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