My Cancer Story – Parting Thoughts http://www.partingthoughts.net By Michael Slater Tue, 24 Oct 2017 03:08:22 +0000 en-US hourly 1 In Memoriam – Michael Slater 11/15/55 – 6/19/16 http://www.partingthoughts.net/michaels-memorial/ http://www.partingthoughts.net/michaels-memorial/#respond Tue, 24 Oct 2017 03:00:05 +0000 http://www.partingthoughts.net/?p=2149 Michael’s Memorial Michael’s memorial service was held on August 21, 2016 at the Glaser Center in Santa Rosa. Michael’s wife, Irene Stratton, shares the video... Read more »

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Michael’s Memorial

Michael’s memorial service was held on August 21, 2016 at the Glaser Center in Santa Rosa. Michael’s wife, Irene Stratton, shares the video here in two parts:

Memorial Program

A PDF of the program can be viewed or downloaded here.

Transcript of Irene’s memorial talk during the service (PDF)

Transcript of Patti Stratton Jordan’s memorial talk during the service (PDF)

Michael’s life story as shared by Richard Mains during the service (PDF)

PostScript from Irene

In response to some expressions of concern for me, here is a bit about life after Michael.  Although it has been devastating to lose my beloved, and the grief process is ongoing, I want to reassure people that I’ll be OK.  We shared so much, but I have always had parts of my life that were separate from our couple-ness.  Singing in the choir, spending time with my wonderful friends, keeping involved with our kids’ lives, and pursuing interests that Michael didn’t share have now become the center of my life, instead of just part of it.  The gifts of music, nature, friends, and family nurture me and uplift me.  I’m not there yet, but I believe that eventually all of these will allow me to fully embrace this new phase of my life.

Obituary

Michael’s obituary, written by Irene, can be viewed or downloaded here. (PDF)

Tributes In Industry Publications

A memorial written by Linley Gwennap in Microprocessor Report, which Michael founded. (PDF)

EE Journal article by Jim Turley (PDF)

EE Times article by Rick Merritt (PDF)

Computer History Museum, Mountain View, CA
Oral History Project, May 16, 2016

Video

http://www.computerhistory.org/collections/catalog/102738140

Interview Transcript

http://www.computerhistory.org/collections/catalog/102738141

Presentations by Michael

Published on Apr 19, 2012 by Webvanta

Michael Slater, CEO of Webvanta (www.webvanta.com), gives a five-minute whirlwind history of computer technology

Talk for the Analy High School AP Computer Science Class

Comments from Friends and Colleagues

Search Facebook for Michael Slater, Sebastopol for many comments

Check out Michael’s Blog for April 4th, where you can hear Michael and friend Mark reminisce and hear his delightful laugh.

From Brian Berg:

Michael Slater: An Untold Story

Much of Michael’s newsletter inspiration, and many of his earliest writers, came from the Asilomar Microcomputer Workshop (AMW). I rode down to my first AMW with Michael and another friend in 1987, and I remember him talking about a newsletter he was planning to start later that year.  The rest is history. I am so very pleased that David Laws and others at the Computer History Museum (CHM) created an Oral History of Michael.  Anyone with a love of history should check out the rich archives of Oral Histories on the CHM website. May Michael’s name be remembered!

From Deena Monchick in response to obituary:

Our world is a better place because of Michael. From his innovative work that touched countless people to his impact on individuals he personally inspired. He & Irene were my first mentors. He taught me as much as I could consume, inspired a fascination w/ technology & helped me become the person I am today. Thank you, Michael. I will forever be grateful for you and your life.

From Nancy Pressel Alpert (comment on PT post):

Don and I have you in our thoughts and prayers. You are a blessing to many people. It has been hard reading your blog. Sometimes I think the most important thing we can do with our lives is to share our pain to help others. This is exactly what you are doing through this blog. You have taken something so raw and turned it into something beautiful. Thank you.
Sending lots of love, Nancy

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The End Game…. http://www.partingthoughts.net/the-end-game/ http://www.partingthoughts.net/the-end-game/#comments Fri, 24 Jun 2016 04:52:13 +0000 http://www.partingthoughts.net/?p=2139 Irene here to finish the story:  Michael’s last post was June 9th, when he went on hospice, choosing to be sent home from the... Read more »

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Irene here to finish the story:  Michael’s last post was June 9th, when he went on hospice, choosing to be sent home from the hospital, rather than endure more intervention that had scant chance of helping.  It was a difficult decision to make, but Michael had always been adamant about his desire to end his days at home, not a hospital.

He did get his 2 units of blood on Friday 6/10, and that did seem to make him somewhat stronger, but when they tested his hemoglobin after the transfusion, it had brought it up to 7.5, which is still very low.  It was clear that he needed more.

Sunday 6/12 Michael’s dear friend Mark, whom he has known since 7th grade, came to visit with his wife Pattie.  We had a wonderful time with them.  Because Michael has been so candid in his posts, I will share this: Saturday and Sunday brought another development that was pretty disturbing to see, Michael’s amazing brain was now really compromised.  He tried to complete some work for Webvanta that normally would have taken him an hour or two to accomplish.  I watched him struggle for hours and finally was able to talk him into allowing someone else to complete the task.  It was very, very hard for him to admit defeat, and very hard for me to insist.

Hospice agreed to pay for another blood transfusion and they scheduled it for Wednesday 6/15. Monday and Tuesday he was very weak, and sleeping a lot, but still able to talk and think, with a little help to keep his thoughts on track. We were so hopeful that more blood would bring his energy level back up. During this period of time Michael was still counting on having a big Garden Party to which many people from his Microprocessor Report days were invited, as well as local friends and family. His family and I were becoming more and more certain that he wouldn’t be well enough for such a thing.  On Thursday, it became apparent that the transfusion had not helped. His body was beginning to shut down.

We decided to cancel the big party, and just invite friends and family to come. By Thursday afternoon Michael was sleeping most of the time, with brief moments of wakefulness and clarity of thought. Friday was much the same, and by Saturday it was clear that he had few days left.  The gathering on 6/18 was lovely. Many close friends and family came by and took turns being with Michael to say goodbye and tell him of their love and appreciation of him.  We’re hopeful that he was able to hear and take in the words and love he was given. It was a great opportunity for people who were close to Michael to connect with each other, again, or for the first time.  I was able to just dip in and out of the party, taking breaks to cry or sit quietly, while others kept food and drink flowing.

In the early hours of Sunday, 6/19/16, Father’s Day, Michael passed away in his sleep. A great mind and generous heart has passed from this world.  Though his last week saw a precipitous slide in his condition, I am aware that it could have been so much worse for him.  Michael faced this cancer journey with such grace and courage, but his biggest fear was what he called “the End Game”.  He was worried that he would be in great pain and would linger long in that state. Thankfully, his pain was easily controlled by his meds, and his last days were mostly peaceful.

RIP, my love,  Irene

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Transition to Hospice http://www.partingthoughts.net/transition-hospice/ http://www.partingthoughts.net/transition-hospice/#comments Fri, 10 Jun 2016 05:59:57 +0000 http://www.partingthoughts.net/?p=2136 This is a short post so I can update everyone without more delay. With anemia and an assortment of pain meds, it has become... Read more »

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This is a short post so I can update everyone without more delay. With anemia and an assortment of pain meds, it has become challenging to maintain enough wakefulness to write.

Tuesday morning I awoke needing to go to the bathroom, and found a lot of blood in the toilet bowl. There were two more similar incidents before noon.

I’ll spare you the details, but the bottom line is that I had an active GI bleed. I had been set up to get another two units of blood, but with the active bleed, they canceled that transfusion.

At this point, around noon, there was deep concern apparent on everyone’s faces. One doctor wanted to send me to the ICU, but I didn’t actually qualify until another major crisis came on.

I think the prevailing view of the doctors was that there was a high chance I would keep bleeding until the end came. Fortunately, that didn’t happen.

Tuesday afternoon is something of a blur. I decided to go on Hospice; I did not want to die in a hospital, and they weren’t going to send me home as a regular hospital patient in the condition I was in.

I am now comfortably resting at home, and the bleeding seems to have stopped. It takes up to 3 days for everything in your intestines to find its way to the exit, so I will know in a day or two if the bleeding has continued.

Tomorrow (Friday) afternoon, I’m going to get 2 units of blood in the outpatient unit at Sutter Hospital. This transfusion should greatly improve my anemia, which would be a good quality-of-life improvement.

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Back in the Hospital Again http://www.partingthoughts.net/back-in-the-hospital-again/ http://www.partingthoughts.net/back-in-the-hospital-again/#comments Wed, 08 Jun 2016 06:01:33 +0000 http://www.partingthoughts.net/?p=2133 For the past few days, my pain level has been a little higher and I had some mild on-an-off fevers. Then, Friday morning, I... Read more »

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For the past few days, my pain level has been a little higher and I had some mild on-an-off fevers. Then, Friday morning, I woke up drenched in sweat, with a soaking wet bed, and a fever of 101.

After a morning of making calls to doctors and waiting for them to call back, we went to the ER at noon. I had high hopes of getting some IV antibiotics and going home, but that was not to be.

My white blood cell count was very high, and I was already on two different antibiotics. So they added more antibiotics via IV and gave me lots of fluid, along with a chest X-ray, an ultrasound, and blood work.

Another Stent Clean-Out

Based on the ultrasound results and an elevated Alk Phos level, they decided to do the biliary stent cleanout right away.
If you’ve been following along since the start of this story, you may recall that in November last year I had a plastic stent put in at UCSF, then in December it was replaced with a metal stent at CMPC. In February this year the stent was cleaned out here in Santa Rosa, and a plastic stent was inserted into the metal stent.

In Friday evening’s procedure, which is endoscopic and pretty much painless, they removed the plastic stent, pulled a balloon through the stent to clean it out, and then inserted another metal stent inside the first metal stent.

I went to bed Friday night with high hopes of going home in the morning. As long as my white blood cell count (WBC) was dropping, they expected to discharge me.

Antibiotic Challenges

Unfortunately, my morning blood test showed that the WBC had gone up 10%. It appears that the current antibiotics aren’t resolving the issue. The infection might be in an area with little blood flow, which makes it hard to reach, or my bugs may have developed resistance to the antibiotics I’ve been taking.

Given this situation, the hospital brought in an infectious disease specialist. She was very knowledgeable and clearly had spent time to understand my situation.

The biggest factor limiting the choice of antibiotics is a note in my chart that says “allergic to ampicillin.” Because of this, my doctors have always avoided all antibiotics that are related to penicillin. Since there were other good options available, the motivation to test a potentially serious allergy just wasn’t there.

Now, however, the situation is different; the alternatives aren’t doing the job. So they gave me a modest dose of IV Ampicillin, with the nurse standing by with rescue meds should I actually be allergic. Guess what? I’m not.

Monday’s Turn for the Worse

I went to bed Sunday feeling pretty good, and reasonably confident that the new antibiotics were going to do their magic and I’d be discharged.

Monday morning, however, had different ideas for me.

I got up to go to the bathroom, and made it literally less than 10 steps before I felt utterly exhausted and had to sit down. I had two more episodes like this during the morning, the last of which was truly scary, and my heart was racing, I felt unable to get enough air, and completely out of control.

It wasn’t quite a code-blue situation, but they called for what they called a rapid response team, which brought 10 or so nurses and doctors from various parts of the hospital. After some IV meds, I calmed down quickly and was able to sleep.

This crisis was due to very low red blood cell counts (hemoglobin of 7.1), so I got two units of blood and I feel enormously better.

So why was my hemoglobin so low? I have a GI bleed of unknown origin.

They did a CT scan, with some special modifications to detect blood flows, and they were not able to identify any bleeding. They did note many issues, however, ranging from growth of the metastases in the liver to new metastases in my lungs.

My Enigmatic White Cells

In general, the white blood cell count (WBC) goes up when your body is fighting an infection. The normal range is 4 to 11 (K/uL). On March 2, my count was 7.7, a perfectly wonderful value. But it broke out of the normal range on April 1, hitting 19.2.

Last week, my WBC was 36.9! As a result, the first session of my new chemo regimen, which would have been Thursday, was canceled. When we came to the emergency room on Friday, my WBC was 43.6, a value rarely seen.

My most recent blood work, Monday evening, shows a WBC of 72, something that none of the doctors, specialists, or nurses here has ever seen.

The infectious disease specialist visited again, and she was very confident that the infection was well controlled by the antibiotics, and that no infection could boost WBC numbers into this range.

Furthermore, I have not had a fever for 3 days, and it seems very odd to have an infection that drives WBC to unheard-of levels yet does not cause a fever or any of the other symptoms of fevers.

Tuesday

Once again, however, another morning brought a turn for the worse: bloody stools and very low hemoglobin.

I don’t have the energy to write up Tuesday’s story right now, but the bottom line is this: I have a very large GI bleed, suspected to be coming from the cancer in some way. I may be able write more later.

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How Am I Feeling? http://www.partingthoughts.net/how-am-i-feeling/ Wed, 01 Jun 2016 05:31:25 +0000 http://www.partingthoughts.net/?p=2130 As someone with a serious disease, a question that I’m frequently asked is “how are you feeling?”. There are many ways to answer this... Read more »

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As someone with a serious disease, a question that I’m frequently asked is “how are you feeling?”.

There are many ways to answer this question, of course. Physically or emotionally? The short answer or the long answer? Where is the line before it becomes TMI?

Getting into details of how I feel causes little privacy gremlins in my head to jump up and down. Having gone as far as I already have with this website, however, I don’t see a good reason to stop at a particular level of detail.

When I started writing my cancer blog, my goals in writing as well as my drive to do so all came from wanting to record more of my thoughts for my family and close friends.

I was surprised when one person after another mentioned to me how valuable my cancer story will be for many people. In thinking about how deeply I wanted to go into the details of how I feel, I decided that including details is what makes personal stories both engaging and more valuable to other people.

Of course, not everyone really wants to hear the details. Here’s three different answers — pick the level of detail you want.

The Really Short Answer

I’m doing ok. Not great, but ok.

The Short Answer

I’m doing ok. For the most part, I’m able to do the things I want to do, though my energy level is lower.

For the past few months, I’ve had almost no pain. In recent weeks, however, the pain has come back.

As long as I don’t have a fever and my pain is controlled, I’ve been able to mostly stay in the moment and enjoy life. I have lots of grief moments and scattered hard days, but many great days too.

The Long Answer

I’m doing ok, though my prognosis remains poor. For the most part, I’m able to do the things I want to do, though my energy level is lower.

From mid-December, when my second biliary stent was installed, I had almost no pain until early May. In recent weeks, the pain has increased, and I’m now taking both methadone (an opiate) and dexamethasone (a steroid).

The biliary stent is prone to infection, and I’ve been on antibiotics for some time. Two weeks ago, I started getting moderate fevers and feeling generally worse. We added a second antibiotic, Flagyl, and within a couple days I felt dramatically better.

Now that I’ve been off the one-week course of Flagyl for a week, the same symptoms have come back, and I’ve just restarted the Flagyl for another week.

Nausea continues to be my most persistent side effect from the treatments I’ve had. I think this is due to the radiation treatments, since it came on strongly just as those treatments were ending. It is an annoyance and makes it harder to want to eat, but it is tolerable.

I’ve been able to eat anything I wanted, but in the past month or so it has taken more effort. I need to eat slowly, or my body tells me it isn’t going to swallow anything more. It makes for lots of pauses during meals, but it hasn’t kept me from eating.

Another side effect is numbness in the soles of my feet (peripheral neuropathy). Like the nausea, the neuropathy is annoying but ignorable. This is a side effect from the first round of chemo, which came on after a delay of months.

My emotional state is, in many ways, more under my control that my physical health — which is not to say that taking that control is easy. Focusing on making each day the best it can be and staying present-focused have helped me a great deal.

As long as I don’t have a fever and my pain is controlled, I’ve been able to mostly stay in the moment and enjoy life. I have lots of grief moments and scattered hard days, but many great days too.

Next?

How I feel varies greatly from hour to hour, day to day, and week to week. On Thursday, I start a new chemo regimen, and that will add a new set of effects, both positive and negative.

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Six Months and Still Kicking http://www.partingthoughts.net/six-months-still-kicking/ http://www.partingthoughts.net/six-months-still-kicking/#comments Sat, 07 May 2016 01:18:29 +0000 http://www.partingthoughts.net/?p=1960 Today it is six months since my cancer diagnosis. I am grateful to still be here! The chemo and radiation have enabled me to... Read more »

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Today it is six months since my cancer diagnosis. I am grateful to still be here!

The chemo and radiation have enabled me to keep going a little longer, fighting back the cancer briefly until the treatment stops working (the original chemo) or the treatment can’t safely be continued (radiation).

Sadly, this is the usual state of affairs for pancreatic cancer. For the cancer I most likely have, duodenal adenocarcinoma, there’s very little data because of its rarity, but the prognosis isn’t much different from what I’ve been told.

It is impossible to say for certain, but the consensus of the doctors seems to be that there’s a good chance I wouldn’t be alive today without these treatments. The treatments and their side effects haven’t been pleasant, to be sure, but I have no regrets about this path.

Starting Chemo Again

Now I am approaching a restart of my treatment, with the metastases in my liver being the biggest concern. I have decided to go ahead with the new chemo regimen, starting at the end of the month.

It will take some time for the doctors to get insurance pre-approvals, so I can’t start immediately. We’re going to take our one-week Portland trip, starting on the 20th, for our anniversary. As soon as we return from that trip, I’ll start the new chemo.

The new chemo regimen, Gemzar and Abraxane, is one used primarily for pancreatic cancer. It’s considered less toxic, but also generally less effective, than the FOLFIRINOX regimen I was on earlier. The results vary from one person to another, of course.

In any case, having tried FOLFIRINOX, the new chemo regimen is the second-line treatment. Because the drugs are completely different, the hope is that the cancer will not have yet found a way around them, as it did with the earlier ones. Whether they are effective on my tumors at all, however, remains to be seen.

No one expects that this chemo is going to cure me; as with all of the treatments I’ve had, it is palliative, intended to buy a little time.

My New Friends, Gemzar and Abraxane

Here’s a brief rundown on the two drugs. Skip to the next headline if you aren’t interested in pharmacology!

Gemzar (gemcitabine) is classified as an antimetabolite (more specifically, a Pyrimidine antagonist). Gemzar has been used in combination with other chemotherapy drugs to treat ovarian, breast, and lung cancer. It was also used as a single-agent therapy for pancreatic cancer, with very modest results.

Here’s the mechanism of action, in case you have the background to make sense of this:

Gemcitabine kills cells undergoing DNA synthesis and blocks the progression of cells through the G1/S-phase boundary. Gemcitabine is metabolized by nucleoside kinases to diphosphate (dFdCDP) and triphosphate (dFdCTP) nucleosides. Gemcitabine diphosphate inhibits ribonucleotide reductase, an enzyme responsible for catalyzing the reactions that generate deoxynucleoside triphosphates for DNA synthesis, resulting in reductions in deoxynucleotide concentrations, including dCTP. Gemcitabine triphosphate competes with dCTP for incorporation into DNA. The reduction in the intracellular concentration of dCTP by the action of the diphosphate enhances the incorporation of gemcitabine triphosphate into DNA (self-potentiation). After the gemcitabine nucleotide is incorporated into DNA, only one additional nucleotide is added to the growing DNA strands, which eventually results in the initiation of apoptotic cell death.

In 2013, trials showed that combining Gemzar with Abraxane (nab-paclitaxel) improved results for pancreatic cancer patients. The increased life expectancy, compared with Gemzar alone, was 1.8 months. In the world of pancreatic cancer, that’s a meaningful improvement, but it isn’t much.

Abraxane is made from the bark of the Pacific Yew tree. The “nab” part of the name refers to the binding of paclitaxel to albumin, which reduces its toxicity.

Here’s the mechanism of action:

Paclitaxel is one of several cytoskeletal drugs that target tubulin. Paclitaxel-treated cells have defects in mitotic spindle assembly, chromosome segregation, and cell division. Unlike other tubulin-targeting drugs such as colchicine that inhibit microtubule assembly, paclitaxel stabilizes the microtubule polymer and protects it from disassembly. Chromosomes are thus unable to achieve a metaphase spindle configuration. This blocks the progression of mitosis and prolonged activation of the mitotic checkpoint triggers apoptosis or reversion to the G-phase of the cell cycle without cell division.

I think I’m going to pass on trying to understand that myself.

My May Break

As things have worked out, May is going to be my treatment-free month, and in June I’m back on the treatment treadmill.

The past few days have been emotionally tough, but I feel like I am on the way back up. Staying present-centered has become more difficult, but more important, than ever before.

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Chemo Again? http://www.partingthoughts.net/chemo-again/ http://www.partingthoughts.net/chemo-again/#comments Thu, 05 May 2016 06:07:38 +0000 http://www.partingthoughts.net/?p=1958 The news from last Friday’s CT was not what we had hoped for. There are two issues: The original tumor’s overall size has increased.... Read more »

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The news from last Friday’s CT was not what we had hoped for.

There are two issues:

  1. The original tumor’s overall size has increased. This doesn’t necessarily represent tumor growth, because it is partially necrotic (dead), which means that the radiation did its work to some degree.
  2. There are new spots on my liver that did not show in previous scans.

This morning Irene and I met with Dr. Brett, my main oncologist, to discuss the CT results in more detail. I had remained focused on the original tumor, but the bigger issue turns out to be the new liver metastases.

From the radiologist’s report:

“Liver: Multiple new rim-enhancing, hypoattenuating lesions measuring 9-11 mm diameter left and right hepatic lobes compatible with metastatic deposits.”

The fact that these new lesions are not tiny, yet were not there in the previous scan, suggests that they are growing rapidly. I now have what is called a secondary liver cancer: metastases of a primary cancer elsewhere in the body, but present in the liver.

If these metastases keep growing, they would quickly reduce my liver function to a point that would significantly affect my quality of life. Dr. Brett estimated that I might feel fine for a month, but would then have a couple months of decline, as my liver becomes unable to support everything my body needs.

No one knows how long any of these times will really be, of course. I appreciate Dr. Brett’s willingness to stick his neck out and make an estimate; I find it helpful to have something to ground myself with, though these are shockingly short time periods, even with all of the preparation I’ve had.

So, Back to Chemo?

Going into the meeting with Dr. Brett today, Irene and I knew that chemo would be an option, and I thought it extremely unlikely that we would decide to do it. I am well aware of the almost irrepressible desire of the medical world to try any available treatment, and how hard it is for doctors to give up.

By the end of the appointment, we were leaning toward giving it a try.

The goal would be to shrink, or at least stall the growth of, the liver metastases, to give me a little more time. How much more is unknown, but it isn’t a lot — maybe a few months. But when I’m looking at increasing from only one month of “feeling decent” time to perhaps 3 or 4 months, it is pretty compelling, if it works.

Dr. Brett estimated that the new chemo regimen would have a 30% to 50% chance of being effective against the liver metastases.

The new chemo, Abraxane and Gemzar, would be significantly easier than the FOLFIRINOX regimen that I endured for 12 weeks. It would be a couple hours of IV infusion, once a week for three weeks, and then a week off. That’s one 4-week cycle.

Unlike the previous regimen, the IV time in the office is much shorter, and there is no pump to take home for two days. So it intrudes significantly less into “normal” life.

The side effects are also less bothersome than with FOLFIRINOX, especially with regard to GI effects. But like all chemo, tiredness and lowered immunity are key side effects. I would really hate to end up back in the ER every two weeks with an infection, as I did through the entire 12 weeks of the previous chemo.

My Choices

Here’s how I see my choices:

  1. No treatment other than simple palliative care. Focus on quality of life and slash time spent on treatments and doctors. Accept that the likely prognosis is a shift to hospice within two or three months.
  2. New chemo treatment. If it works, I have a little more time of feeling good enough to be active. If it doesn’t, I’ve given up some of my precious time to treatments, and suffered some side effects, for no gain.

And that’s where I leave it tonight.

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Living and Dying http://www.partingthoughts.net/living-and-dying/ http://www.partingthoughts.net/living-and-dying/#comments Wed, 27 Apr 2016 22:47:44 +0000 http://www.partingthoughts.net/?p=1527 Venture Beat recently ran a story about me titled, A dying entrepreneur puts his tech business up for sale. Irene and I both had... Read more »

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Venture Beat recently ran a story about me titled, A dying entrepreneur puts his tech business up for sale.

Irene and I both had the same reaction to reading this: it was a little disquieting, though there is nothing inaccurate about it. The issue is how I think about myself; while there have been times that I felt like I was dying, most of the time I don’t.

Semantics

Part of the question is semantic: what does it mean to be dying? In a sense, we are all dying from the day we are born, but this isn’t really a very useful observation. In the medical community, when you go on hospice they consider you as dying; until then, you are are living with a chronic or terminal illness.

One could argue that anyone with an incurable disease is dying, but I’m not sure that’s helpful either. It is a matter of timeframe and probabilities.

Life feels qualitatively different when the doctors tell you to think in terms of months, and not years, of life left. This perspective did trigger in me a radically different frame of mind. At first “dying” is how I would have described it. But in time, with the exception of a couple of bad interludes, I have felt this less and less.

Feelings

Ultimately, I’m not sure the semantic discussion is useful. But whether I feel like I am dying is important.

In the early days after my diagnosis, the feeling that I was dying was strong. Timeframes, when any were mentioned, were a few months. I had constant pain, which was marginally managed by increasing doses of painkillers. I couldn’t imagine going out to dinner, much less taking a vacation.

It was hard for me not to feel, in this state of mind, that things were pretty hopeless. I was wondering if I would see another spring. I was in a “get your affairs in order” mindset.

When I got my second biliary stent installed in December and my pain largely disappeared, it completely changed my outlook. For the first time since diagnosis, it didn’t feel like the future was just a steady downward slide.

Then, when after three chemo cycles I felt considerably more energetic and the CT scan showed shrinkage of the tumors, I was downright giddy.

Unfortunately, the chemo didn’t continue to work. Those first few cycles probably gave me a few more months of life, but there’s no point in continuing.

Now the radiation treatments, recently completed but still doing their work, have provided the next ray of hope — this time, for what may be the final period of remission.

Remission

Remission is the great hope after cancer treatment. Remission is simply a partial or complete reduction of tumor size, number of tumors, and symptoms.

I am presumably in partial remission. After Friday’s CT scan, I’ll know more about the degree.

In terms of symptoms, though, I find it frustrating that they are so masked by the medications that I don’t really know how I would feel unmedicated. I am taking both methadone (an opiod) for pain, and dexamethasone (a steroid) for inflammation. Both have significant withdrawal symptoms unless you taper off of them quite slowly, so I can’t just stop taking them and see how I feel.

I’ve recently started tapering off the methadone, so I can see if the pain comes back or if I don’t need painkillers right now. That will take weeks, and then I plan to do the same thing with the dexamethasone. Right now, I suspect I have at least as many symptoms from medication side-effects as I do from the underlying disease.

Beyond Remission

The hoped-for initial goal after cancer treatment is “no evidence of disease”, which does not mean that you are cured but only that if there is any disease still present, the doctors can’t identify it. I don’t expect to reach this point, though there is always a chance.

In general, if a cancer is going to recur after it has been in complete remission, it will do so within five years, so after five years in remission the word “cured” begins to be cautiously used.

Unfortunately, GI cancers rarely follow this progression; rather, they progress from partial remission to recurrence. At that point, the question is whether there are any new treatments available to treat the recurrence; previously used treatments are generally not effective (in the case of chemo) or safe (for radiation) a second time.

So Am I Dying?

Probably sooner than you, and a lot sooner than I would like. But beyond that, it is all guesswork.

What is most important is that, today, I don’t feel like I am dying. In fact, it seems almost impossible, like a surreal dream, that I am seriously ill. I am truly enjoying life with Irene, my kids, the animals, my garden, and the beauty of Northern California.

The reality of my situation is sobering, of course, when I stop and think about it. But I am focusing as intensely as I can on right now, and right now is good!

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Side Effects Fading Slowly — But Life is Good! http://www.partingthoughts.net/side-effects-fading-life-is-good/ http://www.partingthoughts.net/side-effects-fading-life-is-good/#comments Wed, 20 Apr 2016 03:11:18 +0000 http://www.partingthoughts.net/?p=1507 It’s been longer than usual between posts about my cancer for a good reason: there hasn’t been much new to report. When I had... Read more »

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It’s been longer than usual between posts about my cancer for a good reason: there hasn’t been much new to report.

When I had my last radiation treatment, I thought I had gotten off easy, with only very mild nausea and little tiredness. My worst day was the day after the last treatment, when both symptoms worsened, and they have been slow to improve.

The tiredness did not persist too long. My energy has been good for the past week or so, and I’ve been spending lots of time outside working in the garden.

The nausea has been more troublesome. It is not very intense, but it has been persistent; it is only slightly improved in the past week. With the help of assorted meds, I have been able to mostly ignore it, and I am eagerly awaiting its departure.

The nausea reminds me that I am still recovering from the radiation treatments, and it raises the question of whether there are going to be any long-term side effects. The intestines are one of the most radiation-sensitive organs, and mine got a good blast. Only time will tell.

Delighted to Be Here

These are minor issues compared with the simple and spectacular fact that I am here to write this!

I am coming up on six months since diagnosis. While I have been through a lot, I don’t feel any worse than I did at diagnosis.

In 10 days, I’ll get my next CT scan, and I’ll know how much the radiation shrunk the tumor, and if there are any developments outside the main tumor.

Regardless of what this shows, however, I don’t expect to receive any further treatment in the near term; there just isn’t anything compelling to do.

I am, of course, deeply saddened by my apparent fate. At the same time, I am genuinely enjoying being able to focus each day on doing whatever pleases me. It is oddly like being on an extended, stay-at-home vacation.

Next week, Irene and I will be taking our first vacation trip in almost six months. (Our last trip was to Mill Valley for the weekend, starting the afternoon of my diagnosis.) Feeling confident enough in my health to plan any kind of trip is something of a breakthrough.

We’re heading out to Inverness (on Pt. Reyes), where we are staying in a cottage. And Rio is coming along! This will be his first vacation, at least with us.

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Going Public: the Decision to be Open http://www.partingthoughts.net/going-public-decision-open/ http://www.partingthoughts.net/going-public-decision-open/#comments Sat, 16 Apr 2016 07:28:14 +0000 http://www.partingthoughts.net/?p=1484 Today I posted for the first time on social media about my cancer. The response was swift and heartwarming. I received personal messages from... Read more »

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Today I posted for the first time on social media about my cancer.

The response was swift and heartwarming. I received personal messages from many people I worked with 10 to 30 years ago. These are connections that would never have been made without social media.

I have never been very active on social media, though I have done a modest job of building a set of connections. During the 1990s, I got to know thousands of people in Silicon Valley and in the broader semiconductor and computer industries, as well as in technology publishing.

It is a pity that LinkedIn didn’t exist in the 90s; I would have many thousands of connections from the 13 years I spent writing technical articles, attending industry events, presenting conferences and seminars, and consulting to the semiconductor industry.

Fortunately, I have been able to connect on either Facebook or LinkedIn with hundreds of my former colleagues over the years. Even though my social network activity is low, as is that of many of my connections, this precious resource of connections has been quietly waiting, and now I have some things to share.

With today’s posting (reproduced at the end of this post), my network has come to life, connecting me with all sorts of people I might otherwise never have had contact with again. I’m sure I’ll hear from many more in the coming days.

For the first time in the dozen or so years of their existence, social networks are actually making a meaningful difference to me.

Being Open

There is a natural instinct for privacy among most people, I suspect, when it comes to serious health issues. Several people have commented about how brave it is for me to be so open.

It has been a long process for me to get to this point, but it doesn’t feel like bravery — it just feels like the natural thing to do.

I used to be a pretty private person. I didn’t talk about my health. I never tried to share my life on social media. I have thousands of business acquaintances, but few close friends.

During the course of the past several decades, I’ve engaged in various kinds of therapy, self-development work, and reading, and all of that brought me to a place where I was comfortable being pretty open.

(Brene Brown’s work has been most influential for me in recent years. If you aren’t familiar with her, I encourage you to spend the next 20 minutes watching The Power of Vulnerability.)

Everything Looks Different Post-Diagnosis

While all of this personal development is important, what really enabled me to feel comfortable being very open was the simple fact that I was no longer concerned about the future.

I do care about my personal future, of course, in terms of my experiences and my family. But I don’t care about how other people perceive me because I don’t expect to ever again look for a job, pitch an investor, or sell anyone anything.

What matters to me now is leaving behind as much as I can in a way that may be helpful, or at least interesting, to my family and friends (and perhaps even the broader public, though that is not my goal).

With the death of my mother and step-father in recent years, it struck me how a person’s stories are lost upon their death, if they haven’t written them down or recorded them. I want no barriers to openness and transparency now, as my goals are to tell my childhood, family, and business stories, and hopefully to pass along some wisdom.

My cancer treatment gave me a rich body of experiences that I felt compelled to share. I distracted myself from my various discomforts by learning about the drugs and technologies being used on me. Given my background, it came naturally to play the analyst and write up some mini-tutorials, combined with my personal experiences.

The cancer-related articles will, I hope, become less frequent for a few months, while I enjoy whatever period of remission the radiation provides. This shift in focus will give me the mental space to continue my series of essays, begun with Faith and Religion.

I have countless other essays running around in my head, some of which have been circulating there for years. Stay tuned and find out what emerges!


Facebook and LinkedIn Post

Life is so fragile. One day I am cruising along, in my groove with work and family, and then there is this stomach ache… except that it turns out to be an inoperable cancer.

Many of you probably know me from my previous role in the computer industry, writing Microprocessor Report as well as an assortment of columns for industry magazines, from my digital photo work at Fotiva and Adobe, or from web projects at Webvanta.

Sixteen years after leaving Microprocessor Report, I have returned to writing as my primary activity, creating my new website: www.partingthoughts.net.

The topic is, unfortunately, what it says: parting thoughts.

On November 6 last year, I was diagnosed with advanced cancer of the small intestine. This is a “death sentence” cancer in that treatments are considered palliative, not curative.

This was, of course, a shocking shift in my world. I rethought what I wanted to do with the rest of my life, and it came down to two things: connect with people and record my thoughts.

As a result, I’ve been spending my time with many old and new friends, and building www.partingthoughts.net as a place for me to record my journey and ideas and to connect with a broader community.

I have been through 12 weeks of chemotherapy and 10 sessions of radiation. Now I am waiting for my end-of-April CT scan to show how much the radiation shrunk the tumor.

What lies next is probably just living well for whatever time there is. Thankfully I’m actually enjoying my life greatly when I’m not feeling too sick, treasuring my time with Irene and my kids.

Note: As part of this process, I have made the difficult decision to seek a buyer for Webvanta. See Webvanta acquisition opportunity.

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