100 days

Dear Friends, Just a little over a week ago JJ reached a milestone. He has now been in the hospital over 100 days. Think about your life over the past 100 days. For many of us, it went by unnoticed, but for JJ it has been a day in and day out struggle with the ravages of this wretched disease. Days filled with more downs than ups. Imagine 100 days full of bone marrow biopsies, transfusions, medicenes that taste awful and numerous tests, none of them fun. 100 days of hospital food where (and I kid you not) their idea of good food is a mound of mashed potatoes (no gravy) and a pile of cooked spaghetti with no sauce. With great anticipation for a cord blood transplant only to have it dashed by a formidable foe. Day after day in a tiny hospital room where the door must always remain shut to keep out infection, where your life is no longer private, where you are held hostage on your hospital unit by medical science that is treating your disease but sometimes forgetting to treat your humanity. Imagine being tethered to an IV pole for 100 days. An IV pole that is your constant companion. It goes with you everywhere you go. You cannot move through your room without caroming into something. Where the computer that controls the drip constantly malfunctions and blurts out an annoying beep that could care less whether you are trying to sleep or not. An IV pole that JJ has now named Al Baxter.

100 days of a lot of suffering.....uncontrolled pain at times. 100 days that included a bout of shingles, contaminated platelets, high temps, excruciating headaches of unknown origin, an aversion to food. And that's just the physical suffering. There has been emotional and spiritual suffering as well. Imagine 100 days in a tiny hospital room shut off from the rest of the world where your only contact with the outside is a tiny contingency of people who visit you because they are devoted to you, the constant drivel of the TV and the very loving, supportive comments of friends and strangers alike who post on the blog or email. It is hard to have a clear perspective when you are so sedated -you lose track of time, can't remember conversations, can't trust the razor sharp mind you used to have to be there for you . But this all adds up- layer upon layer until it is difficult to believe that you matter. This has been JJ's incredible journey these last 100 days.

And we who love him have been on this journey with him. It is important for us to bear witness to his suffering. It is important to him too. So at times we sit in silence next to his bed, as he sleeps. Not a restful sleep, but the kind of sleep that registers pain in his deeply furrowed brow. A sleep that is tortured by nightmares that only the unconscious can conjure up in the dark. So when he opens his eyes he sees the face of someone who loves him and has not forgotten him. And of course as we bear witness it adds to our suffering as we stand by feeling helpless and at times hopeless in the face of this wretched disease. We are so privileged to walk this journey with him-notably his beloved Sara, his loving brother Jason, his delightful nephew Camie, Cami's Mom- Katie, and me, his Mom. With others who have visited too. His devoted sister Reesa, his brother John, my husband Bill, Sara's family-Mo, Joel, Elsa. And then there is Steve, Jennifer and I am sure I have forgotten others. But our lives impel us to live them and so we do. But for JJ life is fragile and finite. He wonders, does his life matter? What will be his legacy? Will we remember him? Will you remember him? Will you study his profile in courage and carry that forward with compassion for others who will walk a similar path? So many of you have reached out to JJ and to all of us. We are deeply touched and we will pay that forward for the rest of our lives. But dear friends this is an aggressive disease that has attacked a gentle soul named JJ. He presses on. He inspires all of us but he needs us now more than ever. Because it has also chipped away at his spirit and his spirit needs an injection of hope, love and encouragement. He needs to know that you have not forgotten him, that he matters and that you are sending him your positive energy.

We are asking you to help us restore JJ's song-the music that plays sweetly in his soul. How you might ask? Here is how: Please send JJ a bell for Christmas. It can be a bell of any size. And with that bell a word of encouragement or if you know JJ perhaps a note that tells him what he has meant to you in your life. We want to fill his space with bells. Each bell will represent someone out there who is thinking about him and cheering him on. And then we will ring those bells to call to his joyful spirit. We know that this will be powerful and that not all medicene comes in a bottle. So if you are up for this please send JJ a bell for Christmas. You can mail it to: JJ Lehmann 14837 Crestview Ave West, Rosemount, MN 55068. Thank you for visiting his blog. Thanks for posting messages. You can also email him at followthebreath@hotmail.com Never underestimate the power of your love as you reach out to him and to others. Blessings to you all this holiday season, JJ's Mom

A Letter to a Friend

Dear Bruce,

A few weeks ago on October 12, I was fortunate enough to meet you. This is the dream, I believe, of millions and you were gracious enough to offer me some of your time.
I am not a lifetime fan of yours; in fact a few years ago, I was one of the millions who didn’t understand the meaning behind Born in the USA. Don’t worry the scales have fallen from my eyes.
I cannot tell you that I listened to Born to Run with windows down, cruising down some highway in the 1970’s. But, you have become immensely important to me over the last year, especially the last six months.
I was diagnosed with ALL (leukemia) in May of 2004 and I have been battling it ever since. I am not sure whether I am winning or losing, but I try to fight with dignity, compassion, and authenticity. Three adjectives that could also describe your career. For some reason, well I think I know why, your music touched me to the core. The way that you describe suffering, and the paths that folks take to end their suffering is incredibly astute. I have known physical suffering tremendously this past year and a half. With this physical pain came emotional and spiritual pain. To Live truly is to suffer. But, just as the Buddha also teaches us, you sing that lying down to this suffering is not the answer, neither is adding to the pain by hurting others. Though we both have and will continue to hurt people, we try…we try.
As I fight this cancer and experience this suffering, I am constantly urged on by your words and music. I am never alone with you on my radio.
When I met you, you gave me two incredible hugs that I will surely never forget. I felt as if you opened yourself up to me fully, took my pain in, washed it clean, and gave it back to me. And then you announced me has your friend during the concert and played Thunder Road, amazingly I might add.
It must be weird to know that something that you did remain another’s most precious moment, or their greatest experience in life. I don’t expect you to be my savior rising up from the streets, but you have become a teacher, a friend, and an inspiration to help me get through the rough and not so rough moments.
There is, of course, no way to truly expound my gratitude in words, so I give up and just use the easiest way I know of: THANK YOU!

Almost done

Hey kids,
I am officially on day 4 of the five day chemo treatment. So, I am almost done, well after the poison they are going to give me some gsf's growth stimulating factors. Apparently these Italians found that this makes the cells weak, so this is the last part of the treatment.
I am still having a hard time eating and my spirits have dipped a bit. I guess i am just sick of being in the hospital. Ugh, I gotta get out of here.
Well I hope you all are doing well. I changed rooms so my new number is 612-273-0508.
I hope to hear from or see you all soon,
JJ

Reconnected

It’s been a long time coming…and I am sorry. Unfortunately some things in cancer treatments are unpredictable, and these little bumps can disconnect us from each other. I have been away from so long because first we moved into a new apartment and it takes awhile to get internet hooked-up. Also, I developed rash which turned out to be shingles, which is a second outbreak of chicken pox. This can be extremely painful, and potentially dangerous. Fortunately I had a very mild case and caught it very early and we were able to treat it successfully. This caused me to be put into isolation, which amongst other inconveniences kept me away from the internet. Obviously, I am connected again and I will try to keep up my usual load of entries.
Because of the shingles onslaught we also had to stall beginning chemotherapy. Most of you know that I was on my way to transplant, but I still have about 1% of blasts in my marrow. Normally, this would be acceptable to go on with the transplant, but the docs feel that my tumor is too aggressive and they want my marrow completely clean.
Again, because my disease is aggressive my doctors put their collective heads together and looked toward the country shaped like a boot. This treatment which has not even been published in paper yet (I am so cutting edge, I know) involves using four drugs over five days.
If this doesn’t work I am seriously considering cryogenics, and just get frozen until they can cure Leukemia.