“My Voice” by Aalia Bleibel

Aalia Bleibel - 'Survivor'

My grandmother was this amazing woman that worked, cooked dinner for my grandfather daily, and maintained an immaculately clean home. There were no acceptable excuses for not performing these duties as a wife and a mother.  I did not see her raise her children of course, but I have family photos of my mother and her five brothers and sister all perfectly dressed and groomed, and my grandmother was this ever beautiful and sophisticated woman who took pride in herself and her home.  I even heard a story where she walked to the hospital when in labor with her fourth child after dropping off her then three children with her mother-in-law.  This is how I was raised that a woman is expected to be…superwoman.

But I am not superwoman, at least not quite.  I am waging a war against early stage esophageal cancer by method of Immunotherapy (IL2), since July 2009 and have a good prognosis.  I was also diagnosed with early stage cervical cancer, originally in 2008, and was HPV negative, meaning I was a “rare bird” and little explanation as to why I developed this form of cancer.  As of the most recent scans and labs, the cervical cancer is not currently active, which is a great relief! One down…one to go..

I have three beautiful children and although I may not do everything perfectly, I do manage to get dinner on the table most nights, pick up the house as I can, play with my children, groom my children, manage straight A’s while attending online school to obtain my law degree, work, and help my husband in any way that I can.  I do this on uneventful days and days after my two hour oncology appointment where I receive my immunotherapy injections, plus labs or orders for scans, mental and physical stress that all of this puts onto me, and let’s not forget wonderful traffic to and from the hospital.  This I do this all as best I can.

My biggest battle is not having the energy to do all the wonderful things I feel I should be able to do.  When I struggle with the energy to finish the laundry or walk up the stairs in my house to give my children a bath this is the part I get most frustrated about.  I push myself at times more than others times just to show cancer that is cannot take everything from me.  Then again some days, I can hardly manage to get out of bed.  Along with the cancer I have two active autoimmune diseases that are in major action tormenting my body, one of which is attacking the moisture and salivary glands in my body, Sjogrens Syndrome.  I try not to focus on the fact that these diseases diminish quality of life over time.  I try not to think about what cancer might do to my body one day…and focus on today.

I have been through my own gamut of procedures, tests, financial struggle due to the cost of battling cancer, but all of these things seem miniscule when I wake up each day and find my energy to begin it fresh.  I have a post it note that rotates from my bathroom mirror to the front of my refrigerator that says, “I want to breathe, I want to feel, I want to love, I want to watch my kids grow up, I want to LIVE!”  I speak of this post it often because every time I see it..every time I look at it..I remind myself to concentrate on what is most important to me in my life and not allow negativity in my life.

I will not allow anything in my life that tries to compromise what my goal is..to LIVE.  I also often say, “If you are not going to be a part of the solution, then don’t be a part of the problem!”  I say this because I have come to learn that stress and depression make life by itself an awful experience, and if one’s body is compromised by this ugly disease then one must stay far away from it..and I mean as far away as possible!  So I smile often, I laugh and act goofy, I stopped being afraid to love people in my life or letting them know that I love them, and I fight harder for a good life than I ever have before.  Because now, I am just not fighting to fight, but ultimately for my life and to be in my children’s lives long enough to watch them grow up, get married and have their own children.

There are times when the fear can be so overwhelming that it just brings me to tears.  The frustration as well can be quite difficult.  I cannot count the times that I have just broken down into tears from the numerous emotions ranging from gratefulness to exhaustion.  Being a survivor in my home means understanding that as much as my husband might love me, he could never understand or feel what it is that I go through daily.  I cannot blame him or resent him for this, nor anyone who looks at me and forgets that I have cancer and inside I hold a box full of something deep and special to share.

My world goes on despite that fact that I have cancer.  My children, who are almost 3, 5, and 13 years old expect from Mommy to be that person who will take them potty, give them baths, give them hugs and kisses repeatedly, and listen to all the day’s exciting events in school.  Life doesn’t stop for cancer and this is especially true if you have children to care for or not.  I am not sure what my future holds and as much as I would like to purchase my own CT scan machine so I can move it into my bedroom and know daily EXACTLY what is going on in my body, I cannot.

Instead, I will look for the opportunities to make each day special and find reasons to smile and I can say that my husband and children give me plenty of reasons to smile and laugh.  The friends and network of support that I have are amazing and will be in my life for years to come even when cancer does not live in my body anymore and I will always do my best to lend support to my fellow cancer fighters even when my battle is done according to the doctors, because I know, the battle is never really over.   In fact, it has only just begun.  As a survivor it becomes our responsibilities to reach out to others and never forget the experiences that we have endured.  I know I couldn’t.

For me personally, the two autoimmune diseases that I have will always compromise my life even if I go into a full and complete remission from cancer.  There is no cure for Sjogren’s syndrome at this time, and though one can live a long life with it, this life will always be plagued by the progressive deterioration.   In this I know that I will walk away from cancer with a reminder but I also know I walk away with such an appreciation for my life.  Not just my life, but the ability to appreciate every smile, every hug, ever kiss and every moment that God has blessed my life with.