Wow. I've been in the hospital for 129 days. Holy peach pits. That's longer than a semester in college. That's longer than it takes to write a Hollywood script (based on a best-seller). That's longer than Boy George's much-buzzed-about musical "Taboo" played on Broadway. That's longer than the ENTIRE official NFL season.
Life is always in transition and in the 129 days that I have been sequestered away, so much has happened.
Some of us joined into marriage to begin a new life, some of us moved to another state to start all over. Some of us were devastated with the loss a loved one. While quite a few were blessed with a baby boy or girl. (One of us, who was told she could not have children because of her marrow transplant, is now pregnant with twins!) Some hearts were broken and some new loves were found. Some of us traveled far to walk through ancient ruins and bask in exotic suns. While some of us focused on the nest and re-discovered ourselves. The home of one my family members burned to the ground. While another friend built his dream second home in the mountains.
In 129 days, two friends who were of my greatest cheerleaders, supporters and activists were suddenly and unexpectedly diagnosed with cancer. They lived the last weeks of their lives fully, grasping every moment, not withholding words of love, holding the hands of those who loved them, those who stayed at their side every step of the way. In the time they had left on earth, they lived a much-lived life. With grace, they stepped up, faced forward and did not run away from their fears.
I've said this before and I'll say it again: Life can be sudden and unexpected and your whole world can open up or be crushed in a split second. We all live in uncertainty, but it is in the unknown that ANYTHING is possible. Trust in the uncertain. I think of how different just my one little life was one year ago, before the relapse. The hopes and expectations of how 2006 "should" have been. I was excited to start a life anew, but cancer, for the second time, took that dream away. For a moment, I thought all was lost and that this story would end dark like a Greek tragedy. I'm glad that I was wrong. I look back now and see that I HAVE started a new life. Not the glossy romanticized drunken bohemian picture painted in my head, but one that is true, honest and real, rich and meaningful. 2006 was not what I thought it should be. It was so much more.
I've spent the majority of the last two weeks in bed. It is taking a long time to get up from the serious knockdown from earlier this month. I can't believe it's November already. I'm on even MORE medication, which has turned my brain into oatmeal. I feel like a zombie underwater. But I reached a MAJOR milestone today. I ate breakfast OUTSIDE. For the first time, I am allowed out of my room WITHOUT a heavy surgical mask! Yes, under the trees, in the grass, with nothing between my lungs and the luscious air. Small steps, though. I still have to wear a mask in the hospital or if I find myself in a crowd. It's flu season, so we have to be careful: visitors still ought to wash hands and wear masks and I can't do any huggin' or kissin' until my blood counts get a little higher. Baby steps. It's so vital yet so torturous!!!
Another wonderful milestone: I can EAT OUT!!!!!!!!! I am no longer on a restricted diet! Though again, baby steps. I'm now on a "cautious" diet. No sushi, restaurant salads, medium-rare steaks or buffets. Only thoroughly cooked food in uncrowded restaurants. But, oh the joy of a fine meal and fine conversation with my beautiful friends!!! I can't wait!!
At City of Hope, they held a Halloween parade for all the pediatric patients. These sweet kids and their families gathered at Helford, the main building and then followed a path around the hospital dotted with candy stops, manned by costumed staff from the many departments on campus. The little patients looked like any Trick-or-Treaters: vampires, Cinderellas, pirates, angels and ghouls. The only things that gave away the fact that these adorable faces were fighting cancer were the wheelchairs and I.V. poles. But their eyes shone with the same excitement and glee of any child as they would stop at a desk or a gaggle of nurses and get handfuls of candy. Many of the kids used pillowcases swiped off their own hospital beds. There was so much love and preciousness in the air. All we wanted to do was help these kids feel normal. To feel like they were still a part of this world, this celebration, and this life. It was the best Halloween party I ever went to.
We still have not received the final results of the marrow graft test, but early summaries have shown that there is NO INDICATION OF LYMPHOMA. Now we are waiting to hear if the graft is still holding on and how well the marrow is performing. So far, its performance has been far less than the doctors have hoped for, but they are delighted that I am still alive and kicking. A miracle. Truly a miracle. Prayers WORK.
I am so happy to be alive and I can't wait to start living again. My desire is to be the proverbial "bird out of a cage", "first out of the gate", "man with a mission", but I have been told that going home is merely the next small step in my recovery process. "Whoa, Nelly" is the message I'm getting from doctors and fellow BMT survivors. There is still that "50% mortality rate at 6 months" statistic looming over my head. I'm at Day 119. That leaves another 61 days to go to beat the odds of the next stage. Every day is a coin toss.
Simple pleasures. Soul connection. Meaning. Love, laughter and joy. (And occasional moments of complete nonsense just to stir things up a bit.) That, for me, is enough for now. Enjoy this Autumn. Its wonders. Its snap. Its crispness. We are blessed.
P.S. Thanks to everyone who came to the Oct 28 Fundraiser/Marrow Drive. It felt like a mini-reunion wrapped up into one big pre-Halloween party. Because of everyone's hard work and participation, it was a tremendous success!!!