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.
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.
He was sure I brought him there just to toss him over the edge. Now would I be so cruel? Don’t answer that!
The whole landscape reminds me a lot of Egypt and my tour there last January. Perhaps that’s the reason why I like Egypt so much… it’s so much like this place.
There were some folk out there camping and painting and one gentleman was kind enough to catch the two of us together.
Well, John survived the cliffs and on our way back to Borrego for lunch we stopped by Peg Leg Smith’s monument. Now, you’re supposed to bring 10 rocks and add them to the pile in order to find the goldmine. Well, we didn’t bring any with us, but there were enough lose ones around so John just picked up 10 of them and added them to the pile… needless to say, we didn’t find the goldmine. If you look close, you can see the rocks flying through the air……
We then drove back home, this time over a less winding road. I think John enjoyed the curvy, winding roads more then the view at Font’s Point!
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!
I found out, by chance, that John died…I think in 2017. So I checked his blog, which I hadn’t read in awhile (shame on me) and discovered that he had had cancer!! He wrote about his experience as well as his stay in the hospital. And I missed all that and had so hoped to meet him again. Especially since he was a great harmonica player and stupid me I didn’t ask him to play for me!! Grrrrrr
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
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
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
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
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.