Monday, December 28, 2009

I haven't blogged in a few weeks due to the holiday season. With everything going on here and everybody rushing yither and yon I felt it would be better if I waited til after the holidays. It's been an "interesting" few weeks and once I get a chance to take a breath and to reflect I'll begin posting again.
Wishing you all a wonderful New Year. May it be filled with peace, love, joy and friendship.
Huggz to you all my wonderful bogger friends,

Saturday, December 5, 2009

What they don’t tell you….In the beginning you’re not told much - for your own good – too much knowledge would have you all running from the exam room screaming “no bloody way will I let them do that to me!” Once, however, the surgery’s been done and you’re really into the middle of the journey, you would think someone would start to tell you what was happening, what would happen and when to expect these happenings??? Nooooooooo…..they funnel you along from room to room, building to building, treatment area to treatment area, all repeating the same charming lie…all is ok….you look well today….keep your chin up. You’re doing well.
The fatigue is so, so bad the poor man can hardly stand up. The weight loss is quick and beginning to show. The look on friend’s faces when they see him says it all. For a brief second they are aghast. The radiation burns they said would not be too bad at the beginning are currently turning his skin and neck and face black. He looks like a Hiroshima ground zero patient. The ENT nurses are surprised at this. They tell us this is one of the worst cases they have seen. He can’t swallow now so we’re back total tube feedings. His neck is too painful to touch and twice as painful to look at. It reminds me of the molten lava one sees on a National Geographic program; the skin is so black you see the bright red streaks of new, tender yet burnt, skin breaking through the darkness. The office staff looks at him and cringes-the medical staff is doing the same. It’s only the doctors saying how well he’s doing. All but the chemotherapy oncologist who says “oh yeah, it will be back in 18 month-to 2 years. 100% guarantee on that.” Would it be too difficult at this point to tell us what’s around the next bend?
Whatever they are roasting and burning in the throat is also affecting the trachea and lungs. He coughs up “Aliens” – large, strange, burnt, gloppy shapes that seem to want to stay around a bit. Would’ve been nice to know that small tidbit ahead of time. Also knowing the donor site is going to hurt tremendously from waking to sleeping would have made things a wee bit easier. Knowing that we will probably never again be able to go out to a restaurant, a ball game, a formal dinner……yeah – that’s something they could have told us ahead of time.
The disfigurement is so demoralizing. People stare at him wherever he goes. The scars on his neck are like neon signs pointing straight to the gaping hole in his neck. Covering it with a white foam stickey attracts even more attention. Then they see the long patch of grafted skin on his wrist and forearm and the matching scar that runs up his entire arm. The stares are painful and insulting. Those that will speak to him talk to him like he’s mentally deficient and deaf. That only adds to the pain and despair.

He hurts so much. While others patients have become friendly with others sharing their plight, he sits alone. He is so isolated – no one in treatment has had his surgery – there is no one to share treatment stories with and draw support from. He can’t talk; can’t eat and now can’t walk without a cane. Yesterday he had to cough while in the treatment waiting room and was told by the volunteer there to “take that into the bathroom – no one wants to see that.” All he had done was cover his stoma with a handkerchief and cough – the same as anyone else does - but he has to cover his neck instead of his nose or mouth. He is miserable and depressed. He wonders if he should not have had the surgery –if he should stop treatments – if he should just give up.

I wish there was a quick-fix. I would risk life and limb to get it for him, but I know there isn’t. I know this is something he must endure and I am doing my best to make his days easier and soothe his worried mind. I’ve been around emergencies and medical difficulties all my life but nothing has prepared me for this. I keep digging deeper and deeper into myself to find strength and encouragement for him. Please, God, don’t let that well run dry.

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! :-)

Thursday, October 29, 2009

For months now I have been living in two worlds; caregiver and remodeler. Tomorrow my remodel life will end when I make settlement on my Dad's house. My Dad died in December and I have been upgrading and refurbishing the house, dealing with carpenters, contractors and landscapers; making it ready for sale. Now it is ready and I am not.
Walking through the house tonight for the last time is walking through time. The echoes of a lifetime surround me. In every room I hear the childish laughter of my brothers and myself. The kitchen brings to mind the everyday sounds of pots and pans banging, cabinets opening and closing as my mother prepared dinner.
Standing in the living room brings the smell of a freshly cut pine tree and the memories of over a half a century of christmas' past. From my grandmother all the way down to my grandchild, five generations of my family have, at one time or another, called this house home and my mind's eye sees every one of them.
Memories of tree forts, swimming pools, camp-outs and flashlight tag emerge as I roam around the backyard and wander to the edge of the woods. The property is only an acre but my child's eye remembers it as miles long, a place where exploration could last from morning till night.
I have saved the hardest spot for last. The basement was my father's refuge from the world and his place to create. Others have said the heart of a home is the kitchen but here is my heart. I learned my love of woodworking here,watching Dad cut,shape,turn,saw and build. I can hear the saws, smell the wood. I remember the stories he shared of his father, a wonderful woodcarver and also a talented woodworker. My dad and I bonded here--daddy's little girl and her knight in shining armor. This was our place. As he shared his knowledge of wood with me I shared my hopes, dreams, good times and bad times with him.
Sitting on the basement stairs, 4 steps always, I can no longer hold back the tears. It's like saying good-by all over again. I cry for the loss of my father - the first man I ever loved - I cry for the loss of my brother who took his own life less than 3 years ago - I cry for my husband and all he's been through - but mostly I think I cry for me - for everything I've lost - for everything that has been so hard to bear this year.
Life has moved on and I must move on with it. I must dry my tears, take a deep breath and leave this house for the last time. It is just a house now, a new beginning for another family. New carpets, new paint, new appliances all await new loves, new generations, new memories.
I sit in my car and look at the house. The rooms are clean, the porch and front walk is swept, the outside front lights are beckoning a new welcome. I wipe the tears from my face, put my car in gear and drive down the darkened street, away from the past and forward to the future.

Tuesday, October 27, 2009

Well, another day, another waiting room. If nothing else I am learning the ability to just wait. The port insert and skin grafts were done today. I'm waiting to take him home.
This is going to be fun... his arm just received skin from his leg, he has a peg tube in his belly, a hole in his neck and fresh scars from ear to ear. Taking a shower is going to be a herculean effort...thank God for press n seal. I think I'll just start at his feet and wrap until I reach his head or I find the cardboard roll :-)! I'm trying to imagine how we're going to accomplish this....hmmmmmm.
The days have been very hard but they have also been very good. He is trying so hard to put on a brave face that my heart breaks. He still isn't talking and he's so frustrated; but we are finding humor in the silliness that is part of day-to-day life. I am learning more and more how much I really do love this guy and how much he loves me. This is a good thing - we had gotten so used to each other, almost too comfortable. We spent too much time on kids, work, other people and not enough time on each other.

I really wish I could hear him laugh. I miss that...

The man cannot dance - never could - never do the drugs they gave him today make him think he can? I could say the show was worth the wait! Halfway through helping him get dressed he decides he's going to try a reverse striptease while doing the chicken dance!!!! I think this surpasses day-to-day silliness...I want to crawl under the bed! I also cannot stop laughing! Can't wait till tomorrow - just to ask him if he remembers the show he gave the kid in the next bed. That poor, poor boy was all of about 17 and had that "passing the roadside car crash" look on his face - he so wanted to look away from the horror but just couldn't tear his eyes away. Poor kid - he'll probably need years of therapy now!

I'm learning that for every bad day there's a good day; for every pain - a smile; for every fear - joy. I'm learning......

Friday, October 23, 2009

I am amazed at my husband. His strength and courage astound me. The doctors have agreed to do the skin graft and the port at the same time. He has agreed to have them schedule it ASAP so he can get the radiation and chemo started. He says this surgery is "taking the first step out of hell." Wow - I'm not sure I'd be brave enough to return to an OR so quickly. Wow!!! I'm seeing a whole new side to him. Learning something new about someone I've known for so long is definitely an "Ah Ha" moment for me. He's always do I put this?....determined to have his own way and now I finally see a useful purpose for that attribute! He is amazing:-)

Wednesday, October 21, 2009

Through the doorway to Hell

Soft yellow walls and a beautiful light oak reception desk greet patients and visitors. Large, well manicured, healthy, green plants are strategically placed to provide beauty and privacy. A huge tropical fish tank filled with live plants, blue and honey gouramis and vibrant red and gold mollies, doubles as a room divider between the reception area and waiting area. Off to the left is a small alcove offering water, assorted chilled juice bottles and a fresh brewed pot of coffee for patients and their companions. The chairs, too, are oak and are soft, with large comfortable arms for relaxing. Their muted shades of gold, green, brown and blue compliment the walls, the wood and the blue and maroon carpeting. The floor-to-ceiling windows are covered with translucent ivory shades, allowing daylight in but obscuring the hustle and bustle of the city streets. A flat screen television provides distraction. Hmmm, what a nice waiting room.
I settle my husband into a chair and begin the sign-in process at the Cancer Center. We are here meeting with the radiation oncologist and the chemotherapy oncologist to work on plans for George’s radiation and chemotherapy treatments. The receptionist takes all the information she needs, hands me a notebook containing George’s chart and instructs us to take the elevator to the basement, make a quick right through the door and then follow the hallway to the double doors. There, we are told, we will meet the radiation oncology staff.

The elevator doors open at basement level- we make the right as instructed – and walk through the doorway of hell.

I AM STUNNED. I cannot breathe. George is squeezing my hand so hard I’m sure it’s broken. We look at each other, reading each other’s mind...“Oh My God – what are we doing here? This is awful! Surely, this can’t be where we are supposed to be?”
The hallway and alcoves are filled with people in various stages of illness. A small, elderly woman gingerly weaves her way to a treatment room holding onto an IV pole overloaded with clear hanging bags and blue digital machines. IV lines run from the bags to her skeletal arms. Wrapped in a blue hospital gown and shuffling along in yellow “footies” she passes others who mirror her image. Wheelchairs with oxygen bottles hold some of the sickest human beings I have ever seen. There are people with braces, people with total hair loss, partial hair loss, missing limbs. They are so sick. Their skin tones are various shades of green, yellow or grey. Loved ones sit at their sides, holding hands, offering tissues, comfort, hope. I see no one unable to speak – no one with a tell-tale hole in their neck – waiting their turn. Are we really supposed to be here?
We reach the double doors, George gives my hand one last squeeze, and into the labyrinth of Hell we walk…

…And immediately discover the worst is still ahead. Here there are patients on stretchers, patients vomiting, patients moaning. Here is pain, disease, destruction. I feel guilty being healthy.
In a daze, we are ushered to an interior exam room to speak with the oncologists that will be George’s lifeline. We are told he will be given 6 weeks of chemotherapy in conjunction with daily doses of radiation for 38 to 42 days. A special mold of his head, neck and shoulders will be made and this mold will be placed over him each time he has a radiation treatment. The mold will then be bolted to the table so no movement will interfere with the radiation. I am given a booklet, a DVD, instructions on how to treat radiation burns to the skin and am asked if I can bring him back tomorrow afternoon to have the mold made. His face is alive with questions but he cannot vocalize them. He does not like closed in spaces or anything covering his face. I can see the idea of being covered and then bolted to a table is causing him great anxiety. My mind is on spin cycle again -- How sick is he going to be? Can I take care of him when he gets to the stages I just saw in the hall? Is he going to be able to handle this? How am I going to do this without losing my job?

Tomorrow’s appointment is made. Chemotherapy will start before radiation so a port will need to be inserted. Now we have to schedule surgery for the port.

We were told before the first surgery that George will have to have skin grafted from his thigh on to his arm to replace the skin, vessels and veins they took from his arm to make the new esophagus. That surgery is coming up very soon. Maybe…if we are lucky…we can schedule the port and the graft at the same time. I know that will be so much easier on George. If it can’t be scheduled that way he will end up with 5 surgeries in less than 2 months. I don’t think he is emotionally ready to deal with that.

Time to get in touch with the plastic surgeon and see what kind of magic he can work for us…..

Friday, October 16, 2009

Just wanted to give y'all a hello and let you know why I've been away. My computer crashed last week and I thought it was fixed. I was so happy until.....yep, you guessed it - it crashed again! I just got it back from the computer hospital and will be back blogging as soon as I get all my online stuff back in order (hopefully today!!!)

Saturday, October 10, 2009

Did ya' ever notice that you have to leave your own home to get any peace and quiet?
I decided that today was the day! I had had vehicle was sideswiped in a parking lot - ouch, the computer crashed and left me technologically adrift for 4 days, my dad's house is quickly turning into the money pit and my husband was on my last,living nerve soooooo..............
I got in his car, intending to go to the local Dunkin Donuts, and ended up miles from home, standing on a jetty watching little shore birds scamper up to the ocean's edge and then run willy-nilly away from the waves as they crashed upon the sand. I must have stood there for an hour watching those birds, listening to the gulls screaming overhead, feeling the wind, the spray, the serenity of the endlessly rolling sea.
It was the most refreshing, renewing time I've had recently. It lifted my spirits and just gave me such peace. Aaaahhhhhhh....

Monday, October 5, 2009

I am so frustrated I cannot think straight. The man now living in our house is someone I do not know. Rationally, I understand the reasons behind his attitude, rage, and depression, and I do try to be supportive, but, emotionally, there is only so much I can take.
He wants a shower but can't wash himself then he fights me when I give him the help he asked for! He cannot eat at all so I hide in the bathroom to eat something...he just about loses his mind if I try to eat in front of him. He takes pain medication - unscheduled - before I can get him into bed and then I am not strong enough to help this 6'4' man down the hall. He staggers side to side like a drunken sailor or gets half way out of the chair and his knees give out. So far he's plopped back into the chair and not onto the floor. I'm suctioning him 3, 4, 5 times a night. Oh - I know it is all a necessity and, believe me, there is nothing I will not do for this man, but sticking a tube down his windpipe repeatedly and cleaning suction canisters (gag) is doing nothing for my humor and attitude. I actually beat up a box of Press N'Seal in frustration. It was on the table, I was way, way past my frustration limit and...bang, bang, bang, the box connected with the table until pieces of plastic and cardboard were flying across the kitchen and I was left holding just the roll of plastic! I hate to say this but...I did feel better !!!!
By the way - Press N'Seal makes a fantastic wrap for covering casts, bandages and peg tubes. If I wrap and press it around his arm or press it against his belly and then seal it with tape everything stays nice and dry. It works so much better than the plastic bag/baggies everyone uses.
I am also in the process of cleaning out my father's house and getting it ready to sell. My parents lived in that house for 50 some-odd years and, other than what they did as a young couple, nothing's been touched in years. The contractors have carted away 4 full-sized dumpsters of junk and there seems to be no end in sight. There is carpentry work, electrical work, plumbing, landscaping, etc., etc., to be done. I'm running between home, Dad's house and work. Plus, all the things that George took care of while I worked has now been added to the daily routine.
No one explains that there is a price to be paid for being a caregiver. No one seems to know what we do. Almost all of the information we've received is geared to the patient. Somehow the person(s) in the trenches is left out. Where are the pamphlets to show how to suction, when to suction? Where is the book to tell me how to deal with the patient's depression, rage, the struggle to return to normal? Where is the 1-800 number that explains the intricate details of forever squirting saline solution down my loved ones' trachea and the cleaning of the resulting glop that is expelled? Is there a diagram I'm missing on giving injections, scheduling medications, measuring doses?
When do I receive the manual that explains how to help him face the stares from people that see the ear-to-ear scars on his neck and the hole at the base of his collar bones? What do I say to him when people hear him speak with the aid of a prosthesis or the electro-larynx and turn to see where the strange noise is coming from?
There is no way to hide these scars and alterations. There is no shirt sleeve long enough to completely cover the scars at his wrist, no collar high enough to completely hide the neck scars. In fact, some of the items used to help him speak, breathe and/or protect his trachea and lungs, accentuate the surgical results.
It is so very, very hard to watch him cry. To keep a smile on my face, a soothing tone to my voice. He is angry. I am angry. When did I get to the point where I know more than the visiting nurse?
I cannot begin to imagine what is happening inside his head. I can only watch and pray. I wonder if he can imagine what is happening in my head? I cannot do this for him. I cannot make it all better or take it all away. This is his journey but I am finding it is a journey for me also.
What I know will fit in a thimble, what I don't know will fill an ocean.

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.......

Sunday, August 30, 2009

I have not cried this much in my life.
My father died 3 months ago and I was just beginning to hope I was finally through with the waves of grief that crash over me without warning. Now I'm a tidal wave of emotion. I am a mess! I seem to be on automatic as I make all the necessary appointments.
I've told my friends and my children. Thank God the kids are both adults. I am so thankful for their support but also concerned for them. They may be grown, but, to me, they are still young people that need protection. By law George is their step-father, but he is truly their father in every sense of the word.
George has not yet processed any of this. He has that "deer in the headlights" look on his face and is barely speaking to anyone. He was adamant that he not lose his vocal cords and now cannot comprehend that this is exactly what is going to happen.
He has decided not to tell his kids yet. I don't agree with this but am too numb to argue. I'll deal with that later.
So far I've learned about x-rays, cat scans -with and without dyes, ultrasounds, endoscopies, MRA's, MRI's and PET scans. Now I'm discovering the world of biopsies,PEG tubes (a feeding tube that is being put into his stomach), tracheostomies and tracheotomies. The upcoming biopsy surgery will include the insertion of a peg tube and, if the biopsy confirms their diagnosis, a tracheostomy will be performed in preparation for the radical neck dissection and total laryngectomy. WHAT????? Radical??? Total????
I understand the medical terms but still cannot completely grasp that these words pertain to my husband.

Friday, August 28, 2009

Laryngeal cancer.....did I just hear correctly? C-a-n-c-e-r??? What is he, ???? Is he kidding; some kind of scare tactic? That must be it. He's trying to scare George into taking better care of himself.
The sound of the surgeon's voice becomes background noise for my own thoughts: How? When? W-H-Y? Why him? Why us? Why now?
The words 'immediate surgery' force me back into focus.
The doctor is explaining that stage 3 cancer of this size and in this area is best treated by complete removal of the voice box along with 6-8 weeks of radiation and chemotherapy. Today is Monday. He will do a final biopsy and p.e.g. insertion(whatever that is) before the removal. Be prepared for a 14-21 day hospital stay. Be at the hospital by 6:30 am on Friday. Before then there are all kinds of pre-operation tests and studies to be done. We have 4 days to get them scheduled, completed and get the results back to the surgeon. I know he's telling us more but I cannot comprehend it all. We nod politely, thank the doctor for his time and tell him we'll see him bright and early Friday. As the three of us stand at the receptionist's desk smiling and nodding, like friends scheduling a lunch date, I start to think ahead to what needs to be done.
I'm working full-time - how do we arrange for all of this? What do I tell our kids, our families, my boss?

Tuesday, August 25, 2009

And so it begins

The envelope sat in my lap, silently demanding to be opened. My husband of 18 years sat beside me, his blue eyes filled with the apprehension that not knowing brings. As the grey skies unhinged a torrent of rain, lightening and thunder - the first such storm of the spring - I opened the letter that would change our lives forever.