This post is for anyone navigating clinical trials and treatments in the ocular melanoma space. I am HLA negative, although I still don’t know what that means. While I never received treatment from Dr. Richard Carvajal at Columbia in NYC, he consulted on my case many times and helped us navigate options. He is no longer there, but I hear Dr. Kahn (NP Diana McConnell) is fantastic.

May 16, 2013, Porter Hospital, Dr. Peter Hovland, Denver, CO: Original diagnosis of ocular melanoma stage 1A and treatment with radiation plaque from May 31, 2013—June 7, 2013

April 2014: negative liver ultrasound

November 25, 2014: multiple liver mets discovered in ultrasound; biopsy on November 28 confirmed stage 4 ocular melanoma.

January to August 2015, Memorial Sloan Kettering, Dr. Andrew Postow (cutaneous), NYC: 1^st clinical trial; treatment with MEK162 (trametinib), Soltrastavrin added in June due to growth of liver lesions. Both stopped in August due to growth.

September 2015, UCHealth, Dr. Rene Gonzales (cutaneous, retired), Denver, CO: 2^nd clinical trial; treatment with Yervoy and nivolumab – stopped due to GI toxicity after first treatment. 

November 17, 2015, Sky Ridge, Dr. Charles Nutting, Lone Tree, CO: Radio-embolization to the right lobe, good response. This treatment is FDA approved for metastatic colon cancer, but we were able to get insurance to approve it for me (it stabilized my liver for 3.5 years). We left the left lobe untreated so we could have a baseline for future treatments.

June to August 2016, UCHealth, Dr. Rene Gonzales, Denver, CO: 3^rd clinical trial; Glembatuminab – stopped 8/16 due to tumor growth (right lobe one lesion + left lobe).

September 2016, Sky Ridge, Dr. Charles Nutting, Lone Tree, CO: Radio-embolization to the left lobe, good response.

May 2018, UCHealth, Denver, CO: Gamma Knife for brain lesion, good response.

June 2020: Sudden growth in tumors in the liver.

July to September 2020, UPMC—Pittsburgh, Dr. Udai Kammula, Pittsburgh, PA: Laparoscopic tumor removal, leukapheresis, chemo, TIL infusion, IL2, good response.

September 17, 2021, UPMC—Pittsburgh, Dr. Udai Kammula, Pittsburgh, PA: surgery to remove remaining tumor and cleared all margins to be NED (no evidence of disease). Whoop!

With my news this past week about my cancer spreading to my brain, I’ve been taken back to the initial days of my diagnosis. There are plenty of parallels, so I thought I’d share these tips. I continue to remind myself that people mean well, even when they say really stupid things, which is inevitable. Knowing what to say to someone who has just been diagnosed with cancer is not easy, even if you have cancer yourself! The trickiest part is navigating the person and their caregiver. Some people are really open, others are very private. In my case, I’m very open, but my husband is very private (just trying to keep you all on your toes!).

Here are some general universal tips. Some of these themes parallel my Top Ten Tips for Dealing with a Cancer Diagnosis.

1. Don’t tell someone about all the people you know who died of cancer. Please. To the guy at the post office in 2014 who overheard me on the phone with my therapist and decided to strike up a conversation with me after my call: I DON’T WANT TO HEAR ABOUT YOUR MOM, DAD, GRANDMA, GRANDPA, OTHER GRANDMA, UNCLE, COUSIN, FRIEND AND DOG WHO DIED OF CANCER. Nope. Not interested at all. If it’s not providing comfort, zip it.
2. Do tell them about the survivors you know. In my case, especially stage 4. I get nervous when someone says, “You know, my dad had Stage 4 cancer…” Really? And he died? “That was 23 years ago, and he’s still alive and kicking.” I LOVE YOUR DAD, PETER. I can’t get enough of this. My friend Lauren texted me about a woman named Esther who lived 20 years with uveal melanoma brain mets (like me) and died last year of totally unrelated health complications. I’m being serious when I say I want to tattoo Esther on my right wrist.
3. Don’t tell them what to do. A cancer patient has a lot on his or her plate. They don’t need you to add to it. If you have a recommendation, suggest it. “My sister read a book called Radical Remission and said that it really gave her hope in her fight. I’m going to send it to you. Please know that I won’t be collecting a book report and understand if you never read it.” versus “YOU HAVE TO READ THIS BOOK!”
4. Think of unique gift ideas (one day I’ll do a post on this): Organize a meal train. Send money to put toward self-care like reiki, energy healing, massage and acupuncture. Take her to get a pedi. We received a lot of plants in 2014 when I was initially diagnosed and honestly, the idea of keeping them (along with myself) alive, overwhelmed me. However, we currently have seven alive plants at home (winning)! Offer to take him or her to a movie or give a gift card to the theater (I went to SO MANY movies when I was first diagnosed – it was the only way for me to truly escape the fears I was facing). This week, I made a playlist of inspirational songs for my procedure. One of my friends was so insightful to send me an iTunes gift card. Thanks, Bridget!
5. Consider starting a GoFundMe page (or other fundraising site). The etiquette is that it should be started by a close friend/non-immediate family member. Make sure to get permission first, at least from an immediate family member. Even if it’s not likely that the person will incur medical expenses, the extra money can go toward travel to appointments or flying in loved ones.
6. Send encouraging texts/voicemails/cards, but don’t ask open ended questions and don’t get your feelings hurt if you don’t get a reply. People don’t know what to do or say when someone is diagnosed, except for the asshat at the post office apparently. But we still want to know you’re thinking of us. Even a text that reads, “Thinking of you, here if you need me. No need to reply.” Don’t say, “Heard the news. How are you doing?” How do you think I’m doing? Emojis and GIFs are great. Even better, snail mail. I got so many cards in the beginning. I loved hearing from family members to my stepmom’s sisters to my cancer survivor friends. Snail mail is underrated. Never forget that.
7. Just don’t ask questions in general. “Do you have to get radiation? It sucks.” “Are you going to lose your hair?” These are examples of actual questions people asked me after my diagnosis. There’s the diagnosis, then there’s the plan. When we’re in between the two, it’s the scariest part of the process. My radiation therapy on my left eyeball left me 100% blind in that eye. In the beginning, we didn’t know if it was temporary or permanent. Every. Single. Day. People would ask, “Can you see yet?” I finally snapped. I WILL LET YOU KNOW IF I CAN SEE! I will also let you know when I get my scan results and when I know of my treatment plans. Trust that the cancer patient is not intentionally withholding information from you. And if they are, that’s okay. It’s not about you. See #8.
8. Don’t make it about you. A dear friend of mine really struggled with my initial diagnosis and would make comments like, “I need you to let me go to New York with you.” I had to call her and tell her, “I can’t have you telling me what you need right now.” I love her dearly, and I know she was hurting because she loves me so much. We’ve since talked about this over tears and wine. It was a difficult time for everyone. Make the patient aware that you are there when they need you, but keep your emotions in check.
9. Keep up with CaringBridge (or whatever means the patient is using to keep everyone informed). It seems that sometimes the closest people to me think this does not apply to them. They might see me weekly or daily and think, “I’ll just get the scoop when I see her.” Please, keep up. My siblings and I put a lot of effort into my CaringBridge posts so we don’t have to repeat ourselves. It’s exhausting reliving the detail of a painful procedure.
10. Be direct in how you want to help. So many people say to me, “Let me know what you need” or “I’m here if you need anything.” I don’t always know what I need. My friend Shayne text me and Nick last week, “Hi guys! I’d love to bring over some dinner and groceries for you tomorrow. Would that be okay?” Umm. Yes! What a brilliant idea. By all means! I complimented her on her direct outreach. She learned it from Sheryl Sandberg, COO of Facebook, who wrote about this after losing her husband.

Unfortunately, anymore, we all know someone with cancer. I hope you find these tips informative. What else have you found is helpful [or not] in dealing with your diagnosis?

Part 1 | Definitions
Part 2 | The Medical Perspective
Part 3 | The Legal/Financial Perspective
Part 4 | Beneficiaries & Belongings
Part 5 | Conclusion: Conversations & Resources

Part 1 | Definitions

For every other 30-something year-old I know, the hypothetical scenarios of getting your affairs in order are just that. Very hypothetical. But whatever age you are, even if it is just hypothetical, nothing makes having the conversation about death with loved ones easy. For me, it’s very real. I am, after all, living with a rare form of stage 4 cancer.

From my experience, having these conversations with my husband has been extremely painful. Partially because it has been over two years since my friend Julia offered to do my Will. After our first meeting, we confirmed it made sense to have Nick do his at the same time. She generously offered to do that, too.

My dad is a doctor. Wills were dinner table topics growing up. When my mom was diagnosed with pancreatic cancer, there were no unknowns around her wishes for end of life care. After she passed away, my dad remarried a nurse anesthetist. The dinner table topics of blood, stool colors and consistencies, death and nasal congestion continued. This was my normal. In my 20s, my dad and stepmom had all six of us kids sign an Advance Directive and email it to them.

But for Nick, as my friend Meagan put it best, “British people just don’t talk about that kind of shit.”

She would know. Her husband is from Scotland.

Nick has dragged his feet, and it has been one of the few points of contention in our marriage. While I’m thinking, “It’s inevitable, we are ALL GOING TO DIE, for *^&%’s sake,” he is not wanting to dwell on death. I do not fault him. And I certainly recognize my situation does not make things any easier.

The more I talk about it with friends, the more I realize Nick is not alone. I’ve also noticed there’s a lack of understanding around Wills. One friend, a fellow stage 4 cancer fighter told me, “I don’t need a Will, I don’t have any assets.”

She was unaware of Living Wills and Medical Powers of Attorney. In this 5-part blog series, I will address Definitions, the Medical Perspective, the Legal/Financial Perspective, Beneficiaries & Belongings, and Conversations & Resources.

I wrote this piece to educate others (and myself!) on the topic of Wills and to urge everyone to get something in place. You’ll find some resources available in my fifth installment, including incredible lawyers in Colorado, Nebraska, Minnesota and England.

Bud Hammes, a medical ethicist at a La Crosse, WI hospital, sparked a movement in his town that led to 96 percent of people who die having an Advance Directive. The NPR article notes that about 30% of adults nationally have this documentation in place.

Let’s start with some definitions to clear the air.

Will

The Will is the document that tells everyone what you want to have happen with your personal items (think personal property, real estate, all your assets and debts). If you have kids, this is where you establish your children’s guardian(s) should anything happen to you and your spouse (if you’re married). This is also where you set up what you would want to have happen with your money if you died (for example, creating a Trust for your kids).

Advance Directive

There are two types of Advance Directives: a Living Will and a Medical Power of Attorney (or Durable Power of Attorney for Healthcare). These are complimentary but slightly different. Some people have one or the other or both.

Your Living Will tells your doctors and friends and family what you want to have happen for end of life care. For example, if you were to get into an accident and end up in a persistent vegetative state (life support), this outlines your intentions. If you don’t want to have artificial means prolong the dying process, you’re giving your family permission to “pull the plug.” You can specify how long (days, weeks), if at all, you would want to stay on life support. This is also where you state preferences for resuscitation (whether or not you want CPR, for example).

In the state of Colorado, you do not need a lawyer to have a Living Will. It is made legal by your signature and the signature of two witnesses. It’s important to share this with your healthcare provider(s) – if you’re me, you have more than one!

Your Medical Power of Attorney (or Durable Power of Attorney for Healthcare) is who you appoint to make healthcare decisions for you if you’re no longer able to make them for yourself (for example, comatose, memory loss, brain hemorrhage). Some people select a friend or a family member in the medical profession. Some family members who tend to be emotional may find the task a huge burden. It is essential that you discuss with your appointee how you feel about end of life issues.

For me, I selected both my husband and my dad. If ever a difficult decision must be made on my behalf, I do not want either of them carrying that burden alone.

Durable Power of Attorney

Your Durable Power of Attorney is your financial power of attorney. For example, if you’re in a coma, this person can pay your bills for you. This extends beyond a health crisis. If you’re closing on a house and out of town, this person can attend the closing on your behalf. Lucky for them!

Trusts

A Trust is created for several different scenarios, including for kids and families. Some people choose to set up a Contingent/Testamentary Trust which is only created if needed (both parents die, for example). You do not have to fund a Contingent/Testamentary Trust up front.

The next section is Part 2 | The Medical Perspective.

This past Thursday, I exposed myself, warts and all. Literally.

I first learned about House Bill 1032 – Comprehensive Human Sexuality Education from a dear friend whose conservative friends were all up in arms about it. I asked her, “Did they wait until their wedding nights to have sex?”

“No, they both were sexually active in high school.”

Neither got pregnant or an STD. Lucky for them. Not all of us have had it so easy.

Sex education is not a requirement to graduate in Colorado so schools can choose to not teach it at all. The bill is an if/then scenario. If you are going to teach sex ed in your school, then it needs to be comprehensive, meaning it must include healthy relationships and consent, LGBTQ, pregnancy options including adoption and abortion, birth control, and STDs. It reinforces an already existing ban on abstinence-only sex education. Parents will be notified when sex education classes are coming up so they can choose to prevent their kids from participating. I encourage you to read more on the bill because there is far more to it than I can include in a blog post.

This bill hits close to home for a lot of reasons:

• I have several friends who have been sexually assaulted, one as young as 5-years-old.
• I can’t count how many amazing people I know and love from the LGBTQ community; I am aware of multiple suicide attempts by young LGBTQ who were misunderstood.
• I adore my niece and nephew who were adopted.
• I have to use birth control because my husband and I are not able to start a family.
• In my 20s, I contracted an STD. As a Virgin.

You read that correctly. For years, the STD (warts, a form of HPV), hung on for dear life to my lady parts to the point that I had to undergo laser surgery. It was the most horrifying, shameful experience of my life. I kept it a secret from most of my closest friends and family.

When I learned of this bill, I knew I needed to finally tell my story.

My friend Sarah’s organization was involved, and she helped me get connected to testify for the bill in the Senate Health and Human Services Committee. She and my brother Chris helped me edit my testimony.

I arrived around noon on Thursday and checked in as a proponent of the bill. I was given a pink, laminated piece of paper with the number 21 on it. I settled into the overflow room across from the room where the testimonies were being heard.

The hearing started at 1:30, and 213 people were set to testify. I knew it was going to be a long day.

Panels of four, alternating proponents and opponents of the bill, took turns telling their stories.

It was fascinating.

A transgender student said, “Without comprehensive sex education, I would be dead with a gravestone with a name I don’t recognize.”

I cried when a 15-year-old lesbian girl talked about how she tried to take her life and landed in a mental institute for four days because she didn’t understand who she was. My heart went out to the Christian mom of a transgender 20-year-old who shared that she and her husband were completely ill-equipped to understand their daughter for years due to a lack of education.

I was floored by the man who claimed we’d become Nazi Germany or modern-day Venezuela if this bill passed. And the man who vehemently stated HIV can spread through sneezing.

I was particularly taken aback by the persistence that abstinence-only sex education is the only way to go.

Because that is what I was taught. And look what happened to me.

I was nervous to tell my story because as my brother-in-law Nick pointed out, “Good luck going on public record talking about your vagina.”

My dear friend and neighbor Angela came to support me, as did Sarah. Having both of them there gave me the courage I needed to follow through with it. My name was finally called at 9 p.m.

Here is the video of my testimony and the script below.

My name is Katie Doble; I am representing myself in support of House Bill 1032. Thank you for listening to my story, one that I thought I’d never tell a soul, let alone public record.

Growing up in a Catholic family and in junior high my so-called sex education was abstinence. And I swore to stand by that.

When I was 15, my mom died of cancer before we could have more conversations about sex. By senior year, half my class was sexually active. I wasn’t because I’d never had sex. But I’d had oral sex. Another misstep in my education. My boyfriend and I never even talked about having vaginal intercourse. Sex felt like the only piece of my innocence I could control.

When I went to college, I wore my v-card proudly. That did not stop me from doing everything else under the sun, which included skin to skin contact.

In my mid-20s, I noticed a bump on my genitals. I saw my gynecologist and learned I had a genital wart, a form of HPV.

Still a virgin and with a serious boyfriend, I had contracted an STD.

Stupid, Katie. DUH. Insertion does not need to happen for an STD to spread.

The shame and embarrassment that ensued was debilitating.

The wart, which is typically burnt off and gone, wreaked havoc on my lady parts to the point that I had to have SURGERY on my vagina.

The warts continued to pop up after my surgery. It wasn’t until working with a therapist that they finally went away. It then took me a couple years to regain my confidence and start to shed the immense shame that had blanketed me for four years.

When I think of sex ed now and reflect on my own painful experience, it angers me to know what a disservice is being done to young people by not equipping them with the truth. Sex is not just about procreation.

As an example, I still have an IUD because I am battling stage 4 cancer and physically cannot get pregnant. My husband and I still make love even though we’re not able to start a family right now.

I would have saved myself a world of heartache had I been better educated. Telling a child “just don’t do it” is in no way educating them. Aren’t we, as a society, better off if we allow our youth to understand the truth? I sure wish teenage me would have been entrusted with more information. Let’s not allow this to happen to anyone else.

After the fourth person on my panel finished speaking, one of the senators told me I was very brave to share my story. I stood up to head to the back of the room and a woman in the front row mouthed to me, “Thank you.”

Sarah said everyone around her was commenting on my testimony and how brave it was. I believe I was the only person to speak first-hand of having an STD. We grabbed our coats and the same senator, Brittany Pettersen, met me outside and gave me a very long hug and thanked me again. After meeting her then learning more about her background, I am a forever fan.

I learned the following morning the bill passed the committee with a 3-2 vote. Next it goes onto the full Senate vote, where Democrats hold a narrow majority.

It was a far more emotional experience than I expected. Cancer has made me fearless, and I am pleased to have the courage to finally share this piece of me so that another young man or woman hiding this secret can shed the shame and know he or she is not alone.

If you live in Colorado, please contact your representative to voice your support of this bill so no other young person has to endure the humiliation I did.

If you’re a parent, PLEASE talk to your kids about sex. All of it. My friend Meagan put it best, “My mom always said, if I was old enough to be asking questions, I was old enough to hear the truth.”

I’m on a constant quest for healing alternatives. Sure, I see my Western medicine doctors and trust their treatment plans. But I don’t stop there. It’s why I started this blog – to share my findings. It started with the Nutribullet®. I’ve written about learning how to say no, planning to die, and dealing with a cancer diagnosis. This post is long. But it’s about an incredible doctor who opened my eyes to the power of healing. When I reflect on my journey with cancer, Dr. Carriere is one of the most influential doctors I’ve encountered.

In 2015, I lost 30 pounds. For those of you who know me, you know I didn’t really have 30 pounds to lose. I was flirting with the double digits – numbers I hadn’t seen on the scale since junior high. My trial at Memorial Sloan Kettering (MSK) kicked my butt. By the time I was on the second arm and taking two pills every morning, I had completely lost my appetite, something I’d never experienced before. I tried force feeding myself. I tried gummies. Nothing stimulated my appetite. I had also developed a dairy intolerance. I was running out of options and my clothes were hanging off me like a little girl playing dress up in her mom’s closet.

During a college reunion trip to MN that summer, my dear friend made dairy-free french toast for her twin daughters. It actually sounded and smelled good to me, so I asked if I could have some. They were delish. Feeling satiated was foreign to me. I was in heaven. Then I lived on french toast for the next several weeks.

“You can’t just eat french toast,” my husband Nick urged.

“Well, it’s that or I don’t eat!” I replied.

I later learned from market research of more than one cancer patient that french toast is evidently a universal meal for those with lost appetites. Who knew?

This whole post goes to show the journey cancer patients are on. I had known I needed to do something for a while, but when you’re flying to New York City every month for your “drug deal,” you really don’t have the bandwidth to explore more than the flights you are booking. When I got booted from the trial at MSK, I finally had the headspace to dive in to something beyond travel logistics.

My appetite also came back with a vengeance, and I was thrilled to be able to eat anything again, including dairy. I became the envy(ish) of all my friends. I was on a mission to gain weight. It was GLORIOUS. I lived on donuts and milkshakes daily. I knew deep down that I wasn’t doing my body any favors, but I decided to enjoy it while I could. And my friends weren’t that jealous. My care-free calorie consumption came with a price.

After my successful liver embolization procedure by the amazing Dr. Charles Nutting, I met with him in his office for a follow up visit. I explained to him that I was struggling with my diet. I knew I needed to be making healthier choices, but my willpower was non-existent when it came to food.

Few doctors throughout my treatment have discussed food with me. NONE have brought it up before I had the chance. Several have dismissed my inquiry saying, “Continue to eat whatever you want. You don’t need to worry about food.” Perhaps they were under the false assumption that I ate healthy because I was petite? Boy were they wrong!

Dr. Nutting listened and suggested I meet with a peer of his, Dr. Ed Carriere, based in the Denver Tech Center. Dr. Carriere combines Eastern and Western Medicine. He made me promise I’d go see him.

Word to the wise, if a doctor you trust makes you promise to do something or see someone, do it.

The last time a doctor made me promise to see someone, it was my gynecologist recommending a therapist who changed my life. I trusted Dr. Nutting with my life (no seriously, he saved my life), so this was a promise I wasn’t going to break either.

My dad is an internist as many of you know; I refer to him as my agent. When I’d bring up food to him, he was in the same boat of the other doctors, “Continue to eat whatever you want. You don’t need to worry about food.”

My appointment with Dr. Carriere was booked for the Monday morning after Christmas. That afternoon, I had a follow up appointment from my latest scan with Dr. Gonzalez at University. My dad wanted to go to the appointment with me.

I thought, He’ll spend Sunday night at my sister’s house, and I can pick him up later in the morning.

“Kate, why don’t I just stay with you?” he suggested.

“Uhhhhh, yeah, sure,” I hesitated.

He sensed my reluctance. I explained that I had an “appointment” in the morning.

“What’s your appointment?”

Here goes. “Well, dad, Dr. Nutting suggested I talk to this doctor who combines Eastern and Western medicine about my diet.”

“Interesting! I’d really like to go to that!” he replied enthusiastically.

Then, we had a total role-reversal as I told him, “This is really important to me, and I do not want to hear a peep out of you. No sighs, no eye-rolls, understand?”

He obliged. Nick suggested later that I go easy on him because that wasn’t the last time I gave him that speech.

Nick, dad and I went to see Dr. Carriere the following morning.

Dr. Carriere’s Background

Dr. Carriere was traditionally trained as an internist and a hospitalist for about 18 years. What he found over the course of time was that he would keep seeing the same people over and over again. He began to feel like he wasn’t really helping people. Then, six years ago, he was diagnosed with cancer and an autoimmune condition. He started to wonder, as we all do, “Why did I get sick? What am I doing wrong?”

So in his early 50s, he went back to school for an Integrative Medicine Fellowship Program with two years of study at the University of Arizona School of Medicine under Dr. Andrew Weil. It was here he realized that diet and lifestyle have a huge impact both on acute and chronic disease processes. Dr. Carriere believes it’s all about inflammation and immune function. He realized that probably 95% of chronic conditions, including cancer, have a huge dietary and inflammatory component.

Of course, throughout his learnings, he was comparing to the Western medicine he knows so well. Western physicians tend to want to kill, burn, or cut whatever the cancer is. In his new studies, he was realizing if we grew this cancer in our bodies, why can’t we heal it versus cutting it out?

Dr. Carriere started to shift his perspective and teach his patients that fear, nutrition and antioxidant function, mental visualization, supplements, exercise, hydration, and so much more have a huge impact on our ability to heal. He believes stress is a major impact factor. You cannot simultaneously be stressed and heal. Our bodies are not designed that way.

Dr. Carriere works to get his patients to realize that the way they are living is killing them – stress, diet, lack of physical activity, bad attitude, pyscho-social-emotional stress they are keeping and not letting go of. Auto-immune diseases are skyrocketing and chronic diseases are overcoming our healthcare system. When he does a lecture series, one of his first slides is a picture of his children, and he tells people, “My children are the first generation in history to have a shorter life expectancy than I do.”

The Fear Factor

During our first meeting, Dr. Carriere explained, “We are designed that we have a fight or flight mechanism and two different healing mechanisms. One is called an innate immune response, where we see a problem and we attack it. The other is called learned immunity or B-cell function where we are exposed to something and our body learns to create antibodies to it. Those two systems get shut down in the setting of acute stress. If a tiger is chasing you, your body doesn’t care about that virus or that bacteria or that infection, it has to get away from the tiger. You can’t simultaneously be under stress and heal.”

Well that’s all fine and dandy. But cancer causes stress (just a little, I don’t want to seem dramatic), so don’t we end up in a vicious cycle?

Yup. Dr. Carriere validates that the fear of the cancer causes more stress. The first thing he tells people is when you go to most physicians and they tell you have cancer, you’re given statistics or probabilities. He explains that statistics are for populations, not for individuals.

Statistics are based on that type of cancer with a kind of traditional therapy. Statistics do not take into account individual physiology and all the things an individual is doing to help heal the cancer with diet, lifestyle modification, exercise, stress reduction, increasing antioxidant function, and revving up the detoxification process.

“Stats are shit.” That’s my classy take on statistics, coming from a girl who was told there was a less than 2% chance of metastatic disease. But now, I’m on the other side, against the odds in a positive way. So really, when newly diagnosed cancer patients start talking numbers and probabilities with me, I tell them what I learned from Dr. Carriere. There is so much more we can be doing to improve our chances.

Dr. Carriere works with patients to decrease their fear. Something creates our cancer – it could be something we’re doing to our bodies or being exposed to or an emotional trauma. For me, I believe emotional trauma has played a key piece in my cancer diagnosis, along with many other things! Adults who experienced emotional trauma as a child have a significantly higher risk of developing cancer. Emotional traumas are stored as memories which is why people have emotional responses to massage therapy or guided imagery sessions. They are releasing these memories. Dr. Carriere feels one of the most important things in healing is trying to identify emotional traumas and working through them through whatever means possible. It’s why I go to therapy and do energy healing. More on that in another post. Dr. Carriere believes cancer is your body’s way of saying “You need to do something. Wake up. Change.” No doubt my body was SCREAMING that to me when I got my diagnosis.

Dr. Carriere approaches cancer from a healing process versus a destroy it/cut it out process. He acknowledges each one has their place but believes our bodies are designed to heal. I loved to hear him say this, “Every cancer out there, someone has survived and healed and gone through – be in pancreatic cancer, be it brain cancer.”

I remember meeting a 5-year pancreatic cancer survivor in the elevator at MSK when I was first diagnosed. My mom died of pancreatic cancer 21 years ago. I know she had a hand in delivering that message of hope to me.

Visualization / Guided Imagery

One of the exercises Dr. Carriere had me do during my first visit was visualization. He asked what one of my dreams was. My dream, at the time, was to one day stand on the Cliffs of Moher in Ireland with my love, Nick. He asked me to picture myself 10 years out, doing this exact thing, daily. In 2016, I realized this dream.

Dr. Carriere never believed in guided imagery until, as part of his fellowship program, he participated in a guided imagery session by Dr. Belleruth, who designed a whole guided imagery for PTSD for war veterans. As he sat through the session, about ten minutes in, he thought, “I’m going to cry.” At fifteen minutes, he was bawling uncontrollably and had to get up and leave.

He returned to the session and when it ended asked the question, “What if you’ve never been to war, never been abused that you know about?” Dr. Belleruth responded that it’s perfectly natural. Responses like that may be caused by one thing or maybe 1000 little things in your system. Dr. Carriere realized, “It’s not important what it was. It’s important that you had this catharsis that releases that starts the healing process.” He thinks it’s very important and recommends guided imagery for many things. You may notice a significant response, you may not. But it’s all a process of healing. There are free podcasts online.

Dr. Carriere has taught me to picture myself doing something I love with the people I love 10, 20 and 30 years from now. My visualization now includes standing in front of a crowd telling my story. In addition to that, I visualize drinking a beer with my nephews and niece on their 21^st birthdays, seeing them graduate, and dancing with each of them at their weddings. I see my hubby and me, with our gray hair, being babus (something only he would understand).

Dr. Carriere says what we know about neuroplasticity and the way our brain works is that the more we think about something, the bigger those pathways become in our brains.

Our minds control everything. If you’re always looking for the bad things, then the bad things will come out. But the more you think about the good things and see yourself, your body learns and those neuropathways become stronger and stronger. And you become more resilient. And that’s the key with fighting anything or healing from something – to become more resilient.

Nutrition

In my first meeting with Dr. Carriere, he gave me homework. He talked about a book called The China Study. I was to read it before our next visit. The book supports a plant-based diet. When we got into my car after that first meeting, my dad asked, “What was the title of that book again?”

Two weeks later, I received an email. My dad, for the record, is a life-long learner. I was in no way surprised that he picked up the book. “About half way done with The China Study. Very compelling. I’m afraid I’m too old to change my ways, but I sure think more about what I eat!”

The China Study is a landmark book in Dr. Carriere’s opinion. He recommends others that I listed at the end of this post. He explains that the amount of processed foods that we’re ingesting are significantly promoting inflammation in our bodies. Our society is eating a high percentage of commercially raised and processed beef that is grilled, charred, and burnt at high temperatures, all of which creates HCA (heterocyclic amines) and PACs (poly aeromatic hydrocarbons), which are carcinogenic. Don’t know what that means? It means having the potential to cause cancer. Everything we know about “red” meat applies to chicken, pork, and what you’re buying at the deli. Dr. Carriere explains that it may not be the actual animal that’s bad for you, it’s how we’re raising it. We are feeding them corn, antibiotics, hormones, all of which make it pro-inflammatory.

The average commercially raised beef product has a 6:3 ratio of about 20:1. The 6:3 ratio refers to omega 6s and omega 3s. Dr. Carriere says an ideal ratio is about 5:1. That’s 5 omega 6s to every 1 omega 3. Animal product such as wild game and grassfed beef ratios are about 3:1, which are not so bad. I learned in Ireland during my visit a year ago that a farmer would literally do jail time if he or she raised meat the way some Americans do. Think about that. Dr. Carriere stressed that we are ultimately lacking whole foods that are high in antioxidants, specifically fruits, berries, and cruciferous vegetables. If he would have tested my 6:3 ratio when he first met me…oh boy.

Dr. Carriere urges his patients to eat local and seasonal. This is hugely important. In addition to getting his patients to understand the value of how the animals are grown, he educates on environmental toxins, chemical cleaners from the house, pesticides, herbicides, grilling things. It goes on and on.

Another thing Dr. Carriere does with his patients is look at the types of fat in their body to try to adjust that ratio as it’s directly proportionate to inflammation. We don’t know that inflammation causes cancer, but Dr. Carriere believes it definitely propagates it. It also causes pain. There is a clinical study now linking these fat ratios with propagation of breast cancer and prostate cancer. And he believes that eventually we’ll see other cancers come in line as well.

For me, The China Study finally gave me the willpower to overcome my temptations. We all know what’s good and bad for us. The trick is getting to the store frequently to buy fresh produce. It’s pulling that celery out of the fridge to juice when pouring a glass of wine is so much easier and tastier. I’m far from perfect. And The China Study was a little more scientific than my mind works, but it helped me tremendously to remember why it’s better for my body to make the healthier choices. If you’re struggling to opt for the apple when bacon is present, give this book a go. Bottom line though, if you don’t want to be tempted by it, DON’T buy it at the store! And if it’s processed, think twice about getting it.

Supplements

Dr. Carriere supplies his patients with objective data. He looks at autoimmune panels and micronutrient profiles to explain where the patient is and where they need to begin. An example he gives to explain essential nutrients is that the nutritional value of the orange today is not what it was twenty years ago. You have to eat eight oranges now to get the same vitamins you got eight years ago. For every day your plant is off the vine or out of the ground, you start losing minerals and anti-oxidant functions. By eight days out, you may just be getting the fiber.

For me and most of his patients, Dr. Carriere recommends supplements based on deficiencies in the blood work. There are multiple reasons he finds supplements beneficial. The nutritional value of even organic vegetables is not what it used to be. Objectively, there is clinical data that shows that even people who think they are eating healthy, have significant deficiencies that need to be addressed.

Then there’s the toxic load we are exposed to through radiation (ultraviolet radiation, electromagnetic radiation), endocrine disrupting chemicals in our environment (pesticides, herbicides, plasticizers) and other environmental stressors. Our immune system and ability to detoxify is getting maxed out, some people more than others. Dr. Carriere doesn’t think we have the innate capability to keep a balance. Supplements help us do that.

One of the problems with supplements is that half the stuff out there is crap and, according to Dr. Carriere, a sub-portion of that crap is actually harmful. Unfortunately, the supplement industry is unregulated. He trusts labs that have a third-party analysis. Per his recommendation, I’ve been buying primarily Pure Encapsulations supplements for the past three years. I don’t trust supplements from Walgreens, Target, etc. Be sure to check the ingredients label to see what fillers are included.

Here are other things that Dr. Carriere recommends:

1. Buy a water filter. Drink filtered water out of a stainless-steel glass and eliminate as much plastic as possible.
2. Eliminate commercial cleaners in your house. I use Young Living Thieves
3. If you’re going to use the microwave, heat your stuff up in glass.
4. “Live dirty, eat clean.” Don’t over sanitize yourself. You don’t need to shower every day. Play in the dirt. Live outside, ground yourself. Walk barefoot. There is data supporting natural rhythms and the earths electromagnetism that you can lower your cortisol by walking barefoot thirty minutes per day. Maybe that’s just the walking? Regardless, stay outside as long as possible.
5. Find your tribe. Support groups, family dynamic and tribe mentality provide so much benefit for decreasing cortisol and giving your body the ability to deal with stress. Surround yourself with people you love. People are the most important things out there. That’s what we’re here for.

Dr. Carriere credits his wife Tracy for “pushing, pulling and dragging him out of his closed minded pharmaceutical driven allopathic training into the light of ‘everything else out there.’” He believes everything happens for a reason, as do I. Some might call that ignorance. I see it as a way to stay positive. Think of all the anger I’d experience if I questioned my cancer daily. Instead, I learn from it. I see the silver linings it provides. Dr. Carriere agrees. He’s not sure he’d be practicing the way he is if not for his diagnosis. And he’s thankful for that.

“My cancer changed my life, and I am eternally grateful as it has put me in a unique position to challenge conventional wisdom and dogma, and to continually educate myself and my clients as to the personal nature of disease. The power we have over everything in our life, the power to heal, the power of love, and the power of gratitude and positivity,” he said as we ended our time together.

My favorite thing Dr. Carriere said when I interviewed him was the importance of celebrating.

Celebrate. Celebrate life. Celebrate the fact that you are overcoming whatever it is you are trying to fight. If it’s cancer, if it’s diabetes, if it’s whatever, that you’re doing it. Reinforce that.

So I celebrate. I celebrate big. I live dirty and eat clean. I take my supplements. And I visualize. I visualize the life I want to live and that way I want to feel.

_____________________________________________

If you’re based in Colorado and battling any chronic health issues, especially advanced stage cancer, I highly recommend a visit with Dr. Carriere. We both believe every person we encounter is meant to teach us something, we just have to be open and listening. I’m grateful to the amazing Dr. Nutting for introducing me to Dr. Carriere. He’s a true gem. He’s helped me shift my perspective and see the power I have to heal my body.

Edward W. Carriere M.D.
Chair Department of Medicine @ SkyRidge Medical Center
Integrative Medical Consultants
Denver Tech Center Office
99 Inverness Drive East, Suite #100
Englewood, CO 80112
Phone: 303-577-1900

Here are books recommended by Dr. Carriere, some available on Audible:

• The China Study, T. Colin Campbell
• Radical Remission: Surviving Cancer Against All Odds, Kelly A. Turner (If you’re advanced stage, this is a must read, IMO.)
• How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reverse Disease, Michael Greger
• The Microbiome Solution: A Radical New Way to Heal Your Body from the Inside Out, Robynne Chutkan M.D.
• Eat Dirt: Why Leaky Gut May Be the Root Cause of Your Health Problems and 5 Surprising Steps to Cure It, Dr. Josh Axe
• The Complete Guide to Fasting: Heal Your Body Through Intermittent, Alternate-Day, and Extended Fasting, Dr. Jason Fung
• Tripping over the Truth: How the Metabolic Theory of Cancer Is Overturning One of Medicine’s Most Entrenched Paradigms, Travis Christofferson
• The Biology of Belief 10th Anniversary Edition: Unleashing the Power of Consciousness, Matter & Miracles, Bruce H. Lipton
• Anticancer: A New Way of Life, David Servan-Schreiber MD PhD
• Cancer Is Not a Disease – It’s a Healing Mechanism, Andreas Moritz
• Mind Over Medicine: Scientific Proof That You Can Heal Yourself, Lissa Rankin

That one time, when my cancer spread to my brain after a series of migraines and a sudden onset of stroke-like symptoms, and we had to postpone our trip to England to see Nick’s ailing father so that I could have gamma knife to my brain tumor right after babysitting all five of my sisters’ kids for a weekend, with my dad’s help, and we flew to NYC to see a specialist and learned we had a window to get back to England before my next scan, so we hopped a flight just in time to spend a week with Nick’s family, and his dad lost his battle to lung cancer the day after we returned home, the day before my seeing eye developed a corneal ulcer and I lost vision, making Nick a seeing-eye-spouse for three days, and thankfully my vision returned, albeit a little damaged, in time for us to fly back to England for his dad’s funeral two weeks later.

That time? Yeah. It’s feels like that now. My life is on hold, and I’m in survival mode.

Except instead of being on 10 airplanes in a month’s time, we are literally grounded. Like in high school. Except instead of missing curfew and deserving this, none of us are to blame. And instead of having complete FOMO because all of our friends are at that epic house party, we’re all in the same boat.

Time is standing still in the middle of mass chaos (unless of course you are a medical or public health professional…or a liquor store clerk).

My word for 2020 is gratitude. I started The Five-Minute Journal, sent to me by another cancer survivor. Someone told me today, “Gratitude and abundance are on the same frequency.” And if you’re still skeptical about the effects of gratitude, ask Harvard.

Times are scary. Yes. But instead of looking to the future and freaking out, be present and find things to be grateful for.

I started this year filled with anxiety every time I looked at my calendar. Don’t get me wrong, I was looking forward to everything on it. It was just a lot. In March, I was supposed to be speaking at an event. In April, I had another speaking engagement. In May, we were flying to England for Nick’s brother’s wedding. In June, we were flying to my brother’s wedding in Cabo. I was volunteering for a First Descents trip in August. We had a tentative trip to Portugal in the fall.

So in January and February, I took it easy. I said no to things I normally would have said yes to. Hello regret. My name is Katie. March and April are basically cancelled. And who knows what May and June and even the fall will bring.

COVID-19 has taught me a lot. It’s reminded me of my journey with cancer when there are times I am living three months at a time and there are moments I am living hour by hour. Right now, we as a society are living one day at a time. And no. None of us are in control. We never really are. This will pass. We will be able to make plans again.

But when that time comes, I will no longer look to the future with concern. I will simply live each day for what it is: a gift. I will say yes to the things that align with my life dreams.

Until then, I will continue to practice gratitude. I call the silver linings of cancer #CancerPerks. I’m now looking for #CoronaPerks, which include spending 24/7 with my husband and dog (this is the best thing that has ever happened to her), getting out for long walks to enjoy the fresh air, finally getting to the projects I’ve been eyeing for years, virtual happy hours catching up with dear friends, and for the first time in my life, not over committing.

May you find peace and gratitude during this time. And when this lifts, may you say yes to the things that align with your life’s desires.