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!!!!

Bad blogger...bad blogger

Ok, so its been awhile, I know I know I am sorry. And I know excuses are lame and often just plain lies but here are my excuses. I am having major computer issues and using there computer means that I have stand the whole time I am typing, and well frankly, I am a wuss and I can't stand up for more than 20 minutes or so. Also, I don't know whether it is due to chemo or due to the new and much higher amount of narcotics, but I am sleeping a lot...I am maybe awake for five hours.
Anyways, now my computer seems to be behaving (unless I just jinxed it) so now I can write sitting down. Also, I am getting more used to the narcotic and do not sleep as much. Well, I suppose since it has been quite a while since I have last posted, I should give some sort of an update. I have not gotten all of my results back from the biopsy, but they did say that the aspirate (the juice of the marrow) was low in cells and that none of those cells were leukemic. It does not say anything about what is in the core. We will get these results either today or tomorrow.
I also am experiencing a hell of a lot of pain. Consequently I am on a lot of narcotics, which barely lower the pain, but do make me feel spacey. There are times when I can barely move, other times where I cry out in agony, I have to wear stupid anti-embellism socks and well it just basically sucks. It feels like if its not one thing its another. Well, Sara and Laura just showed up so I must go, I will try to write more later.
Love you all,
JJ
PS I promise to be better about writting, even if I have to stand up.

Another Day, Another few dead blood cells

So, the point of my chemotherapy is to kill the cancer cells. Unfortunately, the normal cells look no different from the cancerous cells, well at least to the timy little chemical molecules, can you imagine how cute their little itty bitty eyes would be...ok, anyways...so, the chemo just kills all of my blood cells it comes in contact with. One consequence is that it kills much of my platlets, which means that I bruise easily, and I can bleed severly if I am cut, if they get too low, I could bleed spontaneously inside, like in my brain.
Two, It kills my red blood cells, these cells carry oxygen, so they give you a lot of energy. When I am low I can really feel it and I totally feel like a vampire...I do look over my shoulder to see if wesley snipes is coming to kill me, but then they give me a few transfusion and I feel great for a few days. If they weren't so risky I am sure they would open up blood bars, cause it is totally like a quadruple triple espresso.
Three, it kills my white blood cells, including the bad leukemia cells and the good neutrophil cells. Good when it kills the leukemic cells, bad when it kills the neutrophils. Neutrophils are our first defense against disease. Most people have 1.6-8.3 10^9/L in their blood, right now I am under 0.3 10^9/L...it is so low that they stop counting, it is basically undetectable. This means that I am extremely succeptible to illnesses like colds, and other such things, expecially respritory stuff. When I am out of my hospital room I have to where a mask and when anyone comes in they have to wash their hands with anti-septic soap stuff. This is perhaps the most dangerous part of my treatment. I must not get sick from something because my body cannot fight it, even a cold could kill me!
So, I already told you they stopped my treatment and that we hope that I got enough anyways, and now I must wait until my next biopsy which is on Friday, Sept. 23. The results of which will tell us where we go next.
Well, this is a little practical update. I hope you enjoyed it and I hope you all are doing well.
Love,
JJ

Simple message...simple truth.

Great picture of Camy and me...He is such a part of my heart. I love him so much. I didn't think I would feel so strongly about a nephew, but it almost feels like he is mine. I love it, when he says 'love you uncle jj'

Me and my beautiful nephew Cameron. I am giving him a big kiss and hug, he seems more interested in his daddy taking the picture.

The People's champion sleeping and dreaming about knocking out leukemia, 1,2,3....8,9,10!!

Real Self Portrait, me smiling before the treatments began...not smilin so much after the treaments began.

Attempt at a self-portrait, didn't work...or maybe it did??

Here is my bro Jason in my hospital room. He has been a source of constant love and support.

Its been awhile...

I am sorry that I haven't written anything in a while. For one, I am back in the hospital for the HD Ara-c treatment and my computer was not hooked up to the internet, and I would have had to stand up to write a posting, and that would have been too hard for me.
The last few days have been really hard. This treatment is really kicking my ass and in fact my doctors have stopped my treatment early for fear of permanent brain damage. Last night, during my treatment I started shaking and flinch without control. So they do not wish to risk damageing my premanently. In addition to all of this, I have been totally shot of energy, and my appetite is non-existent. Even when I try to force myself to eat, I can not eat very much, a few bites and then I get sick of it. I have been sleeping most of the day, but today I am getting two packs of red blood cells, so I should have a little more energy over the next few days.
I hope all of you are doing well. I will try to write more soon.
Love,
JJ
AKA Twitchy boy.

UNwanted comments

I am sure some of you have noticed odd comments, some about real estate about french porn (boy that must be exciting) anyways, I am not sure what to do about this but I will try to find out. For now I will just delete them as soon as I see them. SOrry.
JJ

Bag of Tricks

Well, I got the results of my biopsy this morning. Unfortunately the results were not what I wanted. I was hoping for 0% or at least close to zero. The reality is that the last two treatments didn't seem to reduce the leukemia at all. They stopped from growing more but did not reduce it. So I am still around 17-18%

The good news is that they are nowhere near the bottom of their bag of tricks. So, Tomorrow I will be heading into the hospital again to recieve more treatment. The drug that I originally took was under a class of drugs called Antitumor Antibodies. They now believe that this class will no longer work on my highly aggressive leukemia. The drug will be adminstered in a High Dose form it is called Ara-C or cytarbine. It is classed under Antimetabolites. To give you all some idea of what High dose or HD means, the regular dose is 200 milligrams/m^2/day (the m stands for your body area). I will be getting 2g/m2 (that is ten times the normal dose) and I will be getting this twice a day....YIKES!!
Well, there it is the bare stinky reality. I will allow you to process this for awhile and then I will tell you how I deal with this sort of news.

Love ya,
JJ

10th BM biopsy

Hey kids,
Yesterday I had my tenth bone marrow biopsy. I think I already described this barbaric procedure on this blog before, so I will spare you the details here. Everything went fine and now we have an appointment at 10am with Dr. Hammerschmidt to go over the results and talk about options.
Best case scenario is the results are 0% and we can go right to transplant starting next monday. Worst case I still have some blasts (cancer) and we have to pursue other options of treatment. There really are only two choices. High Dose Ara-c, which could potentially cause long-term and even permanent CNS (central nervous system) problem, including not being able to walk. The second choice is an experimental drug that only one other person in the world has tried. He did it here and is now going through the transplant, but still one person, yikes!!
The third choice I guess is to throw in the towel and chill until the big freeze comes.
I will let you all know what the results are and what we intend on doing.

Love ya,
JJ
PS I do have a picture that Sara took during the procedure I will put it up later today.

The Dark Places

Yes, I am brave, I am Strong, and I do not fear death. My mother's gracious words are dead (no pun intended) on. Humbily, I accept her opinion of me and the lessons I have taught her. Gratefully, I must acknowledge that I have learned these from many different teachers. I don't want to get all religious on ya, but most of these lessons I have learned from my gurus or Buddhist teachers, some of whom I have never met, in person that is. Though this next qoute from Thich Nhat Hanh can be seen as depressing, I read it and smile for I am liberated by its truth: "Breathing in and out, I am aware of the fact that I am of the nature to die; I cannot escape dying. I am of the nature to grow old; I cannot escape old age. I am of the nature to get sick. Because I have a body, I cannot avoid sickness. Everything I cherish. treasure and cling to today, I will have to abandon one day. The only thing I can carry with me is the fruit of my own action. I cannot bring along with me anything else except the fruit of my actions in terms of thought, speech and bodily acts."
In our country, most hide from death, we don't even want to discuss it let alone see it. We sterilize our funerals, we are not allowed to see our soldiers who have died coming home in caskets and it took a relapse of leukemia for me to really, fully comprehend the fact that this body I have is not immortal. Death is often seen as a failure, as the end, not as I see it-- as a continuation and, yes, even an opportunity for spiritual growth. But, you are so young...its not fair, I hear a lot, especially from those in the medical field. Yes, I am young and I would like to continue my life, continue to help others, but I might not be able to. I have loved my life, I have led a fruitful and hilarious life. Many of our greatest artists have died young. Rimbaud stopped writting when he was 17. Age is not important, what is important is how we live our life. The central question to any situation should be, if one wants to live a fruitful life, is 'is what I am doing helping relieve the suffering of others, or I am doing this solely out of greed or selfishness?' I often fail this test...way too often. I have not always lived my life to this standard, but I have tried.
I was supposed to talk about the dark places I go and I do go there, I reside there, but I learn there, I take it in and try to transform it, often I fail, but sometimes I don't, sometimes I am able to transform negative energy into positive energy. Now if I can just figure out how to turn coal into gold.

I must go eat lunch.
I love you all,
JJ-The people's champion & number 1 contender for the rock cubed championship

A Mother's Ramblings

Hi To All, Finally I have this author thing figured out thanks to Jason (blog name brother). It is early Saturday morning and I have been awake since 3. In the still of the darkness the nightmares are scary and reality becomes clearer without all of the static. My mind goes to places it doesn't want to go. Of course it is always there, but I get distracted with the responsibilities of life. But the truth is there is so much about this experience that is unspeakable. I have been astounded by the eloquence of JJ and his older brother Jason. I have been frustrated with my own inability to put into words how this feels-to try to say something profund that will bring some clarity. But alas, for someone who uses words to inspire others, to reach out to others, I am at a loss. I doubt that I have much wisdom to impart. Others who have walked this path before me could speak far more eloquently than my self.

But here are some stream-of-counsciousness thoughts because I seem unable to articulate my thoughts in any organized way....

JJ is one of the most intentional people I have ever met. There is a lot that goes on inside of him that is not visible...like when he learned to walk..(not once but twice because he badly broke his femur when he was 4) He just got up and walked one day...no lead up to it...just walked. Or when he learned how to ride a bike. He just got on the bike and rode it... no attempts, no falls with skinned knees. No...he just got on the bike and rode it. This was my first insight to the inner life of an introvert. We extroverts like to talk about it, describe it, engage people into conversations about it.... So having said that, it is not by accident that he titles his blog a "journey" and what an incredible journey he is on...and he is taking all of us on this journey with him. So many people who taken the time to visit this blog have commented to me how raw, how honest his reflections are. The fact that he has laid bare this experience for all of us is his badge of courage...he is not only taking himself to unfamiliar places, he is taking all of us who dare go to those places too. He is intensely private as he reminds me everyday. When the Mom in me takes over and wants to demand that he share every detail. The fact that he is sharing his journey with all of us is incredibly courageous for him. But there is something very existential about this experience because ultimately there are parts of it that he must travel alone. We can walk next to him, but he decides the path, the direction, how much/how little he chooses to share. Not easy for a person like me who thrives on being in control. Here's a thought: how much control do we really have? About anything? Just how we travel the journey I guess. When I become outraged at the trivialities of conversations overheard, when envy creeps in as I watch JJ's peers pursuing their dreams, when I witness others going about their lives without much thought about the monsters that lurk in the shadows who can grab you and change your life on a dime I have to take a step back and say to myself this is not a good use of my energy. It is what it is...there will be plenty of time somewhere down the road for reflection, truths, profoundity. This morning Bill and I found the key to our clock so we could wind it up. We celebrated. My first thought was.."This is a great day!" When life is so incredibly painful finding the key to the clock can be a huge blessing!

So when my shadow beckons I try to focus on the truths I have gathered so far...
Life is so damn unfair
Some people really do have more than their share (witness those in New Orleans)
Some people are born to greatness, some have greatness thrust upon them. As JJ's Mom I believe he has both.
This journey is JJ's legacy. He is asking all of us to open ourselves up so that we can be better human beings if he leaves us.
People have asked me "How can you work? How can you go on?" There is really nothing magical about it. We do what we have to do. I have a mortgage and bills just like the rest of you. I have work that needs to get done...so I do it just as you would if it were you. That's what we as humans do...that's all we can do. I have walked this path many times before. It is very familiar. All too familiar. But each time it has a nuance, a new truth.
And then amidst all of this are many blessings: A sweet, gentle spirit named JJ who has taught me things no one ever has, my incredible, courageous children, my life partner whose heart expands each day as he tries to support me and JJ, some life-long friends who hold me up, some loving co-workers, some good-old fashioned Norwegian fortitude (yah sure you betcha) a good therapist, and an inner knowing that somehow we will survive this and add more patina to our battered hearts.

Despite the terror that must lurk in JJ's heart in the middle of the night and the early morning wakings he somehow manages to make me laugh. He always makes our family laugh. And if this wretched disease takes him, who will make us laugh? Perhaps you have appreciated that wry humor as well in his writings. But let me remind all of you- he is so medically fragile, his prognosis is iffy and he is against the ropes (again a boxing metaphor) But the boxer in him has a few more moves and there are a host of us in his corner. God I hate this opponent. You can't look away for a second because it is ready to deliver a knockout blow. So we remain vigilant, we cheer him on, ...

"What can I do?" Dear, dear friends. We understand your helplessness. We feel so woefully inadequate at times ourselves to give you an answer. We don't know what to say. But for those of you who truly want to help here are some thoughts:
1. Donate blood in JJ's name
2. Donate gas cards for Sara (JJ's fiancee) because right now she shuttles betwen Eau Claire and here.
3. Buy parking vouchers for family members who need to be with JJ in the hospital. They are $50. for 30 days.
4. Buy JJ some Kit Kats. He loves them.
5. Get JJ anything chocolate. Sorry no nuts. He is allergic to them now.
6. Donate massages to JJ. Although he will probably be in the hospital this next week. I think they have massage therapists in the hospital. I will have to find that out.
7. Buy the most recent issue of Boxing Digest (can get at Barnes and Noble) I think he has September's issue
8. Donate phone cards for his hospital stay.
9. Get him gift certificates to bookstores. He is a voracious reader.
10. Post something on his blog.
11. Send him your love and encouragement (everyday if you can) via email Wouldn't it be great if he was overwhelmed with emails? Be sure to tell him he doesn't have to respond! (whoops I better check with im before I give you his email address.. . sorry :(
12. Send him cards: JJ Lehmann
14837 Crestview Avenue West
Rosemount MN 55068
13. Find a boxer who would visit him in the hospital and talk boxing..
14. Get Bruce Springsteen to visit him (when asked who he would like to meet he immediately said "The Boss." Let' s aim high!!!!
15. Get an autographed picture of Paul McCartney (real, not a copy) Again let's aim high!!!!
16. Donate money. JJ will have to move into an apartment or hotel post transplant for 2-3 months. This will be a fincancial burden to him. Remember he does not have a job and receives a small SSI payment each month. His family does not have the financial resources to underwrite this too.
17. Send him virtual love and hugs.
18. If you see him give him hugs (after putting on antibacterial lotion of course!)
19. Hug your loved ones everyday. Tell them you love them.

Open yourself to these thoughts...
20 Give someone the benefit of the doubt...one of my greatest lessons from JJ.....
21. Listen to the oppostion you may learn something... another lesson
22. Leave your own agenda at the door...sometimes it is better to be open to possibilities.. another lesson...
23. God is bigger than any religion...at least my God is and so is JJ's...
24. Life is a gift in grand and in minute ways..
25. Be inspired by JJ... be brave..be loving..be honest...be reverent...be amused..be ....
26. Do someone a favor...give them JJ's blog address...it will put their life into perspective

My love to you all. Linda (JJ's Mom) For not much to say I sure did!

Address Change???

Ok, After several suggestions that I change my address name from JJcancerboy to something else, I am willing to consider it, however, I fear that some people whom I have already told about this address may not be able to find the new site. Despite this fear, I am willing to do it, but you guys have to chose the next name...so throw out some suggestions as a comment to this posting and then we will vote...
If you live in Ohio, please do not vote...also if you are poor, black, jewish or any combination and you live in Florida your vote will not count, sorry not that I am bitter.

JJ
My suggestion...peopleschampion

Cancer Sucks!

Hello all,
I haven't written in a few, because I have been busy with family and I have been really tired the last few days. Predisone, a steroid that is used for a lot of different things, sucks to be on, but it sucks worse to be off. I helped with both my energy level and my appetite, both of which have gone down since tapering off of it. The funny thing is that if I get into remission and do the transplant I will be back on steroids in a few weeks. Up and down, up and down...it is enough to go crazy, but I'm not crazy clowns really are trying to kill me....

I do not have the greatest of all updates for you.

On Thursday we met with my transplant doctor, Dr. Miller. It was a long four-hour affair and I walked away with a headache and heartache. He told us that because my disease is so aggressive (as evidenced by the short relapse time, the inability to go into remission after the first four weeks of treatment, and amount of treatment I have already received) my chances of living without a transplant are zero. With the transplant, my chances of surviving 2-3 years are only about 20-25%. Each time something goes wrong, like if I am not in remission after my next biopsy, which is on Wednesday, my chances of survival go down. Despite this blow, we are pushing on and working towards the transplant.

If I do not go into remission, I will do a round of High Dose Ara-c, a chemotherapy drug. If this does not work the only option is an experimental treatment that only one other person has done…one in the whole world…luckily they did it at Fairview.

Obviously this is sober news, but the fight is not over, not even close. Send me your love, energy, and prayers and we will beat this thing together.

I love you all,

JJ

Love transcends everything

Saturday August 27th,
Our family had a pow wow of sorts today. We had good food, good company, and love. Throughout the day there was a common goal: to bring JJ love and happiness. We accomplished this goal I think. Yet, we also tried to accept the next few days, weeks, and months which we all must endure. I will let my hero aka cancerboy, aka JJ, aka Justin tell you all what was said and what that means to all of us walking the path with him. I can tell you the fight is not over and I don't know that it ever will be. Life is so funny, we try to do what is right, what brings us joy, and live each day without a thought of hardship or pain or cancer. Yet, these negative aspects of life are very real, very scary, and need to be addressed with candor. With this in mind, I, no, our family (whom includes everyone that reads this blog) needs the positive encouragement we have unselfishly given each other since the begining. Without each other no one especially JJ will survive. It is truly amazing that during the worst of times the best in people emerges. Empathy and the good will of people will never die. For the first time in my life I can truly say that I love people I have never met. What you have done and will continue to do for my brother is a debt I can never repay. Please know that you are the best of people, compassion is a gift, never stop giving it. I know in my heart what ever happens in the near future will depend upon the love we have all so evidently shown JJ. I challenge you to never stop giving that love, no matter what depths cancer brings us to. JJ has touched all of our souls and no matter what happens to him, use this gift he has given you, cherish it, never let it go, let him see it in you. My words only scratch the surface of the feelings we are all going through, yet they need to be said.
Forever in your debt---Brother

French Silk and the Chocolate Chips

Hi.
I just finished a big slice of French Silk Pie from Baker's Square...yummy.
Throughout this (understatement I) ordeal, I have been filled with many (understatement II) emotions, one that I did not anticipate feeling so much, and as a response to both positive and negative things, is Awe. Many things have awed me. Some simple, some profound, some terrifying, some joyful. Today, I had a healthy dose of both positive and negative AWE.

I am awed by the generosity every one of you has shown me; I am awed by your presence and by your love. I cherish you, but tonight, someone who I have associated with only on a professional level awed me. Tonight, I was awed by Jackie, my home-care nurse.

On Tuesday, as a aside, she mentioned that she and some friends were going to the State Fair, she casually threw out that she would buy me some Sweet Martha’s Cookies, TM. I said yeah a few (thinking 1 or 2 would be great). Tonight, after a long hard day at the (Doctor’s) office, which felt more like 12 rounds of boxing than it did a consultation, I was settling down for a bowl of Frosted Flakes, TM. Before the Strawberry Yo-J, TM (can’t have milk) was poured a strange Mini-van pulled into the driveway, and the doorbell rang (actually, it was more of a buzz), I went to the door, at 9:30 at night, and there was Jackie standing, silhouetted by the shine of the headlights, with a huge grin that only nurses have, looking like the Goddess Tara, holding out a bucket filled with still warm Chocolate Chip cookies. My God, I was floored…I didn’t even know what to say. Her friends, whom she went to the fair with were waiting for her in the car…she made them stop here on their night out to give me warm cookies! I am sure that significance of this is not lost on any of you, but let me elaborate on this awe-some incident of generosity and love.

This was not a family member, this was not a ‘friend’ in the usual sense of the word, this was someone who is paid to show me how to take care of the tube in my chest. My god, the love that this woman holds, the compassion she emanates is truly awe-inspiring. As if I needed further proof that nurses are the greatest people on earth.

As I face life and death simultaneously, it is good to know that love and generosity are alive, and that the power of compassion is limitless…

Electric Kool-aid

Greetings,
Today I was poisoned again...destroying the world to save it...by the old kool-aid day-glo danuomyacin. I went down smoothly, I even had a delicious donut while getting infused, but am now feeling a bit run down and a bit Nauseous and chemotherapied. It is hard to explain this feeling to someone who has never been through chemo., but you just feel like something is wrong...like you have been poisoned. It is perhaps similar to when a woman becomes pregnant and before she tests herself, she just kind of feels different, or after you eat that slice of pizza that you smelled and it smelled ok, but in reality had been sitting in the back of the fridge for weeks (you know you have done it).
Beautiful day again today...ahh Minnesota!

Love,
JJ

New Feature

Hello all,
It is a beautiful Minnesota day today...ahh, so this is why we live here!
You can now email a posting to someone or to yourself by clicking on the little envelope thingy.
I also hope that I fixed the picture thing...My mother, who keeps me quite updated on the status of my blog, sometimes with several calls a day...;), told me that she could not see the pictures. Can you now? I hope so, cause I am fresh out of ideas. Must contact blogmaster Tyler.

I know I promised to finish a series a few days ago, I am going to try to work on it today, but I also need to finish a few books I am reading. One is The God of Small Things by Arundhati Roy...oh my God, if you have not read this book, you must, I usually try not to recommend books, like I am some expert on fine writing, but she has stunned me more times with the beauty of her writing than anyone, but, of course, my beloved Faulkner. She is, however, the only person to make my heart stop, breath stop, and cause me to re-read a section for the pure beauty of the writing. Go outand buy this book, you will not miss the $13.00.

That is all for now, I must go shower, I stink. Gotta love chemo coming out of the pores. And Tara is wailing...again. Deaf (sorry, hearing impaired) cats are louder than full-hearing cats...scientific fact.

Love,
JJ

Oh, yeah, I just read that Pat Robertson called for the assaination of President Chavez of Venezuela...I am sure he meant that in the most Christ-like way possible. What would Jesus Bomb? As Stuart Davis, songwriter, says in one of his songs, WWIII, He would 'bomb your ass with love'.

ATTENTION: Usually the blog is posted down to up, but to show a continuity of pictures please start here and go down.

My friend Steve and I went to a Cambodian Buddhist Monastery yesterday in Hampton, MN. This is a stop on a worldwide tour of several very important Holy Buddhist Relics, including many Tibetan Masters and Relics of the Buddha Himself. You will see a picture later of me being blessed by a Monk. Here is a Stupa out in front of the Monastery. How Fortunate that I got out of the hospital when I did, they were only here for two days!
A relic, which are also prevalent in Catholicism, are usually either ashes from the cremated remains or actual body parts of dead spiritual masters, such as saints. They are thought to hold great religious power.

Here I am standing in front of a Statue of the Buddha in the Stupa.

This is Steve Standing in front of the Stupa which is in front of the Monastery

This is the Shrine Building in which the Relics were being displayed.

Here is a picture of the shrine behind the display table.

Here am I, mask and all, being blessed for a long life, good health, and happiness by a monk using Shakyamuni Buddha's relic. This was an amazing experience and has only re-energized my spirit, my devotion to Buddhism, and my passion to fight leukemia. Still in Bliss.

Before you walked around the table folks had the opportunity to be purified by bathing a statue of the Buddha. Here you see a monk doing this.

Here is a picture of the table and display that many of the Relics were on. People walked around it.

Here is a display of several relics of important Tibetan Buddhist Masters, including Marpa, Tsongkhapa, Longchempa, Atisha, Milarepa, Gyalwa Ensapa, and The First Karmapa. This will mean more to some of you than it will to others.

Home Again

Quick note: They released me early due to good behaviour. Actually, I bribed them with 45 cents and I threatened to start pooping in my bed if they would not let me leave. So, I am home at my mom's house, which if anyone would like to send a card or anything, the address is 14837 Crestview Ave. Rosemount, MN 55068. I know I know crazy people out there and all, but my cat has her front claws and they can get pretty sharp. Plus, we have five bottles of ketchup, which should distract them for awhile anyways.
I plan on finishing my series I started on facing decisions tomorrow so look for that. Also, tomorrow I am going to be blessed by some of Buddha's relics. And I think we might go to the Peguins movie and my bro is coming over. Big day, good day.

Love you all,
Free again,
JJ

wisdom from the lyrical scientist

Hey everyone! Tylers comment quoting Bob Dylan has inspired me to leave you with more of the "lyrical scientists" words. Words that not only do I find pertinent to JJ's current situation, but words I try to live by everyday. " I will not go down under the ground. 'Cause sombody tells me that death's coming round. And I will not lay myself down to die. When I go to my grave my head will be high. Let me die, in my footsteps, before I go down under the ground." To me these words do not mean that death is inevitable, but rather should be fought with every fiber, thought, and means at our disposal. These words hold so true to JJ because he could have given up during the fight of this horrific disease countless times. JJ has never given up this fight, and he never will. I think he has inspired everyone he has met and known during this fight, with his gentle courage, and passion for love and life. I don't know what anyone else uses for the definition of hero, but he has my vote any day of the week. My sincere thanks to everyone who has encouraged, visited, prayed for, donated to, and most of all loved my hero, my brother.

Biopsy news

Well all, I was hoping to come on and tell you that my leukemia biopsy results were wonderful and better than we expected. Unfortunately, quite the opposite is true.
We wanted the precentage of leukemic blasts to be under 10%. This means that less than 10% of the blood in my marrow would be leukemia (cancer). If this was the case, we would have moved on to the next four week stage of treatment. 20% was the upper range at which the prognosis would not be looking so good. Between 10% - 20%, they would continue with the treatment I got over the past 4 weeks.
My precentage is 17. This is higher than I expected, so I am a little irked, sad, disappointed, but not high enough to overly concerned. So, I am actually recieving another dose of daunomyacin (the kool-aid stuff, see below) as we speak. They are going to give me this dose and the another next wednesday and then do another biopsy after that to see where we are.
Something that has helped me to get through these difficult, and all too ambiguous, days (etc.) (besides my belief in Buddhism) is something I read in a wonderful book by my favorite living philospher Ken Wilber called Grace and Grit. This book is about his journey through the treatment and eventual death of his wife Treya from breast cancer. She came up with this wonderful way of approaching everyday and her treatment, deeply based on her experiences and on Buddhism. She calls it Passionate Equanimity. I plan on talking about this in a future posting, but just as a start, she defines it as To work passionately for life, without attachment to results. Chew on that, I hope it helps for all of you who love me. I will speak more of this later I promise.
I love you all,
(Warning boxing analogy coming on) Those this is a setback, I haven't even touch a knee to the canvas, just got dazed. Boxers are more dangerous when they have been hurt. Watch out leukemia!!!
JJ

How to comment

My mother has made me aware that some of shall we say her generation ;) are having troubles commenting on the website.
To write a comment, click on comment below my posting and there will be a box to the right side. Make your comment and push send? or post?

Thanks,
JJ

Quick Correction

For some reason it says that the last post was from mjensen, it was not, it is from Cancerboy. Still new to this whole blog thing.
JJ

Biopsy

My friends on the path,
Yesterday was the last day of my first 28 day treatment regmine. The first consisted of three different chemo drugs; vincristine, peg-asparginase and daunomyacin. I only got one injection (in my butt) of the peg-asparginase, three of the vincristine (it was stopped because it was doing too much damage to my nervous system, and all four of the daunomyacin. I have had all three of these drugs before last time. I also took prednisone, which is a sterioid (yes I am huge now), but I am starting to taper off from that today (prednisone is used for lots of different things, but one thing it does is to prevent some types of tumors from growing, which is a good thing (although leukemia is considered a 'liquid' tumor, solid tumors can form in certain places, like the pancreas).
Since it was the last day of the first stage of treatment, they also performed a bone marrow biopsy. Despite all of our advancments in medical technology, this brutal procedure is really the only way to how much, if any, leukemia is still left in my marrow.
The procedure starts with them giving you some premeds, versed and fentanyl (spelling?), one is pain blocker and one just makes you cool. Kind of like 'whatever you want to do, go ahead, baby'. After these have had a chance to take control, and it takes a lot for me, they flip me over on my stomach. They take to biopsy from the pelvis because it is the closest bone to the surface of the skin, thus easiest access. So they clean the site up the inject a whole bunch of lidocaine into the skin, pelvis bone and membrane surrounding the pelvis bone. After this has had a chance to take effect, they start the drilling. When I first heard this, I thought electric drill and imagine something out of the too many horror movies I have seen. However, it is long thingy that they almost corkscrew into my pelvis. They then pull out a core smaple of the pelvis bone. After this they aspirate the bone marrow, which means they suck out some of the juice. Surprisingly, this is the most painful part of the whole procedure, as my mother's hand would likely confirm. That is just about it, they clean me up, put a bandange on, and I am done.
I have not recieved any news yet. The full report takes several days, but my doc is going to look at some smears and try to get an early estimate to see where we go from here.
There are four basic things that can happen from here. I could have more than 20%leukemic blasts in my marrow. This is worst case scenario and highly unlikely. This would require a whole new prespective on my outlook.
Second, I could have somewhere between 10-20% leukemic blasts...this would likely mean more of the same drugs I am on now to get me to below 10%.
Third, I could have less than 10% leukemic blasts in my marrow, this is the second to best scenario. This means we go ahead with the second phase of treatment, called intensification. This is another four week treatment plan using three? different drugs, one of which needs to be injected directly into my spine!! Oh yeah, it is that fun! This would be the right path to go to go for my cordblood transplant.
Lastly, I could, possibly, have 0% leukemic blasts in my marrow. This, of course, would be great, but I beleive the treatment outlook would likely look the same. So, most likely I will be here for another 4 weeks.
If my marrow looks good I would likely start the new treatment today or tomorrow, I will let you all know the results and future as soon as I know.
I hope all of you are in good health and enjoying the outside.
I love you,
JJ 'the magical monk in 519'

Cheese curds ar good

Hey all,
I had a good day today. My mom, Bill and Sara took me foe a walk outside by the river. I, in the wheelchair and they pushing me with Al Baxter (my IV pole). Other than Sara running straight into the door in front of 30 or so people, everything went relatively smoothly.
Moe brought me some fresh chees curds and oh yes they squeaked an oh yes they were good. In fact, even though I am not really hungry I am going to get some, cause they are just soooo good and salty, nummmy nummy.

Love ya all,
jj

Poison to live to die

The second choice is rather more simple. It would be the choice to recieve induction treatment to give me several more weeks, perhaps, months and then wait for death to come. I can see the validity in this decision, if the prognosis was really bad. This is rather more straightforward in other types of cancer, such as a breast cancer. One can be put into stages. There are no such stages in leukemia. I was never told, nor could I be told that I am in stage 4 leukemia. This makes leukemia a bit of an elusive cat. You think you see its tail across the field and all the while its been rubbing against your legs. In other words, in leukemia, things could be 'going bad' and they make a dramatic turn for the better. This happened to me the first time. I was horribly sick and the situation looked to getting worse and then poof (I am sure it wasn't poof to those around me) and I started to get better. In the same vein, things could be looking great and a virus or bacteria makes it home and you die quickly. Or sometimes the 'strain' of leukemia you have is particularly virulent. Things can happen so quickly that planning with leukemia is nearly impossible. This choice also was never a real choice for me.

Opting for death

This choice...do not recieve any treatment and simply die within days...weeks, did not seem like an option. That said, there were many times during those first days that I knew I was sick again, before I told anyone, that those very thoughts came to mind. Relapse? Already? How could I go through a transplant and six months later relapse? It just didn't make sense. I was extremely sad. Grief took over me, a darkness I had not felt, though I have been depressed, at least clinically, most of my life. But, I thought things were going fine? All the tests...all of those painful biopsies said that I was 'cured'. How was this happening?
And then, then, I was just pissed. Who the f*** do you think you are leukemia? So, this is what it comes down to again, me and you...again. How dare you invade my life again. How dare you scare my mother and sadden my Sara, how dare you try to take Cammy's uncle away.
This tragic mixture of saddness, grief, and anger was, and sometimes still is, stifiling. Like an emotional, spiritual coma. The chances of beating leukemia again, after I was told that I fought so well last time and did everything I could last time, but 'failed', seemed impossible. I do not think that I ever could have chosen to just do nothing as far as medical treatment at that time, but my thoughts consistently came back to if not cured and not 50 more years, what's the point?
There were many times last battle that I wished for death...begged for death to take me...the pain, the despair was just far too great, too overwhelming. And there were times this time, when my chest hurt and my hips were starting to hurt...bascially when I knew I was sick again, but before it was confirmed by Dr. Moran and Monica, that most of my thoughts were, I cannot do this again. I would rather die than have to feel that sick again. And these thoughts, though not anywhere near dominant, still exist today.
However, this first choice of life/death was simply not acceptable to me at the time. I can now simply see that as the selfish option. I try not to place this judgement on others going through a life-threatening disease and this says absolutely nothing about my opinions on euthanasia (of which I will share later). But, for me, if someone finds out they have cancer or have relapsed and simply throws up their hands and says 'Lord take me'...one is, I was, purely acting for my own well-being. Selfishness is not the way to all-embracing love...it is the way to hurt and pain. For though I may have decreased what would have be and will be temporary pain, the scars I would have left in the hearts of my family and friends, and the confusion I would have brought them hardly seems worth it.
My love,
JJ

Living for death...Dying for life

When I relapsed my doctor, whom I still love, honor and cherish for all that he has done for my family and my self, told me that I might not have more than 6-8 months to live (which would be about January). At that point, my family and I knew that they could no longer do anything more for us. Leaving Dr. Moran and Monica in Boulder, and Dr. Brunvand was a terribly difficult and excruciating desicion, but one that came relatively easily. The pain on his face and the disappointment I could feel in his soul...the tears that fell from Monica onto my back as she drilled me for the last time (the biopsy that would tell us what we all already knew), reinforced for all us that we needed to go home. We needed to be with our family. At this time, I believed that I was going home to die...and this is still where I want to die. The soul seems to know where it needs to be when it finds itself distressed.
I never thought that death would be so much of a choice. For instance, I could have chosen no treatment and I would likely be dead by now. Second, I could chose to try to go into remission and wait for death to come knocking. Third, I could try for remission and do maintainence chemo and wait light to come streaming out of the tunnel, or I could go into remission and do a cord blood transplant.
Before we knew that I would be a good match for a cord blood transplant...I was went through several stages of death, or a least stages of chosing death. I would like to go through them, but I will do them individually, just try to keep me on track.

Please note that our choice to come here had nothing whatsoever to do with being disappointed with any doctor or nurse we have ever had. They are all a tremendous part of my heart and always will be.

Tyler and I during his visit today. It was really good to see him and he taught me all sorts of bloggin magic. Hence, this picture.

This is my first blog picture taken by Tyler about 1 minute ago. Yeah!!

Little info on cord blood transplants

What is Umbilical Cord Blood Transplantation?
Blood-forming stem cells circulate in the unborn baby and placenta and home to the bone marrow within hours of birth. Stem cells captured in the cord and placenta are collected and stored by Cord Blood Banks around the world. These stem cells are now available for transplantation, making transplant therapy available for almost anyone, especially for those with rare HLA types.

Compared to using an unrelated bone marrow donor, the use of cord blood for transplantation has a number of advantages:
Less need for a perfect tissue type HLA match
More rapid availability
Low risk of contamination of cord blood with common viruses
Lower risk of graft-versus-host disease (GVHD)
Easy to harvest without risk to the newborn donor or mother

Umbilical cord blood (UCB) is collected from healthy newborns at birth, frozen and stored in cord blood banks worldwide. Information about the cord blood unit is placed on a registry. If it matches a patient needing transplant, it can be shipped to University of Minnesota Medical Center, Fairview (formerly Fairview-University Medical Center) for transplant. After thawing, it is infused into the patient much like a blood transfusion.

Preimplantation genetic diagnosis is another exciting technique being pioneered by John Wagner, M.D., Professor, Department of Pediatrics at the University of Minnesota and one of the world’s leading experts on cord blood transplantation, to identify healthy sibling donors for patients. This may be used for patients with Fanconi Anemia, thalassemia, sickle cell disease, Hurler's syndrome, adrenoleukodystrophy and a number of other inherited diseases. It is being considered by families who have children with leukemia. It is important to consult with a transplant physician about this option to determine whether it is an appropriate option for the individual patient.

Umbilical Cord Blood Transplant ResearchUniversity physicians are researching a number of strategies in the transplantation of adult patients with cancers using UCB. Adults experience more complications after transplantation than children and develop more severe GVHD after BMT. UCB is an attractive stem cell source for adult patients as it may cause less GVHD and pose a lower risk of infection than unrelated donor bone marrow.

However, a major obstacle with cord blood transplantation in larger children and adults has been the limited number of stem cells in the cord blood collection. If too few cells are available, there is a greater chance of life-threatening complications. Dr. Claudio Brunstein, Assistant Professor, Department of Medicine, is investigating the transplantation of two partially matched cord blood collections from different donors to increase the number of stem cells transplanted to adult patients.

Another approach involves a lowerdose chemotherapy and radiation treatment prior to UCB transplant for patients who cannot tolerate the high doses of chemotherapy and radiation used in conventional transplants. These two studies show very promising results with high rates of engraftment and a low incidence of graft-versus-host disease.

Fairview-University Blood and Marrow Transplant Program
Affiliated with the University of Minnesota
Since the first bone marrow transplant was performed by University of Minnesota physicians in 1968, our program has continually developed new ways to improve outcomes of patients undergoing blood and marrow transplantation (BMT). Our physicians have performed increasing numbers of umbilical cord blood transplants since 1994, making our program one of the largest cord blood transplant centers in the world. In 2000, we performed the world’s first related UCB transplant using preimplantation genetic testing to ensure a perfect tissue match. We are now pioneering unique treatment strategies to improve the effectiveness of UCB transplantation, particularly for adults who are at high risk for complications after unrelated donor marrow transplant. Our patients are treated by a team of experts specializing in UCB, applying leading-edge research developed by University of Minnesota Physicians.

We individually tailor our care to meet the unique needs of each patient and family.
Dr. John Wagner, Professor, Department of Pediatrics at the University of Minnesota and one of the world’s leading experts on cord blood transplantation, performed the first cord blood transplant for leukemia in 1990 and has continued his leadership in the field since coming to the University of Minnesota in 1991. He established the International Cord Blood Transplant Registry in 1992. Wagner, who is also scientific director of clinical research of the Blood and Marrow Transplant Program and Stem Cell Institute, was instrumental in the creation of the Midwest’s first public umbilical cord blood bank in 1999 — a joint effort of the University of Minnesota, Fairview Health Services and the American Red Cross.

Claudio Brunstein, M.D., Assistant Professor, Department of Medicine, is leading research at the University of Minnesota that explores transplantation of two partially HLA-matched umbilical cord blood units from different donors to increase the cell dose — a factor shown to predict survival outcomes.

Comments

Hey,
I was told that one had to register to add comments. I believe that I just changed that. You should be able to just add your comments without too much hassle. I hope...
Sara is bringing a cord so I can hook my laptop up to the computer today. This will allow me to write much more. So, I will wait for that cord for an update.
I love you all,
JJ

PS Thank you mom...your love is amazing.

Three in one

First of all, more on this tomorrow, but I wanted to share with you all that we recieved very good news today. I was matched to two different umbilical cord blood stem cell donations. That means that I will once again be going through what is considered by most in the medical field around the world as the most god-awful procedure known to modern medicine...a blood stem cell (bone marrow) transplant.
It is hard to believe that even though I am feeling well right now, in what could be less than a month I will be on my deathbed sick, only to heal me...hopefully.

Love,
JJ

Dayglo poison and WD40

Well, JJ enters the realm of Blogging after an inspired phone conversation with lifelong buddy Tyler. He started one to document the pregnancy and birth and life of his beautiful girl Zoey.
So, I decided to commit myself to documenting my second fight with current welterwieght champion of the world...leukemia!!
Seeing as this is the first, and it is getting late for this evening primrose, well, not too late, but Mr. Faulkner is calling me, I will make it short and sweet. I am not sure what I will put on this and I am not sure how often, but if I do get a cord that can hook up from my laptop to the computer, I may be on her 24 hours a day...non-stop dry wit and dry heaves...moments of clarity (Death is but a fickle fart on the gastric bypass of the universe) and assorted pseudo-intellectual rambleings of a cancer patient on too much morphine, or is it not enough?
Ahh, life in the big city.
I got my last poison (I believe the euphemism of the day is chemotherapy) of my first phase of treatment today. That was Danorubicin, which is a nice organgish-reddish chemical, similar to various flavors of kool-aid, but for suredly, not something that should be going directly into the bloodstream. The things we do for love and life. I am hoping they let me go home next week, but I do start phase two of the treatment on monday so probably not, stranger things have happened.
Well, more later, me tired and sweating a lot. Pee is red what could be better, ahh, yes, MIRALAX...the throne beckons...