BLOG: Battling Breast Cancer: Sore Throats and Eulogies
The biggest pain about getting the radiation treatment wasn't the treatment itself - it was getting to Sloan-Kettering every day in the middle of the day.
I couldn't get much accomplished in the mornings before I had to leave, I had to drive around and around looking for parking - unless I wanted to pay $20 each day for the privilege in one of the numerous lots around the area, and by the time I got through traffic to get home - most of the day had gone.
After my mother died - my feelings about the daily radiation changed.
I was glad to be doing something - anything to get my mind off the death for a while.
Once again, I had been lucky in side effects. My skin around the breast area was getting red - but it only looked like I had been out in the sun a little too long - it wasn't burned black like I had feared.
The side of chest and the opposite side of my collarbone became itchy - and of course I couldn't stop scratching. Dr. Ho said my skin did seem dry and recommended various creams I should use to keep the skin moist, reduce the redness and the itching. So I picked up some Lubriderm cream and applied it - I had to do this twice a day - and the first one had to be either at least 4 hours prior to my treatment or after the treatment. I've been doing just that and it seems to have kept the skin moist - but the itchiness keeps driving me crazy.
I also had developed a sore throat - which at times made swallowing difficult but not impossible.
Dr. Ho prescribed what everyone at Sloan calls "Magic Mouthwash" - it was a combination of Lidocaine, Maalox, and an anthihistine - diphenhydramine. It tastes like chaulk, but I'm just supposed to swish it around my mouth and spit it out. The problem is is winds up making my tongue numb - so talking becomes weird.
However, one of the other patients and I were discussing this - and we figured out if I throw my head back real fast, and gargle with the stuff, getting it in the back of my throat, the lidocaine gets to do it's job numbing the throat - and the sore throat doesn't bother me. I do still have to spit it out, which is a pleasure.
The final side effect I've had has to do with the radiation itself. It winds up tightening the skin up. Therefore, the scar tissue from the mastectomy is tightening, and when I move my arm it pulls at the movement. The same thing happened after the surgery back in February. Dr. Ho and her nurses have told me to re-do the exercises that I did after the surgery, and the pulling should subside. For the most part it has with the arm swings and crawling my fingers up a wall while I stand next to the wall. However, every now and then I still get a shot of pain, mostly minor, although while driving home one day from treatment - I felt a full-blown shot from the incision area. Dr. Ho said not to worry about that - that happens all the time and should go away when the radiation treatment ends.
Again, each day when I go in to get the radiation treatment, they ask me if that's my name and picture on the computer screen mounted on the wall of the room. I usually say "Yes that's me without the eyebrows' The picture was taken of me during the simulation back in August - when my hair was just starting to grow back - but my eyebrows had disappeared - (See picture posted here.)
A few things I've learned about the treatment: the "platter" I described last time that has the "flat nails" on them that focus the radiation beams - is mounted on a gantry that pivots around me while I'm lying on top of the "table top". I'm getting fourteen beams of radiation instead of the usual two - and the fourteen are each less powerful and more accurate than the two beam method.
The infrared cameras mounted on the ceiling on either side of the machine - are taking a single infrared image of me - that the technicians use to set me up in the exact same position each day for the treatment. By comparing the image they take with the original image from the simulation - the computer tells them if I'm in the right spot. It also tells them what parts of my body to move to get me in exactly the right spot. At various times, they've pulled my arm to move it higher, they've shifted the sheet under me to slide my body left or right on the table. All this to line up the various tattoos on my body - which they highlight with sharpie markers each day - to hit the exact spot.
Dealing with all of this has kept my mind off my mother's death - but I had to deal with her wake and funeral. I hadn't known the last names of many of her friends and neighbors, nor did I have any numbers. So I knocked on one of her neighbors' doors, and then found another's number and called her up to inform them of my mother's passing. They expressed their condolences and said they'd pass the word along. I also had to call other family members - cousins mostly - to let them know, and of course her best friend who lived in Germany. They had met here in America after WWII and stayed friends for more than fifty years - exchanging gifts, cards, letters and audio cassette tapes.
At the wake, the loss didn't hit me. I guess that's because many of her friends and neighbors came, as did many relatives - and just talking to others helped me cope at that moment - but the next day at the funeral - it hit me hard.
My mother, and my father too, had pre-paid and pre-arranged their funerals. They had the plot picked out, the stone cut and even had picked the music for the ceremony. My mother had picked out two songs -- Ave Maria and Amazing Grace.
My young nieces and nephews wrote some notes to their Grandma and placed them on her chest at the wake. I had asked the florist to include carnations in one of the sprays of flowers my brothers and I had gotten. You see my father every mothers day, even the year he died, got a corsage for my mother and 4 carnations - one for himself and one for each of his sons. This was even after we had long gone from the house - moved out, gotten married, and had kids. My brother thought it would be nice to include 4 carnations in the coffin with the notes, so I helped him do that the morning of the funeral Then I told him the notes had given me an idea - I'd feel like putting a sketch pad and pencil in the coffin - since Mom always had one wherever she went. - but I felt a little strange about doing that. He told me to go ahead if I felt like it so I did.
Then we went into the church behind her coffin and Ave Maria was being sung by the singer my mother had asked for - that's when the tears came for me - and hardly stopped that morning.
Both my brothers and I said a eulogy about my mother. Anthony remembered things Mom had done - like showing him how to sew on a button - because she told him "one day you might need to do this".
John spoke of Mom's religion and her lasting friendships. I spoke about Mom as whole person she was - here's my eulogy. We all broke down during our readings - I at the very end of mine:
"Devoted wife, beloved mother, grandmother and great-grandmother - Mom was much more than that. Add sketch artist, painter, gardener, plumber, voracious reader, and good friend - and you get closer to describing who Mom was.
Mom adored Dad. From the first moment that they were introduced when they realized they both shared a mutual love of photography - to the moment he died four years ago tomorrow. The last few years of his life she put hers on hold to take care of him - even though her own health wasn't great.
Mom loved her children and grandchildren and great-grandchildren. She would carry a brag book around with her and show her friends and neighbors how proud she was of them by discussing in detail all of their latest accomplishments.
Mom loved faces. She would go up to a stranger on the street and tell them they had a unique face. She would stare at people - sometimes making them uncomfortable - because their face interested her. She always had her sketchbook with her - to put down on paper what she saw on those faces.
Mom would sometimes draw a person younger than they were - being able to strip away the years and see how that face used to look. If someone complained that that's not exactly what the subject looked like today - she would tell them she was taught to always flatter your subject. So the woman with three chins wound up with one.
Despite minimal training, Mom became so good at painting that she would be commissioned to do portraits for people - but wouldn't take any money for her work - because she just loved to paint.
For all of us who have one of her paintings or sketches she will always be alive - because her art is hanging in our homes.
Mom was very proud of her garden - making it beautiful and regretting that her scoliosis prevented her from keeping it that way. A testament to her work is her crocuses which continue to bloom every spring - despite Dad digging them up thinking they were dead roots.
With Dad working odd hours, Mom was left to do repairs in the house, sometimes fixing the toilets with epoxy or fixing cracks in the ceilings with duct tape.
She and Dad loved books. Mom loved books about the history of Italy and Germany and of course art - her favorite artist was Michelangelo.
For the short time that Mom stayed at our apartment - she watched a program about Michelangelo's statue David and loved it. And then there was the time I brought Mom to a preview of the opening of an exhibit of Michelangelo's. Mom knew so much about the artist, the exhibit guide thought she should guide the tour.
She also had very heated discussions with her circle of friends about history, citing what she had just read.
And for a friend, no one could beat Mom. To her nieces she was more like a big sister, talking about life, going to museums, and constantly staying in touch on the phone.
From thousands of miles away - Mom would stay in touch with her best friend in Germany - Helene. For fifty years they exchanged Christmas gifts, cards, letters, tape recordings and phone calls - each knowing exactly what the other meant despite language problems - Mom spoke no German and Helene's English sometimes failed her.
Mom was also the neighbor we'd all love to have, from shoveling snow off your sidewalk to picking up something that you forgot to get from the store to checking on sick people and helping them in whatever way she could.
Finally, Mom was one of the most prophetic people I've ever met. While looking for pictures in her home to be used at her wake, I saw a Barnes and Noble shopping bag hanging over the back of one of her kitchen chairs, I wanted to place the pictures in the shopping bag so I removed the contents - one other bag with a wrapped present in it. It was addressed to me - and there was a card inside as well - let me quote from the card "Everywhere you journey in life, you will go with my love by your side, forever it will be with you. Truly, joyfully, and more meant to be than words could ever say. You are the joy of my life, the source of my dearest memories, the inspiration for my fondest wishes and the sweetest present life could ever give to anyone. I'll always love you Son with all my heart and I couldn't be more proud of you if I tried."
And I know she felt the same way about ALL her children, grandchildren, and great-grandchildren.
My mother died a week shy of the fourth anniversary or my father's death.
I wonder if she was holding out to get to that date - or if she finally let go because of me. She knew before her fall in January of my cancer, saw me lose my hair to the chemo (she was very aware of what was happening) and finally saw my hair and eyebrows grow back as well as my coloring come back.
I wonder if knowing I was through the worst of the treatment she decided she could leave me to recover on my own. I'll never know.
Phil Pilato is an editor at 1010 WINS radio and a Councilmember of the Writers Guild East. In December of 2009 he was diagnosed with Stage Two Breast Cancer, rare in men. He decided to try to help other people better deal with the disease by blogging about his own experiences.
