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slipslidingaway

(21,210 posts)
Sat May 26, 2012, 01:10 AM May 2012

Life, Interrupted: Hope Is My New Address

By SULEIKA JAOUAD
http://well.blogs.nytimes.com/2012/05/17/life-interrupted-hope-is-my-new-address/

Hope Lodge was also our address for the first 100 days after being released from the transplant floor at Sloan-Kettering and it was such a blessing to be near the transplant center, if need be, yet be surrounded by the caring people who run the Hope Lodge in NYC. On the 6th floor they have a terrace where we would walk to build my husband's strength ... 5 laps, 10 laps, 20 laps all with the top of the Empire State Building in view. On the terrace and in "our kitchen" on our floor we were far away from the crowds below us coming and going to Penn Station. We met people there that will be life long friends and others that we'll always remember fondly. This new entry makes it seem like yesterday when we were there, although we left Hope Lodge at the end of January 2011, it seems like yesterday as the memories and steps are so vivid. You could always tell the transplant patients, even on the 6th floor at Hope Lodge, as they were the ones wearing a mask. One day we decided to go food shopping a few blocks away, three caregivers and then three patients that wore masks, someone on the street said to us that soon eveyone would be wearing masks, he had no clue that their immunity was close to zero. We had fun and made the best of a troubling time, and so wish that our third buddy was still with us, we miss you
We're spending a few nights in NYC in the coming weeks and plan to visit Hope Lodge with fond memories and lots of Hope!!!
We have come so far, but we're still inching towards the "new normal" of a post bone marrow transplant patient. What memories this new entry has evoked, both good and sad for those who are no longer here.
Step by step, one foot in front of the other


"I opened my eyes to find doctors peering over my hospital bed. They had some welcome news.

I had for a month been living in isolation in the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center, my only option after my diagnosis with acute myeloid leukemia last year. Now, the doctors cautioned me that while my immune system was still very weak, my brother Adam’s healthy cells were beginning to engraft in my bone marrow. I was showing signs of progress: I had transitioned from my feeding tube to solid food, I was able to walk around — slowly — without assistance, my blood counts were going in the right direction, and I no longer needed to be connected continuously to an IV machine.

It was “graduation” day. The doctors were sending me to the Hope Lodge, a halfway house sponsored by the American Cancer Society, in Midtown Manhattan. I would live there for the next three months, cared for by my boyfriend, Seamus McKiernan, who is again helping me write this column as I regain my strength.

...The Hope Lodge is a nondescript building with five floors and 60 rooms next door to a Jack’s 99-Cent Store, one block from Penn Station. The sixth floor is reserved for healing seminars, cooking classes and other events sponsored by cancer groups. I see other patients in the kitchen or the elevator, and we stop for specialized chitchat like “Just coming from the hospital?” or “How did chemo go?” We are all here for a different amount of time, from a few weeks to a few months. With schedules overlapping, we are temporary hallmates, beholden to the kindness of strangers who raised the money to open this center..."

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