OH Food, I knew you well……..

This post covers several weeks.
Thursday, November 15, 2018
Oh, Food I knew you well……….
Wrapping up week 3 of treatments and it is not getting any easier. The only thing that has gotten better is the cage/mask I have to wear, I’ve gotten over the claustrophobia. Well, it’s something.
Last time I mentioned that taste was changing, taste is gone, and the throat is so sore that talking is a chore. Laura has gotten used to a bizarre form of sign language I’ve created. I can still talk, just I’m economizing how much I do.
When your mouth hurts so bad that each time you swallow it feels like a pine cone making its way down your throat it’s easy to forget about food and water. My mind has shut off hunger pangs and now I have to force myself to take nourishment and hydrate. The doctors say this is normal and is why I have a feeding tube……. Therein lurks another problem.
I tried the meal replacement ENSURE and that lasted about a minute. Bam it was in the sink. I don’t know what it is about that stuff that makes me sick, but it sure does. Tomorrow I’ll start the prescription food. I hope it settles better than the other stuff or I will have real problems.
Has anyone ever noticed just how many pizza commercials are on TV? Olive Garden? Food commercials in general? When you can’t have it, it sure looks good. I had a dream about a glazed do-nut, yeah Krispy Kream…. still hot…right out of the oil.
If you lose your sense of taste you should also lose your sense of smell. That is a cruel irony of all this. I miss real food.

Moving on.
Since the above entry was written, I’ve had some antibiotics and the throat pain has abated to a certain degree. I had a thrush infection. Now the pain is manageable with Tylenol and swallowing isn’t as painful as it was.
Last Monday I was supposed to have my 2nd chemo infusion. It didn’t happen because a portion of my blood work was too high. The doctor, not my usual one, he was on vacation, said I was dehydrated, and my kidneys couldn’t stand the chemo. So, hook me up to the saline and retest. An hour to drain a bag of water, 2.5 hours waiting for blood results and I had already been there 3.5 hours.
The test came back higher than the first. We had to cancel the chemo and I have to concentrate on forcing water to drive the value down, so I can try again this Monday. 7 hours sitting in the infusion first of all clinic and a whole day wasted.

Thanksgiving, a food centric holiday…
First of all, I hope everyone had a great Thanksgiving surrounded by those who mean the most to you! I hope you ate until you passed out on the couch in front of the TV. Most of all, I hope your thankful for all you have.
With that said, Holy Moly guys you have no idea. Everyone is talking about food. Turkey, ham, stuffing and veggies…… Never wanted to sit down and eat more than anything in my life. Alone in a group or on the moon, I want to eat roasted turkey and cold turkey sandwiches with Miracle Wwwhip on white bread.
We made the decision to forego the trips to the infusion clinic for hydration in favor of going home to Burney. I can hydrate through my G-tube and keep up with at least 64 oz’s a day. Besides, 5 days in a hotel room can get to you and we needed a change of venue.
Clearance from the clinic and off we go. Friday was a nice drive on the hiway. Fast and uncongested. Home for a goodnights rest on our own bed. Wake up Saturday, cup of tea I couldn’t finish. Hmm, I always finish my tea at home.
Using my g-tube and adding water to hydrates all seems to be going well until it isn’t…. I suddenly announce, “We’ll this should be interesting…LAURA, I need your help now.” I dash to the bathroom with my feeding “rig” and syringes in tow. Laura shows up and says what’s going on? I explain I have to get everything disconnected before I hurl. If it is still connected the feeding tube stuff will go out top and bottom. We finally get the tube sealed and I spend the next 36 hours vomiting until it is nothing more than bile and acid. It burned my already burnt throat to the point I could not talk and stung unmercifully.
This brings us up to date and I will pick up with the Mondays visit to the Infusion Clinic.
Until then,
The bottom Line,
Tumor change= unknown
Pain = 8-9 on scale of 10
Weight loss = > 35lbs

WELL, THAT SUCKED……….

11/7/2018

WELL, THAT SUCKED………….

The first week of treatment went pretty well. I noticed the changes taking place. Taste etc.  Chemo was a relative “non-event” or, so I thought.

By Friday, Laura and I are ready to head home for the weekend, so we pack up the dog and head north. Laura says she doesn’t feel good which is normal for a road trip.  A few hours later and were home.  It should be worth mentioning at this point that my attitude over the week soured a bit. And I am pretty cranky.

We dump everything in the living room and go to bed.  I sleep through the night for the first time in a week and get up early with Oreo.  We watch tv and both of us fall asleep again.  I wake up and it’s 11 am and Laura is still not up so I go to get her and as soon as I open the bedroom door……. there is a groan.  Seems she has been up-all-night with the flu and its associated gifts.  By night time, I have a full-blown case.

Sunday morning and Laura’s’ feeling better and my case is just hitting its stride.  Nothing is staying in me. Can’t drink water or eat.  Even the mention of throwing up triggers a wretch-fest in me that lasts 10 minutes…. way past dry heaves.

I’m due in the radiation lab Monday morning and the thought of sitting in a car for hours makes me even sicker and my mind cannot comprehend the idea of being locked to the table with a bite-block filling my mouth and then deciding that I have to puke.  I figure that the last thing they want in the building is a sicky along with all those others who are compromised, I make the decision to call and cancel my appointment. I get no argument from the boss, so I call the hospital and the pressure is off. By Monday night I haven’t thrown up for a day and can drink water. We head south and make my Tuesday appointment.  I’m still sick and badly dehydrated, and weak.  I think the nurse should give the once over, she agrees.  Blood pressure-bad, heart rate-all over the map.   Good to go.

I saw my oncologist after the treatment and she thinks the severity of the flu was caused by chemo a week earlier…….ugh.

By Wednesday, I’m back to 80% and a half decent human.  My blessed wife……. why she doesn’t kill me in my sleep is beyond me.

From this day forward, I will be a nice man and actively filter what comes out of my mouth.  I promise sweetheart.  No, really, trust me.

By the way, we both had our flu shots.  Get yours NOW.

1.5 weeks into treatment

No change in tumor size

Lost 18 pounds with the flu.

Smooth sailing from here. (PLEASE)

One round of Chemo and five days of Radiation……….

Late Post

The first day of chemo is behind me and it sucks as bad everyone says. Four hours of a comfy chair with tv and snacks are all great, but it’s the four tries at getting a vein (apparently, I’m no longer an easy stick) left me bruised and sore. The Docs had me preloaded with anti-nausea meds for the chemo along with several other IV meds and saline which really helped. The sensations of these deadly chemicals going into your body is kind of indescribable.  Burning, tingling, cold hot, even tickling. Fear runs with them.  I was wondering if there would be an allergic reaction and what form would it take.   Glad the first is over and we can punch on through the rest like the Hi-C guy.

The radiation was as bad as I had predicted. The giant machine with the rotating arms and x-ray/gamma emitters swinging by your body.  “fade in opening scene” of the TV show Incredible Hulk.  (See YouTube) In yesterday’s session, right in the middle of the treatment the machine stops and begins to beep rather anxiously.   Am I getting my first dose of superpowers?  Are paperclips beginning to vibrate in their boxes? Voice comes over the intercom says, “uh, we’re working on its Mr. Farley”.  About a minute later the linear accelerator begins to rumble and assumedly return to producing 1.21 jig a-watts of cancer-killing goodness.   Turns out if the arm of the machine gets too close it shuts down………coulda’ just said that guys, just sayin’ All this going on as my head and shoulders pinned to the table in a plastic cage.

The radiation treatments are routine, leave me feeling warm, sun burny and my voice very hoarse.  These usually begin to subside after a few hours.  Importantly, keeping the exterior skin moist is important so you don’t end up with a two-tone neck and throat. I have noticed that eating and drinking has changed a bit. So, I suspect there is some swelling and food does taste very different.

Note: this post was not posted due to illness, shortly after writing this I came down with the flu.  New entries follow.

The Countdown Continues…….

10/17/2018

The last tests have been done, targeting and restraint are complete. I have added some pictures of the CT targeting and the behemoth that will irradiate me and hopefully, give me superpowers. With my luck it’ll turn out to be something like PAPERCLIP MAN, only using his powers for good, he can sort and untangle multiple boxes of paperclips in the matter seconds.  Yeah, sounds about right.

The last major step was to have a gastric feeding tube inserted through my abdomen wall, so I can feed myself and hydrate once the radiation causes my throat to swell to the point that taking food orally will be unpleasant, oh, and not to mention the taste.  I’m told after the first round of chemo and a few doses of radiation your taste buds go south and everything taste like metal/copper.

The tube so far hasn’t been too much of a problem. Getting it put in was.  Well, getting the procedure done was straightforward, get an IV, get a few drugs via said IV, relax, fall asleep and wake up with a hole in your stomach. The downside is I had to remain in the hospital overnight for observation. There are a few truths about a hospital stay and the first truth is you will get no rest or sleep. It’s like they watch you and just when you appear to doze off…. BAM the door opens and the room floods with light and a meek healthcare worker says “oh, sorry, I can come back later”. I guess they take observation very seriously.

Getting out of the hospital is the real test of your goodwill to all. Everyone agrees you are ready to be discharged, wound looks great, vitals are good and last round of blood work is fine.  All that is missing is the Doctor, the hospital-based doctor who has never heard of you until they got to the floor.  In my case, she came in and I had to explain why I was there and the procedure I had.   I also explain that I have a class scheduled for Tuesday to show me how to use and take care of the feeding tube. Well, she says that before I am discharged I must watch videos and have a nurse demonstrate the thing by pushing 210 cc’s of Ensure into my stomach and wait two hours to see if I get nauseous.  WHAT???  Are You Kidding me?  The nurses are all rolling their eyes and shaking their heads.  A plan is hatched.  My nurse says, let me see what I can do.  He comes back and announces they don’t have Ensure and gives Laura and I a wink.  The doctor comes back and asks how everything went. All good we reply in unison. I’m gone in 15 minutes and the whole ordeal took 3.5 hours.

Fast forward to Tuesday and my last appointments.  First, a baseline hearing test, no problems there. Just a confirmation that I’m deaf as a post. Seems the cisplatin (chemo) can cause hearing loss.  Next, my CT simulation re-do and confirm the lineup, fit of the cage and the final Okie Dokie from the Oncologist.  Here are a few pictures of the “cage”.  It is made of plastic that is heated then stretched over my head and shoulders and left to cool. Trust me, it sucked, and I will have to wear it every time I have a radiation treatment.  If you look closely, you can see a plastic stick coming out of my mouth. This a mouth block meant to fill space inside my mouth and keep my jaw muscles flexible.

In the picture, you’ll notice a blue plate with black & grey dots on it.  This is the means by which they keep me from running away and scaring the villagers.  It has 10 or 12 “bolts” that fasten to the table. It allows for NO motion in the mask.  I still haven’t quite come to terms with this yet…sedation, please!

Why Would I share Such a personal thing……

Why Would I share Such a personal thing……

10-07-2018
I was asked the question recently, “why in the hell would you share such personal information on the web? “ I guess that’s a fair question.
In many ways, I am a very private person and in other areas, I’m not. I have always admired a person that can talk about something awful and troubling in their life with a friend. It has taken me many long years and a lot of introspection to be able to talk about things I may be uncomfortable with. I found out many years ago that talking about things can take the sting and venom out of a bad experience. In my life, I’ve had the misfortune to have experienced some awful things, things that keep you up at night and affect the way you deal with others and life. Talking about these things have allowed me to let go of some of the ghosts that come from holding in bad things. Yes, I’m talking about “therapy”. However, therapy takes many forms. There are the Doctors and the couch and “how do feel about that”, but what does me the most good is talking to a trusted friend and sifting through the ashes of bad decisions and the bumps in life’s road. I’m lucky to have a few very good friends and a lot of good friends who are for the most part just as out of kilter as I am, so we get one another.
That is sort of what this blog is. What it is not is, a baring of my soul, a pity party, a chance to pass my baggage off to you or a “how to” story. This is me working through a very scary part of my life and writing this down helps me keep the fact I have cancer and the only way to beat it is to fight it and keep it in the front of my mind until every shred of this insidious killer disease has left my body.
Yes, this a very personal journey, one you may not want to follow. That’s fine. I get it. If you want to come along, I’m grateful. All I ask for is honest feedback and your support.
I have been reading several blogs lately written by folks that are battling various forms of cancer or have beaten it and a few who have lost the race and are making the most of their time left. All these blogs have different purposes. Some are Snake Oil salesmen with all the remedies and answers. Some are touting new age techniques of crystals and herbs. Most are like mine, describing a journey and are trying to see around that next corner. They all have their purpose to the authors and I wish them all the best of luck and I hope they get what they are looking to get from the experience.
I don’t know what where this blog will go. I do know that I’m going to follow it to the end. Documenting the course I will follow and fighting it tooth and nail.
As I mentioned in my initial emails, if you’re here that means I consider you a member of my family or extended family. Some of you have known me all my life, some only a few years. Some linked to me by blood, some by shared philosophies and some are linked by hydraulic fluid, jet fuel, and salt water. No matter the link or connection you are a part of my life.
I suspect I over-answered the question as usual.

Here is the bottom line as of 10-07-2018

Squamous Cell Carcinoma of the Throat

The tumor is 5 CM and Stage II

Treatment starts 10-29-2018 (my choice)(no change)

Thanks for reading and I hope to see you here again.
Keith

My Current Journey Started with A Cancer Diagnosis…….

 10-04-2018

I have known many people that have had cancer, some died from it and others survived it.  Cancer has never hit too close to home until now.  I have cancer.  Just the words generate a feeling that is impossible for me to describe.  Fear, panic, worry, anger, resentment, and variations of all wrapped up in a chaotic ball is as close as I can come to what I feel since my diagnosis.

I’ll start at the beginning.  Sometime in late August 2018 I was using a 6-foot USB micro Endo-scope for some electronics work I was doing with my radios and after I was done, boys being boys, I decided to check out my ear canals.  All clear there. Next, let’s see about my dental work, Very nice.  How are my tonsils doing?  Hmm, that doesn’t look right.  I see a pickle-shaped thing with what looks like blisters all over it.  A chill ran through me, not thinking cancer but knowing that that is not right and looks like a problem.  The endoscope has a camera function, so I click a few pictures and email them to my doctor and ask what she thinks of this development.  I got an almost immediate response.  A call from her nurse to get my butt into her office the following week.  This was the Friday of Labor weekend, so I have to wait 4 days + 1 to see the good doctor.  Time to fret and worry.  Sure put a damper on the holiday.  My wife and I had several discussions over the next few days, talking about several possibilities including cancer.

The following week I drive down to see the doc.  She looks down my throat and gives me that well practiced “Umhmm”. She tells me to wait here and she disappears and returns 5 minutes later and tells me to trot over to Ear, Nose & Throat let them look at this thing.  The ENT doc has me sit in a fancy chair with cameras and all sorts of probe type instruments.  She takes one look down my throat and says, “that definitely look like cancer”.  I asked if she planned to biopsy it to be sure, a few squirts of throat numbing, and the samples were off to the lab.

Fast forward a few days, the phone call with the now not surprising news, its’ cancer, Squamous Cell Carcinoma of the throat.  Doc thinks it is Stage III but can’t tell for sure until an MRI or CT scan is done.

My normally sedate life suddenly becomes an endless string of doctor and lab appointments.

CT, MRI and a Pet scan and I meet my team. My cancer team consists of seven doctors and 3 other disciplines, Dietitian, Speech & Swallowing therapist and a gastric nurse.  This took the best part of 6 hours with one after another coming and going.

Originally, I was told they would remove the tumor and radiate the area. No Chemo!! Woo Hoo! That was short-lived, the surgeon tells me that due to its size he would rather let radiation and Chemo have the first whack at it.  Boohoo.

Most all preparations are in place to start treatment all that is left is the “targeting and tattoo” portion so they can hit the same place over and over to reduce the collateral damage.  Oh, and the mask that bolts my head to the table……….

My wife is a saint.  She has taken the role of Angel in waiting. She has kept me up and encourages me to stay positive and in the moment.  She pushed me back to my meditation and prayers. They say the support and mind-body are the largest part to successful treatment.  I knew this but have evolved away from it.  It feels good to return to it.

Next step is to have a gastric feeding tube inserted. The reason is to ensure that during radiation as my throat swells from the treatment I can still get hydration and nutrition via the feeding tube that is mounted on my stomach.  Think meal supplements like Ensure and other high-calorie liquid meal replacements.

Interesting note: the tumor is a P-16 HPV positive tumor. More here.  http://www.cdc.gov/std/hpv/stdfact-hpv.htm

The treatment is what they call a 35/3.  35 doses of radiation and 3 rounds of Chemo.  The first chemo starts the same day as radiation.

I will try to update this blog every week to keep any interested parties up to date.

Here is the bottom line as of 10-04-2018

Squamous Cell Carcinoma of the Throat

The tumor is 5 CM and Stage II

Treatment starts 10-29-2018 (my choice)