November 20, 2019 - "As I learn more, I'll share it with you

Hello, Angels.

Today, I went to the facility where I had the PET Scan in September and picked up my complimentary copy of the images and two-page report. I'll take it to the Radiology Oncologist tomorrow for their files. They should already have all the other tests and updated X-rays by now, from my PCP's office and I've filled out all my paperwork online and submitted it, so a fifteen-minute sign in is all they seem to need from me. That, and my copay. Initial conversations with a very informative and helpful financial department served me well, and my fear that the fees would be in the tens of thousands of dollars were put to rest. It will probably be thousands, but nothing like my initial thoughts. It's pretty state of the art, and there aren't many facilities that do this version of radiation, so it's understandable. Thankfully, Medicare covers 80%.

I'll write more after I have my visit tomorrow, and have taken some time to think about what I'll learn. Meanwhile, I have a couple of funny thoughts to share. First, in response to "You're in my thoughts and prayers", I like a very funny comedian from my home town of Chicago who kinda dealt with it in a dark-humored way, which is right up my alley.

https://youtu.be/6gP8B8CFL8g

On the subject of "If there's anything I can do...", for just a brief moment I thought about starting a Go Fund Me account, and responding, "If everybody threw in five or ten bucks we could knock these copays right outta the box." Much as I like irreverent and dark humor, I thought better about that one pretty quickly. I don't need anybody's money. This whole "life event" is in bigger hands and much better control than anything limited to this Earth, as I've said before, and I genuinely believe that.

I hope my macabre sense of humor hasn't put anybody off too much. I am full of Gratitude, but also some other traits.

Love and Blessings to you all.

Ken

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November 14, 2019 - "Quick Update"

Good morning, my angels. (not mine, exactly, but I think you know what I mean) Many want me to communicate any changes, large or small, so I thought I'd mention a couple of things.

Having a broken phone, for the better part of two weeks, put me behind the eight-ball with getting messages on the number that most people have. This, unfortunately, includes all the doctors. Thank God I had my new phone in time to get the message from the very busy office of my PCP. They pulled some strings, and I'm going soon to the Radiology Oncologist of my choosing. He was booked up way into the future, but somehow my beloved PCP got me in a week from today. I've just filled out all the paperwork online, and I'm all ready to consult. I look forward to it and am glad it's on one of my days off. The timing of the phone and things like the scheduling I just mentioned might seem to be 'fortuitous' to some, but I see no accidents or coincidences involved here. There's a larger plan in play, I believe. End of sermon.

I went to the Pain Management Group appointment yesterday afternoon, and am impressed with the doctor on my case. He coupled his knowledge with the info I gave him, about this headache, and came up with a diagnosis that totally makes sense to me: Occipital Neuralgia, unrelated to my cancer. He said he's told his patients, "It's possible to have two unrelated things going on at once." I think he's right. After I consult with the Oncologist, I'll know better what I'm going to do about this chronic headache. Options include a nerve block and a small dose of nerve-pain medicine, which according to my research--so far--seems prudent and relatively problem-free. At least the meds are seemingly safe, is what I mean.

Thanks for all the prayers, good wishes, and comments. I have much to be grateful for, including you.

That's my story, and I'm sticking to it. (for now)

Love always,

Ken

November 6- 2019 - "No news is NOT bad news"

Hi Angels,

I've been thinking that maybe my long emails are not helping keep things clear, so I'm going to attempt to shorten them. Starting with the subject header above:

• no news from me indicates that nothing new is happening or has happened
• there's very little change in how I feel on a daily basis
• I'm still "in the waiting room" for specialists on the list, including the Radiology Oncologist's Office
• I see the Pain Management people in a week (for my unrelated neuralgia)
• I've been going to work without too much difficulty
• my brother is moved down here to help and support. This was planned before any of my health issues appeared
• I'll continue to send updates as things occur or pan out

Early in my sharing of my personal 'journey', regarding my health issues, a friend said, "You are now going to find how many "experts" you have as friends, family and loved ones. So, if you come up with anything, know that you'll likely be putting a smile on my face since there's no way I could follow all the advice I get at the same time without actions conflicting. I'm going to have to follow my heart on this one. I believe I'm in good hands, and not ones found on this Earth.

I genuinely appreciate all the love, care, comfort, and attention folks are giving me on all this. I'm one grateful guy.

Love,

Grateful Ken

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