Sunday Papers for 9/29

It looks as if our boys are on hot streaks.

They both played yesterday and won again. They get pretty excited. This puts Mitchell at 3 and 1 and 

Reese at 4 and 0.

Pretty proud of them!

There is a lot of practice that goes into these games and they are working their buts off so they deserve the winns.

So for us this week it has been a not too exciting week, it seems as if you could classify it as maintenance on the medical front. We started both chemos again on monday, one of them runs 5 days one runs 7. (I know i have mentioned this before but the 5 day course strikes me as a little convenient. They did the five day treatment for the radiatio as well, monday through friday.

We had a follow up mri at the end of last week and we got mixed messages about the determination. The physician that looked at the results said he say a progression while my physician was lees sure, so we have another one scheduled for next week. This should be the one to pay attention to.

Since we started the new chemo course i have noticed changes in my illness:

• My vision from my left-occipital log seems to be deteriorated.
• Headaches are constant, even though medications
• My higher level word processing is either worse or just pointed out, embarrassingly so, by my speech pathologist. (Which is really what i would expect from her, find the issues and address the directly)

So i chalk this up to just a normal recovery process right, Optimistic Doctors, Optimistic Bec and myself. No problem.

But thoughts need to be addressed: this thing IS gonna get the better of me eventually. Preparations need to be made just contemplating the list is overwhelming. The afterlife is not for me, that goes to my survivors, but the ideas and goals and hopes and plans and memories and mistakes made, these are mine to share.

But where to start? I have a list started in another forum, but it's a list and that is not the proper format for sharing. I think once that these details will start to come out before too long and i will share as much as i can with my readers but for the most part they will be hand written in the journal that LittleS gave me a while back. That should be the perfect forum i think.

Anyway, I hope everyone has a good Sunday, B is making bacon and eggs and muffins (she is the best) and i am starving!!!!!

Back to Basics

Today i restart my chemo for a month.

There are two different meds starting, one runs for 30 days straight, and on only for 5 days, (again with the weekends off, how convenient for Timodar). Anyway, not really looking forward to it, i am just want to sleet to 4 to 5 hours sleep a day, i can only hope that the sleeping issue is from radiation and not the chemo, cause i really really want to feel better.

Have a good day!

One way tickets revisitede

So on this exceptionally chilly thursday morning i am thinking of what it takes to to become whole again.

I feel as if pieces of me are missing, call it a chemical reaction to all the meds i am taking, or a normal feeling based on my surgery. Regardless, the pieces of the jigsaw puzzle do not all seem to go together in the same way as they did previously. It;s still a puzzle that fits together but now it makes a Pony instead of a Lighthouse if you know what i mean.

It feels as if i am a new (different) person, i have different skills and abilities (not superhero variety, that would be fine), but now i have to figure things out. I have to read and reread things to make sense of them. If, for example, i stop writing this blog in mid-paragraph for some reason i will need to go back to the beginning of the section and reread in order to pick up my thread and continue. As if someone else had written it. (My speech therapy knows EXACTLY what i am going through, and has exercises and drills to assist, (i thought i was unique)) 

I know what i know, I have been looking through some of my advanced Cisco security books, I know this stuff, within limits. I haven't lost anything that i am aware of (!) But the assimilation of new knowledge is difficult to say the least. Like i said though, my speech therapist has zeroed in on the exact problem area and is forcing me to work on strategies to learn the brain new tricks. I need to get this functionality back my ability to garner and synthesize new knowledge from existing info has always been a tool i've used to it's maximum.

For example, we picked up a new MFD with scanner, fax and printer. The hardware is hooked up in minutes, it is a logical connection that is darn near universal. BUT the software to control the device is independent and all based on the manufacturer, that is where the trouble begins. This might take two days to finish....feels kind of helpless.

So as far as a One-Way-Ticket geos  Yes, they are all one way, your destination might be the same but the journey will change you forever.

Trip update,

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Erin and i came up with a plan......we found some fake gold and silver pirate treasure on amazon, we are gonna hide it on the beach and make a treasure map to put insife a bottle witha cork for the boys to find and follow while at the beach. Shhhh, dot say anything.

Everything else seems to be in place, the only item that makes me nervous is the bout lease, we haven't heard from the owners ye, they may be busy with other charters though, so i will be patient.

Have a good day people!

No Update

As expected, the DR did not have enough time between therapy and Dx.

They rescheduled the another MRI for a couple of weeks to see if he was looking at pseudo-progression or progression. The technician called it progression but we are discounting that based on the similarity of the way they look.

We'll see!

One Prognosis coming up!

Today B and i meet with Dr S for the post-treatment-assessment.

Couple of issues at hand:
1. They scheduled it early based on my headaches (2-weeks early) This makes me wonder about the ability to Dx something rather than look for the cause of the headaches  I mean i am all for the no headache thing, but i would rather have....you get where i am going.

2. They bumped my appointment again, 4 days earlier because Dr S has an out of town appt he needs to attend to. Alright, does anyone else see an issue here? I do like this Dr especially his PA, she is EXCELLENT at her job and more than makes up for anything i find to complain about. I do trust them to make the proper decisions, but lately i want a schedule and i would really like it to be stuck to.

3. I don't want any bad news. Thats not too much to ask is it? I believe i went over this before, but in a nutshell, the Dr described a scenario where it is going to come down to my assessment of my issues to make his determination of my status. AWKWARD. I truly feel no different from day one of chemo and rad. Should I? should the surgery have done it's part and left little for the chemo and rad to do? That is how it feels. With the exception of side effects that are beginning to clear up a bit. I guess that is good news, i guess?

Appointment is after 2PM today, I will post and let everyone know what the verdict is.


NE Way:

We got the football pics back from the photographer, (nothing digital, imaging that). I am mesmerized by to looks on the faces of the boys in their solo pics. I can read so much into the expressions, what they are thinking about, what they are hoping for and more they are like little open books to their parents, above the fun they are obviously having i see pensiveness in R's eyes. For M i see a lot of confidence in his game, R needs more of that.

INSIDIOUSNESS (no, i didn't make it up)

On this Monday morning i have awoken with an realization that i have a tendency to be a prick. And left unchecked my prickishness will creep in and take over my interaction with people. I try to remember that no one knows what is in my head, weather i am on the verge of falling asleep, of nauseous or joint pains, no one knows but my reaction seems to be as if they should know that is a ridiculous notion. For me to expect others to behave in a certain manor based on my mystery feeling of the moment is an embarrassing notion that i need to get under control for the sake of my relationships with people.

So let me say this clearly right now: I will improve and explain and empathy and not blame anyone for MYSELF. I also will remember that OTHER people are involved in this process and they CARE about me, that is a precious commodity and it is valued to me, I will not be squander it by my insidious prickishness.


Pinky Promise

Next Ups!

Both boys won their football on Saturday!

Both of them made key blocks and plays during the game, pretty awesome, you can feel the mood around them lighten and be more happy and outgoing when the game is in the win column. Keep is up guys!

This week's happenings include no change on my medical condition except for soreness in the leg joints. A little bit of feeling like i have been frozen in this in between place, between recovering and still being treated. and no communication from my medical contacts, i don't need constant communication, but c'mon, it's me after all... :-)

I have my follow up MRI on Tuesday, this will be the biggie. Gonna give Med Onc Dr an assessment of the current status of tumor. He has mentioned several times that there is an effect he refers to as pseudo-progression, this is where in the MRI has, apparently, a swollen tumor attached. But in reality what it is is is an aggravated area of the brain and it is swollen. The plan if this is seen is to A) surgically examine and remove or B) Use my assessment to determine if it is getting worse or not.

My assessment is not going to of much use, the only i feel is TIRED. If tiredness is symptom of anything then thats the issue, it is overwhelming. I sleep for an hour or so at a time, wake up for an hour or so then back at it, 24 hours a day. Thank you for all your sleep suggestions but getting to sleep is not the problem, staying asleep is. I have a cure in mind, and my, ahem, alternative physician is working on it for me, we'll see how it goes. 12 hours uninterrupted sleep would be just what i need, do it 4 or 5 days in a row,,,oh happy days.

So we are planning a trip to Disney before the next big Medical Event, (Chemo, RAD, Back to Work). After working on the details for a  week i have a new found respect for travel agents, sooo many details to look at. We are going to do the Disney hotel for a few days then rent a sailboat and stay out on the water over night and see the big fishes, hopefully. Little R is scared of the sharks and flying, i remember being afraid of flying. M seems to take it it all in stride, of course he does, he is so grown up at 12.  He has flown before (at 3, i think) so he is the expert he will share all his flying advice with his brother and let him know that the shark-week documentary we watched was actually a movie disguised as a news show, sometimes the dynamic between them is stunning in its brotherly-ness, if ya know what i mean....

Intermission!

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So we are facing some changes on the homefront as far as people helping out go. I don't want to go into too many causal details, but let me just say it's me, maybe? Not really sure it gets complicated and secondary issues come into play, but i do have a tumor so i can take it and it's like teflon, rolls right off. And I'm coolio with it. Shahrazad has found another place to live right down the road less than a mile away so she will be available in a pinch like she has been from day one (thank you!).  I think in this case it comes down to familiarity  breeds familiarity to coin a phrase. Over the last few weeks tensions have been slowly growing over different things i have mentioned, in a perfect world we could reset everything to 0 after conversations but nothing works like that.

The boys will be missed greatly, they are wonderful kids to have around not just for my kids but they are genuinely good kids to have around. i will mis their jokes and games. On a daily (ok, maybe not daily) basis lol.

Everything will be fine, sisters will heal, boys will see how the healing is done, and everyone will be wiser for it.

Tadaa!

Have a Great Sunday!

The Neverending Story

I seem to have a occasional recurring theme, think of it as My Biggest Complaint about GBM!

This week it is sleep. I would give a lot for a good night (or more) sleep. I seem to get no more than 2 hours at a time then i am up for anywhere from an hour to two before i fall back. During the day this doesn't happen, to many little things to do to get in sleep. At night though, i just ramble around the house, play with the computer (no games, they don't interest me for whatever reason).
i'll make coffee at 3:30 or 4, maybe blog a bit, listen to music whatever. Anything but actually sleep.

I know GMa will be here around 7am for my 8am appt, hell, thats only three hours, a couple cups of coffee and it'll be time to go. So I'll smoke 5 cigarettes, eat 5 nicotine gums. Maybe some cereal before i medicate, Watch my new favorite shows (anything with GOLD! in the title is fine).

The primary way to pass my time is to pace until i wake the dogs, the big one, Z, sleeps out in the living room, the little one, Z sleeps crated (she has always been a trouble maker).

Anyway: I just wanted to say HI!

PS: Shaharazade was asking or an after surgery pic of my brain.

Click here to see it

The Shellfish Game (or OMG WTF is he talking about)

Let's play a game!

The Shellfish Game is what i call it. This is where i hide a fact in plane sight somewhere and you try to figure out what i am talking about.

Sound like fun? No? Not to me either.....Lets skip it...

Moving on....

Look at this pic

My pre-breakfast snack, this without chemo involved....I don't even want my Lucky Charms now :-(

We are all products of our environment, some nature some nutture, but ALL product. Kids are born as a blank-slate, tabula-rasa is the clinical description i believe, on the tabula you will have predisposition or a trajectory toward certain behavior characteristics (nature), after that parenting and environment kick in and begin affecting the innate trajectory an infant/youngster/ankle biter would have. This is, obviously, a good thing without the influence of our peers and parents you can imagine where we would wind up as a society.

So...we as children have needs and find ways to describe them to our caregivers and the caregivers respond accordingly. Whether the response is affirmative, negative or to feed or whatever, the feedback to the child is nurture, it will influence the trajectory of the child's in-born  desire to fulfill it's need, either by accepting the positive feedback or by working through the negative feed back and accepting that this (whatever desire it was), is not available or appropriate at this time, these feedbacks go into formulating our new trajectory as a human.

Here is a quick summary of what i think i have tried to say:

Parents are like a grapefruit, they contain all the necessary ingredients to create grapefruit juice, when you squeeze them (with a desire or a nature-request) you get grapefruit juice out of them. Regardless of what the response, the grapefruit juice comes out for the child. It is not the grapefruit that the child receives, because the grapefruit is a product of the parent's trajectory and cannot be given, it is an internal process. SO....the juice is given to the child by consuming the juice this goes to formulating the next generations grapefruit .

Now for the Children: siblings born into the same house will still have there own trajectory at birth, too many variable in the brain for them to be the same. But what happens to the grapefruit? How can the grapefruit juice from the same parents taste so different? Is the juice affecting the grapefruit? how can that be?
Squeeze a grapefruit and taste the juice, you cannot affect the grapfruit through the juice.

Why then the enormous difference in response from two siblings?

Welcome to the Shellfish Game!