now has two primary cancers: a renal clear cell carcinoma and an advanced pancreatic neuroendocrine tumor (spread to the liver). Despite his diagnosis, he is still his old self, but better. He volunteers a ton, is an advocate for patients and integrative oncology and takes pretty good care of himself. He is all about his next adventures and refuses to let cancer get in his way! And most importantly, his sense of humor is better than ever.

Burt Rosen

Burt Rosen has two primary cancers: renal clear cell carcinoma and an advanced pancreatic neuroendocrine tumor (spread to the liver). Catch up on all of

‘Twas the week of the first holiday and all over town

Families and friends were coming, to see who else was around

How has life changed we ask when thinking of them

Well nothing is the same, but in some ways, it’s better than then

It is so nice to have our close ones around

Even when with our treatments we still abound

I am getting a shot on Monday, an appointment and acupuncture this week

But even those events, won’t turn this week bleak

On Thanksgiving, a lot of people like to play the “What are you thankful for?” game

And despite my spontaneousness, I will still try to frame

What I am thankful for despite all that I’ve been through

I am thankful for life, my friends and family, the world and all of you

Will I eat a bunch? Sure, it’s just what you do

But I will try to eat as healthy as I am able to

Lots of veggies and fruit, and some proteins also

And I am eating that all to feel better and not for all show

Dealing with difficult stuff has given me my share

Of things to think about, that much I know

But because of all of those things, I am happy with how I grow

I’m more open, and honest, and engaged and grateful

I’m more happy, self-aware, appreciative and not hateful

My mind is doing great, and luckily my body follows

But even when it doesn’t, I never feel hollow

I’ve found my purpose in trying to help others

Mattering is important, maybe the most if I had my druthers

So, what will I end with for you, the fair reader?

Be appreciative, realize what you have and in the emotion be a leader

So have a great time with those close ones around

And never forget, you are here which might astound

We are stronger than we realize, of that I am sure

And the holidays and close peeps can always help cure

Whatever your feeling, whether it's low or it’s high

There is nothing that can’t be cured by a great piece of pie

Let’s not let our cancers ruin what we do

If we have to step back, you can take smaller steps and still enjoy

And even if you can’t have dairy, can you still have soy?

But have a great time throughout this holiday season

And never let your illness, be the overarching reason

That you can’t enjoy family, friends and the rest

And let’s make this holiday season feel like the best

There will be plenty more holidays, I hope for you all

So have a great night and give someone a call.

Yes, we have stuff and we all deal with cancer

But maybe a happy holiday season can be part of the answer.

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Articles

The narrative reflects on the transformative impact of cancer on personal life, emphasizing gratitude, self-awareness, and the importance of relationships during the holiday season. Despite ongoing treatments, the author finds joy in the presence of loved ones and the ability to help others. The message encourages embracing life, appreciating what one has, and finding happiness in small moments, even amidst health challenges. The holiday season is portrayed as a time for reflection, connection, and healing, with a reminder to not let illness overshadow the joy of family and festivities.

The holiday season is here, so here’s a festive poem to remind us that cancer should not control us during this time.  

A Holiday Poem: Who Says Cancer Doesn’t Rhyme? 

If you are like me, you found yourself leaving your oncologist's office after your diagnosis and asking yourself “What else can I do?” Little did I know at the time, but this question would become foundational for my care.

I started to research a lot, and I started to learn. I read a lot, Googled a lot and reached out to tons of random people. I became very involved in the integrative oncology world and began to realize how important it is to take care of Burt, not just Burt’s cancer.

First, some definitions. I will source the definitions, so you know I didn’t make them up!

Integrative oncology is a patient-centered, evidence-informed field of cancer care that utilizes mind and body practices, natural products and/or lifestyle modifications from different traditions 

 conventional cancer treatments, according to the Society for Integrative Oncology.

Complementary medicine is a term used to describe the types of treatments you may receive along with traditional Western medicine. Examples of complementary medicine include massage, meditation, biofeedback, tai chi, reiki, music therapy, guided imagery and dietary supplements, according to the Cleveland Clinic.

Treatments that are used instead of standard treatments. Standard treatments are based on the results of scientific research and are currently accepted and widely used. Less research has been done on most types of alternative medicine. This may include special diets, megadose vitamins, herbal preparations, special teas and magnet therapy. For example, a special diet may be used instead of anticancer drugs as a treatment for cancer, according to the National Institutes of Health.

Ok, so I came out of my oncologist's office (this was mid-2022) and wanted to find out what else I could do to help myself. I found the Society for Integrative Oncology (SIO) through Google and other research. I am not a shy person, so I sent the president a note (she had no idea who I was) and she referred me to some other people who got me involved, whom I now consider friends. For transparency's sake, I have been involved with SIO for two years and am co-chair of several committees and involved in other areas too. I also found my favorite quote about integrative oncology (IO) that I now use all of the time from Dr. Donald Abrams at the Osher Center for Integrative Medicine at UCSF: “Cancer is the weed, we need to tend to the garden.”

What I like about integrative oncology is that there have been some studies behind it, so it’s evidence-based. I believe that all modalities have a place, so I leaned into that idea and started to build out my overall treatment plan. We always talk about being our own advocates and there is no one else who will build a western and integrative plan for you unless you do it yourself (now AI can help but 

So, I am big into integrative. I believe in complementary (very similar) and some alternative too, but I focus more on integrative. To me, I am a big believer that just because something hasn’t been proven to work, doesn’t mean that it doesn't work, it just might mean that no one funded the study. I don’t discount things that people say help them because no one has “studied” it. I may or may not try them.

What are the integrative treatments that I do? I do intermittent fasting to put less stress on my organs, meditate, try to do yoga, try to walk outside, eat a diet with lots of fruit, vegetables, nuts, seeds, etc., take some supplements, do acupuncture, see a team of naturopaths, weekly therapy, etc.

Can I tell you that any one of these things makes a difference? No. But can I tell you that I am doing great, get an injection once every 28 days, do all of the above and am very lightly symptomatic? Yes, I can.

As I said, I am a believer in integrative, meaning everything works together. When people ask me what treatments I have, I mention all of them, not just my medical treatment. They all work together.

Think of it like this: if you get chemo, do you think the chemo works better if you are eating healthy and have a healthy mindset, or if you eat all processed junk foods and are negative all of the time? Right, the first one. Mind you, I eat junk food, just not all the time. I still want to enjoy myself!

In general, with two types of cancer (renal clear cell carcinoma and an advanced pancreatic neuroendocrine tumor), I am pretty self-sufficient. I just got a job, drive everywhere, meet people all the time, go hiking, walk, cook, clean, etc. I feel like I am doing great and all of the above are helping me.

Some of the benefits of the IO treatments are also in how they help my mental health. I am more present, more engaged and more self-aware than I have ever been. And that comes from the focus on IO therapies, not my injection. In fact, I figured out that my injection is less than 1% of the time I spend in a 28-day cycle. So, that leaves 99% of my time free to focus on other ways to help myself and my quality of life (yes, lots of poetic license in there!).

Did you know that acupuncture can help with pain and neuropathy?

Tai Chi is good for depression and anxiety?

Meditation and mindfulness-based interventions can help with pain and symptom management.

These have all been studied and have data behind them. Google them or look for ASCO-SIO Guidelines and you should find them. Or ask me. I am pretty easy to find.

There has been a lot of medical tradition that has existed for way longer than Western medicine and when you are in the mode of “What else is there?” why wouldn’t you try things that cause no harm? Chemo can be harmful, but therapy isn’t. I want to exhaust the things that I can do that won’t hurt me before I do more things to kill a part of me (but that’s me and we are all different).

Society for Integrative Oncology: if you are interested, find me and reach out.

Cancer Choices: a great site about integrative oncology meant for patients. Good reviews of different treatments.

Anti-Cancer Lifestyle: a free course on how to live a cleaner life and help live with cancer or try to avoid it.

Healing Works Foundation: Dr. Wayne Jonas, a leader in IO, started this organization. Tons of great resources for patients and for institutions that are interested in IO.

That wraps up some general thoughts on IO for me. I am off to the SIO conference in Irvine, California this week, from Oct. 25 to Oct. 27. I am so excited. I went last year, and I learned a ton and met some amazing people.

It’s so different than traditional medical conferences. At SIO, I learned about psychedelics, cannabis, yoga, ayurveda, micro-biome and hypnotherapy. I even learned about the effects of playing golf on men with advanced prostate cancer. No one is making billions of dollars off of any of these, but they can all help people, and that's what IO is all about — patients, not profits.

If anyone has any questions, please reach out to me. This has made a big difference for me, and I am so happy to help others better understand IO and its benefits. (Tip: A lot of IO treatments are great for caregivers or people with any issues too, health or mental, not just for people with cancer).

Integrative oncology emphasizes a holistic approach to cancer care, combining conventional treatments with complementary therapies like meditation, acupuncture, and dietary changes. This patient-centered approach aims to improve overall well-being and quality of life. While some integrative practices lack extensive scientific validation, they are often supported by anecdotal evidence and smaller studies. The focus is on non-harmful interventions that enhance mental and physical health. Resources like the Society for Integrative Oncology and Cancer Choices provide valuable information for patients exploring integrative options alongside traditional cancer treatments.

In addition to receiving my traditional cancer treatments, I also opt for integrative medicines, which have helped my mental health.  

In Cancer, the Whole Is Greater Than the Sum of Its Parts 

Burt has two primary cancers: renal clear cell carcinoma and an advanced pancreatic neuroendocrine tumor (spread to the liver). Catch up on all of 

I am a person who truly believes in integrative treatments for my renal clear cell carcinoma and advanced pancreatic neuroendocrine tumor. For me, integrative means that everything has a place. Western oncology kills my tumors, integrative oncology helps my body. As one of my favorite quotes from Dr. Donald Abrams says “cancer is the weed, we need to tend to the garden.”

Because I am such a believer in an integrative approach, I have become very involved with the Society for Integrative Oncology. I am a co-chair of the member and patient advocacy committees. Because I am so involved, I will be on a panel about AI in Healthcare at the annual conference from Oct. 25 to 27 in Irvine, California (I highly recommend this event, I went last year and it blew my mind and gave me new things to think about).

Now, I am no expert in AI, but I am a guy with two cancers and lots of questions! So, I’ve started to explore how AI can help me. (and you don’t have to be tech-savvy to use it).

I've been focused on trying and using ChatGPT for now. I started off with some simple stuff. For example, I uploaded my CT scans into it and asked it to give me my summary in plain English so I could understand it. It did a good job!

Burt's ChatGPT results after a scan to help interpret the meaning. 

I actually asked it some follow-up questions about my lymph nodes and it was able to give me more in-depth info. I hope it’s OK that I shared my data! (It’s not a HIPAA violation if I share it!)

I also uploaded all of my symptom-tracking data (I track my symptoms and score them daily). It trended the data for me and built relationships around different symptoms. For example:

The chart shows how fluctuations in water intake, fasting duration and exercise might relate to the variations in these symptoms and emotional states over a 30-day period. Let me know if you'd like further adjustments or a deeper analysis!

Pretty cool! All of a sudden, all of the data I have could be used for trending and finding relationships between symptoms, treatments and diagnoses.

Next, I asked it to build me a treatment plan for integrative and Western oncology based on me and my diagnoses. It built me a side-by-side chart showing me different treatment options.

Burt's Chat GPT results for a Western treatment and integrative oncology plan.

But as helpful as it is, you can also have fun with it (cancer isn’t fun, but who is to say that it has to be boring?). I asked it to give me my CT scan results in the voice of Samuel L. Jackson:

1. So, your liver tumors? They’ve gotten a bit bigger since March, but that could be the difference between MRI and CT. We’re gonna watch that s**t closely.

2. The pancreatic tumor? Stable, baby. No major moves.

3. And your right kidney tumor? That thing is holding steady, just like before.

Now go ahead, talk to your docs, but remember — ain’t no surprises here. Just gotta keep fighting like the badass you are."

And lastly, for now, I asked it to give me my integrative plan in Jerry Seinfeld’s voice:

"Well, there you have it. The ultimate cancer care combo — Western medicine meets holistic healing. It’s like a health buffet: a little bit of this, a little bit of that. You take what works, leave what doesn’t and keep fighting the good fight!"

There is no reason not to experiment with AI. While you have to take it with a grain of salt, it’s a great way to get questions or to understand things

The better, more detailed and more specific prompts you use to ask your questions, the better and more helpful the answers will be

It will generate graphs or images/illustrations if you ask for it. It charted all of my symptoms

I have found it most valuable for pulling together disparate data sets. For example, in my integrative example above, there is not a doctor on earth who can make recommendations for how to treat neuroendocrine tumors, kidney tumors with Western and integrative treatments. Asking ChatGPT was the first time I ever got a truly integrated plan

Don’t be afraid to ask…ANYTHING. It’s a pretty incredible tool

It will get so much more accurate and helpful over time, but it’s already ready to help you have a much broader view of what you are going through.

Give it a voice to answer in. Do you want your doctor? A friend? A celebrity? A singer? It will deliver the info in the voice you ask for. It makes it easier (and more fun) to absorb the information.

I am going to keep playing with AI and exploring, and I advise you to do the same. While I wouldn’t take what it says as gospel, it will help you ask better questions of your doctors and might even help improve your quality of life and overall health.

Integrative oncology combines Western and holistic treatments, offering a comprehensive approach to cancer care. AI tools like ChatGPT can assist patients by simplifying medical data, identifying symptom trends, and suggesting treatment plans. These tools can also present information in engaging ways, making complex data more accessible. While AI should not replace professional medical advice, it can enhance patient understanding and facilitate better communication with healthcare providers. Experimenting with AI can lead to improved quality of life and a broader perspective on personal health management.

Cancer is complicated, especially with multiple diagnoses, oncologists, tests and integrative treatments, but AI can be a helpful tool. 

You Can’t Spell Patient Without AI 

A lot of times in life, we can figure out who we want to be and what role we want to play. Do we want to be social? Funny? Athletic? Smart? Artistic? Talkative? Quiet? Healthy? Etc.

But then something hits you and you realize that you sometimes can’t decide who you are until you figure it out. Building the plane as we fly it, as we like to say.

When I was diagnosed with renal clear cell carcinoma (kidney cancer) and metastatic pancreatic neuroendocrine tumors two years ago, I realized that for me, knowledge was power. I joined every support group I could find, read articles, subscribed to social media accounts, etc. My resources were limited because metastatic pancreatic neuroendocrine tumors are uncommon but there was some stuff out there. Having an uncommon cancer makes identity even harder.

As I started to attend more and more support groups, I started to feel slightly out of place. My first support group was filled with people who had my cancer type for over 15 years. They talked about what gel to put on your butt before you get an injection, but I hadn’t even been prescribed it yet. I was a newbie and hoped to discuss things like “How do I help my family deal with my cancer?” but I quickly learned that I wasn’t a fit with that group. I tried several others and learned the same thing. My fits were never good and I got great connections from the groups, but not a lot of the kind of support that I needed. And I didn’t feel like I belonged.

Some groups were too sad for me (bad for my mental health), some had people who had been living with it for a while, some were too religious and most generally didn’t match my energy. So I pulled back from a lot of the groups. I have met some amazing people in the groups, and I talk to them one-on-one or in small groups. Some of my closest friends are now people that I met in the groups. We even meet outside of the group setting.

So, I didn’t really know (nor do I now know) how I fit into my/the cancer world. I am very lightly symptomatic, and a lot of those around me aren’t doing as well as I am. I was actually once scolded in a group because I talked about how good I felt and how well I was doing.

But this led me to question myself. Am I an impostor (defined as not feeling as worthy as others)? Am I having impostor syndrome, where I feel like a fraud since I am not as sick as a lot of others? Do people care about my thoughts and opinions because I am a newbie and feel pretty good?

This all kind of threw me for a loop. I am a pretty confident guy and have a fairly large ego, so feeling like an outsider isn’t fun for me.

I work on this question a lot (am I an impostor and what’s my role or purpose in this community?) both by myself, with my therapist and with those close to me. I am not sure that I will ever have 

 answer, as I am learning that my role can shift over time.

For me, where I am today is that I care about individuals, not organizations. I want people to feel supported and helped; not alone. I have a sense of humor, and although I have a serious diagnosis, I can still laugh about a lot of things, including my cancer. I like adventures. All of these things help me define the role that I am beginning to carve out for myself. I want to help, I am patient first (as opposed to organization first), I can offer a different perspective, I will help or talk to anyone, and I want to bring in ways to help people who aren’t only pharmacologically based. I also want to help use my energy to let people know they are still capable of enjoying life and I want to use stories to make health care feel more personal.

As we all know, there isn’t only one way to deal with cancer, so I like to bring new perspectives (I am heavily involved in the integrative oncology world, I’m a marketing guy and a storyteller). My role is to try to help people, in whatever stage or phase they are in. If I can’t help them, I can connect them. I’ve met enough people now.

But the impostor thing is really tough. I have a serious diagnosis with two primary cancers, one being metastatic, but I feel pretty good. Do I have a right to talk when I am with people doing worse? Should I be quiet?

I guess where I am currently coming out is that I am who I am. I have what I have. I think what I think. I am no more of an impostor than anyone else.I don’t think there is a described role for me as I don’t think there is for anyone. I think the role I play is the role that I create for myself.

We are all individuals and so unique. As people, we are all different. We all have different diagnoses and conditions. We all have different personalities, needs and things and people that we care about.

Play the role you want to play, not the role you think you need to play. You are not an impostor. EVER. You are you and that’s as real as it gets.

Understanding how I fit in matters to me but figuring out my identity in the cancer space is not always easy.

Burt Rosen

A Holiday Poem: Who Says Cancer Doesn’t Rhyme?

In Cancer, the Whole Is Greater Than the Sum of Its Parts

You Can’t Spell Patient Without AI

Feeling Imposter Syndrome in the Cancer Community

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