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