The Green Light

Susan here to let you all know that the light turned green.
After a valiant fight to remain here with me, Kelley finally stepped through that door on his next adventure.  He passed in the wee hours of the morning 24 October 2019, with full knowledge that we will see each other again.  His pain is gone, and I feel he knows that I will be fine.

I know he appreciated all of you and had hopes that you gleaned a little knowledge from his posting.  He was adamant about taking responsibility for your own heath.  Be mindful of what you eat, drink, and put on your body.  Avoid stress at all costs, the damage can be irreparable.   

I intend to take his cremains to his beloved mountains and scatter him from the highest I can.  The winds will take him everywhere from that vantage point.  But, truly, his Spirit is already everywhere.

This is probably be the last post and I wish you all good health and long life.

Sincerely,
Susan 

 

Susan here to update you on Kelley

Susan here to update you on Kelley.  The past week has been most difficult and he barely logs onto the computer, let alone post.  The morphine keeps him satisfactorily pain free, but also causes him to sleep most the day.  I know his main concern is getting me situated the best he can.  It's keeping him here, I know.  We have Hospice coming once a week now to check in on him and they have been very helpful to us both.  Kelley is still ambulatory, using his walker to get around.  It sat in the closet for nearly 18 months and we nearly gave it away...

We both of us certainly missed our trip out West, but the snows are now there. Our window of time closed.  Kelley is in no condition to drive, let alone comfortably sit in the passenger seat.  But, our computer desktops are a slideshow of all the wonderful places we have been, through all the seasons of our life together.  Forty years is a long time to live with a person.  I cannot remember a time when there was not Kelley in my life.  He is amazingly strong willed and it got him through many trying times.  Unfortunately, this was not one of them.   We had dreams fulfilled, but there were more.....

Ok!  I showed you my hospice care area, and I'll pretty much stay here till those final moments.  I don't have a lot of energy left to do much else.  A little TV, and computer play, and mostly sleep.
I don't fear death, at this point, as spiritually I'm in the right place.  Scientifically I'm curious.  What will that exact moment be like?
Frankly, I welcome all this in a way.  The world, has gone crazy, and I really don't want to be part of it anymore.
For me, the moment will be special, as I can bond with Susan, becoming part of her very soul.
Let's see if I can get a few more days.

The Solution

The Great Escape 2

Paid cash for it and it's a great place to go when the condo slips away.

The only issue now is that the Condo Association won't let us keep it here.  At the moment, our homeless shelter, is homeless.  That's the next issue to solve while I'm still on the planet.

People are Amazing!

As I have said, many times throughout this ordeal, It's a roller coaster ride.
Radiation has gone great, and the Y90 mapping and first injection went perfectly.  I'm amazed at all this considering my physical state.  I'm 105 lbs and not eating well.  For awhile I'll just remain in my lazy boy, and let the meds do their thing.

Here's where things get better.  People suck, I mean, really suck.  We live in a condo complex and some own their condos, and we rent.  A month ago, without permission, Chris had been here 17 years.  Last week again, they showed the 3 remaining units.  Last night, our friends across the hall who have been her 13 years, were given 30 days to vacate.  We are next.
Great!  
This is the way I see it, in 30 days, we will be homeless.  The condo board just says, "Business, Is Business!"
There are no support programs available in Wisconsin, and The Va, doesn't seem to care either.
How the hell are we going to move with me in a walker, somebody tell me that.
I'm usually a fairly calm guy, but let me put you in my head for a minute.
This property management company, is filled with the most greedy, and uncompassionate people I have ever known.  They have left us with few options.

Yes! We will still have The Mustang and may just sell everything, and hit the road.

I could buy a house, which would be easier than renting, but why strap Susan, with a mortgage?

What we are actually going to do is buy a small Motor Home, and just drift off into the sunset.

No matter how hard you fight, and no matter how hard you try, somebodies always going to get in you way.

We'll let you know

When you actually start looking at reality, I know what is going on!  I very much, know!

I made this little road sign, just to put it all in perspective.

I'm noticing changes, that are telling me this thing has got me.  Pain under my rib cage, on the right side.  Getting harder to gain weight, and keep it on.  Fatigue.

I'm just saying, realistically.  I really don't have much choice as to which road, I will go down.  I just know!

Amazing how things change on this Cancer, roller coaster ride.  Got the final round of radiation today.  

We went in for my Y-90 consultation yesterday and it's a go, and they have great confidence that it will stretch things a bit. 

What is Y90?

Radioembolization requires at least two treatment sessions. The first session is a mapping angiogram, where a catheter is passed into the liver artery from the groin and angiography is used to “map out” all the arteries in the liver circulation. At this time, any arteries passing from the liver circulation to non-target structures, such as the stomach or bowel, can be embolized (blocked off) with coils, to prevent radiation damage to these organs. A test will also be done to confirm that there is not shunting of blood flow through the liver into the lungs. The second session is the delivery of the radiation into the liver cancer. The radiation is in the form of a radioactive isotope called Yttrium-90 or Y-90, which is fixed onto tiny glass or resin particles. Once a microcatheter is placed into the artery supplying the cancer, angiography is performed to confirm appropriate position, and the radioactive microspheres are injected into the artery. The blood flow in the artery carries the particles into the cancer, where they lodge and release the radiation directly into the tumor. The radiation causes death of the cancer cells over the next 1-3 months.

The mapping process will take place very soon, and after that, we are taking a trip out west to do some photography, then I'll get the actual treatment.

This will be my last resort, but, why not try.

Been Posting a bit these days, but todays, is not the best news, for me at least.

Got my third shot of radiation today, with two more to go.

Then, The Doctor has a special session with me.

I knew it was coming, and it is.  They have determined that there is nothing more than they can do.  5 Mets to The Liver, and several that are expanding rapidly on my abdomen wall, which is starting to build up a fluid of some sort.

I guess that's it, as they gave me two months!

One might think, then, that would be IT!

Well, Kids, It's It When I Say It!

We're going on vacation next week and going to do a little traveling, photography, and home movie making.

I suppose your thinking this is a terrible outcome.

I knew from the beginning, this wasn't going to be cured.

That's Why I Wrote This

When I Get The 

Green Light

With all that said, I do it with a smile.

Ahhh, Yes!

Made it to labor day, and of course, have been laboring around the house.  Put a new screen on the bedroom window, and I will say, who ever invented the DIY, screen kit, was a pathetic engineer.  Nothing fit, and the plastic corners broke instantly.  With a little McGyvering, got it done.

Took the first two rounds of radiation last week, at The UW Carbone center.  That place is incredible and they know what they are doing.  I have three more to go starting tomorrow.  The treatment was so easy, but I did find myself very tired, which I think is common.

I've gotten used to the morphine twice a day, which I'm aware, that may come back and bite me one day, but hopefully after the radiation, I will be able to stop taking it.

Yeap, it's cancer, and all in all, there are worse things in life.  Fighting in a war, maybe being in prison, yeah there are worse things.  I look at it this way, it's just another adventure, and I think, if a person doesn't have an ongoing adventure, then what's the point.

Happy Labor Day, everybody, or what ever you might be celebrating today.  If you have nothing to celebrate, try life.  You might find that celebration, very refreshing.

Of course, we might, just be doing a little faster than some.

Till Next Time

Your Friend; 

Kelley McGuiness

I must admit, my attitude has changed drastically.

After a year and a half of doctors telling me what is going to happen, and in some cases, when it's going to happen, I'm listening anymore.  40 MG of morphine/day might help that a bit.  I do have a rather obtuse personality.

One day my weight got, at least to me, critically low.  I have realized that I am eating to healthy.  So, I go out, have a great big burger, fries, you know, stuff that will hurt you, or so they say.  It worked, and now I do this occasionally.  The weight is coming back.

The medication?  Listen to the doctors, but regulate yourself to what works, and is comfortable.

Chemo?  Well that didn't work, it apparently did nothing, except make somebody a lot of money.

With this all said, I am recommending a, low dose of radiation to minimize this tumor that is right there.  The doctors seem to agree.

Although, I'm retired now, I still work around the house, vigorously, and yes, sometimes to the point of straining a bit, and I still feel good.

I just, and quite suddenly, realized, I'm my own doctor.

Why?   Because it's seems to be working, and if it works, then, why not?

I'm not listening anymore, I'm doing!

I finally have a Doctor that is listening to my concerns.  The lump on my stomach, turns out to be a tumor that is expanding to the point where it can be seen.  Let me tell you, it hurts too.  My primary care Doctor is taking this very seriously and is putting me on Palliative care and the Oncologist have given me a prescription of Morphine Sulfate  (15 mg) for the pain.  At this point we are discussing radiation to try and knock out this particular tumor.  I'll keep you all posted as to what is next.



I can't believe Summer has gone by this fast, then of course working didn't help that.  I solved that issue, several weeks ago by retiring.  I didn't need the stress of all of that, and am feeling almost human again.

I haven't been talking about the cancer problem much recently either.  At this point, there doesn't seem much use in caring anymore.  I will tell you some of the things that have been happening.

 

Back in June, my Oncologist told me that the Folfox treatment wasn't working, and the tumors on the Liver were expanding.  Funny, you think that they might have realized that after a year, then again, I wonder if they had time to bother.  The thing is, I'm being treated by residents that move on as fast as Donald Trumps Cabinet Members.

 

With that said, my last Oncologist, in May, put me on a new drug called, Irinotecan.  By the way, while I was on this drug, my cancer marker, or CEA, went from 45 to 100 in 4 weeks.  Now this drug is evil.  I was getting severe stomach cramping, headaches, etc...  After 8 weeks of this I voiced my concern to The Doctor, he said what I was going thru was normal.

 

Then one day in his office, he told me they were stopping the chemo all together.  He looked at me with a frown, and said, there is nothing we can do for you anymore.  We had told him we were taking an extended vacation in September, and he smiled.  "I wouldn't wait if I were you!"  Oh, that's just great to hear.  Then he started going into details about what my last days would be like.

 

He had no encouragement at all, and quickly left the room, I would imagine, to ruin someone else's day.  He did prescribe a drug called, Lonsurf.  This drug has been on the market a few months, and the clinical trials, showed that it was no better than a placebo.   It must be good for something as it costs $13,000/month.

 

Who the hell are these Doctors and Pharmacists that come up with this crap.  All along, I had been complaining about a lump under my incision.  It's a very painful little beast.  One doctor says it's a tumor, and the others say not to worry about it.  I haven't seen any of my CT Scans through this whole thing.  I'm beginning to wonder if there is anything wrong at all, other than what they are telling me.

 

Alex Trebek recently shared his devastating cancer diagnosis with fans. In March 2019, the 78-year-old revealed that he has stage 4 pancreatic cancer.  Your basically doomed if you get that diagnosis, but strangely he announced remission a month later.

 

These are all things I have been thinking about for the past months.

 

 

 

May 24., 2019

You fight your Cancer with everything you have, but Cancer is only part of the battle.

It seems that way in the beginning, on that first day, The VA, choose my path.  Just after they discovered that my colon had ruptured, I was sent by ambulance to UW Health, in Madison, Wisconsin.  As it turned out, The VA had no hospital beds available, so I was put up overnight at UW Health, then the next morning, was moved to The VA, ninth floor surgery area.

Several months later I received a call from UW Health advising me to pay my bill for the overnight stay.  As it appears, Th VA didn't pay the bill, because UW Health charged them twice.  Now, I'm getting threatening calls from UW Health about none payment.  The VA said everything was taken care of.

It's beginning to become apparent to me, that Bureaucracy has thrown me under the bus, as due to both's incompetence, my credit rating is about to take a hit.  Boy, talk about kicking a guy when he's down.

There are so many other things that fall on you during treatment.  My job is sympathetic, but when it comes down to not feeling good occasionally, due to Chemo, they become like a pack of wet cats, annoyed that they have a little extra work to do.  It's not extra work, it's the things they should have been doing anyways.

It appears, the longer you live, the more of a burden you become.

In all actuality, it's about their problem with dealing with it. I guess they would have been more comfortable if I had just passed in the two months I was given by The Doctors.

The hospitals are batting me around like a volleyball, and others around me are wondering why I have made it so long.

Sadly, the stress of all this is getting to me, and am considering, stopping my treatments and letting nature take it's course.

Why am I saying all this?  It's simple!  I'm growing weary of the fight to survive.

Just recent thoughts about all this.

April 16, 2019  (12 months past my expiration date)

The Saga, continues.  It is a saga of sorts.  We call this winter The WWW.  Wicked Weather Wednesday.  Every Chemo session presented impassible roads, so I missed 4 sessions.

My little cancer buddies took advantage of that, and grew their little civilization, beyond what we had compromised on.  I warned them, now I'm going to kill them.

I go on to round two, Folfiri, to battle this.  It's a different drug cocktail, with different side effects.

Let's be honest here.  I'm not going to win.  That day will come, sooner or later, as it is designed, But I want to tell you something.  I have two families.  My Wife, who has been by my side through this whole ordeal, while battling her own cancer issues.

Our motto is:

 Your either, By My Side

On My Side

Or, Just in The Way

I am fortunate to have a second family.  My Employer.  They have been my family too.  By my side always, and On My Side, always.

Without these people, I wouldn't have made it this long.

As I approach that finish line, they have given me a blessing, I hope other also receive.

Love, Compassion, and Understanding.

As I travel on to the next part of this grand adventure, I'll, live and learn, with the knowledge, that I never gave up.

Then, again, I'm still here.  If your looking to jump in my place in line, hold off.  I might surprise  you.

 

 

Finally back on Chemo after a three session delay due to weather. I have one more Folfox session after this one,and a CT scan next week. At that point my medical team is going to decide the next course. They mentioned pills, or just an observation stage.I think they are puzzled after 16 sessions that I'm still working and taking on some very intense tasks, without getting too tired. I'm very conviced, I'm not in remission, as stage 4 colon cancer doesn't typically, just go away. What a ride this has been. All I can hope is working as hard as I have, is scaring my little cancer buddies into the unemploment line. One never knows, as we are all different. That's todays episode, so stay turned, as my show hasn't been cancelled yet. Love to all of you.

Kelley

 Feb,25, 2019

Time Marches on, and to the surprise to a lot of people, so do I.

Lovely, Wisconsin , weather.  I've missed three chemo sessions due to it.  The Nurses and The Doctors are just trying to help me, so they say.  Then why have the roads been impassable.

My little cancer buddies understand.  Still working full time, and getting a lot of exercise.

My cancer buddies know.  If I die, then so do they.  I'm just getting along with them.

I realize, they are symbiotes, am I'm a host.  I think, we get along.

I feel great!

Ahhhh, where am I these days?

I feed those live, cancer cells, good bourbon, and the lung nodules, some good home grown smoke.

The only ones that are pissed might be the pharmaceuticals who aren't making money off me.

Then let them starve, like I care.

How do I do this?  I just don't give a shit.

I like my little cancer buddies.  They make me realize who I am, and they know, they have to wear a toolbelt in my body.

Damn, this is a fun adventure.

To those chemical companies, that are so aware !

Your gonna have to do a lot more to get me.

Gimme your best shot!

Live long, and prosper, for another year!

 

 

 

 

Cancer is a lot like us. It forms communties, grows and spreads, as we do. It forms a symbiotic relationship with us. It resents another species that competes with it. It very similar to all of us, except it stays together and works as a team. We, on the other hand, fight amongst ourselves waging war against other communities. Imagine, if we had the power to act as they do. We would all stick together, expand, fight our enemies, and simply survive. Those little cancer cells, might know something, we don't. It's called, self preservation.