Chapter Nine, Post #1 Story of Ken

Dear, dear Angels,

Due to my physical energy, difficulties with my typing and piecing together of info over the past month, you'll probably read this ten times fast than I'll type it. Luckily, Google will archive it until I and finished and send it. There have been a few twists and turns over the past month, so forgive me for not sending out any updates.

The first few days after chemo set the tone for my stamina and physical discomfort, so I did less and less but just try to hold the line. The next month has been a blur and I have no notes to speak of. There were some great findings, after the follow-up MRIs and CT scans of the thoracic area and cranium, so I'll mention those. (the later follow up was probably 2 to three weeks after May 20, the date of my chemo.

The chemo actually commenced after an earlier (Feb 13) CT scan, looking at the work done on the brain by the radiosurgery in December. The brain showed that the original lesion was dissipating (being disposed of by the body), which was great news, but a goose-egg like a lump under the scalp that had been presumed to be something else was now being viewed a cancerous tumor since it had grown. While I waited and chatted with Rita, a few friend in administration at St. Thomas, The Radio Oncologist, Dr. Rosenblatt consulted with Medical Oncologist Dr. Blakely about the new growing mass. Rather than treat it five times (like the lesion) to get rid of it and the pain (believe me...the most painful part of my morning every morning requiring morphine pills every 4 hours) it was decided by both of them that the "chemo-cocktail", as I like to call it, was designed for a variety of types of cancer including that, and that going ahead with chemo the following week would prove how well it worked. It made sense to me so I agreed. 

Note of not-so small-miracles: A few weeks later, the new scans showed the brain free from any signs of cancer and it was obvious the new mass was now nearly 100% gone, and totally pain-free. Johnetta Blakely is a Cancer-Sniper of World Class, in my book. Other body-cavity MRIs showed no spread of cancer either. So, I continue basically to recover from chemotherapy. 

A couple of weeks later, shortness of breath became a real issue so I called the Oncology Hotline and they recommended the ER. I went right away and, they found me to have pretty low blood pressure and evidence of fluid on the lungs. The ER Doctor ( a cool guy and intelligent one) told me it was not good to send me home without dealing with such low blood pressure and talked me into being admitted into the hospital. I agreed.

I ended up staying a week, and not much progress was made, at first. Eventually, as the fluid went down, along with the swelling in the ankles and feet, and the blood pressure became reasonable enough for them, they opted to release me. I'm back home with Steve, and some new medicines, and am in good hands. They even set me up with home health care visits for all the technical stuff and monitoring of meds and vitals. They are even on call 24/7 if need be, so I'm recuperating as fast as I can by doing everything as right as they suggest, and feel more than just "well supported". Dr. Blakely has wisely chosen to postpone any more chemo until the body is sturdy enough to handle it. She said, "Chemo's meant to help you, not kill you." So, we all watch the numbers. I even bought a new blood pressure machine. (only to find that the one I had was just fine.) We state-o-the-art baby!

I don't want to start whining, but every sentence of this email required multiple editing and was very taxing. (i refuse to write crap, even in an email) Meaning, there probably will not be a steady flow of them. I am still available by all means, individually though. I prefer to keep the phone calls themselves to a minimum, but it's not NEARLY as problematic as it used to be. Still, it'd be best to pre-arrange any phone call.

I love and thank you for your patience and support. (and messages and cards) As I like to say, "It's palpable", meaning actually felt in my physical body. 

Peace and Health and Happiness to you.

Grateful Ken

"No chemo until further notice"

p.s. I'm in love

February 20, 2020 - Chapter Eight, Part #1 Story of Ken

Good Day, Angels. As a quick reminder, if you are receiving this email you are one of the many angels that I believe have been placed in my life for the benefit of all of us. I just wanted to share that again.

I'm still a little tired, from lack of sleep, but I thought I'd send a recap of my first experience with chemotherapy. The pain in my chest just kept me up last night and I got about 3½ hours of sleep. It isn't the first time I've had to make do on little sleep, and so it wasn't unfamiliar territory. Tonight, after a two-hour nap, I'm still feeling what I would call exceptionally normal, especially considering the ordeal of getting more than a handful of bags of chemicals put in my body. More on that in a minute.

The treatment room was more like a huge 'salon', with 16 or 18 recliners spaced respectfully apart. Each of about ten of us was assigned a nurse for the length of their treatment and the one assigned to me, Hailey, was a genuine dear. (as were they all, actually) Dr. Blakely was said to be pretty busy, so she had an assistant, Sarah (who is an NP) see me and do a quick physical and respond to some of my questions and tell me about the lab info from the blood draw that they had taken shortly before. I was good to go.

Then, as Hailey was preparing to hook me up to the first chemical (one that takes the calcium out of the blood and puts it into the bones) she gave me a couple of information sheets about the drug. Shortly after the explanation, she went away (to get the bag, I thought) and came back with new sheets. It seems that BCBS of TN denied the first drug (which it turned out would have been administered by injection) but prefers a second one, which actually does the same thing and is administered via the drip technique. We still had to wait for a short while for them to put their okay on it, even though they were the ones that had the preference for it. Insurance companies.....sheesh. After sitting there for about a half-hour or so, Hailey came back, explained the new info sheets and hooked up a bag with the preferred chemical. "NOW we're moving", I thought almost out loud.

When Hailey hooked me up, it was to an actual machine that pumps exactly the desired amount calculated to work on me and takes exactly the amount of time they want it to. Very precision. No more using little plastic gateway clips to approximate this procedure. I was duly impressed and asked a few questions. I also mentioned that the pain in my chest had kept me up most of the night and that I had brought some Tylenol with me unless they preferred to give me some from their supplies. She said she'd check on it with the doctor.

The chemical took about 1/2 hour, which would take me to about a half-hour before I had scheduled my Tylenol. I keep a little log book for safety's sake. After the machine alerted her that it was done, she started a one-hour bag of an immunotherapy boosting drug. I'm learning a lot as we move forward; I read the literature and ask questions. At about 10 am I told her I was now feeling the pain enough to remind me of my regular dose of Tylenol, so she came back in a couple of minutes, flushed the portacath line with saline for a minute, and then administered some pain killer. I'm familiar with Dilaudid, from my pancreatitis attack in 2011, so I expected instant relief and euphoria, but it must have been a very small dose. It worked as good as Tylenol, though, so all was normal in my world. Some things one just doesn't have any control over. I'm cool with that.

The next four bags followed an injection in my abdomen. (the literature had said 'stomach', which painted an unpleasant picture in my mind) Fortunately, it stung for a moment and that was it. The drug was an anti-nausea medication that lasts up to five days. I'll be the judge of that. The next four bags started with a combination of a steroid and an antihistamine, as I recall. They made sure I had a driver since the antihistamine can cause drowsiness. While my brother Steve lives with me, that's not a problem and they have his number. He's also listed as my emergency contact.

After that bag was emptied, I had the 3 bags which comprised the 'chemo cocktail', as I call it. They are all chosen to chase down any errant cancer cells no matter where in the body they may have migrated to. I'm also told they will shortly take care of the pain and discomfort. Again, I'll be the judge. I'm not being cynical here, but each of our bodies is unique. I'm hopeful, as usual, since that leaning seems to be embedded in my makeup. There's a trust I can't explain, and I think it's born of Gratitude.

All through the six-hour session, I would see doctor Blakely (Laura Johnetta Blakely, known as L. Johnetta or just Johnetta) come in with other patients who were scheduled for treatment. (mine was a longer session than most, and stations were left vacant after only an hour or two mostly) I'd always look up, and after she had directed them to their spot and she was leaving she would smile at me with sparkling eyes and ask how I was doing. I would respond in an upbeat way, and even ask her how she was doing, to which she'd reply, "Livin' the Dream", and keep walking. She's not as "pretty" as many of the other doctors and nurses, but she's very attractive to me in a tomboyish kinda way. So, this thought entered my mind that since doctors have to avoid getting attached to patients who might end up dying on them, she turned me over to Sarah because she's falling for me. Ever since I saw her one Friday late, dressed in blue jeans, I've probably been sending unseen but palpable signals, I guessed, and I must have started some sort of synergy. 

Now, after you've had your laugh (my intent), know this:  I'm a singer/songwriter/musician/artist and love my daydreams and fantasies...they're as natural for me as breathing. They ♪♫get me through the night♫♪ (or day, in this case). I just couldn't resist sharing that one with you. {I still think Johnetta is way hot, though)

Even though my sense of humor is intact, and I have enough energy to sit down and write a long missive-type email, I'm not pumped up the way they predicted I would be from the steroid. (dexamethasone) In fact, they predict that on Day 3 (Saturday) I will crash off the steroid and not wanna get out of bed. I guess we'll see. Heck, I'm on for the ride, right?

If you actually took the time to read this entire update, thank you. I appreciate the opportunity to both share, as I've promised I would, and work on my writing skills. I still have two books on the back-burner.

I am grateful for all the emails I get reminding me of the prayers, love, light, positive energy, support, and compassion that's being sent my way on a regular basis. Quite a number have gone so far as to say that my strength impresses and even moves them to emulate this in their daily lives and life struggles. I couldn't be more honored and glad.

Stay happy and be well,

Ken

February 13, 2020 - Chapter 7, Part #1 Story of Ken

Good Morning, Angels.

I decided to go ahead and continue using the week of my update as the "chapter" and the entry for that week as the "part", hopefully, to keep these emails organized. Perhaps this is more for just me, but it may aid in searching for specific information. That's my excuse, and I'm sticking to it.

I don't think I have yet mentioned that all insurance companies have resolved any issues that were slowing up the works, but in essence, that is what has happened. I'm glad to say that there are no current insurance problems that involve any waiting for treatment or testing. This makes it easier for me to just follow a schedule and make more definitive plans. 

Today was the day of my latest MRI of the brain, which was ordered over six weeks ago for the purpose of checking to see if any cancer had returned to the brain and to check the status of the lesion that had been zapped with radiosurgery during the three sessions around Christmas. The results were positive in both regards. The lesion continues to shrink, indicating that they destroyed the cancer cells and that the body is ridding itself of the residue. Other than that, there is no evidence whatsoever that the brain has any new incidents of metastasis. No evidence of cancer in the brain at all. The neurosurgeon was pleased, and I have to admit I took it as great news.

If you ever have an MRI, I have a little advice for you. If they give you little sponge-like earplugs to dampen the noise, shove them as deeply into your ear canals as you comfortably can. I didn't do that on the right side and had to deal with a little more volume than necessary. I suppose I could say that luckily I'm used to loud music over the course of my life and it wasn't too much to bear. Still, the noise wasn't music per se. That is unless you consider outer-space like sounds to be music. Actually, I ended up playing with the sounds in my head and finding the musical patterns, thus keeping myself distracted enough to make it through the twenty-plus minutes of the machine sounds.

In the past six months, I've had many injections of dye, contrast, and radioactive substances injected in me for all the tests of this type, and there are more than just a handful. So, I have taken to drinking about two gallons of water a day to facilitate the flushing of my system. Everything I understand is that it's a good practice anyway, and I am certainly one hydrated individual.

Next Thursday, I'm going in to start the aggressive chemotherapy that has been continually postponed during all these delays, starting with the surprise brain issue and continuing with the insurance issues. Nothing appears to stand in the way anymore. I'll continue to keep my loved ones (you, whom I call my angels) apprised of the process and such. I'm hoping my stamina will help me tolerate this part of the story. It's necessary, in any case, since the cancer has already shown itself to migrate to other parts of the body.

Thanks for your continued support, prayers, good vibes, light, and Love. I'm one grateful son-of-a-gun.

Love genuinely,

Ken

February 6, 2020 - Chapter 6, Part #1 Story of Ken

Good evening, Angels.

Yesterday, I got a call in the late afternoon from the radiology department at St. Thomas. There evidently was a glitch with the insurance company confusing some information, and I was asked to call this morning to verify that the problem was resolved before I came down. (it's about a one hour drive from my house) My reaction, though not all that emotionally charged, was so immediate that I had no resistance to the thought, "Well....here we go...." That makes three insurance company snafus in one week.

So late this morning, I started calling and began getting an automated message that all the phone lines were tied up (or something like that) and later just started getting a busy signal. Finally, I called the neurologist's office to see if they could get through to radiology and find out if we were all still on schedule. I was to get an MRI, and then a couple of hours later see the neurologist to discuss their findings. A very helpful gal, and one I had personally seen 'work magic' with the system, took my problem on and told me she'd call back once she found out something. A short while later, it was confirmed that the insurance issue had not been resolved. We scheduled the two visits for next Thursday and I went back to my daily routine, after making sure I had noted the new date and time for the appointments. Within an hour, the radiology department called to tell me that everything had been straightened out and we could reschedule however I wanted. I told her that it was a done deal (for next Thursday) and thanked her for letting me know so quickly. She checked the computer and saw the new appointments, confirmed them, and thanked me for my time and patience.

What I'm discovering, is that all these people are kind, gracious, helpful, and I might even add compassionate. They are like you and me; they work (most of us, anyway) for an organization much bigger than ourselves and too often get caught in the middle--left and right--trying to help people wade through what often appears to be unnecessary bureaucratic red tape. They are doing their very best, most of them, and I actually feel sorry that they are put in that position. I guess their compassion has infected me, yes?

So, we're down to two insurance companies tying up loose ends (or whatever it is) and I'm at least scheduled for next Thursday, the 13th, for an MRI of the brain, and a consultation with the neurologist to discuss the findings. I suspect as things fall into place, that the information will come in handy once I see the medical oncologist and start the chemotherapy. It appears that way, in any case, since the major concern is metastasis.

Thanks for being in my life, checking up on me (as many do), and allowing me to practice my writing. I enjoy this, much as writing about delays kinda makes it harder to be upbeat and cheerful. As Robert Plant sang, "But I'll just keep a-rollin' along with the Grace from the Lord up above."

See you in the funny pages, Angels. 

Love and Blessings,

Ken

Ken

January 31, 2020 - Chapter 5, Part #1 Story of Ken

Dear Angels,

Thank you for being in my life and staying in touch. Thank you especially for the kind words, beautiful thoughts, prayers, and love and light that you send my way. I can often feel them and I'm genuinely grateful. 

The chemo is postponed again for the better part of two weeks while the insurance company works its way through the last parts of the paperwork that my Oncologist needs so that treatment can begin. After a discussion with the billing/insurance department at the hospital, it appears that two-fifths of the process is complete. I know this upsets some of you, and I can only ask that you join me in inviting Patience into your life in times like these. I've thought about using the phrases "dragging their heels" and "taking their sweet time", but now I feel that won't serve me, anyone else, or anything. It's just taking as long as it takes. That's the extent of it.

On a very positive note, I go next Thursday (Feb 6) for my follow-up with the Neurology Department at St. Thomas. They will see whether the lesion was the last of the cancer to venture into my brain. They were sure they got it all, but this will be the definitive check-up. I spoke about all this before, repeating the fractions they used to tell me how positive they felt about the radiosurgery. One upside is that once I get to further treatment, it will be known whether or not the brain is one of the hiding places for any remaining cancer. 

I'm personally focusing on getting the lung mass dealt with, even though the oncologist is not concerned about the delays. She's very serious-minded, honest, and more highly recommended by all the specialists I've seen than anyone else in this area. So, I trust her, her judgment, and her decisions. My concern is the discomfort the mass is causing. It's known as "referral pain" since lung tissue itself has no pain receptors. Unfortunately, nerve bundles in the chest get impinged upon. I'm actually repeating that information since some have started following these emails later than others. I add email addresses as folks tell me to add them.

Tylenol actually is the most effective pain-killer for my discomfort, even more than narcotics. The narcotics (that do work a little) can actually compress vessels that are impinged upon, according to my pulmonologist. I found this out first-hand with some strong oxycodone. With anything I take, it's still a six to eight-hour wait between doses. I have the 'okay' to use Tylenol (acetaminophen) every five. But, even though it's my best choice, it's not the best I could ask for. For example, I just took my every five-hour dose (1,000 mg) fifteen minutes ago and will see the pain-reducing for another forty-five minutes. Then I'll enjoy a reduction in pain for about three hours until the last hour of waiting, which will see an increase of the pain until I take my next dose. The pain at its worst is around a "seven" or more and dialed down I can sometimes see it get to less than "four". (using the scale that hospitals use when they ask your level of pain) I figured that since I've been honest so far, I might as well clarify my situation and why my sleep is always interrupted. Many people have been asking for details, so I'm going to start adding more as they come to mind.

I'll honestly share what I learn next Thursday with you, and continue to update as things happen. Again; thank you for being there. Do me a favor, if you will, and join me in making this world a slightly better place:  Be kind to others...and yourself.

Love genuinely,

Grateful Ken

January 23, 2020 - Chapter 4, Part #4 Story of Ken

Dear Angels,

As always, thank you for all the support, Love, and Kindness I receive both in emails and elsewhere. I am genuinely grateful.

Although this week has been eventful and interesting, it did not include the first round of chemo that had been scheduled. 

Yesterday, I had my 'orientation and education' with one of the oncology nurses for about an hour. I learned what a grocery list of chemicals and drugs will be used and all the possible positives, negatives, and side effects. I was given a printed version to study at home and for reference. I have to admit, there wasn't much I hadn't already been made aware of to some degree. My brother Steve was there as well, to be an extra set of ears and to help address questions that I might forget. I think we covered everything. 

The newest CT Scan was slightly different, in that I drank a 16 oz. bottle of a strawberry flavored 'contrast' solution, and then--after waiting an hour for absorption--had the normal scan with injected die. The one hour wait was the hardest part, actually.

Today, after the third night of intermittent sleep, I got to the doctors to prepare for the treatment. The so-far unused port was accessed and blood was drawn for testing. I was relieved that it worked fine (with only a small pin-prick of pain) after having been installed around six weeks ago. The normal 'flush' time for a port is six to eight weeks, and I am still on the learning curve. Anyway, they needed to take samples of blood (and urine) to check my viability for treatment. It appears I'm sturdy enough and have normal numbers, making me ready for treatment.

When the doctor came in, she told me the results of the CT Scan and gave me a copy to take home. The thing that stuck out, for me, was that it has grown a little in the past few months, but has NOT metastasized in any region covered by the scan. This means it has not gone into the other lung or elsewhere in the chest area. That was good news. Unfortunately, the insurance company has not okayed treatment yet, due to what appears to be a slow-down in the information-sharing involving the samples that have been sent out and such. I did receive letters today from the insurance company letting me know that the CT Scan for yesterday had been approved for payment, so I imagine it won't be long before everything gets caught up. The doctor saw fit to postpone the actual chemo treatment until next Thursday, the 30th. She assured me that this small delay was not of any concern, medically speaking. I still yield to her expertise and decisions. She is the one at the helm of this particular travel vessel, as I have indicated before. Again, I remind that I still trust that there are far greater hands that hold and guide this ship, anyway. So, for me, next week it is.

I'll keep everyone in the know as much as possible, and answer queries as best I can, but please join me in staying positive.

Love always,

Grateful Ken

January 18, 2020 - Chapter 4, Part #3 Story of Ken

Dear Angels,

I know I'm delinquent in my updates and have many ways to apologize and explain, but I'm going to pass on attempting to be cute or clever and just say that pain, fatigue, and a general lack of motivation are all on the team of culprits. So, please forgive my reticence. 

The biggest thing I learned Thursday at the oncologist's office was that I haven't been listening as closely as I could and that not much has changed in their plan of attack. Cancer that has migrated far from its home base (my right lung) all the way to the brain (and likely beyond) signifies to The Team that the chemo needs to be stronger and more multifaceted (targeted, is one word that has been used) than what would be used in conjunction with radiation. (or, in my case and choice Proton Therapy) Currently, radiation is "off the table" for now. Apparently, its action is toxic to part of the chemo concoction that has been planned to commence on Thursday of this coming week. Cancer cells will now be chased down to the very perimeter of my body. Even the brain, which will be re-evaluated via PET or CT Scan by the Neuro-Radiologists on Feb. 6, is going to be treated as if there may be something there. It appears my team wishes to take no chances with this. 

I can't articulate how grateful and very touched I am at the show of support, good vibes, and prayers I receive and hear about. I think they play a part in the overall scheme of things. To be clear, I'm still submitted to the Oncology team that has assembled to save my life, and yield to their expertise and decisions as my "higher power", as it were. What also has not changed, is that I believe there is a MUCH higher power in whose hands all of this truly is. Fear, and other such emotions, are almost automatically and effortlessly recognized as the intruders that they are and rejected on the spot. It's a gift, for which I can say I'm truly grateful.

Wednesday, I go in for 'training' with the nurses to prepare me for the chemotherapy, and then an up-to-date CT Scan to see how this all has progressed since the detour created by the brain tumor, that has now been dealt with. Thursday begins the treatments. They say 4-5 hours, so I'm bringing one of the four books that have been started in the past five months but have been gathering dust.

I genuinely love you all, or your name would not be on the list of angels that I send these updates to.

Sincerely,

Grateful Ken

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

December 20, 2019 - "Forgot to let you all know"

Hey Angels,

I've been answering individual queries since I got back from my first treatment, and plumb forgot that I wasn't including everyone as promised. Sorry about that.

The procedure itself was so void of sensation, that I actually thought they hadn't finished "prepping" me for it, when the radiologist came into the room and said, "Well, we're done." No noises, sensations (other than some lights from the equipment above my closed eyes), and no after-effects that I can put a finger on. I just had a vegan burrito, with a diet-coke and now have hiccups, though, which is so rare I can't even recall when I last them. Maybe years. So, unless there's some connection, I'd say I'm good as gold. I can live with a case of hiccups. 

So, I have two more sessions scheduled for Monday and Thursday at 8:30 am CST. (I'm on Chicago Time, by the way) After that, starts the chemo. I imagine there'll be more to report after that gets rolling. I'm told that personal 'reaction' is so varied that they can't predict who will go through what, in terms of their body's reaction. I'm naturally hoping for only the most endurable reaction and effectiveness, but that's out of my hands, which I accept without reservation. I'm sure I've been clear about that, I think.

My sense of humor remains unaffected, if not actually enhanced, but at the moment I think that'll be all I'm going to do before I take a nap. My sleep patterns continue to be interrupted by the pains I've mentioned recently. For instance, just laying on my back on the radiation machine's table was very uncomfortable. The mass lays on my lung, with the aid of Gravity, and requires medicine to make it possible for me to lie still. My oxygen is actually optimal (98%, almost every time) but my perception due to this lung mass is far less than that. Thank God for Tylenol, Albuterol, Robitussin, Dexamethasone, and Xanax. What a cocktail, eh? I've been given the absolute 'go-ahead' to use those ingredients as needed, too, which is nice. They keep me just under the anxiety and discomfort level I need to be beneath so I can hold still for the procedure. On the huge plus-side, the ultra-expensive equipment they have has a tracking device that instantly adjusts positioning of the beam in the event of any unexpected movement. That, in itself, was comforting although I was able to keep still for the 17 minutes or so of treatment today. They actually said that that would be the longest one. What a wondrous experience this is. I couldn't have dreamed it.

Thanks for being there for me, and as many are already finding out I answer each of every email or text within a pretty short time. Phone calls are still way too difficult to even think about, but hopefully, that will change after the lung mass starts to get dealt with as aggressively as I understand it's going to.

I did get a compliment on my "dating profile photos", with the bullseye tattoos and cute chemo port. I'll be seventy-three in less than three months, and it makes me feel pretty good to know I still got some marketability. My appetite has actually retuned in spades, too by the way, and I am now actually about a pound MORE than I lost during the struggle to find the right medicine for all this pain. I want to get buff so I can get back to jamming. I've been keeping up the music in my room, but it isn't the same as "the stage". Currently, I also have to 'whisper' the lyrics, as opposed to belt it out, which I enjoy.

Thanks for the fun and laughter; I chuckle internally, though, as you might imagine

Love y'all mucho. 

Ken

December 19, 2019 - "Ask and ye shall receive"

Dearest Angels,

I think I've forgotten to mention how much I love, cherish, and adore you all. I'm kinda off my game, so my bad; please forgive me.

In keeping with updating you, and leaving no stone unturned, I'll be a tad graphic here. As always, let me know if it's too much. I just enjoy the idea of you being with me on this 'journey'. I have a couple of photos to add in a bit, that I thought were kinda interesting. Nothing too revealing or disturbing, I don't think so anyway,

I woke up about 9 am this morning, after a good three hours of sleep (a major improvement over my normal one or so), but with pretty heavy pain in the chest and head, I mused to myself that I must have taken the wrong pain medicine and taken the one that triples the pain, as opposed to one that lessens it. Mental games like that give me the power to accept and "manage" my pain. Dexamethasone is what they prescribe, and it is designed to keep the inflammation and swelling down in this brain lesion, as well as helping my general discomfort issues as well. It helps quite a bit, now that I've saturated my system with it over time, but the occipital neuralgia (unrelated to cancer) is intense sometimes. During my biopsy, in mid-October, my head was tilted back (in the same way a sword swallower avoids slicing up his esophagus) to access the chest mass via a bronchoscopy The forty-five-minute procedure caused a nerve on the upper right part of the spinal cord to be compressed for that length of time, and according to my thorough study, and experience with a back disk injury about forty years ago, I have about 18 months before it will heal completely. I'd call it a major pain in the ass, but it's much higher than that. After a couple of hours of OTC meds, breathing medicine, etc., I am usually good for a while. I don't dare talk much physically, but typing/writing is a joy for me and therapeutic.

I got the call yesterday. Tomorrow, at 7:00 am beings my radiosurgery on the brain. My head will be locked tight in a mask to absolutely minimize healthy brain tissue being zapped. This is so state-of-the-art that my Proton Therapy Team is standing in the wings, with absolute trust in the procedure. I'll consult with the neurologist first, then the radiologist (I love these guys, as I've indicated already) then have about twenty minutes of prep and zap. By afternoon, if I'm up for it, I'll have some observations about what I've been through, that I'll be happy to share. Monday at nine will be treatment two, then the day after Christmas will be the final in this series. They will continue to watch for any changes and are prepared to do whatever it takes, although they are more than a little confident that nothing irreversible will occur. It's assumed that short term memory, a patch of hair or so, and taste and smell may be temporarily affected, but even that appears to be more possible than probable, according to their expert opinion. I'm cool with it. I even got the impression that as they check me periodically, they will be letting the body itself dispose of the dead tissue as opposed to surgically removing the remnant. I'll, of course, get that one clarified. After the brain tumor is dealt with, I being the full tilt chemo cocktail of three chemicals, every three weeks or so. Dr. Blakely, the medical oncologist, used a metaphor dear to my heart when she told me that one of the chemicals was 'targeted chemo' specifically used in attacking this particular cancer (adenocarcinoma a/k/a Non-small cell lung cancer) and was designed to strip the "Utterback Team Jersey" off of the cancer cells so that the gangs of white cells could recognize them as the invaders and impostors they are, and kick them out of the stadium. Go, team!

I'm not actually totally clear as to whether or not Proton Therapy is still even on the agenda, but will find out very soon; probably tomorrow at least to some degree. I'm including a pic of my chest all "bullsyed" up with marks they put on me for max precision. In the first photo, you can see the new portacath, but I'm including a more detailed pic, too. The portacath resembled (to me, at least) a little tom-tom drum with a ten or twelve-inch catheter. Since they don't actually put you "under", I felt him take his scalpel and slice my neck open for insertion, and then kinda forcefully push it in place. I now have first-hand experience with how Fentonyl became Michael Jackson's drug of choice. My sedation was a mix of that and an antibiotic and I not only didn't really feel any pain, but I also didn't really give a crap. I was kind of in la-la land when they fed the catheter down the vein and don't even recall it (not the jugular, but one nearby), but it hurt like hell for a couple of days afterward. Today, all is healed and relatively ready for use, I think.

No matter how sick I may get from this chemo, I'm greatly anticipating the end of this chest mass having full sway with me. Since I love metaphor and imagery, let me put it this way: I often feel like a claw (the size of a person's hand) is gripping my chest without quite breaking the skin, but still causing heavy pain. If it is followed by a coughing spasm, which happens often, the pain is increased in the chest and then added to by the neuralgic pain in my forehead. It's a huge challenge, is what I'm saying. So, if you have any morphine handy, you know what to get me for Christmas.

Here is that photo of the chest and side markings that the Proton Therapy Team marked me with:

And here's the closeup of my portacath:

See you in the funny pages!

Love and Blessings, 

Ken

December 16, 2019 - "Quick update, clarification, and admonishment"

Good Morning, Angels (very early, in fact)

I've been calling out of work since Tuesday's appointments (I have Wed and Thur off) and will do so today as well. The difficulty breathing with this mass in my chest is too much for me to expect to be able to walk around the store and do what I do there. So far, they "have my back" and all is well. They understand the situation and work with me accordingly. I'm cleared to go back if I want to until treatments begin, which will probably commence around this Thursday.

I've been hearing from some that they are concerned that their responses to my emails might be taxing on my energy resources, and I wanted to address that. I love writing; it's been a passion of mine for many years. It is not overwhelming or taxing at all, although my time is often being used lately for rest and rehabilitation, so the responses may not come immediately so that you know. On the other hand, talking physically is very taxing and often creates a coughing spasm with attendant pain and severe shortness of breath. That can not be addressed until after the radiosurgery on the brain. So I limit phone calls these days to next to none, except with the specialists' offices and related phone calls. Once the lung mass can be dealt with, I understand that this discomfort will change. I look forward to it.

I wanted to be sure I had the email BCC list correct, so if for any reason these emails are taxing to you, then please let me know and I'll take you off the list. No harm; no foul. I'm just going by my impaired memory right now (related to the prefrontal lobe, as it turns out), as to who wanted to be on the list, but I'm viable and cognizant enough to comply with a request of that nature. 

Finally, although nobody seems to have caught it yet, I juxtaposed the term 'millimeters' with 'centimeters'. The brain tumor is just under 30 millimeters, not centimeters. Just small enough (by a fraction of one millimeter) to allow for radiosurgery. It amounts to about 1 & 1/16th inches, NOT eleven plus inches. That would be huge. My bad. Anyhow, details like that bug me until I correct them. 

I'm going to try to rest more now but wanted to put that out there this morning. It's kinda my M.O. to be clear, or as my martial arts training always called it, "True and Correct". (I still do my highest form most every morning, but a low impact version more in a Tai Chi kind of way) I intend to go on living as normally as possible until further notice, including that part of my morning regimen.

As always, love and blessings, from me to you. Feel free to contact me, except by voice-phone or Facetime. If you have my phone number, texts are fine. If you are on Facebook, Instant Messenger is also fine.

As I recently said on Facebook, in a post using a recent Halloween photo of me (which I believe resembles my ancestors, which my father always told me about) "May the Great Spirit smile on you; today and every day".

Love Genuinely,

Ken (former warrior, Chief Running Mouth)

The warrior outfit is from a costume shop in the UK (via eBay) and the choker is beaded and handmade by the Cherokee Lodge (my heritage, I'm told) and includes a hand-carved buffalo bone arrowhead and two replica bear claws. (Illinois has laws about using and shipping actual claws) I enhanced the original color photo with a tint called "Silver Plate", which I thought resembled an old 1890s photograph.