Soccer, Books and the summer of Chill

Hello all or maybe just Tyler,
I received the results of my six month biopsy and I and completely cancer free. This is obviously tremendous news, but is all the more better considering that I relapsed about this time after my first transplant. I got another compression fracture in my spine so I have to wear my brace for a few more weeks? months? ... oh well. Most days I feel pretty good, but some are very hard and I sleep through most of those days. Sara and I spend most days going to appointments or trying to keep our house clean, which mostly falls on Sara because of my back, we also watch a lot of movies and are really into the Sopranos. Mostly we have just been loving spending good time together, like cuddling on the couch watching the World Cup or reading together. This is something that we have not had for literally years. It is so wonderful to just be and know that you can try to relax.
I am currently reading three books (hey I have to catch up). I am reading The Poisonwood Bible by Kingsolver, How Soccer Explains the World: an {unlikely} theory of globalization by Franklin Foer, and Atlas: From the Streets to the Ring: A Son's Struggle to Become a Man by Teddy Atlas. I was only reading the first two because I thought I had lost the third, which I was 2/3 done with anyway, but a magical girl at Kowalski's found it for me.
I have also gotten into baking bread, I try to make all kinds but I am mostly intrigued by sourdoughs. So, I have two sourdough starters and have made a number of breads from the first one, but I am getting ready to try the second starter which I made myself.
I am not sure what this blog is transforming into. I assume I have lost most of my audience, but maybe a few will check it now and then and I just might have something to say left hanging in cyberspace.
Love all,
JJ

Update

Hello Everyone, Just writing to give you a quick update on JJ since it is very difficult for him to keep up with his blog right now. These past few weeks have been very scary times for all of us and for JJ. His pneumonia-RSV lingers. His time in the hospital terrified us because he needed a lot of oxygen. He spent most of those days asleep, unreachable by us. There were many days when I would visit when I never got to see his eyes, only his eyelids. He is home now...but very medically fragile. He has a complex medical picture...this has been his journey. It forces his doctors sometimes to scratch their heads....Without going into too much detail he is having bladder, kidney, graft versus host disease, nausea/no appetite issues. The fractures in his back continue to wreak havoc. Extreme fatigue...still needs oxygen. Most days are spent going to the BMT clinic for hours, visiting the pain clinic, seeing various specialists, getting more medical tests, only to go home exhausted and to bed. Very few hours when he is awake and then it is difficult to engage with him for any length of time. His quality of life is indeed compromised. But each day he gets up and moves on...each day Sara remains a loving, compassionate presence. She continues to have a huge caregiving role even though she is presently taking 3 classes.

It breaks my heart to see him suffer so much, but he inspires me beyond words...Despite his life, he still bakes bread at times, reads cookbooks, read other books, watches the Sopranos (I got him hooked ono that) plans for his next grill-off with his brother Jason. We, who love him, feel impotent at times in the face of this dreadful disease and its aftermath. But we hold onto the hope of tomorrow and are thankful for another day with JJ.

Please keep them in your thoughts and prayers...keep the love flowing in their direction....they both feel it.
If you feel moved:
continue to support them financially
send Sara gas cards
offer to come and visit JJ to give Sara a break (she really needs it right now with finals coming up)
send him notes or emails to encourage him
buy Sara fresh flowers (she loves them)
offer her a massage
buy them gift certificates to Target or grocery stores
.... all of this helps immeasurably....Thank you for your ongoing support and love, Linda (JJ's Mom)

JJ's email address: followthebreath@hotmail.com

mailing address:
4528 Bryant Avenue South #2
Minneapolis MN 55419

RSV

Hello Everyone, Just a quick update on JJ. He has RSV in both lungs. RSV is a viral infection that is often present in a lot of us when we have a cold but is undectectable. However, it is particularly virulent on medically compromised patients (like JJ). He is presently undergoing an aggressive treatment which includes pumping a white mist directly into his lungs. He has to wear a mask for 12 hours a day for 5 days for this procedure. They are also transfusing him with blood products that help to fight RSV. Yesterday he did not feel well at all and slept most of the day. We are disappointed that the progress he seemed to be making has suffered with this latest wrinkle in his recovery from transplant. It is excruciating for all of us to go back to the BMT unit at the hospital. We worry for him. His balance, strength, coordination, memory problems, continuous tremors concern us. Please keep him in your thoughts and prayers. Our hope is that his body will respond to the treatment and he will be able to return home soon. There is a bright spot in all of this-- his bone marrow has grown back 50%, no sign of leukemia and butterfly seems to be holding on. Yay! But his journey is long and treacherous. He is still very medically fragile. He has now been on disability for almost 2 years with no end in sight for him. His outer life is small, but his mind is expansive, his heart is full of love to give and love received from all of you and his dreams and life energy remain strong. And that dear friends, speaks to JJ the man. The man I am blessed to have for a son. Much love, Linda (JJ's Mom)

Hospitalized

Hello Everyone, JJ was hospitalized on Sunday with pneumonia. We hope this stay will be short. It is very disheartening for him and for all of us to return to the BTM unit again. Despite this, his spirits are pretty good because he knows they can provide the care he needs right now that he could not receive at home. Sara, JJ and I took his nephew (my grandson) Cameron to the MN zoo on Saturday to see the baby farm animals. It was a delightful day that ended with a small family get together to celebrate JJ's 29th birthday. We are thankful for this time together just hours before he was hospitalized. This latest setback punctuates for all of us how tenuous his overall health continues to be despite his slow, steady progress toward health. He does not have access to the internet right now but keep him in your thoughts and prayers. If you like, send hm a post and hopefully he will see it soon. Much love, Linda ( JJ's Mom)

Prayers

Thank you to all who came to our wonderful dance. I intend to write more soon, but I wanted to get the prayers that I recited on the blog as several have asked for them.
May all beings be filled with joy and peace.
May all beings everywhere,
The strong and the weak,
The great and the small,
The mean and the powerful,
The short and the long,
the subtle and the gross:
May all beings everywhere,
Seen and unseen,
Dwelling far off or nearby,
Being or waiting to become:
May all be filled with lasting joy.
Let no one deceive another,
Let no one anywhere despise another,
Let no one out of anger or resentment
Wish suffering on anyone at all.
Just as a mother with her own life
Protects her child, her only child, from harm,
So within yourself let grow
A boundless love for all creatures.
Let your love flow outward through the universe,
To its height, its depth, its broad extent,
A limitless love, without hatred or enmity.
Then as you stand or walk,
Sit or lie down,
As long as you are awake,
Strive for this with a one-pointed mind;
Your life will bring heaven to earth.
Sutta Nipata
Buddha's Discourse on Good Will

By the power and the truth of this practice,
may all beings have happiness, and the causes of happiness.
May all be free from sorrow, and the causes of sorrow.
May all never be separated from the sacred happiness
which is sorrowless.
And may all live in equanimity,
without too much attachment and too much aversion,
And live believing in the equality of all that lives.

There you go...
JJ

Acupuncture

As part of my pain management program, due to my three compression fractures in my spine, my nurse practitioner decided that I would benefit from acupuncture. Now most people I meet say "Well, you should be into this stuff because of your Buddhism stuff, right?" And I say, "um, actually no, I am quite skeptical about this stuff." Now, granted acupuncture is nothing like crystals or pyramid therapy or something like that. It has a long history and is accepted as a valid form of treatment by most of the top hospitals in the US. Knowing this, I said yeah I'll try it.

I went to the first session, not expecting too much, afterall I have been in pain of some kind for the last two years. So , I laid down and they started putting the needles into my ear, head, back and hand. The session lasted 20 minutes and for those 20 minutes I was completely pain free. It was amazing! Granted the rest of the day and next the pain increased, but since I have been using less pain medicine and my pain has decreased substantially. I truly believe that this is due to the acupuncture treatments. If you are in pain and are thinking about trying, do it is awesome.

That's all I got to say and I hope you have a lovely day.

Love, JJ

Its been a long time...

What is wrong with me...this is supposed to be a journal for me and a peephole for you all into this crazy journey I am on and I have been silent for some time now. I really have no excuse so I will only say sorry. I say sorry as much to myself as I do to you. Well, I will try to tell you some of what has been going.

In the last month, we have been frantically trying to get this dance together...thank you to all that are helping...it should a very fun time. The music is going to be great...the food beautifully prepared by my favorite chef (besides Alton Brown, of course), my brother Jason, is going to be awesome. If you are on the fence about coming...take a chance and go for it...I promise you will not regret it. Danceing your heart out to the old stuff will be worth it alone...hell the food is worth the price. Come on now....meet me there.
I have been feeling pretty good, but a few weeks ago I tried to pick up a box that I had no business trying to pick up. You see, when you spend so much time in the hospital, one loses a lot of muscle and hence strength...So, I picked up this box and hurt my back. Well I thought I just pulled a muscle...no big deal, right...well it kept hurting and a few weeks later I asked my doctor if I could see the pain clinic. I went there and they took an X-ray of my spine and it turns out I had been walking about with three compression fractures in my vertebrae. Well, I am now on the proper pain meds and I have a lovely $2500 back brace called a TLSO for the parts of the back it covers, the Thoracic, Lumbar and Sacral vertebrae. Here is a picture of it: [NOTE: I have a picture of it, but I cannot find my camera base to put it online, ugh...I will put it on when I find the base.] Luckily I do not have to wear it to bed, but for those of you who come to the dance you will get to see it live and in person. Unfortunately, it is going to seriously hamper my moves on the dance floor.
Other than that Sara and I have been seriously enjoying our time together at our apartment. It is so nice to be able to snuggle on the couch and watch bad TV. And good movies.
Well, that is about it. I will try try try try to write more and more often.

I love you all and I hope this and tomorrows entry will pull some of ya back to my blog.

Love,
JJ

Announcement

First, I just wanted to say hello. Sara and I had a good day today. Our 4 year anniversary is coming up here on the 21st...but because I am too exhausted most of the time, we had to divide our date up. To make a long story, short, too late...we went to a movie for the first time together since we lived in Boulder, CO. We used to go at least once a week.
We saw Matchpoint, Woody Allen's new movie. He is my favorite director, so it is not hard for me to like a woody movie, but I loved this film. It was quite unlike anything he has done before, well for one it was filmed outside of Manhattan (at least the story takes place outside Manhattan). Anyways, I could go on, but it was awesome. Now that I got the movie buzz, I want to try to see all of the movies up for best picture and some of the actor/esses, director...that sort of stuff before the academy awards...I try to every year, we shall see.

Here is the reason for this posting:

You are cordially invited to a

Benefit Dinner Dance Fundraiser

For JJ Lehmann and Sara Jensen

JJ has been unable to work or go to school since he was diagnosed with leukemia in May, 2004. Sara, as his caregiver is also unable to work as she cares for him. They need all of us who love and care about them to help with their living expenses.

Please join us on

Saturday, March 25, 2006

5-9:00 P.M.

Hamline University

Sorin Hall

Directions on back

Dinner served at 5:30 P.M.

Dancing begins at 6:30 P.M.

Music provided by: Generation II (Big Band)

Silent auction/ Casual Attire

Suggested donation $25.00 per person

Children under 12 donation

If you cannot attend,

a donation is still appreciated.

Directions

From East or West—Take I-94 to Snelling Avenue.

Go North to Englewood Avenue, Turn Right.

Sorin Hall is the First building on your left.

From North—Take Snelling Avenue south

To Englewood Avenue. Turn left onto Englewood Ave.

Sorin Hall is first Building on your left.

From South—Take I-94, follow directions above.

Love,
JJ

Butterflies, cake from the pan, Sara asleep on the couch

These are a few of my favorite things...I hear Mr. Coltrane blow out.

After much debate, speculation, pondering...the mystery is over. The cord that has engrafted is the cord from the girl (we call her Butterfly)...She was born in St. Paul, sometime, somewhere, This is all I know of the little girl that is saving my life...giving me more time with all of you in this beautiful world. Not a few minutes old and already she is a hero, already she has done more than most accomplish in an entire lifetime. Her gift (which is, of course, as much from her mother, lecture [please, if you are pregnant and your doctor talks to you about saving your cord blood and such, please do NOT do it. Please donate it, this precious blood is needed now, by many people...you will directly be saving a life. Not only is saving your own cordblood extremely expensive, but it stagnates research that could be done while saving a life. Every transplant that we do with cordblood, we learn and we have a lot to learn. The research/data/insight gained by your donation(even if the recipient dies) catapults our knowledge about cancer that far outweighs any benefit you or your child could gain from keeping this gift...please, please, please donate your cordblood...please; lecture over] is truly awe-inspiring. Her cells did not care that I like Bruce Springsteen more than I like Bob Dylan, she didn't even ask what religion I belonged to, if any, whether I was black, or gay, or republican. She just said, "here, if you need, I can help". Man, imagine, if life really were that simple. What if every thought was for others. What if we centered our life around just helping others...not oh you are having a hard time, let me teach you something, or pray with you, just you need it, I got it. I am not pollyannish, or at least not trying to be, but just thinking about this gift, reminds me that it really doesn't matter...you know, not really. It doesn't matter that I have these core beliefs that help me to navigate my world, so that I can bring some happiness to myself and everyone else, that I can. All that matters is love, right?

I think we can all get along. I have been very unoptimistic about this world. Both in a very personal sense, but also in a more universalistic/global way. I looked out (do look out)and see much misery, much of what is wrong. Right now I could list a hundred things, that are worrisome to me...problems, real problems that need to have real solutions. From the miniscule (I spilled some cake on the keyboard), to how Sara and I have to constantly be vigilant about my medications and how they affect my body and moods, to my family going through rough times, to my best friend Steve strecthing his heart thin over his children, to living in country at war that does not seem to be stopping, but expanding, what does this mean? how does this change our basic principles? can we change them now? what is America?, to the multiple clashes of civilizations in every corner of the world, that touches every aspect of humanity...I could go on and on, and this does not even include the interior realm of existence.

I have never been a pessimist...yet I have never been an optimist...Sometimes I think George Carlin got it right when he said a cynic is just a disheartened or disillusioned optimist. But there are moments, even amongst the pain, the gruel, the hatred, that love shines through, that glimmers of hope shine like a flash of lightening through the darkness, that jar me back into reality...NO, there is goodness, the nature of humans is to be good (again, what does that mean). A while back, Barbara Walters had this special on heaven. In it she examined what heaven means to many different people, from scientists, to Jewish people, to Muslims, to various strains of Christianity. She also interviewed His Holiness the Dalai Lama. I will not go into his discussion, but one of her questions keeps coming back to me. Despite the obvious conflicts when discussing a topic like heaven in a Tibetan Buddhist context, she asked him whether he thought the world was closer to heaven or to hell. Most religions I know of, well most of the major ones, speak of this time as being particularly far from where we want to be. Glaring example, the Fall, others-Hinduism speaks of the cycles of existence...again from heavenly to degenerate. This is true to Buddhism as well. There was a time when enlightened beings flourished and just being hearing a syllable from these beings one could instantly gain enlightenment. When she asked, I assumed he would just say closer to hell, but he didn't! With the confidence of a Buddha, without a moment's hesitation he rang out, "oh, much closer to heaven, much closer." Wow! I keep coming back to it. Much closer, much closer...I can hear my teacher's voice clearly! If my teacher can look out on our world and conclude that we are 'much closer' wow, why can I not? Are we looking in two different places? No. I am not using my full sight...I am using JJ glasses. Well, now I got a new pair of eyes.
Butterfly.

Ahh, Butterfly.
Butterfly gave me Tuesday Febuary 7, and I hoping the 8th. How do you thank someone for everyday. Everyday, I can chose to use love or chose to use hatred, I can chose to be selfish, or I can chose to be othercentered. I can chose to use my precious human existence or I can squander it. What would you do with such a gift? Butterfly is not putting any restrictions on the use of her immune system, nor is she gauranteeing me anything. I did not have to sign a contract saying that I would smell the roses and never be mad or sad, I did not have negotiate a certain amount of time that I could use her gift. I am going to make many mistakes, everyday. Today, later I will likely snap at my beloved Sara, perhaps we will get into an arguement. I may hurt my mother by something I say. I might die. The gift, butterfly has given me is this opportunity. I can only hope that I can bring more happiness than sorrow; more love than hatred; more compassion and more impartiality.
It is late and I am falling asleep at the computer.

Love,
JJ
PS Here's to hoping that this makes sense at all. I am too tired to read it.

And the winner is...

Well,
Sara and I know who won. Which cord took...but we ain't telling.
Just kidding...it was just a busy day and such, and time flew and I haven't even told my mother yet, so when she knows I will let you know.

Love,
JJ

Choices, destinies, improvement, life and death are so close together.

Family and Friends,
Loved ones, Dharma Friends,
Teachers, Brothers and Sisters,

I am home.
I got out of the hospital on Tuesday night, the 31st, this is a tremendous accomplishment. I am have been so thrilled to be able to sleep in my bed with Sara and Tara, take naps on my couch, read when I want to read and do/go where I want to. It almost feels like freedom, but is it. I still get angry, bored, irritable. I still watch TV and don't read enough...I still have to go to clinic...I still worry about my blood counts everyday...am I cancer-free, yes, is my life free of cancer?? It feels as if the acute has become chronic, but the chronic is still acute. This is not the end-game.

Far from it...but closer than I have been in a very long time. ER is on now. A tremendous episode about choice. Who ultimately has a right to choice? Different stages of human growth, both on a cultural and personal level, would say different things...some might say a scripture is the only answer, some say no-one but myself has an input, some say both; and there are likely millions of other answers. I try to use my core beliefs, which spiritually are Buddhist, but infused with science; my family's love; and what my teachers, all of you wish.

This last week has been a very awkward and difficult week on the BMT floor. For one, I got out. But several people that have grown to be major parts of our lives have died or gone on to hospice. Some our age, others older with children. One, we all felt was stable and 'doing well' died in 24 hours. The path or dao is wide and spacious, filled with mystery, questions; paradoxes to be lived in, even concrete turns to dust; I am a mountain, un-moved; I am water flowing; death does not scare, neither does life; choice is frightening; will I choose correctly, can I not if I am being authentic to who I am?
Emptiness is no other than Form; Form is no other than Emptiness.
Many choices to be made, pondered over, answered wrongly/correctly/ sanely/ ignorantly/ attaching to pleasure/ skating away from pain/wanting pride/ running from shame.

My family chooses to love me, I choose to accept their love. Is love enough? No, compassion is necessary. The choice to take all of the love that you have ever felt for oneself, another, from oneself, from others...take that and transform it to help other people...NOT how we, you or I think, is helpful, but what does help? How do we know what helps...Is their feedback? The central problem. Like getting a grade in school...What is the feedback necessary to know what we do helps. 'It made me feel good doing it'...clearly this is not the right answer, this is not compassion. Clearly Buddha did not act live for himself, clearly Jesus did not either.

Please know my family I am comfortable in my path, my dao; I am clear that I have truth in my life and that I attempt to live by that truth. However, this in no way supersedes or subcedes your truth, nor is it wishy-washy...I am clear about our different levels of consciousness, clear of where I am on this path.

Well, enough rambling...I am tired and this is quite long enough.

I love you all,
JJ 'The People's Champion'

Today is the Chinese New Year, the year of the Dog...well for our new year party (on the 1st of January) I, of course, had to stick around here, so my mom and Bill came out and Sara joined us for a pretty serious game of scrabble. Interrupted by the whole ball dropping thing. Good game nonetheless. This is picture they took of me after I passed out from all of the Sparkling orange juice...I'm not ashamed, we've all been there.

The babies are growing, and I feel blah

We have evidence that I have engrafted, but we are not sure which one is taking over yet. My WBC's went from from 1.3 to 4.6 in one day. I also have a rash due to Graft versus Host disease. We are trying to treat it with just sterioidal creams. We hope this is the extent of the GVHD, that I will get.
I woke up with an acute pain in my abdomin this morn...if we can figure out all of these pains and such I should be able go home sometime soon.

Love,
JJ

Prayers coming in.

I took this picture the same day as below. It reminds me that my Christian friends and family member's prayers are pouring in to heal me. Thank you.

Back inn the saddle again

At least for now.
Must live moment to moment, ah, yes, Buddha, was right. The network lady came today and we are back online. For now at least, but, now is all that matters. I hope everyone is doing fine.
I am in a bit of pain because I had a Bone Marrow Biopsy and Aspiration done at noon today. I think I have described this procedure before, so I will not at length here (basically, the numb yourskin above the pelvis bone on and then numb the underlying bone. They then take a core sample out and then suck a bunch of liquid (marrow) out) they do this now to see where in the engraftment stage I am at. We should get some results in the next few days. Regardless of those results, I am starting a new growth factor today to charge up my marrow and urge to make new stem cells and hence new bloodcells.
Other than that, I have been doing fairly well, in fact, better than I expected to be feeling. I am still having a lot of pain, but pain is always temporary so no big deal (of course, narcotics are also helping with that.) They are not why I am experiencing pain, it is either my gall bladder (which amazingly not enflamed at the moment, or just staying in bed too long. At night it is intense, but no worries, like I said it always passes. I have also had a cough since christmas that does not seem to be getting any better (hard to without an immune system) but does not seem to be getting worse either...although today I am coughing more than the last few days.
Some tremendous things have been happening as well. My beautiful Sara had her first day of classes today at the U of M. She is taking three courses Statistics, Abnormal Psychology, and Patho-physiology. I looked through that book...gross pictures...although I have had some of those diseases before. So, i guess I am kind of gross too. Also, my brother John stayed the night the other day and we watched a movie together. He got to experience what it is like to live at a hospital, which is bad, but I am sure he appreciates how hard this is now.
Lastly, my Buddhist practice has never been better. For the first time in the nine years or so I have been a Buddhist, I am ready to for a Teacher-student relationship. This relationship is crucial for the Tibetan Buddhist practitioners, and, although I have had many teachers in my life, this relationship will be different. Now I need him to take me on as a student. This will likely be a long process, but I am very excited and I have never felt so good that this is the right religion for me. I have seen clearly how Buddhism helps me, by how I interact with other people.
I hope you liked my little update. I love you all and you make me strong. Send prayers for good results to the biopsy.
Love,
JJ

Wristbands

I am on the hospital computer (against the rules) because my comp. is being stupid. We have new batch of wristbands (see below) if you want one they are $5, send an email to followthebreath at hotmail.com and I will send them right out to you. If you have not gotten what you ordered yet let me know by email and I will send them out.

JJ
SHHHHHHH

PS I am shut down for a few days hopefully no longer than that.

So, for those who don't know Minnesota had been experiencing something two or three weeks without sunshine, seriously none, all clouds no sun. Finally, the sun came out and I managed to catch it on its way up.

Christmas in the Hospital

Here is our Christmas tree in the hospital room. And the load. We had a great time! Another Christmas.

Christmas in the Hospital

Sara and I showing off some new digs. God, what legs...sorry ;)

Christmas in the Hospital

Here is a picture of Sara's sister Elsa and her boyfriend (Scott) receiving some drums from Joel (Sara's Dad). The silly hat is actually the base of the drum, but I think it looks better on Scott.