2008 Lake Havasu, Arizona

Visiting Lake Havasu

August 27-29, 2008

It took over five hours to drive through semi-small desert towns, through rocky ranges spotted with cacti, past the wandering sand dunes without getting blown away….. and I arrived safe and sound in Lake Havasu and the new abode of Greeneyes67 (Lenn) and Greeneyes6/Tee (Trina)!

It was beautiful there!! In spite of the 107° F temps I like it.

Once upon a time, Havasu brought over a former London Bridge, and here it stands.

As you can see, we enjoyed each other’s company

Great weather and great things to see in Lake Havasu

A real roadrunner walked through her garden, I made a video of it but it’s not up on YouTube yet, but here you may find it:

nice view

Lenn with her then partner, Trina and her cat Prada

by Parker Dam on the way home

and entering San Diego County

 

List of my great JS visits!!

OK, I’ll try to make a list of all the JS’s I got to meet personally.

!. Wizardress in Holland

2. Lowandslow/Scott and dcmb01/Kelley in Dallas, Texas

3. Likeisaid/Betty and her husband Hamborn/Paul also met in Dallas, Texas

4. Gillardia/Stephanie and her later husband drstrangelove/ Brett Melton also in Dallas, Texas

5. Harpo, Juanderlust/ John in my hometown of El Cajon, California

6. Justfly/ Gwen when she managed to visit me in Germany!!

7. Mermaidinflames/Mia at her home in San Francisco, California

8. Fitzgerald/Kelvin in my hometown El Cajon, California

9. Kershew/Janet also in my hometown of El Cajon, California.

10. Mr Schribbler/Ray Thursday 3 times, one in San Diego, California and  once in San José, California

11. Fin/   in Edinborough, Scotland: he was the guy who introduced me to JS!!

12. Ramonster/Ramon on a visit he made in Frankfurt

13. Greeneyes/Lenn and Tee/Trina in 2008 Lake Havasu, Arizona, USA

2024 Train trip to Aschaffenburg

2024

 Trips with Train!

Written on June 26, 2024

Just want to tell you guys about my wild trip with not very good German train. Once they were really great, but not anymore.

On June 25, 2024 my present care person, Dominica, and I wanted to take the train to Aschaffenburg, with me in my darn wheel chair.

Having bad experience once before, the elevator at our home station showed in the internet that both elevators worked, but when we got there, the one we wanted wasn’t working! So we changed our plans and in stead of going to Seligenstadt, as originally planned, we went to the other track (No. 2) which was to Aschaffenburg.

This time both elevators were working. But, the “adventure” wasn’t over yet! We went up to the proper track, the train was scheduled for an 11 o’clock departure. We were, as usual, early, but at 11 the train didn’t arrive yet and there was NO announcement! Finally it arrived, but on track No. 3, !!! That meant, everyone had to leave this track and go to the other one. We rushed to the elevator, but someone got there before us. It finally came, we went down, but the one we needed for the other track was constantly busy with people with bicycles. By the time it arrived for us to use, we could hear that the train already left!!

That meant waiting for the next one that was scheduled for 12 o’clock. We went to the small waiting room where there was also a small dispensary offering drinks. I didn’t want anything but Dominica bought herself something. She sat down with her drink and handy (cellphone).

I could look around and there was a wall with book cases full of books. They were free to take so I looked to see if there was one I might like. They even had books in English and I found one by the very well know British writer Rosamunde Pilcher. Great!. I have seen many movies from her books but never read one.  There was one about Ramses by Christian Jacq, but I already had that one at home. We then went back up to track 2 and the train soon came. But we were both quite angry, especially Dominica.

We got an board and our “tickets” were soon checked by a young porter. Since I have a special ticket, allowing someone to accompany me, there was no problem.

We soon arrived at Aschaffenburg main station, track 5, but there the elevator didn’t work! We mentioned our problem to the young porter, he left us but only short. He came back and told us this train will pull forward, then backup into track 2, which it actually did! He put down a ramp so we could get back on very easily. He also did that at track 2 so there no problem getting off. He was very nice guy (plus points).

We knew from our months before that at that track we didn’t need an elevator because they had a ramp leading down into the station. Then we walked, as planned, to the big shopping center where Dominica wanted to pick up something she had ordered. Before we went to the particular store, she sat down at a bench and started making a  phone call on her handy, (I think with her mother in Poland). She told me I could go around, whatever I wanted, but at that area there was nothing interesting for me to look at.

After she finished her call, we walked to the store she needed and picked up what she had ordered. After that we went to Karlstad, which actually still existed in Aschaffenburg, since many in Germany have closed down because of the company being bankrupt, like many companies in Germany. There she wanted some particular shoes but they didn’t have what she was looking for, so went to another store, a shoe store, but they also didn’t have them.

So we slowly started walking back to the train station. We hadn’t had anything to eat and there was a McDonalds there but Dominica didn’t want to go there. She preferred to call our favorite restaurant in Babenhausen, placed a take-home order which we would pick up later and eat at home. Good idea.

We had to wait quite a while for our train. We found a bench where Dominica could sit down and play with her handy (yes, she’s addicted to it, LOL).

Finally we could board the train and again a very nice porter helped us with a ramp to get on. We told him about our problems that morning and he said it’s usual that tracks get changed but ours did! He told that the elevator on track 5 had not been working for some months! Unbelievable. He also said that the station in Offenbach was also quite bad and there were some towns that didn’t have any elevators at all! When we arrived at Babenhausen he again put down the ramp for us, again plus points). Domica said she never wanted to try a train trip with me again. She would rather take a bus, which I don’t care for, but so what.

I thought we were going to walk home and she would drive with her car to pick up the food, but no, the restaurant was closing at 3 and it was now about 2:30 so we went directly there, got the food, and walked on home.

I forgot to mention it was a very hot summer day. And neither of us had to go to the bathroom. My mood was also a bit sharp by now, and when we went by a café with people sitting at tables outside, there were a couple of bicycles blocking our way. I got really upset and yelled at the people sitting there but they hinted the bikes were from someone indoors. Dominica was able to push a chair aside and we had enough room to continue. We got to the restaurant, I waited outside, there was a fat man sitting practically in front of the door so I couldn’t go in without telling him to move aside. Oh, well….we survived and the food was great, as always by that restaurant.

Dorrie/Westy

2007 Visiting Wizardress in Holland

2007

Holland with „Wizzi“ /Lori Sepp

Through the blog site „Journalspace“ I met Lori, or better known as „Wizardress“. Like me, she’s an American gal who living in Europe, in her case, in Holland. Through our journals we discovered that we had lots in coming and hoped to meet some day. That day finally arrived!

my cat, Shila, somehow knew I was leaving her behind…..

I boarded the fast ICE and arrived in Amsterdam after only 4 hours. Lori and her husband, Marcel, arrived to pick me up and we drove to their home to spend an unforgettable weekend.

Day One…. arrival

During the ride, I managed to take a film from the front of the train….

 

The view from Lori’s balcony….

Lori and her cat and JS account member „Mr. Mistoffeless“

At thei favorite beach restaurant

Beech impressions

Day Two … Trip to Alkmaar

The weather remained perfect and we drove through the countryside, ending up in Alkmaar. We took a walk through the streets, then decided to take a canal boot ride…. and had the most fun!!

Mr. M. keeping me from writing in JS

varoius impressions

ducking low to pass under the bridge
and finding a street with my name!!

After our marvelous day in Alkmaar, we drove to the beach. It reminded me a lot of California. I noticed many more shells along the water in the sand, and there were lots of jelly fish that the kids played with. Marcel stayed sitting on a bench while Lori and I took a walk along the shore…..

Day Three…. Amsterdam

 June 3, 2007

On Sunday we planned a trip to Amsterdam, the city where my dad was born. The weather was a bit more overcast, but still good. Little did we know that in the early morning hours, about 2000 people posed NAKED for an American photographer…. who knows, maybe we would have joined in?  Eh, … no….. I don’t think so *wink*

After leaving Amsterdam we drove to a castle near where Marcel and Lori live. Lori and I took a little walk through the lovely gardens. This is also the park where they had their wedding photos taken.

Lori playing hide and go seek

Day Four…. Good-bye!

June 4, 2007

It was time to say good-bye… to Lori, Marcel, Mr. M, and Chucky, their dog. He’s getting up in years, but manages to „survive“ Mr. M. quite well.

The train trip home started off well enough. I luckily had reserved seats, since the train seemed to be full.

Soon after crossing the Holland/Germany border, the train stopped in the middle of nowhere. Nothing unusual… technical problems they announced with a delay of 5 min… no biggie. We started off again, then stopped again, this time at a small train station that probably never saw an ICE train stop there before! Something with the battery, delay of about 20 minutes. OK, no problem. The lights went out, but then on again. Then came the announcement: we were all to get off the train, cross to the other track, and catch a regional train!

Everyone started grabbing their luggage and heading out. There was some pushing and shoving, especially among some teenage Dutch boys, but everyone follow orders without complaint! Very unusual…..

Luckily it wasn’t raining as we all stood on the other platform to wait for the train. The town is so small, I haven’t even been able to find it on a map yet!

 

Thanks for the fun trip Lori!!

2011 Justfly / Gwen

In spite of the JS crash in December 2008,” Justfly” and I still kept in contact. When she mentioned she’d be flying to Germany for the Christmas markets, I knew she’d be flying through Frankfurt, with plans to visit the Frankfurt market, and so we were able to arrange a meeting.

I met her and her friend, Jeanette, at their hotel and together we walked to downtown Frankfurt. Our first stop was the top of the Main Tower…….

The next day I joined them for breakfast at their hotel. We then packed into my car and drove off to Babenhausen. First we stopped at the airport to pick up Justfly’s delayed suitcase.

At Babenhausen we first stopped off at Regina’s office, she worked in a travel agency, so they had a chance to meet her, too. Unfortunately the grandkids were at school …….

After that I took them on a tour of my quaint medieval village, showed them my apartment, then dropped them off at the train station for the ride to their next stop, Nürnberg.

Thank You Justfly and Jeanette for a fun two days! I had a great time and it was so fun with you both. I do hope you come back again some day with more time so I can show you many more sites!

2008 John / alias JuanderLust / HarpO

On Monday I had the chance to meet another Journalspace (JS)  friend, John…. also known as „HarpO“ or „JuanderLust“. He picked me up at my folks place, then we drove off to find a store to do some shopping and to look for a self-serve car wash (which we didn’t find until much later), then continued up the wild country roads to Alpine/Jamul and the cottage he is renting there.

There were storm clouds in the distance and fascinating landscapes to see.

Typing out his „Picking up Chicks“ entry in JS
He was fascinated with the round house located just below the mountain. Later, when we met my brother, Carl, we found out the he and Alice also were fascinated by it.

Hijacking John to Borrego

January 6, 2009

Text is from my blog entry

There’s a spot east of where my folks live that I just love. It’s a place called „the Badlands“ and I knew it was the perfect place to drag John, alias Juanderlust. He didn’t know what he was getting into.

After successfully surpassing the Laguna mountains, which range up to about 4000 ft. and displayed remnants of snow, we reached Borrego and searched for the exit to our destination. John was sure I was crazy when he saw the exit…. a sandy, hard to
recognize, wash.

His little Suzuki mastered the soft underground, and John was even more unsure about my state of mind. Until we reached our goal…. Font’s Point. The view amazes me every time I visit that spot.

So, after showing this spot to Fitzgerald a few years ago, another Journalspacer has been introduced to the wonders of Southern California from a gal living in Europe.

Today I met up with 
Fitzgerald down at the beach and we did a lot of JS discussion. He’s turned out to be a good moderator at my JS Fun Forum… thanks for that Fitz!

And tomorrow I meet up with 
Kashew

So, as y’all can tell, I’m keeping busy as usual!

Those were not the only pictures I took that day…. enjoy some more!

Below I have copied in here those last entries he wrote about his hospital experiences:

Sunday, October 1, 2017

So, This is What it is Like To Have Energy

a couple of Johns last entries in JS:

I guess this is how adding red cells when you aren’t used to having any works.  At first I felt OK but not a giant difference.  By this morning I was feeling like a happy person with energy.  Our first gig was at noon, Nate’s Garden Grill.  All their food is good, carnivore stuff or not.  It’s a cool place with half the tables outside.   The kitchen is located on one side where indoors meets outdoors.  It works well.  Lots of families with babies.

I’m always surprised that people sit right there in front of us with their kids.  We are not loud, as musical groups go, but still I would not think they would feel good hanging right there with their babies.  It’s weird playing to tables and people eating.  I often covet what I see on their plates as I musically babble through the harmonica.

It was so shocking to me today that I not only did not feel winded carrying an amplifier or walking to the car or any of that.  I had no idea that this would make such a difference in my playing.  Not stuff that involves much breath but finesse stuff and nuance.  Everything felt so easy and doable.  I am used to it actually hurting.

I know I will soon turn back into a pumpkin.  My preferred thought is to enjoy this while I can and throw my heart into the playing without being a lunatic or inappropriate, but when there is a cut loose number go out for all I am worth.

Now, I felt like I was really delivering quality backing and playing at Nate’s.  I was loving it.  But on our second gig, this evening at Rebecca’s, I gave our „John, cut loose!“ number everything I could.  I have no idea what I did but people were reacting audibly at several points.  It’s almost a polka beat, but not.  I forget what someone called it.  All B minor and only a couple of cords, but pure heaven for me.  Anyway, it’s the kind of thing no one else is probably doing.

Maybe this was an important show for that group.  Another group played and then a guy did a short set, and then us.  I looked up and all the people usually doing other stuff while they listen were all watching us, and the baristas were leaning at the end of their counter listening.  It was like all other activity was suspended.

People were saying, „What are you guys doing here?“.  I should tell you that the South Park area is rife with lunacy, so as great as those compliments might feel,  it is not something I’d take to the bank.

The whole thing with me was concern that I might be already back to the condition I was in that panicked my hematology guy into topping me off with some high test A negative.  A circumstance I never thought I would face.

I grew up under and around certain people who would have refused a blood transfusion.  I used to wonder if I would have qualms.  I guess not.  I knew the score, and my Dr., and there is no way he would order such a thing if it weren’t imperative to the life of the patient to some degree.

I don’t think I should continue discussing this now.  It could make me sad.  That is wrong.  Go be sad after you kick.   Despite what people make of it when they think it’s all forever, life is a remarkable and beautiful state of affairs.

Probably there will be some difficult days ahead, but I have a shot at getting past it for some time.  Depends what we got going.  I probably already know, but I prefer to let that slide.  I need it all to turn around.  And it may.

In the mean time, I hope I still have energy tomorrow and that it does something good for a person to cross my path or hear us play.  If it does, then I’ll probably be having a good time, and they’ll throw money.  Right.

It will be outdoors, and should be a decent crowd.  I would have rather had a later time, but people will be out, just not as many as later.  We play at 12.  I hope we do as well as today.  We had some errors, but they really did not matter.  No clash or off key mistakes.  Sande never sings off key. I have never heard her hit an off pitch note.  Some people are not all that into it, but a ton more are.  Especially lately.  Something changed.

We got an encore after the cut loose number.  Never seen that in a coffee house.  They were friggin chanting.  So, Sande graciously agreed to do another „John cut loose“ number.  I was kind of paranoid about turning back into a pumpkin.

I was sitting sideways in my car, door open, feet on the ground.  I stood up.  I am so much in the habit of that being a real effort that I groaned without thinking, but I was already up.  I just stood up like i used to do.  I guess I used to.  I honestly do not remember how differently I felt, but I know I did.  This is another ball game.  Priorities and outlook change a lot, but if you notice it, it is scary, so if I am you, the you just block out the things that bring uncertainty and fear.

Because all I really need is what I said before, the cabin to be put in spic and span spiffy primo condition, and to have some other things straightened out.  Then I can face whatever.

It looked like several people were taking video.  I wonder where they’ll be.  I hope they youtube them.  What their titles would be, I am not sure.

I made a mistake of looking up treatment for what I thought maybe they’d diagnose when the results of the appropriate tests are back.  I’m doing no more of that.

Until awhile ago, I was really feeling upbeat.  I have to maintain that.  Whether it influences this condition or not, it is a lot more enjoyable being upbeat.  If time may be a little less abundant than I like, all the more reason.  Be upbeat while you can.

One thing for sure, I have not been imagining things.  Some people tend to need that sort of reassurance regarding their sanity.

Oh. This was about energy.  What a great feeling.  I was in one of those „I love everyone“ modes.  Even the people I cussed at in traffic.  One of those, „He’s as lazy as a dead skunk, bless his heart“ sort of things.

I almost forgot.  Never mind.  Suffice to say this brief reprieve made possible by modern medicine has been, and is, I hope, a real treat.

Most of all I am missing denial about now.

Posted by John0 Juanderlust at 1:25 AM No comments: Links to this post

Friday, September 29, 2017

What an Odd Day

Geez.  I never did get sleep last night.  Probably because phriend Pham indicated that if red blood was currency, I’d be near destitute.

Finally got there by 7 AM.  Traffic is not horrible, but still a slow down.  After having to set some arrogant doctor straight, I got them to speak to my team, as they should have done from the get go.  I will address some of this with Scripps admin.  If I have to deal with stupid medical outfits, they need to correct some of the glaring deficiencies.  Had I not held my ground, this dork would have been taking stool samples and doing other unpleasant and contextually inappropriate procedures.

He finally hid from me the rest of the day.  But his boss will get some fire when I return.

They did the bone marrow biopsy—talk about a pain in the butt.  It had its moments.  Those results come next week.  Looks like the game has changed but no use guessing specifics because I only know the general possibilities and they get treated differently from one another.

I had a friggin blood transfusion.  Takes three hours.  So, if I were strongly tied to certain religions, or if I were my late mother, I would have refused it and shortly run out of reds and platelets and been overrun with white cells.  I did not think the prognosis would be good even in the short run without the fill up.  „High test!“, I said, „with Techron.“   They complied.  Only the best for me. A negative.

The best thing is, people think I don’t look sick or infirm.  Better to look good than to feel good.
It’s possible this can be controlled with various high dollar substances like forms of interferon.

When I think how fortunate I am to have access to some top notch doctors and facilities (despite the previously mentioned shortfalls)  I am grateful.  Many people around the world would just have to die.   I’m also glad I made it a point to supplement my commie medicare (joking–but only partly), and I have supplement for prescriptions.  Some stuff is pricey.  So I did that right.

I am not as depressed as I was.  Maybe because I knew this was coming, and maybe because I temporarily have some juice in my veins.  Other than my traditional mix of ice water and lemon juice–no sweetener.

Doctors don’t know what to make of me.  Especially me singing the praises of denial as a treatment strategy, and making the guy doing the bone marrow swear he is an artiste in this field.

So odd, it feels like this is all child’s play and I am just going along with it.  But I do not feel like one of the afflicted.  More like a research project or something.  That disconnect is likely the denial part, but why get into it in a way that makes one feel bad?

I am still convinced this is going to turn around or work to my ultimate better good.  It will be OK.  Really.

Great gigs this weekend, Nate’s Garden Grill—they love us, and are very kind and they have food I not only can eat, but I also like—not always the norm in vegetarian land.  Not like Pine House.  Wonderful place, but no good for my dietary habits.  The tomorrow night, Rebecca’s coffee house.  Never know how that will work.  Nice enough place. Half the time I know 80% of the room, but sometimes interesting beings visit.

Then Sunday afternoon the Adam’s Avenue Street fair.  Outdoor stage and who knows what kind of crowd, but plenty of people, whatever they be.  It’s an artsy sort of place.  I think many crave our leader/singer, Sande, in a KD Lang sort of way, if you get that.  OK by me.  I like KD’s version of Hallelua almost as well as a girl from Australia who used to communicate with me on garageBand.com.

OK.  So I whined about transfusions and hooplah, and who knows what.  I feel positive in an automatic way; not forced, thought out or contrived.  Just feel OK with everything.  But will be even more OK when we tackle this mess.  Not really that bad.  Just not to my liking or expectation of how one should keep the property of others, as in landlord’s pad.

I can only hope that those who reject transfusions no matter what are wrong.  I don’t know the alleged consequences, probably varies with individual holy persons and their particular dogma.  That is not to ridicule them.  I am for choice.  Maybe they are right—for them.  I feel protected by something unseen.  I just do.  And I really am.  But I do not know the ins and outs of all that.  I just feel like It will be alright, whatever It turns out to be.

My story is so full of prodigious little rescues and such.  If you were me or real close, you’d get it.   Like lucking into medical services from being fairly poor and totally uninsured four years ago.  And I have dealt with the real cream of the crop, or first stringers, at least.

I a beginning to believe there is something to the idea of having lessons to learn.  But that makes absolutely no sense to me.  Why and who?   Why lessons and who is headmaster, OR HEAD MISTRESS.   [I seriously hate the aggressive ignorance which leads us to reject the notion of universal pronouns because we are too mad at our lives to get it.]

Many think they know the answers but their explanations seem unlikely, wrong, or just wacko to me. That’s OK.  I’ll just settle for feeling at peace.   Or at least calmly accepting of reality.

Next week will be interesting. The biopsy conclusions.  I expect the verdict to be „Ice Water in Veins“.

Posted by John0 Juanderlust at 11:30 PM   

Monday, November 6, 2017

More Than That

It is a scary thing in most ways to have to enter a hospital for extended stay with only hours notice.  No time to even go out to your hermit cottage on the mountain, with that wonderful view, and wildlife.

Then after 3 weeks on the inside experiencing things that are for other people, like chemo, hair loss and generally serious talk about your condition, you find out the place on the mountain is basically history to you.  The incredibly kind landlords are putting their place on the market, and that includes the cottage.  Due to typical laws of housing and such they cannot sell the cottage and its property separately.  I was trying to buy it that way from the start.

So, I will probably pay Nov. rent on 15th and give notice that I’ll be cleared out by Dec 15th.  The two angels who took it upon themselves to get my stuff out and the place cleaned, while laughing at me and enjoying the whole thing, assure me it will be done by then.  They already have done most of the hard stuff.

I’m glad I cleared out the shed some months ago and set up storage in Alpine.  I arranged another unit downstairs to make their efforts easier.  And to give them fresh space.  The other unit is slightly smaller and upstairs.  Last time I put something in there, not a heavy item, I was winded just half way up the easy flight of stairs.  That was the blood situation heading south into leukemia land.  Who knew?  Not me, though I suspected something was awry.

So soon I am technically homeless but for the kindness and insistence of friends.  It is a fortunate thing.  I have noticed that some people find it both puzzling and annoying that I have such good fortune.  I am not sure I understand that thinking or care to.

For the first time In many years I am happy, and I intend to remain that way.  There is so much to be done if I can get to the other side and thrive enough to do it.  I expect to.   Too much has been too good to forget and let this view of life fade into what it was.   

There have been a few hiccups in the process but overall it is going well.  They finally did another biopsy today.  We hope it too comes out clear of leukemia cells.  Very good chance it will be clear.  Then to see why the slow recovery and slacker output of various types of blood cells.  They may do some things to stimulate it and they may be able to go quicker into the transplant phase.

Got to do that with my situation  Just do.   A number of fortuitous and, one might say, coincidental events had to occur in order for all the good stuff to come together at this time.  That does not escape me  I don’t play God’s spokesman by claiming a particular reason or crediting a particular deity.  There are people who will fight you over your reluctance to accept their view of life and existence and God or not.  Seems an odd approach.  Any excuse to get angry, I guess.

This is about my 14th second chance in life.  That is when I successfully get a rebuilt and rebooted immune system and blood factory.

What matters does have to do with people and somehow bring a little joy their way.  Still, that does not mean you accept the unacceptable in your attempt to love everyone.  Enabling or arguing with alcoholics can be fruitless and not something that brings joy to anyone.  Those who find it hard not to be jealous or almost bitter over your good fortune are not likely good choices for a future life filled with love.  Seems like an obvious thing but you’d be surprised how much I have indulged those who felt better raining on any parade I might enjoy than being happy for it.   People do get jealous over odd things.  I would never admit that in the past.  I should have.

My new litmus test is, would my brother endure or indulge this activity?  He has been very good at just shutting out those who’d sap his spirit and time.  It is real easy to know the answers.  And I am enjoying employing that private form of respect and love toward him.  He’s had much to do with getting me through the darkest of times when I least expected it and most needed it.

I’m sure many people find such love and angels in their own lives and families.  I hope so.  It is a source of pride and gratitude and humility in a sense.  I can finally accept without guilt or shame.  The givers get satisfaction from seeing joy and gratitude.  They know they are altering your life and circumstances.

It has taken me a long time to accept the simplest of truths in life.  Several of them.  I do wish everyone had my good fortune.  Not my disease or mutations but the good stuff that this condition has allowed me to experience and know, not just see.

Posted by John0 Juanderlust at 11:55 PM

Thursday, November 2, 2017

Maybe Fate, Maybe Just How It Goes

Since Oct. 5th I’ve been in this resort, known as a hospital in La Jolla.   Days 1-7 included a 24/7 chemo drip, along with various drugs to counteract the chemo and keep me happy I guess.  Sleeping, walking, even in the shower, IV tubes were hooked to the deal they put in my chest for mainlining stuff.

Because of certain friends and family, that week can only be described as pure joy.  How that happened I cannot say.  The first day in, Sande the singer, came in with her guitar and we played in my room.  I think it was day 3 when Karen came in with Sande to add viola to the mix.  We played well and many in the ward peaked in, and talked about it for weeks.

The second time I tried to sterilize the harps with listerine–harmonicas for the uninitiated.  As the purpose of the chemo was to run my white cells and most else in the blood production world down to zero, I decided that I can’t really sterilize them well enough.  Too easy a breeding ground for bacteria.
So, when I am out the other side I can play again.  I will still be really careful about keeping them as germ/bacteria free as I can.

Part of my view.  To the left a bit I see hang gliders and paragliders.  That is Torrey Pines golf course, under and beyond the trees. The Pacific beyond. Hard to get a good shot.

So, this process is lengthy.  I only half understood what was happening when I got here.  One thing is clear, had I just refused to check in I would have been dead in days.  Here I am.  So that’s a rather nice state of affairs from that perspective.

Because I had a blood disease before this acute myeloid leukemia hit I am at high risk in many ways. One of which is that it is pretty sure the mutations and such I already have will cause things to go south again left to my own devices.  So, they planned from day one to eventually do a stem cell transplant.  The type that is accomplished by having a donor.  Siblings are often a great match.  But they prefer young people not someone my brother’s age.  He was indignant, but they insisted.

So they search some kind of bank.  That has been in process.

Day 14 they performed a bone marrow biopsy which revealed I was leukemia free.  In remission.  Had I had only AML, that may have been the end of it, other than waiting for levels to come up and some after care.

As it is my levels are taking forever. Just enough red blood to avoid transfusion, not enough white cells to fight much of anything.  But that happens.  I hope the levels begin to rise so they don’t have to do another biopsy to figure out what is going on.  Can’t go home with these levels, yet.  So, here I am.
The good things are that things are stable and I have a room overlooking the bay to recover out of the hospital.  A friend I knew in high school and her husband insisted.

The story of friends and family who have gone to extraordinary lengths is just phenomenal.  They have ensured that people who could give me a cold or other illness don’t come here.  It is not a circumstance in which many can visit.   It just is not safe.

They have helped do everything I cannot do, and was too frozen in depression to do previously.  My cabin and the landlord’s house are up for sale, so that place will be history.  Good thing I secured storage in Alpine before this happened.   So many twists of fate have led to this place and to the great love of family and friends.  I won’t connect all the dots. Either you believe me or not.

In the beginning I did not want to give details.  I was on stuff that amplified the positive and negative, and I could not afford the negative.  True friends got it.  Those who prefer to judge and decide they have a right to complain about how I state things or how cryptic I choose to be, those who use friendship as excuse to vent or control, did not enjoy the lack of info.  And I purposely kept them in the dark.  Caring without respect is bullshit.  It is not caring, but something else.

The old I love you, so now let me criticize and abuse. No more will I tolerate that in my life.

I never knew so much love in or around me existed.  It carried me.

So, I hope the levels come up enough to let me go home for awhile.  Thank God for medicare, and that I reached just old enough before this hit.  And for Lynn the broker who hooked me up with supplemental insurance.  I knew my previous MPN could go south so we figured it was worth hedging my bet.  That paid off.

Thank you America.  This has got to be costing money I never dreamed of ever making.

So, things are positive but require patience and maintenance of good spirits.  As soon as they said I could wear sweats and my own long sleeved T shirts, away with that damned gown.   I have a recliner chair in the room so, when breakfast comes at 7:30 I get out of bed and in the chair.  No breakfast in bed for me! No bed until bed time.  I seem to be one of only a few who don’t hang in bed watching TV.  Maybe the only one currently.  I have yet to watch tv.

I have my computer and I text a lot with my brother.  He is one funny guy. Siblings can have an ability to make you laugh until you cry.   The woman who thinks I somehow saved her from doom in high school is here every day.  Between her and my brother, I get no breaks.  They make me laugh a lot.   Her husband is also right in on this.  It is something extraordinary.

I still get to discuss band issues with Sande, suggesting people to fill my space and such.  She got a very fluid, and skilled guitar player that I kind of pushed for.  I think he’ll add in the long run.  I have yet to hear any audio of the gigs they’ve done so far.  When my friend Richard, the resonator player (dobro), sat in, the band donated all their tips and he donated his cut as well.  There was more than that they sent my way. I know that place and how much I generally took home.  This was almost three times that.  What a tear jerker of a gesture.

So.  That is the deal.  And I could very well get through this, and again be playing sometime.  It could take until summer. But that is how it works.

They have a nice Martin, classical, nylon strings, in the room where I’ll be staying.  So that may be of interest.    When I get to be out of here.  The transplant deal means another month in.   We hope that can begin mid to late November, but this slow bone marrow activity may change that.
Nothing will ever be the same.  Some of that is good.  I cannot be what I was, and how I was.  It was a very unhealthy spiral.  This is all new.  I am highly dependent.  To resent it would be a slap in the face to those who have freely decided to catch me rather than let me fall.

I hope I always feel this love.  It is remarkable.  And remarkable how easy it is to enforce boundaries without much anger involved, if any.

Oh, this kind of chemo leaves you bald.  So much coming out I had it buzzed down to 1/8″  and still losing that.  It will grow back, doesn’t give you mouth sores or make you sick. Hair is the most trivial of concerns.  Got great hats that feel really nice.
That is how it works.  It is going to be a long ride but so much good has come of it.  No matter what, I am better than I was.

Wednesday, November 8, 2017

Home! For Now

Unbelievable.  In a whirlwind of little events, I was discharged today until all is set for final stem cell transplant.  That is what they call it now.  Same thing as bone marrow transplant.

But it is all done through blood, not digging inside bones.  The stem cells get introduced into blood stream and find their way into the bone marrow where they set up shop.  We then hope all is copacetic in the ‚hood and no conflict occurs.

I have as good a match as one can have for a donor so that should help.  No idea who or where.  Later I may find out.  They have their ways.

There is the necessity to go back in every few days for maintenance of the mainline port still in my chest, blood tests, etc.  Even though to me it is as if none of this is real, they are serious about various precautions I must take.   I cannot afford even a hint of cold or flu or that could screw everything.  Blood levels are improving enough to at least clot blood if needed and soon even fight infection.  Even so, all precautions are heavy duty until the whole thing is finished.

I hope it can be arranged in two weeks.  It may take a little longer.  The fact that they are skipping the interim chemo round known as „consolidation“ and going straight to transplant is very fortunate.  It has to do with the lack of cancer and the state of my system.  Had my bone marrow become active sooner I would have gone the usual route.  It just timed right to avoid it.  Hard to fathom but that is life.  What a stroke of real fortune.

So here we are.

2008 Fitzgerald / Kelvin

Kelvin aka Fitzgerald discovers Mt. Helix
September 13, 2005

As was planed, my online acquaintance joined me to finally
„discover“ Mt. Helix, one of my „must visit“ places when I’m in San Diego.
Now, who is „Fitzgerald“? Well he’s a guy with a blog… one of the
many blogs at the now defunct site „journalspace.com“. I found out he was from my hometown, and when he wrote an entry in his
journal about Mt. Solidad, I mentioned Mt. Helix, and he mentioned he’d never been up there. So, together with his wife, we had a date!!

After tearing them away from memories lane, Fitz, his wife, and I drove up to Mt. Helix. the higher we got, the more difficulty Fitz
had keeping his eyes on the road! The view is just soooo marvelous!
and this is the whole view from THE rock!

  They both also got to meet my parents. But first, they met my folks and my home. I knew that he and my dad would hit it off right away because they are both „Navy“ and Fitz was thrilled at all the Navy memories and books, etc., that my dad has collected, and Fitz deals in collecting Navy stuff!
My dad and Fitzgerald inspecting one of my dad’s treasures
Fitzgerald’s wife with my mom
on the way to the Borrego Desert

We stopped at a popular bread store on the way. At the desert we wanted to walk through „Palm Canyon“ a neat place to visit. But on the day we were there the path was partly closed because of weather events some days before. 

 

2005 and 2008, 2009 MrScribbler/was San Diego, then Long Beach, Calif. then he moved somewhere on the East coast of the USA

MrScribbler/Ray Thursday  

Septmber 2005   2008   2009    

For some time now I’ve been writing a journal in journalspace.com, one of the many online journal services available. It was first introduced to me by „fin“ back on my trip to Edinburgh last February.
There are many great, and some not so great, writers at
journalspace. One of the real better ones that I really enjoy reading
was „MrScribbler“. We often exchanged comments in our respective journals, or „blogs“ as they are also called, derived from the word „weblogs“. Since he lives in California it was only natural that we
tried to arrange a meeting. As fate would have it, when I flew over
to California, he was flying over to Frankfurt on a business trip!
Then, when he returned, he came down with a bad cold! Well,
today we actually managed to meet! He drove all the way down from the LA area just to meet little ole me!! how sweet! And it was a very
nice, and much too short visit. I took him up to my favorite spot on Mt. Helix where a nice gal there took a picture of us together, as
proof that we actually DID meet!  

And here he is, sitting on that now famous rock with the view of
El Cajon in the background:

Dieses Bild hat ein leeres Alt-Attribut. Der Dateiname ist 220905Scribby1.jpg
Thanks „Scribby“ for taking the time to meet me!!

2009, San Pedro, California, his „Ghetto by the Sea“

For those of you familiar with his entries from Journalspace I went to visit our own : MrScribbler!

 
On the drive home from Scribby’s…..

2004 Fin

2004 meeting „Fin“

My first JS member I met, in fact he’s the one who introduced JS to me. We met in England together with members of a pilots forum. Being that both of us were pilots we had something in common.

I had never heard of blogging until Fin told me about JS. He told me which other members I should follow and his advice was excellent! Thanks Fin.

2005 Edinburgh 2005

Once upon a time there was a young widowed mother living in Scotland who began learning to fly. She joined an internet forum for pilots, PpruNe, and named herself „Pink Aviator“ (she just loved the color pink). In this forum she would write about her training advances and all the trials and tribulations of attaining her pilots license.

Her writings soon became very popular. Her own forum was put online and her adventures continued. Like me, many other pilots and non-pilots became members of her forum…. and then came opportunities to meet some of them.

My first trip to Scotland was in September 2004, see above.

On this particular trip I was able to meet „The Pinkster“, as we lovingly called her, in person. My report of that trip has nothing to do with JS so I’ll leave it out, but it was quite fun!!

As it so happened, one of her most loyal fans, „fin“ from New York, was planning to visit Great Britain, originally to fly with „Pegasus“ (or „Winged_Horse“ was then called) for a day-trip to Egypt. Since I had vacation already approved for that time, I thought about meeting the two of them before or after that. The trip to Egypt got canceled but fin decide NOT to change his plans completely, instead just go ahead with the flight to Edinburgh.

By the time the date came around more and more members decided to try to meet up with us … in the end it was a marvelous meeting of new friends, brought together via the internet…. and a young woman who had had a dream of learning to fly……

Saturday, January 29, 2005

We walked past the Scott Monument and discovered you can walk up to the top! 287 stairs!. After a short discussion, „Papa-Charlie“, Mrs. „Papa-Charlie“, „Fin“, and I decided to try it.

The higher we climbed, the more fantastic the view! The very last part was very narrow and I must admit, a bit scary. But it was worth it.

Me at the half-way point.

We also visited some other towns near by. The landscape was very interesting. The photo on the lower right was my bed-and-breakfast.
Fin said e always took pictures of McDonalds places on his travels, so here is one we happened to come upon.
Also a helicopter flew above us and we thought it might be another forum member, but it wasn’t
The shadow shows all of us. Fin never wanted to be photographed so this was the only way I could „document“ him
This is another flying forum member I met named „Thumpy“. He later visited me in Germany!
We of course did some shopping and went to some quaint bars. „Pinkter“ was unable to join us, I forget now why, but I did manage to meet some other forum members


Members I Have Met Personally

 

Over the years I managed to meet a number of fellow JS Bloggers personally. Let me share those visits with you……

Fin/ Mitchel F. Rappaport, from Long Island, USA.

MrScribbler / Ray Thursday; used to live in Calif., now somewhere on the East coast, USA

Fitzgerald/Kelvin Cook

Wizardress / Lori Sepp; near Amsterdam, Holland

Justfly / Gwen

Texas friends:

Scott (lowandslow) and Kelly( dcmb01) Park / Dallas, Texas; Betty Hammontree (Likeisaid) and husband Paul ( Hamborn ); Brent Melton (DrStrangelove) and his now wife (Gillardia)

HarpO / Juanderlust; Alpine, California
Janet Stein (Kashew)/San Diego, Calif.