Monday, February 12, 2018

Another Clinical Trial

So I started another clinical trial last Wednesday. This one includes infusion therapy on day one of the cycle with pills twice a day for 14 days. I get the last week of 21 day cycle to rest. 

The infusion on day 1 is two different drugs, one of which may be a placebo. You don't get to know since it is a blind study. I have already had the pills and one of the infusion drugs in previous treatments. So I kinda know what to expect.

In addition to starting the new clinical trial last Wednesday I had another thoracentesis. Because of the pocketing of the fluid in my lung they were only able to draw 250  ML of fluid, so the shortness of breath continues. My pulse rate is still elevated between 97 and 107. This one concerns me.

That's it for now.

Here's this week's contribution to my "New Normal".

Biker’s Valentine Card

Get this straight you lovely bitch
I’m not with you cause you’re rich
I like your smile, your skin, your touch
You’ve got edge, but not too much

You make me hot, don’t leave me cold
You’re funny; you’re smart and even bold
So if it’s not out of the question or just uncool

Would you be the Valentine of this fool?

Saturday, January 20, 2018

Wednesday's Appointments

So.... I met with my oncologist and my pulmonary doctor on Wednesday. My first appointment was with the oncologist. He suggested 3 options including stopping treatment altogether. I chose another clinical trial. I just wanted to get my lung issued taken care of first. We left if like that till I met with pulmonary doctor at my next appointment.

The pulmonary doc was great, but I got a not so good surprise. After x-rays and some other tests it was determined that my Pleurex catheter was clogged and I still had fluid in my lungs causing shortness of breath. They managed to get me scheduled the same day for removing the catheter (which I really wanted out). I had been draining every 4 days and getting nothing, so it had to go.

The procedure to remove the catheter is done without anesthetic, just topical numbing like at the dentist office. It is a little freaky because they literally yank the thing out of you, no kidding. It doesn't really hurt, but when that thing comes flying out of you it's a little troubling.

All went well and we were home by 4 PM. We started at 9 AM so it was a long tiring day at the hospital. I am always impressed with the way Mayo operates. The doctor went out of his way and rescheduled his day to accommodate me and get it done in one trip. I am very appreciative of that and told him so.

I did tease him a little bit though, referring to myself as his patient zero since he had been dealing with me since 9:40 in the morning and we were just getting out of the operating room at 3. That's a long time for a doctor to spend with one patient.

The bad news in all this is that I still have fluid compressing my lung. We'll see what happens next. In the meantime I should start on the clinical trial in the next week or two.

That's it for now.

Here's this weeks contribution to my "New Normal".


Explanations

Explain to me again why you’re leaving 
she asked with a curious sigh
I can be happy with only you
If that’s what it takes to get by

No, my own desires and faithlessness
match your whims for sexual play
I can’t keep up with the roster
of who’s on who today

It’s nice that they find you attractive
and experienced and oh so sly
If ever your talent for business wanes
as a courtesan you’d get by

And I the trailer park gigolo
hoping from bed to bed
a sad little cheating jerk of a man
lucky now not to be dead

We sated our passion time and again
experimented with oils and scents
came together like snakes and wolves
then slunk out the back through the fence

I wanted romance and mad passion too
yet it turned out so cheap in the end
without some trust and kindness there
it’s not in the cards to be friends

We’re left just with scars and bruises
both on our bodies and minds
nothing explains how we got this way
I didn’t pick up on the signs

So yea, I guess I’m leaving
Better gone than standing here
with the shame of disappointment

betrayal, lies and fear

Friday, January 12, 2018

The New Year is getting interesting

I haven't posted in a couple of weeks due to laziness. During this period I had an appointment with the VA to review my compensation for Agent Orange. What will come of that I don't know.

My participation in a research study for Veterans with terminal cancer continued. My nurse came out to the house twice and we finished sections 3 and 4 of the 7 part program. It is helping. The whole purpose of the study is to help me find meaning in my life in its final stage.

My next appointments at Mayo are with the pulmonary department to see if I can get the Pleurex Catheter removed and with my Oncologist to determine my next course of treatment. According to what comes out of these appointments I will know more of what comes next.

In the meantime the new Medicare RX plan I signed up for has denied my pain killer medication. It seems you just can't win with Medicare Drug plans.

That's it for now.

Here's this weeks' contribution to the "New Normal".

Every Now & Then

Every now and then a feeling comes my way
That takes me back to a place & time
I would have loved to stay

Romantic were those days
my spirit always hot
and I in search of love and life
confounded by others not

Oh lovely Fredericksburg 
In winter clear and cold
The “Natural Child” that coffee shop
Where Hippies go we’re told

And Katherine and Linda 
And Christian and Arlene
My heart was broke a hundred times
And healed and then made clean

By Folk songs sung by friends of mine
About the world we knew
And war and change and love of course
Though our experiences were few

Midnight walks through college grounds
ignoring the winter chill
a sly embrace at dorm room’s door
Enjoying the forbidden thrill

A ride through town in VW Bus
named with humor Thor
bubbles streaming out the windows
of the bus’s door

brightly patched bell bottoms
nestling on sweet hips
Embroidered shirts of Chambray 
Unlipsticked and unglossed lips

The smell of patchouli and clean young bodies 
smiles winsome and willing without guile
a toke and a bit of Hendrix
An adventure for a while

The year was nineteen-seventy-one
When boys turned into men
I miss the feeling of that time

Every now and then

Hang in there, 

RT

Tuesday, December 19, 2017

31

Today is our 31st Anniversary. It doesn't seem like it has been that long. We will celebrate with a catered (sort of) dinner from Olive Garden tonight. It's one of the few food choices that I believe I can eat. My nausea and lack of appetite keep me from enjoying foods I would otherwise love.

We both noted that the time has seemed to fly by. We looked back at our time together in our 30s, 40s, and 50s and wondered where it all went. The special thing about this anniversary is that we both know we love each other more now than ever. It would be impossible to stay together otherwise. 

Vicki has been taking excellent care of me even when she is feeling under the weather. It has been a struggle for her. We are hoping she will get some relief next month from the pain in her legs. She is scheduled or will be scheduled for vein surgery. I am hopeful that it helps.

I am draining my right lung every 4th day now. That is a 3 day interval. I'm not getting much fluid which gives me hope that they will remove the pluerex catheter as soon as the end of January. We just have to wait and see what they say when I go back to the Mayo Clinic on the 17th.

My Grandson Caleb visited me today. He brought me cookies my  oldest daughter Bridgette had made me. It was nice to talk to him and find out how things are going with him and his brother. It turns out that he was really messed up when he broke up with his first love. They had been together for several years and he took the breakup very hard. I hope he can get himself back together. I believe he is trying.

I am doing my best to eat and gain weight back. I am down to 151 which is too low for my size. Ergo cookies and Ice Cream whenever I feel like it. My breathing is coming easier as well. I am able to walk to the mailbox and back without running out of breath. I will start walking as soon as I can.

I am off the clinical trial for Stivarga and won't know what we will do to combat my cancer till my appointment at Mayo on the 17th of January.  Right now my focus is on getting my lungs in shape and getting rid of this catheter.

That's it for now.

Here's this weeks' contribution to the "New Normal"    

Unintentional

Rain drips, soggy trees bend in wind
the skylight sounds like a snare drum
when the storm throws its fury down
in long lashing streams of liquid bullets
ricocheting off the house and landing harmlessly
on lawn and flower bed and shrub

a small river runs down the middle of our street
washing from side to side and then finding its course
the low spots of the tarmac are instant riverbed
detritus, leaves and other debris float by
like tiny barges set out for market 
only to run aground just past the pothole

Winter’s waning with this storm
the moisture stays after the fury is gone
bringing succor to bulbs and living roots
giving hope to new life and friendlier days
Though the Storms outcome 

is surely unintentional

Hang in there,

RT

Thursday, November 30, 2017

Better Late than Never

It has been a couple of weeks since I posted. There is a good reason for that.

After my first visit to the ER at Mayo I've been back in the hospital (Mayo) for a four day stint. During this period they installed a Pleurex Catheter in my right side. This allows me to drain the fluid buildup at home instead of going in to the hospital. It is not that comfortable, but doable with a little help from pain killers.

In addition, one of the doctors on the Palliative Care team recommended I stop taking the Stivarga as well as the Semvastatin I've been taking for years. He researched my file and could not find any evidence that the Stivarga was doing me any good. The Semvastatin has been shown to cause muscle weakness when taken for long periods. I am hoping to see my energy and stamina increase.

There was a complete screw up with getting the Pleurex Bottles and Sterile kits which caused Vicki to have to make 5 separate trips up to Mayo to get bottles and kits so I could drain at home. The case of bottles just arrived yesterday.

At first I was draining every day and getting a full liter of fluid. That went on for four days. The fifth day of draining only got 800 ML of fluid and I had extreme pain in my back and shoulder. I called Mayo and they recommended I come in to the ER again. We decided that I would just go to Chandler regional and get an X-Ray. The X-Ray showed the catheter was in place properly and they released me to got home. I waited a day to drain and got 500 ML of fluid.

I skipped a day again and then got 300 ML of fluid. After two days I drained again and got just 50 ML. I reached out to Mayo and they had me come in for another X-Ray. That was yesterday. The X-Ray was good and they put me on a 3 day drainage schedule. So I won't drain again till Sunday. If the fluid output remains small they will pull the catheter in a few weeks. That's the best news I could have gotten.

While at Mayo yesterday I had my first session with a Veterans with Cancer project that is set up to help Veterans with terminal illness. It was very interesting.

I will continue with the project if possible.

So that's why there have been no posts till now.

Here's this weeks contribution to the "New Normal"



Time Was (a singular conversation)

“Time was when we were relevant
movers and shakers were we”

Some can still shake it a little
Others think they have the moves
Now I don’t mean to belittle
but this crowd has lost its grooves

“Time moves on it’s the true Mover and Shaker
No holding it back or slowing it down”

I concede time’s the action taker
Nothing stops it coming around
So maybe we can’t shake our money maker
The way we did with the 60s sound

“Still we feel inside like we did back then
Though our exteriors have changed their shape”

Don’t blame us for feeling lost at times
We’ve forgotten more than you think
We’ve listened to many decades’ chimes
and many ice cubes clink

“We’re on second and third and 4th Careers
We’ve retired and come back again”

Many have found new spheres
Of influence and endeavor
So be wary my little dears

Though old we’re still quite clever
 
That's it from here.
Hang in there,

RT

Sunday, November 12, 2017

My Veterans Day

This year Veterans day came on Saturday. It meant it was the first time since I was released from active duty in 1971 that I actually had Veterans Day off. Unfortunately I was unable to put it to good use.

For the 3 or 4 days leading up to Veterans Day and especially the last 2 days I had trouble breathing along with severe pain in my right chest and back. Unable to sleep for those 2 days, exhausted and depressed, I made up my mind to get in the shower on Saturday morning, shave and brush my teeth so Vicki could take me to the Emergency room at the Mayo Clinic Hospital in Phoenix.

I chose to go up there rather than the closer Chandler Regional Hospital because they had already drained the fluid from around my lungs once back on October 19th. They had all my records, my latest scan and I believed they would just do a better job at helping me. I was right.

Vicki pulled up to the emergency entrance and put me in a wheelchair. When I told the nurse who came out to get me that I was having trouble breathing she immediately took me into a triage room, pulled up my records and got me into a treatment room. There they hooked me up to a heart monitor, an oxygen monitor, performed an EKG and got me ready for the ER Doctor. He came in shortly thereafter and asked me what was going on. I explained about the fluid build up and the pain. 

He ordered a shot of painkiller and a couple of x-rays. The x-rays showed more fluid than I had back in October. I was taken into the ultrasound room where a technician prepped me for another Thoracintesis.

The radiologist came in and started draining the fluid. Once again it went smooth, I felt no pain and all was good till the very last. This time they removed 2.2 liters of fluid, a large amount. During the final moments I came down with a hacking cough and severe wheezing. It was very scary. I felt as if I couldn't get my breath and panicked a little bit. Luckily the cough and wheezing went away, then returned again, the went away again. It freaked me out.

Due to my coughing and wheezing they were unable to drain any more fluid. The ER Doctor had x-rays taken after the procedure and they showed I still had a substantial amount of fluid left.  We discussed my options which were having a catheter implanted to drain the fluid or have the lining of lung scarred surgically to cause the inner and outer linings to adhere to one another thereby leaving no room for the fluid. There doesn't seem to be any way to just stop the fluid build up. Kind of a bummer.

My next appointment is this coming Tuesday. I will talk with the Clinical Trial Coordinator and the Hemo nurse about my options. I feel like I need to stop or exit the trial and get this problem fixed first. The combination of the exhaustion caused by the Cancer drug and the inability to catch my breath (just getting up to go to the bathroom required a few minutes to get my breath back)   mixed with severe pain and the inability to sleep makes the prospect of repeating the process intolerable. I truly feared for my life at a couple of points during the previous week.

I am unsure what will come next. 

Here's this week's contribution to my "New Normal"


Uncommon Tones

Not everyone has the sweet mellifluous tone of Jewel
or the raspy, catchy blues brilliance of Stevie Ray
Some try their best but the result is cruel
and they find themselves unable to say

Just what it is that works them inside
Heightens their fears and makes them abide
Alone and afraid just wanting to know
That there’s someone to whom they can go

For shelter and comfort 
Laughter and Play
Hugging and Kisses
Someone who’ll stay

With them the whole night
Not slipping from their bed
Waking up in the moonlight
No note that they’ve fled

And leaving them lonely, stony and cold
There in the bedroom with no one to hold
Wondering, pondering were they the fool

Thinking they could sing their love like Jewel

Hang in there,

RT

Thursday, November 2, 2017

Halloween, The World Series, and nearing a week off

For the first time in  a couple of decades my wife and I participated in handing out Halloween Candy. This was due to our Granddaughter Briana asking us to join them at their house in Gilbert on Halloween night.

She and her boyfriend have just purchased their home and we were glad to see they had such a nice house. We put chairs and a table in the driveway and gave candy to the trick or treaters. Briana did the actual handing out and Vicki and I engaged the parents and kids in conversation. It was a nice night.

The World Series ended Thursday with Houston taking the championship. I hope it helps the Hurricane affected folks feel a little better. The series was both interesting and entertaining, with some midnite drama in game 5 with a final score of 13 to 12 for the Astros. The Dodgers tied the series at 3 to 3  in game 6 forcing a game 7. For the first time in many years the games kept my interest and were enjoyable to watch.

This week and the first of next marks the end of taking pills for Cycle 5. After this coming Tuesday I get a week off. I am hopeful that this month I will regain some strength during  my off week.

That's it from here,

Here's this weeks' contribution to my "New Normal" 

Stuck (Poet’s complaint)

I am stuck with unfinished poems
Like laundry left undone in the machine
Some thoughts and threads do splinter
Before I find out what they mean

I’ll take it as a sign to be patient
Forgetting the ease of the past
Remembering what work must be done
If what I’ve created will last

Even though to me they’re living
Just in this moment alive and complete
To readers or listeners in the future
Perhaps they need legs more than feet

To mention their timely creation
And their living in memory so brief
Would be far more than gilding the Lily
More like teaching theft to a thief

More like mist are these thoughts poetic
More like rain than water or ice
More intense than flame or fire
More often more naughty than nice

If given free rein this thing would remain
In limbo neither darkness or light
So I attempt to control, though I often extol
Damn it’s difficult to get them just right.

Hang in there,

RT