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