Comments on: Birds in Spring: I Just Want My Old, Carefree Life Back

By: Marie Banham

Marie Banham — Fri, 19 Nov 2010 02:19:06 +0000

Dear Lou Ganim,

I was very interested to read you have had two transplants and are being treated at Sloan Kettering. Could you please state what types of transplants you had (allogeneic or autologous), how far apart, and the percentage of remission in each. I am 65 yrs. of age and had an autologous transplant in November 2008. In November 2009, I did achieve a complete remission but only for about one month. Thalidomide and Revlimid no longer work for me and I am on my last drug, Velcade, plus dexamethasone. This is currently working, but I am beginning to feel desperate and would like to pursue another transplant (possibly an allogeneic) even though the risks are higher. Perhaps it would be worthwhile to get a second opinion from Sloan Kettering. Would welcome any comments or information you would wish to share.

A fellow multiple myeloma survivor since January 12, 2002.

Marie Banham

By: Marcie

Marcie — Sat, 21 Aug 2010 02:23:29 +0000

Lou,

Your article touched me deeply as well. I was diagnosed in ’08 and had a transplant last year. I gave a copy of your story to my therapist so she could better understand where I was coming from in our words. She liked it so much she copied it and gave it out to her patients who had cancer.

Thanks so much.

By: Olof

Olof — Wed, 28 Jul 2010 15:43:34 +0000

What a gift you have, Lou! It’s a striking article where you describe what I, and probably many other MM patients, feel and experience. You helped me be more aware of my own feelings and I’ll use your article to communicate to others.

Thanks Lou! Olof, a fellow MM patient from the Netherlands

By: Pat Killingsworth

Pat Killingsworth — Thu, 22 Jul 2010 21:11:04 +0000

Very insightful and well written, Lou! Thanks for sharing- Pat

By: Cath Harwood

Cath Harwood — Wed, 21 Jul 2010 09:31:34 +0000

Your story touched me deeply Lou. I told everyone what was happening to me and was inundated with caring people who wanted to help in any way that they could. As you know, there was not much that they could do, but just the outpouring of love was very uplifting for me. I have managed to last for 8 years now — after being given at best 2 years — and that love and care has been constant for several of these friends. It has really taught me the true value of friendship as well as giving others the opportunity to show and share their feelings with me. Somehow, knowing that someone is ‘terminal’ seems to give others the freedom to speak openly and to join in the mind set of saying exactly what they are feeling. So, I think perhaps you may have missed out on an abundance of wonderful friendship and family expression of feelings for you by not telling others what you were going through. However, your story reminds me of how unique each of us is and how differently we all face the challenges that are given to us. Congratulations on highlighting how we all want what use to be, but have come to appreciate what we have as the new normal!! Cheers, Cath

By: John

John — Tue, 20 Jul 2010 22:07:27 +0000

As a fellow MM patient-

“Never had I seen so much wonder and beauty in a single grain of sand”

By: Suzanne Gay

Suzanne Gay — Tue, 20 Jul 2010 19:00:20 +0000

oh thank you thank you, Lou and also Lynda Clark, for the encouragement that we MM people may reach a point of realization of not needing to do something meaningful each day but rather just enjoy every moment…i am just a year out from a single ASCT & have yet to fully reach that sense. perhaps because i feel so great, off treatments & meds, just a vitamin & calcium and i know this won’t last. there’s such anxiety that i must do something, travel somewhere — yet i am so amazingly aware of my surroundings, love seeing the lake across my pool, the way the wind moves the palms, the jays in the oak screaming at the hawk, the summer clouds before a storm….etc. i enjoy each moment & want more. simply.

By: Lynda Clark

Lynda Clark — Tue, 20 Jul 2010 17:33:05 +0000

As a two-time stem cell transplant patient like yourself, and (almost) five years in remission, I feel like you’ve been inside my brain. What a wonderful article!!

One thing I try to consciously think about while living my “new normal life”–I don’t put pressure on myself to do something fabulous and life-changing each day of my “new life”. I just enjoy life as it is, whether that means sleeping in on the weekends, being a couch potato watching a silly TV show, or just folding laundry!! I have enough quilt without feeling that as a person aware of the finite length of life, I need to do something “meaningful” each day! It took me awhile to realize that.