Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, April 18, 2009

Lifeline

“You have a son?” The mother of an 18 year old transplant survivor asks me.
“Yes, he’s five” I tell her, smiling and glowing only the way a mother could.
“Well, at least you have something to always hold onto.” She says in reply, looking at her daughter who was too young prior to her diagnosis to have children of her own.
K did take the proper steps to protect her fertility. She froze her eggs so they could be kept safe and implanted later after she has been cured, when she finds the right partner.
Now, however, as she is going through her treatments, as she is struggling to remind herself that the world is a good place that must be held onto to survive, she does not have that something, be it a child, a lover, a best friend, or a dream, that binds her here.
The original baldy wrote, prior to his end, and after the break up of his engagement that: Poppy was the bit of hope I had built my crumbling existence on.
I promised myself that if I survived my bone marrow transplant I would propose to her. Thinking of how much fun our wedding would be was one of the main focal points I used to survive.
She also said she was happy to sign up to IVF treatment and that if I did die it would be great having a child that reminded her of me.
Just by saying that helped me more than she will ever know………..
I think I have really made the best of the hand I have been dealt but now I can genuinely see no way out. (http://baldyblog.freshblogs.co.uk/2008/04/heart-break.html).

Do you see the theme among the three of us who are facing cancer in our late teens and twenties? I’m sure the need for something worldly to grasp onto is broader than our age ranges and disease types. I dare say anybody that has ever been faced with the distinct possibility of death understands that the outside world shrinks, slowly, as you become more and more ill.
Prior to diagnosis, you are as you are, playing games, working full time, cooking, going to movies, concerts, reading and doing everything you enjoy.
Virtually overnight with a diagnosis, you choose to leave those that mean the least to you to focus on what is most important. In my instance, I left work quickly. I pulled Xander from day care and we traveled every weekend to different areas: Boston to the children’s Museum and Aquarium, New York to see Yanellie and her two young sons, or just lounging at a friend’s homes whom we hadn’t seen in a while but missed. I chose to relish what may be the last freedom and autonomy I could have with my son prior to starting chemotherapy.
When chemotherapy started my focus became even smaller, my family, loved ones, and supporters existed, but I was no longer able to extend energy to maintain or begin friendships. I allowed this pastime to roll by the wayside.
Some days I could only lie in bed, leaving for food I needed and my medications. During those periods I would stare at the ceiling and imagine my life after the period was over. I’d wonder how strong I would become due to my trials and what I would do with the experience. I’d imagine Xander growing up and what accomplishments I would be able to see.
When I became desperately ill to the point I could no longer breathe, my system was failing, and the doctor’s had told my family I was going to die, I focused on my child. He was my one link to life. He was the lifeline I was grabbing onto. I told myself I had “unfinished work” and I needed to serve “my purpose” prior to death.
I woke up to cope with the side effects from the tragedy and slowly regained my strength.
I was able to do this because in my darkest hour I was focusing on the love I had on earth and how I would be able to return that love if given a chance.
Any other thought may have caused that line to fray and snap. If I had focused on loss or sorrow or pain I certainly would have left the world entirely. I chose not to. I held onto the good thoughts in my mind more tightly than I have ever held anything to my heart.
I’ve heard similar stories from many of us who have faced serious illness. For Baldy, it was the picture of his future wedding, the lasting love he would have, and his future children. When that was lost he eventually succumbed to his disease. He’d lost his link to life. He’d given up faith that the world had anything great to offer him.
I understand the fear the mother has about her teenage daughter. She wants her to have the one thing she needs to want to fight to the death for. She fears she does not have it. I’m sure she does or she would not have made it as far as she has.
I believe most people in our position harbor this one thing within them, whether it be a child, a friend, a loved one, a family member, a PET, a job, or a dream. It is what means most to us in this entire world which gives it the unique capacity to hold us here, fighting, long after we ourselves have decided the pain is too much. That one thing reminds us that there may be more great things out there in the world to find, coming to us, and keeps us grasping and fighting to find it.

1 comment:

Bekah said...

Dearest hillary,

This is the one post that you've written, that truly resonates in my soul.

Between my first round of ABVD to the auto transplant, and even between my auto and now clinical trials. It was during these times, that I reconnected my life lines: my mothers, my best friends in boston, my uncle, and my desire to make a difference in child's lives, whether that be through teaching, counseling, or mentoring.

You are so right on. And so, was the originally baldy. I feel incredibly lucky that I have so many people, that I would walk on fire for. These people are the reasons, I am still alive -- and I truly believe that.

I am so thankful, that X is in your life. And hope that other survivors who read your posts, are able to recognize their life lines.. it is such an important factor in the face of our illnesses.

Bravo -- much love,
(If you ever want to begin to discuss clinical trials, with me, for Hodgkin's please don't hesitate to e-mail)

Love
B