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."
Monday, July 11, 2011
Why I Survive
I had a moment, sitting on the beach, sun shining on my face, wind blowing through my hair, x and c laughing in the water,j,mom dad, gramps and gigi talking beside me when I thought"Ahhhh, This is why I survived." I felt pure elation. There is no feeling better than extreme relief from having overcome life threatening adversity to find yourself in the perfect place, momentarily knowing you won, you beat that obstacle, and this is why. This is part of the prize. It's been suggested that the theory of "every action has an equal and opposite reaction" can be applied to more than just physics. If it's applied to emotions, the pure devastation and helplessness I've felt in the past can have competing happy moments, and it does. I remember the first time I could take steps independent of oxygen. I'd suffered severe shortness of breath for 6 months. I had a pneumothorax, pneumonias, lung biospies that showed nothing but fibrotic tissue. In Dec. I was finallu diagnosed with bronchiolitis obliterans, a likely fatal complication/ side effect of a non-related allo-genic transplant. At that point I consulted a lung genius with dana farber/ brigham and women's named Dr Weinhouse (who still assists in my care)and he finally talked me into steroids with photopheresis. Starting these at the same time, I can't say which helped most, but the steroids had me taking free steps within a week. I I felt like I was walking on clouds. Nothing better had touched my feet ever before. There are not strong enough words to describe the loss of a body function that you always counted on having, always took for granted. Devastated, floored, terrified, those words don't completely describe the shock and horror of losing your quality of life overnight. There are also no words strong enough to convey the relief of getting better, when you take those first painfree breaths and carefree steps. It's like receiving a blessing, having a wish granted, personally for you. There's no way to explain it. It's the best feeling in the world. I hope others who win even small battles in their fight against diseae get to experience the same feeling.