Cy Ball, our husband and father, died in his sleep early on April 21, 2021. He was 73 years old.
Less than two weeks before his death, he underwent an urgent operation to replace the tricuspid valve in his heart, which had been damaged as a result of his cancer. Although his recovery was proceeding slowly, he was approaching rehabilitation with characteristic determination.
Cy was loved by many and will be greatly missed. A memorial service will take place on Wednesday, April 28th. Details (along with an obituary) can be found here.
Cy asked that this website be maintained as long as the information it contains might be of use to other NETs patients.
On behalf of Cy, and in his memory: may we all have the best possible outcomes.
This is a real story. We made mistakes. No apologies… we were trying to serve and protect our family. Doing the best we could with what we had. Our grandkids got COVID-19 around New Years. 4 year old did not get sick, 8 year old had symptoms for about 2 days. Daughter got symptoms. Laurie, my wife, had been babysitting, no symptoms. The dates here are approximate, I lost track.
They all tested positive. I got a test and tested negative.
In a few days, January 20, I woke in the middle of the night. Did not know where I was and got lost in my own bathroom. Managed to get to bed. Went to ER. Was admitted with a positive test with covid. Now my blood pressure would not stay up. I could not stand for more than a few seconds without collapsing to the floor.
After 4 days I was released and never had the usual covid symptoms, but my blood pressure would not stay up. A few days later back in the ER. Blood pressure so low I could not stand up. Terrible pNETS syndrome, fecal and urinary incontinence, mentally very confused. Adding more confusion, I also could not swallow properly (This was a symptom that I was already being treated for, unrelated to COVID or pNETs, we think, and still not resolved on Feb 19.)
What is going on? Has Plague 2020 morphed into Godzilla 2021?
So, the interesting thing about the COVID stuff above was that I never experienced the “normal” COVID symptoms except that my smell and taste were impacted severely.
Returned home on 27th still feeling weak, fatigued, I was reading the Sunday paper on the 29th and suddenly the Carcinoid bowel symptoms hit very hard, I was very confused, plus I could not stand up (literally collapsed). To the NETS experts, I did not change my diet except that I could not eat some things because of the COVID taste/smell thing. In fact, for several weeks, I ate very little. Everything tasted or smelled awful.
Off to the Emergency Room on January 31. Could not stand or walk reliably. Admitted to hospital that evening with very low blood pressure. I was confused and sometimes was not sure where I was or when it was. It was about then that we determined that I was taking three medicines that reduced my blood pressure. They were far too successful! For 1 or two years, my blood pressure had been quite high. The doctors had finally driven it low. We discontinued all but one of the weakest BP meds. This appears to work, allowing my blood pressure to rise to a more reasonable level.
We need to also factor in that the Sandostatin injections, specially when I miss an injection, and sometimes the NET disease itself can drive blood pressure up and down inexplicably. So some times we don’t know why the BP is what is.
For 2 days, I was in the regular hospital then , transferred for 10 days, I was in a rehabilitation hospital. Every day the physical therapist and the occupational therapist came to me and we did exercises while they watched carefully to see if I was steady on my feet, physically strong enough to do well on my own. ( By the way, since I am retired, my thought is that physical therapy and occupational therapy is pretty much the same thing.) Both therapists’ conclusion was that the problem was only the blood pressure, not core strength.
My blood pressure finally rose to “normal” range and I was no longer unsteady on my feet. So I was released and went home. For the last week and a half, I am trying to see my doctors and get to work on the physical problems. This morning my blood pressure was higher than anyone wants to see. I can see that this will be an ongoing story.
One month ago, I received a treatment for my neuroendocrine tumor called Y-90 radioembolization.
Commercial product is called SIR-Spheres.
In radioembolization, tiny glass or resin beads called microspheres are placed inside the blood vessels that feed a tumor in order to block the supply of blood to the cancer cells. Once these microspheres, which are filled with the radioactive isotope yttrium Y-90, become lodged at the tumor site, they deliver a high dose of radiation to the tumor and not to normal tissues. From RadiologyInfo.org for Patients/
This treatment was for a larger, more active tumor in my liver.
The procedure itself was quick (an hour) and painless. It was supposed to be day surgery so that I could go home that day. Instead, I had nausea so bad that I could not use oral pain meds (opoids! Don’t dis me), for two days the pain meds were given IV. Then I got to go home
Wait… Didn’t I have PRRT radioisotope treatment last year for this cancer?
Yes, I did (see Yesterday’s PRRT and follow the thread). Four treatments spaced over 8 months. The last was in August last year. Dr. Liu tells me that the PRRT acts like thousands of BBs throughout the body and does best against small tumors. This larger tumor actually grew during the treatments. He said the Y-90 treatment is like a bowling ball dropped on a very specific tumor in a specific site (in other words, a lot more radiation to a lot more specific place).
Side effects of Y-90.
You will be radioactive for about 3 days. Stay away from other people. (What’s the big deal? We already do that this year.)
These vary with patient but for me, there has been severe liver pain which took about three weeks to go away. There has also been a lot of nausea, stomach pain and gas and bloating which after four weeks has reduced some but not nearly enough for my normal functioning even with medication. If it continues, for more than another couple weeks, I will need to be checked for stomach ulcer which would happen if a few of the radioactive spheres escape the liver and travel through the blood system to the stomach. I am told it doesn’t happen often but does happen. If it is damaged by the radioactivity, I may have to take drugs for my stomach for a long time.
A side effect specific to me was excessive worry because of the fact that I had chemoembolization (similar to above except with chemo instead of radioactivity) in 2011 and it caused a “carcinoid crisis(in my case it was blood pressure and heart rate both going very low and refusing to respond to treatment)” so bad that I very nearly died.
Today, August 20, 2020, I saw Dr. Liu to discuss the results of an MRI and YIPPIE! The tumor is shrunk and may be completely dead! We will test again in three months. As stated above, if my stomach is not better, we will test that also. In the past, Dr. Liu has discussed the possibility of having me do chemo after the Y-90. It would probably be an oral treatment (captem – The combination of capecitabine and temozolomide) and might extend for years. He did not mention it in this meeting and I am happy to let that sleeping dog lie.
Yesterday, I dropped a new generative modular composition called ‘Random-2’.
It is another generative modular piece that I made on VCV Rack software which calls itself a Virtual Eurorack DAW. It is free for download and is open-source meaning anyone can freely download the software code and modify it for their own purpose.
What is generative? To me it means that the notes (melody, harmony, et. al. are generated randomly under some form of control for octave, scale, timbre and other musical properties. Often the voices (instruments) are arranged in a sort of random fashion.
What is a Virtual Eurorack DAW? Virtual means it is software, not hardware. Eurorack is a form of modular synthesizer hardware first specified in 1996 and it is said to be the dominant modular synthesizer hardware available today. VCV Rack can be thought of as a software version of Eurorack that graphically shows what the hardware would look like and act like on your computer screen.
But what is a modular synthesizer? A synthesizer (synth) is an electronic instrument, often played with a keyboard, that combines simple waveforms to produce more complex sounds, such as those of various other instruments. Most bands today will have at least one synthesizer. If you have an electronic piano keyboard in your house, it probably is a synthesizer. Modular means that instead of every part of the synthesizer packed and wired together in your keyboard case (which limits flexibility), all of the parts (modules) are separate and the artist can choose which parts to use and how to wire (patch) the modules together to produce the sounds she wants. The modules are mounted in a case which is defined by the Eurorack specification.
What is a DAW? Digital Audio Workstation is usually software that is used to build an mix music on a computer. Functions would typically include recording, mixing. mastering the audio. Applying special functions to the audio like reverb, delay, compression, etc. At this time, VCV Rack is not as flexible as a full fledged DAW but you can get the audio and video production from VCV Rack to a DAW and do any processing you want. I record audio and video from VCV Rack and import the results into Reaper DAW for my final processing. By the way, I used Reaper’s video capabilities to artfully distort the video.
Having told you more than you wanted to know, here is the composition.
At least I have not wasted all my time during this time of ‘social distancing’.
Yesterday I had the last of the Peptide Receptor Radionuclide Treatment! Wahoo!
For more information about this treatment see my blog here and here.
Although I have only some fatigue today, I know that I will have a few other symptoms for a some weeks. Most people who have had the treatments tell me that the side-effects got less severe with each treatment (typically four treatment, eight weeks apart). This is my experience as well. There are some patients that have severe side-effects throughout the treatment cycle.
Typical side-effects that I typically experience are bad fatigue, abdominal pain (for me only in the mornings), nausea (only intermittent and light in my case) and joint and muscle pain (arthritis for me) is amplified quite a bit.. As today is only the day after and for me most side-effects are delayed a bit, I won’t know how the treatment effects me and for how long until a few days have passed. I know that some patients are not as lucky as I have been and have experienced dangerous and/or very uncomfortable reactions. A good friend had such a strong histamine reaction a few days after the treatment that she was admitted to the hospital.
Too early (7:00 am), the nurse welcomes me. At this clinic, a nurse is assigned to you and one other patient and shepherds us through the day. I love the nurses who do this. We are well cared for. This clinic does two patients in the morning and two in the afternoon.
The other patient, Paul, is already there. He is from Denver also and this is also his 4th treatment. This is a surprise because, in prior treatments, the other patients have been from out of state.
Our nurse hooks us up for the anti-nausea medication IV, somewhat later an IV of amino acids that are meant to protect our kidneys from the radiation is started. The amino acids will run for more than four hours, before the infusion, during the infusion and after the infusion until we are discharged to go home.
Two or three hours after arrival, we walk to the Nuclear Medicine department, pushing our IV poles before us. There the actual infusion of the radionuclide concoction of somatastatin (octreotide) analog coupled with the radionuclide lutesium-177, known as Lutathera, is hooked into the IV to drip into our arm for about 40 minutes.
After the infusion is done, we take the IV poles and walk back to the clinic where we each get a private room because we are radioactive now. For me, I went by wheelchair because I was quite light headed upon standing up from the infusion chair. That stayed with me for at least and hour and only gradually dissipated after that hour.
After that we wait for a couple hours while we snack and are basically under observation to make sure we aren’t having any strong adverse reaction.
Now the Celebration
I have had the good fortune to meet Joe Harris, Oncology Account Mgr, Advanced Accelerator Applications (company that makes Lutathera) at a couple of conventions. Two weeks ago when he found that I would be having the final Lutathera treatment, he promised to bring cake to the clinic. As you can see from the picture above, he brought cupcakes during the waiting period after the infusion. He brought enough for the patients, the clinic staff and the Nuclear Medicine staff. They were really good!
The clinic has a little tradition of “Banging the Gong” after the 4th treatment.
I have been very fortunate to be treated by such a wonderful group of people.
My Dr. says that we cannot perform scans (to determine if the tumors have shrunken or disappeared due to the treatment) for months. This is because the tumors usually swell for a while after they are attacked by the radiation. So…. there will be a CT scan in about three months and the GA-68 PET/CT scan at about six months (the definitive scan).
But, here’s a known result. I have had night sweats and evening chills daily for 10 years. Some oncology nurses call this tumor fever, they can be a misery. They have not happened at all for the past three or four months. Something good has happened!
Just completed and released, “Strut Strange” will be available on Spotify and many other streams and purchase opportunities within two weeks.
“Strut Strange” began as an experiment to learn some new plugins in my software synthesizer of choice VCV Rack. As happens so often, it evolved into music that I liked and that I hope you will like also.
I just created a tutorial about using a software app for midi control with VCV Rack.
TouchOSC is an app available for iPhone, iPad, any Android device. I have used it on Android on both my phone and my tablet. You can buy it for a small price at the Apple App Store or at Google Play Store. It requires a software bridge on your computer to communicate to other software. The Bridge and an editor for layouts are available for download at the publisher’s website https://hexler.net/products/touchosc. That site also has a lot of documentation on using the tool and creating your own layouts.
As you probably already know, VCV Rack has become my tool of choice for creating electronic music. One problem that I have is that, when a patch get large, I find myself zooming in and out a lot to find controls on modules that I want to tweak. If I hook the most used controls to TouchOSC on my Android tablet or phone, I can tweak them without even seeing them on the screen!
An interesting thing to me is that I have done a number of turorials using direct screen capture on my Windows machine. Never before have I attempted to merge and edit a direct screen capture with a live camera video. I had to redo things many times to get it right.