Saturday, June 01, 2013

Celebrating my Second Birthday Today...Nine Years Since BMT

Today I celebrate my second birthday. I am nine years old. The anniversary of my bone marrow transplant is always a time for celebration, even if it’s only me celebrating. It is amazing to me that it has been nine years. I remember it quite vividly, yet at the same time, it seems an eternity ago. So much has happened in the nine years since I wrote the following:

Excerpt from Rebirth:
June 1, 2004 - Tuesday, Transplant Day (Rebirth Day)  Day 0

As the day wore on and the time approached for Barbara’s stem cells to be transfused into me, sorrow replaced anxiety. I am losing a part of me as her stem cells replace mine and begin producing her blood in my body. My blood type will change from O- to O+, which is Barbara’s blood type. This changing of blood type is somewhat unsettling to me. However, I also view this day as one of rebirth—another birthday to celebrate. It is extraordinary how this whole bone marrow transplant process works. It is truly miraculous. And not only is this a physical rebirth, but because of all the self-reflection and positive changes I’m attempting to make in my life, it is a spiritual and emotional rebirth as well. So despite feeling melancholy over what I’m losing, there is excitement and anticipation about what I’m gaining. I thank God for the new stem cells that will generate new and healthy blood in my body and grant me a second chance at life.

Around 3:30 p.m., Dr. Hsu, another physician in Dr. Goldberg’s oncology group, administered the blood transfusion. The transplant was a slow intravenous infusion through my catheter of the bone marrow collected from Barbara. Karen B was already stationed at my bedside and Karen waltzed into the room just minutes before the doctor began the procedure. The transplant, which took all of twenty minutes, was uneventful except for an intense scratchiness in my throat caused by the preservative in the blood. I was given Benadryl prior to the transfusion, which quickly sent me off to la-la land. Meanwhile, my sister and friend sat vigil, watching my blood pressure rise and fall, sometimes significantly, on the monitor. The nurses assured them that this was normal.

Andrew and I - he made his First Communion in 2012
My nephew Andrew turns nine in August; his age is a reminder of how many years ago my BMT took place. In a way Barbara gave birth to both of us in 2004—she was my bone marrow donor while pregnant with him. There is a very deep connection between me and that little boy, who is gorgeous and smart and funny. 

I feel lucky and so blessed to have not just lived, but thrived these past nine years. I don’t know why I survived and other cancer survivors I’ve known did not. All I know is that my life is a gift, and with that gift comes a responsibility to give back. I also try to enjoy and appreciate every day I’ve been granted since my cancer diagnosis. I wake up every morning, giving thanks for another day on this glorious planet, even when I’m highly disgruntled with current events in this country and around the world.

The biggest life lesson from my cancer experience is that not one of us is guaranteed tomorrow, so don’t put off doing activities, taking trips, or being with the people who are most important to you; or taking a risk to accomplish a long-desired goal that you have been too scared for one reason or another to pursue. Life is scary; taking risks is scary, but I’ve found those risks to be worth it.

I hear people lament all the time how life is not fair, and ask why do bad things happen to good people? Life is not fair—bad things happen to good people and wonderful things happen to terrible people; sometimes there seems to be no justice. However, and as much as I want justice, fairness, and equality to prevail, what matters is how you play the cards you are dealt. Do you fall apart and live with anger and fear, or do you embrace [accept] what is and figure out how to live your life in the best way possible for you and for those who interact with you at any given moment?

One of my favorite stories that Thich Nhat Hanh includes in his book The Miracle of Mindfulness is Leo Tolstoy’s “Three Questions.” Versions of the story vary slightly, but it is summarized below an the excerpt  from Rebirth.

April 6, 2004 – Tuesday

In The Miracle of Mindfulness, Thich Nhat Hanh recounts a story by Tolstoy about an emperor searching for the answer to three questions:

1. What is the best time to do each thing?
2. Who are the most important people to work with?
3. What is the most important thing to do at all times?

The answer is this:

Remember that there is only one important time and that is now. The present moment is the only time over which we have dominion. The most important person is always the person you are with, who is right before you, for who knows if you will have dealings with any other person in the future? The most important pursuit is making the person standing at your side happy, for that alone is the pursuit of life.

Often we forget that it is the very people around us that we must live for first of all.

Nine years later, I try to remember the answers to those questions and to be present whether I am with work colleagues, friends, or family members, especially those nieces and nephews whom I was not sure I’d live to see grow up, or even see some of them born. I love being an aunt. 

Today, as I celebrate my second birthday, I give thanks to all those who helped me through that difficult period: my amazing family and friends (many of whom are my "framily;" thanks Karen Burke for the new word!); my doctors, the nurses and aides at Hackensack University Medical Center--they were top-notch, caring professionals; and the Leukemia & Lymphoma Society, which has a special place in my heart, and the other cancer support organizations who work tirelessly to support survivors and their caregivers as well as to fund research to cure cancer.

Here's to the next nine years! 

Tuesday, April 16, 2013

Life is Unpredictable, which is Why It's so Valuable

December 21, 2003 - "It is said that life is unpredictable. Well, that is an understatement. I have leukemia--cancer. Never in my life did I imagine the word "cancer" could, or would, be associated with me."

This was a journal entry I wrote three days into my hospital stay after my leukemia diagnosis and how I opened Part I of my book, Rebirth. In just one day, December 18, 2003, my life shifted dramatically. This is the day I return to when tragic events happen. So yesterday when I heard about the bombing in Boston at the marathon, as when I heard about the school shooting in Newtown, Connecticut, in December and the devastation Superstorm Sandy wrought upon thousands of residents in the Northeast in late October, my heart broke again, knowing many lives would be shifting dramatically. Furthermore, many of those running in the marathon were doing so to raise money for cancer research and programs, so to me, it seemed personal.
In Boston, three people died, one, an eight-year old boy. Over 100 were injured, many losing limbs. It is horrific events like these that leave us feeling helpless and scared because of the unpredictability and devastation; we long to make sense of the tragedy and destruction. How do we protect ourselves from mass shootings and bombings, or from natural disasters when the damage exceeds what the experts may have been forecasting? The answer is: we can't. 

Bombings happen all the time around the globe. Western countries are largely spared these incidents, so when they happen, it is shocking and shakes us at our core. But I wonder, in places like Iraq and Syria where bombings happen frequently, do citizens ever get used to it? Or do they live in terror every day? My guess is they live in terror every day and try to survive, doing the best they can for themselves and their families.

I know I am not alone when I say these acts of terror—and they are terror, maybe not terrorism because that has a political component to it, but it is terror nonetheless—sadden and confuse me because of the senseless loss of innocent lives. How can someone care so little about their fellow human beings, people they don't even know? As someone who deeply empathizes with human suffering it is agonizing to watch, to witness people's fear and grief. How do we exist in such an uncaring, cold world?

Nature, while beautiful, is brutal and powerful. Mere human beings are no competition in the face of a tsunami, earthquake, hurricane, or tornado. If they are lucky enough to find protection from Mother Nature's wrath, they survive. Human beings are horrible to one another. We treat each other cruelly and despicably, in varying degrees, from nasty comments to those with whom we disagree to bullying, torture, and human trafficking of children and women into the sex trade, and yes, killing one another. The way we treat each other is truly an abomination.

The only way to cope with the incomprehensibility of it all is to focus on what we can control and on gratitude. We have no control over outside forces, even when we think we do. So what can we control? The only thing I've found I can control is my own actions and how I respond in any given situation. I also try to focus on all that is wonderful in my life.

I am thankful for my family: both of my parents are still alive, and I have a great relationship with them; my sisters are my best friends; their children are like my own. I didn't know nine years ago when I was going through cancer treatments if I would see Aidan and Andrew grow up, but Aidan is now ten and Andrew is eight and they have a little sister who will be seven on May 1. My other sister has a daughter who just turned eight and a son who is five. How lucky am I?

My friends are amazing and my day job allows me a decent income and flexibility to pursue my dreams and goals. Again, how lucky am I? When a senseless tragedy happens, we must mourn the losses and acknowledge them, but we must also remember the positives in our own lives. I still believe there are far more good people residing in this world than evil ones. Sadly, it is the evil ones who more often capture our attention.

Fellow Everblogger E.A. Hauck shared a quote from Fred Rogers (I loved Mr. Rogers) yesterday which I had forgotten. It was a needed reminder that while we pay attention to the tragedy, we shouldn't forget the helpers. It is during tragedy that the best part of us is revealed as we care for the injured and support each other, so look for the helpers—there are many and we thank them.


When I speak at cancer conferences or events, I end my talks with: "None of us, whether healthy or sick, rich or poor, young or old, are guaranteed tomorrow. Live each day to the fullest. The past is gone, the future hasn't arrived; the present is all we have, so embrace it."

Peace to all.