting for, because he began his slumber at the same time that I did.

I remember looking at the clock at one point and thinking SK should be driving here with my mom by now. Then I rested my head on Honey’s chest and dozed off.

I woke 20 minutes later to the sound of the Hospice nurse calling in Honey’s passing. Everything else was so quiet, almost preternaturally quiet. It took just a second for me to realize that I was no longer hearing the tortured sounds of my Honey trying to breathe. He was quiet. He was peaceful.

I need to thank Cyndi and Mary for being by my side and for singing “Spirit of Life” as the end came nearer.

My Honey waited until after his family had left to return to their respective homes before he let himself rest. He worked so hard at making his death easier for everyone else… I worked so hard to make his dying easier for him. I promised I would take care of him. I did my best. It wasn’t easy, but I did my best.

I miss him so much already. I keep turning to comment on something or other and he isn’t there to laugh with me.
Sad, sad, sad.

* use of gender specific pronoun for convenience and consistency
° used as a means to pacify the UUs out there on the fringes who are correcting my lack of gender neutrality as they read

The Long and Winding Road (part 1)

It has been almost two weeks since I have last logged in. There’s a reason for that. It has been quite a long couple of weeks.

The last time I checked in with you, we were waiting to get the results of Honey’s most recent MRI from DrC at MDA. Now? We are in the St.Luke’s ER waiting to be transferred over to ICU (again). I am guessing that you probably have figured out that the reading from his MRI wasn’t good. If it had been, you certainly would have been informed prior to now(and we likely wouldn’t be back in the ER so soon).

Honey’s November 22 MRI looked really good. There was just the littlest bit of lesion showing along the motor cortex. Not a big deal all things considered. His December 6 MRI however, told a very different story. It appeared as if Blob had poofed a mushroom cloud all around the cavity left from surgery. It also had started to migrate from the right hemisphere to the left. Honey had been using a walker when he was initially dismissed from MDA. By Weds, Dec 5th, he was in a wheelchair full-time. Blob started out such an underachiever – I never expected him to be able to change so much so quickly…

DrC told us (after I asked) that Honey probably has about three months left with us. He suggested that I get into contact with Hospice and told Honey that if he were his brother, he would tell him to go home and get comfortable.

Well.

No matter how much you prepare, it is still a shock to hear such news.

So, we cried. A lot. We talked. We cried again. We called folk who needed to hear what was going on from us personally. We cried some more and we made arrangements for loved ones to come visit us now, while Honey could enjoy the company – rather than later… Hey, guess what? We cried even more after that. We also got some good laughing in there – but I think that is mostly because we share a morbid gallows sense of humor.

Our good friend from Portland (J) was here last week. I spoke to her the Wednesday before Honey’s appt and asked if she could come out – she arrived Sunday morning – just four days after I asked and not quite two full days after we received the word about Blob. She brought Hanukkah with her; dreidels, latkes, a menorah and candles. And Love – she brought an abundance of love.

For a while there, I thought she brought the miracle of Hanukkah 2012 with her as well. Honey’s physical condition kept improving; he seemed to get stronger (and more cocksure) by the hour. On Saturday night, when J left, Honey was able to get up from the couch with little or no help, he was confident with his walker and was even trying to get around without it if I wasn’t paying strict attention. Actually, we let him think he was sneaking these walker free transitions – I couldn’t bear to take them away from him. He needed to feel in control of something and there is so little else that he can take charge of…

Today, this afternoon and evening, he had a surprisingly quick change of status.  Within no time at all, he lost his ability to control his left side. His face drooped, he couldn’t grip his walker (or my hand), he would fall over to the side when sitting up, it was pretty scary. We thought we would wait til the morning to see how he was doing, but that didn’t happen either. At about midnight he started getting nauseous and that was that for me – I called 911 and relinquished my (lack of) control over the situation.

So, here we are. St. Luke’s The Woodlands; ICU room 260. Visiting hours are from 8AM – 6PM and then again from 8PM-10PM. There is some talk of transferring him to MDA downtown – but there are no beds available for him at this time. All things considered, it is easier to have him here because we are close to home, but MDA has a much better food service.

It almost works out to six of one/half a dozen of the other. Almost.

Love you (just that – I love you, please be aware.)

Oh, The Stories I Could Tell…

If either of us were currently working outside of the home, Honey’s surgery would have been scheduled for a most convenient time. He got released from the hospital right at the beginning of Thanksgiving break – so theoretically everything should have been pretty easy going.

Theoretically.

I hate theoretically – cuz it is almost never in line with actually.

Let me tell ya about what Thanksgiving vacation looked like in our house this year.

I’m gonna tell you now that I will likely win any and all comical bad vacation stories with this one. (For those of you who have heard them – this even beats the “mooooove”  to TX when I was 22 and The Waffle House story – both!)

So – Friday, November 16th, Honey gets sprung from MDA, the kids get sprung from school – I get sprung from any kind of sanity I have ever held.  This was my schedule of events for the first official day of Thanksgiving break.

1. awake at 3:30AM when Honey decided he was ready for breakfast
2. go to cafe 24/7 to find something he can eat in the middle of the damn night
3. wake again at 6:30 when it was actually time to call for breakfast
4. eat breakfast (cream of wheat, blueberry greek yogurt, fresh berries and a Dr Pepper)
5. leave MDA at 7:30am – return to The Woods for a second grade Poetry Feast for The Boy Child
6. drop dog at groomer so that Honey is not offended by his dog-like stench when he gets home
7. attend Poetry Feast, dismiss boy child from school early b/c that’s why they have things like Poetry Feasts on the day before vacation; so you can get your kid out of there by lunch time and the teacher can get cut some slack for once
8. return to MDA to bring Honey home
9. wait
10. wait
11. wait
12. leave MDA just as evening rush hour is beginning – spend nearly three hours trying to get home
13. arrive home with just enough time to get back in the car and go to pick up 10 and 6 from their mom’s house (thank you, MY mom for doing that for me – you can’t begin to imagine how much that hour off helped)
14. realize that I have done all I can — yet rest assured that I have forgotten to do more than I remembered
15. See – knew I forgot something – pick up all Honey’s new prescriptions and try to deal with pharmacological misfortunes.
16. Shit – the dog! Forgot the dog. Good thing the groomer likes him (I think she just tolerates me at this point…)
17. try to sleep, fail, try again, fail, repeat ad infinitum
18. wake at 3:30AM when Honey decided that he was hungry…..

So really, it wasn’t a BAD day at all – just an extremely long and busy one. Vacay really started getting exciting after that.

Just wait….

Imagine for a moment – a smallish townhome with an open kitchen/dining/living area filled with big man-sized furniture, three children (6,7 and 10), two moms (one just a mom, the other a nana), one rather large man who is learning how to do many of the things that he used to could do with no thought at all (ie: shoe tying, walking, dressing, typing, etc –> all very frustrating tasks), his walker, three cats and a very needy schnauzer.

No, really, imagine this for  a moment or two – then promise yourself you will never try to think of such a thing again.

I really don’t think I can even begin to do this tale the justice it deserves -but I will try. Understand that I have to downplay some of these events because if I emotionally revisit, I may have to take a valium (or seven).

As best I recall, it went something like this:

The first weekend was rather quiet. Honey spent a lot of time sleeping, Nana was there any time I needed to escape run an errand. The kids were playing online games together with the two computers, Kitty brought us a collection of dead moles to show his gratitude for our return home. Really it seemed like we were going to be okay.

By Monday, I started to have my doubts.

All I could see was the wall in front of me that I needed to climb over to even begin to see my first hurdle in moving forward. I knew I needed to make the house handicapped accessible for Honey – I just hadn’t the foggiest idea of how to get started. I knew I had to keep on top of his medicines – but the lists were way overwhelming. I also had to learn how to monitor his glucose levels as he had developed steroid induced diabetes while in the hospital. I had finally almost figured out how to do the brain cancer thing, and now they were throwing diabetes at me. Not okay. So. Not. Okay. At. All.

I also knew that I had to take care of business outside of the home. My letter of insurance coverage had just arrived so I could get myself basic insurance through my work – and then we received a denial of coverage for 6 and 10 through state insurance (CHIPS) because we make too much money. Right – on our mutual disabilities and regular + medical expenses we have too much money for our children to qualify for medicare services.

The only way to rectify this problem that I could see was for me to add Honey’s children to MY insurance. Have I told you how much Honey’s COBRA is costing us? And that I was giving serious consideration to not insuring myself so that we could have an emergency fund if we needed it? Ya, that isn’t going to happen. We are now paying an additional $540/mo to keep insurance on Honey’s kids. That is actually $371 more than it would cost to just insure myself. No stress here. No anxiety, none at all. Hey, did I mention that one of Honey’s required meds costs $299/mo? And that’s just one of them… How cool is that?

Top priority (after insurance) was making the home accessible to Honey and his walker. To that end, we had to get a new front door and have it open from the other direction (left-handed instead of right-handed), build a ramp to the front door and have additional banisters added to the stairs. We had friends offer to help with these things – but that didn’t work out quite the way I had hoped. Our sense of urgency for these items simply was not at the same level as that of folk who don’t have to live with us me. I will admit to a rather slight bit of neurosis in my attention to Honey’s needs – but I am thinking that a ramp could have been built within the first week that he was home…. Really.

So – because I so hate to have conflict with friends – or people I am in relationship with, the housing adaptions were causing me a lot of grief. I needed Honey taken care of and I couldn’t get into a conflict with the friend who wasn’t helping us the way I  felt we needed. It was ugly. It made me cry. It brought my relationship with Prozac to a whole new level.

Understand, I am the administrative assistant in our home. I call the insurance companies, I call the doctors’ offices, I deal with pharmacies and their divas, I am the chauffeur, I am the mom, the wife and the caregiver. I can do all these things with strength and (usually) kind manners. I cannot do the same with people whom I know. This is my great personal failure. I am working to overcome this issue, but I have been less than successful thus far.

In an effort of avoidance, I got in touch with a contractor whom had been highly “recommeneded” by the customer service people at Home Depot. They came by, looked at the house, went to price bannisters and come back with a proposal of $450 for the ramp and stairs and said they could get ‘er done on Thursday. Our 2nd opinion came in with a quote of $465 to build the ramp, put in two bannisters (rather than the just one that I thought we needed) AND removed the carpeting from the stairs so that I can sand and finish them (so they will be less of a slip & fall hazard). AND, AND, AND they could do the work right away. It was more than worth the money to get the job done expediently and without conflict.

In the meantime, we were still adapting to some major changes in our world. The least affected of our (human) boys seemed to be 6. He just rolled with it – as long as he could use the computer or was otherwise entertained, he was cool. In fact, this week just past may have been the best vacation we have ever had with him. He has grown up so much in the last year it is simply amazing.

I think that 7 rolled with things pretty well. This has been his everyday for the past coupla’ years. He is also a really empathetic and just seems to accept the reality of his world without any great stress (so far, I think). The hardest thing for him during the week was adapting to not being the only kid in the house and having to give up his room for Nana. When there is only one child in the house, there tends to be less interpersonal conflict. T(7) needs to learn how to work out issues with his brothers – more to the point, he has to learn how to be a brother. Not easy. The hardest thing for him was when he asked his dad if he could spend the night Thanksgiving Thursday since he would be weekending with him anyway – his dad said no ‘cuz his girlfriend was in town. Seriously? What kind of a dad does that?

10, on the other hand, was having some significant problems dealing with the day to day. He is the closest to his dad. He and Honey have always had an extremely deep bond and they are both so introverted that they are unable to express their feelings verbally (or in any way that I understand and am able to help foster). The acting out of emotions that were apparent to me included such behaviors as lying, whining, ignoring directives, demonstrating lots of exasperation and acting out physically with the youngers. These were the minor problems that I had rather expected from all of the children. No big deal, I am a behavior specialist after all. This is what I do.

The more significant problems seemed to revolve around the bathroom. At one point both of the littlers (6 & 7) came downstairs saying they could not use the upstairs restroom because it was too disgusting. Now, I tend to try to avoid that bathroom b/c I think boy bathrooms are nasty to begin with – but this required at least a look-see in case I actually had to tend to anything (flooded commode, maybe?).  That would have been easy. Grab a plunger, go to work on the potty, flush and be done. No, this was not as simple or pleasant as a blocked toilet –> this was shit wiped on the shower curtain right next to the toilet at just about the height that a 10 yr old hand would be were the child sitting down.

Mind you, this discovery was made right in the middle of dinner. I toughed it out, took down the curtain and put it into the wash. Done but for the residual ick and ruined appetite. No accusations were made – all of the family (Nana included) were informed of proper toileting behaviors and it was let go. Until the next time something shitty happened. The next afternoon, 10 ran into the downstairs bath to do whatever it was he had to do. He got sent back to wash his hands and that was that (I thought). The next lucky person to go to that room was me. Probably a good thing. There was poop on the toilet seat, 10 was called back in and shown how to clean up such an unfortunate incident himself rather than leaving it as a gift for someone else. We got out the bleach-water (I know this is environmentally incorrect, but this was shit on the place where I was gonna put MY bum), a rag and some rubber gloves. (Initially 10 thought it would be acceptable to simply run the bowl brush along the seat – thus smearing it around rather than actually cleaning). Lesson was given, seat was cleaned, rag thrown into clothes washer so nobody else would have to touch it.

Done, right? You would think so, but you would be wrong. When I went back in to do what I had to do, I found soiled toilet paper lying on the floor next to the toilet. How does one miss dropping paper into the bowl by such a vast distance? How does one not notice that they have missed the bowl? What is going through the mind of the person who does such a thing? 10 got called back once again to clean up after himself and was informed in no uncertain terms that if something comes out of his butt, he is responsible for taking care of it immediately.

At this point, I was aware that something was clearly very wrong here. And that I was completely unequiped to deal with something of this magnitude. I called the counselor that the family had been seeing and asked for an emergency visit for Honey and 10 to attend together – without the rest of us. Hopefully, they will be able to communicae with one another and maybe 10 will stop punishing us in such a vile manner.

Oh, he (10) also smooshed silly putty into 7’s flannel bedsheets and blanket. I am never purchasing  silly putty again – there was nothing silly about this at all. And the true coup de gras was when he hurt a 5 year old at Thanksgiving dinner. Apparently, the 5 yr old started it by poking 10 in the stomach. 10 felt that twisting his arm would be the best way to handle such behavior. To be factual, it did stop 5 from bothering him – but it didn’t stop 5 from coming and telling me that my big boy hurt him. Nice.

One top of all this, Honey is still trying to learn how to compensate for the consequences of his surgery. He did a very good job of keeping his temper about him all week – thank goodness – or I might really have lost it.

So, THAT was our Thanksgiving break. Bet yours seems much better in comparison.

Don’t get me wrong – I am extremely thankful – I am also extremely tired and nearing the knot at the end of my rope.

There are more stories. They will come in time. I still have “the parking lot confrontation” and the “key incident” to tell you about.

Love you (and the day school vacations end)

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)

 

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)

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)

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

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

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)