Health blog

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, scroll down.

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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, 1018

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!!!

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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.

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Photo exhibit A

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!”

37 thoughts on “Health blog”

  1. Mike I am very glad you wrote the events, your feelings & process you & your family are moving through with the complexity of this cancer. Your Life is one grateful journey with all the small moments–conversations, observations & actions of problem solving & we show kindness to each other. I am so glad to be your neighbor & know you & Pam since the Blackstone House Days, see our children growing & life in abundance. Thank you for being so specific about your cancer, your treatments & how we can help You as this blessed community who supports one another through thick & thin.

  2. Mike, I am so sorry you and your family are faced with this horrendous diagnosis. By I am commenting now to tell you that one of my relatives faced Stage 4 lung cancer which had spread to other locations too and she was treated by immunotherapy which was successful and 5 years later her scans are still clean. She was a smoker since her teenage years but had quit several years prior to the cancers appearance. She was also older than you are now at the time it was found. So please know that this new therapy works and your immune system might very well surprise and delight you! I certainly hope so!

  3. Mike, I read your post with much sadness. When my father was diagnosed 15 years ago it also began with a pain in his hip that would not go away. The pain spread to his back and ,after many trips to many doctors, he was diagnosed with cancer and also given six months to live. His cancer had spread so widely that at his age (75) the treatment would have probably killed him. The shock your family is feeling is something that our family also experienced. Dad managed to survive for almost a year and we did our best to keep him comfortable.

    I have always appreciated the work you and Pam do for our community. Please know that I will pray for you and your family. I will try to support your causes as much as possible. Please tell Pam that I am here, and can help in whatever way I can. Thank you for having the courage to share your story. Hopefully one day a cure for this horrible disease will be available to us. In solidarity…..Grace

  4. Hey Mike,
    So very sorry to hear of your illness. I will be praying for you brother! I want to thank you for all of the great work you have done in our community. If you need anything I am one more resource.
    Marina

  5. Mike, I am the woman who took a tour of the tent cities with you in ? 2006 as I was writing my text on portable housing.

    I am saddened at you medical complications, but my ex husband was found with stage 4 malignant melanoma after 12 years of chemo for non-Hodgkins lymphoma and was put on immune therapy. It’s been three years. He has had a lot of ups and downs, but mostly reversals are in the form of drops in his platelet count. The last two times the news was delivered him while he was out on his tractor or stacking fire wood. I am hopeful for you because I have seen the time this new therapy has given him.

  6. Wow. So sorry to hear this. The Community Alliance has always been one of the causes we (Steve Sacks and me) have supported. It is a legacy to be honored to be a part of. Positive thoughts for you and your family.

  7. Dear Mike, Thanks for doing this blog. Hang in there. You are absolutely right about living a wonderful life that has left the world better, and you continue to do that. I have a pretty flexible schedule and would be happy to provide rides to wherever you want to go when I can. Don’t think twice about asking. (You too, Pam). Suddenly Carpe Diem comes vividly into focus.

  8. So sorry to hear about your illness. You have always been so healthy! You never know what’s around the bend. You are a strong person and I know you will fight this until you win the struggle. I am sending you tons of good vibes and wishes. Let me know if there is ever anything I can do to help.

  9. Dear Mike,
    I am deeply saddened to learn of your diagnosis… and encouraged that you and your doctors are doing everything possible to extend and maintain the quality of time you have left. I have always admired you and Pam for your community organizing and dedication to progressive candidates and causes. You have made a difference!
    I am a cancer survivor myself, and I have traveled this road with several loved ones… so I hope you will accept this advice in the spirit of love with which it is offered. When the time comes… and you will know… please seek the services of Hinds Hospice sooner rather than later. The support that they will give your family, and you, is a real gift. I wish you, Pam and your family a miracle… and a gentle journey down this difficult path. Sincerely, Myra Coble

  10. Dear Mike, You have lived a life of impact and consequence, and you’re clearly not done yet. Thank you for giving us your story, and for making a space to remind you how important you are to us. I have a fairly flexible schedule and am happy to provide rides when needed if I can. Please don’t think twice about calling (you, too, Pam).

  11. Wow.. Iam in shock… i wish this on nobody.. unfortunate god has our will. You have been a great supporter in the homeless community… you will never been forgotten.. you have have touch many families in so many ways… prayers sent out for you and family..

  12. Dear Mike, I have been very impressed with your politics, efforts, concern for people, and love for Pam and family since the early LASC days. I am so saddened by the recent medical issues. It is important to let you know how much you are admired by our community. Take care and love you a
    lot. Barbara

  13. Mike, I was hesitant to respond today, as, you probably have 1000 replies to read, but I couldn’t not respond. Our family has loved your family for over 20 years. You were like a second dad to Kaila and I always appreciated you having her over and and trusting me with your daughter as well. I am very sorry to hear your news, our news. You’ve done so many great things to help others and I’m happy you were able to do such things and had the drive to do them. There’s nothing better than helping others. If there’s anything any of us can do please let me know and it is done. We wish you peace, love, and painless happiness as you go down this new and unknowing trek. You are in our hearts and our minds and I will think of you daily. I will be keeping up with your progress. With love, Lori and family.

  14. Hello Mike. You have been a great help to me, and mine and we consider you as fsmily to us even though I am the Black sheep here, usually a dollar short, and a day late. You are the one who has set the example for us,ad it was,, and still is the best example I have seeninthis lofe time. We Sarah,, and I have much love for you and yours and we expect you to over come this. If ayone can, you can. We have much faith in you,and appreciate all youhave done for the people. Especially the Homeless Population. With out you,our lives would have been much worse. THANK YOU MIKE. THANK YOU PAM FOR SHARING MIKE WITH PEOPLE SICH AS MYSELF, SARAH, AND THE CREW. WE LOVE YOU BROTHER.

    KEEP THE FAITH.

  15. Mike,
    i am very sorry that this is happening to you. My daughter never smoked a day in her life either . Thank you for all that you do , i admire you and your family very much, like i always tell your mom , “Mike is a good seed” ..

    Your friend, Yellowfeather

  16. Wow Mike, I hope you encouter the best advice to keep you with us. I have seen how your shoes will some day be hard to fill.
    I’ve seen some claims of cures by eliminating sugars, Which I’ve heard feed cancer cells 8 times more than normal cells.
    I feel like advice I received when I had prostate issues at 34 in 1991 might have saved me some suffering. I was told by two different elderly gentlemen, in two different cities, when the topic of elderly prostate cancer in men came up, that occasional drinking of trace amounts, a few drops in a pint, of food grade hydrogen peroxide, could keep prostate issues in control, and that it could create a hostile environment for cancer cells. I can only attest to having prostate issues consistently diminished by this.
    Much love, -Rick Fellows

  17. Mike, thank you for sharing your serious situation. We all really hope the immunotherapy is effective. You are a most valuable member of our community. We all will go sometime. May your time not be up any time soon!! If there is something else I can do for you, please let me know. Howard

  18. So sorry to hear this Mike. So much to deal with. I hope you know ho much I love and admire you, how thankful I am to know you, and for all I have learned and benefitted from your works and friendship. First thing I want to say though is please read about juicing green cannabis leaves to kill tumors. Have had amazing experience with this which I would like to relate to you. I don’t have access to a supply of fresh green but if helpful I would hunt up a bushel for your use. I could also set you up with a nice juicer if useful for you or deliver fresh juice. Hope to talk to you soon. Love always to you and yourn. 765 1909 jem

  19. Mike, I am saddened by your news & understand the challenge you & Pam face in battling this disease. You can do this & glad you are with Kaiser. I fought cancer 3x’s with their oncologists & grateful for their support of me & you. Be kind to yourself, as your treatment lengthens, respect it & protect yourself from those who may have been exposed to an illness. I did not give treatment that respect my first time around & it almost killed me. I am here for you & your loved ones. We are all “in this together.”

  20. Thank you for sharing Mike.We are keeping you in our thoughts and prayers. Keep us posted and keep fighting.
    We are here to support you.
    Regards,
    Anu-Vishal

  21. MIke, this is horrible news. I am so sorry and shocked. Your work and influence will never end. Ask if you need something.

  22. As you know, Mike, my husband Tom died of cancer almost two years ago after 3 years of illness. He too was a Kaiser patient, and he never doubted he got the care he needed after he was diagnosed. We did elect to go to San Francisco Kaiser for his surgery, and Kaiser was flexible about our need for decision-control. Tom was rarely in much pain, and our love only grew as he slowly passed out of this life. As his partner in this journey, I can only send you my sincerest love for Pam. This will be very hard for her.

  23. Mike (and Pam)
    Saddened by your news, but happy that you now know what you are fighting (often half the battle). I have such fond memories of your support for our union drive at Univision Fresno….and I am pleased to still be organizing and bargaining contracts for working folks.

    Happy to hold your fight in my prayers…..and know that you are beloved.

    Oh, and joined the Central Valley Progressive PAC!
    Fondly in Solidarity,

  24. Mike,
    Thank you for sharing your story. I’m sorry to hear that you’re in such a tough battle. It’s so encouraging to know that you’re getting excellent care and have support all around you. Sending my very best wishes for success with your treatments and healing, my friend. It’s time for all that good Karma you’ve built up over so many years of helping others to flow back in your direction. I believe it will.

  25. Dear Mike and Pam,

    Bev Fitzpatrick just sent me your email. Words cannot begin to express my sorrow. Our community is so grateful for all that you have both done and are continuing to do. I will share with Larry Collins who works with Al and myself as well as Wings. Our love to u both. Karen and Al

  26. Big hugs, Mike. I will be watching your blog even when I can’t think of much to say. You have lived, and continue to live your life so well.
    I’m glad you do know that and take satisfaction in it. I’ve always been a big admirer. You’re one of the best things about Fresno. Yes, I will do what you ask! And also work whatever mojo I possess to help things go well. Big Love.

    1. Hi Maria! I haven’t seen or heard from you in a very long time! I started being a volunteer photographer for the Community Alliance beginning with the Nov. 2012 issue. In 2014 Mike took my photo at a CA fundraiser, as he was getting ready to retire from the paper. The photo was for the making of a press pass for me. One of his last acts as editor was to make me my press pass. Now, they even give me a little money every month, regardless of the quantity of photos I take or events I attend. I am an independent amateur photographer.

      I have lived in Fresno for 60 years now! You can find photo albums I post on Flickr at: https://www.flickr.com/photos/147742222@N04/albums/with/72157680190404176.

      By the way, the CA fundraiser was called: “We LIKE MIKE”. We still do. We always will.

      Best wishes to you!

  27. I’m thinking about you right now. You start your full brain radiation after the sun comes up today. If I didn’t have the flu, I’d have already been by with a meal and well wishes…..
    but I wouldn’t dream of exposing you to this. Please know that it is my heart’s desire to lift your spirits. Please have Pam let me know what the food likes and dislikes your family has for the times I am able to help in that way. Peace my friend. Love, Bernadette

  28. Dear Mike:
    I am so sorry to hear about your cancer. Cancer sucks! Our 37 yearly daughter, Mary, was diagnosed with cancer of the small intestine. We have been traveling this cancer journey with her since last June. We know the navigation and the “job” it is just to go to appointments, treatments, etc. You and Pam are in our prayers. You know, we Catholics say a lot of them, LOL! We have found that surrounding oneself with those you love and whom love you is the best medicine and can get you through the worst of the pain and treatments. Soak up days and nights taking in all that love. Have Pam call us with and needs…even Mary Jane. LOL! Love e you!!

  29. Hi Mike,
    I’m so happy to hear that you are weathering the treatments so well.
    A word about cannabis–a lot is being discovered about the many chemicals in cannabis and their therapeutic effects. Cannabis contains dozens of chemicals. Some reduce nausea, some reduce pain, some improve appetite, and there is much more to be known about possible use for cancer and even Alzheimers. I am no expert but I would encourage you to look into medical marijuana products, the kind you get a prescription for. (not that the other kind aren’t worth a try also, but the medical formulations are likely to be more targeted toward a particular result).
    The Mexico clinics are most likely scams. There is a truism I like: “we have a word for alternative medicine that works: it’s called medicine.”
    Hugs to you and your wonderful family.

  30. I was glad to see your post 1st three full brain radiation posts Mike…..glad to hear that you are tolerating it well! Your attitude is amazing, which doesn’t surprise me one bit! I’m hoping to hear that someone has hooked you up with the appropriate reel to reel player in working condition and sorry that you are facing this. As soon as I get over this flu, I’ll be contacting Pam to see if there’s something yummy I can bake for you all! Love and peace my friend!

  31. Mike I am deeply saddened to learn of your diagnosis. Please know my thoughts and prayers are with you…I have let my dad know as well…I will pray for you and your family. Please let me know if I can help in any way…

  32. This is such great news, Mike! I’m so happy to hear how well things are going; you are having to live such a different life, with so much new stuff to learn and deal with. Thanks for sharing it with us.

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