Disconnected

Hi Everyone, JJ wanted me to pass on to all of you that he cannot post on the blog right now because of computer problems. His lap top cannot access internet explorer and the hospital will not let him use the computer in his room (even though he was encouraged to use the computer in his room on the 6th floor) They may be able to get him another computer by the end of next week (or not). If anyone has a lap top you could let him use that would be wonderful. The computer is one of the few links he has to the outside world. Obviously he cannot check his email either. Oh woe. If there is anyone out there who could provide him with a computer please call call me at 651 714 1506.

The transplant went well. It is a very quick process taking only about 10 minutes through his IV line and his Hickman. JJ's beloved Sara was present, myself (his Mom) and his very dear friend Bill (from Colorado) was there too. We each passed the two small plastic bags into each other's hands before he was infused. JJ named them Louie and Butterfly. Right now those stem cells are sitting in his marrow. They should engraft in about 3 weeks time and then one will take over and become his new blood system. Something kind of interesting: He has type O blood and the cords are type A. This means that JJ's blood type will now become type A!

Despite the promise of the transplant JJ has not had a smooth road. He passed out a few times and through tests they found that his adrenal glands have shut down. They are now giving him medication for that. But the consequence for that is that he cannot get out of bed without assistance. His severe heartburn and acid reflux they believe is caused from his gall bladder. Were he someone else the gall bladder would be removed. This has been an ongoing problem for a while now. He is now getting antibiotics for that. We are grateful that he has not gotten any major infections thus far, but with his marrow empty and no cells growing at present he is very at risk. It is a very scary time.

JJ's journey has been long, treacherous, and mostly disheartening. But the fact that he made it to transplant offers some hope. But he is tired...tired of the journey he is on and wants desperately to leave the hospital and rejoin his Sara and his beloved cat Tara. Our fervent hope is that will be able to happen for him soon. But his journey will be far from over even then. That's why your encouragement, prayers, and love pouring out to him is so critical right now. Please keep it coming. Knowing that others think about him, pray for him, and send love to him has made all of the difference for him.

A huge thank you to Bill (from Colorado) for your compassionate presence this past week. You are an incredible friend and a gift to the planet. Thanks also to Tyler (JJ's lifelong friend-another gift to the planet) John and Kristina, Steve and Scott, Marja and Trish for your visits. Thank you Jason for your super-platelets! And of course Sara, beloved Sara. How blessed JJ is to be loved by you and to have you as his companion on this incredible journey. Please send Sara your love and encouragement too. She is the unsung hero in all of this....

As this year ends and a new year begins, embrace the unwritten pages of your life and be grateful that there are empty pages to be written..... we carry on one page at a time and are grateful for each day that JJ is on the page with us. We hope for many more pages filled with JJ..... Much love, Linda (JJ's Mom)

Transplant Day

Hi All, Today at noon JJ will receive two cords or a stem cell tranpslant. One of the cords is from a girl baby from St. Paul, MN and the second is a boy baby from Massachusetts. Then the battle begins for one of them to become JJ's new blood system. We will try to bring you updates as he faces many difficult days ahead. Please keep him in your prayers and use whatever spiritual traditions you hold dear to your heart to send him your encouragement, thoughts of healing and love. You may also send him an email via followthebeath@hotmail.com Much love, JJ's Mom

We've been launched

So this is our second day in the hospital and today has been laregly about getting to know the doctors and nurses and aides.

Today I got two treatments of chemotherapy drugs. One was fludaribine and the other was cyclophosphomide. The cyclophospomide is very dangerous to the blatter, so I need to urinate every two hours, even during the night...yes, do wake me up to go pee-pee.
Which has to my destruction of my little e ego...they need to keep track of everything that goes into me, and, also, everything that goes out...I have been used to them collecting my urine, no big deal, but know they need to collect my stools to know where I am at and how much I am excreting.

Well,
I hope of your bowels are moving well and feeling great,
JJ

Clarion Call

I hope everyone is feeling well and happy. I thank you for viewing and reading my blog. Every time you read my blog our connection continues to deepen. You are taking a journey with me filled with tears, pain, anxiety, hard times, and sickness. You are also walking with me through happiness, laughs, love, and compassion. I am reading a book by a Zen practitioner called Lotus In The Fire, he writes about his journey through AML and a transplant. In it speaks of something that I have felt deeply as well. When he was first diagnosed he could hardly fight, yet he survived, his and my only explanation was that the love of our friends and family is what made the difference, the crucial difference between life and death.

Most of you have been following my fight for life for a while now and I have felt and needed your thoughts, gifts, prayers, emails, tonglen, and other modes of support. You have helped me to live thus far. You are part of the reason why I am alive still…go on take a minute and smile and appreciate that you are a lifesaver, your love and compassion have saved my life time and time again, never doubt the power of your own compassion and spirit, never think that an action is to small or has been overlooked…it is said that the flap of a butterfly’s wings can have an extraordinary affect on the entire universe.

But now I must make a call, a call to all of you who love me and have been touched by me. We are about to embark on our most important, yet potentially deadly, leg of the journey. On Tuesday, I will be entering the hospital to begin a cord blood stem cell transplant. I will first receive chemotherapy and radiation that will kill massive amounts of Leukemia blasts. They will also damage my bone marrow to such an extent that I would die without a replacement. This replacement is the stem cells from two different umbilical cords. As these stem cells engraft into my marrow, one of the cords will “win out” and become my new blood system. This system will then actively fight any leukemia cells that are left. Thus curing me and allowing me to fulfill my life goal of becoming a world champion curler.

Here is my call. It is a responsibility that I do not ask lightly. This is to be your responsibility not mine. I promise to fight my ass off. What I need you to do is to concentrate your efforts…pray harder…keep me in your thoughts all day…email me…take care of my mother…take care of beloved, Sara,…if you belong to a church, please put me in your prayer circle or weekly’s…for my Buddhist friends, please practice for me, send me your blessings, if you know a Lama or Monk ask them to say a prayer for me, or do a puja for me. These next few months are critical…I need you all. Expand the circle by telling someone else my story and by giving them my blog address.

Thank you for your continued love and blessings,
JJ

A simple advert

As many of you may already know, having a serious illness puts great stress on many things for families. One of the lamest worries, but most substantial worries is money. Sara and I found an apartment close to the hospital. Sara is not able to work (although when I am out of the hospital she is paid to be my caregiver, Unfortunately this is a pretty rare occassion) and, of course, neither am I. Because of this we depend upon you, our family and friends. As a fundraiser, we are selling these beautiful blue bracelets for $5.00/each. My Uncle Mike graciously paid for the bands, so that we could get the full benefit from this fundraiser. If you want one, please ask me, my mother, Sara, the Jensen's or Steve Spina (in Eau Claire).
They Say JJ's Compassion Crew. It was our final choice after a fun and very hiliarious two hours of trying to come up with the catchphrase. We finally settled on JJ's Compassion Crew, because I would like my story, my life, to encourage others to help relieve the suffering of others. That is my purpose and my goal. So, if you have been touched by me...help another.
These would also make a great stocking stuffer for people who you think could be touched by my story...give them my blog address as well.
I hope this was not too cheesy.
I love you all,
JJ (place your orders with if you want at followthebreath@hotmail.com)

Late nights, early mornings, tests all day

Hi all,
I am planning on writting a long message to you all tomorrow, as it is almost 1am I should probably go to bed.

For now, we are in the workup phase of the transplant, which means a lot of tests and consultations.

I love you all,
Talk to you tomrrow!!
JJ

The Finger and the Moon

Alright so it has been awhile since I have written one here, but instead of apologizing I am just going to go ahead and write something.
Something that I have noticed is that besides my Bu-crew down in Boulder, the majority of people reading this blog, sending me emails, doctors, nurses and family are Christian or non-religious. Now I certainly know what it means when someone says they are praying for me. I love that...I thank you so much for your prayers and this email is not meant for you, nor is it meant as a diatribe against non-Buddhists (my mother is a non-Buddhist, give me a break) it is meant more as a song of loneliness from a Buddhist, whom misses his community and feels disconnected from his sangha. I love my family (that goes without saying) and they have been my greatest support, but none of them knows me as a Buddhist. No body here understands what I mean when I say emptiness or impermanence, or inter-being, or can correctly pronounce Sariputta.
I am so glad we moved back here to be with our families, but I did not know how much I would miss having a Sangha-a group of Buddhist practitioners to talk to. Beyond this people who really should not be making religious comments to me have asked why I don't love Jesus, Why I don't believe in God? Etc...
My beloved Sara Is really the only one here who knows me as a Buddhist...Knows that this is a huge, substantial part of my being...Who knows the transformation I have gone through because of Buddhism. Buddhism has taught me how to live, love, and die. I am sorry if this has come harshly or feels like too much whinnying, but who better to express my inner thoughts to than everyone I know.

While I was reading a hagiography of the Buddha written by Thich Nhat Hanh last night I came across this passage. Buddha is speaking to an ascetic (Hindu religious man) Dighanakha. Dighanakha asks the Buddha if he has any doctrines or dogmas. The Buddha replies " Once a person is caught by belief in a doctrine, he loses all his freedom. When one becomes dogmatic, he believes his doctrine is the only truth and that all other doctrines are heresy. Disputes and heresy all arise from Narrow views...Attachment to views is the greatest impediment to the spiritual path.
He then goes on to tell a tale of a widower who leaves his child at home while he goes to work. Some criminals go to his house and kidnap his kid and burns down his house. He comes home and finds the charred body of a child was found outside his house, he cremates what is left of his son and keeps the ashes. Several months later, while the man is crying over his lost child, his son breaks free and comes home, but the man refuses to believe that it is his son and refuses to open the door.
The Buddha says "Thinking that we already possess the truth, we will be unable to open our minds to receive the truth..."
Dighanakha asks him "well, what about your own doctrines?"
The Buddha replies, "My teaching is not a doctrine or philosophy...It is the result of direct experience...You can confirm them all by your own experience...My goal is not to explain the universe, but to help guide others to have a direct experience of reality."
Dighanakha then asked him, "What if someone perceives your teaching as a dogma?"
Buddha replies, "...My teaching is a method to experience reality and not reality itself, just as a finger pointing at the moon is not the moon itself." The story goes on from there to expound more upon this topic but I think this is enough.

It has reminded me that sometimes I can be closed off to things foreign to me, that often I take someone's for it, without checking it out myself, That I must open myself even more to the truth that is found in this path that I am on, that I can learn a lot from cancer, That I can teach you something even though we are of different religions, that some of the people that I know need to open themselves and to stop believing only they are right, that perhaps there would be less conflict if we came to conversation with an empty tea-cup--ready to be filled.
Does it say anything to you?

With All My Love,
JJ

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.

Unconnected

Hey everyone, I am writing today because JJ and Sara have moved into an apartment. The doctors thought JJ should be closer to the hospitol than our mothers' house in Rosemount. Since they are in a new place they have no phone (except cell), no cable , and no internet. JJ should be able to write in about 3-4 days as he will be back in the hospitol for more chemotherapy. Now more than ever before JJ needs each and every person who reads this blog to continue to give him your love. It is this love that has kept the fight in him since he relapsed. I can not tell you how much what you have done for him has meant to me and my family. Thank you to everyone whom has continually given my brother words of encouragement, hope, and love. Most recently Thank you to Springsteen fans around the country for your words and thoughts. And from the bottom of my heart thank you to the special friend that set up JJs' meeting with Bruce I wish you could have seen how happy that made him. To unselfishly give your time for the happiness of another is love.
Love to all---Brother

This Sara and I before Bruce's soundcheck. We were all alone with him during the soundcheck pretty awesome. He played Tunnel of Love for us, but did not play it during the show.
The Set list is:
Wreck On The Highway
Idiot's Delight
Into The Fire
Devils And Dust
Lonesome Day
Long Time Comin'
Back In Your Arms
For You
Johnny 99
All I'm Thinkin' About
Ain't Got You
One Step Up
Reno
Nothing Man
Thunder Road
The Rising
Darkness On The Edge Of Town
Jesus Was An Only Son
Two Hearts
The New Timer
Matamoros Banks
(encore)
I Wanna Marry You
The Ties That Bind
My Best Was Never Good Enough
The Promised Land
Dream Baby Dream

sneak preview

So I get home from the hospital after another month of bad food and nice nurses, and the very next day I am being hugged by the Boss, yes that is right Bruce Springsteen, no joke, I will tell you the full story soon.
Unfortunately this means I have nothing left to accomplish in my life, so I could go any time now;)
Love,
JJ

When I am low on hemoglobin the protein on red blood cells that carries oxygen, I become extremely tired and I often joke to My beautiful Sara and my wonderful mother that I feel like a Vampire. So here I am trying to get at the blood.

Here is a picture of me getting some blood. I want to tell you all once again, how important it is to donate blood. I have received likely over 70 transfusions of blood products, which include red blood cells, platlets, and other clotting factors. Without these donations I would not be alive, they have literally saved my life. If you go and donate any type of blood products you will be saving a life. If you want to go a step further you can register for the bone marrow donor registry.

Here is Former Heavyweight contender Scott LaDeux. He fought some of the greatest champions, including the man, Ali. He was full of life and it was a great visit. My mother and my beautiful girlfriend Sara were there with me to enjoy this man who is full of life. He says that George Foreman hit the hardest, second only Ken Norton.
A special thanks to the old fat guy that wakes up at 5 every morning for my viking medallions.

Results of love

Hey everybody, well I managed to do it. Because of the love and support of my beautiful family, and the prayers and thoughts from you all, the anonymous gifts, the kind words, because of all these... i am now in Remission again. This means that they could not find any cancer cells in the bone marrow sample they took.
So, I will be going home tomorrow, though I am not sure where home will be because Sara and I are looking for an apartment.
Then three to four weeks later I will be coming back to the hospital and begin my transplant. It is weird to be excited for something that is going to make me incredibly sick, but it is the only treatment available that could 'cure' me.
Relish in this good news,
Thank you for your love,
JJ

Our Journey now Begins...this was the easy part, please stick with me, your love gives me energy.

Biopsy...again

Hey,
Yesterday I had another biopsy. Because of all of the narcotics I am on and ontop of that the pre-drugs used for the biopsy itself, I slept from 12 to nine at night!! And two hours later I went to bed...That is a lot of sleeping.

Early results look promising. The aspirate (liquid part) shows no leukemic blasts. This is very great, but it is not the whole story, that is written by the bone core.

I will let you know the results,
JJ

Strategic outpouring of love comes on worst of days

So, I received about 30 to 40 emails from people I didn’t know over the last few days. This got my mysterious stories heart a pumping...CIA...FBI...FEMA...AAA...PTA...NVCR, where could these people be emailing from. It is too early for my Jerry Springer Newsletter, I got the I hate Liberals and ten things I can do to stop them pamphlet last week, and My scholarly journal Ants and Us is not due until next month. Well I brave the possibility of a super virus shutting down Fairview entire computer system and started to open some up. Surprisingly, they all started the same way, "You don't know me but I got your email address from Linda and I have been reading your blog, you are the wisest human being in the world...ever, you have changed my life forever...blah, blah, blah." After thirty minutes or so of basking in the greatness of JJ, I usually try to find something trashy on the TV to bring my massive ego down to Earth...I've got a lot of work to do.
I guess for the first or second time I will try to be serious on this site. After a bout of twitching during my last chemo treatment, the fear of what these drugs can actually do to you was abundantly clear. The fear of what I might look like... or what weird ticks or twitches I will have...will I be up to 100%...will I be in a wheelchair? All became constant thoughts or daymeres.
Then I started to have pain. Pain in my legs, in my arms, in my ankles, knees, in my arms, shoulders, in my upper, middle, and lower back, in my pelvis region including my biopsy site. In you are in a hospital you are suppose to rate your pain on a scale one to ten, ten being the worst most excruciating pain you have ever felt. My pain has been consistently in the 6-9 region, so bad...really, really bad. As I was suffering through some of the worst pain of my life I felt alone and I often push myself into isolation, but just when the pain was at it apex, the loneliness it deepest valley, your emails pulled me back into reality. The love that you have all shown me and my family is truly amazing, especially those that support my mother.
Thank you so much and any love that give ourselves or give to each other gets passed along to others…at least I think so

Long,
JJ
Ps Thanks especially to the person that got me Gift Cert. to AMAZON.com…I LOVE BOOKS!!!!