Thursday, November 26, 2009

Thanksgiving rethought!

I've always hated Thanksgiving; felt like it was a celebration of woman's slavery. Rising at an ungodly hour to stick my hands inside a dead fowl; Filling the goopy cavity of that same fowl with a bread concoction that has no recipe; Preparing potatoes, vegetables, relishes and pies while visions of football games dance in the dreams of sleeping family members.
By the time dawn has broken, the dead thing is in the oven, pies are waiting on the sideboard, veggies are awaiting their demise on the stove and I'm exhausted.
By Noon numerous family members have arrived, the living room sounds like a professional sporting event, glasses are clinking and I'm chained to the stove - locked in the kitchen jail, preparing for the onslaught of "The Hungry Family." Oh yeah, did I mention that tablecloths and napkins had to be ironed and a table for the multitudes also needed to be staged and set as a wondrous background for the dead thing centerpiece?
Once everyone's hunger has been satiated the punishment continues as the now destroyed table masterpiece is disassembled, mountains of pots, pans, plates and cutlery are moved to the kitchen counters, the family moves back to the TV and I move to my place at the sink---where monotonous hours await me washing, drying and putting away the debris from invasion. Did I say I hate Thanksgiving?

This year this is no family invasion, my parents are now both gone and the children are off to celebrate with their significant others. It is just George and me.
We are having a small chicken, some veggies and taters and sharing a small pumpkin pie. The food must all be ground so he can swallow it but neither of us mind this change today.
We hold hands at the kitchen table (this year totally devoid of any staging) and quietly thank God that we are able to have this meal together. There is no football, no alcohol, and no pressure. There is just the two of us...together....appreciating and loving the the fact that we are here, sharing the pain and joy of life and growing closer every day. Did I say I Love Thanksgiving?

Tuesday, November 24, 2009

The torture has begun. The Dr’s are allowing radiation to begin while the fistula is still open. The delay of treatment evidently outweighs the risk of this thing not healing.
So…every day I take my hubby to the city, run the parking gauntlet and the hospital corridor maze, enter the elevator and plunge into hell.

Once he changes into a breathtakingly beautiful hospital gown a thick, mesh plastic mask of his head, neck and upper torso is placed over him and bolted to the table, totally immobilizing him. The mask is so form-fitting that his eyelashes poke through the holes in the mesh. He must lay in this tortuous position, confined and helpless, for about 15-20 minutes while the radiation technologists adjust and guide the machine and give the correct dosage. George is claustrophobic so these treatments are particularly hard for him. He freaked out so badly on the first treatment he now has to take sedatives before we leave the house.

On chemotherapy days we leave the basement treatment area and go to the infusion room 2 floors up. There they give him more medication for anxiety, pain medication and the chemo drugs. By the time he’s ready to leave he can barely walk….but he’s happy!!!!! We must look a sight as we weave and stagger through the streets, reversing our morning routine.

I still cannot get used to being in the car with someone who cannot carry on a conversation. It is so weird. I’m alone but not alone. It’s not so bad when we’re home – he can use the EL and make faces and hand gestures – but in the car I cannot watch him and drive, too. I can only imagine how isolated and frustrated he must feel.
I hope I am being the support he needs. I can see in his eyes that this journey is dark and long and that he is scared. No matter how much I do or how close I stay I know that his journey is different than mine and that there are some things I won’t or just cannot understand. Its funny --- we can be so alone - together.

Monday, November 16, 2009

We've taken another step on the journey out of hell. Chemotherapy has started and so far, so good.
In the interest of trying to save George's hearing (already poor) the chemotherapy oncologist has decided to use a different chemo drug than originally planned. This type is not as effective but will help preserve his hearing. The positive side of this negative situation is that he should not have any hair loss and he will keep at least some of his hearing.
The treatment takes about 5 hours. They give him 2 different pain medications, Atavan and then 3 different IV bags. The combination of pain killers and anxiety medication puts him to sleep almost immediately. I may visit for a few minutes at a time or bring him something to drink, read, etc., but because of a lack of space I cannot stay in the infusion room with him. That leaves me to wait at the doorway to hell. I cannot sit in that waiting room; maybe with time I will be able to, but I am not quite ready to face the reality of the road ahead. Selfish...sure...,closed-minded...,probably...but for right now it is not something I can do.
Radiation was supposed to begin this week as well but a fistula has opened at the suture site of the stoma and that must be healed first.
Add another thing to the list of things I can now do---I can clean and pack an open wound as well as anyone!
At this point in time George is doing better than I am. He's healing very well (except for the fistula)and his determination and spirits are high. I am exhausted, short-tempered and very emotional. Scheduling his treatments, tests and doctor's visits has been a staggering undertaking and has pushed my job and my emotions to the very edge.
Putting his treatments on hold was the last nudge I needed to fall over that edge and, once again, I find myself sitting in a plastic chair crying like I'm five and my chocolate bar has been taken away.
Good Lord, I am tired. I've raised two children and have been with my grandson almost every day - and night - of his 14 years. I equate my exhaustion now with the exhaustion I experienced when they were very small. There does not seem to be much difference.....except that I am soooo much older now!!!!
I know this will get worse before it gets better but I'm sure some sleep and a decent meal (eating in the bathroom where he can't see me eat what he can't have doesn't count) would make it a little easier to bear.
My brain is fried, my emotions parallel the roller coaster at our local theme park and my patience runs the gamut from overflowing to missing in action. I pray for strength: strength to wade through this jungle; strength to be everything George needs me to be and strength to not lose myself while trying to obtain the first two.

Wednesday, November 11, 2009

Things I've learned so far

Never, ever, stand directly in front of a laryngectomy patient when he coughs

If you’re given a PEG tube, make sure the cap is firmly taped shut at all times

Don’t cough while using the PEG tube unless you want the “food” all over your lap

Visiting nurses don’t always know everything

Neither do doctors

Patience is not an infinite commodity – it does run out

A doctor will not tell you everything you should know – only what he thinks you need to know

Standing up for your loved ones health care is perfectly ok to do- and should be done whenever that nagging feeling hits – the one that says…”hmmmmm, something is just not right here!”

Just because they can’t talk doesn’t mean they can’t say some really mean things

You are allowed to cry, get angry, feel overwhelmed and hate what has happened to you and your loved one. Just make sure you don’t stay that way

Yes, it is happening to you, too- No matter what anyone else says - this is your disease too.

A good hospital billing clerk is hard to find – a good insurance company representative is an even rarer event. Count yourself among the angels if you find one of these rare people…cultivate that relationship. They are gold and can ease your mind about saving your wallet.

You will be treated like you’re not there -- and, no, it is not ok -- it is ok to remind them that you are there and are involved in the care giving end of things. Sometimes it is ok to be forceful about that!

Do not wash your loved one’s back while steadying him with your hand on his neck……he can’t breathe and will start to make the strangest gyrating motions to get your attention!!!!

Things that are leaking do not necessarily need immediate medical intervention – look first…you could be surprised at how simple the fix is.

A hug eases a lot of worries

Wednesday, November 4, 2009

When George had his surgery one of the people that came through the revolving door of medical personnel was the speech therapist. With her best optimistic bedside manner she presented him with the Electrolarynx (EL) - a hand held device placed against the neck that sends vibrations through the neck, allowing him to have "speech." Until the other day it sat under an end table in the living room - gathering dust(have I mentioned George is just a little stubborn?).
Well...he has decided he does not like living in silence and does not like the idea of learning to use the TEP put in during surgery, so he broke out the EL. For those that aren't aware, a TEP is a small plastic tube-like structure that is placed in the trachea and by closing off the stoma[hole in the neck] allows air from the lungs to be forced into the esophagus to make speech possible. I was so happy he wanted to try to get back to living life again! I listen intently, trying to read his lips while he is using it and even try to anticipate what he's saying but I Cannot Understand a damn thing he says!!!!! At best he sounds like Steven Hawking with a cold - at worst he's unintelligible. To me it sounds like a hive of very angry hornets! To make it worse he has discovered that he can "buzz" it to get my attention. He's really funny with it and I laugh when I hear it (though only to myself, I don't want to "encourage" this buzz behavior)but if I hear "buzz,buzz-buzz,buzz" one more time I'm going to toss it out the window.:-) LOL!
He is feeling much more confident now that he can communicate so this is a good thing. Why he waited so long to make his life easier I will never know - it's just George -
The doctor wants him to use it only as a backup option should there be a problem with the TEP but it is something he has control over right now so it's good that he just "buzzes" away!
It's funny - the person that understands him the best is our 14 year-old grandson. He seems to have no problem whatsoever. I guess the EL sound is closer to his rock music than it is to what my ear is used to.
Chemo starts next week - this week is being spent running back and forth to all his surgeons to get their final approval to start the treatments and to get the mask completed to start radiation. He is healing well and I am told that this is a good thing (is this the calm before the storm?). I have to make him "eat" more to keep up his weight but other than that the Doctors all say he is ahead of the curve. I'm not quite sure exactly what they mean by that but It sounds positive to me so I'll take it! :-)