I repeat, don’t forget to get your mammogram.

Every year!

I am probably preaching to the choir.  Well, I hope I am and I hope no one needs to be reminded or coaxed.

There have been so many illnesses in my family history, but never a history of breast cancer …until  two months ago when my sister Toni was diagnosed with breast cancer!  A tumor was discovered in her right breast from her routine annual mammogram!

It still seems surreal to write this about my sister, Toni.  I have hesitated to blog about her situation as this is very painful to write. Toni was diagnosed with Triple Negative Estrogen Progesterone breast cancer.  The cancer is also in her lymph nodes.  It is a type that has a high recurrence rate.   It may be stress driven, but it is definitely not hormone driven.

What is most disturbing for me, and those of us who love Toni, is that Toni is developmentally disabled.  It seems ridiculously unfair that she has to experience this!  How is she to endure these four chemo treatments,  a mastectomy followed by  more chemo, and radiation?

Her life has been far from easy.  She had a high fever when she was 2 years old and the fever left her with severe brain damage.  She cannot read or write, has a strong speech impediment,  needs a lot of guidance, and cannot live independently.  She lived with my parents her whole life until two and a half years ago when my mom died (dad died 12 months earlier). Toni was 55 years old at the time of mom’s death.  Losing my parents was a huge blow to Toni’s world.  They were her world!  They were her caretakers, protectors, guides, parents, and best friends.

When mom died, we sold the house in Crown Point, Indiana where Toni had lived for so many years. Not having the ability to express herself, one can only imagine the stress she underwent with all the changes.  After our parents were gone, we all took turns taking care of her four months at a time, but still the emotional pain and stress remained for Toni.  I suspect these past two years of sadness, grief, and stress brought on the cancer.  On a brighter note, she will be getting counseling soon to help deal with her unexpressed grief and to have an outlet with a trained professional to express herself!

I went to Indiana over Christmas, mostly to help take care of Toni.  It was a really nice week  because I got to see my family, but also tough to see Toni feeling so ill from her second chemo treatment.  I am going to include some descriptions of my time in Indiana:

While I was there, I helped Toni write thank you cards.  It was hard to know which gift came from which person because Toni had stacked all the cards in one place and the gifts in another!  She drew some pictures on the thank you cards and I asked her if she would like to “write” something and she said, “Thank you…and…I love you!  Toni”.  So I wrote those words out for her and she painstakingly copied out the words on her cards!

I am very touched by the outpouring of love towards Toni!  I think Toni has a lot of support, even through my friends who have been fantastic by sending her cards and gifts, their prayers and positive thoughts.  One of my friends gave her an acupressure mat which is great for the immune system.  I bought a visualization cd for her with positive affirmations.  With it, Toni can imagine that the chemo is something like white light entering the body, healing, promoting all the good inside… And other friends have given me their words of wisdom, advice, and ideas to help Toni.

Toni is very childlike, pure, and innocent.  These qualities are blessings in that she is in the NOW.  It also pains me to see her in discomfort, tired, and nauseous, because she doesn’t really understand what’s going on.

We visited Aunt Lily on Christmas Eve.  We made split pea soup and brought it over to her.  I phoned her and told her we’d bring lunch over so that she didn’t have to do any work, so that we could just hang out and relax since she is recovering from a recent surgery.  On the way there, Toni became nauseous and needed to vomit.  In a panic, I emptied out one of the Christmas gift bags for Aunt Lily (sorry Nora!! but better than the alternative) and gave it to Toni so she could hold it to her face.  Nora turned up the Christmas tunes on the car radio.  “It’s beginning to look a lot like Christmas” was playing.  In between dry heaves, Toni sang along. Bless her heart!  Nora and I vowed right then and there to play all of Toni’s favorite Christmas songs all year long if that is what it takes to keep Toni’s mind off the ill effects of cancer!

I stared out at the snow drifts along the sides of the road.  When we got to Aunt Lily’s, surpriiiiise…she completely ignored our request that she not cook and she had a feast waiting for us!  She made ricotta stuffed ravioli with a delicious tomato sauce.  Nora eats like a bird.  Toni was feeling nauseous. But me? I devoured those ravioli!   Aunt Lily watched me with an ear to ear grin as I ate with GUSTO.  Every chef’s dream is to have a hearty eater like me at his/her table!

We love spending time with Aunt Lily. She is so much like my dad. She has the same expressions as he had.  Despite a hard life of having been widowed twice, having lost a child late in pregnancy and never being able to have children again, she can still laugh!  She has a way of laughing like my dad.  Her shoulders convulse and her whole body shakes with laughter.  My lovely, lovely aunty (and Godmother!!)!

Toni greeted Aunt Lily by doffing her wig as if it were a hat, saying, “Look Aunt Lily, I no got no hair no more!”  Aunt Lily hardly expected Toni to pull the wig off to show her head which looks like a newborn baby chick’s.  Before my aunt could react with shock, Toni put the wig back on, backwards, which, thankfully, made us all laugh.

Soon, Toni is crying. She feels sick again. She says, “I can’t stand this!”  Aunt Lily happens to have Ginger Ale.  Never mind if it’s all sugar!  It does the trick and somewhat calms Toni’s stomach.

We had a great visit with Aunt Lily, even though Toni was feeling nauseous. As we were getting ready to leave, Aunt Lily disappeared and reappeared with a huge bottle of wine for Nora. I silently wondered if the wine was from one of her deceased husbands’ homemade stash?  My mom used to say, “My God, how much of that wine could she still have left?”  I worried that Toni, who has no filters, would innocently blurt out something like, “We no like that wine!”, but she says nothing.  I whispered to Nora, “Maybe you can use it as vinegar.”

Back in the car, Toni started in on Santa, who is very, very real to her.

“I dance with Him yesterday!”

“Who?”

“Santa!  At Day Care!  We dance.  Me and Santa.  We had GOOD time.

Above photo Christmas Day: niece Angela, Nora, Toni, ravioli-stuffed Fran and Jeanie (seated). Sis  Zina missing from photo.

December 28 was the roughest day of my stay.  Toni was up all night (the 27th) vomiting and was nauseous all day. I tended to her most of the night.  Her nurse made her stay home on the 28th. That meant NO DAY CARE!  Toni was devastated.  She lives for Day Care where she is coddled and hugged all day long, where she sings and dances, where she is the STAR!  Toni was mad at me, in a strange way blamed me for her illness and for having to stay home, and made me her punching bag for the day. I was sleep-deprived which made the situation worse.  I took heaps of abuse from her, was on the verge of tears a few times, and really tried my best to understand her pain and her lashing out at me.  But hey, she’s smart!  Why not lash out at me?  My love is unconditional. She knows I will never walk away.  After one of the roughest days, I tucked Toni into bed, and, to my surprise, she hugged me and said,

“I glad you here.  You my medicine.”

What more can I say?  I am glad I was there, too.  I would not have spent my Christmas any other way.

Above photo:  me surrounded by LOVE!!  These are 4 of sis Nora’s 5 grandchildren!