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 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.)

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)

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)

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)

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)

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)

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

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)

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)

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)

here i sit waiting…..

waiting….

and

waiting.

i have also been processing

it took longer than usual this time

dont think im done yet

but needing to see the words.

ya know what i mean

we last went to mda a month ago yesterday

the mri indicated that blob was exerting control again

the bastard

you already know this cuz you saw the link to the surgeons trial so…

since this time last month

we have been in limbo

waiting.

waiting for news of fda approval

waiting to hear if honey is approved for phase 2

waiting for the chemo drugs to be completely out of his system

just waiting

three weeks ago now big corporation

henceforth bigc

told him that they were going to remove him from employee roster

because he cannot return to his old position any time soon

this is fair

and i dont blame the bearer of hard news

but that doesnt mean i dont want to smack her upside the head

damn

if honey loses his job

he loses employee insurance

except as a cobra recipient

we cant afford cobra

and it is not yet 2014

so insurance companies arent obligated to cover preexisting conditions

we had a week to figure out what we were going to do

we still had at least 2 weeks of waiting

left on the fda approval

then waiting for honeys ok

but hr at bigc were only willing to wait 1 week.

we have temporarily put this problem on hold

as hr is looking at finding a job he can do from home

which is fine

except bigc provides our cable and wifi

which goes out every day between 12 and 3 or 4

silly silly silly

and waiting some more

so it has been about 10 weeks

since honey has gotten chemo

he still takes anti seizure meds and antibiotics

he has been losing weight

a lot

he tires so easily.

he has been angry

i dont know if its life and work scares

or if blob has begun to affect him that way

he still composes.

he has been blasting out poems like crazy

he has been going to writers group

and trivia night.

he goes to the movies at least once a week

and he tries to hide

his pain from me

he has been having headaches lately

the pressure behind his eyes is severe

he has had various frozen fruit and berries

as icepacks on his forehead

have spoken to sn about this.

earlier today

she will talking w the nurse practioner

and get back to me

cuz drc is out of town

til the 14th

looks like the gas man is here

please pardon typoes

this was written on my phone

love you but not waiting

me

Sounds kinda dramatic, huh?

I might be pissed because:

Our Internet has been spotty at best for the past two weeks. This week, I haven’t been able to get on at all. Every freaking time I look at the stupid little box with the 5 stupid little green lights they are instead one orange light and some blinking green ones. Comcast was supposed to come by yesterday – but apparently they found something better to do. Bastards. We are rescheduled for tomorrow. We will see.

In order to write at all, I have had to come to Starbuck’s (which is not bad in itself) but I have one of those “I-am-going-to-argue-my-Christianity-loudly-on-the-phone-while-you-are-trying-to-work-people” and Oh My Goodness do they irritate the fuck out of me.

Shit. Shit. Shit Shit

Phone guy just started in on another on of his “hear me outs.” I didn’t. I didn’t hear him out. I picked up my stuff and came inside – however, prior to coming inside I did tell him that a Christian doesn’t spend 25 minutes trying to convince someone that he is right when he had made a mistake. He simply says, “I’m sorry,” and gets on with it. NFF. So NFF.

I might be totally fucked up because:

I completely got off track after I took Honey’s meds by mistake the other day. That night I fell asleep without taking mine – skipped the next morning because…. ummmm…. no reason – maybe my subconscious mind was playing with my body. That’s as good an excuse as any. Then I took T to the pool during prime sun hours (say it. I know you want to. I also know I deserve it.) So, super sunburned, fell asleep on the chair again did not take night-time meds. (You have NO idea the testament this is to my family. I might’a kicked me out by now.)  This morning, when I saw the backlog of pills in my little-old-lady week-at-a-glance pill dispensers, I decided to try to rectify the situation. I took Weds night’s dose this morning, Thurs morning’s at lunch time and was planning on trying to squeeze another session of meds in sometimes later during the day to really catch up, when I realized that I was getting so manicky that I wasn’t able to make good decisions. I chose to wait til actual bed time to take the next dose of night drugs. (see how that works - made a good decision there!)

I want you to know that I took all those meds not just b/c I am stupid, but because every nerve/muscle/sinew in my being hurt. I had missed more than 24 hours worth of my Lyrica (science’s gift to fibromyalgia) Nortriptyline which gets me to REM sleep when taken at night, and thus allows my body to heal itself - but when taken improperly makes me manic. Oops. On top of that I have doubled up on my Prozac. So, I have a pretty powerful sedative fighting it out with a heavy weight upper. Bad day.

I may be scared ‘cuz:

I have no idea what will happen with Honey’s care. All I know is that we should hear something soon enough. Honey has said I may start calling SN and hounding her after four weeks from his last appointment. I am so scared that we are going to have a replay of last Sept/Oct. And ya’know, that’s not a place I especially want to go

I don’t like to not know what is coming up next. I remember pissing my mom off because I would keep asking, “then what?” or, “how long?”. I have always been that child. My ability to arrive someplace on time is questionable, but you can be reasonably certain I will be there. Maybe I am a little bit of a control person. Maybe. Maybe I need to learn how to let go and not worry. I have a number of books that would be more than happy to teach me their particular method of finding solace. I just don’t know if I am there yet.

Love you (and my own nuttyness)

Friday last, our family of five went on a trek to MDAnderson the Cancer Center for  Honey’s MRI reading with his neuro-oncologist. That might not sound all that much fun to some of you, but let me assure you that the ride was darned near to perfect considering that we are currently doing all of our travelling in a Toyota Echo with no air con and no radio. I think I had this car on Guam once already – only it was disguised as a Mitsubishi Mirage then.

My plan was that Honey get the boys checked in at the information desk and then wait for me to arrive; at which point, we would take the children to childcare at MDAnderson while we (the grown ups) went to the actual doctor’s appointment for Honey’s status update and to discuss any change in symptoms or treatment plan.

When I got to the main lobby, the receptionist remembered my family - now I’m thinking that this may just sound promising so I threw out the old, “Do you know if he took them to childcare?” Well, that volunteer was just so sweet when she told me that the brain and spine center was one of the few places above ground level that will allow children that I decided not to dope smack her right then and there. She didn’t know that I did not want the boys there – and Honey can’t quite wrap his mind around why I feel this way.

So, off I went to the Brain and Spine center. Elevator B, Floor 7 and I was dumped right there. No walking, very little waiting.

Now, here I feel a little more in my element. We have a relationship with the folk who work here. They remember us and they make us feel like they really do care. And that is super important. They laugh at our gallows humor – Honey has been seeing them for 37 MRIs now. He’s been with them for longer than he has been with me (not jealous – just sayin).

So, when they said something along the lines of, “Oh – here’s Ms.SG.” I was fairly confident that she had seen my family wandering about somewhere.

I asked if Honey and the boys had come by that-a-way. When she replied in the affirmative, I was feeling pretty good about myself and my problem solving skills. (woot. way to go jenn, go jenn) I turned around to join them in the waiting area, but again could not find my family (and it really is hard to misplace those red-headed step-children of mine). So, I asked again where they might be only to again get the same response that they may have gone “over there”.

(wanna let you know right here that I had been out of prozac for almost a week at this point – there was definitely the potential for fur to fly)

Finally, SuperNurse came to the waiting area from the behind the locked doors section of private cubicles for patient waiting and brought me in to join the Y-chromosones.

Thankfully I had the forethought to bring electronic distractions or else I may have had to resort to muzzling and hog-tying them with duct-tape.

First thing, we always see SN for weigh in and basic pre-meeting questions related to expected ways that Blob can present if he grows (I guess).

Then we see the fellow of the semester. Always a treat to see a new face.

The fellows also ask pre-oncologist questions. She had him walk heel-toe, remember three words, touch his fingers to his nose and  wiggle his hands. He wasn’t very good at the whole hand wiggling thing – but it could be (WAY) worse. I kinda hate to admit that this fellow annoyed the crap out of me (I seriously try to maintain good relationship with MD Anderson staff – they literally hold Honey’s fate in their hands…) This one though, was not paying attention to me when I was trying to (sublty) tell her that  Honey either doesn’t remember or simply downplays all physical manifestations of his cancer. If he says he’s kinda getting some headaches, not many, you know - that means every time he exerts himself, every time he leans forward, every time the sunlight is too bright; every time the kids are rambunctious (read: being kids) he gets a headache. Honey tries so hard not to complain, but until the headaches get really bad – he can only take Tylenol (all other OTCs are blood thinners. His platelet count is already low – sucks to be him). So this brandy-spankin-new fellow comes in and suggests that he not take Tylenol if he can possibly do fucking without it. “Excuse me, Bitch? He has a fucking tumor in his brain – try not to take Tylenol b/c he can become addicted? Are you shitting me? … then give him a prescription and grow some common sense, because I think becoming addicted to Tylenol is probably one of the least significant things we need to focus on at this point of our journey.”

But, because I had children in the room, I just thought all these things. Really EMPHATICALLY and really LOUDLY inside my own head.

The fellow did show me and the kids Honey’s current MRI as compared to the last one. This actually placated me some as  I hadn’t gotten to see his films the last time we were there. This made me unpleased however b/c there was change in blob and I really, really did not want to have the boys there to begin with; certainly didn’t want them to be there for less than positive news, but there is nothing to be done for that now.

When the Amazing DrC came in, he explained a bit more about what he and the radiologist are seeing in the MRI. Something, something dense; something, something more defined; something, something different…

Great.

So, we are then informed that Honey can’t get anymore carboplatin as he has maxed out on that. DrC is going to have SN try to make an appointment with the same surgeon Honey saw last summer. You know, the one who wouldn’t operate on Honey because it would only delay Blob, but not actually kill it.

Well, NOW it would appear that the gene-therapy treatment that was mentioned to us in passing way back in May 2011 may be approved by the FDA for human trials within the next 3 or so weeks. What they will be doing is injecting live virus into the lesion. (In lab mice) The virus consumes any cancerous cells, but stops at the healthy ones. Thus actually curing the GBM in the brains of the mice.

This is the only treatment that has ever eradicated GBM in lab tests. This is awesome.

Honey needs to be totally chemo free to even begin to qualify for the study. That means no more chemo for at least the next 6 weeks. This is not awesome.

If he is not eligible for the study, DrC will determine a new routine of chemo drugs to see what comes next. This is neither good, nor bad. It simply is.

***Is anyone else thinking Pinky and The Brain (nog) or Flowers For Algernon here? (Seriously, don’t ask me, just google them if you don’t know….)***

Love you (and my previously oh so blissful ignorance)

spending the night.

nothing open for food or bev in my terminal.

vending machines but im 50 cents short

have to catch train to main baggage claim to get anything

get 12 oz mr pib for 2 dollars 25 cents

cant take it back through security

fother mucker

sit outside of security to drink bev before hoping the train

enter young tsa employee who thinks his iron on badge makes him tough

tells me i cant sit there

i ask why

he repeats  his message

i say i am just finishing my drink before i pass through xray again

he repeats his message with an insolent and scolding tone

i try to get up

not fast enough for him

i slip and fall on my ass as im standing up

he is still being a snot

i am getting  emotional

i was supposed to be in houston hours ago

my t came home from his dads today

honey has all 3 boys and am becoming unravelled

i dump my drink in the trash

get to xray

put carryons on conveyor belt

walk through the scan and set off the fucking alarm

why cant things be easy

at this point i have started to hyperventilate

i had rolled with it all day.

no fussing no complaining

i understand that things happen and being nasty wont help me any

i understand that i am spending the night in atlanta

again

2x i have ever had to sleep at airports.

both were here

nice

finally get through security

ask for the name or badge number of rudeboy so i can write a letter

he tells me to go tell his supervisor right now

i start to walk over and

he races me like a 6 year old who wants mom

to listen to why it was his siblings fault before his crying sib gets there

starts in on he didnt do anything yada yada yada

i am not saying his directions were out of line

i am however saying that his rudeness  was totally uncalled for

i was the only passenger there

i was doing nothing that warrented such treatment

then to top it all off

i left my id and bording pass back there

so i couldnt even leave graciously

** note: I do realize that his stupid iron-on transfer TSA patch does make him kind of a big deal there – but it did not change the fact that he was a mean little shit.

Okay, so here it is – July is my regular time to travel and play. Normally I would have just gotten out of work for the summer, T is with his dad and why not? I lived my wanderlust for 15 years. Now, I visit with it in the summertime. For the past two years, Honey has joined me on the annual OCF pilgrimage. As an aside, that, my friends, is love. He would have been considerably more comfortable at home than camping at Zumwalt. (this is one of the ways he shields me from the realities of Blob – he does way more than he should…)

When  we were coming back to TX from the mighty, mighty Pacific North-West, we were supposed to fly out at the ungodly hour of 5:50am. (Sometimes there’s a reason something’s on sale, apparently). So Honey insisted we get up at 3:30 – just to make sure we are there with at least an hour and 15 to spare (if we are not at least that early, we are technically late according to Honey’s body clock).

Well, I screwed up.

Surprised?

I had us dropped of at United rather than USAir. I tried to check us in at the airline computer and failed miserably. Couldn’t get the machine to do a thing I wanted it to and ended up having to wait in the line from hell to get to a ticket agent. Finally got there, and he couldn’t find our flight information either.

As you can imagine, I’m sure, my anxiety level was kinda getting up there. I was not necessarily at my most calm right then…

Then the heaven’s opened, God smiled and we were found within the inter-world of airlines scheduled with a different airline.  When we arrived at USAir, the agent standing at the end of the queue asked if we were going to Houston. I thought she was very clever and said, “Why yes we are, thank you” and stepped into the line she indicated after she confirmed that we had plenty of time.

Alright, so here we are, in line at the ticket area. Long line. Our lovely cushion of time that Honey built into our airport experience is running out. He is getting agitated – which really doesn’t help me in this situation at all.

Finally, we get to the head of the line and there is an agent who has just come in and is opening his register (do people do that anymore?) and logging on right in time for us to end up at his spot. (yay) I handed him my ID and debit card and was informed that when I was asked about Houston being our destination earlier, it was for a direct flight that was running late – not the three puddle jumpers that’d take 13 hours to get us home on which I have us scheduled. Oh – and they couldn’t find the reservations for the last leg of our trip from Austin to Houston on their system – and while that’s only a three hour drive, we couldn’t drive it cuz the car was at the Houston airport!

Now it is 5:37 and we have not even gotten remotely close to security – all was not well in my world. I was having a major travel crisis moment. I got kinda verklempt and was all out of sorts and was feeling like I had been drug through mud and not wrung out all that well, and, and, and, and…. (can you see where this is heading?)

So, the very nice ticket guy kindly leaned over and did the “there, there” thing, patted my hand and he told me that everything would be ok, and they would get us home, i just needed to relax and calm down…. I’m telling you, when he suggested I calm down, I readily agreed, saying, “You are so right. Oh wait, I have valium in my purse – just hold on for a second, I’ll get it. This is gonna be okay….”

We were booked on that direct flight really very quickly after that. And I didn’t even need to pull out the cancer card…. Go figure…

Just spent 4 days and 3 nights “camping” at Zumwalt while we attended Oregon Country Fair.

Forgot my phone at home (again). Am using Honey’s for emergencies like locating friends in the fair…

Honey seems to be holding up okay. He stayed at the camp grounds on Fri and Sat – but joined us on Sunday. We used him to get alter-abled access parking and shortly after we parked, he was taken to the front of the fair by a bike-taxi.

This is all good.

We got Honey a wheel chair because his femurs have been hurting (he expects this is a result of the carboplatin) and we were ready to rock-n-roll. Silly me. One does not “rock-n-roll” while pushing a wheel chair over unevenly compressed dirt paths.

So, we were there just long enough and went just deep enough into the fair for Honey to see The Dress he wanted to get me. I did the try on thing, it looked great, we purchased it, put Honey back into the wheel chair and headed for the exit.

Honey was concerned. This morning he asked if I had had a good fair. I had to tell him that they are all good, and they all have a different dynamic. Would I have preferred it if he came to the fair with me every day? Yes. Would I have preferred to go with my husband to the fire pit and dance to the drums over staying and hanging out at our camp? Sure. Would I choose to do either of those things on my own rather than spend time with him? Not a chance.

We are all okay. Existing under the radar for a few days.

Here is the latest update on Blob: Honey had chemo (both avastin and carboplatin) the day before we flew out to Portland. Luckily they also gave him a drip of something that controlled his nausea for about 5 days. Unfortunately, it has worn off. This does not bode well for our flight home, but I am pretty sure we will survive. We may even live to laugh about it.

It is with a heavy heart that I write that Cole passed away last week.  His little body just couldn’t take any more.  My heart goes out to his family and friends.

Original Post:

See update below!

A blogger I follow recently posted about her nephew who is a living miracle.  His doctors did not think he’d make it to Christmas.  Well, he’s having his 5th birthday today, so let’s all let this little fellow know how much he means by sending some birthday cards!  I found a cute little e-card on 123greetings.com and sent it a few minutes ago.

Click here to see Jen’s post about her nephew.

Thanks, peeps.  I have a feeling he and his family will appreciate the wishes more than we’ll ever know.

~ Jen

*UPDATE*

Jen posted a blog entry about the outpouring of love sent to Cole on his birthday.  I’d like to thank anyone who read my blog and  helped little Cole feel better and have a great birthday!

Thank you!

And whether the criticism is correct, deserved, or even logical is entirely irrelevant–just say “Yes ma’am” and walk away. It is usually best to do something productive and potentially redeeming at this point.