I don’t like 2013. 2012 was great!

20121008-073545.jpgMeet and Greet. J steals FSword20121114-095320.jpg

I stare at the new Family Calendar. The fresh year reveals its untouched surface. I have yet to update it with the family’s schedules. In my left hand are the school calendar and therapy schedules; in my right is the Sharpie marker to fill it all in. An overwhelming feeling washes over me. I am in denial. I do not want to begin a new year.
2012 was such an emotionally hard and great year rolled into a batch of twelve months. It started with our youngest daughter beginning speech and ABA therapies to help her with her delays and autism tendencies. She has done so well. We are so proud of her at every step of the way. Our oldest finished full-day kindergarten and began Grade 1. Her academic skills still surprises me as she reads a level up.
The year also marked a difficult one. The year I turned older than my mother lived. Some worry about turning 40, where I looked forward to it. The guilt of why did I get to live and she didn’t visits me frequently.
So on Thanksgiving Weekend I walked into our house to a surprise party. The people that took the time to celebrate with me still make me smile with gratitude. You can read about it more here.
Shortly after mine and my youngest daughter’s birthdays, we had the honor of meeting her rock stars, The Wiggles. She still holds the special feathersword with care.
In November, my husband and I marked our 20 year wedding anniversary by going on a rare date. It felt so good to get out without the kids and just hang out. We have been together for almost 23 years and he is still my best friend. I love that our girls see it every day. It is not easy sometimes, especially since we became parents later in our relationship. Having said that, I am very proud of us on how far we have come.
December arrived with our youngest needing her tonsils and adenoids out. The time in the hospital with her was awful. With her sensory and social challenges, I am grateful that the nurses finally listened to me to make her visit tolerable for her (and others). We were so happy to be home. Then, the cold bugs hit along with molars cutting. We didn’t feel like celebrating Christmas. The kids always motivate us to jump out of our comfort zone.
The biggest reason why I am anxious about 2013 is that our youngest will be registered for kindergarten. After over a year of therapy, I second-guess myself if she is even ready for it. She loves pre-school and her workers that come to the house. I worry if we should hold her back or would it harm her socially. The one thing that helps is that her sister would be there in the same school. A school the two have them have come to know over the past few years.
With a heavy sigh, I start to update the calendar. When January is done, I take a step back. Then it hits me, is it just me that is not ready for my girls to grow up?

Thank you CIBC and #TeamYMC

This past Sunday I had the opportunity to walk in the CIBC Run for a Cure with my whole family and new friends.
If you are new to my blog, feel free to read more about my story. I would like to share some pics from this wonderful morning.

20120930-154442.jpg

20120930-154454.jpg

20120930-154519.jpg

20120930-154537.jpg

20120930-154547.jpg
Thank you #TeamYMC!
Thank you to those who donate time and/or money to find a cure. It can happen in my daughters lifetime.

CIBC Run for the Cure Works!

In 1998 I got the call that stopped my world, my young sister has cancer. After all the losses we have had in our family, this one ripped my heart out. Ever since our mom died when we were kids the word CANCER loomed above our shoulders. As the oldest sibling I was convinced it would be me next. Biology had another idea.

After a year of sleepless nights, chemo and many, many appointments she was clear! The relief was impalpable. So in 1999 I became more aware of my own health. I also wanted to find a way to give back to the universe. To have my best girlfriend alive and well filled my days with gratitude.

One day I was in the CIBC bank for work. I spied a brochure for the CIBC Run for The Cure. Immediately I knew what I had to do. I registered and began fundraising. I traveled alone on the sky train full of emotion, when I saw the other women and kids wearing the Run shirt and clearly going to the same stop as I was. When I got to the Start line the tears fell fast. I was overwhelmed with the feeling that I was not alone. Cancer has affected a lot of people.

I dared myself to do the 5K. It took me a long time between walking and running. I saw the finish line and sprinted to it. As I crossed there were cheers. I thought that was odd. I did not know anyone here. This community of Cancer Warriors is warm and accepting. We are all here for a reason.

Years passed and my husband, sister and her husband joined me. I was honored and proud of the money we raised to help more families like ours. The motivation is that what if the next dollar raised helps to cure the evil disease. The answer is no one knows. We do need to find a cure so families can stop losing loved ones.

When I became a mom the desire for my girls to not have the same fate of losing a mom too soon made me bring them along to the runs. With the stroller we can walk/run, and this year we have joined a team. Please consider giving up one coffee and donate. You never know if the next dollar can save your family.

Thank you.

This year I have the pleasure joining the wonderful Yummy Mummy Club team with my family on September 30th, 2012 . #TeamYMC.  Please donate here. Thank you.

An Angry Letter to my Mom

Dear Mom,

I am so sad, mad and upset at you.

After years of being scared to have kids, in fear of them inheriting genetic baggage, my deepest fear has come true. Since my youngest daughter was born, her delays have been obvious. Then the diagnosis of Autism arrived. All this time I have been riddled with the guilt that I am at fault for her delays and diagnosis.  I have second guessed everything that happened from the morning sickness to having to be put out for her birth.

Then earlier this year my sister, your youngest, was found to have a rare chromosome that was linked to her cancers. Because of that, my baby and I have been tested due to that connection.  Today I got the call that we tested positive with links to my health problems, and my sweet baby who has autism and a big head. All this time I blamed myself that it was my fault for her social and development delays.

All her and I did was be born. It does not ease my pain that it might not be my fault. She inherited from me, and I from you. We were born. End of story. I know that if you were here today we would find out if you had the same mutation of the gene. Statistically it had to be from you. But who did you get it from? I have a million questions for you. Life has thrown my small family too many curveballs. Why are we the ones with the genetic baggage, and not the rest of the family?

It is so not fair. Cancer is a bitch.  I can never imagine life without both my babies. Autism has had its hard days. It has given us moments that remind us with what is really important.

Family.

I wish you were here.

Love, Me

The Waiting Is Not a Game

As a kid you wait for the Tooth Fairy and Santa Claus. As a teenager you wait for the school bell and to grow up. As an adult you wait for the promotion and Fridays. A soon-to-be parent waits for the stick to turn blue and to teach their child to tie their shoe. As a parent you wait for the sleeping nights and for your kids to be safe.

As a big sister, I wait day after day for my sister’s results to come back. We wait for her to be healthy again. We wait for the cancer to go away for good this time. She waits for what was normal once before. This is the blemished reality of more tests, more waiting and more surgeries.

Whoever said the expression ‘waiting game’ must have been kidding. The agonizing waiting eats away at our daily lives. The unknown plagues our hearts. To be in limbo stalls the ability to move forward, lighter and better.

Well let’s just face it, waiting sucks!

My Sister’s Other Cancer Attacker

Medical Details of my Sister’s Attacker. For What Its Worth

Intraductal carcinoma is a condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, intraductal carcinoma may become invasive cancer and spread to other tissues, although it is not known at this time how to predict which lesions will become invasive. Also called ductal carcinoma in situ (DCIS).

Causes

The specific causes of intraductal carcinoma are still unknown. The risk factors for developing this condition are similar to those for invasive breast cancer.

Some women are however more prone than others to developing intraductal carcinoma. Women considered at higher risks are those who have a family history of breast cancer, those who have had their periods at an early age or who have had a late menopause. Also, women who have never had children or had them late in life are also more likely to get this condition.

Genetic mutations (BRCA1 or BRCA2 genes), atypical hyperplasia, as well as radiation exposure or exposure to certain chemicals may also contribute in the development of the condition. Nonetheless, the risk of developing noninvasive cancer increases with age and it is higher in women older than 45 years.

Treatment

The main treatment for intraductal carcinoma used to be mastectomy. This treatment therapy consists in the removal of the affected breast and until recently it was the only way in which this condition was treated. The rationale for mastectomy includes a 30% incidence of multicentric disease, a 40% prevalence of residual tumor at mastectomy following wide excision alone, and a 25% to 50% incidence of breast recurrence following limited surgery for palpable tumor, with 50% of those recurrences being invasive carcinoma.

Another treatment option consists of breast-conserving surgery along with radiation therapy. This type of treatment is usually considered in patients with non-palpable lesions and microcalcifications that may be seen on a mammography Breast-conserving surgery, also referred to as lumpectomy, is considered nowadays a reasonable approach in the treatment of intraductal carcinoma. A lumpectomy consists in the removal of the tumor and a part of the surrounding tissues of the breast. Sometimes, lumpectomies are also referred to as partial mastectomies because they mainly consist in the removal of a part of the breast tissue. My sister has already had 5 lumps removed.

According to the results of the trials carried out by EORTC (EORTC-10853), radiation therapy has a consistent efficiency in treating intraductal carcinoma. This clinical trial showed that the recurrence rate of breast carcinoma may be reduced with 10%, from which invasive cancer recurrence was reduced with 5% and noninvasive cancer recurrence with 7%. This study also concluded that the risks of recurrence are greatly dependent on the age of the patient, the type of carcinoma (intermediate or poorly differentiated), the indeterminate margins of the tumor and the growth pattern.

Mastectomies however remain the main treatment option in patients with persistent microscopic involvement of margins after local excision or with a diagnosis of intraductal carcinoma and evidence of suspicious, diffuse micro calcifications.

A clinical study carried out by NSABP revealed that Taximofen may reduce the incidence of contralateral breast neoplasms (invasive and noninvasive) from 0.8% per year to 0.4% per year and the ipsilateral invasive breast cancer with 2% at 5 years.

Chemotherapy is thought to be inefficient in treating this type of noninvasive breast cancer and the role of hormonal therapy in this matter is currently being researched.

My Sister’s Genetic Attacker

What is germ cell cancer?

Germ cells are the cells in the body that develop into sperm and eggs. They are mainly found in the ovary or testicle. But they can sometimes be left behind in other parts of the body from when you developed in the womb.

Germ cell tumours can develop from these cells. They most often develop in the ovary or testicle, as that is where most germ cells are. But they can develop anywhere there are germ cells. The most common germ cell tumors are teratomas or seminomas of the testicle in men.

Women can develop ovarian germ cell tumors. Many of these are non-cancerous (benign). But some are cancerous. Only about 1 or 2% of cancers of the ovary are this type. Most ovarian germ cell tumors occur in teenagers or young women, although they also occur in women in their 60’s.

Cancers that develop from germ cells in other parts of the body are rare. They may grow in a part of the chest called the mediastinum. The mediastinum is the area between the lungs, which contains the heart. Germ cell cancers may also start in the brain, or at the back of the abdomen. This is called retroperitoneal cancer (which just means behind the abdomen).  

Doctors usually remove germ cell cancers with surgery and this may be all the treatment you need if the cancer is small and easy to remove. If there is a chance of the cancer coming back, you may have chemotherapy after surgery. Germ cell tumors generally respond very well to chemotherapy and most people are cured. Even cancers that have spread are still very treatable.

Are we fighting a losing battle or winning soon?

My Sister’s Attacker

As soon as I hit end call on my iPhone my tears poured   down my face like it was in a race. My nose began to drip. My heart feels ripped in half. My grief rushes through my whole body like salt in an open wound. Here we go again.

It is the night before my 34 year old younger sister will go through a full mastectomy. Due to cells in her lymph nodes, our family history and her prior battles with cancer, this surgery is necessary. There are no other options to kick cancer.

The reason why she has no other choice is two germ cell tumors removed from her. One from 14 years ago and one 2 ½ months ago. And once again like a broken record the powerful dejavu clouds my soul.

Sitting by my sister’s hospital bedside year after year gives my empathy to what my aunts felt holding vigil by our mom’s hospital bed. Our mom lost her second battle with cancer at the age of 38.

I poured through the internet looking for answers on the type of cancer.

This post is to be continued.

Why I haven’t blogged this week

 As many of you know, my sister has been going through the unthinkable again. She had a major surgery the week before Christmas. She has spent the last couple of months recuperating.

One week ago, she went for a full-body scan to see where the cancer cells might still reside. For the past week we were antsy and dreamed of the magic call that all is clear. I tweeted it and facebooked it. There were a lot of prayers and positive thoughts sent our way.

Then the call came. She is not all clear. There are more tests and more waiting for results.

I tried for days to get back to regular writing. Every time the cursor flashed at me I couldn’t fill its time with warm and fantastic writing for you to read. 

Truth is I am scared. All my life since our mom died at the age of 38, I was scared to turn that age. This is the year I turn 38. All this time, I was scared to have the same fate as my mom. And it is my sister going through hell because of genetics.

Germ cells are not acquired due to lifestyles but genetics. She was born with them to no fault of her own.

This big sister feels helpless all over again. I can’t fix this by researching and getting her the treatment to cure her forever. No money in the world will fix this. She is in great medical care possible.

My dear readers, I thank you for your patience and support. I started this blog to try to write about being a motherless mother.  It hits too close to home that my only family outside my house is having to go through this all over again.

Déjà vu.

I ask for you to do one thing: hug your loved ones tight. Don’t sweat the small stuff.  You never know the last time you said ‘I love you’ is truly the last time.

I am sorry for any rough grammar errors. Thank you for understanding.

Sistering through Motherhood

It is the Monday before Christmas, I am sitting in a dim lit room. The only light is from the hallway.The machine is beeping its presence beside her bed. The muffled sounds of pages on the loud speakers. The stinging smell of the recently clean floor is finally dissipating. My eyes travel up from the tubes that are snaked under the crisp sheets. I stare at my sleeping sister as she breaths slowly. My heart pounds harder than ever in fear and love.

My sister just came from the recovery room after having a tumor removed. The initial talk is that her cancer might be back. There will be a lot more tests and results to pain stakingly wait for. All I can feel is the powerful déjà vu that takes over my soul-Here we go again. I smooth her sheets and refill her water cup. I refresh the wet washcloth that is kept near to cool her face. Unlike last time, she now has a loving husband who treats her as his queen, and I have young children.

I feel so guilty today. I tried to be a mom to my kids, with an eye on the clock for when my husband will come home, so I can run to the hospital. Outside of my household, my sister is the only family I have. If it were not for the kids, we would post-pone Christmas. It is not the same celebration without her.

 As I watch her chest rise and fall, I am grateful that she made it through the surgery so I can be here with her. Her eyes open and peer at me. She smiles through her drug haze. She says how glad she is that I am here. My heart strings tug with full might. Her eyes close again, this time a hand grasping mine. I see the irony just now. I always feel like a mom who doesn’t know what she is doing. All my years of being a big sister proved to be training for this moment, to care for all my loved ones. I exhale a sigh of relief. I know my kids are fine at home with their daddy. I am right where I should be.