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…
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)