Tuesday, January 19, 2010

Radiation is OVER!!!!!
For the first time in what seems like forever I do not have to get up in the wee hours and drive into the city. I am not going to know what to do with myself!
I hope this gives some type of closure to my hubby. I'm extremely happy that this part of our journey is complete. George doesn't seem to feel the same way- in fact - he seems rather removed from it. I imagine this is something that must sink in, something he must mentally kick around for awhile.
The doctor has also ordered some medication for his anger and depression- thank goodness - so that may have something to do with it.
Now, hopefully, George can get on with the job of recovering and will have a more positive outlook for the future.
It's been such a long, hard, road but we're both still standing. Recuperation and recovery still stretch out before us, but for today, we're breathing a sigh of relief and being thankful that we've made it this far.

Friday, January 15, 2010

He shuffle steps up the hall banging on walls with his hand and on the floor with his cane. Newspapers soar into the air, diving under the table as if looking for a place to hide. Innocent objects are hurled to their death as Hurricane George roars through the dining room. My husband is having a melt down. A Three-Mile Island, 10 alarm, all-hands-on-deck, meltdown.
Bang! Bang! Bang! The cane hits the floor over and over, harder and harder. To that sound is added the stamping of feet, the crash of glass and the crraack of a wall giving way.
As weak as he is he still has enough force to put his fist into the wall. The resulting crack and hole reveal more about his state of mind than words would ever divulge.
His energy spent, he stands amid broken glassware, shattered dishes, and pieces of wallboard. He is at once horrified and embarrassed. Salt, pepper and sugar add to the crunching under his feet as he makes his way to the living room.
Once on the sofa he collapses into sobs. His shoulders heave as tears roll down his cheeks but he makes no sound. My heart is breaking for him. He keeps mouthing “Why? Why?” over and over. I can’t hug him--his neck and shoulders are too burnt and sore to touch. I have no words to say that will soothe him. His anger and humiliation are too great for tender words or touches. He is not yet ready to allow me into his hurt. I can see he needs to feel this, needs to go through it and come out on the other side and he needs to do it on his own.
This is another kind of waiting I do. One that is so much harder than just sitting in a chair. This is the wait that says “It’s ok – I understand, I’m here.” It’s a wait that doesn’t judge or condemn. This wait says “I’ll be here when you’re through. I’ll be right here when you’re ready to reach out.”
He says he wants to die. He doesn’t want to be a burden on me. His new term is “Living Hell.” He lives there, with no relief, day after day after day. He wants it to end.
At this point I don’t know what to tell him. I can only imagine how he feels and why he feels that way and I don’t know how I feel about that. The things they haven’t told us still trump the few things they did deliver,
Nobody –and I mean No One – said anything about human hurricanes in my home…..I would’ve gone out and purchased storm damage insurance or at least had a storm party so there would be folks around to witness the phenom.
This is another one of those things I know will pass with time and will just become part of the blur that is recovery but…Whew……I didn’t know I was going to need armor! 

Thursday, January 7, 2010

Here’s a bit of the healthcare system at its best!

George had to have all of his teeth surgically removed the day before the laryengectomy due to a jaw infection. Without this surgery the laryngectomy could not be performed and George’s life could not have been saved.
We have now been informed that the insurance company will not pay for the dental surgery. They do not cover dental procedures as they are considered cosmetic in nature.
I spent most of the day on the phone explaining to various customer service representatives, supervisors and a clinical care insurance supervisor (whatever that is) that his dental surgery was a medical necessity not a cosmetic desire.
Not only do they not want to cover the surgery but they will not pay for any kind of dentures, implants, etc. The one customer service rep told me the insurance company does not consider teeth to be a necessity! So -- here I am, on the phone, jaw now on the floor, trying to speak in complete sentences and wanting to put my hand through the phone and shake the life out of this woman; all the time trying to digest the reality that teeth are now a cosmetic frivolity not a quality of life necessity or a physical need.
This young woman then proceeds to tell me that among the things they will cover is the prescription medication Viagra. That “it is a medical necessity because it provides a fuller quality of life to the patient taking it.” SHE ACTUALLY SAID THIS TO ME!!!!
I guess God just gave us teeth so we can look pretty when we smile!
I’ve spent most of the afternoon shaking my head. It’s starting to be funny – in a sad sort of way – but this makes no sense. Somewhere, in some office, far, far away from the reality of life, sits an insurance executive with a mouth full of teeth and no love life! :-)

I finally spoke to the surgeon’s office and they are going to assist me in appealing the decision. Keep your fingers crossed….

Wednesday, January 6, 2010

Here's something I heard today on TV- one of the truly rare times anything on that vast wasteland made any sense -so I'm sharing :-)



Monday, January 4, 2010

I’ve been trying to blog but have been unable to write about anything without sounding whiney; and that just seemed “unholiday.” The holidays were nice and I am extremely grateful that my beloved was here to participate in those special days. It felt almost…well…normal.
I keep deluding myself into thinking things are becoming normal. Then suddenly, without warning, the new normality sinks in. A recent visit to the oral surgeon was one of these times.
A small bone spur had to be removed from George’s gum. The surgeon came in, looked in George’s mouth, grabbed a pair of dental pliers and started to remove the piece. No warning, no medication, nothing. From my chair across the room I watched in horror as my husband’s hands curled around the arms of the chair and his legs and body stiffened. I realized “Oh my God, he can’t even say “Ow” or “that hurts,” or even “Stop!” I bolted out of my chair yelling, “hey-you’re hurting him." I felt so helpless. I looked into George’s big, blue eyes and could see his pain and fear. If I felt helpless I could only imagine how powerless he felt. I’m afraid I wasn’t very polite with that young surgeon but I’m sure he will never again assume his patient can communicate.
I should relate that the chemotherapy treatments have been completed and George has had no hair loss, no nausea/vomiting or any of the other interesting side effects chemo is known to bring. Radiation will be finished on the 18th of this month. He is getting fluids daily and is weak, frustrated, and very, very short-tempered.
The radiation oncologist wanted to keep him overnight at the hospital a couple of weeks back because his vitals were so low. George’s answer to that idea was “No Way in Hell! You can either remove these lines and let me out of here now or I take them out and leave, but either way I’M LEAVING!”
You guessed it – they let him go home! Now they ask me what his “temperature” is when he comes in in the morning!
Let’s hope his “temperature" stays “normal” until the treatments have all been completed.