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 up...like 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.

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 will...so...why 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......

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 been...how do I put this?....determined to have his own way and now I finally see a useful purpose for that attribute! He is amazing:-)

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…..

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!!!)

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 it...my 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....

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.