Even with the health issues outlined in my last post, I felt driven to finish this:
“ElectroLove” – August 29, 2014, Electronica. Download
As usual, it will be available on soundcloud.com as well
I hope you enjoy it.
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),
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,
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),
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,
My Doctor just called with the lab results from my procedure last week.
Good news: The cancer is a low grade bladder cancer. It’s not aggressive. There is no known relationship to my carcinoid tumor. We meet in his office on the 19th next week to remove the stent.
Bad news: It recurs frequently. About 50% likelihood of recurrence and then we have to do this all over again.
The Doctor said now that he knows for sure what it is, if it recurs, he can treat the bladder with a chemo after removing the tumor which will decrease the likelihood of recurrence. He also said that “now everyone at the hospital knows the special procedures for you” so there should not be any problems. Maybe I’m a little cynical but it’s a large hospital so I do not think “everyone” or even all of the anesthesiologists are aware of what has been done twice for me. But, at least it’s on record.
I feel much better today. No pain killers since Sunday evening. Still very tired but I have been out to breakfast with friends Sunday and made trips to the dentist and my PCP (personal care physician) today. I am going to a meeting tonight and plan to attend my meditation meeting tomorrow night.
So I will be checked again for bladder cancer in September, carcinoid cancer progression in August or September. Let’s hope we have no more drama then or between now and then… I want a good summer!
May we all have the best possible outcomes!
Just found out about this on the ACOR Carcinoid group. There is a new handbook that is very good at explaining NETs and Carcinoid to non-medical people and gives lots of valuable information (including about Carcinoid Crisis which I have hammered on lately). The Zebra Talk Handbook is available here:
The Philly NETs which is a resource/support group for NETs/Carcinoid. Simply click on the Adobe Logo below the image and download it. Thanks to the folks who worked to produce this.
I also have it available here: zebra_talk_handbook-2014-06-08 , if you have a problem with the other website. This is not guaranteed to be the latest as they plan to update it regularly.
I urge all people diagnosed with NETs or Carcinoid Tumor to find out all they can about the disease. Many medical people do not know. They need your help! Be your own advocate. Start with the pamphlet above, then read Neuroendocrine Tumors – A Comprehensive Guide to Diagnosis and Management and give a copy to your doctor! Yes, it’s technical and scary, toughen up, you will need to be tough to survive this. During this also go and read everything on The Carcinoid Cancer Foundation website. While doing all of this join online and local support groups. Knowing others with the disease will help tremendously both with information and emotionally.
May we all have the best possible outcomes!
Yesterday was the day for the bladder cancer procedure. It was intended to be an outpatient procedure but I stayed overnight in the ICU.
Why? First, one of the ducts between a kidney and my bladder was partially blocked so a stent was put in. Second, as I outlined in A Busy Cancer Day, I had made sure that the anesthesiologist was aware of the risk of Carcinoid Crisis. Here was what he told me when we met before the surgery:
I was extremely impressed with his willingness to go the extra mile for me.
No crisis occurred! Rah Rah! Three tumors that we had seen in the cystoscopy (interesting to see the inside of your bladder on TV) were removed and the urologist found a fourth that had been hidden and removed it. The urologist said that he “plucked” the tumors out and scraped the inside surface of the bladder to remove any cells that might be there. The larger tumor hid the opening of the duct from the kidney so the urologist had to put a stent in to make sure the duct stayed open. He intends to remove the stent in two weeks (office procedure).
After the procedure, I was taken to ICU where I spent the night. There I was interviewed, poked and prodded by doctors, interns, nurses and med students, all of whom expressed thanks for learning about a rare disease. Most of them did not seem very interested in the bladder cancer. I overheard one nurse tell another that I seemed to know more about carcinoid than the doctors.
The hospital medical team was concerned because my pulse rate was low through much of the night, often around 45 bpm. So I have to visit my PCP next week. He knows all about it and I had a Cardiology review just three days before! My resting heart rate has often been that low for at least the last nine years. I do not think anything will change.
Now I must have a cystoscopy every three months for a year and then yearly because this cancer is known to come back. The urologist says the cancer looks like a low grade cancer but we will wait for the lab tests to tell us. I asked that the lab test for any carcinoid cells in the tumors.
Overall, this was not at all as bad/painful as I had anticipated. I am very thankful for that.
Surely this was my best possible outcome,
EDIT: June 6, lots of pain today. They gave me no prescription at the hospital so I have had to call the doctor to get a prescription called in to the pharmacy. Did not expect it to be this bad.
Today was quite a busy day for cancer stuff…
First I met with a Physician’s Assistant for bladder cancer pre-op evaluation. Had blood and urine tests and EKG. In return, I gave her this paper:
I have Carcinoid Cancer. Among other things, this means that I could experience Carcinoid crisis during invasive procedures, stress, or anesthesia.
Carcinoid crisis is when all of the symptoms of carcinoid syndrome come at the same time. Carcinoid crisis is the most serious and life-threatening complication of carcinoid syndrome, and is generally found in people who already have carcinoid syndrome. The crisis may occur suddenly, or it can be associated with stress, chemotherapy, or anesthesia. It is characterized by abrupt flushing of face and sometimes-upper body, usually severe falls in blood pressure and even bronchospasm with wheezing can (infrequently) occur. The attack may look like an anaphylactic attack. In my case it probably would include bradycardia (35 bpm sometimes).
Epinephrine and pressors will provoke – not help carcinoid attacks. Do not use anesthesia drugs mixed with epinephrine.
Attached are two descriptions of protocols recommended and used by carcinoid experts.
Here at Franklin:
Dr. Anondo Paul Stangl used a similar protocol which may have saved my life when he was performing chemoembolization on me and I had a crisis.
Dr. Philip Neff and his anesthesiologist used a similar protocol when I had liver surgery last year. I did not have a crisis during the 5.5 hour procedure.
These doctors are just across the hall from urology if more information is needed.”
NOTE: please have the tumor lab tested for carcinoid as well as the more normal. Let me know of results.
The PA was suitably impressed with the information and said that she would have an anesthesiologist assigned early and make sure that she has this information. The surgery is scheduled for next week, June 4. As I have pointed out before, this is essential to insure that a carcinoid patient survives anesthesia and stress and invasive procedures.
Later that day I met a new PA to discuss my carcinoid. She studied and approved of what I did above regarding carcinoid crisis. No changes in my treatment for now.
Then I had the Sandostatin injections that I have every four weeks.
We cannot avoid sometimes our day revolving around our cancer! Thankfully tonight is a meditation meeting.
May we all have the best possible outcomes,
Depression among cancer patients is a well known phenomenon. Carcinoid cancer patients are no different. In fact, there is some evidence that they have depression to a greater degree. Studies have shown that cancer patients will usually survive longer with reduced depression.
I bet that each of us who have gone through the process of finding carcinoid cancer in our bodies have had bouts of depression. Many of us have struggled for years to actually get a proper diagnosis. Along with the tumors and the pain and diahrrea and flushing comes fatigue. Maybe we find that we cannot rid ourselves of this depression. Then the cancer diagnosis brings fear. After a while it seems that your friends and loved ones are not as attentive as you need.
What can we do? Many times, oncologists won’t ask about or treat depression or recommend treatment. If you are severely depressed you may need to see a psychologist. If you are mildly depressed or deep into fear, your solution could include exercise and meditation and perhaps spiritual counseling.
If you have a religion, you should definitely seek guidance from a spiritual counselor that you trust.
Exercise can help your body fight your cancer and also reduce stress and depression. This was a major part of my program for recovery. I walk 2 to 3 miles nearly every day. I also go to a gym a couple of times a week when I can.
Mediation has been a major part of my health regime. As luck would have it, I had started a meditation program with Shambhala Meditation about 9 months before my diagnosis. There are many Shambhala Meditation Centers all over the world. There are certainly other places that teach meditation and other forms of mindfulness. Once I was diagnosed with Carcinoid Cancer, I put a lot of time into meditation and I continue to meditate. Meditation helped me to deal with the fear of having cancer, with the sickness and pain of the treatments as well. To me, meditation has helped me keep a positive attitude and live with the sickness and pain with compassion for myself. It gives me the tools to offer that compassion to other sufferers.
I encourage all cancer patients to actively seek psychological, spiritual, emotional help. Doing things for yourself like exercise and meditation should be part of your life every day.
May we all have the best possible outcomes,