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Treatment Experiences
(Updates)



 
 
 
 
 
 
 
 

Update 1
March 7
Well, one week has passed in treatment.  I have had 5 radiation treatments.  Once the coordinates of what they want to zap are configured these are 5 minutes. I have had one chemo cocktail (stirred not shaken a la Bond).  This takes a few hours.  So far no bad reactions from either. They are clear that it could get. Each week I will have 5 zaps and one drink.  I know how to have a good time. 
I had a bone scan looking for the little nasties and none were found. I had a PET scan looking for the little nasties in soft tissue and none were found. These two results are very positive and encouraging. These two procedures were not fun and not recommended for vacation experiences unless you like tight places were you can breathe.
The sisters from the convent have banded together to make sure I get to my treatments.  So very kind of them. Kathy has been a pillor of strength while still having to teach and go to school.  A real blessing to me. The staff at the clinic are simply incredible.  My radiation doctor Xin Wang (no, not Irish) is a lovely man with a great sense of humor.
So, here we are.  I am constantly exhausted and some days are better than others.  Sleeping is some times a problem.  Next week should be more routine.
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Update 2
march 15 2003
Got my tattoo.  For two weeks they have been putting markings on me so the machine could line up for some serious zapping.  The marks were crosses and diamonds and squiggles and whatever.  I was beginning to look like an astrological chart.  Today they figured they had it right and gave me three pin point tattoos.
It has been a strange week.  For much of it, it was definitely on an upswing.  Subtle but true improvements.  Thursday evening was a loser and continued for about 24 hours.   Feeling much better this morning, much due to loving massage administration by Kathy. Those who go through this alone, my heart goes out to them.
Still continually exhausted.  This battle royal between the foreign inside me and the assault from outside is wearing.
So, the freight train that I was lashed to the front of, the comet tail that I had grabbed has slowed to a routine for the next 4 weeks.  I asked Dr. Wang (pronounced WONG, not Wang) is they had a program that converted PET scan to 3 dimensional so I could do some imaging and we will go over that this coming week.  Have thought of using some of my hynopsis/imaging skills to work at the clinic when I am on the other side of this.
Spring is here.
That is a help.
Best to all.
Love
John
******************
Update 3
March 23
Three down, three to go.  Weeks of treatment that is.

Monday morning at about 2:30, I awoke hearing and feeling a pop in my chest,  my breathing became easier.   When I mentioned it to my nurse Carol later, she said some other person had also had that experience. (Speaking of Carol, she is off to Guatemala for a week and a half to help highland Mayans, sheeez, here I am, I mean where are her priorities.) (And while, I am at in Dr. Wang took his kids to Disneyland while my back was turned so I couldnÕt thumb a ride).  Oh, the abandonment of it all.
Tuesday, before running off to fun and Florida games, Dr. Wang showed me my tumor.   On the computer screen were four views.  The lower left view took up 2/3 of the screen.   It was a front view of my chest from the PET scan (minus of course the massive muscles).  It showed my lungs, heart and the THING.   The view immediately above was a top down view and one next to it was a side view.  I could scan up and down the large front view and see the tumorÕs effects on the various structures. It looks like a fat carrot a little off center to the right.   The fourth view was from the CIT scan and was three dimensional.  By moving the cursor I could rotate the view. Incredibly impressive, would have been even more so if it wasnÕt me I was looking at.  It is clear why they went in to emergency treatment.  Whew.  These were old scans, so really donÕt know the present status of the THING.
There is a pattern that I am seeing.  Monday, Tuesday and Wednesday go okay.   Actually, after chemo on Wednesday is when I feel my best (may order a keg of the stuff for later).   Later Thursday afternoon, things start getting rough and Friday is just not a fun day.   Saturday I start getting better.    My best time any day seems to be between 2 and 4 in the afternoon.  I use this to do whatever administrative, shopping, library, tennis, nascar preheats things I need to get done.
They also told me this week I have a couple blood clots because of the squeezing by the THING.  They were talking about rotorotor but decided on blood thinner first .  Since they have known about the clots from the firtst scans, I figure their thinking is, Òwell, he made it this far, letÕs try this.Ó  Bring it on suckers, is what I say.
Kathy continues to be wonderful support. We really enjoy the hiding out on the weekend.  The nuns, the Angel Patrol, as they like to be known keep getting me to treatment.  Dan, my neighbor, took me one day at his request.  Next, weekend, he and I will put the rototiller on the big garden tractor.  Spring is here.
They have warned me that the next three weeks will be the roughest physically with serious sore throat (feeling a little of that) that will require meds along with other stuff to keep food systems working. Exhaustion is still the main thing.  At times, I sit like a cat fish on the bottom of the river just breathing and digginÕ the world.
Take care.
John
***************

Update 4
March 29
Well another week.  Five zaps and a 2 hour venous gulp.   Okay week but I am really starting to hate Fridays.   After this is over with, I am removing them from my calendar.  Sure, you think this is an unreal approach.  I been tasting reality and have decided to return with great glee to whatever delusions I can manufacture.
Talked the physicists who does the computer scan work and may have a CD with a frontal view of my glorious physique on Monday.  It will be a jpg. that I can email to those who want a picture of me.  Using photoshop, I can even sign it.
Also had another CIT scan this Friday.  Originally had been told theywouldnÕt do another until about a month after treatment was over.  I am taking this as a positive sign and am cautiously optimistic about the results which I will know Monday.
The head rushes have slowed to only a few.  In the beginning, I would get head rushes when coughing or even just standing up.  In early years of my life I would have paid good money for these.   I think the blood thinner is helping.
Take care,
John

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Update 5
April 5

The good news is that the CIT scan of last Friday showed a reduction of 15 to 20%.  They are now zapping me from different angles and are extending the length of treatment to 7 weeks.  What Dr. Wang said is the Òlonger the betterÓ.  So if, I can take the extra week, then good.  It will depend on how my body reacts to this new ÒabuseÓ.
Also good news:  When I saw PaulÕs (my long term physician) reaction to the Xray and the first CIT scan, as well as every other physicians reaction, I didnÕt think I would make it to 60.   Prior, I had thought it was cool to get to 60, now I think it magnificent and it is due to a lot of caring and love by friends and strangers.  So, yippee, Monday, I am 60.  I have decided to be 60 for a decade so when asked how old I am, my answer might be, ÒThis is my fourth year of being 60.Ó
And it is also a celebration of decades.   I have been in Minnesota for 30 years, lived off the grid for that long and done therapy professionally (and for money) for 20 years. 
As for my picture, I am afraid some, in my attempt to be funny, may have thought it was a picture of my chiselled, virile face.  Nay.  It is a picture of my tumor.  What I had them do was give me a frontal shot from both the PET scan and the CIT scan.   I then created a composite in color that shows the tumor sitting in my chest in relationship to my lungs and heart.  It is not pretty.  My plan is to make T shirts and sell them as cheaply as possible.  Maybe I can stop someone from going through this.  Above the picture it says, ÒSmoking Made HardÓ and below, ÒJohnÕs TumorÓ.  I will send anyone this jpg but only upon request because it isnÕt pleasant.
The guy you see with the pompadour and DA Elvis hair style may be me.  I think I am starting to go for the Telly Savalas look, so I order both an Elvis and a Jerry Garcia wig for variety. 
Well, I made it through another Friday.  Damn they are hard. 
So take care.
Love
John
*************************

Update 6
April 13, 2003
The good news - Dr. Hauge, my lead doctor, said my tumor had gone down 50% after looking at an Xray taken Wednesday.
They didnÕt give me chemo on Wednesday because my blood count was down, this is normal evidently.  It was a relief because the radiation has started to really hurt.  On Tuesday, I started taking a narcotic that numbs the burning in my chest.  It works very well but I also am very duh, yes mor duh than normal.   I have tried to keep it to just an early evening dosage but today, Saturday, had to take an afternoon as well in order to eat.
Dr. Wang offered to go to the foundation that funds the clinic about my Tshirt.  At first, I was hesitant, but than realized that with their help I could have a broader distribution and hopefully in other languages.  We will see what he finds out.
I thought about putting together a little one page alternative newsletter called DISAGREE, with the motto Òif you disagree, give this to some one else who can disagree.Ó   Might do it after I gain some strength, donÕt want to face a testoterone laden while I am so weak.  And they are having a BIG rally at the high school this weekend.
Heroes - my septic tank line froze again (third time).  I can tell you given my condition this was damn near a tear jerker.  Called Loren Freie and he said he was filled up but would try get there the next morning.  Two in the afternoon of the same day he shows up. 
Dan and Cathy, my neighbors, along with Kathy have kept me in wood.  This has been critical because I just canÕt do it myself.  Today, Dan and Cathy came over and made enough wood for a couple weeks.  Good people them.
Have to admit am floating on the drug for my burning throat.  Have one week left of radiation and chemo.  Then every three weeks I will receive one chemo dose here in Long Prairie.   So it is wait and see.
Take care.
John 

**************************
Update 7 
April 19
Done, seven weeks of intense bodily abuse in the name of survival.  There is a sense of the anticlimatic.  I did get a paper of graduation from the radiation people, cute. 
Now, it is essentially wait and see.  In three weeks, I have chemo again, then again in three weeks and finally one more time in three weeks.
They called yesterday to set up another CIT scan.  This I really want to see and hope I can get them to give me my own copy so I can compare and play with it.   I assume this CIT scan will be this coming week.
I look forward to no more narcotics but am truly thankful that they have the chemistry worked out, there simply would be no eating without it.   I am guessing another week to week and  a half of use.
I really am looking forward to getting my endurance/strength back.  I figured out in the last eight weeks I have had:
Two times of 3 hours of sleep;
Four times of 2 hours of sleep;
and the rest were 1/2 hour and 1 hour sleep periods. 
My slumber being interrupted usually with coughing and/or bathroom needs for the more than a gallon of liguids I am consuming daily.  It is amazing that I have maintained my sweet, loveable disposition in the face of this deprivation.  However, I prefer my curmudgeonic self and am looking forward to being less tolerant and more irascible.
Thank each of you for being on this crazy journey with me.  Believe me the ÒtouchesÓ I have received from you in so many ways have been both the saving grace and the reason for pursuing the treatment.  The updates will come when there are things to share.
I want to walk my paths with Streak the bouncing wonder dog.  She is part husky and part squeaky door, very bright and lots of fun.  It will be wonderful to just get out and walk outside..

With love,
John Weber
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Update 8
April 27
Well, imagine my surprise when things didnÕt start getting better but instead were a continual Friday (remember Fridays were hell).  It turns out that at least one week if not two weeks after fininshing radiation that the pain grows as the esophagus heals itself from being burned.  There is no way to describe what it would have been like without the narcotic.  (I will be very happy to break this routine but have been told by the physicians that I am managing the drugs and pain very well.)
Kathy, in speaking with the nurse (Carol, the one who abandoned me for Ògood worksÓ down south) found out that the staff was amazed that I made it all the way through the radiation treatment without a break.  Uh, no one mentioned I could take a break, not that I would have.
They will start some more Chemo on the 7 of May and do it weekly for four weeks.  Yea, I know that isnÕt what I was originally told but who am I.  I might, in my sweetest way, mention that changing gears is not a fun thing since not feeling in control of very much is a big problem with this.
I think they are doing the Chemo because I kept my hair and that just isnÕt acceptable.  On top of that I think it is a secret NASA/military experiment entitled - ÒThe Persistence of Ear Hair and Its Use in Extreme Environments.Ó  Because, actually I have lost some head hair but not those lovely older gentleman side of the head puffs.
I have been thinking/working on an essay - the difference between care taking and care giving.  In a nut shell, the care taker is doing out of their own needs which can be many.   The care giver is doing out of the heart and a commune with themselves, the recipient and their spirituality.
Take care all.
John 
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Update 9 extra
May 8
Little more on the update- The Scan on Wednesday was the best they could hope for.   The tumor has reduced considerable and appears as they would expect it to look if it were in remission.  They of course can say for sure until the next scan in three months.
Update 9 
As the week progressed, physically I have been improving.  Actually, a very frustrating position of being better but not being well.  Still very limited.  I can walk a mile now, even split a little wood, but couldnÕt clean my chimney.  (Thank Dan again for being a good neighbor and taking care of that, it was really starting to worry me)
The hardest part hit on Friday.  ÒNow what?Ó  I donÕt believe I will recover my voice (I can only talk in a raspy whisper that is difficult) so doing therapy again is out of the question.  I have given up all my websites, so that whole connection is gone and donÕt really feel I could enter the competitive website business.  People will help me get my wood this year and that is wonderful but how long can I run this place? 
After thirty years of trying, I have given up on the energy scene.  The forces of nature including human nature are defining the future in ways that will make it rough.  Four years ago, I wrote some local editorials warning about the coming petroleum scramble.  I was told they were not of local importance (read - the business people are uncomfortable with the information).  Now, we face not only continued jockeying for petroleum resources world wide but natural gas problems loom seriously on the horizon.  It is not in our nature to change course.  So I am giving up trying to educate.
So depression hit pretty hard on Friday. 
I climbed out of it.
Some of it may be that I am concertedly reducing my narcotics intake so there may be some withdrawal.  I donÕt know, will find out on Wednesday.
But, the Òwhat nextÓ still lingers. 
My friends sustain me.  Kathy continues to be a wonder even as she herself has a full tray with its own stresses.
Wednesday, I start another round of Chemo (with two additional times three weeks apart).  Have some questions for the doc.  They will also be taking another CIT scan and am anxious to see that. 
The following week, I plan to talk to the people in St.Cloud who can make the T shirt, I want one in English and one in Spanish.   I still wish to see if the foundation will get involved with distribution.
Take care.
John
*****************************
Update 10
May 11
Well, in my optimism I  charged my tractor battery and got my recumbent bicycle ready.   Hah.  The new chemo is not recommended for fun and games.  I was one sick puppy.  Real teary (I have never been teary, geez).  Still battling it some. I hope it passes.
The CAT Scan was very good.  Essentially I was told that it looked as good if not better than they could expect.  The tumor was highly reduced.  Whether it is in remission will show at the next Scan.   I havenÕt seen the pictures yet.
Hope to go to St.Cloud on Wednesday to talk to the people who can do the T shirts. 
Unless there are significant reasons for updates, I will be doing less of them.   I think at this point it is really a wait and see.  I believe I have made it and simply need to regain strength and endurance.
Thanks all for your interest, your cards, your kind words.  They really mean a lot.  In a world that seems so crazy and hurtful, the kindness shown me by so many simply shines.
Take care.
Love
John
***********************
 
 

Update 11
June 15, 2003

This last month has not been fun.   As I had noted the Chemo made me sick.  So this time the  doctor decided to cut the dosage to 2/3.   Well, it damn near kill me.  This stuff is suppose to be toxic.  However, it turns out that I am one of the people that has an extra bad reaction to it.   I am just climbing out of a really terrible time of illness.
The people who I talked to about the Tshirt made all kinds of promises, sounded really nice and sent me (after waiting a month) junk.   I was incredibly disappointed.  So Kathy got me some of those transfer decals, I printed them out, took them to a local shop that has a big iron to press them on and they turned out fabulous.  Showed the T shirt to the Dr. Wang and he is going to arrange a get together with the administrator of the foundation.  (fingers crossed).
Had a disappointment with some work I had contracted to be done so I can live here next winter.  It simply didnÕt get done.   Am hoping as I leave Chemo behind and regain my strength that Kathy and I will be able to make that happen.
Had to call off a wood cutting party for the 21st of June I have been too sick to take the stress of all the activity. Hope to put it together later in the summer or early fall.
So it has been a rough month, but feel it is on the upswing.  Went up to the lake and was about to catch some bass right off the dock.  DidnÕt quite feel up to going out in a boat yet.
HavenÕt seen much of the sisters but will visit this week.  Because this is the last year the program will have existed there are two separate reunions, one of which is going on this coming week.  It will be good to see some of these woman from all over the world that I havenÕt seen in years.
I am in official remission.  They will check me again in August and then every three months from then on.
Here are some interesting statistics.
First year of having had cancer - 50 percent chance of not getting it again.
Second year - 25% chance of not getting it again.
Third year - 20% chance of not getting it again.
Fourth year - 10% chance of not getting it again.
Talk about gather your rose buds!!!!!!!
So this is an update for those who might have wondered.
Take care.
John
*********************************
Update 12

I am doing well.  Am impatient with the slow pace of getting my energy back.  Various sources (people who have had the experience) say 6 months to a year after treatment starts. 
For those living in central Minnesota, did you catch the 42 seconds of sun the other day.  I basked.  The mosquito populations are so huge here that the pure weight of them may tilt the earth on its axis. 
Drove up to the lake, two hours, exhausting.  Some of KathyÕs kids were there.  Really a good time.  Her daughters gave her a sail board for her birthday.  It was a hoot watching her really flying back and forth across the lake.
The meeting with the CentraCare Foundation representative was very encouraging.  She ask that I submit a grant proposal to their board for 1000 Tshirts - 800 in English and 200 in Spanish.  They would potentially be distributed through the chemical dependency unit at the St. Cloud Hospital that deals with teens in the central Minnesota area (13 schools).  Very exciting, but not counting my chickens.  Will know in September.
I have also put together a script for a TV spot.  It is included below.  I am open to suggestions, this is why I am sharing it.  I want to send it next weekend, so need thoughts fairly quickly.
Take care all.
Love 
John
 *********************************
Update 13
21 August 2003
I had the C scan and X ray on the 20th of August. It was inconclusive,
says the doctor.  The tumor is larger but he thinks it maybe a result of
scaring from the radiation treatment.  So it is up in the air.  I have
been getting steadily stronger so that is positive evidence.  Another
picture is scheduled for 6 weeks (1 October) instead of 3 months.
To say the least this is very sad and disconcerting for me and just
grabs my heart for what Kathy is going through (she was with me at the
doctors).
This last six months has taught me much about myself and about love.
As overwhelmingly painful and debilitating as it has been for most of
it, it was well worth it.
Another note, the foundation did not fund the T shirts.  I am thinking
of paying for a lesser amount (200) myself.   The director of the teen
counseling in 13 schools is interested and has asked me to come to their
September 5 meeting.
I also have thought about paying for a billboard.    Just playing with
ideas.
Have had some wonderful times up at the lake home.  Most of the time
Kathy and her daughters were there water skiing and sail boarding.
Kathy is very good at both.   I caught a 17 inch large mouth bass, a
huuuuuge fish and much fun.   Let it go immediately.  I am looking
forward to both of us moving up to the lake next year at this time.
Perhaps, some other thoughts later.
Love to all.
John

******************
update 15 

Good news; good news; and a fight.
The first good news is that I am still in remission.  There was no change from the last picture on 20 August.  It appears that the minor increase in size was from scaring from the radiation.  Yippee.  So my next picture isnÕt until January.

Coming to terms with facing this information every three months is a challenge.  Not to live in fear is important.  Make plans and live.  Accept what is going to be handed to me.   Am working on this.  Did relatively well this time with it.  Part of it is, these last 8 months have been an incredible battle, and it didnÕt seem fair to lose it.  There is no fairness, it isnÕt a moral issue.  It simply is.

The second good news is the billboards.  The first one went up on hiway 10 and it was all the way across the highway and very difficult to read the small print.  I spoke with Mary at Lamar Advertising about my several reasons for disappointment and we came to very acceptable terms.   This is a long story so I wonÕt go in to it but they had printed the second billboard already and it will be put up free of charge at a more accessible location.   And a third billboard with larger printing and an incredible location in St. Cloud will go up for a minimal additional cost.  So all is well.  Mary treated me well.  It turns out they are a national company, so I plan to talk to them after I get the first three in place.

I do my first kid talking about smoking at the Area Learning Center in Long Prairie this coming Monday.  It should be a learning experience for me.

Now the fight.  State Farm is cancelling their health insurance policies.  Not just me but all of them as I understand.  (To begin with the policy doesnÕt cover these pictures because I am not in treatment according to them, so that is a pretty penny each shot.) I will not be without insurance because Minnesota provides such insurance, however, it will cost an additional $4000 to $5000 the first two years. Insurance companies have made lots of money from us during the bull stock market. So just for the hell of it, I plan to sue them for the difference.   (The doctor said I should make it to next summer when this would happen.) Seems like an interesting thing to do.

Baked my first bread in 8 months last week.   yummmmmmm.

People are asking about buying the T-shirts.   All the existing ones are given to the counselors who work with kids.  I may order another 100 to start with.  They will have to sell for $10.  Ah, my first million.

Had some important help from neighbor Dan and some needed cooking wood from Greg.  Thanks to you both. Bread is on the way.  Kathy already has her bread and continues to be a blessing.

The fish at the lake are in for some fun this coming summer.
Take care all.
Love.
John
*****************

Update 16  25 October

Just a short update.  Am doing well.  Have been speaking to 2 to 3 classes of kids each week about not smoking.  I am giving out T-shirts to the teachers.   If they donÕt have enough, they hold a contest of some sort.   Have submitted another grant so that I can give T-shirts to all the kids.
Had a nice article in the St.Cloud Times.  It can be seen at:
sctimes.pdf

Put up a website:
http://www.rea-alp.com/~dragnfly
Hope all is well with each of you.
Love
John
*******************
Update 17 14 November 2003 

A busy week is coming up.   I am doing well, some problems breathing when it is cold but okay otherwise.

The coming week is ÒThe Smoke OutÓ.   Channel 11 out of Minneapolis will be interviewing me in front of the latest billboard at a very busy corner in St. Cloud and then going to North Junior High School to record my talk with the students.  This was arranged by Nurse Carol at the Radiology Clinic.  That is Tuesday.  Then on Wednesday, I and some students from the Long Prairie Area Learning Center will be on the local radio to advertise their fundraiser to put up a billboard on Hiway 71.  And later the students and I will be interviewed by KSAX, the local television station, again to promote their fundraiser.  Then Thursday the actual day of the Smoke Out I will go to the Area Learning Center to support for their effort.
In addition, the local paper is running a story on what I have been doing.   Whew.
I figure I have talked to between 200 and 300 teenagers in the last month and a half.  Most of it was really fun. 

If you havenÕt checked the website it is slowly growing.  I am constantly putting stuff on it:
www.rea-alp.com/~dragnfly

Then the following week right before Thanksgiving, I am going to talk with the boss in St.Cloud of the billboard company.  It is a national company and want to know how to go about getting the billboards up across the country.  Then, of course, Thanksgiving up at the lake with a bunch of KathyÕs kids.  Will be fun but I will be ready for some hide out time after all this activity.   Actually the week after Thanksgiving, I have another presentation to teens in St. Cloud.  Then down time.

Hope all is well with each of you.
Love.
John
**********************
Update 18, 30 Dec 2003

All is well.  The CT-scan came back clear.  There was some heart stuff so they had me have an echo cardiogram and that came back fine also.  So, I have another three months to raise hell. 

I am excited to get back to the non-smoking stuff.   There is only one of my three original billboards still up (commerce takes its toll).  I am hoping the four possible future billboards will occur (especially the ones by students).    Will know more after the first of the year.  My talks got to 400 to 500 teenagers in the first 3 months and hope I can do that many in the next 3 months.

www.rea-alp.com/~dragnfly

Hope you had a great holiday and are ready for a wonderful new year.
With love.
John Weber
**********************
Update 19 20 February 2004
One year later, I am a live and having fun. There are many to thank?
The staff of radiology and oncology at the Coburn Cancer Clinic, the
Sisters who selflessly came from Little Falls and drove me to my
Treatments, Kathy who gave so much of her time and caring, my neighbors
who help with wood and other chores, and my many friends praying in
different languages and faiths.  I am a lucky person.

Many years ago in Mexico, I followed a hot water stream up a hill,
climbing over large rocks.  After a while I decided that instead of
retracing my steps that I would climb the sloping sides that had been
carved out.  I started up the slope, steep but thought I could see the
top.  When I got to where I thought the top was, it continued on for
another 20 feet or so.  When I got to that ÒtopÓ it also continued on.
The steepness was such that I needed to lay flattened.   The material I
was climbing on was sand, gravel and rocks.  Each movement upward had to
be thought out.  There was simply no turning back.  Each movement was
concentration and focus.  Sometimes a handhold would break free and
tumble down the hill.   When I made it finally to the top, I was tired
and exhilarated.

This is what treatment was like.   I didnÕt think I was going to die
from the cancer (at that time at least) or from the treatment.   It was
constant focus and concentration; it was tense and intense.

What an incredible experience this has been.

And the billboards and posters and talking to kids (close to 1000) has
taken on a life of its own.  Am on my way to Duluth next week.  The Lung
Association is helping to speak to students for a couple of days and
will be putting up a billboard in Duluth.   Then I will be going to
Brainerd, Alexandria, and down near the Wilmer area.  I am having a
ball.
On the 18th of March I have my next CT scan.  Will reconnect with an
update then. 
One year and counting on more.

Hope all is well.
Love
John
********************
Update 20 March 18, 2004

Good news again. CT scan, echocardiogram and blood work are all okay.   This was the most nerve wracking wait I have been through so far.  I have things I would still like to do ­ move to the lake and help with the new living there; see and talk with more kids; get more billboards up around the state; recatch that bass.

So far have spoken to about 1200 kids and have the month of April if not some of May filling up.  There are two billboards up with a possible in Duluth through the Lung Association and another north of Alexandria through the Parker’s Prairie students.  The students at the Long Prairie ALC got their billboard up and rightly damn proud of it.  
Am planning to sell my place and it is very difficult.
There is an anthill that was here before I came.  A large home, that really hasn’t grown much in 30 years.  There are the oaks, large and old; we have watched each other age.  There are the many pines that I planted as babies, little seedlings that now soar some 30 feet into the air.  There are rocks, true boulders, dropped by a long ago glacier that barely sticks itself out of the ground.  Some day the earth will spit them out in earth time.  The hills and dips, the apple trees and wild crab apples, the trails I have made are all part of a many year path.  The many wonderful dog friends I have enjoyed and buried in their home. There is the garden that has seen truckloads of manure and hay pitched to it.  And my home, still standing after 30 years, I didn’t know a thing about home building. I have often wondered if there was a microbe that ate silicon caulk, if the house would fall down.   And the spirits of all the people who have passed through the doors.  So many and so much ­ it is really difficult deep within me to think of leaving this place.
www.rea-alp.com/~dragnfly
Take care.
Love
John
 ****************************

Update 23 15 September 2004

Once again all is okay.  It is amazing to me.  A year ago I was waiting to find out if I was in remission after a serious scare on August 20th.  Yesterday, I was able to briskly walk in a store looking for some stuff to install a telephone in our new pole shed.
 
I still get angina.  Actually two serious attacks and some very minor ones.  But given that it is now almost four months since the stents were put in, I think that is amazing too. 

I was able to wire the pole shed and build 2 large loft/shelves for storage. It has been fun setting this place up for our living here.

Have been fishing with bald eagles and loons.  They do much better than I.  The number of bald eagles on this lake is amazing.  Have caught 3 16 inch bass and one 21 inch northern this year.  That big, fat 17 inch bass has alluded me.  Am trying to learn to catch walleyes.

A man who gets grants to install solar hot air and hot water panels on low income homes is going to let me work with him designing and installing as well as sitting on the board and working the website.  This is exciting.  Something like full circle from my experiences in the 70s.  And so important because natural gas and petroleum are going to be serious issues within the decade.

Am hoping to restart speaking to kids about not smoking.  The talk will need to change and am not quite sure how.  Have made a true to size model of my tumor out of foam rubber that I can wear around my neck when I speak to them.  Am hoping to put up two more billboards but the billboard boss emailed me that there will be some changes in our arrangement.   The billboards have been so successful, I hope the changes aren’t too radical or expensive.

As I wrote earlier the DVD is ready and can be ordered from the website or just email me. 
www.rea-alp.com/~dragnfly

Kathy is doing well at work.  But is working too hard.  Teachers put in a lot of hours both at school and at home.  We are making new friends around here and that is fun.

Hope all is well.
Love
John Weber
1413 Wabedo Pass Rd. N.E.
Longville, MN 56655
218 363 2162
********************************

Update 24  12/17/04

Once again all is well with my CT scan.  It continues to be amazing to me.  I get a little angina every once and awhile.   Cold weather is really rough on my walks.

Have had the opportunity to talk with kids in Sauk Rapids, St. Cloud, Long Prairie, Wadena, Parker’s Prairie, and Backus.  I continue to find this enjoyable and worthwhile.  Some of these locations are a couple hours drive away so we arrange talks for two days; usually 1 or 2 talks one day and 1 or 2 the next with me staying over in a motel.   The schools pick up the motel tab.  That is nice of them.
The DVD is available but not moving as fast as I had hoped.  Even got an offer to fly me to New York to be on a TV program.  Didn’t want to put that kind of stress on myself.  Even going to the Twin Cities would be a biggy.  The billboard campaign has been a wonderful success.  It will probably end with Lamar Advertising July 2005.  They have been incredibly helpful with low cost and excellent locations.  Well over 100,000 have seen it.  For quite awhile there have been at least two up around Minnesota.  Because of this success and the long run, Lamar will need to charge me more.  I understand this but will probably not be able to afford the addition.  We will see.

Watching the lake turn to a huge sheet of ice was amazing.  It bounced back and forth for a while but now is solid.   Hope to learn ice fishing this year.

Am working on putting up 1.5 to 2.5 Kilowatts of electricity that will be fed back to the utility.  This is a really fun project.  The solar electric panels will be mounted on a structure that will have a greenhouse below it.  The greenhouse will have heat stored in rocks so that it will extend the growing season.  I plan to build it this Spring.

We bought a DVD called “The End of Suburbia” and have been showing it to groups for discussion.  It is about the peaking of global oil and the steady decrease of natural gas in North America.  These events will define global politics and economies.  They will literally change human history.  Google ‘peak oil’ to see the information.   I would be remiss not mentioning this to you.

The project of putting up solar air heaters on low income homes goes forward.  I am getting to act as a consultant periodically with this organization.

Kathy is doing well at work and we have been making some lovely friends around here.  Her kids were all home for Thanksgiving.  It was an enjoyable mad house. I have enjoyed the move, the change and the new challenges.

A grand holiday season and a wonderful new year to each of you.
Love
John Weber
1413 Wabedo Pass Road N.E.
Longville, MN 56655
218 363 2162
www.rea-alp.com/~dragnfly
 ******************************
Update 25 February 28, 2005

Two years and still going.  Absolutely amazing.  This is an interrum update.  I won’t have a CT scan until April but several have emailed me about my health. 

I am doing well.  This winter was tough.  First I had pneumonia for two weeks.  Then I thought I was better so went and talked 130 kids at the new Brainerd Middle School.  They gathered around me for a photo.  36 hours later I had the flu.  For two weeks.  Am finally coming back.  Even went cross country skiing.

Am excited about the solar electric installation that we will be putting in.  The system will be the first tied into the grid in our coop’s area so we are all learning together.  How it will work:  If it is sunny and the house wants electricity, the panels will provided it;   if it is sunny and the house does not need all the electricity from the panels, it will go into the grid system so others can use it; it there is no sun and the grid is down, then we will have batteries to run the house.  
In addition, I will build a greenhouse into the structure holding the electric panels.  The greenhouse will have two solar hot water panels on it that will store hot water in insulated tanks to be used to keep the greenhouse above freezing (hopefully).

I have been asked to give a talk next September at the Minnesota Society of Radiological Technologist Fall Conference.   This should be fun but will have to be very honest with them because they can see right through me.  

Kathy is doing well.  We both are really enjoying having moved up to the lake.  She is enjoying her absolutely adorable grandchild, Nicholas. 

Hope you are doing well.
Love
John Weber
1413 Wabedo Pass Road N.E.
Longville, MN 56655
218 363 2162
www.rea-alp.com/~dragnfly
***************************

Update 26 April 14, 2005

Once again all is pictured well in the CT scan.  And I made by 62nd birthday.  This continues to amaze me.  I asked the doctor what determines who makes it and who doesn’t, he had no idea. 
I watched the lake ice leave and am right now watching fish hit the water surface.  There are two loons out there eating MY fish, the nerve.  The bald eagles have been soaring and we had some trumpeter swans stop over for a while.  Should be getting the dock in soon.
The solar project starts next week.  It has been a lot of fun being the general contractor so to speak on this project.  It has involved more people contact then this recluse is use to. 
Am helping with a couple of the Relay for Life activities in the area.  Mainly being a gopher.  Am giving the talk at one down near the old homestead.  One of the themes I plan to present is – The Joy of Liver Spots.
A local young man fixed my Honda 90 motorcycle which had sat for 25 years.  He removed the mice nests, fixed the wiring and tuned it.  It got 90 miles to the gallon when I rode it 25 years ago.  Soon I will be breezing down the highway at 35 mph, varoom.
Kathy is doing well and has not started counting hours (only days) until school is out.  We are making new friends up here and having a great time.
Hope this finds you well.
Love
John Weber
1413 Wabedo Pass Road N.E.
Longville, MN 56655
218 363 2162
http://www.rea-alp.com/~dragnfly
********************************

Update 27  12 August 2005    

Once again all is well with my CTscan.  I continue to wonder at it.  With Peter Jennings death and Dana Reeves diagnosis, this was a nervous scan for me.  While at the clinic I saw many of the people who had made it possible for me to write this note 2 and a half years later.  There was one nurse who I didn’t know but whose son had been in one of the classes I spoke to and she said it made a big difference for him.   GOOD FEELING!

This has been a fairly good Spring and Summer.  I installed 2.4 kilowatts of solar electric panels that feed the house and when the house doesn’t need electricity, it feeds the grid.  Fun.  We incorporated a greenhouse into the structure and will play with it this winter.  Also will be adding some solar hot water panels that were given to me years ago.  The solar electric is providing about a 1/3 of our needs without major reductions in use at this time.  I really enjoyed building the structure and installing and wiring the panels.  Am exploring going into business with a local builder and electrician.  I would be the gopher.  (see picture at:
http://www.rea-alp.com/~dragnfly/PicsInfo.html    )

The state gives a rebate.  With the rebate, I bought four more panels so it will came up to 2.8 kW.  I also bought a Honda Reflex 250cc motor scooter.  Kathy is getting her motorcycle endorsement and we hope to get another big scooter so we can go cruising.  (See picture at:                                               http://www.rea-alp.com/~dragnfly/PicsInfo.html    )

I can only with good conscience once again emphasize how serious the energy situation is.  Even Chevron had an ad in Newsweek warning people.  See at:
http://www.rea-alp.com/~dragnfly/PicsInfo.html
If anyone wants info on petroleum or natural gas, I will happily email you stuff.  I plan to spend some time trying to help people understand the energy situation.

The fishing has been okay.  Very weak in the beginning of the season but better lately.  Weather permitting, I have been riding my recumbent bicycle 5 to 10 miles a day.  Was active in the Relay for Life in both Pine River and Walker.  Hope to do more next year.  Met wonderful men and women.  
Kathy is getting ready for school.  We have had a wonderful summer.
So I continue to be grateful and full of joy.
With love,
John

http://www.rea-alp.com/~dragnfly
http://www.rea-alp.com/~dragnfly/PicsInfo.html
*****************************************************

Update 28   13 January 2006

Still pluggin’ away.  The CTscan came back just fine.  It still amazes me. 

I split some wood each day, walk, volunteer at the library (they were amazed at how fast I am at shelving, told them that alphabetical stuff just slows ya down), volunteering with Relay For Life, and general causing havoc and mayhem.

The solar electric installation has worked wonderfully well.  The greenhouse, well, um, well, back to the drawing board.  Actually, it needs a source of heat and that would not be wise.  Up here, greenhouses should be attached to the home.  Our sun porch goes to at least 50 degrees above the outside on sunny days.  Learn and live, I always say.

Interesting realization.  This last summer was very stressful.  It took a lot out of me.  By September, I was pretty depleted.  It was  a struggle for my reserves.  I came to realize after going through the truly horrendous cancer treatment , the heart stuff and then seeking to maintain during this time, that there is a life “spark”.  I have no idea what I really mean.  I know it is not conscious nor at least for me under my control. 
Because I have always been curious about life, I thought I would try to figure this out.  Experience this.  BUT, after a couple of weeks it came to me, that perhaps I didn’t want to touch this.  That perhaps when you do touch it that that would be it, you are ready to move on.  That curiousity is wonderful but this one gets to show itself it due time for all of us.  

Now it is six months between check ups.  Actually the doctor told me I would probably know before them if the cancer had raised its nasty little head again.  That makes every little ping, pang and ache enough to drive a guy to drink, if I drank. 

Kathy is doing well.  We are doing wonderfully.  This whole periodic testing is really rough on her.  I hate that.

Hope this finds you well.
Love
John Weber
http://www.rea-alp.com/~dragnfly
 ********************************************

Update 29, Aug. 14 2006

Amazing.  Both the CTscan and the blood work (heart stuff) came back just fine.  The doctors are amazed.
Not to belabor the word but I am amazed to be alive.  And I am amazed at life itself.  I don’t mean some new age BS.  No halo on me.  Being alive simply awes me.  Finally over 3 years after finishing treatment, I can “see” how sick and stressed my body was these last three years.  I knew my mind had been clipped from chemo but as it is coming back it is a wonderful feeling. 

All is well on the lake.  We have organized this place inside and out.  Kathy’s garden flourishes, she is a life giver I believe. 
I volunteer at the library still and am starting to connect with people about energy.  Am very interested in promoting local community awareness. 
Have gotten into digital photography.  Not very good at it but having lots of fun.  Below is a wonderful site where you can see some of my pictures and if you are interested see works from all over the world.
http://www.flickr.com/people/89408640@N00/

Hope this finds you well.
Love,
John Weber
http://www.rea-alp.com/~dragnfly
 ******************************************

Update 30 20 December 2006

It has been a very active Fall. I had an early CTscan because I got sick
for over a month and couldn't kick. Emergency room the whole bit. So
thought maybe the big C was raising its nasty little head, I went in.
Once again Dr. Hauge comes through, CTscan clear, it is hypothyroidism.
Besides being constantly cold and tired it made me irritable. Now I
realize that few will believe I could improve on my that but I went from
a high level amateur grump to Olympic material. Yes, the hypothyroidism
may have been around for a while (actually it probably has been at least
since the radiation). A little pill and I am splitting wood, long walks
with camera and waiting for snow to cross country ski.

The other piece for Kathy and I is we bought 40 acres near here. It has
a house, a utility building and a barn. I have rewired the house and
other stuff is in the works. We plan to develop a fruit and nut orchard
along with some animals. Very exciting.

There was such a difference between this last bout with illness and the
radiation/chemo experience. With radiation and chemo although the cancer
was inside the treatment was imposed from outside. I felt some control
over what was happening to me. With the recent illness, I couldnt get
under it or behind it. This was a far bigger problem to me than
treatment. I am very pleased a very little, well tested treatment/pill
is taking care of it.

All else is well here and life is a joy. Hope all is well with you too.
With love,
John Weber
http://www.rea-alp.com/~dragnfly

********************************************
Update 31  30 November 2007

I have not sent an update for a while.  I was and am doing very well.  I am amazed at this.  It took over 3 and a half years to get on the other side of the treatment I went through.  I didn’t realize how debilitated I was until a few months ago now that I feel fairly well.  Breathing is still a problem and sometime energy.  Sinus problems and pneumonia also sneaks up on me sometimes.  But for a 64 and a half year old guy I am doing well. 

We had to drop a huge oak tree that was dying.  I split the whole thing up with a maul and a wedge and loved every minute of it.  We have been buying a 40 acre piece of land near our home.  On it we, fenced 2 acres to develop an orchard for apples and small fruits - food for the future.  I did many of the fence posts with a hand post hole digger (20 of them, 3 feet deep).  I hired some teens and a mechanical post hole digger to put in the posts between corners. Kathy and I did all the actual fencing.   We fixed up the small house on the place too.   This year we put in ten Honey Crisps and some grapes.  So we have been busy and having a ball.  I am planning drip irrigation for next summer.

I hope this finds you well and thriving.
Love
John

solstice    
 
 

 

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