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This is my health blog which will update my friends and family about the status of my struggle with the diagnosis of lung cancer I received in January 2018.  Newer posts will appear first.  To see earlier posts (or to make a comment), scroll down.

December 30, 2023

I’m updating my Health Blog after reading an article in the New Yorker that gives me new insight into the cause of my lung cancer diagnosis.  I had assumed, until now, that it was a combination of bad luck, genetics, and exposure to some “outside of my control” environmental factors.  Someone, who I’m sure had the best of intentions, said it was the chemicals I encountered as a printer that caused the cancer.

Last week I read an article in the New Yorker that changed my perspective on the cause of my cancer.  I uploaded that article to my website and you can read it here:  https://mikerhodes.us/sleeper-cells/

It is a long article (6,355 words), so if you don’t have time to read it, here is the main point I got out of it.  Everyone has cells that mutate (for a variety of reasons) making them candidates for becoming cancerous.  When an incident happens that causes inflammation, the cell can take off and start on the path of becoming a cancerous tumor.  There are several environmental factors that can cause the inflammation, but the article says:

“Tiny airborne particulate matter—designated PM2.5, for its size (no greater than 2.5 micrometres, about thirty times smaller than the width of a human hair)—enters the small airways of the lungs. But the stuff doesn’t detectably damage DNA; it may be that whatever potential mutagens are present don’t reach sufficient concentrations for that. Swanton wondered what might underlie the correlation between air pollution and lung cancer among nonsmokers.”

The article goes on to directly link PM2.5 particles to lung cancer in non-smokers.

I have never smoked cigarettes but I do live in Fresno, one of the cities with the worst air quality and a lot of PM2.5 particles.  Major factors include Diesel Trucks on highways 99 and 5 and the large number of dairy farms in the area.  Together they create a deadly mix of air pollutants.

Knowing the cause of my diagnosis is interesting and motivates me to support improving air quality in the San Joaquin Valley, a project many of my progressive friends have worked on for decades.

Making a transition to my current health – It has been 6 years since my diagnosis of 4th stage lung cancer and I’m happy to say that I have beaten the odds by surviving so long.  I feel fine and go to Kaiser every 3 months for tests to monitor the cancer.  The MRI and CAT scans show that while the cancer tumor has reduced in size it is still there.  The immunotherapy drug they gave me at Kaiser continues working, even though I no longer get the (every 3 week) infusions.

July 17, 2023

I feel fine, but a couple of months ago my primary care physician ordered a random glucoses test that showed my numbers to be higher than the normal range.  On May 23, 2023 my glucose number was 148.  Normal is 85-126.  She said I had Type 2 Diabetes.  That diagnosis got my attention and I am attempting to reverse this diagnosis by more exercise and dietary changes.

Kaiser gave me a blood testing device I use to poke myself with twice a day.  Since I started testing (June 19) I have been within the normal range, except for an 81 reading on June 27.

I have an appointment next week to have a CAT scan.  That will tell me what is going on with the cancer front.  If you go back to the start of this health blog you will see that I was diagnosed with 4th stage lung cancer in January 2018.  That was over 5 years ago!

Nobody said growing old was going to be easy, but it is better than the alternative.  Pam and I just got back from a weekend in Morro Bay where we hiked, had some good meals and enjoyed each others company.  I hope for many more years, having fun with family and friends AND working for the Community Alliance newspaper.  That is important because it gives meaning to life and hope for the future.

January 10, 2023

Health Update

I had a CT scan on Monday (Yesterday) and got the results back last night.  I was concerned because:

1. I’m no longer on Katruda, my immunotherapy medication.
2. There is a notable growth in two Lymph Nodes.
3. My Oncologist set up a phone call with me this afternoon to discuss this development.

This is from the report:

“Lymph nodes: Interval increase of the left common iliac lymph node measuring 2.7 cm compared to prior 2 cm. Interval increase of a retrocaval lymph node measuring 1.4 cm compared to prior 1.1 cm.”

Everything else is stable.  My doctor’s advice is to monitor the growth of the Lymph Node and if it increases in size we will need to take action.  He has ordered a CT scan for March.  If it doesn’t grow we will monitor it closely.  If it has grown he will put me back on Katruda, which means an infusion every 3 weeks, probably for the rest of my life.

There are more aggressive things we could do, but I’m comfortable with the strategy I worked out with my doctor.  For example, we could immediately start Katruda, but if we do he will keep me on that drug forever.  It is possible the Lymph Node will not advance and if that happens I will have 3 months between tests.

I wish I could always have good reports to send out (like the last one), but life isn’t always a bowl of cherries.  I’m a little uncomfortable with this development but not stressed out about it.  I feel fine, not in any pain and am hopeful that this too will pass.

December 30,2022

A couple of days ago I reminded my Kaiser Oncologist to order the quarterly CT, MRI and Bone Scan tests.  He wrote back to say all I needed was the CT scan.  He is discontinuing the MRI and Bone Scan because he no longer thinks those are necessary.  I feel fine and am glad they are not concerned with a recurrence of the brain cancer and my bones are better than when this whole thing started in January 2018, 5 years ago.

You may recall that when I was diagnosed with stage 4 Lung Cancer they said it was unlikely I would live for a year.  The radiation treatment made it so painful that I could not get in or out of bed.  I had to sleep in a reclining chair and take powerful pain medication.

The first six months were the worst!  Then, things started to turn around.  In hindsight, I think Kaiser did a good job with the Western Medicine approach to stopping the growth of the cancer.  The immunotherapy was probably the most significant factor.  That infusion, every three weeks, gave my white blood and T cells the ability to identify and attack the cancer.  The original tumor in my right lung is 1/2 the size it was in the beginning.

A major factor contributing to the improvement of my health is the support of family and friends.  It is hard to quantify how important this is, but in my opinion, having people around that love and care for you is great medicine.

Having access to good food, some essential meds (vitamins, minerals and immunotherapy supplements), a comfortable place to live and meaningful work have created an environment that has sustained my life.

I appreciate everyone who has sent good thoughts my way, offered their advice on how to stay alive and greet me with a smile when we see each other.

I’m optimistic about the future, but this experience has taught me to not take anything for granted.  Looking at my own death (which I thought was imminent), had a way of focusing my attention on what was important in my life.  I have had the opportunity to tell those I’m close to how important they are to me.  I purged enormous amounts of clutter and better organized my life so there is less stress.

I get the exercise I need, hire people to help around the house when needed and am very satisfied at where this life’s journey has taken me.

My goal for the next year is to get the Community Alliance newspaper stable enough to take on a major transition that will keep independent, progressive journalism as a vital part of this community for decades to come.  To do that we have to reach out to young people in a language they understand.  We need to hire young writers and a social media team that will engage younger people to organize for racial, social and economic justice.  To do that the old guard will have to stand back and let new leadership take over.

This is a challenge I’m looking forward to being a part of.

May 30, 2022

Today was the first meeting with my new oncologist, Dr. Zhang.  I was looking forward to this meeting.  One of the first things she told me was that Dr. Prabhjot Bhinder (see May 4, 2022 Health Blog entry) was wrong to take me off of Katruda, the immunotherapy drug.  

Zhang said I seem to be doing well on Katruda and that we should continue with that treatment.  Then, she asked some basic questions about my general health, probing for any sign that Katruda may be causing side effects.

After those questions she asked about my general health and I said I’m doing fine, other than normal aging issues.  She wanted to know what I meant.  I said, “well, for example I’m getting more and more arthritis in my hands and feet.”  She immediately said arthritis is one of the common side effects of Katruda.  I thought it was just age related.

It was her opinion that I should stay off Katruda for a while and see if the arthritis gets better.  She said it would take another six months to see a change.  So, I’m back off Katruda.  She said Kaiser will monitor/test me regularly and if the cancer starts to grow they will put me right back on Katruda.

This came as a surprise to me:  Dr Zhang says that in addition to the tumor in my right lung, I have a bit of cancer in my Lymph Nodes (1.5 cm) and cancer in 4 places on my spine.  Don’t know why I was not aware of that before, but it is important information to have.  The good news is they are all stable and not growing.

I like Dr Zhang, she understands what is going on with my situation, she is thoughtful, communicates well and I look forward to working with her as I continue down this path.

May 23, 2022

Good news.  I received test results for the CT and MRI today I took over the last week.  Everything is stable.  My blood test were perfect and I feel fine and glad to know that even after Kaiser took me off Katruda, the immunotherapy drug, I continue to do well.

May 4, 2022

This is the first update to my health blog in a year and a half.  I got into a regular routine of immunotherapy sessions, testing and living my life without worrying too much about the cancer.

After being told that I “might” have a year to live back in January of 2018, four years went by, the size of the tumor got smaller, there was no cancer detected anywhere else in my body and I’m in good health.   I received a letter on February 4, 2022 that Grace Inouye my Oncologist at Kaiser was retiring.

Dr. Inouye was always there to interrupt my CT, Bone and MRI scan results.  Some of the medical terminology in the reports is impossible for me to understand.  So, she would always put it in words that I was familiar with.  The word “stable” was used and “no cancer in the brain” were words I liked to hear.  She made me feel confident that things were going in the right direction.

After Inouye left, I was informed that I had a new Oncologist, Dr. Zhang, who would meet with me on April 5.  I had been asking for someone to review my CT, Bone and MRI scans I had in February.  That meeting was cancelled and I was told Dr. Zhang was unavailable until May 31.

I demanded to speak to someone about the results of the February tests and after considerable effort (and time), Kaiser set up a phone call with Dr. Prabhjot Bhinder.  She told me the results of the tests were fine and that everything was stable.  Then, she told me that I would no longer be treated with the immunotherapy drug, Katruda.

Bhinder said that Kaiser only authorizes 20 treatments of Katruda and I have had 52.  I told her I thought it was helping to keep me alive.  She assured me (!) that after 20 treatments I had received all of the protection I needed.  Her decision to take me off Katruda was not negotiable.  The blood tests I was doing every three weeks and immunotherapy were over.

Of course, I researched the issue and found out that 20 treatments of Katruda was pretty standard.  Inouye had mentioned that she was keeping me on the immunotherapy, even though the protocol was to stop after 20 treatments.  Bhinder seemed a little perturbed that Inouye had continued the treatment for so long.  The research I read says that my T-cells are reprogramed to attack the cancer within those first 20 sessions and that taking it for a longer period could have negative effects – like the T-cells would attack my organs (liver, pancreas etc) in addition to fighting the tumor.  That could be life threatening.

I have reluctantly accepted my fate and will be watching the results of my next CT, Bone and MRI scans closely.  Those are scheduled for mid-May.

I feel fine right now, but am concerned about the road ahead.

August 6, 2020

I’m going to suspend this Health Blog as of today, after this short update.  My health, at this time, is good.  I have regular immunotherapy treatments every three weeks, I go through a bunch of scans (brain, bone and body) every four months.  All of my blood tests for the last two years are as close to perfect as you can get.  The tumor in my lung has shrunk in 1/2 and I feel great.

If there are any significant changes, I will post an update here, post a notice on my Facebook page and send emails to friends.  So, for now. . .this is the last of my Health Blog posts.

May 21, 2020

Earlier this month I completed a series of tests (MRI, CAT, and Bone Scan) to see how I’m doing.  I’m pleased to report that everything is fine or at least stable.  My Oncologist, Dr. Inouye, says the report is good news.  We will continue the immunotherapy treatment (every 3 weeks) and the MRI, CAT, and Bone Scan every 3 or 4 months.

Honestly, when I first got the diagnosis of 4th stage lung cancer in January 2018 I thought I was a goner.  I believed I had 6 months to live, a year at the most.  The doctors did not give any hope and so I did what most people would do under those circumstances.  You update your Will, finish up any unfinished business and prepare yourself (as much as possible) for the inevitable spiral down.  I even talked to my oncologist about how I did not want to be in pain, a burden on my family with no hope for recovery.  We talked about physician assisted suicide.

Thinking back on that time, I’m surprised at how well I managed to keep a positive attitude.  Having a supportive and loving family was a huge help.  Having a caring community that gave me encouragement leaves me speechless (which is not something that happens very often).  

For whatever reason I have been thinking about what accounts for my survival and good health.  There are so many factors that go into the equation that it is hard to rank them, but here is what I attribute to my good fortune:

• Katruda, the immunotherapy drug I qualified for.  This was the first good news that I got after a couple of months of nothing but doom and gloom.  If I had been given the diagnosis I received 5 years ago, this would not have been an option.  This drug is just a couple of years old.  Katruda helps your white blood cells identify the cancer and destroy it.  The cancer in my right lung has gone from 3.4 CM to 1.6 CM.
• Having a supportive family and friends is a huge factor in my health.  I’m so lucky to have people that love me.  I have felt supported, taken care of and there is so much positive energy coming my way that it feels like I’m being gently hugged every day.
• The third major factor in my good health is having the opportunity to eat well, exercise and having access to some helpful over the counter herbs and vitamins Dr. Sue Stone (may she rest in peace) recommended.

It has also been helpful to have plenty of meaningful work to do, especially as the coronavirus has blown over us like a tidal wave.  I was able to reprint Wild Edibles of Fresno County, write a book about my life, work with the Community Alliance newspaper and the Central Valley Progressive PAC.

I don’t know what lies ahead, things could always come crashing down tomorrow, but one thing I do know is that I have lived a wonderful life and look forward to as many more days in this world as I can get.

April 5, 2020

The trip to Washington DC in early March was a great experience.  They actually let Pam and I into the Capitol for an event sponsored by Nancy Pelosi, honoring Dolores Huerta and celebrating the 100th anniversary of women’s right to vote.  

After hobnobbing at the Capitol Pam and I went to the African American museum on the National Mall.  If you get a chance to go there (I assume that would be sometime after the coronavirus pandemic is over), make that a priority.  The way they display the information is incredible.  You go down deep into the building in an elevator the size of a room.  When you arrive you work your way through the displays on slave ships, slavery, the Civil War and the constant struggle for justice.  It is quite a trip!

By the time we left DC the coronavirus crisis was just starting to get everyones attention.  I would say we were cautious on the plane ride home, but no states had issued a Shelter in Place order yet.  We had even thought, while we were in DC, about visiting New York.  In hindsight I’m glad we decided against that side trip.

By the time most of us realized how serious a threat this virus is, California Governor Newsom was wisely calling for the Shelter in Place order.  I think for most people, the prospect of getting the coronavirus and the possibility of dying from it is frightening.  The panic buying, the refusal of some to take it seriously and the economic collapse that is sure to come certainly does look like something from a post apocalyptic book or movie.

Having recently gone through the process of coming to terms with my own mortality, it (the pandemic) did not strike me as something to get very stressed out about.  I know I’m going to die, probably sooner than later and the coronavirus is just another pathway to that end.  I have totally come to terms with the end of my life, so that leaves me with this:

I actually enjoy the time spent at home, listening to the birds sing, going on long walks with Pam, having all the time I want to write, read and enjoy life.  I wish I could go out and see friends and family but since I can’t do that right now, I am happy as a clam here (mostly) at home.

I have been kept busy working on the Community Alliance newspaper as we transition from a printed paper to a digital format.  You can see our first digital version here: https://fresnoalliance.com/2020/04/ .

Our editorial board has been discussing going digital for a while, but not being able to print the newspaper really accelerated the process.  The work behind making that happen has kept me very busy.  Pam is working from home, so we are busy during much of the day with our work and then we have time for a walk, cooking dinner together, watching something on TV and relaxing.  Life is good.

I hope you are finding a path you enjoy as we Shelter in Place and have time to do all of the household projects (we all have them ) that have been long delayed.

March 2, 2020

The fact that I have not updated this blog for two months tells you that my health has not been on my mind a lot.  If there was something wrong, I would let you know.  If I was posting regularly it would get very boring fast.  How many ways can you say “I feel fine?”  My life is clearly not being defined by my diagnosis and now, most of the friends I run into, don’t even mention it.  Or, they will say “you look great, how are you doing?”  

I’m able to do almost anything I want to do, go wherever I want and life is good.  So, if this is the last post in this blog for a while, don’t worry.  I’m probably doing fine.  If you want to see what I have been up to, check out my Facebook page. https://www.facebook.com/mike.rhodes.7758 .  Or you can call me up and say hi: (559) 978-4502.

I will be out of town this week; Pam and I are going to Washington DC.  Dolores Huerta is being honored by Nancy Pelosi and we have been invited to attend a reception at the Capitol.

January 5, 2020

This is about the 2 year anniversary of when I was diagnosed with 4th stage lung cancer.  My first meeting to discuss an odd pain in my right hip with my General Practitioner at Kaiser happened on January 3, 2018 I did testing on January 4th and the diagnosis was presented to me on January 5.  

Being diagnosed with late stage cancer is a life changing event.  I went through a period of disbelief, denial, some anger, bewilderment, and finally acceptance.  Kaiser was very helpful and got treatment set up right away.  They offered help from their department that helps people cope with these kinds of developments in their lives.  Counseling was available if needed.  They set up an appointment with Radiology, a neurosurgeon, and moved ahead aggressively to start treatment.

My state of mind was slowly accepting that I probably had a very limited amount of time to live.  My biggest concern was that I would be in a lot of pain, would not be able to do things for myself and that is how the people I love would remember me.  I was particularly unhappy with the thought that my grandson, who was 3 at the time, would see me that way and that would be his last memory of me.

And the pain was intense.  There was a lengthly period of time when I was in so much pain I could barley get out of bed or a chair.  The staff had to get me off the table after an MRI or CAT scan.  The spinal bone in my neck was being attacked by the cancer and bombarded with radiation.  I have a pretty high level of tolerance for pain, but this was almost unbearable.  I talked to the doctor about end of life options.

I think the low point was when Pam and I drove up to the Bay Area for a targeted radiation treatment to eliminate the cancer in my brain.  Before the procedure we did another brain scan with a machine that had higher resolution.  When they read the results the doctor told me the cancer had spread too so many places in the brain and there was nothing they could do.

Pam and I drove back to Fresno feeling pretty pessimistic.  Kaiser directed me to have full brain radiation.  Nobody seemed particularly optimistic about the outcome and there was a chance that they would basically fry my brain to the point where I was significantly cognitively impaired (for life).  It was a risk I had to take because the alternative was not an option.  If left alone the cancer in my brain would kill me.

Nobody was offering any hope at that time.  And then, my oncologist gave me the first good news I had for over a month.  She said I qualified for a series of IV treatments with an immunotherapy drug called Katruda that would strengthen my white blood cells, give them the ability to target the cancer cells and kill them.  Katruda is not given to every Lung Cancer patient, but it is compatible with some people who have a specific type of Lung Cancer.  I got extremely lucky that Katruda was available (it only became available about a year before I was diagnosed), I had insurance (it is outrageously expensive) and I did not have debilitating or deathly side affects.

Having such a close encounter with death has its advantages.  For example, I did some examining of my life – such as: is there anything I need to do before I die?  I came to realize that I am remarkably satisfied with my life.  I did all of the usual things (update my Will, made sure my “affairs” were in order, give away a ton of stuff (I didn’t want to burden Pam with that task) and focused on spending time with family and being more selective about what I do with my time.  If I don’t want to do it, that thing does not happen.

Life has been pretty darn good since I faced my own death and made changes that have improved my enjoyment of whatever time I have left.

One thing I realized during this process was that I have made major shifts in my life a couple of other times that radically changed my course.  I will mention three of those major life decisions:

• I stopped taking drugs and using alcohol to excess (which was a problem in my late teens and early twenties).  Just stopped.  It was an easy choice.  I had better things to do.

• When I was in my mid twenties I was a bit of a hippie.  I thought, since I was a teenager, that I would probably end up living in a rural commune and live a quiet and productive live working with like minded people, farming and living a simple existence.  As I got more involved with politics in Fresno that first dream got lost.  There was a time when I considered whether I would fulfill that early dream or devote my life to transforming this world into one that would be a workers paradise, where environmentalism was a way of life, we would stop US Imperialism, stop militarism and bring peace to the world.  Yeah, that sounds like a lot, but we were an optimistic bunch of young activists!

• When I got to know Pam in 1977 I realized that I wanted to spend my life with her and decided I would do whatever it took to make that happen.  Good thing she approved of the plan, otherwise who knows where I would be today.

The point with each of these life changing decisions is that I choose a path and stuck with it.  At this point in time I think that the discipline it took to shape my life is the reason why I’m where I’m at today.  Content with the life I have and looking forward to whatever lies ahead.

Enjoying and making the most of my life, however close it is to the end, is my path for the foreseeable future.  I’m glad you are a part of it.

December 4, 2019

My oncologist Dr. Inouye told me a week or so ago that my MRI, CAT and Bone Scan all came out good.  Stable she said.  I’m always relieved to hear from her that the tests turned out ok, because this is literally a life and death thing for me.  Doing the tests, which happen about every three months, always make me reflect on what I’m doing with the time I have left on this earth.

I guess we should all take pause now and again and ask ourselves – is this what I want to be doing?  I go through a pretty intense version of that every three months (if not every day).  Kind of keeps you on your toes.

Tonight it occurred to me that I had not actually read the report from the last CAT scan that is available online through Kaiser.  I read in the most recent report that the cancer tumor in my upper right lung is 1.6 cm in size and stable.  I thought that I had read a previous report that it was a little larger so I went and checked the previous report.  Going to the December 2018 report, the tumor was 2.4 cm.  Wow!  That is not stable, it is now significantly smaller.  Going back further to April 2018 the damn thing was 3.4 cm.  

I like that trend!

In fact, figuring that out, makes me more optimistic than I had been before. . .and I have been pretty positive lately.  The direction that this is going in makes me feel like I will probably be around for a while, can enjoy my family and friends, possibly for many years to come.  It feels like a weight has been lifted off my shoulders.

October 29, 2019

I just had the longest stretch without a medical appointment (3 weeks) since I was diagnosed almost two years ago (January 2018).  Pam and I took the opportunity to get out of town for a couple of weeks.  We spent some time with our daughter and family in the Bay Area, hung out in Morro Bay, rented a cabin in Wawona (Yosemite) and had an absolutely wonderful time.  It was the first time Pam and I have been alone on a vacation for a long time and speaking for myself – I had a great time.  I’m pretty sure Pam did too.

Other than having a cold for a couple of days, I feel great.  AND, I just heard from my Oncologist that my bone scan came back as “stable” which in medical speak is good news to me.  It means there has been no further damage to my bones from the cancer and there is no new colony that has invaded some new bone in my body.

I will do a CAT scan and MRI in November as they continue to monitor my brain and vital organs.  I expect the best but know that could change at any time.  The reality is that any one of us could have a health crisis tomorrow and it is a constant reminder to enjoy life while you can.

While we were in the Bay Area we went to a presentation by Neil Degrasse Tyson.  He was speaking at the Orpheus theater.  Neil said something that gave me one of those “aha” moments.  Tyson was talking about how people react to their own mortality and talked about how many trillions of combinations of DNA will never combine to create a human and how lucky we are to even be here.  I agree.

The other thing Tyson said that I had never thought of before was how when someone talks about their “heritage” they might say “I was born in New Jersey but my family is from Italy.”  Tyson asks why we do that.  In other words, why go back to one stop along the way after leaving Africa.  He reminds we are all Africans if you go back far enough.  I did a DNA test through National Geographic that shows my family emerged out of Africa and took the southern European route that ended them up in various parts of Europe and ultimately England.

I’m so appreciative that Vanessa (our daughter) got tickets and went with us to hear Tyson, someone I greatly admire.  She and her husband Anool also got us tickets to Hamilton (the national tour).  What a lucky guy I am.

September 26, 2019

Last week was, medically speaking, a busy time for me.  I was at Kaiser almost every day.  It was all routine stuff – giving a blood sample in preparation for my immunotherapy session, a colonoscopy and the immunotherapy itself.

Nothing exciting to report back from any of that.  They did find a small polyp, tested it and I found out a day or two ago that it was benign.

I have been enjoying the fall weather, Pam and I went to the Bay Area last weekend and I’m being honored at the Central California Legal Services next Wednesday (October 2) which is our anniversary.  41 years!

After that Pam and I are taking a vacation, spending time in Morro Bay and Yosemite.  I wish I had more news (after all, this is a health blog), but in this case “No News is Good News.”  Life is good and I’m making the most out of it.

August 27, 2019

The good news is that I feel good and have enough energy to keep up with my four year old  grandson.  The bad new is that my colon test (sent through the mail) came back positive.  That means I will have to do a colonoscopy and “hope” that they don’t find anything of concern.

I was starting to get into a rhythm of the IV every three weeks, (CAT, Bone and MRI) scanning every three months and everything being stable or improving.  When I heard about the “positive” result on the stool test I must say I was a little depressed.  The colonoscopy procedure itself sucks and then I get to know if I have a second life threatening cancer or not.  Oy Vey!

I choose to believe that the positive stool test will turn out to be nothing more than a benign polyp or a bit of blood from another source.  Until I hear otherwise, that is my story and I’m sticking to it.

My days are pretty easy right now, since I have finished the DVD project (a video of the 50 years of the anti-war/draft resistance event we held on June 22 and the two other projects I have been spending time on are not overly challenging.

I was asked to return to the Board of Directors of the Community Alliance newspaper, which I did.  There are lots of balls in the air, but I enjoy the challenge.  The other major project I’m doing right now is working on the Central Valley Progressive PAC (basically trying to move local electoral politics to the left here in Fresno).  

The other important thing in my life is my family.  Right now, I’m treading water (like a duck – calm on the surface, but paddling hard under water) trying to keep my aging mom as comfortable as I can.  She is 87 and in a Residential Care Facility.  Dang, I would do anything to make her more mobile again and reverse the dementia.  

On the happy end of having family, I sure am enjoying my grandson’s visits to our house.  The summer is a great time to have a pool in the back yard and the look of pure joy as he jumps into the water is priceless.

Of course, it is great to have Pam around, since she really is the love of my life.  We were able to go out to a very elegant restaurant last Saturday with our younger daughter Simone and her husband Josh.  We went to the Elderberry House in Oakhurst for Simone’s 30th birthday.

I miss our older daughter Vanessa and her family who now live in the Bay Area.  I look forward to seeing them again soon.

July 10, 2019

I had a bone scan on Tuesday to see if my bones are stable, if any new cancer has spread there etc.  The good new is that the bone scan showed no change since the last time they did this three months ago.

Today, they gave me a CAT scan that will show if there is any organ damage as a result of the immunotherapy, what the status of the tumor in my lungs is and if there is anything else of interest going on inside my body.  As I was writing this the CAT scan test results came in.  Everything is stable, which is more good news.

Otherwise, life has been great.  I helped organize a successful fundraiser to keep the Community Alliance newspaper alive.  Last night they asked me if I would return as a board member and I said yes.  That will need to be finalized, but I would be shocked if anyone objected.  When I was asked, I thought about how much I have been working with them, how much knowledge I have to share and it would feel wrong to just be telling them what to do without taking any responsibility.  So, I will be working more closely with the newspaper and helping it to become better than ever.

To see the article I wrote for the Alliance this month (Fresno’s Radical Past), go to:

https://www.indybay.org/newsitems/2019/07/12/18824644.php

Our family will going on vacation soon – we will be at the beach in Watsonville.  I’m really looking forward to that.  Walks on the beach, hanging out with family, no pressure to take care of all the things that come up during the course of a week.

We did get our pool up and working this year, so that will help us beat the heat while in Fresno.  Speaking of Fresno (our grandson) who is 4 now is swimming like a fish.  Raine Iyall, a family friend, has been teaching him new strokes.

Since there is nothing new to report on the health front, I will leave it there and see you at the next demonstration or community event.

June 11, 2019

Last Thursday I had an MRI which was probing my brain to see if the cancer had returned.  Late in the afternoon on Sunday I got an email from my doctor at Kaiser saying everything looks good.  No indication that the cancer had returned.  I try not to worry about what the report will show, because worrying is not going to help.  You just wait, knowing you will be given the life or death news in a couple of days.

Since all of my tests have come back with good results (blood work, CAT scan, bone scan etc), I feel fine, have no pain and lots of energy, I expected that the MRI would be OK.  But, it is always good to hear the doctor say that.

Other than that, I have been working on a fundraiser for the Community Alliance newspaper (we have an event planned this Saturday), a 50 years of Resistance reunion (about the anti-war/draft resistance movement in Fresno) the following Saturday, we raised more money for the Mike Rhodes Social Justice Scholarship project over the weekend and I’m a judge for the Richard Stone/Fresno Center for Nonviolence writing contest.

I’m keeping myself very busy, so it is a good thing I have a pretty high level of energy.

May 28, 2019

Last night I was reading, as usual, the New York Times.  That is my bedtime ritual – reading myself to sleep.  When I saw the headline “She had stage 4 lung cancer, and had a mountain to climb” it caught my attention.  The article was about a woman who was diagnosed with the same cancer as I have and was diagnosed in January 2018 (just like me).  The cancer had spread to the same areas of her body as mine did.

Her family is very athletic and she is busy traveling the world and climbing some of the biggest mountains there are.  In January 2019 she traveled to Argentina to conquer Aconcagua which is the highest mountain in South America.  You can read the whole story here:

https://www.nytimes.com/2019/05/22/sports/cancer-mother.html?searchResultPosition=1

The article said:

“When Isabella’s lung cancer was diagnosed, in January 2018, she was not sure if she had months or even weeks to live. Bedridden and in excruciating pain with tumors in her pelvis, spine and brain, she qualified for a trial treatment and was prescribed two anticancer drugs that alleviated the pain and blocked the spread of cancer cells. The treatment is usually effective for 18 months, then the patient often deteriorates.

According to the National Cancer Institute, the five-year survival rate for people who learn they have Stage 4 lung cancer is 4.4 percent. About 50 percent die within five months. There are a few who have lived for more than a decade. Isabella, who is thankful to have access to excellent medical care and for her “extra” time of relatively good health, hopes to be one of them. She believes her holistic approach to her treatment has helped mitigate the often debilitating side effects of the experimental drugs.”

I think I know how she feels.  Her experience parallels mine very closely.

I was surprised by several of those statistics.  I did not know that about 50% of people with this diagnosis die within 5 months.  Yikes!  The 5 year survival rate is 4.4% and the treatment she is receiving is only effective for about 18 months.  I don’t know what treatment she is on, but this June will be our 18th month after being diagnosed.

Kind of makes you think, eh?  I’m seeing my oncologist for a routine visit this Thursday so I will ask her what she knows about this 18 month barrier.

I feel great and have lots of energy, so it would be disappointing if there was an expiration date on the effectiveness of the immunotherapy treatments.  I will let you know what the doctor says.

May 20, 2019

It has been over a month since I last posted something on my health blog.  That is a good thing, mostly because I continue to feel just fine and I have been busy.  I will post updates as needed.

April 15, 2019

In September 1970 I did an audio recording of what I was doing with my life, what my expectations were for the future and had the expectation that sometime in the future I would listen to what my 17 year old self had to say.  I found this audio in a pile of reel to reel tapes I in my mom’s garage.  The tapes were in such bad shape I couldn’t even get a company that specializes in converting old analog film, tapes and photos into digital to work on it.  They sent it back saying it was too damaged to work with.

I was rather determined to find out what was on the tapes, so I borrowed a reel to reel tape player.  It bit the dust after getting through one reel.  I tried to fix it but the technology is so old they could not get the parts.  Well they said “maybe” the could get the parts for about $1,000.  The saga continued and I was able to get another reel to reel and it is doing just fine.  I’m now 1/2 way through the project.

The first tape I listen to was my friends and I playing music in a garage, which was really cool.  We weren’t bad.  The next four tapes were late 60’s and early 70’s rock music by the bands I listened to at the time – It’s a Beautiful Day, The Grateful Dead, Steppenwolf etc.  Then there was a yoga session (breathing exercise, yoga postures and meditation) led by Charles Schoelen shortly after The Fresno Yoga Center started.  And then there was this recording of me, which has been the most interesting thing so far.  I have edited the audio to about 8 minutes, but there is more.  If for some bizarre reason, you want to hear the rest of the story, let me know.  

I have formatted the eight minute version as a video.  I have added a couple of photos to the video, which may or may not enhance the experience.  I have changed a lot since 1970, but I really appreciate hearing myself talking about the future and comparing that to how things have turned out.  It reminds me of a time capsule with my 17 year old self inside.  Just enough to make you feel a little uncomfortable.  Here is the YouTube link where you can listen to what I had to say:

https://youtu.be/NVo8qWPv3qw 

April 12, 2019

I had a CAT and Bone scan this week.  That always causes a little anxiety, because by looking inside they can tell if the cancer has grown or not.  It is literally a life and death question, which is why I’m a little anxious to find out what is going on when they peek in and look at my bones and organs.  This time was a little more stressful.  I have had some back discomfort in my spine where they had previously detected the cancer had spread.  

In the end, it was all good news.  There has been no significant change and the cancer has not spread.  It has not gone away either, but nobody was expecting that to happen.

There were a couple of unexpected things that happened this time as I did the scans.  For the bone scan they first give you an injection that illuminates the bones so they can see how things are going. Three hours after the injection they did the bone scan and the technician says to me “your not planning on flying anywhere in the next day or two, are you?” Uh. . . no. “I just wanted you to know if you did you would probably set off their equipment because you are pretty radioactive right now.” Apparently the injection was some radioactive isotope. Who knew? Certainly not me. His advice was to drink a lot of water to flush the radiation out of my body.

Then, the next day (Tuesday), I’m getting prepared for the CAT scan and there is an announcement of a CODE alert over the intercom.  The nurse comes out of the CAT scan room and says we are going to have to go to the other CAT scan machine (which is in a trailer outside) because someone has just had a stroke.  I ASSUMED that it was the person who was getting a scan before me.  I asked the nurse how often something like that happened and she said a couple of times a day.  After she gets me to the other machine I said to her that I had no idea getting a CAT scan was such a risky procedure.  She laughed and said that it is not, that it was not the person in the other room that had a stroke.  Someone was being brought in an ambulance and that there was nothing to worry about.  I have to remember not to make those kinds of assumptions.  <ha, ha>

Otherwise, it has been a good week.  I spoke at the Poor People’s Campaign rally (as a homeless advocate), had a role in the Fresno City Council’s decision NOT to pass a sign ordinance intended to make homeless peoples lives more difficult, finished an article for the Community Alliance newspaper about a big change taking place in our ability to recycle items and am going to the San Joaquin College of Law event tonight where the first Mike Rhodes Social Justice Scholarship will be awarded.

Oh yeah, I almost forgot, probably the biggest project I’m involved with right now is to work on raising enough money so the Community Alliance newspaper continues to print.  A month or so ago, nobody was sure if there would be the resources to print an issue in May.  After working hard to raise money I’m glad to say that we have raised enough money to continue for a while, but we are not out of the woods yet.  Maybe we have chased the wolf from being just outside the door, but the darn wolf is still lurking close by and will return if we are not able to get more people to subscribe and donate.

If having an independent/alternative press is important to you, please subscribe, donate or become a monthly sustainer.  I will post a subscription form below.  You can also contribute online at:

https://fresnoalliance.com/subscribe/

You can also read my fund appeal for the paper here:

https://fresnoalliance.com/newspaper-needs-your-help/ 

March 28, 2019

After over a year of treatment for cancer my life seems like it has returned to a more or less state of normality.  My health is just about as good as it ever was, I have more projects underway than I can possibly complete and I always feel guilty for not doing more.  Ha, ha.  That’s a familiar feeling.

But, don’t get me wrong, I really enjoy what I’m doing and try to squeeze everything I can out of every day.  I eat well, sleep great, get enough exercise and am always simultaneously working away at several projects.

Just to illustrate what I have been doing to keep myself amused, I’ve either just finished or am in the middle of these things:

• Going to Disneyland with Pam, Simone and my grandson Fresno who is now 4.  My goal was to not loose Fresno in the crowd.  Mission accomplished.  We also had a lot of fun!
• I’m helping the Community Alliance newspaper with a much needed fundraiser.  Boston Woodard will be our featured speaker.  Boston has written for the newspaper for many years and just got out of prison so he can come and share his story with us.  I also wrote the fund appeal that will be on the front page of the April newspaper.
• I have ongoing responsibilities with the Central Valley Progressive PAC.  For example, I maintain the database, send out membership renewal notices, keep the website < www.cvppac.org > updated and just trained our new Membership Chair – Steve Malm.  I also write the CVPPAC article each month that is in the Community Alliance.
• Last Friday I sat down with the attorney’s and a judge at the San Joaquin College of Law and selected the winner of the first Mike Rhodes Social Justice scholarship.  The DACA student we selected has demonstrated an interest in and will work with the poor, immigrants and other disenfranchised people in need of legal assistance.
• On Monday of this week Fresno City council member Luis Chavez invited me to bring a group of homeless advocates to his office to tell him what we would like the city to do with the millions of dollars they will receive from Sacramento to impact homelessness in Fresno.  It was an extremely positive meeting.
• I’m working on an article about what is going on with recycling in Fresno.  There have been national stories (N.Y. Times, NPR, The Atlantic etc) about how China is no longer accepting our stream of recyclables that we had been sending them for years.  Many municipalities are now sending their recyclables to landfills or incinerating them.  I met with two Public Information Officers representing the City of Fresno and Republic Services about what they are doing about the situation.  I also met with a City Council member about it earlier this week and have an interview and photo session set up for Friday (tomorrow) to see how Mid-Valley sorts the material they collect.
• Also on Friday (tomorrow) I see my oncologist at Kaiser.  Next week I go back to the hospital for an IV session to give me Katruda, the immunotherapy drug I’m on.
• Then there is my mom who is in failing health.  That is probably the biggest stress I have in my life right now.  I won’t go into the details here, but this is difficult shit to deal with both emotionally and practically.
• I have a couple of projects that are on hold for the moment – The Wild Edibles of Fresno County book that I want to re-write and get new photos for AND the reel to reel tape project; which is on hold until I can get a reliable reel to reel tape player.  If you have one, give me a call!  This is about a bunch of tapes I found in my mom’s garage, cleaned up and want to see what is on them.  The one tape I have been able to listen to so far was a jam session, probably in a garage, with a bunch of friends in the late 60’s or early 70’s.  I also recorded events around town (like at coffee houses – do you remember Cafe Midi that used to be on Maroa and Fern?) and would love to recover that history.

This is all in addition to exercising, the endless domestic tasks everyone has to deal with and I’m trying to attend a few live music and political events each month.

Let’s just say I’m not bored.  I’m also, almost entirely, doing exactly what I want to do.  Having a health crisis does get you to focus on what is important (which is going to be different for every person) and think about what you want to be doing with however much time you have left.  Interesting how the threat of death has helped teach me how to live.

March 13, 2019

I now have a regular routine of going to Kaiser for an immunotherapy treatment every 3 weeks.  It is painless, short (about 1 hour) and seems to be working.  About every 3 months I get a bone strengthening treatment by IV, usually at the same time as the immunotherapy.  Also, about every 3 months they do a CAT scan, MRI and bone scan to see what is going on.  They are also doing blood tests regularly to make sure everything is OK.

I have to say that I did not think I would be around this long.  When they first diagnosed me it was pretty depressing.  Nothing but bad news and more bad news.  After I finished the radiation treatment (which was not fun) and I started on the Katruda (immunotherapy) things started to improve and normalize.

My diet changed, I lost some weight, I’m able to exercise (walking a couple of miles a day) and I have great support from family and friends.  Sometimes I even think I feel better now than I did before the diagnosis in January 2018.

At other times though I feel like I have “the Sword of Damocles” hanging over my head and it is a reminder of how fragile life can be.  Sure, we all know that at some time we are going to die.  My problem is when I feel fatigued or have an unusual pain somewhere I wonder if it is the beginning of the end.  When that feeling comes over me I take it as a reminder to appreciate the here and now.  

For example, it was a real pleasure to go out on Sunday night to Studio 55 and listen to live music, visit with friends and support a good cause – the Dakota Eco Village project.  You can see and hear a couple of minutes of the show by going to my Facebook page at

https://www.facebook.com/mike.rhodes.7758

and watch Lance Canales and the Flood doing their thing.

Next week Simone (my daughter) and my grandson Fresno and I are going to Disneyland.  He is 4 years old and we will have a great time.  So, life is good and I’m making the most of it.

That sword of Damocles may be out there but I’m not going to live in fear that it will visit me anytime soon.  If it does, it does, but until then I’m going to live life to the fullest.  I hope you do too.

***

In my previous Health Blog Post I ended with “I think I’ll go for a walk.”  Alert reader Simone Cranston-Rhodes remembered that line from a Monty Python and the Holy Grail skit that she and I sometimes joke about.  Here is a link to that very funny clip 

https://www.youtube.com/watch?v=Jdf5EXo6I68

After getting the above link and watching this clip I have to warn you that if you are not a fan of dark humor, you might not “appreciate” it as much as I do.  On the other hand you might want to watch the whole movie.  This is another of my favorite scenes from that movie:

https://www.youtube.com/watch?v=t2c-X8HiBng

February 26, 2019

There are at least three things that I think are contributing the most to my continued good health. They are:

1. The immunotherapy (Katruda) I get at Kaiser.
2. My diet, supplements and a few medications I take.
3. Keeping my stress level low.

There are other things that are important to my good health, but it is difficult to quantify them.  For example, the love and support I get from family and friends.  I know I feel better when I exercise each day and when I have something meaningful to do with my free time.

I have been a little more stressed lately due to my mom’s declining health.  As her only child I feel the weight of her situation on my shoulders.  Lately, I have felt like things were just getting worse and there was nothing that I could do to improve the situation.  If you know me, I don’t like to dwell in dark places, so this was particularly frustrating for me.  Finally, after weeks (perhaps months) of bad news my mom and I talked to a neurosurgeon yesterday who offered some hope.  There is a procedure that has been recommended that holds open the possibility that some or all of the issues she has been experiencing can be reversed.

My mom will not be running the 50 yard dash any time soon but I am hopeful that we can dramatically improve her quality of life by relieving some of the pressure that has been building up in her brain.  Having a plan for how to address this health issue for my mom is a big stress releaser for me.  My heart rate has gone down significantly since yesterday when we talked to the doctor.

Otherwise, my life has been good.  I helped organize an event last Saturday that brought Boston Woodard to Fresno.  He has been a writer for the Community Alliance newspaper for the last 14 years from inside the Prison Industrial Complex, where he had spent the last 38 years.  He was our voice from the inside to let our readers know what is going on inside the prison walls.  Do you know that as a journalist you can’t write a story by going inside and interviewing someone?  There are barriers against doing something like that.  But a prisoner can send letters out and Boston reliably told us the truth about them stacking prisoner three high in bunk beds, the horrible conditions inside solitary confinement and how the guards create a crisis to get more overtime.  Boston was retaliated against numerous times and it was great to see him last Saturday.

Boston will return in June as the speaker for the Community Alliance fundraiser.

My personal medical treatment for cancer at Kaiser has been reduced to one visit every three weeks for an immunotherapy session.  Every three months, more or less, they do a CAT scan and MRI to make sure there are no unpleasant surprises lurking about inside.  But, that is easy and I’m really glad not to be going it as often as I was at first.  There was a time, with radiation therapy when I went in every day for weeks at a time.

My conclusion, at this point in time, is that things are going well for me.  If I can keep my stress level low, continue the immunotherapy and can continue to eat well and exercise I might be around for a while.

That said. . . I think I’ll go for a walk.

February 7, 2019

The first three days after my Katruda (immunotherapy) and Zomada (bone strengthening) appointment last Thursday were pretty rough.  I mostly did nothing, but experienced a number of the usual side-effects, like constipation, nausea and low energy.  It kept me home and I was unable to attend the memorial service for Sue Stone and Nancy Kelly.

By mid day on Sunday I was feeling better and I’m fine now.  But, it is amazing how being thrown off your schedule for a few days can be challenging.  I keep pretty busy and even a few days of idleness can make me depressed.  So, it is great to feel good again and continue working on the projects that are meaningful in my life.  

Some of the projects that are important to me are:

Taking Care of my mom who is having a difficult time at this point in her life.  She is having problems remembering things (like using her walker) which has resulted in several falls.  We are working with Kaiser to determine the cause and what, if anything, we can do to help.  I have a CAT scan appointment tomorrow (Friday) for her.  Just getting her to Kaiser and back to the Residential Care Facility is challenging.

I have been spending a lot of time coordinating a visit for Boston Woodard to Fresno.  He is a writer for the Community Alliance newspaper, was recently released from prison and has an amazing story to tell.  He will be in Fresno on February 23 and then return in June as the keynote speaker for the paper’s fundraiser.

I have spent a lot of time working on the Central Valley Progressive PAC.  I’m the webmaster, maintain the groups database, write a monthly article for their page in the Community Alliance and a few other odds and ends.

I am fortunate to have a supportive family that I love to spend time with.  Just keeping up with them would be enough for most people and I do what I can to do just that.  Some days there are just not enough hours in the day to finish my “TO DO” lists.  I’m never bored.

Got to leave it there.  It is time to have lunch with a friend. 

February 1, 2019

Yesterday was not a particularly fun day for me.  I went to Kaiser for an immunotherapy session (IV, usually takes about an hour) and they informed me that it was time for a bone strengthening IV too.  Either one of the two leaves me tired and fatigued, but both of them at the same time always knock me back for at least a few days.  I did not even have the energy to write this yesterday.

Tomorrow I have back to back memorial services for friends who have recently died from cancer.  Sue Stone and Nancy Kelly.  It is probably obvious why this is challenging for me (to attend the services), but both Sue and Nancy’s passing surprised me.  Sue had seemed so optimistic the last time I saw her (kind of like I am) about her prospects for not only surviving but for completely eliminating cancer from her body.  She looked strong, had a good medical plan and was way more knowledgable about health issues and what treatments she needed to cure cancer than I will ever be.  She was a doctor and I had every expectation that she would be fine.  Then I got a notice of her death on Facebook.  Nancy Kelly was a friend who also happened to have bought a house Pam and I owned on Hedges near Calaveras (about 30 years ago).  She had, not too long ago, moved to the Bay Area.  She had contributed recently to the Mike Rhodes Social Justice Scholarship Fund at the San Joaquin College of Law.  Nancy was an attorney.  I had read about her struggle with cancer a couple of months ago in a USA Today story about US citizens going to Cuba to get immunotherapy treatment that was not available to them in this country.  Nancy was having a hard time, because of the travel ban, to get the medicine that might have saved her life.

I would very much like to attend the memorial services on Saturday to honor their lives.  It will be challenging for me to go because I feel fatigued from my own therapy, it will be both emotionally and mentally difficult to say goodbye and it will remind me of how tenuous my own life is.  I could very easily go from feeling fine (once I get over the fatigue from the most recent IV treatment) to being gone from this life.  It brings into focus how precious and fragile life can be.

I do appreciate whatever time I have left and all of this is a reminder to enjoy life as much as possible.  I do have a lot to be thankful for – like your taking the time to read this Health Blog, my usually good health (even since the diagnosis) and my optimism about the future.

Since being diagnosed with cancer I have managed to write a book about my life, which (in case you are interested) is available on Amazon.  Here is a link to my book:

How I found love and a Meaningful Life in Fresno

Also, my friend Vic Bedoian did an interview with me in June of last year about my life.  The intention was to play it after I passed away, but since that has not happened and there is no indication that it will happen any time soon, they played the interview on KFCF 88.1 FM about a month ago.  Several people mentioned that they had heard it.  I’m glad they did.  Rych Withers, the executive director at KFCF, was kind enough to send me a copy, which you can listen to here:

Vic Bedoian interviews Mike Rhodes about his life

The last thing I will leave you with today is a link to an article I wrote for the February Community Alliance newspaper.  Here is that link:

Fresno Ended Homelessness, Here is How it Happened

January 22, 2019

The report is back from the MRI brain scan – It was a good report showing no cancer.  It is always a great relief to hear good news like that.  They will perform another MRI, CAT and bone scan in about 3 months.

January 21, 2019

I took another MRI test today at Kaiser.  This is the test that will show us if the cancer has re-emerged in my brain.  I’m hoping the answer is no, but it is impossible not to worry that it has, since that would put me in a very serious health crisis.  I’m not sure what the options would be if the MRI did show brain cancer.  Probably more brain radiation, but I’m not sure.  Probably depends on how much is there and where it is located.  It is always a little unnerving as I “WAIT” to hear the results, which is usually a couple of days.

I had a Katruda treatment last week.  That is the immunotherapy they give me through an IV about every three weeks.  I also had a visit with my oncology doctor last week and she seemed to think everything was going well.  She said that I was about at the six month mark in getting Katruda and that she would order another batch.  At least she has some confidence that I will be around for a while longer.  The stuff is not cheap!

My weight has stabilized at about 170 pounds.  A year ago I was about 190 and got down to 165 a month or so ago.  I remain pain free, I have enough energy to keep up with my 4 year old grandson and sure hope I stay alive – there is just so much I want to do.

1. Spend more time with family.
2. Update Wild Edibles of Fresno County (the book I wrote in the 1970’s).
3. Figure out more family history.
4. Start some and finish other projects around the house.
5. Take a road trip or two with Pam.
6. Make sure my mom lives out whatever time she has left in as much comfort as possible.

There are lots of plans I have that depend on my being around for a while longer.  Thank you for reading my health blog.  It is great that I have so many friends and well wishers – I love all your positive feedback.

January 3, 2019

It was one year ago today that I went to my primary care physician complaining about a pain in my hip, which I thought was probably something like arthritis.  I had felt the pain for about a month every time I walked, but not being the type of person that goes to the doctor over things that I consider minor, I put off going to Kaiser.  All it took was an x-ray to tell my doctor what she needed to know.  She said she thought I had cancer.  It is hard to put into words how that makes you feel.

Of course, I hoped she was wrong.  As I drove home the implications of it all got me thinking about how this would change my life if I did have cancer.  I thought of the plans Pam and I had to enjoy the next phase of our lives – like sitting in the back yard with a glass of wine and watching the sunset.  I thought about my grandchildren who I would not see grow up.  I also thought about my mom, who is 20 years older than I am.  I’m an only child and her care has been coordinated by me.  What would happen to her if I was gone?  Geez, these are things nobody ever wants to think about.

It took a week or two to take a biopsy, do some other testing (MRI, Cat scan, etc) and the results confirmed a diagnosis of 4th stage lung cancer.  It had spread to my bones, lymph nodes and brain.  Not good.

It was hard telling Pam about what was going on, but we don’t keep things of significance from each other.  She seemed shocked.  I never smoked and had no history of cancer in our family.  We told our younger daughter Simone what was going on but had to wait for a week or so before Vanessa returned from a trip to India with her husband and young child.  I would not have the conversation with her on the phone, so we drove to their condo in Oakland.

I could not bring myself to tell my mom for a month or so and then tried to soften the blow, suggesting it was not that bad.  That was in the midst of radiation therapy where they zapped my bones and brains every day for weeks at a time.  That was the worst.  I thought the bones in my neck were going to collapse and the pain on a scale of 1 – 10 ranged from 5 – 9.  The pain killer (a pretty strong narcotic) didn’t even help all that much.  At some point I told my doctor that if this was how my life was going to be, I wanted to talk to her about physician assisted suicide.  It is not that I wanted to die. I just did not want to be in constant pain, with zero quality of life and unable to even get up and out of bed.  I had to sleep in a reclining chair for weeks because I could not get out of bed if I laid down.  If I had a year or less to live (which is what the doctor told me) that is not how I wanted to live.  I did not want everyone I love to think of me (their last thoughts) as in excruciating pain, unable to get out of bed and probably not very pleasant to be around. That was the low point.

Then, I got the first good news I had heard in a while.  My Oncologist said that the sample of biopsy she sent in to be analyzed, the type of cancer I have and some markers in my body made me a good match for a new immunotherapy drug – Katruda.

As the doctors told me it would, the pain in my neck (the spine) started to recede and the neurosurgeon said that he would not have to operate.  He said the spine was stable and I no longer needed to wear a neck brace. 

The brain was a big concern, because brain cancer is hard to treat.  They thought they could use a cyber knife on it so they sent me to a Kaiser facility in the Bay Area.  I went up there and they sent me back to Fresno, because there was more cancer in my brain than they could see with their equipment in Fresno.  The solution to this was full brain radiation which they can do here in Fresno.  They made a facial mask for me which I would put on during each treatment.  They used the mask to basically bolt my head to the table, so I did not move during treatment.  I had some anxiety about doing full brain radiation.  Sometimes the patient experiences diminished mental capacity.  But, what are you going to do?  The alternative is to not treat it and die from brain cancer.

Apparently, the brain radiation worked and several MRI’s since have shown no return of the cancer.  I need to call and schedule another brain scan tomorrow.  Kaiser is good about following up and testing me at regular intervals. 

The immunotherapy is working  The tumor in my lung has been reduced by 1/3, the lymph nodes are stable, bones are stable, it has not spread to anywhere else and so far there has been no return of cancer to my brain.  

As these developments started to move in a better direction, I was in no pain and had enough  energy I started feeling more optimistic.  I started walking, I had changed my diet, was taking a bunch of healthy supplements and started to feel more normal.  

I wrote a book about my life, received several lifetime achievement awards, got invitations to speak to numerous groups and life just got better.  I feel incredibly fortunate to have a loving family, good friends, good health care insurance and the ability to appreciate the life I’m living.  I want to spend more time with Pam, we might do some traveling, continue spending time with my daughters and their families and I have a couple more books I want to write.

The first book will be an update of Wild Edibles of Fresno County, which I wrote in the 1970’s.  I want to improve the writing, use color photos, add recipes for how to prepare the plants and herbs and tell readers more about how the people who lived here for thousands of years before Europeans arrived – how they used the Wild Edibles of this region.

I was also inspired recently by a gift Simone gave me, the book Vintage Fresno.  While the book has some really interesting historical facts, it has such a bias for the wealthy that it was hard for me to read.  Edwin Eaton, the author of Vintage Fresno, was a banker and he wants the reader to believe that it was the builders, developers and big farmers who built Fresno.  Somehow he leaves out the working men and women who did the work.  Not a word about union organizing, the Industrial Workers of the World and the Free Speech fight in 1910-11, and nothing about the immigrants who played such an important role in developing the rich culture we have in Fresno.  I want to write a people’s history of the city I grew up in.  My grandson is the 6th generation of our family in this area.  He and everyone else needs a more complete and honest history of Fresno.

It has been one year since my primary care physician told me she was pretty sure I had cancer, I felt like I should acknowledge the date.  I want you to know that I feel great, have no pain and that the treatment I’m receiving seems to be working.  I hope to be around for as many years as possible, knowing full well that things could change at any time.  Somehow, I think that makes me more alive and in the moment than I have ever been.  Thank you for reading my Health Blog.  It is the best way I know to stay in touch with my friends and family.

December 30, 2018

Just a brief entry to let anyone reading know that I’m doing fine.  I’m enjoying the holidays and there has been nothing significant to report.  I will put a notice on my Facebook page and send out an email blast when there is a Health Update.

I don’t anticipate any real news for a week or so when I have my next Katruda IV and soon after that an MRI to see what is going on in my brain.

December 11, 2018

I had a couple of big medical tests today.  We do a CAT scan and a Bone scan about every 3 months.  This tells us if the cancer is growing, stabilized, or decreased.  The test six months ago showed that the tumor in my lung had been reduced by about 1/3 and everything else was better or stable.  The test three months ago and the one today showed that things are stable and my bones are doing as well as can be expected for a 66 year old guy.  I consider it a good report.  I will have an MRI brain scan in January to see the status on the brain cancer.  It has been eliminated through radiation, but sometimes does come back.  The last couple of tests have shown it to have been eliminated, or if it is there it is too small to detect.

Our family went to Monterey this weekend as a get-a-way.  We visited the aquarium, ate out, had a chance to re-connect and had a great time.  It is challenging for me to always eat a healthy diet when I’m on vacation and it made me think about what, out of all the things I do, is keeping me alive.

Is it:

• The medical treatment Kaiser is providing?
• Keeping my stress level low?
• My diet which I have changed – I now eat more vegetables and fruit, less sugar, more organic food, a bit less meat and fewer deserts.  I have lost about 25 pounds.
• Exercise?  I walk about 5 miles a day
• Supplements?  I take a lot of supplements for bone strength, immune enhancing pills and several other things.
• I know I have lots of people sending me good thoughts, prayers and well wishes.
• Marijuana (now that has got to be helping)!  
• Almost zero alcohol.  Over the last 11 months I have had maybe 6 beers and 10 glasses of wine.  I never drank a lot, but I haven’t had this little alcohol since I was 15.

Given all of that, I still feel that I’m just one unfortunate turn of events from dying.  Like today, the report could have been different.  They could have found that the cancer was growing and had spread to new areas.  I could be dead in a month.  And that is a constant thing in the back of my mind and a factor in just about every major plan I make.

On a day to day basis I compartmentalize the dark side pretty well – almost nobody knows that I do have these dark thoughts, because I’m usually doing something positive with myself.

Not knowing what the future holds and not knowing what is the major thing keeping me alive cuts both ways.  Should I have that piece of birthday cake and feed the cancer the sugar it craves or hold myself back and deny the pleasure of German Chocolate cake (my favorite)?  Spoiler alert:  I ate (over a three day period) two small pieces and encouraged Simone (our daughter) to take the rest to their house.

I have had some people tell me to go on a strict veggie and fruit diet and it will starve the cancer.  Maybe they are right.  I have no way of knowing, but I will say that I got tired of eating carrots and celery sticks and am not strong enough to resist a slice of cake on my birthday.  So I will hope that it is a combination of what I’m doing that is working and that the cancer will not grow into a monster if I have an occasional desert.

Regarding my request for input on what I should do next with my life.  I got a lot of feedback on that.  I would say the most suggested thing was to spend more time with family, followed by updating and re-publishing the Wild Edibles of Fresno County book.  My plan is for Pam and I to work on the book together, combining two of the most mentioned options.  I already see a lot of Simone and Fresno (daughter and grandson) which is great.  I will continue doing that.  I see my mom as much as I can, seeing her two or three times a week and taking her out to dinner every Monday.  The place where I could spend more time is Hayward, where Vanessa, Anool and Amelia (older daughter, her husband and our granddaughter) live.  They have a spare bedroom and would like me to go up and spend more time with them.  I would like to do that.

That is it for now.  I still feel great, have no pain and have lots of energy.

November 30, 2018

I had an appointment at Kaiser yesterday that did not go exactly as planned.  Usually I go in for my Katruda (immunotherapy treatment), they ask me how I’m feeling and since everything has been good they mix the meds for the IV and I’m outa there in about an hour.

Today there was a problem with my blood test – my Creatinine was high.  That is an indication that my kidneys are not performing normally.  They gave me an IV to hydrate me and then did the blood test again.  The 2nd test was well within the parameters, so they gave me the Katruda.

In the two hours it took to redo and get the results back from the blood test I gave some thought to how tentative this house of cards really is.  If I have a bad reaction to the Katruda (like it is damaging my kidneys) they could very easily stop the treatment.

It is not like I don’t know that my life is more fragile now than it ever has been, but this was a good reminder of that fact.  I think that if Kaiser took me off the Katruda and wanted to treat me with more traditional Chemotherapy I would think long and hard about that option.  I would probably check out the new immunotherapy drugs Cuba has developed.  It is my understanding they are similar to Katruda, but not approved for use in this country.  Also, it would be great to go to Cuba and see how things have changed since I was last there in 1978.

For now, I’m OK and have no reason to travel to a foreign country to get my medical care.  I still have no pain, I have plenty of energy and am enjoying life right here in Fresno.

There was a guy in the Chemotherapy room I talked yesterday that said he had been diagnosed with 4th stage lung cancer 4 1/2 years ago.  He said he felt great, but that he refused to take Katruda because of the side effects.  He said it zapped all of his energy.  So, he was back on Chemo and feeling fine.  Different approaches work for each individual.

After getting back from Kaiser I got a call saying my mom had fallen and I needed to get over to her Residential Care Facility to see if she needed to go to Kaiser.  She was not in any pain and only had a bruise on her forehead.  I talked to her for an hour and she seemed fine.  If I had taken her to the ER at Kaiser it would have taken hours and she would probably be in worse shape than if we didn’t go.  At least at the facility she is at she can rest and recover.

Yesterday was not a good day.  Today is better.  I try to make each day as good as possible, but sometimes things out of your control just take over.  That was yesterday.  Today is a new day and I’m looking forward to enjoying life as fully as I can.  The sun is shining, I feel fine and have great friends and a loving family.

November 13, 2018

I met with Dr. Inouye, my oncologist, today.  It is always enjoyable talking to her – this is probably especially true since things are going so well <ha, ha>.  She can detect no problems or serious side effects from the meds I’m taking.  I will see her again in December after a CAT scan and MRI.

Through September 30 of this year Kaiser had spent $416,000 on the treatment of my medical condition – 4th stage lung cancer.  The immunotherapy, radiation and regular testing is working so far and I’m in far better shape than I thought I’d be in at this time.

I did have a bone supplement (through a drip IV) and the usual Katruda (immunotherapy IV) last week and so far, every time I have done these at the same time, I get fatigued.  It is not so bad that I can’t do anything, but about all I really want to do is rest, read and sleep.  It takes me a week or so to snap out of it, which is what started to happen yesterday.  I feel pretty normal today.  I asked Dr. Inouye not to schedule them at the same time again.

Things are getting a little more back to normal, with a long stretch of time receiving so many honors like life time achievement award (from several groups), having a legal scholarship program established in my name and even having the City of Fresno (my old nemeses) declare a day in my honor – what a wild time it has been!  While I greatly appreciate all of the awards I have been given it was a little overwhelming at times.  I understand that the people and groups giving those awards were doing so out of the kindness of their hearts and for the right reasons – they were thanking me for the work I have done for social and economic justice.  I think there was some pressure to do things soon, so that I could receive these honors while I’m still alive.  Each one of these events lifted my heart and made me feel great about the community I’m a part of.  Now that things have slowed down a bit (and I’m still around), I feel a little more like a normal person and that is a good thing.  

I’m starting to think about what I’m going to do next.  I’m going to list those things here and if you have an opinion about which one you think is most important, let me know.

1. Write another book.  This would be like my How I Found Love and a Meaningful Life in Fresno story, but would be about what I know about my ancestors.  I have already done a ton of genealogy work so I already have a lot of the source material, photos etc.  I would do this primarily for my children and grandchildren so they know their family’s origin.
2. Expand the book about my life.  Honestly, I wrote and put that book together rather fast, because I did not know how long I was going to be around.  I wanted to get it done while I still could.  Doing that I left out some interesting stories.  I could go back and fill in the blanks.
3. There is a book I wrote in the mid 1970’s called Wild Edibles of Fresno County.  The book has been out of print for 40 years.  I think there would be interest if I re-published Wild Edibles.  Option one is to just do a straight re-print just changing small things.  That could be done very easily with the print on demand book printing available.  Option two would be to do a significant upgrade by taking new (color) photos, including new information about how to prepare the food and herbs and some stories about how the indigenous people in this area used them.  I think researching that last thing would be interesting.
4. Spend more time working on the Central Valley Progressive PAC to elect good candidates to local office.  I currently maintain the groups website, listserve and database.  There is always a lot to do when working on electoral politics – especially now with voter suppression being a huge issue, finding viable candidates and raising money to run campaigns that can win.
5. Then there is spending more time with family and friends.  I do have a mom that needs constant care, grandchildren I would like to spend more time with, my own children who I would like to spend more time with and of course Pam (my wife).  Pam and I have talked about taking a road trip, taking more walks and just having more free time.

None of the above are mutually exclusive.  I could do a couple of them, but I can’t do them all at the same time.  If you have an opinion about what you think I would enjoy doing most (or that you think is the most important), let me know.  

November 7, 2018

I continue to feel just fine.  I did see my primary care physician last week and she was pleased that I’m doing so well.  The only thing that we identified as being an issue is my cholesterol, which is high.  I had stopped taking the Statin meds because, fool that I am, it seemed to me that high cholesterol was not likely to do me any harm at this point.  Now, I’m not so sure.  I re-started my Statin meds today.  I don’t want to beat the cancer back and die from a stroke.

As a part of the Katruda (immunotherapy) treatment I have to do blood tests before each visit.  All of my markers are spot on, except the white blood cell count (which kills the cancer) are high.  Which is exactly what you want to see.  

I have spent the last couple of weeks learning how to place Facebook ads that benefited the Central Valley Progressive PAC candidates in the November 6 mid term election.  It is absolutely amazing how much data Facebook has on each of us.  If I wanted to target very liberal, Latina, vegetarians who have bought a new car in the last year and live in the 22nd Congressional District I could do that.  You can target your ad just to that demographic.  It is both exciting and frightening when you dig into how much data they have on every one of us and how targeted ads can influence and even manipulate us based on the information they (Facebook) and other data mining firms possess.  I’m pretty sure our ads had some impact on the election, but it is impossible to quantify.  All I know is that a greater percentage of CVPPAC endorsed candidates won on Nov 6 than ever before.

The other thing I have done in the last two weeks is read Standing in a Hard Rain, which is a yet to be published book about the life of Joel Eis.  Joel lived in Fresno in the late 60’s and early 70’s and was very involved in The Draft Resistance movement.  He tells a fascinating story about that part of our history that would have been lost, if Joel did not take the time to write about it.  I gave him feedback about some small details in the book and look forward to it getting published sometime in 2019.

I continue to walk a couple of miles a day, have been eating well, keeping pretty stress free and hope things continue like this for many more years.  Keep sending your good vibrations my way – because my life would not be the same if I did not have so many good friends and family that lift my spirits and make life worth living.

October 25, 2018

I feel great!  I have lost a little weight, which has improved my blood pressure and heart rate, I’m in no pain and I have all the energy I need to get me through the day.

I credit the radiation treatment, the immunotherapy, dietary changes, exercising and your good wishes for my state of health.  Perhaps the marijuana has played a good role – lots of people say it has an ability to kill cancer and that may be true.  Even if it does not kill cancer it does reduce the nausea and increases my appetite.  

I have been doing regular things for the past week, like working around the house, exercising, writing, going to a few events and reading a book that has not yet been published.  The book is about The Fresno Draft Resistance in the late 1960’s and early 70’s.  Joel Eis wrote the book which I’m making minor changes to, have helped Joel unite with some of the primary actors from that time and will write a blurb for the back of the book when it is published.  I’m really enjoying the read and will let you know when the book is available.

My treatment schedule is mercifully boring these days.  I go in every 3 weeks for the immunotherapy, see my oncologist every month or so and there are CAT & MRI tests about every three months.  Geez, and I thought I might be dead by now.  Instead, I feel great and it appears we are keeping the cancer from growing and in some areas (like my brain) it is not detectable.  Of course, it is still in my lung (although it is smaller than it was) and it is very possible that it could come back and kill me at any time.

Knowing that has made me much more appreciative of everything I’m able to do.  I think I was just taking life for granted until I got this diagnosis. Now I enjoy life more – maybe realizing that I was not going to live forever kick started my brain and gave me more clarity about the value of the life I live.  

Nancy Kelly, a friend of mine, died of lung cancer a couple of weeks ago.  At about the same time I heard of her death I was reading a USA Today article about a new drug treatment that Cuba has developed to cure this type of cancer.  Nancy was mentioned in the article, which talked about how the Trump administration has made it much more difficult for patients to go there to get the treatment.  In the article, Nancy talked about her difficulty in getting the drug that could have saved her life.

You can read that article here:

https://www.usatoday.com/story/news/world/2018/01/09/cuba-has-lung-cancer-vaccine-many-u-s-patients-cant-get-without-breaking-law/1019093001/?fbclid=IwAR3nYciNx_RVSEinD3QvtcqFccXIE_MOUFPeCh98ki6JDUQigtWs6gje5e0

October 10, 2018

Just a brief update to let you know that I’m still doing just fine.  Figured I should post something to let you know that not a lot has happened since the previous update.  I feel great, no pain, lots of energy and I have had no doctors visits for about two weeks now.  Life is way better than I thought it would be when I was diagnosed back in January.  

Last weekend I took my 3 1/2 year old grandson to the Big Fresno Fair.  He liked the name of the fair (Fresno is his name too), he had a great time on the rides and was so tired when we were done that I had to carry him to the car and he slept on the way home.  I’m impressed that I was able to keep up with him.

I have an immunotherapy session next week at Kaiser, but until then I’m as free as a bird.

September 25

I spoke with my primary oncologist yesterday and now have a clearer picture of what is going on.  The blood test I took yesterday showed that everything is looking good so far – in other words most everything is in the normal range – white blood cell count is an exception, but that is a good thing.  I have more white blood cells than normal.  That is because they have been encouraged to multiply and attack the cancer.

Last week I reported that the CAT and MRI tests were good, but I think I did not do a good job of explaining all of what was going on.  I still think the results were good, but perhaps not quite as good as I thought they were.  Yes, there is no identifiable cancer in my brain and for that I’m really happy.  The part I got wrong was that when they said  the cancer in my lymph nodes was stable, I thought the meant it was all gone.  That is not the case.  It is a little smaller than when they first saw it, but it is STABLE compared to the last test about 3 months ago.  Not gone.  Stable.

The cancer tumor in my lung was also stable.  Not gone, just stable.  It has not grown, it has just stayed the same.  I asked Dr. Inouye, my primary oncologist, if there was anything we could do that would be more aggressive to actually defeat the cancer.  She said that the immunotherapy drug is the best thing to do right now.  If we attacked the lung with chemo, surgery or radiation they would have to stop the immunotherapy and that could make things worse.

Diet?  More exercise?  She said that she would recommend to most people to cut down on sugar and exercise more, but I have cut way back on sugar, lost about 25 pounds and exercise regularly.  She did not think that doing more would impact the cancer.

The fact that I feel good, have no pain and plenty of energy is great.  She asked what I have been up to lately so I told her about our week long vacation in Morro Bay, going to San Francisco to pick up the Lifetime Achievement award last Friday and that Pam and I were going to the coast to celebrate our 40th wedding anniversary this coming weekend.  I told her life is great and I’m in a much better place than I would have thought, nine months ago when I got this diagnosis.

She was optimistic that there were new things in the pipeline that, if I survive long enough, will be able to do even more than the immunotherapy, which has been a life saver.  They are doing some things with Stem Cells and matching that to your individual DNA that will be a game changer.  I hope that my body either gets better and at least does not get worse and that lasts long enough so I can see how this new treatment works.

Otherwise, I’m more mindful of every day I have and it has been fantastic that I have had this much time to enjoy life, visit with friends and spend time with family.  If you have to go, and we all have to go sometime, this has been a wonderful path.  I get to enjoy my friends, family and events in the community knowing that I won’t be around forever.  In my mind that is a lot better than people saying kind words about you at a Celebration of Life event.  Just saying – I’m enjoying the process and how things have turned out.  Of course, I would love to live another 10 or 20 years, but if I died tomorrow I would die happy.

September 19, 2018

Dr. Inouye, my primary oncologist was kind enough to provide me with the results of the MRI & CAT scans last night.  That saves me some stress that I would have gone through waiting until Monday to hear the outcome of the tests.

Overall, it is good news.  There is no evidence of cancer in my brain, which was my primary concern.  The CAT scan showed no growth of the cancer in the rest of my body.  I would have liked to have seen a reduction of the size of the tumor in my lung, but that does not appear to have happened.  The bones impacted by the cancer are stable and the cancer in my lymph nodes seems to have gone away.

I will ask Dr. Inouye on Monday what more we can do to eliminate the cancer in my lung.  My thoughts – increase the dose of the immunotherapy  drug, surgery or going on a more extreme diet eliminating all sugar and doing some fasting.

Right now I feel great.  No pain, plenty of energy and enjoying each day.  But, I would feel even better if I could get rid of the cancer that has made its home in my lung.

September 17

Last week I did an MRI test that was looking at what is going on inside my head.  The hope is that nothing unusual is going on with my brain – the last test they did a few months ago showed no cancer.  That is as good of a report as you can get.  The report from last week’s test will either be the same, show some cancer that can be eliminated with a cyber knife treatment or that the cancer is back and there is not a lot that can be done.  It is a little unsettling not knowing which way it is going to go.

Tomorrow (Tuesday) I have a CAT Scan that will be revealing what is going on with the rest of my body.  The previous CAT Scan showed the cancer diminishing in the lungs and lymph nodes.  It was hard to tell what was going on with the cancer that had attached itself to some of my bones, but they were hopeful that I would be ok on that front.  Again, it is a little discomforting to wait a week to talk to my doctor about the results, but that is just the process that is in front of me.

The good news is that I still have no pain, I have a pretty high level of energy and am enjoying my life.  My family and friends have been incredibly supportive and I’m just blown away by how many groups have recognized me for the work I have done.  This Friday I’m going to San Francisco to receive a lifetime achievement award from Tenants Together and on Sunday Frente Indígena de Organizaciones Binacionales is giving me an award at their Guelaguetza (an annual cultural event held here in Fresno).  A short time after that The Kennedy Cub is presenting me with their Courage Award.

I remember when George Elfie Ballis was dying and held an ENDGAME party at Sun Mountain.  It was the first time I had been to that sort of an event, where the person being honored knew he was going to die and was able to be with all his friends before he died.  Kind of like a wake, but without the dead guy propped up on a bar stool.  It was a great event, we sang, got to say our goodbyes and everyone parted happy.  

What is happening to me is something like that, only drawn out for the last six months.  I have seen and heard from so many friends who wish me well, ask me if I need anything and show me their love that it makes me feel warm inside and satisfied with the life I have lived.

September 1

I had no medical appointments over the past two weeks, but I was more tired than usual up until a couple days ago.  I’m pretty sure my fatigue was due to the IV treatment I had on August 16.  Usually I just get one treatment per visit, but on that day they gave me a bone strengthening infusion in addition to the immunotherapy.  Either one of those will make me less energetic for a while.  Two of them at the same time kind of kicked my butt.  I feel better now and am driving to the Bay Area later today to visit with Vanessa, our older daughter, and her family.

My new book, How I Found Love and a Meaningful Life in Fresno, has been out for a couple of weeks now.  I have emailed a link to the .pdf version of the book to about 30 people who requested them.  If you would like the free version (.pdf) just let me know and I will send you a link.  The book is also available on Amazon if you would prefer the printed version.

I continue to think about my life’s story and realized that I will never be finished with updating the book.  Here is a thought about a piece of that story that I forgot to include, which I posted to my Facebook Page a couple of days ago:

It is interesting how there are important things that contributed to my development that I completely left out of My Life’s Story. One example is that in the 1970’s and into the late 80’s I had the mistaken notion that the progression of history was inevitable and that as time goes by thing will get better. In other words, over time things just keep improving. This idea might have been best expressed by Martin Luther King, when he said “Let us realize the arc of the moral universe is long, but it bends toward justice.”

That line of thinking was consistent with my world view at the time. Dialectical materialism argues that the world we live in is constantly evolving and at least in my interpretation of what Marx was getting at is that things are moving in a positive direction. The transition from Feudalism to Capitalism was in fact an advance in the social order and life improved as a result of the change. It seemed clear to me that the next step was a transition from Capitalism to Socialism that would more equitably distribute goods and services. Rather than having the vast majority of the wealth created by the working class go to the elite (what we might call the 1% today) our collective resources would be more evenly distributed.

The shift in my thinking took place as I began to understand the concept of entropy and the laws of thermodynamics that show us that chaos is always a part of the equation and that things aren’t necessarily going to get better. Obviously, I still believe in working for peace, social, economic and environmental justice and I don’t think it is inevitable that things are going to spiral out of control. But, things will only get better if we put a lot of effort into making that happen. I no longer think that social and political improvements are inevitable – I now believe that things will only get better if we can somehow convince enough people that another world is possible.

It turns out that this new realization became a primary motivating force for me to spend my entire adult life working for a world where people could earn a living wage, where health care is a human right, a world where we have clean air and water & where the homeless are helped (not tormented).

I don’t know how I forgot to mention that in my book since that was a pretty pivotal shift in my thinking. How I Found Love and a Meaningful Life in Fresno is still available on Amazon. Here is the link:

https://www.amazon.com/Found-Love-Meaningful-…/…/1724466216/

August 21

The Scholarship fundraiser at Fulton 55 was absolutely fantastic.  Great music, standing room only and good friends everywhere you turned.  My sincere thanks go out to Steve Malm and Howard Watkins who organized the event, to all of the musicians who performed and Fulton 55.  We have now raised about $14,000 of our $20,000 goal.

If you want to help us meet our goal, so we can support law students at the San Joaquin College of Law who have an interest in defending disenfranchised groups (like the homeless), who support social, economic and environmental justice, please let me know < mikerhodes@comcast.net >.

I am so glad I felt well enough to go and have a good time.  I had an IV a couple of days earlier and that tends to zap my energy for a while.  Instead of the usual immunotherapy, which is just a 1/2 hour, they combined it with a bone strengthening IV that also makes me have less energy.  Having both of those at once, a couple of days before the Fulton 55 event was challenging.

As if that was not enough, the City Council declared last Thursday Mike Rhodes Day in Fresno.  So, it has been a busy and exciting time in my life.  Fortunately, I still have no pain and side effects are minimal.  I continue to feel like things are going in the right direction and that it is very possible that I will continue to improve.  That is a little difficult for me to wrap my head around, but I’m beginning to think I will have more than just a few months to live.  That would be great.

August 10

I saw my primary oncologist today and she seems to think I’m doing pretty good.  There are no troubling signs of problems, she asked a lot of questions about my health which is good and did some poking around.  We had a nice talk, she scheduled me for a CAT scan, MRI and more immunotherapy sessions.

As long as the upcoming tests indicate that I’m getting better or at least not getting worse they will keep me on the treatments I’m currently receiving.  I asked her if there was any way to tell how long before the cancer was detected that it started.  She said that because each cancer is so different and each body is different there is no way of answering that question.

It is like the question about how long I have to live.  There are too many variables that play into the equation that it is impossible to even speculate.  The best I can do is to enjoy each day I have, take care of myself and hope things continue going in the right direction.

Just when I thought life could not get more surreal, I am being told that next Thursday, August 16 is going to be declared “Mike Rhodes Day” by the City of Fresno.  I have been invited to be at City Hall at 9 a.m. for the ceremony.  If you would like to come, I would love to have you by my side.  Plus, if they instead try to throw a net over me and drag me to their dungeon there will be witnesses (ha, ha).

Then, as if that was not enough, on Sunday, August 19 another group of friends are holding an event for me at Fulton 55.  There is a flier below with all of the details.

I look forward to seeing you soon.

August 9, 2018

The book I wrote about my life, “How I Found Love and a Meaningful Life in Fresno” is now available.  I have a .pdf version available for free (just let me know if you want me to send you the file) and a printed version is now on Amazon.  The book available on Amazon (148 pages) features lots of full color photos.  Here is the link:

https://www.amazon.com/dp/1724466216/ref=sr_1_1?s=books&ie=UTF8&qid=1533866786&sr=1-1&keywords=How+I+found+Love+and+a+Meaningful+Life+in+Fresno

I hope you enjoy reading it as much as I enjoyed writing it.  You will undoubtedly learn things about me that you never knew before – the arrests, the intrigues of politics in Fresno’s progressive movement and more.  Even my mom, wife and children learned new things about me.

But seriously, I was only planning on sharing the book with family and maybe a few friends.  I really didn’t think anyone else would be interested.  When I mentioned to friends that I was writing my life story, I was surprised by the interest so I decided to make it available to anyone who was interested.

July 26

I continue to feel well.  No pain, manageable side effects from the treatments and a relatively high energy level.  I did not think that I would feel this good when I got the diagnosis of 4th stage lung cancer in January 2018.

I had my immunotherapy session (an IV drip for about 30 minutes) today.  The mandatory blood tests before the session showed everything to be in the normal range, except my white blood cells.  That is normal and desirable for someone getting immunotherapy treatments.  It means the white blood cells are doing what they are supposed to do and are attacking the cancer.

Pam and I are going on vacation for a week.  We had reserved a cabin in Wawona, but with the Ferguson Fire still out of control our reservation was cancelled.  We got a refund for out deposit and are trying to find something on the Central Coast.  It is not easy to find something that will work for us at the last minute.

If that is my biggest worry in my life then I have nothing to complain about.  I continue to enjoy every day I have and have hope that I will survive for several more years.  Thanks for reading and I hope to see you at the Scholarship fundraiser (see the event poster below for details).

July 14

My health continues to be good and there is not a lot to report since the July 3 update.  The only significant thing that happened is that I got some of the results back from my bone scan.  My primary oncologist is off for a couple of weeks, so I was not able to talk to her about it, but she did tell me by email that overall the news from the bone scan was a pretty inconclusive.  She could not really see enough to know exactly what is going on.  She said we will do another bone scan in a couple of months and see how things look then.  Since Dr. Inouye did not seem very concerned about the results I’m certainly not going to worry about it.  If there was something obviously wrong they would follow up right away, plus I feel great.

One of the really amazing things that has happened since my diagnosis is that my friends and co-workers have been so supportive.  It goes beyond supportive – I was honored by the Community Alliance a couple of weeks ago with a lifetime achievement award and asked to be their keynote speaker at the fund raiser.  Vic Bedoian has done an oral history interview with me for KFCF which they will broadcast sometime soon.  I’m kind of shocked that anyone would be interested enough in my life to listen to an hour long interview, but hey – I’m honored that Vic did the interview and KFCF want to air it.  And, as if that wasn’t enough already – Steve Malm and Howard Watkins have set up a Scholarship Fund at the San Joaquin School of Law that will support law students who have an interest in helping disenfranchised groups like the homeless and who want to support social and economic justice.  They are calling it the Mike Rhodes Social Justice Scholarship Fund and there will be a fund raiser at Fulton 55 on Sunday August 19 that everyone is invited to.  We are trying to raise enough money to have an endowed fund which will go on forever.  We need to raise $20,000 to do that, otherwise the fund will only last for as many years as we have money in the account.

Some of you have mentioned an interest in getting a copy of the book I wrote about my life: How I found Love and a Meaningful Life in Fresno.  I really just thought I was writing this for my immediate family, but so many people said they would like a copy, I agreed to make it available to both family and friends.  The book is about 150 pages with 70 pages (photos) in full color.

So, here is the deal.  I can send you a complete copy of the book as a .pdf for free.  With that, you can read my story on your phone, computer, tablet or other digital device.  If you want to print it out you can.  If you are interested in that option, let me know and I can send you the file in a day or two.  You can text me at 559-978-4502 or email me at mikerhodes@comcast.net if you want me to send you a .pdf file.  Since it is a large file, I will send you a link to a website where you can download it at.

Option number two is that I can print out the book and mail it to you.  Because of all the color photos it is not cheap, but I have figured out a way to keep the cost and shipping down to $30 a copy.  If you would prefer a printed copy let me know and I should be able to get you a copy within a week.  The best way to order a copy is to send a check to Mike Rhodes, 4773 N Arthur Ave, Fresno Ca 93705.

I hope that I have not gone too far down the commercial rabbit hole with this update and I do look forward to seeing you at the Aug 19 fund raiser.  I also appreciate your interest in my health, sending me your good wishes and being my friend.

July 3

I had an appointment with my oncologist today.  She asked questions, examined me, went over some test results and said I was doing well.  She wants me to keep doing what I’m doing because that seems to be working.  The cancer has been significantly reduced, I don’t have any bad side effects from the medication and she is encouraged about how things are going.  She even said (and this is the first time she has said this to me – that some patients, using the immunotherapy meds can continue on that path for years).  That is the kind of report you want to get.

I have several Kaiser visits coming up this week – an immunotherapy IV on Thursday and bone scan on Friday, but I think those will be relatively easy and since everything seems to be going in the right direction I expect that trend to continue.

Otherwise I’m feeling good and enjoying each day.  I’m putting the finishing touches on My Life’s Story, which will be called “How I Found Love and a Meaningful Life in Fresno.”  The challenge is that I keep having ideas of what needs to be included and making it read more smoothly.  It seems like every time I read it over I can improve something.  I had the same issue with Dispatches from the War Zone, which is about the homeless.  At some point, you just have to say that it is good enough.  It is either that or you work on it forever.  That is not going to happen – my close family has read it, given me their suggestions, I’m adding more photos and it will be done soon.  I will let you know when.

For now, I’m feeling good, have enough energy to keep up with my 3 year old grandson (for one day a week), have no pain and as far as I can tell my mind is still functioning reasonably well.  But, if I lost my mind I’d probably be the last to know.

Thank you for reading.  It really means a lot to me that I have so many good friends and family that care enough to read this Health Blog.

June 26

The results of the CAT scan I took this morning are back.This is the first time we have done a CAT scan of my body for several months.  I did an MRI of my brain last week and that showed significant improvement.

The CAT scan results are going in the same direction as the MRI – my situation seems to be getting better.  Here are a couple of the findings:

lymph node now measuring 13 x 14 mm, previously 15 x 17 mm.

LUNGS: Irregular right upper lobe mass is decreased in size now measuring 2.5 x 2.4 cm, previously 3.4 x 2.4 cm. A few 3 mm previously seen nodules in the right lower lobe are not seen on current exam. Prior 3 mm left upper lobe nodule is no longer seen.

I have a meeting with Dr. Inouye, my Oncologist, next Monday and I should know more then.  I think it is likely that they will keep me doing what I’m doing, since that seems to be working.

To say I’m relieved by the CAT and MRI test results is a huge understatement.  I’m glad I got the results back so soon, because what they revel is literally of a life and death nature and thinking I would have to wait until Monday (when I have an appointment with dr. Inouye) would have stressed me out a little.

June 20

I continue to feel well, am in no pain and have enough energy to get me through the day.  After I posted the June 12 update on this Health Blog I talked to my radiation doctor.  He is the one who supervised the full brain radiation.  He was a little more cautious about how to read the MRI.  Dr. Tan said that while the cancer in my brain has been diminished to the point where the scan does not see it, that the cancer is probably still there.  If it starts to grow I would probably be sent to South San Francisco Kaiser where they would use, what the call, a Cyber Knife to use radiation that targets any re-emerging cancer.  He said that happens in about 3 out of 10 patients that have gone through full brain radiation treatment.

I asked Dr. Tan why they did not use enough radiation to kill all of the cancer.  He said they could have done that, but with that amount of radiation I would be dead.  So, the report from the MRI was as good as I could ever have expected, but we will have to monitor developments for months (probably years, if I’m lucky) to see what does or does not develop.

I want to make sure as many of my friends as possible are able to attend the Community Alliance newspaper event this Friday.  I’m the keynote speaker and I would be honored if you would attend.  I will post a flier about the event with this update.

 

June 12

The results from today’s MRI brain scan are back.  The cancer that was in my brain in January is gone.  That is extremely good news.  A couple of months ago my doctors were far from certain that we would eliminate all of the cancer in my brain with the radiation.  I was told the immunotherapy is not capable of penetrating the barrier that protects the brain.  So, the fact that the radiation was successful is a really big deal.  I feel like a HUGE weight has been lifted from my shoulders.

I have a CAT scan at the end of this month and we will know by early July if the Katruda (immunotherapy) is having a positive impact on the lung cancer and the other places it has spread to – like the lymph nodes and bones.

Even though the MRI report is extremely good news it does not mean that I’m out of the woods yet.  But, it is a big step in the right direction.  And, since I feel so well, have no pain, no serious side effects from the drugs and I have lots of energy, I’m starting to hope that I might beat this thing.

Don’t stop your prayers, positive energy sent my way or any of the other things you are doing because that might be what is really working.  I really appreciate your support and I feel the love.  

June 9

I’m pleased to report that I continue to do well, have no pain and am looking forward to whatever lies ahead.  Since I have been feeling good I have spent a lot of my time working on a short book about my life.  I have really enjoyed the process, looking through photos to include that will illustrate the story and and having the time to reflect back on my life.  I’m pretty sure I would not have done this unless I had been told I only have a limited time to live.  There are always so many things that have to be done right away that I don’t think I would have made time for a project like this without a nudge from something that could not be ignored.

When my friend George “Elfie” Ballis knew he was going to die he held an “Endgame” party that I attended.  I remember thinking that the event was way better than the funeral or celebration of life events that usually happen after someone passes away.  A hundred so of his friends gathered and we sang, laughed and shared stories of his life.  I recorded the event and produced a radio show in honor of Elfie’s life which was broadcast on KPFA and KFCF.

I’m honored that as I face my own Endgame, that my friends and family have shared their love, given me prayers, warm thoughts, dietary supplements and so much more.  I’m blessed to know you all.

In addition to the book on my life that I’m working on, a couple of other things have happened that suggest some of what I have done in my life will live on.  The first is that the Community Alliance newspaper has set up a Mike Rhodes Writer’s Award that will be given out annually to someone in the community that has made a significant contribution to local journalism.  I will give the first Award to Richard Stone, a long time writer for the Community Alliance newspaper.  Hidden in Plain Sight is a book Richard put together from the articles he wrote about grassroots activists in Fresno who are working for peace, social and economic Justice.  The event where I will present this award will be on June 22.  It would be great to see you there – details can be found on the Community Alliance website or in the current issue of the paper.

The second thing that blew me away is that Steve Malm and Howard Watkins have set up a Scholarship in my honor at the San Joaquin Collage of Law to help law students who have an interest in helping the oppressed (like the homeless) and believe in using the law to promote social and economic justice.  We are hopeful that this will be an ongoing scholarship funded by an endowed trust that will give $1,000 a year to a deserving student.

As mentioned in an earlier post, Vic Bedoian is also planning on doing an oral history interview with me that will be broadcast on KFCF.  

Next week and the week after I have lots of things going on at Kaiser (immunotherapy, blood tests, an MRI, a CAT scan etc) that will clarify if what we are doing is working or not.  My gut feeling is that it is working and that is why I feel as good as I do.  But, until they take a peek under the hood, that is just speculation.  I will let you know the good (or bad) news I get, which will be by the end of this month.

May 31

The good news is that I feel good, have lots of energy and am feeling optimistic about my future (whatever that may bring).  The bad news – there really isn’t any.  

I have spent the last week or so writing my life’s story, picking out photos to illustrate the book and have made some changes based on Pam’s first reading of it.  I expect Vanessa and Simone (our daughters) to read the book and give me feedback within the next week.  

It has been great to have the time and energy to reflect back on my life and tell the story of what I consider to be a meaningful, mindful and enjoyable life.  If anyone reading this Health Blog is interested in reading what I have to say, I think I will be able to make it available in a couple of weeks.  Watch this space for details.

I have no medical appointments for a couple of weeks (which makes me very happy) and then it will be for a CAT scan and MRI so we can see what is going on inside my body.  I’m hopeful that it will be good news, and think that will be the case, in part because I feel so well.  But, who knows what they will find.  I will let you know.

I’m looking forward to seeing Vanessa (our older daughter) who will be in town on Friday and Saturday.  And last, but certainly not least, I was absolutely thrilled to read the comment (below) from Ellen Bulf.  I love all of the comments and appreciate them more than you know, but the one from Ellen reminded me of a very happy time in my life and I thank you Ellen for remembering that and sharing it on my Health Blog.

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May 24

This is a photo of me at Kaiser this morning getting an IV of Katruda, which is the immunotherapy drug they are giving me.  It is an interesting scene in the infusion center on the 3rd floor – there are rows of us there getting chemotherapy, some people are there for hours.  Fortunately, my treatment only takes 30 minutes.  

I’m feeling surprisingly well these days.  Other than some minor constipation, occasional fatigue and nausea, I feel pretty good.  I have been spending a lot of time working on my life story.  If I keep at it, I should have something completed in a week or two.  I’m also looking forward to doing an oral history interview at KFCF.

It might seem a little odd saying this, but I feel very fortunate to basically feel good and have time to reflect back on my life.  Even if I die in the next six months or so (which was the original prognosis), I would be OK with that.  But, it is possible that the treatment I’m on will be successful and I could live for several more years.  Wouldn’t that be cool?  I certainly think so! 

May 19

I have made an adjustment to my diet, which has been a lot of fruits, vegetables and nuts for the last couple of months. I have made the change because I have been loosing some serious weight (I’m now 175) and my blood pressure seems to have dropped significantly, leaving me dizzy when I stand up. I don’t think the diet I was on was sustainable or at least that is how I see it.

It is not that I’m heading down to Dunkin Donuts or something like that. More like – two days ago I had a plate of Scarface from Diccicos. Last night I had Pork Bulgogi from Rock and Noodles. Yum!

I had a bone strengthening drug (by IV) yesterday at Kaiser. The side effects of that are unpleasant, but I need to do what I can to stabilize my bones after they were attacked by the cancer. Next week I have another immunotherapy session (also done by an IV drip) and a meeting with Dr. Inouye, my primary oncologist.

As far as I know, the next really big event will be a CAT scan of my body that will indicate if the immunotherapy drug (Katruda) is having a positive impact on the cancer. I don’t have that scheduled yet, but I think it will be in the next month or so. I have to say that I do like it when they schedule something 2 or 3 months out. I’m like “Oh, that’s good. They think I will still be around in August. That’s great!”

Being told that you only have a short time to live does change your thinking patterns. At least for me, that is not a bad thing. It has been a great opportunity to think back on my life and appreciate my good fortune. I have really enjoyed writing about my life’s story and feel blessed that I will be able to share that with family and friends.

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May 11

The good news is – I have more energy and less nausea than I did last week (see my last blog post). The not so good news is that in addition to the other side effects I had constipation. That was new to me. I have never had that problem before and am glad that is over. I will spare you the details.

I had a call last night from a friend and fellow journalist. He wants to do an oral history of my life. It fits pretty well with what I’m doing already – I have been writing my life story, mostly to share with my family. But, several people have said they would like to read what I have written, so I’m thinking about creating a public version. I have already written about 15,000 words and have gone from the senior year of high school to about 1990. There is a lot more to say, but if I keep going like I am, it’s going to be a book. Obviously my friend will have to narrow the scope of the project to keep the oral history to a manageable length. What to leave in? What to take out? That is the job of a good journalist, to know what to include.

While writing my life story I often think of how interesting it would have been if my grandparents had done something like that. I wish I had had the presence of mind to have asked critical questions when they were alive. I did do that with my mom after she fell and broke her hip. It was amazing how that after doing that, I have a whole new understanding of what her life was like. Just a little food for thought: If you have someone in your life that is important to you, you might want to take the time (while they are still around) to drill a little deeper into their lives to find out what is important to them and what they did in their lives (that you probably don’t know about). The result of the interviews with my mom was a photo book (through Apple) of her entire life, featuring the photos that were most important to her. I also made three videos of her talking about her life, while looking at the photos we put in the book. A bonus was uncovering some very old 8 mm video that her dad shot in the early 1960’s. There is a scene in the videos where you can see me doing the TWIST when I was 11 or 12 years old. Classic stuff!

Back to my health for a minute – I have no doctor appointments this week and next week I just have a blood test and immunotherapy session. Eventually, they will do another CAT scan or MRI and see if we are successfully beating back the cancer. I am hopeful and cautiously optimistic that I will have positive news to report to you after those tests.

If you want to comment on this blog, you can do so by scrolling all the way to the bottom of this blog (and past all of the other great comments), where you will see a space that looks like this:

 

May 5

I saw my neurosurgeon yesterday regarding the damage to my vertebrate from the cancer. I had taken a CAT scan on Tuesday so they could see what the radiation had done – there was a concern that the bone was so badly damaged that I would need surgery. They had me wearing a neck brace and were checking on my progress for the last 4 months. I will admit I was concerned that things were so bad that either I would loose control of some motor function in the arms or fingers. To my surprise, the doctor said that while it does not look pretty (he described the vertebra as flattening out like a pancake), but that it looks stable and may have fussed to another bone. He did not recommend surgery and has no plans to see me again, unless things get worse. I consider that great news. He also said I don’t have to wear the neck brace any longer.

On the other hand, I have gotten really tired, have nausea and a few other symptoms that are common side effects of the immunotherapy. I have decided to listen to my body, get lots of rest and take medicine that will limit the nausea. That seems to be working. If you know me, you know that I like to be getting things done, so relaxing is not my first choice of what I would like to be doing day after day. Some reading and naps is fine. But, it is challenging to do it all of the time.

I’m particularly disappointed that I had to stay home and not attend Amelia’s birthday. Amelia is our granddaughter. Our daughter Vanessa and her husband Anool just bought a new house in Hayward and they are moving in today. I would have loved to have gone, but had to make the call that I’d be more comfortable at home.

And, I realize how lucky I am to have the ability to have a comfortable place to relax when I need to. Given all of the work I have done with the homeless, I can’t help but thinking what it would be like to be ill and have no place where you can be comfortable. So, even thought I don’t feel great at the moment, I’m thankful for what I have. Plus, I’m hopeful that if I can rest, eat well and take the anti-nausea meds that this won’t last forever. I suppose I shouldn’t be too surprised that a diagnosis of 4th stage lung cancer is going to make you feel a little uncomfortable for a while. Still, I’m looking forward to getting my energy back and not being nauseous all the time.

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Thursday, May 3

I did a blood test on Tuesday and the results show that almost everything is normal. Not surprisingly my white blood count was up, indicating that there is a war raging inside my body to attack the cancer cells. That is a good thing. I also did a CAT scan on Tuesday that will show how my spine is holding up. You may recall that one of the areas most affected by the cancer was some of the bones on my spine and hip. So, I will meet with the neurosurgeon on Friday to see how things are going. Since I am having a little discomfort in my neck, it will be interesting to find out what is going on.

I also have been feeling a little less energetic for the last week and have a little nausea. I have started taking the nausea pills they prescribed and that is helping. These are two well known side effects of the treatment I have been receiving.

It would be nice if I could report steady progress and how things are always getting better, but this is not going to be like that. There will be ups and downs. I’m hopeful that things will improve, but I realize that the outcome is pretty much just a roll of the cosmic dice. Either the radiation, drug treatments and diet changes will eliminate the cancer or it won’t. There is some comfort in just doing the best you can and realizing that some things are out of your control.

I have a Pembrolizumab (immunotherapy) session later today and will be seeing the neurosurgeon on Friday. After that, Pam and I will be going to the Bay Area for Amelia’s first birthday. Amelia is Vanessa and Anool’s daughter (our granddaughter). Next week, unless something comes up, I have no doctor visits.

I have been asked to speak at the Community Alliance newspaper fundraiser on June 22 (Save that Date). They have set up a “Mike Rhodes Writers Award” which I will be presenting. It would be great if you could attend this event, since I’m not getting out very much (otherwise) these days. It would be good to see you there.

In fact, it always lifts my spirits to see friends, have comments to this blog and to know you are sending positive thoughts my way.

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Tuesday, April 24

This is the first week in a very long time when I don’t have a doctor’s appointment. Next week I get a CAT scan to see what is going on with the bones affected by the cancer. The doctors are particularly watching my neck, because the cancer did some significant damage to a vertebrate in my neck. I think the worse case scenario is that they would do surgery to provide support. Apparently the cancer dug into the bone and when we used radiation to kill it I was left with a whole lot less bone than I started out with.

Next week I also have blood tests, will get more Keytruda (the immunotherapy drug) and a visit with my neurosurgeon. So far, the progression of treatment seems like things are all going in the right direction. I understand that at any time things can go to hell and that thought is always in the back of my mind. It is wonderful that I feel great now, that I have not had a bad reaction to treatments and we seem to be pushing back on the cancer (even having some remission of cancer cells and killing it completely in other places). But, the possibility that all of that could end and my death could be around the corner is constantly in my mind.

While that sounds like it would be awful, it is really not that bad. I’m extremely happy for every day I have, I’m able to do anything I want and am satisfied with what I have done in my life. I look forward to going up to the Bay Area the weekend after next and celebrating my granddaughter’s first birthday. I get to spend time with my grandson every week and appreciate the great relationship I have with Pam, more than ever. Probably, if I did not have cancer, I would not be as “in the moment” as I am and would not be as aware of how good my life is.

When someone has a near death experience they often times have a new perspective on things. Well, this experience for me, has been a slow motion version of a near death experience. With the added bonus that I feel great and have time to enjoy each day, wrap up any old business and think back on what a great life I have had.

Plus, at this point, it is entirely possible that I will continue to have a good quality of life for several years to come. I could beat the cancer.

That is all for now. I’m going to continue listening to Bob Marley and writing my life story, which I hope my kids and grandchildren will enjoy reading.

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Tuesday, April 17

The Fresno Bee printed an article about the immunotherapy drug I’m taking.  See: Immune Therapy Benefits Lung Cancer Patients . I feel fortunate to have this treatment available, which I started about a month ago. I’m not sure if it is the Keytruda, but I’m pain free and feel just fine at this time. I have a meeting with my primary Oncologist later this week to get a progress report on my health.

There is a longer version of this article available at the NY Times.  Here is a link to the full story:  NY Times article

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Wednesday, April 11, 2018

I’m feeling pretty good today, which I feel grateful for, but in the back of my mind I worry this could be the calm before the storm. Or. . . not. Given the diagnosis (4th Stage Liver Cancer) I did not expect to feel like this three months ago. I was definitely prepared for the worst and did all of the things you might expect one to do when they think they are going to die soon. I got myself mentally prepared, I got my affairs in order (financial, will etc) and scheduled treatment at Kaiser.

Kaiser, by the way, has been great. Even though they said I would not live long (maybe a year) that did not stop them from aggressively treating the cancer. They really spared no expense with exams (blood, CAT, x-ray, MRI etc), radiation and immunotherapy.

In addition to Kaiser, I have gotten a ton of advice from friends and doctors. The result of those discussions have led me to take numerous supplements (to boost my immune system, strengthen my bones that were damaged by the cancer and to provide other nutrients that are thought to be good for my condition). I have also made significant changes in what I eat.

I’m now eating mostly vegetables and fruit and some meat. I have eliminated, as much as possible sugar and starch. I have also stopped drinking beer, wine and other alcohol. Not that I drank that much before, but I’m convinced that no harm will come from stopping completely and it might even help.

The result of all these treatments, supplements and dietary changes? Yesterday I did a blood test in preparation for the second immunotherapy treatment and the results were impressive. My glucose levels have dramatically improved and just about everything is within the normal range. The one or two areas where they are not normal are not significant.

The blood test results and the CAT scan results (from last week) tell me that things are moving in the right direction. I’m totally prepared if something changes, but all indications are that I have not only stabilized but am showing some improvement. The radiation, immunotherapy, supplements and eating changes appear to be working. I will probably never know which of these things was most important in improving my health, but I will assume that they all had a role to play.

If I have any regrets, it is that I did not change my diet years ago. It is not that hard to live without sugar, starch and alcohol & eating more vegetables and fruit. If that would have kept me cancer free, it would have been worth it. 20/20 hindsight is not going to help me now, but it could help you.

I know. . .there are a lot of factors that play into getting cancer and that diet is just one of them. But, it is one of the things we can control. We should also fight for better air quality, more regulations of carcinogenic chemicals and mitigate other environmental risks. It also would not hurt to know about the role genetics plays into getting cancer and to get regularly tested if you have a hereditary pre-disposition to a particular type of cancer.

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Wednesday, April 4

I received the results of the CAT scan I took on Monday. What seemed significant to me was that the cancer does not appear to have spread to any new places, the existing tumors do not seem to have gotten larger and that things have more or less stabilized. Before getting the CAT scan my Oncologist said to not worry if things actually looked worse from the January CAT scan, because we have just started the immunotherapy and the radiation was targeting very specific areas. The fact that things looked no worse is encouraging to me.

It has been about a week since I had a consultation with Sue Stone, who is a Holistic doctor. She made some recommendations for supplements that might be useful and thought it would be a good idea for me to eat less sugar and meat, replacing that with more fresh vegetables and fruit. I have been following her advice, because it makes sense to me. Since cancer cells use sugar and glucose for fuel I can’t see how eating less sugar can hurt.

Then, yesterday, I had a visit from another doctor who took the importance of eating certain foods to a whole new level. He is convinced that eating a diet high in vegetables and that includes some fruit and meat will starve the cancer. If you are familiar with the South Beach Diet, that is pretty much what he is talking about. The idea is to fast for four days and then switch to the new diet, which will allow your body to absorb the energy you need, without feeding the cancer the sugar it needs to survive.

I have not heard anyone say that eating more processed sugar and starch is a strategy for fighting the cancer, but I have now had several people who I know and trust suggest that if I change my diet it can be beneficial and could play a role in my recovery.

At this point, I have decided to definitely eat less sugar and starch, I’m going to do more research on the South Beach Diet and am considering fasting for a few days to jump start the process of switching to this new way to fuel my body.

In addition to doing research on how a better diet might impact my cancer treatment, I have been doing a lot of writing this week. You may have heard someone say that before you die, your whole life flashes before your eyes. Well, I’m doing a slow motion version of that phenomena, by writing about my life. I’m doing this because I enjoy writing and I want to leave my children and grandchildren something so they can better understand me.

The process of writing about my life has been more enjoyable than I could have imagined and so far, the sections I have sent to Vanessa and Simone, have been well received. I printed out the entire rough draft (still a work in progress) for Pam to read and she (the person who probably knows me better than anyone else in the world) said she learned a new thing or two about me.

For now, I feel well physically, I’m starting to eat better, my mind is still sharp and I feel optimistic and positive about my future. And, for the first time in a long time, I don’t have another doctor appointment for about a week.

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Friday, March 30

Yesterday I had the good fortune to have a consultation with a holistic doctor, outside of the Kaiser system. Kaiser is really good at the more traditional treatment of cancer, radiation, chemotherapy, CAT scans, MRI’s etc. But, they do not give much in the way of advice to what you should eat, not eat, what supplements you should take etc. I feel that is a significant gap in Kaiser’s approach, because there are other factors that impact the treatment of this diagnosis – for example eating less (or no) sugar, eating more fruits and vegetables, less meat, certain herbal and vitamin supplements, exercise, a positive attitude etc. I really appreciate that this local doctor reached out to me and generously gave me her time to give me her good advice.

Yesterday evening, another doctor called me (out of the blue) and scheduled a time for us to get together. He said he has something to share with me that can be useful. I’m so grateful for all of my friends and family that have offered their advice, who send prayers and positive energy – and that we live in a community where doctors will reach out to offer their expertise and knowledge.

I had one other thing happen to me recently that just really lifted my spirits. You might remember that when I started this blog I encouraged everyone reading it to subscribe to the Community Alliance newspaper and to join the Central Valley Progressive PAC as a way to support and continue the work I have done. A couple of days latter I mentioned a book: The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter, by Margareta Magnusson. Well, what made my day is a friend of mind told me she got the book and is selling the things she no longer needs and with what she earns from that is subscribing to the Community Alliance and joining the CVPPAC. Seriously! How cool is that? Cool enough to make my day!!!

***

Wednesday, March 28

I have just returned from a visit with my neurosurgeon at Kaiser, following the x-ray of the spine I did yesterday. We are monitoring a disk on my upper spine (in the neck area) that was hit pretty hard with the cancer. The good news is that the radiation treatments beat back the cancer and the pain is gone, although I do still have some tingling in my left neck and shoulder area. The bad news is that the cancer pretty much destroyed the bone and my neurosurgeon says that it does not look good. We will do a CAT scan or MRI in a month or so to take a closer look.

The neurosurgeon is not recommending surgery at this time, but that could change if conditions worsen. Symptoms I need to look out for include loss of strength or control in my arms, legs, toes or fingers. This issue seems to be high on the list of my doctors concerns. The other one is the brain, which is really hard to treat. The hope is that the full brain radiation eliminated the cancer, but we don’t know if that is the case yet, or not.

I have been advised (again) to wear the neck brace as much as possible to strengthen the bone in my neck that I’m having problems with. I will wear it as much as I can, but it is not all that comfortable. And, I’m really not feeling any pain in my neck (things just seem to be getting better), so my motivation for wearing it is not high. But, I do want to do what I can to not have to have surgery.

The only other thing that is affecting me is the reaction I’m having to the full brain radiation. My hair falling out is not that big of a deal, but the top of my head looks sunburned, is cracking and peeling which feels like my head is on fire most of the time. Yesterday, the irritation ended up closing the passageway in my ear canal. It felt really weird until I was able to flush it out with some warm water.

Other than that I feel pretty normal. My neurosurgeon said I look fine and seem to be doing well and that is really important. I agree. But, I can’t help but think that at any moment everything could go to hell in a hand basket. A lot of what happens, it seems to me, is out of my control. Sure, I’m aggressively treating the cancer, eating well, taking supplements and doing as much exercise as possible and it is still entirely possible that tomorrow or the next day the bone in my spine will collapse and I could be paralyzed. Or, on the other hand, the radiation will have worked, the immunotherapy will do its thing and kill the remaining cancer. I have hope that I will beat this thing, but there is still a lot of uncertainty at this time. Staying positive, following through on the treatments and making the most of every day is the best I can do. The rest is out of my control.

***

Photo exhibit A

This is the mask I used during the full brain radiation treatments. The staff at the Fresno Cancer Center would put this mask on each time I came in, fit it onto my face and then attach it to the table. They seriously did not want me to move during the treatments.

When they made the mask, they put this very warm (almost hot) piece of plastic on my face and let it mold around my head. I should have got a photo of the huge radiation machine with me attached to the table. I think it must looked like something out of a Frankenstein movie. But, you know, the people that work at the Fresno Cancer Center are super nice. They were always joking around and upbeat. Their attitude really made going there each day easy to do.

***

Friday, March 23 (part 2)

I’m back from the meeting with Dr. Inouye who is my primary oncology doctor. I am very optimistic, from talking with her, that we are doing the right thing to treat the cancer and that I’m tolerating the radiation and immunotherapy well. I’m more hopeful than ever that I have a fighting chance and that I might be around for a while.

At first, I was just excited that they (my doctors) were scheduling meetings for me a month or two in advance. Now, I think it is possible that I might live for a couple of more years, and that makes me very happy.

On the down side, something I was totally prepared for, started today. My hair is starting to fall out. All of my doctors said that would happen and it is in fact falling out now. So, probably the next time you see me, I won’t have a hair on my head.

***

Friday, March 23

This has been a busy week with medical appointments each day. Monday and Tuesday I had full brain radiation. Monday included a consultation with my radiation therapist. He seemed to think I was doing pretty good, but reminded me that I should still expect all of my hair to fall out and that the top of my head will look sunburn and probably crack and peel. Tuesday, in addition to the radiation, I had to take a blood test in preparation for my immunotherapy on Thursday. I ended up having to do two blood draws, because one of the tests required fasting. On Thursday I was back to Kaiser for my first Pembrolizumab (immunotherapy) session. That went pretty well. They deliver that drug by an IV drip, which takes about 30 minutes. Today (Friday) I have a consultation with my oncologist, Dr. Inouye.

The biggest effect I have had from these treatments is some fatigue. I just don’t have as much energy as I used to have. The doctors tell me that this happens to just about everyone undergoing radiation and immunotherapy. So, by and large, I still feel pretty good and I’m in no real pain.

I am still trying to get a handle on all of the alternative therapy advice I’m getting. A small sample of what has been suggested:

• Eat massive amounts of Cottage Cheese with flax seed.
• Do not eat anything with sugar.
• Eat a pound of asparagus a day.
  Go to Mexico and or Brazil, because they have meds that are not available in the U.S.
• The number of people recommending marijuana is pretty impressive. I have been given this product in forms that I never new existed.

And this is just a small sample of what people have recommended. It is obvious that I can’t do everything, so I have asked people to give me some scientific evidence that the alternative med will be helpful. With that suggestion I was sent a very technical paper about how a drug will kill brain cancer. I was unable to evaluate the information so I passed it on to my oncologist. She said it was addressing a type of cancer that I don’t have. I’m going to consult with a local doctor that focuses on holistic and alternative treatments to try and get some perspective on what might help me.

Pam has gone back to work full time. I get it. I seem pretty normal/healthy and don’t need her to be here all of the time to take care of me. Plus, she has a job that she enjoys doing, it is meaningful work and it probably takes her mind off of what is going on with me. I totally support her decision to go back to work full time, but if my health starts to decline I know she will cut back on her work to be by my side.

Given my fatigue and all of the medical appointments I have, my schedule has been dramatically altered. One enjoyable thing I have more time for is reading. I just finished reading Russian Roulette, the new book by Michael Isikoff and David Corn. This book lays out the connection between the Russians and the Trump campaign & administration and has convinced me that when the full story is revealed, the significance and ramifications of what happened will make Watergate seem like a minor transgression by comparison. I also watch Rachel Maddow almost every night and she follows this story better than anyone else.

I did go to the Central Valley Progressive PAC meeting last weekend. This was the CVPPAC endorsement meeting and was well attended. I have been avoiding crowds, so seeing so many people at one time was different from what I’m used to. Everyone was very friendly and I enjoyed visiting, but was tired after that 3 hour meeting.

I’m pleased to report that my mom (Vie) is doing better and is enjoying herself at the Residential Care Facility where she is at. She had some anxiety about being left alone, but she seems much better now and I’m really thankful for that. Vanessa (our daughter) and her family are coming for a visit this weekend and I’m looking forward to that.

***

Monday, March 19

On Tuesday I have my last day of full brain radiation, which is OK with me. My head feels like it has been sunburned for a week and I have a few other minor complaints. But, overall I still feel pretty good and continue doing what I normally do, plus walk a couple of miles a day. My doctor at radiation told me today that the treatment I had is effective in about 7 out of 10 cases. If tumors in my brain are not eliminated, I will need to have that taken care of by the Cyber Knife in the Bay Area.

I have to say that being in my position does change the way I look at life. Three months ago I thought I had all of the time in the world to do the things I wanted to do. Fortunately I feel like I lived life well and was able to accomplish what was most important to me. I absolutely love my family, I did incredibly meaningful work (both socially and politically), traveled the world and am satisfied with what I have accomplished.

So, when I realized that I might have less than a year to live, I gave some thought to what I wanted to do with what time I had left. Obviously, there are loose ends to clean up – like cleaning all of my junk out of the garage so some other poor soul doesn’t have to do that, making sure your financial situation is in order, you update your will and things like that.

But then you think about what you are going to do with the time you have left. Some people make a bucket list. I find myself mostly doing what I always do. Life is made up of so many moments that we all just take for granted. In my case, getting up in the morning, making a pot of coffee and reading the paper. There are other regular things that I do that are enjoyable, like going for a daily walk, visiting my mom (who recently moved into a Residential Care Facility), watching and playing with my grandson, reading a book etc. I have decided that I really like my life and other than the doctor appointments, really haven’t changed a thing.

Ask yourself this – if you thought you had less than a year to live, what would you do differently? If you find that your answer is significantly different than what you are doing right now, you might want to give that some thought. For myself, I feel very fortunate to be where I’m at in my life. Of course, I have a lot to live for and hope I survive this medical challenge. That said, there is not a whole lot I would want to change about my life.

Just one last thought for now: I have received an impressive number of messages, cards and letters from friends (from all over the country and the world) that wish me well and talk about how I have impacted their lives, that it has really made me feel better and made me more positive about my life. I have always believed that the good work we do when working for peace, social and economic justice radiates out and effects people in ways we will probably never know about. Maybe they are inspired to work on or create a project that helps make this a better world. Several people have told me how my support for the homeless, working for Free Speech or for helping get progressives elected to local office has inspired them to be more active. I can think of no better legacy for me than to have nudged history forward by inspiring people in the direction of working for peace, social and economic justice.

If that is true, then a small part of me will continue to exist, even after I’m gone.

***

Tuesday, March 13

I appreciate how many friends I have who care enough to suggest alternative therapies for my cancer diagnosis. I have been encouraged to eat as much cottage cheese and flaxseed as I can stand. Of course, 1/2 of my friends say marijuana will cure cancer. I have been given cookies, herb, pills, tincture, gummy bears and raw leaves for juicing. Eating asparagus apparently is another way to cure cancer. I have been encouraged to go to Brazil and Mexico for treatments that are not available here. And, of course I have been given lots of (vitamin and herbal) supplements that will help.

I do appreciate how my friends will share ideas about what can help cure me of cancer. I know that traditional medicine does not have all of the answers and that sometimes people overcome cancer for inexplicable reasons. And I understand that everyone is trying to be helpful and have the best of intentions when they recommend alternative therapies. If I thought I could cure my cancer by eating a pound of asparagus every night, I would absolutely do it.

Here is what I would like to suggest. If you have an alternative you would like to recommend, please give me something that will quantify why/how that therapy will work. It is not enough to cite a couple of testimonials. Yes, it is interesting to read how this or that product saved someones life, but that is just antidotal information. It doesn’t prove anything. What would really help is to see a scientific study that is peer reviewed that shows that this or that product works for this or that form of cancer.

There is only so much cottage cheese & flaxseed, marijuana leaf smoothies and asparagus I can eat day after day. I need to be convinced that what I’m doing has a better than average chance of working. Maybe it is the investigative journalist in me, but I’m always looking for the truth and digging deep to find out what is really going on. I like the scientific process. That is why I’m doing the radiation treatments and will go on to immunotherapy next week. Because, those things have been tested and proved effective. Yeah, I will probably continue using pot, eating asparagus and taking vitamin supplements, even if I’m not totally convinced they will cure my cancer. What is the worst than can happen?

It is a little odd that I continue to feel as well as I do, given the diagnosis I received. If I hadn’t seen the x-rays and talked to the doctors I might question if I really have cancer or not. But, yeah. . . it is there. My hope is that we will beat it back with the radiation and then eliminate all or most of it with the immunotherapy. We are a long way from that goal right now, but I do believe that is a possible outcome. If that does not happen and I end up dying sometime soon, then I’m prepared for that outcome too.

But, just for the record, there are a lot of things I would like to do. Some of them simple, like walking on the beach or having a glass of wine with Pam. Some things I would like to do are a little more complex – like writing another book, being a part of my grandchildren’s lives or changing the world.

***

Friday, March 9

I have now completed 3 of 10 full brain radiation treatments. I have to say that I went into the treatments with some concern about the side effects – primarily the possibility of significant cognitive decline. So far, I’m doing great. Other than feeling that the top of my head is too hot (sort of like if you had been out in the sun too long), I have no other side effects. I expect whatever hair I have left (on my head) to fall out, but that is just a minor inconvenience.

Since the diagnosis I have made an effort to eliminate unnecessary stress and work from my life. I mentioned in a previous post about clearing out the clutter that has accumulated in our garage and house. I have to say that doing that work has been rewarding and I would encourage all of my friends to consider taking on that task. You probably don’t need all of that junk and it is liberating to get rid of it. I’m also fortunate to have a lot of friends who have showered me with love and kindness. Just this week I’ve had friends bring me alternative meds, food, flowers, send me get well cards (some with tickets to go to fun places), mow our lawn and take Pam and I out to dinner. I really feel blessed to have such good friends and community. I feel very appreciated and loved. Thank you all for that!

I might have said this before, but I will say it again. I feel like I have lived a wonderful life and while I would love to live longer to continue enjoying what life has to offer, I feel completely satisfied with the life I have had. There was a time in the early 1990’s when I feared I might die – doctors found a tumor in my lung. It turned out to be benign. If I had died then, I would have felt cheated of watching our kids grow up, get married and have children. Not to mention all of the fun I had traveling all over the world, being editor of the Community Alliance newspaper and being deeply and meaningfully involved in the fabric of this community. If I had died in the early 1990’s I would have felt differently about things than I do now. Like I said, my strong preference is to live for many more years, but if things in the universe align in such a way that I end up dying, I would accept that as gracefully as possible. Just know that I have lived a great life (far beyond my expectations), feel fulfilled and that I have lived a life that matters. Who could ask for more?

Right now, I feel great. I’m not in any pain, I have plenty of energy and my mind is still sharp. So, I have hope for the future and will enjoy every day I have left.

***

Tuesday, March 6

I continue to feel pretty good. The only thing that does not feel normal is my neck, but even that feels much better than it did a couple of weeks ago. I’m back to sleeping in a bed – I had been sleeping in a lounge chair that gently lifted me up from a lying position. The pain in my neck was so bad I was almost unable to get myself up after lying in a regular bed. That problem seems to have been eliminated through the radiation treatments to my hip and spine.

If all goes well with the full brain radiation that starts tomorrow (Wednesday, March 7) I will then start with immunotherapy which I’m told will encourage my immune system to directly attack the cancer. I feel hopeful that I can see a pathway to how the treatments will beat back the cancer. At best, the combination of approaches will give me a few more years of life. On the other hand, there is a lot that could go wrong. For now, I’m staying focused on the positive – the radiation has stopped the pain in my neck, I feel pretty darn good and there is a possibility of success in the treatments I’m engaged with.

In addition to the traditional treatments (radiation, immunotherapy and chemotherapy) a lot of my friends have encouraged me to try alternative paths to defeating the cancer. Nobody has exactly said that I should turn my back on Kaiser, but there is a lot of strong feelings about trying other approaches. The one I hear about the most is using cannabis. I have been given marijuana cookies, pills, liquid and of course herb to smoke. The things a person will do to stop from dying of cancer! I have tried them all and I’m not sure if it is curing my cancer, but I’m sure in less pain. Was it the pot or the radiation? We may never know so I think I will continue with both approaches. Today I had a dear friend bring me fresh green marijuana leaves. I was told to put them in a blender, add a little water and drink the juice. Now that was some pretty potent juice!

Other suggestions has been a clinic in Arizona that uses both traditional and alternative methods in their treatments. I looked into it, but they don’t take insurance and I’m pretty sure they would do a lot of the same things I’m already doing. Plus, it would cost $100,000 + .

A lot of people send me positive thoughts and some send me prayers. I appreciate any positive thoughts and/or prayers you can send my way. I believe in the power of positive thinking and think that being optimistic produces good outcomes. I was particularly touched by all of the nice emails, posts to this blog and comments on Facebook that my friends wrote. Those messages seriously improved my mood and lifted my spirits.

Wish me well as I go to the Fresno Cancer Center tomorrow for the first of 10 full brain radiation treatments. I appreciate your support and kind words.

***

Friday, March 2

I’m now scheduled to start a series of full brain radiation treatments – those will start on Tuesday, March 6 and go for 10 days. I expect to loose whatever hair I have left on my head, including eyebrows. There are a lot of other potential side effects, but not doing it is not an option. The uncontrolled growth of cancer tumors in my brain would not end well. The hope is that the radiation will kill the cancer and not do too much damage to me.

Following the brain radiation I will start the immunotherapy treatment that will attack the cancer from a different direction. The radiation more or less blows the cancer cells up, whereas the immunotherapy treatment enables my white blood cells to do their job of seeking out and destroying the cancer cells.

It feels a little strange saying so, but I feel pretty good right now. I’m not in any real pain, I sleep well and have all the energy I need to get me through the day. Time seems a little different because I’m always checking in with myself, asking if this is what I want to be doing if I only have a limited amount of time left. The answer is usually yes. I don’t have things (like a bucket list) that need to be done. So, I go about doing a lot of routine things, writing some and seeing a few people. I have cut back on social activity as I don’t really want to be in large crowds – I have a few health concerns (catching a cold or something) that could come from seeing lots of people. Also, I don’t want my health to be the focus of the conversation when I see people.

For now, I’m going to continue with my cautiously optimistic expectations for the future, take each day as it comes and enjoy the time spent with friends and family. I wish I had something for everyone who has offered to help – to do, but nothing comes to mind. If I need anything, I will let you know.

***

Tuesday, February 27

I would like to recommend a book for my friends who have more stuff in their houses, garage, shed and/or storage containers than they know what to do with: The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter, by Margareta Magnusson. You just might find it, like I did, a liberating experience.

Last summer when my mom moved into a Residential Care Facility I needed to sort through her accumulation of processions, so our family home could be restored and made livable for Simone (my daughter) and her family. My mom was a bit of a pack rat. Not only did she save 60+ years of memories from living in one house, she also moved many of her parents things in when they passed away.

There was some amazing stuff stored at my mom’s home. For example, there was a letter from the 1920’s my grandfather sent to my grandmother, before they were married. There was an amazing collection of photos going back into the late 1800’s and a hump back suitcase that probably arrived during the gold rush. On the other hand, there were Christmas Cards received during the 1950’s, magazines that had rotted into dust and a box with my baby teeth.

How do you sort through all of that stuff? Well, the above mentioned book is a good place to start. If you can sort through your things you no longer need while you are still able to, it will make life a whole lot easier for those you leave behind. Believe me, if you don’t want to sort through and de-clutter your things, your spouse, children and friends are even less likely to want to do it.

***

Sunday, February 25

Most of the time it is difficult to reconcile the diagnoses I have with how well I feel. In general, I have enough energy to do most of the things I normally do, like mowing the lawn, spending the day with my three year old grandson (who is a bundle of energy), cleaning out the garage etc. But, yesterday was a little different. I felt fatigue, my pulse rate was up and I felt like I was coming down with a fever. Then. . . it all just went away and I feel pretty close to normal today.

Vanessa (our daughter), Anool and their 8 1/2 month daughter Amelia spent the weekend, we gave away a bunch of stuff from the garage and had my mom over for dinner on Saturday evening. So, there was a lot going on, but I’m so used to feeling well that feeling a bit off concerned me and made me think about what a decline in my health might look like.

Then, last night we watched the new film 3 Billboards in Missouri. The sheriff in the film had cancer and in a dramatic scene (SPOILER ALERT – if you don’t want to know what happens in this part of the movie, skip down to the next paragraph) the sheriff his wife and two kids spend a great day together and that night he goes outside puts a gun to his head and kills himself. I totally get why he did it, which was explained in notes that he left. He wanted his family to remember him as the vibrant healthy person he was and not have their final memories of him as someone in decline, who suffers a slow death, is in pain and has no realistic prospect of survival. I totally get why he did it.

At this point in time I still have hope that I might have a reasonably good quality of life, with enough meds to ease the pain and I also believe that it is possible that if certain things went extremely well (with the radiation and meds) I could live another couple of years. So, I’m far from being at the place where the sheriff in that movie was at.

Next week, I go to a chemo class (to prepare me for what lies ahead down that road), I have a meeting with a neurosurgeon who will give me an update on how things are looking with the bones in my spine (the ones that the cancer spread to) and on Wednesday I have a consultation with the team that will be doing the whole brain radiation. Probably, the whole brain radiation will start shortly after the consultation and last for 5 – 10 days. About a week after that I expect to start the Pembrolizumab medication – that is the immunotherapy drug.

I’m pretty impressed with how much time I’m spending in clinics and hospitals. It is like a part time job. And, I’m extremely thankful for each day I have when I feel good. I hope you appreciate and take advantage of every day too.

***

Thursday, February 22

Yesterday I sent out some emails to friends and co-workers about my health issues. I also posted a link to this blog on my Facebook page < https://www.facebook.com/mike.rhodes.7758 >. I received over 100 comments and well wishes that made me feel loved, cared for and appreciated. I thank you all for your thoughtful remarks and support.

Re-reading my first post and based on one of the comments on Facebook, I want to clarify that I’m approaching treatment of cancer as aggressively as possible. I have already completed two weeks of radiation therapy and am scheduled for full brain radiation starting next week. After that I will be taking a new drug (Pembrolizumab) that will work with my immune system to attack the cancer. If that is not working I will move on to the more traditional chemotherapy.

The Pembrolizumab is a new drug that I’m eligible to take based on genetic tests of the cancer I have that indicates it will help my T-cells to identify and kill the cancer. My understanding is that the cost of this drug is $80,000 for a six month course of treatment. Kaiser is willing to spend what it will take to save my life.

There are some downsides to aggressively attacking the cancer. Those are generally referred to as side effects of the treatments. The treatment of the first round of radiation on the cancer on my bones has made me somewhat fatigued, given me a bad sore throat, and resulted in some serious pain in my neck.

The full brain radiation has a whole bunch of potential side effects, but will almost certainly include a loss of cognitive function. The Pembrolizumab might make my immune system attack healthy organs, thinking they are cancer, and that would obviously not be good. In short, killing the cancer is going to take a toll on my body. While I’m optimistic that these treatments will give me additional time I am also totally prepared for the worst.

Yesterday my wife, Pam, suggested that I start writing about my life. She knows I like to write and it seems to me that it could be enjoyable and therapeutic to put some ideas down on paper. For example, I was thinking about what happened when I was young that sent me down the road of working for social and economic justice. I think diving into telling that story would be fun and might be interesting for my children and grandchildren to read. I would have loved to find something my grandparents or great grandparents wrote that gave me some insight into what shaped their core values.

***

February 21, 2018

In January 2018 I was diagnosed with stage 4 lung cancer. What that means is that I have lung cancer and it has spread to other places in my body. In this case, the cancer has spread to the bones, lymph nodes, and brain. This is not good. The doctor says I *might* have a year to live.

I discovered the cancer because of a pain in my hip which did not go away. As you know, I exercise, eat well, don’t smoke (never did) and take good care of myself. So, I was really shocked with the diagnosis. My Kaiser primary care physician did an x-ray of my hip and discovered the cancer. That discovery led to more x-rays which found the cancer is in several places (upper spine, lower spine and hip). I have been in radiation treatment for the last two weeks to address the bone cancer.

Yesterday (February 20) Pam and I went to the Bay Area to have them do a radiation treatment on seven (small) cancerous growths in my brain. The trip did not go well. In preparation for the treatment they did another MRI and found 30+ growths, too many to be treated with the tools they had available. They were going to use a “cyber knife” to selectively zap the growths, but there are just too many for that technique.

The next option for the brain cancer is to go at it with a full brain radiation treatment. That is not good, because the side effects are worse than using the cyber knife. But, allowing the cancer to grow in my brain is not an option.

The other way to attack the cancer is with chemotherapy and immunotherapy. I will probably start immunotherapy next week. I’m cautiously optimistic about this treatment, because it will empower my immune system to fight the cancer. It has been explained two different ways to me:

•  I was told that immunotherapy will unmask the cancer cells so my immune system can attack and kill them. I like the sound of that.
•  I was told that the drug I will be taking for the immunotherapy will hype up my immune system and make it more aggressive, attacking the cancer and anything else it might perceive as being a threat. That could lead to it attacking other parts of my body (the colon, for example) and causing significant damage.

Next in line of treatment options is the traditional chemotherapy.

My doctors say that all of the above treatments will push back but not cure the cancer. I think that it is just too far along to hope for a cure, but if things went really well I could live a year or two longer.

I really wish that all of this was not true and that I would wake up from this nightmare, but just like Trump being in the White House, this is my reality. I’m not in very much pain right now, I have a great support team (my family) and I do appreciate every day I have left (as long as my quality of life is good and the pain is not to great).

I have had a good life, been able to do more things and go more places than I ever imagined and feel that the work I have done was meaningful and helped change the world for the better. I’m extremely proud of my two daughters, deeply love both grandchildren and was fortunate to be married to my best friend and partner Pam Whalen for 40 years (this October).

Several people have asked if there is anything they can do to help. If I need anything I will let you know. It would lift my spirit to know that you did one extra thing today (this week or this month) to bring us closer to peace, social and economic justice.

There are two projects that I helped to create that mean a lot to me. The Community Alliance newspaper in Fresno and the Central Valley Progressive PAC. If you really want to make me happy, you will support the Community Alliance newspaper, which is an alternative/independent voice for Fresno and the Central Valley. We need a strong and vibrant free press that gives a voice to the voiceless and supports the progressive movement in this area. You can find out more about the Community Alliance at www.fresnoalliance.com .

Join the CVPPAC which has developed an electoral strategy to help elect progressives to local office. If you think candidates who support issues like peace, social and economic justice should win political power, this is the group to join. Find out more at www.cvppac.org .

How can you help? I think this quote, attributed to Joe Hill (who was a member of the Industrial Workers of the World – the IWW) says it best: “Don’t mourn, organize!”