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!!!!
Thursday, September 29, 2005
Tuesday, September 27, 2005
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.
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.
Thursday, September 15, 2005
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
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
Wednesday, September 14, 2005
Tuesday, September 13, 2005
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.
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.
Thursday, September 08, 2005
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
JJ
Wednesday, September 07, 2005
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
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.
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.
Sunday, September 04, 2005
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
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
Saturday, September 03, 2005
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!
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!
Wednesday, August 31, 2005
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
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
Tuesday, August 30, 2005
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
Sunday, August 28, 2005
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
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
Thursday, August 25, 2005
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…
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