Worldwide NET Cancer Awareness Day

Net Cancer Day
Worldwide NET Cancer Awareness Day

 

“If you don’t suspect it, you can’t detect it.”

 

November 10 is Worldwide NET Cancer Awareness Day.

 

NET means Neuroendocrine Tumor which is a cancer that usually grows slowly and generates endocrine substances like seratonin, chromagranin A, gastrin, insulin and others. These substances are natural to your body but become poisonous to your body in large amount causing many different symptoms, illnesses and even death. This is a rare disease. Only about 130,000 people in the US have been diagnosed. Because the symptoms are diverse, it is often mis-diagnosed or not diagnosed at all. Doctors are taught not to diagnose for rare diseases. The classic teaching is: “If you hear hoof beats, don’t think zebras.” Because of this, we call ourselves zebras.

Learn more about NETs here: http://netcancerday.org/

I have Carcinoid Tumor which is a type of NET. It was discovered by accident in my liver during a CT scan of my lungs for a different possible problem. The primary tumor is somewhere in my gut but the doctors have not been able to find it. The primaries can be very small and multiple. It has metastasized to my liver which means it is incurable. I have had half my liver removed with a very large (tennis ball size) tumor in it. This blog has many entries about my struggle with the disease.  To read more, start here: Carcinoid Cancer – My Story

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Good news about bladder cancer, and related stuff!

Last week and this week the news (and my attitude) has gotten better.

Last week I got news that the latest CT scan showed that my carcinoid tumor was stable (still there, not growing, not shrinking).

Last week the Foley catheter was removed.  What a relief!  The two weeks wearing that was more unremittingly uncomfortable than any two weeks after surgery and other medical procedures that I have ever experienced.

After the Foley was removed, I did have to self-catheterize four times a day until yesterday.  Not pleasant but much better than the Foley. Yesterday, I was allowed to stop because it just was not needed.

Today, I was checked for bladder cancer and none was found.  I will be checked again in three months.  Because of my success with the catheters and no bladder cancer, we will not do prostate surgery at this time.  Wow! Yeah!  I have had more dates with the surgeon’s knife than I care for.  I could wait a long time for another surgery and not miss it.  I will have to keep a catheter kit with me in case of problems again but that is no problem.

May we all have the best possible outcomes,

Cy

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CT Scan shows Carcinoid Tumor is stable

I wrote last month that the blood tests showed very low marker values.  Today I got the news that the CT Scan I had last week shows that the carcinoid tumor is stable.

This is very good news.

Hopefully I can now deal with the prostate issue.  Surgery is not scheduled yet but I hope to have it this month so that I will be healed enough to take our scheduled trip to Scotland (grandbaby!) next month.  This week, I get trained to self-catheterize.  Growing old is not for the faint of heart.

Namaste,

Cy

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Again?

This is not about cancer but it is about other health issues old men have.

On last Friday, August 22, I was fishing with a friend in the Colorado mountains and had severe abdominal pain. Went to the Emergency Room in Frisco.  I had been unable to urinate much for more than a day.   They catheretized me and told me to see my regular doctor on Monday to have the catheter removed.  They thought that it was an infection and gave me antibiotics.

On Monday, I saw my doc and he removed the catheter and tested that I could urinate.  All seemed well.  But, Tuesday morning I was again in a hospital ER in the worst pain I’ve ever had (hard to believe given my history).   Again my bladder was full and I couldn’t urinate.  Again, a catheter was inserted and I was told I had to keep it in until I talk to my urologist.  By late afternoon I had talked to urologist and was told that it my prostate.  I have had BPH (Benign Prostate Hyperplasia) better known as an enlarged prostate for over 20 years. Most men have it at least mildly by the time they are 80.  I’m just lucky, I guess.  It has been treated with drugs successfully…  No longer.  I have run out of drug options.  My options are either surgery or wear a catheter for the rest of my life.  A catheter is uncomfortable at times (perhaps more for men than women).  I’m told you never really get used to it.  There can be negative effects from surgery (no surprise there).

I will go for surgery. It will not happen until at least mid-September because of doctor’s schedule and I am not dying or in extreme pain for now.

Unfortunately, I am forced to cancel next week’s fishing and camping with best friends in Wyoming.  It’s too isolated and too rough for me with this problem.  I have told the doctor that I want to be healed enough to go on a planned trip to Scotland in October to see grandson, son and daughter-in-law.

Buddhists talk a lot about impermanence.  All of existence will change and is always changing.  Suffering is not just pain.  Suffering is clinging or attachment to things that will change and will cause us pain.  None of us can avoid pain.  We can avoid suffering by not clinging to the conditions of existence that will/must go away.  My body is teaching impermanence.  Aging is an obvious instance of impermanence.  Can I minimize the mental/emotional suffering of this?  Maybe I will be able to tell you in the future.

Namaste (I bow to the divine in you),

Cy

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New Carcinoid Tumor Marker Results.

I have gotten my blood test markers back for this quarter. Seratonin, chromogranin A and gastrin are all very low. In fact chromogranin A and seratonin are below the normal range! A few months ago, a PA in oncology told me that he had never seen them this low in a patient!  These markers are tests to see if the disease is progressing/changing.  When I was first diagnosed, seratonin was 7 times higher than it should be. Chromogranin A was 3 times too high. Gastrin was 50% too high.

The numbers have been low since 14 months ago when half my liver with a 6.3 cm tumor was removed. Before the surgery the numbers were in the high-normal and sometimes high range and I was feeling ill.  Obviously the tumor was generating a lot of crap into my blood stream! I felt better than I had felt in years just a day after the 5.5 hour surgery. I still feel great although the diarrhea happens occasionally, usually triggered by some food or activity. 

The next thing will be a CT scan which is scheduled every 6 months.

In the meantime, I continue to feel well.  Night sweats and evening chills occur a few times a month as the monthly injections wear off.  The symptomatic diarrhea happens a few times a month, probably triggered by something I eat or do.  I can live with that!

I am fishing a bit more this year. Meditating, going to AA meetings, Working on music and youtube tutorials.  Laurie and I have been to Mesa Verde to see the cliff dwellings again.  All good stuff.  I did not know how bad I felt, how depressed, until after the surgery.

May we all have the best possible outcomes,

Cy

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I Made a youtube Tutorial! and Looking Well.

Part of having a chronic disease like carcinoid tumor is trying to concentrate on the other stuff in your life.  The Carcinoid Cancer Foundation shared this article “The Spoon Theory” on how one lives with a chronic disease.  It is very true.  It may be the perfect response to “But you look so well!”  By the way, I don’t mind being told that, I like at least looking better than I might feel, but that’s just me.  Many others with carcinoid don’t like it much.

Part of my life since retiring and therapy since diagnosis is electronic music. Listening to it (as well as most other music) and making it.  Making music is something I always wanted to do and now I do it.

My latest project has been to produce a tutorial for youtube on how to produce a sound called a “growl bass”.   This is used mainly by Electronic Dance Music (EDM) producers.  I tend to mix genres and wanted to use it in a different kind of music.  There are actually a surprising number of tutorials on youtube on this subject!  But, none of them address the DAW software that I use, Reaper and they all use expensive synthesizer software whereas I use free download synthesizers.

So, I watch a number of tutorials and then attempted to reproduce the sound with my tools.  It took me a week or more but I got it!

Instead of going ahead with my music, I thought “Wouldn’t it be great to make a tutorial for my fellow software users on how to do this? Surely I’m no the only one who want to do it.”  I also thought “How hard could it be?”  Famous last words.  It took about two weeks.  I tried and discarded a couple of screen capture programs before I found one that was acceptable (Apowersoft Free Screen Recorder).  I trained myself on Windows Movie Maker. I bought a better microphone and wrote a script and practiced over and over again.

Finally, this morning I uploaded it to youtube.  What a relief!  But,  what a great learning experience.  Find it here:

Be where you are; otherwise you will miss your life.  ~ Buddha

Namaste (I bow to the divine in you),

Cy

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Music for June 2014

I have finally finished another piece.   With travel, health and other issues I have not been very productive, I know.

This music is a result of experimenting with some tools that I was not familiar with.  I also used the work as an opportunity to practice mixing and mastering some more.  Sometimes one wonders if he really has any art in himself and needs to push hard to finish something. That’s where I found myself and I had to press hard to finish this.

Listen and enjoy (I hope).

“Moody 1″; Electronica; June 1014 Download

May we all enjoy the best possible outcomes in our journeys,

Cy

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