January 4, 2020 - Chapter 4, Part#2 Story of Ken

Greetings, Angels. 

So that you know, my dear-departed wife Bonnie put a plaque (which nearly resembles a headstone on a metal frame) in the front garden/bushes that says, "Angels Walk Among Us", so I guess in my own way I honor her beliefs on this one

For this update, let me start with a joke (admittedly, my kinda unique sense of humor) to set the tone. I ask in question form:

"Do these dexamethasones make my feet look fat?"

If you read my emails, have and use Google, or know something of pharmacology, it will make sense. It's been a rough few days, and I'm sorry for lack of update, but I have been unmoved in that area. Steroids have been kicking my ass.

I'm on Day Four of "Pajama Therapy" (and actually digging it), but I did go out for two short trips. Yesterday, I went to check out some vegan pot-pies, and pick up some other easy-to-make plant-based meals.  Profitable, but taxing. I had to pull the strings loose on my biggest tennis shoes to be able to wear something on my feet. Even walking at home is a chore. Thankfully, tomorrow is the last day of the doctors weaning me of these steroids, so I can actually see the light at the end of the tunnel.

Unfortunately, the dexamethasone my be the culprit in something called Thrush, which is a fungal infection in the mouth that had me in such pain I had serious difficulty swallowing the very pain meds for the pain it was causing. Kind of a Catch 22. Three days later, though, the anti-fungal medication is working like a charm, and I can eat without feeling like the food was first dipped in sulfuric acid. Rodney Dangerfield would say, "Whoo, it was rough I tell ya."

So, after this period of recovery from radiosurgery of the brain, and all these other things, I'll go back to the medical oncologist a week from Thursday. I have no less than six nurses I can always call, too at any time, including a couple 'nurse navigators', in case I have questions or issues (like the fungal infection) or just want to touch base. They are very helpful, cooperative, and caring. They all seem to like their job.

That's what I have for now. Everything else is in "stasis", and I just try to be patient. They are pretty clear, that even though it was pinpoint radiosurgery, it was still brain surgery and I need to recuperate. So I do. I'm grateful for the resumption of my appetite and desire to rest. That's actually huge all by itself.

Thanks for being there, always.

Ken

December 30, 2019 - "Chapter 4, Part#1 Story of Ken"

Good afternoon, Angels in my life. 

I think I like (agree) with the term "story" as opposed to "journey", regarding this 'chapter of my life'. A life I enjoy recounting, at least currently (my dad was a genuine story-teller deluxe) and am grateful to be witnessing. It's chock full of miracles, for instance. I mean, I almost literally dodged a bullet by one millimeter, in terms of the brain lesion, for one thing. On top of that, the radiologist's office is confident (80%) that they got every bit of cancer in the brain. (I believe it's their nature to be conservative)

After talking with three of my different doctors' offices today, I am done with all those calls today, and can now just chill. I needed that.

Evidently, all that has to happen now, is my weaning off the Dexamethasone (a steroid) and then the resumption of the treatment for the lung mass. I heard there is a 50-50 chance of it returning to the brain since the mass is continuing to pump oxygenated blood to the organs. The brain especially demands this, and the blood can be tainted with adenocarcinoma cells. It wouldn't be as critical this time since they proactively put a plan in place for that contingency. Still, the order of the day is, as Larry The Cable Guy says, "Git 'er done." I'm ready.

Everything else remains in stasis, which I won't belabor today. If, however, anyone has any questions or what-have-you, please feel free to send me a message and I'll be as clear and thorough as I can at the time.

Thanks for 'listening', and for being there.

yours genuinely,

Grateful Ken

p.s. also feel free to share this info with others, as you see fit. I do not intend to hide out about this situation. Well, except for social media, which I think I've been clear about. I'd see that as just plain wrong.

December 27, 2019 - "Chapter 3, Part#4 Journey of Ken"

Evening, Angels.

I almost feel a little silly even posting tonight, although the peaceful feeling I have (fueled a tad by lack of sleep and--oddly enough--my continued, childlike resistance to encroaching slumber) has me in a very nice place, indeed. Due to this relaxed state, I am now getting an extra hour or two a day of sleep. Probably five hours total, instead of 2 or 3. Progress, I'd say.

Nothing I've been told to be watchful of, in terms of adverse effects of radiation, has been happening to cause distress. On the contrary, my discomfort is all the usual, some unrelated, stuff involving my pain. I still take 1000 mg of Tylenol, but now it has increased from every 8 hours to every six, to finally every five or so. There's what they call "referral pain" in the chest nerve bundles and the occipital neuralgia in my forehead that I feel I have to deal with definitively. Fortunately, Tylenol quells it enough for me to say that my level 7+ pain is usually decreased to about a 3, with its help. Every other drug is out, contraindicated, or interactive with the steroid I take. Welcome to my world, for the time being. 

Christmas was pleasant, and I made what ended up being a huge vegan lasagna that Steve and I are still eating off of. It will probably last the entire weekend. No shortage of food here in the house. Since doctors are all unavailable for the weekend, any questions (and I don't have many) will be postponed until Monday. Totally fine by me. I am going to just chill and enjoy having nothing pressing to do for a couple of days. Technically, I've been approved for LOA/FMLA until October of 2020, so if I chose to I could just not go back to work until then, 1/2 pay notwithstanding. It's always something, isn't it? I'm beyond worrying now.

So, I'm going to go back now to just chilling and wish you all a wonderful weekend, and probably hold off on updates until after some Monday phone calls. I've decided to initiate communication if I'm not contacted first. Pain meds will be on the list of questions, as well as proposed scheduling for treatment. As it sits, it's likely that I'll be having 5 days per week of proton radiation, in conjunction with chemo, for six or seven weeks, for this lung mass. That was the last estimate by the medical oncologist.

I continue to thoroughly enjoy all contact of any type or amount and promise to answer (sometimes at considerable length, I know) every email, text, or message. For now, I'll continue to forgo voice communication. I'm feeling better than before, but not by enough to risk a coughing spasm which increases my pain. They say pain's a great motivator, and they are right.

Bless you all, and please accept my love and gratitude.
Ken

'

December 26, 2019 - "Chapter 3, Part#3 Journey of Ken"

Dear Angels o' my Life, 

I'm so glad Steve came in for the after-treatment consultation. He was as lucid and clear as I was not. My sleep patterns (such as they are) are erratic, to say the least, and I was just too beat and tired to be as clear at the time as I wanted to be. Most everything is coming back to me, and Steve is there to clarify and give his take on nuances that I missed. 

I was given a short list of things that the brain might do, as it recovers from the onslaught of radiation, but I felt it to be little more than that just that: A list. Anything serious, like stoke symptoms, would be a reason to go directly to the ER, but I felt no indication that Dr. Rosenblatt had these concerns. He just read me the rules, is all. 

As it turns out, cancer of the lung is not lightweight. The lungs supply oxygen to the brain, which craves oxygen as much as any organ in the body. A while ago, on the latest MRI, I was even shown the blood vessel that probably delivered the cancer cells to the brain along with the oxygenated blood. It makes more sense to me today, as to how this happened in my head as it did. This wasn't merely "roving" cancer cells; they were hand-delivered by the lungs, which--even though we know it's a cancerous tumor--the body itself views it as just a part of the lung. Cancer is a trickster, and an imposter, apparently. Enough about the workings of it; Google is your 'friend' if you let it be. You can learn so much without having to talk to a specialist, as I did.

Steve asked Dr. Rosenblatt, the radiologist, what the status was. A question was, "Is this now 'arrested' or 'quarantined'? The answer was clear:  The cancer cells have been mortally wounded. (there's my little Mercenary metaphor for ya) It will take a while (weeks, likely) but they will finish dying and be removed by the body itself. I had hoped to hear that, and it gave me comfort. I wasn't looking forward to anything invasive in my skull. They are very sure they got everything there was/is in the brain, concerning this cancer right now. What did concern me, though, is that there is a chance of it 'coming back' the way the first tumor came. Fortunately, they are already proactively going to watch for that, and nothing will be as immediate or large enough to be of similar seriousness. So, I'll choose to remain hopeful, and go for my first periodic MRI on Feb 6 to see what's going on in this head of mine. Meanwhile, I'll be weaned off of the steroid (the reason for swelling feet) over the next few weeks. We're done with this particular lesion.

The question of the hour is, "When do I start getting this treacherous mass in the lung dealt with?" I've decided, for the moment, not to try to chase down the answer but to let TN Oncology tell me when all this is going to commence. Probably pretty soon, I would think, based on it having become troublesome already. I'll let you know, obviously. My "journey" is an open book. It may even end up as a portion of my book "Memories From The Path", which is really in blog pieces right now. I registered the ISBN years ago, under that title, thinking I would have the book done in a year. That was over a dozen years ago. "Best laid plans", comes to mind.

Thanks for all you are in my life today, and for 'listening'. I still prefer to just lay my cards on the table here. It's cathartic, I think.

Love you truly,

Ken

December 26, 2019 - "Chapter 3, Part#2 Journey of Ken

Thanks, everyone, for weighing in on who gets the emails where SPAM is not an issue. The couple who had those issues have circumvented it and I don't feel my messages are languishing in some far-flung recesses of Cyberspace.

I can't sleep past two hours or so, as usual, so my trip to my third radiosurgery will be on less sleep than I had hoped, but it will be relatively pain-free due to the timing of my OTC meds. (basically, of all things, Tylenol) I'll give a more detailed report in the afternoon, I imagine. The very treatments, themselves, are pretty uneventful. Even the after-effects are nothing astronomical.

I needed to reach out more often than usual, this morning, so I figured a little bulleted list would be okay for now.

• The few errant hairs that came out were probably the usual hair we all lose on a regular basis. No progression there.
• The pain is about the same at any given time, and I often just take my meds early, with a "what's the difference?' attitude.
• I'm open to any questions, comments, etc, at any given time. I love the opportunity.
• The emotions are still a tad odd to me, but not out of control, per se. Not much tolerance for BS, but no desire to lash out.
• New questions for the current team, due to running out of a drug that you shouldn't just stop abruptly, and swelling of the feet.
• Appetite is good, actually better, than in a long while. I'm back to grazing all day. Not gaining much weight at all, either.
• I now have a thorough list printed for the oncologist to review, to see if there are any supplements I need to continue.
• I'm totally surrendered to the great 'team' of doctors and their expertise now. They will act as my "higher power" for now.

Still grateful for all of you in my life right now Thank you for your continued support, and kind words. I still really like calling you all my "angels", knowing that some are a little 'resistant', to use a word. So sue me.

Love genuinely,

Grateful Ken (as I have been known to call myself lately)

p.s. I used to drink alcoholically for many years. I have adopted this credo for the past 23 or so: "There is nothing in my life, so horrible, that I couldn't make it worse by picking up a drink." I think that must land somewhere, in a heart or mind, or I doubt I would have added that to this communique today. See you in the funny page, Angels.

December 23, 2019 - "Chapter 3, Part #1 Journey of Ken"

Angels, Friends, and Loved ones,

Mostly, I know that folks are receiving these emails. Some, due to time constraints, and the fact that not everyone checks their emails with any frequency, have not responded lately. Until yesterday, I just assumed it was the usual busy life we lead, and what I just mentioned until I found that some of my recent emails are going into certain peoples' SPAM boxes. I have nearly forty names on the BCC side of this list, and I fear that this one friend might not be the only one. So, please do me a favor, if you will, and respond with "Got It", "Received just now", or something like that. Those who don't will get a short direct (not pasted or copied) email telling them to check their SPAM folder, where my emails were shuttled off to in this recent incident. I think once an email program gets your name as a spammer, it rejects ALL mail from you. I didn't want that to go unnoticed.

So, the saga continues. 

Last night, as I was preparing to shower, I got a hair in my mouth which is not uncommon. I usually pull it back nowadays in a ponytail that (for the first time in my life) is almost literally halfway to my ass, and occasionally hairs get free of the ponytail and brushing and an end floats into my eye or mouth. After attempting to sweep back a couple of these stragglers, I realized that they were no longer attached. The hairs had fallen out. This was something I'd heard about, regarding radiation, but still surprised me. So that's one new thing. As for the 'blip' I mentioned a time or two in previous emails, regarding emotions, I've noticed now that--although I'm actually very low-key, mellow, and relaxed lately--I am much more uncharacteristically emotional. I can cry at the drop of hat, or laugh similarly, for what appears to be no reason at all. Laughing at sadness, and crying with joy. Also, a tad odd. I just wanted to share that side of this "journey", since some find it as interesting (and amusing) as I do. Again, just Google "right temporal lobe function", or some such. I'm still reading about it since there were over 6,250,000 hits on that query.

Last night, around midnite, I set the alarm for 6 am, so as to leave plenty of time for the rush-hour drive to St. Thomas, but awoke at 2 am in pain, as usual. I get around two hours in a row, generally. Sometimes, that's it and I just take my OTC meds and push on through it. Today was that version. Laying on the table for the otherwise uneventful 15 minutes was nearly torture. I made it through without incident, save having to have a coughing spasm before we commenced, and then asked a few pertinent questions. One has been on my mind (and many of yours) for a while:  "What is the main reason for Proton Radiation being put off for now, and does or will it interfere with the radiation I'm getting either now or perhaps even after the fact?" The radiologist gave me the definitive answer: The reason I'm getting two days off between these three treatments, is that this (very) high dose of radiation requires my body to be given time to recover from the effects. More of any type of radiation right now would be a very bad idea since the body would be taxed beyond reasonability. The healthy tissue in the brain, he mentioned, needs to recuperate from the radiosurgery, as pinpoint as it might be.

What this all tells me, is that my bullseye markings will not go to waste. I'll be more than likely getting the Proton Therapy and chemo that was halted at the last moment when they discovered the brain tumor. And, based on my pain and shortness of breath, I am actually hoping the sooner the better. These beautiful people are so bent on saving my life, that I feel that they have the exact same desire as I do. Get it done now! One more treatment to go, the day after Christmas, and I'll wager that I get called in for my first dose of chemo in my new portacath, which has thankfully healed enough where I barely notice it, much less find any discomfort with it.

Merry Christmas to all, and I'll be in touch after my Kwanza Day treatment.

Love and Blessings,

Ken

December 21, 2019 - "What a difference a day makes"

Wishing you a good morning, Angels.

I've been doing a little research again, due to my having some odd experiences with my cognitive powers, so I'm moved to share a little differently right now.

I think most everyone has had the experience of opening a package of chips, crackers, or something like that and having the glued top of the bag cooperate and separate perfectly so that you can take what you want out of it, and then reseal it with a "chip clip" or something to keep it fresh. I also have to assume that we share the experience where it doesn't cooperate, and tears open in such a way that you have to put it in a new package like a zip-lock bag or something to keep the remnant fresh. Yesterday, after waking up hungry after a two-hour nap, I had the latter experience. My reaction was not normal.

I have been approved for LOA/FMLA at work now until October of next year, if necessary. While I have some vacation time left on the books, I'm using it to stay solvent and not have to go into work at all. Being in pain, and feeling unable to breathe, preclude my even considering it right now. But even being able to nap as much as I like, and whenever I like, I resist it like a child; partly, because I know I'll wake up in one, two or sometimes three hours with pain, discomfort, and lately disorientation. But after I woke from a two-hour nap, I was hungry enough to push past the pain and grab a new box of Stoned Wheat Thins (how very appropos....stoned) which have zero sugars. If you care to, do some genuine research: Sugar, especially in quantity, is both nerve poison and basically 'cancer food'; neither of which is something I'm going to be doing anymore, whenever possible to avoid. Anyhow, my reaction was to get all upset and nearly break into tears that I had done something horrible and irreversible. Now, that's what I call an "odd reaction". Luckily, it passed relatively quickly, but it unnerved me to view myself acting like a doddering old fool. Mick Jagger was right:  "What a drag it is gettin' old."

As an aside, and hopefully a point of comfort for you, I am entertaining a very simple tack in my powers of perception: I'm watching all this from the place of "Awareness", and enjoying the ability to witness the mind, body, and brain do their thing without getting too identified with it. I'm NOT the doddering old man; I'm just watching the movie. Still, I had to learn more, since I am now discovering that the radiation continues to "work" even after the treatment itself. Here was the first info of over six and a quarter-million hits on Google search. I'll, of course, be studying quite a bit more. I'm more of the technique of reading dozens of peer-reviewed journals and papers that both agree AND disagree with my suppositions or personal opinions and leanings. I owe it to myself to be informed fully, and not just allow the comfort of "agreement" with some personal favorites.

What is the right frontal lobe of the brain responsible for?

The frontal lobe is the part of the brain that controls important cognitive skills in humans, such as emotional expression, problem solving, memory, language, judgment, and sexual behaviors. It is, in essence, the “control panel” of our personality and our ability to communicate.

Finally, this email (and to a lesser, and much more limited way. my text messages on the phone and Facebook) are my lifeline. Much as I am almost overwhelmingly compelled, I just can't chance phone calls. So, that said, please engage me as much as you like or can. I love reading and writing letters/emails. I relish it. I'm hesitantly and humbly reaching out here. My guru asks me, "Can you bear your own Silence?" An excellent question, which I ponder regularly, but it is what it is.

It appears this could end up being a kind of bumpy ride, so either strap in or bailout. As I've said: No harm; no foul. I'll understand. I'll keep sharing, in any case.

Love genuinely,

Ken