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SurfGuitar101 Forums » Surf Music General Discussion »

Permalink Latest update from Paul Johnson (copied from FaceBook) 9/11/2019

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Hello all; sorry we haven’t updated sooner, but it has been a bit of a roller coaster ride.

I’ve been in treatment for just over a year now for AML (acute myeloid leukemia); I was diagnosed with this disease in late June of 2018, and I’m happy to report that at this time, just over a year later, my oncologist tells us that I am in remission. (I’m not sure just exactly what that means, but I do like the sound of it!)

I want to thank all of you who have offered prayers and well-wishes on my behalf; I sincerely believe that these have been a major factor in my progress against this disease. AND — words cannot do justice to the gratitude my daughter and I have toward those who have pitched in with much-needed financial support, either through our Go-Fund-Me campaign at https://www.gofundme.com/f/get-paul-well-and-prospering, or at the wonderful benefit show that was staged for me last December (one of the high points of my life), as well as by proceeds from the “Stand Up For PJ” CD that my friend Dan Forte (aka Teisco Del Rey) produced on my behalf.

This all began when I was living in Garden Grove (in OC); during this time I did a lot of walking, which was never a problem for me until one evening when I went for what should have been an “easy” walk to the local store, and found myself getting so winded that I had to stop and rest several times along the way. The next morning, out of concern over this, I went to an urgent care facility to find out what might be wrong; they ran some tests and checked me into a local hospital overnight, waiting on the results. The next morning, the doctors greeted me with the news that I was in the early stages of AML.

They then checked me into another hospital (Orange County Memorial) that was better equipped to address my condition. I was there for about six weeks, during which time I was under the care of Dr. Pan — a Godsend of an oncologist (she was a very good doctor) and under her care I received regular chemo treatments. My daughter, Anne (God bless her!), took leave of her job and came down to OC from her home in Tehachapi every Monday through Friday just to be with me and support me in the treatment process. (See details of her role in all of this in her account on the Go-Fund-Me page.)

Following this, I spent several months at the Sea Cliff convalescent home in Huntington Beach; this place was populated by old folks who were, frankly, just waiting there to die. So, although it had some redeeming aspects (good care, decent food, and “my own room” with no roommate, etc.) the underlying aspect here was somewhat depressing. This was lifted by my daughter’s continuing faithfulness to “be there for me,” as well as by frequent visits from friends and family (my three sons were also attentive to lend their support). During both my hospital stay and my time at Sea Cliff, I was bathed in prayer from a number of Christian friends who stood with me in faith that I would emerge victorious from this disease.

During this time, we were earnestly trying to gain admission to the City of Hope cancer treatment center in Duarte, which, we were told, was the best hospital of its kind in So Cal, and “the place to be” for what ailed me; it was our hope that this would position me to receive a bone marrow transplant, which is the best weapon to use in the fight against AML. With the help of Dr. Pan, we were accepted there in November of 2018 and there we were fortunate to come under the care of the remarkable Dr. Sandhu — an oncologist from India who has the look of a swami, sporting a long scraggly grey and black beard and a twinkle in his eye. Upon getting acquainted with him, my daughter and I agreed that we were indeed blessed and fortunate to have him in our corner; and upon getting familiar with the folks there at City of Hope, and seeing how advanced this facility is, we agreed that we could rest assured that we were indeed “in the right place”. Of course, the heart of my trust was in the Lord, as I continued to receive prayer from so many people; all of this, together with my daughter taking on the responsibilities of looking after my needs, allowed me to release concern for my care into the capable hands of God, the doctors of City of Hope, and my daughter, thus freeing me to let go of all of that and concentrate on being at peace through the treatment process.

Dr. Sandhu has seen us through that process all of this time, and he is still our principal doctor. Shortly after we came under his care, he told us that they were indeed seeking a donor for my much-needed bone marrow transplant. Before very long, they found one; I had no idea of exactly who the donor was, other than that he was a young German man (God bless him!). I was then scheduled to receive the transplant in December.

Prior to my admission to City of Hope for the transplant, my experience at Sea Cliff was wearing a bit thin, and my daughter was tiring of the back-and-forth from Tehachapi (in the high desert well-north of L.A.) to O.C., where she had to spend her nights on the couch of either a friend in OC or her brother’s place an hour distant in Marina Del Rey (with gratitude toward those that accommodated her during that period). So she and I purposed to find a living situation in O.C. that would accommodate the two of us together, thus making for a more practical way for her to continue her care for me. In November, she found an apartment in Fountain Valley, which we rented; she and I, along with Annie’s cat (“Jones”) have been living in this place ever since then, to this day (though I have spent a lot of this time living in and out of the hospital and in a rehab facility, as I will describe below…)

In late September of last year as all of this was happening and our money was running low, we launched our Go-Fund-Me campaign, and some of my musician friends came up with the idea of staging a benefit concert on my behalf to raise additional money. Our medical expenses have been covered for the most part by our Medicare/Medicaid coverage, but our living expenses and incidentals add up to about $3000 per month. Thankfully, these money-raising efforts have kept us afloat through the recent months, and we have hope that the Go-Fund-Me will continue to cover our needs in the months to come, until I am ready and able to regain an independent income through various music projects I hope to launch once my health issues are resolved. Also, as I’m improving, my daughter may be able to take on some work projects (she produces music videos and commercials) to bring us additional income.

As for me, my to-do list includes: 1) compiling an exhaustive archive of all my recordings from over the years; there are plans afoot to assemble this into a multi-CD box set for public consumption; 2) write my life-story (autobiography), and 3) launch a YouTube channel dedicated to fans of instro/surf music; this channel will feature all of my personal videos, plus specially created videos featuring performances and interviews, etc., with the top musicians of the genre, as well as other features of interest to the fans; and of course, I hope to get out and play again and do more recording once I am up to speed for it.

I had just moved into the apartment with my daughter in late November, and December was shaping up to be quite a month: the benefit concert was slated for December 9, and my transplant (infusion) was scheduled for the 18th.

The benefit concert, which took place at the Gaslamp in Long Beach, was amazing! Thanks to all the bands and musicians that donated their time to be a part of this event: Par Avion, Hot Rod Trio, Insect Surfers, Mike Vernon & M Squad, Tiki Creeps, Dead Men Don’t Surf, Teisco Del Rey, Slacktone, Galaxies tribute (featuring original bassist Steve Pugh), David Marks (Beach Boys), Elliot Easton (Cars), plus (the frosting on my cake) my childhood hero George Tomsco (Fireballs). All of this could not have happened without my friends and colleagues Jon Blair, Ron Eglit, Kerry Chester, and Tom Potts, who met weekly to make sure everything was covered and things would go smoothly (which they absolutely did), AND the artists and friends that donated items for the auction (Joe Severson, Wade Koniakowsky, Steve Soest, Jon Blair, Norm Daniels, Gordon McClelland and Fender guitars)!!!

The day after this event I began a five-day chemo therapy regimen going back and forth to the City of Hope hospital in Duarte. That Saturday I was admitted to the hospital where I received a pre-transplant chemo treatment that was far more aggressive than the ones I had received previously. This one left me feeling fully wiped out.

On December 18th came the “transplant.” This process entailed taking a sliver of bone from the donor’s tailbone area and then infusing me intravenously with stem cells from the donated marrow. I felt no pain in this process, but I spent the next six weeks in the hospital being monitored to make sure my body didn’t reject the new cells and recovering from the intense chemo and letting my body rebuild blood cells, platelets and some of my immune system so I could go home.

As I mentioned at the beginning of this update it has been a roller coaster ride since then. I have been in and out of the hospital three times (once for falls due to a drug I was taking that caused my brain to get a little wacky, and 2 bouts of colds that turned into pneumonia with other complications), plus in and out of home and a live-in rehab facility where I underwent extensive physical therapy aimed at rebuilding my strength; the nature of the game then was, as it continues to be, rebuilding my strength, as my muscles had atrophied through the long treatment process during which these muscles had fallen into disuse.

I know this is a long update, so I will spare you the tedious details of all that.

I have now been home since late August, 2019!!! Feeling better and getting great physical therapy and occupational therapy at home to make sure I stay out of the hospital going forward. (Through all of this, my daughter has been quite the drill sergeant, making sure I’m doing my exercises properly and eating healthily. I thank God for her daily!)

Dr. Sandhu continues to give me encouragement at our regular visits to his office, where he tells me that my recovery is coming along nicely. So I am happy to be able to tell you that I am on my way back, and hoping to be making music again soon.

Regarding this, I do have to report that as I am just now beginning to pick up the guitar again after all of these months of not playing, I find that I have lost my callouses, and thus I am unable to play well, and I must limit my practice sessions to just a few minutes at a time for now, as it hurts to press my fingers to the frets. (I am reminded by this of my early days of learning the guitar, when I had to build callouses in order to advance in the process.) But be assured that I will “tough it out” and regain the necessary callouses, after which I can move on to getting my chops back, which will lead, hopefully, to getting my “mojo” back…

…And to getting out and playing publicly again, at which point I hope to see YOU! Meanwhile, I continue to appreciate your support via either your prayers, your well-wishes, and/or if you are able, your donations to our go-fund-me page at https://www.gofundme.com/f/get-paul-well-and-prospering, as our expenses have been considerable and we are once again just about out of money. In any event, we want to thank you again for being “in our corner” through this process. May God bless you for that!

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Jeff(bigtikidude)

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