Wednesday, September 30, 2009

Wow- we made it through a whole day with no major obstacles to overcome!!!!!!
I did all his wound cleanings and dressings, took care of all his medication and insulin injections and got all of his feedings into him (the enormous catheter syringes are for attaching to the PEG tube to feed him...Thank God... I was starting to wonder what I was going to have to do with them...).
The suction machine is working well, the pain medication is making George sleepy and quiet, the phone is not ringing off the hook and I actually had 15 minutes to myself while it was still daylight!!!! A good day...

Monday, September 28, 2009

Once again I'm sitting in a hospital. Not in a big, efficient city hospital but in our small, hometown emergency room. My husband has just arrived via ambulance after coughing up a small,thin tube that was attached to the inside of his nose and is now hanging out of his mouth.
After getting him fed, medicated and situated on the sofa I'm in the middle of preparing his bedtime medications when I hear him start to cough. Walking into the living room I see him doubled over and holding his mouth. One look at him and I know something major is wrong. There is a very small pink tube in his mouth and each time he coughs it pops out - when he stops it slides back in. I grab the phone, hit 9-1-1, grab onto the pink tube when he coughs again and am on the phone with the surgeon when EMS arrives. Poor George is petrified. He's holding onto the tube with his fingers; without teeth he has no other way to keep this thing from disappearing down his esophagus. It's immediately apparent the EMT's have no actual experience with a laryngectomy patient. The first one on the scene tries to give George oxygen by using a face mask. Even after I tell him George is a neck breather the EMT is still attempting to place the make over his nose and mouth. They begin loading him into the ambulance as I am explaining what is needed. The squad members are now asking me what needs to be done. They did not know that he cannot have oxygen without humidification. These guys are wonderful but the one admits this is the first laryngectomee he's dealt with. As we ride towards the hospital I am peppered with questions concerning the multiple surgeries and care requirements. They are genuinely concerned and want to know what to do and how it's done.

Our arrival in the ER resembles a celebrity sighting. Everyone wants to see the patient with the tube sticking out of his mouth. Doctors and nurses surround George and begin firing questions at him. I get the "I'm talking to him" attitude until they realize he cannot speak. Then they all want to see the laryngectomy patient and ask questions. Even the nurse admits they don't see a lot of these. George's surgeon is now on the phone and while he is speaking with the attending ER doctor portable x-rays are take and blood is drawn.

George is coughing again. The nurse is trying to calm him and make him more comfortable but the coughing continues. Before anyone knows what is happening George reaches into his mouth and pulls hard on the tube. He has just pulled out an 8" long, clear, plastic tube (about 2" round)!!! The small pink tube is stitched to this plastic tube. What the Hell is this????? The nurse runs to get the doctor - she has no idea what it is either! Well, at least the coughing has stopped.....

Ahh - the things they don't tell us......the plastic tube is a sheath placed in the esophagus after the surgery so the throat doesn't close up while the new esophagus is healing. The thin, pink tube was stitched to it AND to the inside of his nose to help keep it in place. Ohhhhhhh - George is angry and so am I. We asked about the tube in his nose and were basically told not to worry about it. Ya' think they could've told us what it was and that there was another tube inside his throat?!?!?!? It sure would've made things a lot easier if we knew that the tube hanging out of his mouth wasn't life threatening! Jeez Louise, what a fright! Poor George...coughing unknown tubes out of his body, scared out of his mind believing he was going to die, rushed to the ER by ambulance.... All that could have been avoided if only someone had taken the time to answer our question and to explain what it was and why it was there......

Friday, September 25, 2009

He's Home!!!!! :-)

After much to-do between the surgeons, in-house doctors, etc. the decision was made to let George come home a few days earlier than anticipated. I was given a portable suction machine (that must be in the car at all times), a bag full of medications, laryngectomy accessories (a word I thought more pertained to belts, shoes and bracelets), appointment cards, a small novel of care instructions and told to bring the car to the front door.
I feel like I did when I brought my first child home from the hospital. Scared, excited and happy. Yippee!!!! He’s coming home!!!
I bundle my guy into the front seat - with the suction machine in his lap - throw everything else into the back seat and off we go. Once more the rain is coming down. The ride home is eerie. I’m in the car with my husband right beside me but I feel like I’m alone. There’s no amiable chatter, no discussion of the daily minutiae of our lives. The slap of the windshield wipers and the drone of the tires on the wet pavement are the only sounds in the vehicle. The silence is oppressive and uncomfortable. The realization of how our lives have changed is as oppressive as the silence.

While he was in the hospital I had his favorite chair brought into the living room from the den for him and I’ve set up the suction machine and humidifier next to it. He is now safely ensconced in his chair with “Mr Thirsty” in his lap and his humidifier fastened around his neck. His left arm, covered in bandages and doubly wrapped with an ace bandage, is nestled on a pillow. Ok…. NOW WHAT DO I DO WITH HIM?????
It has hit me that I am now solely responsible for his care.

I’d been given a quick ‘how-to’ on the use of the various machines and boy am I glad I paid attention. The hose has come off of the suction machine and George is in a panic. He cannot swallow at all so “Mr. Thirsty” is VIP equipment! A quick reattach and all is well again.
I cannot believe the amount of medications I need to keep track of. He also has feedings at 8am, noon, 4pm and 8pm, blood sugars to be taken before each feeding and insulin after each one. Everything has to be written down so we can keep track of calories, insulin, sugars, etc. Seeing as how I cannot remember to take a vitamin every day this is really going to be a mental agility test….sure hope I pass!!!!!
Now – if I can just get him out of the chair and into the bed….

Wednesday, September 23, 2009

The internal hospital machinery is preparing to spew forth its latest laryngectomy patient.
There is a small warehouse of equipment now residing in my living room. There wasn’t this much stuff needed when I brought a new life into the world! Oh my hell…what in blue blazes is all this stuff? There are cases upon cases of liquid (adult formula?) food. There’s a suction machine, a humidifier for his neck, tubing, jars, canisters, suction wands, more tubes, tracheostomy supplies we do not need (oops…somebody goofed), tape, gauze, sterile dressings, gallons of sterile water and saline solution, and a multitude of things I cannot identify. Can one person possibly need all these things? Will he really use all of this? Are they kidding me??? What’s this box…..huge catheter syringes???……for……?????????
And…in a house made for only 2 people … WHERE AM I GOING TO PUT IT ALL?!?!?!?!?!?!?

Tuesday, September 22, 2009

Ok- word to self....Self - do NOT stand directly in front of a laryngectomy patient when he tries to cough or sneeze!
My laughter fills the room, dances out the door and down the otherwise quiet, subdued hall. George had a coughing fit and like the good caregiver I am I tried to help cover his mouth with a tissue. Duh - while I was busy covering his mouth his stoma was busy clearing his lungs right onto my cheek. The poor man is mouthing "I'm sorry, I'm sorry," but all I can do is double over with laughter! I believe I have just committed my first caregiver faux-pas as well as learned my first laryngectomy lesson!

Sunday, September 20, 2009

Radiation oncologist, chemotherapist, home care scheduler, speech therapist, nutritionist, house physician, surgeons, residents, medical students, RN’s, LPN’s, CNA’s. The alphabet soup of healthcare cycles through his room like planets orbiting the sun. They speak a language of healing, of health, of hope. They do not always speak a language we understand.
I am being educated in the art of being a pro-active caregiver. “Doctor Speak” is no longer being met with the polite head nod. Instead, I am stopping them, asking them to repeat, asking to have those words put into layman’s terms. My follow-up conversations now begin with “so, you’re saying….” With the exception of the chemotherapy oncologist, the physicians have all been more than willing to work with us and to make sure we understood what they are saying. Getting information from the chemotherapist is akin to driving at night with no headlights. She seems determined to breeze in, speed through the information she feels we need and make a fast exit out the door. My husband dislikes her and I do not disagree. She is cold, impersonal, supercilious and dismissive of George’s hearing loss. I am determined to have all of our questions about chemotherapy answered. There is always the possibility that I will block the doorway the next time she enters the room, cutting off her escape until we are satisfied our concerns have been adequately addressed. Hmmmmmm...............

Friday, September 18, 2009

My life has been put on hold. I haven’t been to work in almost 3 weeks. I spend my days at my husband’s bedside, learning how to care for him, taking care of him, handling things with him. The evening hours are filled with phone calls from friends and loved ones. Late nights are for learning how to fill his shoes; doing the bills, taking out the trash and for finalizing my father’s estate. Somewhere in between all this the laundry, house cleaning, grocery shopping, appointment scheduling, vehicle maintenance, and mundane tasks must be completed.
I am putting one foot in front of the other, taking one step at a time and pushing on to the new “normal” life we’re going to have. Some people say “Lord, give me strength.” I say “Women are like teabags. You never know how strong they are until you put them in hot water!” It has become my mantra, the affirmation of my strength.
I've decided that if life is going to push hardships at me I am going to push back - twice as hard and 3 times longer! This may change my life but this will not defeat me!!!!

Tuesday, September 15, 2009

The days have been a blur. For someone who never drove to the city before I've become very adept at navigating the tangle of everyday commuters, potholes, traffic jams and weather.
George has passed the first critical days quite well but the realization that life is now an alien landscape over which he has no control is beginning to overwhelm him.
He has been given a suction wand the nurses call "Mr. Thirsty" and it has become his lifeline. Since he cannot swallow, this wand is a necessity. He has always been anti-drug and refuses to use the morphine drip button. The nurses have by-passed his hard-headedness by crushing up the pain medication and putting it through the PEG tube!
Like driving past a car crash and slowing down to see the carnage he can't seem to stop looking in the mirror he discovered in his bedside table. He stares at the warped and scratched image, gently probing the staples and poking at the stoma (the new permanent hole in his neck). He has wheedled a flashlight from a sympathetic nurse and is fixated on his new look. He is understandably very, very cranky. I however, am silently cursing that kind-hearted, flashlight carrying, nurse. I know he is one of those men who does better if he gets his knowledge a little at a time. Leaving him with the flashlight and no one to answer the resulting questions can take him down a road he need not go down.

I'm discovering a whole new world awaits me as "caregiver." Because he is diabetic and no longer eating solid food, the doctors have decided to take him off the oral medication he's been on and start him on insulin. The first of many objects (I'm sure) has now flown across the room. Oh, he is NOT a happy camper. He will need to learn how to do give himself injections and I've been told he will need help at home for the first few weeks. Thank goodness this is already something I know. His food and other medications will all be given via the PEG tube and I have been shown how to feed him, flush the tube and clean the site. Once I get the steps down pat I find this is something I do not mind doing. I am also now doing saline clean-outs - a method of clearing the trachea that requires squirting saline solution in to his lungs - something he will need to learn as well and evidently will become a part of his daily life. Wow- I KNOW no one told me about this!
In the next few days I will be shown how to do the deep tube suctioning of his trachea that will need to be done at home as well. This I am not too sure about (my first thought was eeeewwwww...) but I am sure this is definitely something no one told us about! It requires putting a 10-12 inch tube through the stoma, down into the trachea and suctioning out whatever is down there. Good Lord?!?!?, do they think I have an RN after my name? I somehow cannot see me doing this and I am more than willing to wait a few days to attempt it.
I've brought tablets, pens and pencils so that we may communicate. We now spend 30 minutes having a conversation that used to take less than 5 minutes. I find I am learning the art of listening with my eyes. While I am reading what he writes I find I must also read his face,search his eyes and watch his body language. We are once again children learning a new skill, eager and awkward, fearful but curious.
Watching him struggle in his new world and discovering all the care that will be needed I am beginning to question why after-care was not explained more in-depth. Saline bullets, suctioning, feeding tubes, wound care...things that a week or so ago did not exist in our world...things that no one mentioned......

Monday, September 14, 2009

I came home to find my entire house had been cleaned! The cleaning fairies (my wonderful cousins) had come and made sure everything was neat and tidy for me. They even changed the bed linens so when I finally got into bed it was heaven!!!
In my room, on my dresser mirror, I have remembrance cards from my mother's, father's(who died right before Christmas and with whom I was extremely close) and brother's funerals. I settled into bed and started to cry. I was asking my parents to be with me, to help me get through this, and questioning why they weren't there when I needed them the most, when all three cards simultaneously fell from the mirror onto the dresser. I immediately felt calm and at peace and knew they were there, supporting me, loving me, giving me strength. I know it sounds weird but it was the strangest, most comforting feeling I've ever had and it's the last thing I remembered until morning.

Again with the rain!!!! Every time something major has happened since the day we received George's diagnosis it has rained. I walk into the ICU, fully prepared today to see him at his worst but find I am totally unprepared for what I'm seeing. He is up, out of bed and sitting in a chair! Good Lord, I cannot believe my eyes!!!! He has a note pad on a table beside him and is already begging his nurse to get him out of here and put him back on the regular floor!!! I simply cannot believe the man I left flat on his back just hours ago looks wonderful!
The nurse tells me he fought his way up and out of the sedation last night and has amazed everyone in the unit. He has responded so quickly that the doctors have agreed to put him back on the head/neck surgical floor. I'm told they are waiting for a room to be cleaned and then we'll be on our way back upstairs!

We're back on the head/neck floor and he's being welcomed like a long, lost friend. He had 2 of the best male nurses I've ever met when he first was admitted and we are pleased to see both of these wonderful men back and caring for him again. Jack explains that because George was released from ICU so early the nurses will be in every hour for the first 24 hours to check on him and take vitals.
Jack hooks up all the various medicines prescribed-the drug pole is filled to its max-and starts explaining what they are, what they're for and the dosage for each. He explains the bag with the liquid containing his "food," the humidified oxygen around his neck and shows me the wound vacuum attached to George's arm that will help the "free flap" heal quicker and with less chance for infection.
In my mind questions are bursting forth like pop-up ads on a computer screen but, for the moment, I can't pay attention to them. I am so glad to see my love alive, awake and alert. The relief is as overwhelming as the fear was.
The most noticeable thing is George's color. Before the surgery he was pale and grey. He was beginning to look old and tired. Now he is ruddy complected again and while he still looks tired it's not the same tiredness I saw just 2 days ago. He looks like the man I fell in love with and married. It's startling to see the difference and sobering to realize how close he was to dying.
He's amazing!!!!! He's asking to get out of bed and wants to hit the bathroom with as little help as possible! Jack helps me figure out how to get all the various tubes and cords ready, shows me how to keep the wound vac adjusted and away we go...pole, vacuum, drugs, cords, plugs and George... off to the bathroom!

It's been another long day. As I prepare to leave I look out the window at the city beyond and realize it's no longer raining. The city is dazzling. I help George get settled for the night, turn out his room light and walk out to the first rain-free night since this all began. It feels good.

Sunday, September 13, 2009

Oh, The Things We Learn

It's raining again. My strong, independent husband lies flat on his back,unfocused blue eyes wide open, surrounded by machines blinking and beeping; abstract art alight in the darkened room. There are tubes everywhere. I lean over the bed and for a moment I cannot breathe. There is a large, raw, open wound at the base of my husband's throat. What looks to be 100's of staples line each side of his neck, starting behind each ear and ending at the gaping hole at his collar bones. There are more staples down his left arm ending in a huge bandage with a drain machine attached to it. WHAT THE HELL.......? No one said he'd look like this. No one ever said he'd be cut from ear to ear. Are they kidding? Oh Good Lord - this is NOT what I expected. No one said there'd be an incision running three-quarters of the way up his arm.
I cannot believe how numb I am. I have to actually remember to breathe. I keep thinking that he will be horrified when he sees what's been done. We asked questions. We listened to what the endless parade of doctors told us. We asked about post-surgery. This is NOT the picture they painted.
I begin speaking to him and rubbing his head. In his drugged state he does not yet remember he cannot speak and he tries to talk. As the frustration sets in his vital signs all jump. I keep talking to him, calming him, rubbing his head, holding his hand. The tears are falling, falling-but I can't let him hear them in my voice. I just keep talking. The vital signs are coming down- I know he hears me. My daughter and best friend both speak to him and he squeezes my hand. My friend tells him that she will be hitching a ride home with my daughter. His eyes fly wide open and he shakes his head back and forth. For a moment the room is filled with laughter. He has always said my daughter is the world's worst driver and to see him respond like that - even through all the pain and the drugs - is just too funny!
He drifts back off into sleep. I've been up since before his oral surgery (Can it really be that that surgery was only one day ago?)and the nurses and my ladies are telling me it's time to go home. Time to let him sleep and let myself relax.
I keep standing there, looking at my precious world, my head spinning, my heart pounding. I whisper to him and watch his vitals spike and then return to normal. He's heard me. He knows he's ok. I can go home now. I'll see him in the morning.

Thursday, September 10, 2009

16 hours. That's how long the surgery was. Thank God for my daughter and my best friend. They would not allow me to face those 16 hours alone and, like angels appearing out of the heavens, they arrived with their support, prayers, hands to hold and love.
I spoke with the surgeon, the plastic surgeon and the OR nurse numerous times. Even the anesthesiologist called with updates. "Your husband is a trooper," they all said. "He's doing just fine."
Somewhere around 8pm we were informed the surgical waiting room was closing and we needed to leave the area. The 3 of us just started to laugh - my husband is in surgery, he no longer has a hospital room we can wait in (they will assign him a new one after the recovery room) and surgery is not done. We are now "homeless" in the hospital.
I didn't realize I carried so much stuff around until we began grabbing, pocketbooks, tote bags,reading materials and my laptop. We looked like vagabonds preparing to find a campsite!
After much discussion we were finally directed to a waiting room (campground?) on another floor with assurances we would be found when surgery was finished. What is the saying "Famous Last Words?" It was like an episode of The Keystone Cops - the doctor on one floor, us on another, me calling the doctor as the doctor is trying to call me - nurses directing us to a staging area, the nurse at that area sending us somewhere else. Even as it was happening it was just plain funny!!! Thank God for humor.
We run into the surgical nurse on our way to yet another area and are taken to the ICU. George is out of surgery and I will be able to see him shortly.
Relief washes over me and I am so glad my ladies have stayed with me through this. They are the foundation of my support system. They wipe away the tears as I laugh and cry- so glad this is over, so happy he is going to be ok. They are both given permission to enter ICU with me and the three of us follow George's nurse through the door and into my new world.

Sunday, September 6, 2009

I am heartbroken. As I sit in the empty hospital room awaiting my husbands return from oral surgery I remember the first time I "met" him. I was his radio dispatcher and he was a voice on the other side. The first time I heard that voice I was intrigued and after months and months of radio transmissions and phone calls we finally did meet. I love that voice. I love the sound of it as I lay my head on his chest. I love the way he whispers to me. I love the laughter, the surprised sounds, even the anger. His voice radiates authority- demands obedience. But it is also soft, loving, caring. Many a night I wrapped myself in that voice, feeling secure and loved by it's sound. I love it all and it is all gone. Never again will I hear him tell me he loves me with "that voice". I took all those days for granted. How many times did I not listen. Oh the times I said "just shut up" in anger." My poor husband. My poor, poor husband.
His nurse comes in to see if I'm ok and, with tears coursing down my face, matching the rain cascading down the windows of his room, I tell her "No-but I will be. I'm grieving the loss of George's voice." With a hug and warm words she hands me a box of tissues and quietly closes the door.
This is the first time I've so totally, completely fallen apart. All I can do is sob- the deep, stomach-hurting sobs that feel like they are being ripped and torn from my soul. I am slowly realizing how truly life-altering this journey is.
I am so unprepared. I know I have to be strong for my husband, for our families but I can't do this, I just cannot do this. I am not strong enough, not smart enough... I cannot do this!!! Yet I know I must.

Friday, September 4, 2009

The doctors are great. The nurses are even better. They cannot do enough to make George comfortable. They include me in everything.
George is not playing nice today. He is yelling (WOW- has THAT word taken on a new meaning) at the nurses, the cleaning people...anyone that comes into his room is at risk. For someone who cannot talk he sure is getting his point across!
The surgeon wants another cat scan of his head and neck. Evidently radiation can play hell with the teeth and bones in the head so ...just to be safe... (I'm starting to hate that term) they schedule more tests.

My husband was a chief law enforcement officer. He is 6'4 " and weighs in around 240. The joke among my friends and family is that George is "Large and In Charge." He gives orders, he doesn't take them. He has spent 30 years telling others what to do, how to do it and when to do it. He is used to being obeyed. He is used to making his way work. When George woke up with that trach tube ( yes- another word I'm now using like a pro) he woke up on the wrong side of his life. He is NOT a happy camper. His control is gone. Others are telling him what to do and how to do it. He is now not able to speak or eat. His nutrition is now through the tube that has been inserted in his belly.

I feel sorry for the nurses. His one nurse stated that George is the perfect long as I am there. Oh, those poor, already overworked, men and women. I've known this man for 20 + years. I know that dealing with him when he's like this is not fun.

Oh Good Lord - what else can happen? A new doctor has come into the room. He is an oral surgeon and is there to discuss the most recent CAT scans. It seems there is some type of infection in George's jaw bone that necessitates the removal of all ...ARE YOU SERIOUS...ALL????...his teeth. WAIT A DOGGONE MINUTE...He just had a root canal done 2 months ago! His dentist said his teeth are fine! George is shaking his head side to side and forcefully mouthing
"NO WAY!!!"
My thoughts are at Mach 5...."Uh oh....this is not good...George has always taken care of his teeth...what does this mean for his surgery? What does this mean for the cancer? Does that mean there is cancer in his jaw? What does this mean for George? He is so vain!" I'm standing at his bedside, staring at the doctor but not responding to him. He's telling us surgery needs to be day before the big surgery. He wants to know if I understand everything, do I have any questions.....
My daughter steps into the conversation and demands to see the scans. Across the hall is the computer room and, there, right in front of me, I see why removal is the only option. His jaws are full of infection pockets. Some new, some old but all bad. Ooooo...George is about to become really unhappy!!!

Thursday, September 3, 2009

I kiss my husband and wish him luck. I tell him I'm waiting for him but "please," possibly for the last time "tell me you love me - I need to hear you say my name - I need to be able to remember that voice" - just in case.
Six hours of waiting. Waiting for the receptionist to call my name. Waiting to hear what is happening. Six hours is nothing compared to some of my fellow "waiters." A son in critical condition from a car accident; a mom getting a hip replaced. Every person here has a story. Every one's face is creased with worry. We are all in this together, like victims of a disaster - thrown together through tragedy. Our stories are different but our fears and wishes are the same - death, disfigurement, disabilities, hopes, cures, futures.
Finally - they are finished. He's in recovery and awake. I put my head around the corner and am relieved to see he's sitting up, looking good. Then I see the white tube at the base of his throat. They did the tracheotomy. He can't speak. The PEG tube has been inserted.
I see his physician and ask the dreaded question...What did you find?
The tumor is the size of a man's fist. It will definitely require a complete laryngectomy. He's looking to schedule in the next day or two.
Oh Hell.......