Mmmmmmmm (so not) Okaaaaayyyy

I don’t know whether I am pissed, seriously fucked up or scared right about now. Probably a good chunk of all three.

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)

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Enemy Of My Enemy

I was looking at some ABTA information….

Y’all have been asking about this virus thing and Honey’s getting referred back to the neuro-surgeon and all sorts of things that I didin’t really address all that well in the August six-week check in.

To that end, I have found a very recent news-clip that pretty much explains what is happening here right about now. (give this a coupla’ moments to synch-up before viewing)

We are waiting to see if the FDA will approve Phase Two and if Honey is a good candidate for it.

From what DrC has told us, DrL’s “treatment” is the only thing that has shown to be curative of GBM in mice. Every treatment available prior to this was palliative only.

So, fingers crossed for all to happen in good time and in good health.

Love you (and MD Anderson Cancer Center)

*oh, hey, I tried to link this video two different ways – pretty sure at least one will work.

My Top Ten Tear Jerkers: I Always Cry When…

My Top Ten Tear Jerkers: I Always Cry When….

My most wonderful, awesome Canadian friend (yes, that makes her almost as fantastic as New Englander just from farther away) posted this in her blog.

She is so marvelous that I just KNOW that she won’t be upset with me for having usurped it. (If I have to say I’m sorry, it will be very heartfelt –> but I don’t think this will be too much of a problem)

I want to add that I don’t agree with her on the Enterprise crash as a top ten tear jerker. I would give that position to The Outsiders every moment from Ponyboy cutting and coloring his “tuff, tuff hair” to Dally’s police assisted suicide…  I can’t even think, “let’s do it for Johnny.” without breaking down.

See, now I’m crying. Damn it. It’s not all that easy to stop once I start – but this is the glory of sad movies. We get to cry, laugh, get all riled up, whatever and it is okay.

Sometimes, when the need to emote gets too big for me to handle, Lifetime movie marathons are a blessing. When I cry during a movie – people don’t feel that awkward need to make things better. They know they will be better soon – maybe just a couple of scenes or so….

I feel like when I cry in real life – it doesn’t do much other than make the people with me to want to be elsewhere.

So, thank you sappy movies for being the perfect vessel to provide the opportunity to cry without embarrassment.

Love you (and Ponyboy – totally Ponyboy. Well, maybe a little TwoBit as well)

 

 

 

 

August 6-Week Checkup

Alternate title: Change Can Be Scary

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)

The more things change…

…the more they stay the same.

We (the five of us) are sitting in the neuro-oncologist’s office waiting to see the fabulous DrC. I have brought enough electronics to entertain each of the children (two cells, a nook and my laptop). We have a game of Uno, a game of Backgammon and a lesson in learning Mommy’s phone number (the source of today’s whine-fest)

I am blogging this from here b/c I am fairly sure that I won’t feel like telling it after later and b/c we usually have a long wait for the doctor and writing helps to distract me from the kid noise. Later  today I will be posting the regular 6-week Honey-status update. Be on the lookout.

So, let me tell you about my reunion-vacation….

First, I managed to get to Boston with no real problem. Two carry-ons, no waiting. Niceness.

Took the bus from Logan to Plymouth – my sister, F and her three sons picked me up and vacation was on.

They had turned the master bedroom into a retreat with flowers, candles and little “welcome” and “We love you” signs. Awesomeness.

Of course, there was the moment of guilt when I realized that my sister and her husband were planning on sleeping on the air mattress in the guest room so that I could have a retreat, but I got over that pretty quickly. Thank goodness.

On Thursday night, we gathered the whole fam-damily at Friendly’s for deserts. There is not much that’s better than a Friendly’s Perfect Ending hot fudge sundae with massive amounts of extra hot fudge. (Unless it is an Awful Awful from Newport Creamery.) So, there we were, five adults and seven children catching up on the past three years, oohing and awing over new nieces and how much the other kids have grown. Undoubtedly the waitresses worse dream – a large group for ice-cream only usually means they will be labor intensive but not leave a very good tip b/c the bill is less pricey than dinner, you know….

Anyway – it was a lovely family reunion. Everybody looked good, everybody seems happy, nobody cried. Success all around.

Friday (and every day after that) I woke up, puttered around and then headed off to the cape. Silly me, I totally forgot what happens when you try to cross the Sagamore Bridge on a Friday in the summer. It was not pretty. At all. At all…

When I finally got over the bridge and was actually ON CAPE, I had the opportunity to visit with friends I haven’t seen in decades – It felt great – kinda’ like sliding into a favorite pair of Levi’s. In fact, one of the people from my youth whom I hold dearest to my heart ever so kindly introduced my to Sailor Jerry. I haven’t had a rum drink since I was in Barbados 23 years ago.This was much better than I remembered. Thank you my friend – I love you.

Drove by the house my parents built – the one I grew up in…. The current owner must have gotten it business zoned – he has a salon in the basement. He did invite me in to look around, and then kindly offered me up a place to stay if I needed it while I was visiting. (awkward)

On my way back to my sister’s house I got a little flaky – I’m sure it had nothing at all to do with the glorious rum/coke I had just finished – but I couldn’t decide where I wanted to go. Did I want to go to the duck pond? the boardwalk? just home? what? So, I did what anyone else would have done in my situation. I did a lot of turning around in parking lots while I was deciding…. At one point I saw blue lights in my rear-view and I thought it would be quite prudent to get out of the way – the siren wasn’t on, but you know how it is…. So I pulled into the (do not) enter parking lot at the police station, turned around and then pulled into the liquor store across the street to make a decision and to set my GPS.

I don’t think you can begin to imagine how surprised I was when the blue lights showed up behind me again. I had done nothing wrong, I wasn’t speeding, I stopped at the light, the hell was going on??!!??

Anxiety and I are not well acquainted – at all – so I was perfectly calm and all together waiting for whatever evil awaited me in the form of a town cop…. License out, rental agreement out, wait for it… wait for it…. Now – police officer at the car asking me if I didn’t see him behind me. I replied that of course I had, that was why I got out of his way. Then, I looked to see who had busted me (this gets good) and it was one of my high school crushes. Which probably would have been absolutely no big deal had I not said, “I had SUCH a crush on you in high school.”

Short story long, I didn’t get a warning or a ticket – just a bit embarrassed.

Saturday. The day. I kept mistakenly calling the event Homecoming or Prom – it left me with that same kind of excited/anxious/nervous feeling. In the afternoon, I went to visit a friend who was in theatre with me in high school (yeah – I was a pretty big nerd even back then). It was wonderful to be able to face to face with her rather than only being able to Facebook with her. She looks lovely, she looks happy, her children are charming (even, nay especially, the 18 year old).

Got back on the road at 4:30 – looking to find a friend or relative who’d let me get dressed and pressed at their house when I got a text from a friend telling me that the pre-reunion was going to be at the town tavern.

Super quick, stopped at CVS, got some disposable razors, a sample deodorant and some lotion. Dry shaved my legs in the parking lot (only one small nick), lotioned, freshened my pits and I was off. Still in my comfies – but closer to ready than I had been 4 minutes prior. Got to the tavern, had me a drink (loving that Sailor Jerry) – chitchatted a bit and we were ready to go. Until I realized I was still in cut offs and a tank. Hardly the statement I was shooting for. Changed into my dress in the car, slapped on some eye color and mascara and I was READY.

The reunion was truly a fantastic event. Most everybody looked just like they did only the adult version. Most everybody seemed like they had their same core – just with new experiences added on for color. Most everybody actually wanted to catch up with classmates. For most of us, the lines that segregated us into cliques had been erased. For most of us…

I got lost on my way back to my sister’s after reunion. For 3 hours. We left the club at 1:00, chatted outside for about 30 minutes and then went our separate ways. I tried to utilize the GPS – but the direction lady was messing with me and leading me to places that I was even less familiar with. I problem solved this one on my own (because 3:00 am is too late to be calling for backup help) and came to the conclusion that if I could retrace the route back to the cape, I would be able to start anew to find my sleeping place. I finally got home at 4:30, collapsed in my clothes and was awoken by happy children not quite four hours later.

The rest of my visit was peaceful time with folk who love me.

It was just what I needed. I spent more time crying over the five days I was gone from home than I did in the past year combined. Friends were asking after Honey. But it was more of a, “How are you doing with all that is going on?” type of thing. Which of course would get me misty. If we are being clinical, or cracking jokes – I am generally okay. When I have to talk about our experiences, I process at the same time. I don’t want to be processing. I think I did okay when I was just riding on cruise control. It is scary to think about what may happen.

It’s funny. I have been feeling like I have really matured in the past couple of years. That the physical changes I have experienced since Blob are a reflection of my new emotional growth and maturity.

Then I go back to the town I grew up in, got stupid while driving, got pulled over, got lost quite a few times, dry shaved my legs in the CVS parking lot and dressed for an evening event in the parking lot of the bar I was just leaving. Cuz I am that kind of classy broad.

And I really thought I had grown up and changed.

Silly me.

love you (and going home again)

crying? theres no crying in baseball.

so here i sit in the atlanta airport

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.