Introduction

I consider myself a person first. I will never refer to myself as a cancer patient. I never refer to myself as the type of cancer I have. I’m always Burt who happens to have cancer. That’s the way I refer to myself because I never want the disease to define me.

I’m a native New Yorker. Moved to LA, San Francisco, back to New York, Connecticut, and then, ultimately, ended up in Portland, Oregon.

I’m married [with] two kids — one who works for a company in Redlands, California, and a daughter who’s a senior in California.

I love living in Oregon. It’s such a beautiful place and I love the outdoors. I walk outside a lot. I hike a lot.

Pre-diagnosis

Initial symptoms

I have chronic Lyme disease and I was in treatment for a long time. I have had a rough couple of years work-wise. I was laid off twice in three years and both jobs were ridiculously stressful.

[For] one, I had flown 71,000 miles in a year by June 1st. I don’t mind travel, but I don’t want to be on planes nonstop so that was extremely stressful and really took a toll on my body and my mind.

The one after was just highly political. I had somebody I worked for that didn’t go well and wasn’t respected by him. He thought he was a great marketer and he wasn’t.

I got laid off from the second job in June of ’21 and my health just started to decline. I wasn’t feeling myself anymore.

As time went on, I started to develop more brain fog. I flew to a conference in Boston and I basically couldn’t think. I couldn’t write a text, I couldn’t write an email, I couldn’t order food. I would lose my phone, which is something I’ve never done before. I wasn’t myself. I was completely out of it.

I talked to my wife and my sister and they both said, “Get on the next flight back home. Don’t stay anymore. Just come home.”

The brain fog was terrifying. And brain fog is a Lyme disease so I actually thought it was Lyme.

I was supposed to start seeing a new Lyme doctor. I hadn’t even had my first appointment with her yet. I called her, crying, and just saying, “Help me. This is the scariest thing I’ve ever gone through.” When you can’t think and you can’t control your thoughts, it’s terrifying. When you’re aware that you can’t, it’s terrifying. 

My Lyme doctor said, “Next time that happens, you immediately walk yourself into an emergency room and say, ‘I think I’m having a stroke.’ I don’t think you had a stroke. I think you have what’s called a TIA (transient ischemic attack).”

It was really, really scary. I’m not great when I’m not in control. I’m not a control freak but not having some level of control is hard for me. It was terrifying. It was sad, but sad doesn’t even really enter your consciousness when it’s like, “What’s going on in my head?”

When I checked into the hospital in early July I had an upper endoscopy. The doctor didn’t do anything wrong, but I think the scope hit my abdominal wall and started bleeding, [flooding] my whole cavity. I almost died on the table from an upper endoscopy. I almost bled out on the table. They had to intubate me.

There’s a lot of scary stuff that I’ve gone through. That being said, I feel amazing. I probably feel more myself than I have in years. I give myself what I call a Burtness scale, which is how much I feel like Burt, where a 10 is I feel exactly like myself and nothing’s wrong whatsoever. I’m pretty high on my Burtness scale lately.

I really feel great. I have two cancers, but I feel great and it doesn’t stop me from doing anything. I drive. I’m self-sufficient. I volunteer for three organizations. I hike. I go to yoga.

Getting the official diagnosis

[During] the first three or four days in the hospital, I was mostly non-coherent because of the brain fog, which turned out to be an ammonia buildup in my brain because I was having liver function issues. They cleared that up and put me on meds that actually helped a ton.

I was in and out of coherence. The day after I had that upper endoscopy, I was coherent enough. The GI doctor came in and he was talking to my wife. At one point, he looked at my wife and whispered, “He knows he has cancer, right?” I didn’t and that’s how I found out.

First of all, there’s no ideal way to hear. Second of all, I refer to cancer as the most successful unintentional marketing ever. You say you have cancer, everybody thinks you’re going to die. There [are] so many things associated with the word cancer that may or may not be true.

I have two types — one is kidney cancer, which can [be] removed by surgery, and the other, I’ll have for the rest of my life. But there are people who have lived 20 years with it or even more and don’t die from it but die from other stuff. Cancer doesn’t terrify me. Actually, not at all. But that’s how I heard.

How other people react to the diagnosis

I wrote this whole article [about] the pity load, [which is] all about removing the pity load from people who are trying to figure out how to react to your bad news.

People want to be helpful, which is nice. But I appreciate it when they’re helpful because they know me and they want to be helpful in a way that’s going to help me.

I got home [from] the hospital and people kept saying, “Do you want us to bring over dinner or do you want us to do meal trains?” It was like, “No, thanks, I’m fine. I get up and cook three meals a day for myself. I don’t need a meal train.”

The “I’m so sorry” was another one. Prayers drive me crazy. I’m an atheist. I don’t believe in God. If you want to pray for me, do it for yourself. It won’t hurt. It can’t hurt, but I’m not excited. There [are] some things like that that are actually slightly annoying to me.

When I talk to people and tell people I have cancer, they’ll say to me, “How are you?” I’ll say, “I’ll tell you, but you can’t tell me you feel sorry for me.” My goal is to remove that conversation from them so they don’t have to feel the whole time, “What do I say?”

I was talking to a friend and she said, “How are you?” I gave her that speech and she said, “That’s fine. I won’t tell you I’m sorry for you.” I went through it. We had a great conversation.

She comes from the health insurance industry and she said, “I know health insurance can be a bear with stuff like this. If you want me to go through all your insurance stuff and see how I can help, negotiate with the insurance company to become a patient advocate, [or] whatever you want, that would be amazing. I’d be happy to do it.”

Treatment

I was in the hospital for two weeks. It was really about stopping the bleeding and getting me stable.

I did have biopsies taken of my kidney and my liver while I was in the hospital, but it was basically a side procedure.

I was at a hospital part of the Providence health system so they set up an appointment for me with one of their oncologists.

My wife and I both come [from] business backgrounds. While in the hospital, we made two lists [with] criteria that [are] important to us in a cancer doctor and then who we want to ask for recommendations.

It turned out that one of my better friends is a radiation oncologist so he obviously knows people all over the place. Then I’m also good friends with somebody who runs a research lab at Oregon Health & Science University, a major hospital in Portland.

We reached out to the two of them first. I had [an] appointment at Providence and they both said OHSU is great.

Treatment plan

They got me on a protocol called CapTem, which is two meds. One is called capecitabine and one is called temozolomide. You also take Zofran for nausea when you take the temozolomide. It’s the same protocol that I’m on now.

The protocol is 28-day cycles. You have 14 days on capecitabine. [In] the last five of those days, you add the temozolomide so you’re on two drugs for the last five days and take the anti-nausea when you take the temozolomide. Then you go two weeks off of any chemo drugs.

That’s the only oncology protocol I’m on. In addition to that, I’m trying to go to yoga twice a week. I eat really, really well. I’m trying to exercise more, although it’s been tough. I’m trying to be active as much as I can.

I found that my mental health is the key to my physical health. If my mind is engaged and I’m feeling useful, valuable, and using creativity, I feel better overall.

I go to two naturopaths. Western medicine is more about, “How do we kill cancer?” The naturopaths will be more about, “How do we take care of your body to make sure it’s capable of killing cancer?”

My naturopath is the only one who’s actually said to me, “We have to figure out why tumors even grow inside you.” That’s not a conversation you ever have with an oncologist.

Distal pancreatectomy for PNET

I currently have a 6.5-centimeter tumor on the tail of my pancreas. They’ll remove that part of my pancreas, my spleen, my gallbladder, and then since I have metastases in my liver — I think four or five tumors in the left lobe of my liver — they’ll remove the left lobe of my liver.

I do have some tumors [on] the right side, but they think they can just take those out. Supposedly, the right lobe of my liver has already grown a ton to accommodate for some of the function lost with the left lobe. My kidney functions both show fairly normal in all my blood tests.

I’m not excited. To me, losing organs is just such an unnatural solution. In 10 or 15 years, no one’s going to do this surgery anymore because it’ll be considered barbaric, but it’s what we have now.

My surgeon has told me it’s a serious surgery. He said, “You could be on the table for nine and a half hours. I’m going to be in constant conversation with the anesthesiologist about, ‘Do we think you can take more or are you losing too much blood? Do we need to close you up and have you come back in four months or can we get most of it out?’” 

They won’t get 100% of the cancer out. Again, the kidney is different. They can get 100% of the kidney, I think.

I started to look for those things. I’m Jewish. I’m not practicing but because of my upbringing, I remember when Yom Kippur is every year. This year, I couldn’t fast. I’ve always done it just because I like the concept of not focusing on food for a day. It’s pretty amazing if you haven’t done it.

I decided to go take a walk in the woods instead — no headphones, no music, [and] no podcasts. I decided that I wanted to organize myself.

I built my own strategic plan. My goals moving forward are to heal myself, to help others heal, and then to help others who can help others heal.

The first one is obviously just about me. The second one was about meeting as many patients as I could, helping both one on one and group, and volunteering. Then the third was a job specific to healthcare where I can make a difference in people’s lives.

Once I had those three guiding principles, that kind of organized me. I actually removed myself from stuff that wasn’t healthy and didn’t fit those principles. I resigned from a board that had nothing to do with helping other people.

I started to put different things in those buckets. Yoga has made me feel great in the past so I want to start doing yoga. I know it’s going to open my body more. It’s going to let things flow better. I started going to yoga twice a week.

Importance of a positive mindset

I’m very, very, very lucky and I’m very grateful. I know who I’m grateful for, but I don’t know who I’m thankful to.

I have an amazing support system. My wife is unbelievable. My medical team is great. My two naturopaths are both amazing. There’s a really strong community, even though it’s a kind of rare cancer that I have.

You have two choices. You can just sit around and wait or you can just say, “You know what? I have it.”

Sometimes I accuse myself of not dealing with the fact that I have it. I was in therapy and my therapist said, “What do you want to work on?” I said, “I think I need to get more in touch with myself emotionally. I have cancer. I have [what] a lot of people consider a deadly disease. I don’t really deal with it. I just ignore it and I go on and do other stuff.”

He said, “We could try to break all that stuff down, but it’s doing a lot of good for you right now. Those defense mechanisms are letting you feel good and it’s letting you do all these things. So for me to strip those things away from you right now, that’s not a good idea.”

A lot of nights, before I go to bed, I will say to myself, just in my own head, “What else can I be doing to make myself feel better?” Sometimes I actually get answers back. Sometimes I don’t. Sometimes there’s nothing interesting.

It’s like, “Okay, that just tells me [to] stay the course. I’m doing fine.” There are other days like, “Yeah, you really should reach out to this person. I think it’ll help you a lot.”

I know that sounds a little wacky, but you know a lot more than you give yourself credit for. Looking inside and trying to find those things that get you excited and put a smile on your face are the places I would start.

You’re always going to be your own advocate. There’s no way to say this, but our healthcare system sucks. There are some decent people who work in it and there are some good people who work in it, but the system itself is horrible. If you don’t advocate for yourself, a lot of times, no one’s going to advocate for you.

I was bedridden in the hospital. If I got out of bed, the alarms would go off. My mom wanted to talk to me and my wife said, “Nice Burt has to go away. If you don’t feel up to it, you have to say, ‘Mom, I can’t talk now. I’ll call you tomorrow. Hopefully, I’ll feel better.’ You have to stop worrying about making other people happy.”

I’m a people pleaser. I always want other people to be happy. And I learned that early. You have to put yourself first. It doesn’t mean you can’t be sensitive to other people.

Almost every time I’ve gone to my oncologist, I’ve said, “Hey, what about this procedure that I read about online?” I put the onus on him to explain to me why it won’t work.

That’s the one other piece of advice I would give. Three or four months in, I said to my doctor, “Can we have an appointment where we don’t talk about my test results at all? We’re going to be working together. We’re going to be partnering on this for a long time. Can we just talk?” And we did and it was amazing.

We talked about Twitter. He told me who he follows. He told me who his mentor was. We talked about some other doctors and what they were doing. I think we even talked a little bit about his kids.

If the doctor can’t spend the time, they’re going to say, “I’d love to. I wish I could stay longer, but I have to go to somebody else.”

You can say, “Great. So when can we follow up on some of the other questions I have?” Sometimes they’ll say send me an email or send me something through the messaging platform. Sometimes they’ll say set up another appointment, but don’t censor yourself.

The day of the doctor is god is gone. If you treat your doctor that way, it’s only going to hurt you. In the cancer world, everybody expects you to get a second opinion. A lot of them will recommend you do and even give you people to go talk to.