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.
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!”