October 24, 2019 - "Saw my PCP Tuesday, hallelujah"

Dear Angels,

I want to say again that if you are receiving this email you are one of the many angels The Most High God has put in my life. I'm forever grateful for this. 

I've promised many, and had more than a few request, that I would keep them posted. So, I continue.

My PCP, Katherine W. Jones M.D., was precisely what I needed since she always trusts my gut and research, as well as my acute internal awareness. The only thing she was alarmed about was when I told her I hadn't had my morning carrot-juice drink for a couple of weeks. She is a very informed, particularly for a doctor, and also knew of my morning eating regimen, which she fully supports--I've been eating plant-based for nearly four years. She admonished me to put the juice back into my routine since it had been helping me have stellar yearly physicals for nearly four years. I started doing that yesterday. She prescribed a new med (muscle relaxer) to try to work on the 'neuralgia type' pain I have behind my right eye. It works a little, but adding aspirin proved to sand off the sharp edges of the pain enough to function...especially eating, which had been affected. I'm slowly gaining weight, and I am hoping to get back the 20 lbs. that I've lost over the past couple of months due to nausea, which I believe is brought on by the headache. I'm a tad better now and actually had a pretty big breakfast with no problems....I only need to take that first bite, and then all is well and normal.

Even though Dr. Jones had nothing bad to say about the oncologist which I had seen, she did say that we can consider that door closed. She wrote me a referral to a very state-of-the-art Radiology Oncologist who uses pinpoint radiation to avoid collateral damage to surrounding organs. She is concerned as I am about this. The esophagus, trachea, and heart are all in harm's way, radiation-wise. It was my idea, but she seemed to embrace it as hers. This is why my sit-down with her was so uplifting and hope-filled.

After I've had my consultation with the new specialist, I'll write more. It's really not feasible for me to send individual emails, or try to talk with dozens of loved ones on the phone. I still welcome responses or questions. I'm not going to isolate that way.

Peace, Love, and Have a Wonderfilled Day,

Ken (a/k/a Grateful Ken)

October 14, 2019 - "Another day off with pay; another visit with a specialist"visit

Hello Angels,

After visiting with the oncologist, I am not feeling so good about my "team". If you've ever had a salesman try to "assume the sale" and try to get you to sign on the dotted line, you'll know what I'm feeling right now. So far, TN Oncology is already sold on chemo and radiation combined. The oncologist I spoke with tried to sell me on setting up the 'port' (for the injections of chemo) before I even sit down with the Radiology Oncologist. Bad form, as they say in Britain. That's my current take. Tomorrow, I push with my PCP for that sit-down she promised if things felt wrong, even just a little, to me.

Warning:  Trying to sell me on something you haven't even convinced me of yet is a good way to raise the warrior in me, and go to battle. I'm not closing my mind, but I'm saying "no" to a number of things right now. Now, if you'll excuse me, I have a ton of studying to do. Wish me luck. I'm actually feeling stronger today than I have in a good while, and am enjoying food again after getting off the narcotics. They were actually increasing the pain and making me sick. Go figure; they worked so well on my shingles last April. Thank the pulmonologist for that info, who is also the most upbeat and hopeful of all those I have seen in the past two months.

I'll get more detailed in the near future, but right now I'm in battle mode.

Love y'all,

Ken

October 9, 2019 - "Further Updates"

Hello Angels. If you are receiving this email, you are one of the angels that God has put in my life. I've left out everyone's address for their privacy. Should you not care, I may opt to send to a long list of folks who don't know each other right now but may wish to contact each other in the future. I promised everyone (friends, loved ones, family) that I'd update as things got clearer. I realized, that I've been unclear due to my not understanding that each specialist I've seen is viewing from their perspective. The biggest picture is not even in yet. In fact, the sit-down (that I may have mentioned) is not with the whole team, but rather as I see them one after the other. So far, I've seen a thoracic surgeon and a pulmonologist who did a biopsy on this lung mass last week. There will be at least a couple more. 

The biopsy showed (and concurs with the CT Scan, PET Scan, and Lung Perfusion Test) Stage IIIa lung cancer. Non Small Cell, which is the least aggressive of the two main types. It has migrated (note: NOT metastasized, meaning not gone outside the right lung) Within a week, the TN Oncology people will be calling to set up my next consultation. All these professionals I've been seeing are in the same group of TriStar Group (I've been to every one of their facilities for all these tests) and are part of the "team" I misunderstood I'd be sitting down with. They'll have access to all the test data, pictures, and samples taken last week. Everybody is very hopeful, myself included. 

I hope this email hasn't shocked you or made you upset, but I have promised to share the ongoing saga. I'm sure I'll be on the phone with many in the coming weeks, but I wanted to start by keeping my promise to update and figured a group-email would work best. I like to be able to edit myself, after reviewing what I've written, anyway. It's my thang.

Even though I don't care who knows this, I won't be sharing it via social media. I'm appalled at the personal stuff I see there, and won't be a part of it.

Love you, mucho.

Ken

September 11, 2019 - "I had my consultation with the thoracic surgeon"

For now, I'll try not to babble, which I'm afraid I might do on the phone. Another reason I prefer email.

The long and short seems to be that all this testing has been to try to discover how well I can handle having an entire lung removed. That's what it appears to be that he is mulling over. They still don't know if this mass is cancer, but I saw how big it is on the CT Scan and it's kinda wrapping around the esophagus and trachea, as well as pushing on the heart sack and chest wall. I've been already feeling evidence of this anyway. The lungs are quite a bit smaller in our chests than I thought. This mass is pretty big, with that considered.

The way Dr. Lancaster described it, the right lung does (approx) 55% of the oxygenating and the left does 45%. Taking out my right lung would leave me short of breath (he fears, in his own words) and possibly on oxygen for the rest of my life. He thinks he'd also have to remove the protective sack around the heart, as well. They want to do a biopsy now because if it's cancer they can treat it with radiation to shrink it and possibly save a little bit of the lung. He remarked that it probably would leave me with esophagitis (I've read enough to know it's no fun) and/or other common issues related to radiation. You can come to your own conclusions; I'm coming to mine. It kinda looks like a lose-lose, even though there is actually a chance this is not cancer. Apparently, a benign growth can kill you, if it starts growing or changing. The surgeon is afraid that this could become inoperable if left alone. Personally, I think that everything he's outlined could kill me just as surely. Sobering, to say the least.

The thing that strikes me is that he is caring and compassionate, as well as thorough as a man can be. He's calling for a sit down with me and a pulmonologist, a cardiologist, and an oncologist to discuss (or maybe brainstorm) options. I'm not making up my mind about much until I chew on this a while, after the last testing and group talk. This is, so far, all about the AMA and Medicine, which is not the end-all by any means. Not in my book, anyway. There are options not related to the (seemingly for this) limited options for the Medical Profession.

I promised I'd keep you guys in the know, so that's what I know (or feel I know currently). Now phone calls won't be so confusing, I don't think. They'll be more Q&A, which suits me fine. I'm pretty open-minded right now, too. I hope I have been clear about what I saw, felt and heard yesterday morning. It's pretty involved. A lot to think about, to be sure.

Love you guys,
Ken

September 2, 2019 - "Putting It Out There"

I've been kind of slow to talk about this, for a variety of reasons but I thought I'd outline what's been happening to me since I promised more than a few people that I would do so.

Back in March, due largely--I believe--to my immune system being compromised, I fell victim to herpes zoster (Shingles) for the better part of six weeks. The pain was horrendous, and the medication I took was very strong, so I may have masked something else that was happening at the same time. By mid-May, I was done with shingles and commenced to do some things that were on my list, including a trip to Chicago to do a deposition in a wrongful death lawsuit involving my deceased wife and a trip to California to do some recon on an annual Music Jam that I felt was going to eventually become a very big and important event. I was on four planes in less than a week. Sometime after I was done with the trips, I had discomfort in my upper right lung, which felt to me to be an infection or something. About mid-June, I finally got to see my PCP for my annual physical. She is the most trusted doctor I've ever had and believes in my gut feelings, so she concurred that even though I am the very picture of health, due to my Vegan-type lifestyle, I may have nevertheless gotten some infection along the way during my trips. Even though all my tests came up stellar, including an "underwhelming" EKG test, she prescribed a Z-Pack (azithromycin) for the suspected infection. It ended up not doing much for the discomfort, and when the chest x-ray came back showing a "mass" in the lung--where the discomfort was, my doctor ordered a CT scan (with dye) to examine it more thoroughly. It was then that I commenced to doing my research. By the time the results had come back and my doctor herself called, I was already prepared to hear what she would tell me.

The mass was larger than something that would normally be considered to be benign or a "nodule"; it was suspected as cancer and I was referred to a thoracic surgeon that my doctor trusted, with the caveat that should anything feel or sound wrong to me to just abandon that path and come back to her to try something different. Basically, she empowered me and confirmed that she trusted my gut.

Because of my history of smoking (27 years ago I quit after thirty years of smoking) the thoracic surgeon said he'd probably surgically remove the mass, but wanted to find out more about it. He ordered a PET scan (radioactive glucose) and a lung volume test. It started to become clear that everyone assumed I had lung cancer and wanted to see how far it had progressed and if it had spread, as well as testing to see how capable I was at recovering from lung surgery. I waited two weeks for the call back after the tests. 

When the surgeon's office liaison called me, she said he wanted to do one more test and then see me for consultation. She didn't know what the test was for or much about it. When I got off the phone, I went straight to the internet and found that the test was normally used to test for a pulmonary embolism. After some more study, and discussion with knowledgable people, I realized how unlikely it was for a renowned surgeon to set a test for three days later and a consultation for seven days after that if I was in that kind of immediate danger, which a blood clot in the lungs would be. So now, it seems likely that he wants to get one more look at the growth of this mass, blood flow, and God knows what else before he makes his suggestion(s) to me. Tomorrow is the test. The following Tuesday is the consultation. I didn't want to worry my trusted friends, but I didn't want to keep them in the dark either. So now you know what I know.

The pain in my right lung area is increasing with regularity, and I can't imagine this problem to be anything that has been discussed yet. On the other hand, I can't say anything for sure. I'm actually in the dark now, whereas I thought I was really clear a few days ago. Life will teach you, won't it?

I intend to keep everyone posted. Maybe see you Wednesday at S.V. Noon (EST). I hope to have good news by then.

Love and blessings, 

Grateful Ken

A Whole New Part of The Adventure

In May of 2019, after enduring The Shingles (Herpes Zoster) for nearly six weeks, I finally took some time and made it out to Happy Camp, CA  to do what I call "recon" on a yearly musical event that I felt was going to finally pick up steam and perhaps become something of a National Event, such as The Monterrey Pop Festival (1967) and Woodstock (1969). As an aside, I think it will.

I flew four times at the end of May, and by mid to late June I started to feel as if I might have picked up a slight infection or something in my pleural cavity, particularly on the upper right side of my chest. Since my yearly physical was due, I made the appointment and by mid-July had another great physical, with the addition of a Z-Pak (antibiotics) for the supposed infection.

When the x-ray came back showing a "mass" in the upper right lung, a CT Scan was ordered, and when the results from that came back, things got serious quickly. I hesitantly started sharing with close friends and loved ones only, but soon began opening up for some reason. Eventually, I would be writing two or so emails a week, to up to 40 people on a Blind Carbon Copy List, to comply with the many wishes to be "kept in the loop".

I have decided to post these all here, to share the story with others and perhaps make a difference in some lives. Mine has become more peaceful, hopeful, and full of Gratitude.

The saga begins to be shared via email in early September, as far as I can tell. I will try to keep this all in order so that readers can either catch up or look up a certain entry or entry time with greater ease.

Typhoon Season On The Isle of Ken

Once in a while, I find myself immersed in a flurry of "storms" on the internal terrain of my life, which I often (lately) call the Isle of Ken. The previous post bears this out, and that "in spades". I'm not saying I wasn't genuinely relating how I felt. I did. But when the storms move on, as everything in Life does if you wait long enough, I am left with some cleanup and find myself reflecting and pondering the changes these strong winds bring in me.

So, Music itself is the obvious center point of the last post. And Music is, and always has been, precious to me. It gives me energy, heals me, lifts me up (♪ when I'm feelin' blue ♫) and just plain makes me happy. The typhoon that caused me to write the last post is passed. I've actually found myself getting back onstage a number of times in the past year. I also had two songs come to me; the first writing I've done in twenty years. Granted, they are simple (very simple) Blues oriented compositions, but the creation process was very cathartic. I'm now asking myself if I really want to cut off my nose to spite my face. Obviously, the answer is a definitive "No". Music wins again.

"My songs are merely dreams
That come visiting my mind
We talk a while
By a crooked stile
You're so lucky to catch a few"
(from the song 'Celeste', by Donovan-1966)