Tips from Oncology Nurse and Dr Martin Inderbitzin from ‘my survival story.’

I would love to connect on Instagram, where I share all kinds of useful tips.

Cancer is not a death sentence, no matter how advanced the stage. No one knows the number of days you have left on this earth, no matter their credentials. No one knows the number of days THEY have left on this earth! I have seen some wild stories: an 80 year old woman who was told she had 6 months to live… 40 years ago!

That being said, a cancer diagnosis puts you in a unique position to think about your mortality and what is TRULY important to you. What brings you joy? It’s time to re-evaluate your life and when you are done, I promise, what is left is going to be beautiful and meaningful.

Dr. Martin Inderbitzin is a neuroscientist and 8 year pancreatic cancer survivor. “Martin was first diagnosed with a rare type of pancreatic cancer (Acinar Cell Carcinoma) at 32 years old. He quickly realized that hearing stories from other patients helped him through his journey. ‘My oncologist told me about a young skier who has survived my disease. That story became my mantra. I thought if he’s out there maybe I can be out there as a survivor too.” He went on to found MySurvivalStory and is currently looking for patients and families to participate in his research, to help improve mindset and outcomes for cancer patients.

Martin joined the Poppie Podcast to talk about tips for surviving and thriving after cancer diagnosis. BIG ANNOUNCEMENT: You can watch our interview above or listen to the Podcast HERE on iTunes!!

Martin’s best advice for someone diagnosed with cancer? “I could add many ideas but if I had to reduce it to one it would be this: it is ok to be not ok. Many patients think they always have to be happy. I think that is BS. It is a life threatening illness and the most normal and human thing to freak. So freak out! Cry it out. Be angry or feel whatever you have to feel. Don't hold it back, give it the space and time it needs and then move on! It is much easier to start the journey without the emotional baggage, that would be my advice. “

This is my “no holds barred” list for anyone asking how to survive (and thrive) with cancer.

1. DON’T GOOGLE. “Statistics can be wrong. You are not a number because your body is not a number. Your body is made out of millions of cells with uncountable interactions that no scientist can quantify. So your body is not in the internet, neither is your future. What is on the internet, unfortunately is a lot of negative news…. I will survive until I die. And In the meantime, I will choose very wisely how I use my time. It’s much more important how I live my life than how long I live my life” - Dr Martin Inderbitzin

2. Take it with a Grain of Salt: All of it. Whatever you found on Google (because you most certainly ignored #2), and especially whatever the ‘person from your daughter’s school whose aunt healed herself from breast cancer’ said to you. All kinds of well-meaning people will give you all kinds of IDIOTIC advice. Most of it won’t make sense. Shake your head, smile, say “that’s a great idea,” and get the heck out of there.

3. Tell your family: this includes your children: Using age-appropriate terms, tell your kids the TRUTH. You may want to try to shield them from any pain, but the best thing you can do for them is to be honest. You will teach them important life lessons about being afraid and brave. This goes for your children at any age. Children can sense when something isn’t right and young children have “magical thinking,” which often means their imaginations take over and fill in any blanks with ideas that are much worse than reality. Use the word CANCER and not “sick.”

4. Appoint a Point Person: The barrage of well-meaning friends and family asking for updates is both touching and overwhelming. Appoint one person to update a private website, like the Caring Bridge. If you are worried about privacy, you can change the settings so that people have to be accepted to see your updates. Instead of responding to and copying/pasting the same update on 12 different text message chains, update everyone on Caring Bridge as soon as you are ready to share and alleviate the headache.

5. Laugh: Use any opportunity to smile. I had a patient who named her chemo infusion pump “Magic Mike” because she liked the idea that Magic Mike would be in her bed two nights every two weeks. Do what you can to pursue joy, humor, and FUN.

6. Accept Help: Every time you allow yourself to be helped, even in a small way, you are giving a gift. It takes courage and vulnerability to accept help. We don’t get many opportunities to help others we know and care for. You may find the thought of a GoFundMe humiliating, but think of it as an opportunity to alleviate some of the helpless feelings from the people you love. Write a list of practical tasks that would be helpful and anytime someone says “Please let me know what I can do to help,” assign them a task! Some ideas are a Target run, picking up dirty laundry and dropping off clean and folded clothes, picking up and dropping off kids from school, keeping your kids at their house for a play date so you can rest, etc.

7. Accept Professional Help: A cancer diagnosis turns your world UPSIDE DOWN. Most healthcare facilities employ social workers and they have the keys to the kingdom (so to speak). Ask to speak to the Social Worker and be honest with anything troubling you. They are the ‘Mary Poppins’ of resources and are there to help you. There might be a WORLD of FREE resources; from massages to cooking classes to yoga. If you’re not sure where to start, ask your physician about the resources available.

8. Ditch the bad habits: If you smoke or drink excessively (or do drugs), now is the time to find some new coping skills. It just doesn’t make sense to go in for treatment, then continue to stress your body with these toxic substances.

9. Eat The Rainbow and Be Wary of Supplements: Focus on whole foods and lots of fruit and vegetables. SO MANY patients want to load up on supplements and find something that will boost their immune system and give them an advantage against cancer. Here’s the problem (s):

   1. Your body was specifically designed to absorb vitamins and minerals from the foods you eat. It absorbs nutrients much better from diet than from supplements.

   2. As supplements aren’t FDA tested, you are basically taking an unknown when you take a supplement. Scarier is that some of them have been tested and research has shown that some supplements can DECREASE the effectiveness of cancer treatments! That is exactly the opposite of what you want.

   3. Supplements can cause harm: The book ‘Cancer as a Wake Up Call” by Oncologist M. Laura Nasi MD. Dr Nasi explains: On some occasions, high doses of vitamin and minerals may be harmful. For example, the accumulation of vitamin A and D, or of minerals such as selenium, iron, magnesium, zinc, and other compounds, may cause certain disorders. An overdose of minerals may cause vomiting, diarrhea, hair loss, and changes in skin and nails. High doses of Vitamin A may produce headaches, dizziness, irritability, vomiting and changes in skin and nails. Overdoses of Vitamin D may reduce appetite and cause nausea, vomiting, weakness and kidney disorders. In some cases, the intake of supplements increases the risk of cancer” (Nasi).

10. Eat Dessert First: Some patients and partners go on some very well-meaning (read: gross) diets. I have found that, like all things in life, moderation is key. Try to focus on fruits, vegetables, lean meats, and lots of water. Have that slice of cake. Sugar does not directly feed cancer and as long as you are trying overall to eat healthy foods; that slice of cake does more good than harm.

11. Make an Advance Directive: I don’t care if you have a precancerous mole and are 29, PLEASE make an Advance Directive. This document is not scary, but helps you work through some important decisions about your healthcare. It is truly one of the most loving things you can do for your family.

12. The Most Important Question to ask your Oncologist: “What is the goal of the treatment you are offering me?” If you are stage 4, it does NOT mean you are dying soon… in fact, you could have MANY MANY MANY more years of life left. There are new treatments being developed continuously. But it’s helpful to know if the goal is to remove the cancer entirely or to control tumor growth.

Treatment Tips:

• If you are going to have a MediPort (or Port A Cath), ask for a prescription for EMLA cream. It is a lidocaine/numbing cream and you can apply a dollop to your port site and cover with gauze for a FULL 60 minutes prior to your port being accessed to numb the pain of the needle for labs or treatment.

• If you will be losing your hair, the American Cancer Society has a free wig bank and you can also find VERY nice wigs at local wig shops that could be partially covered by your insurance (call the number on the back of your insurance card to find out). We always recommend getting a wig BEFORE you start to lose your hair, so they can see what your hair color and texture is. You can also find fun ways to tie scarves. Some patients ask if they should shave their head. It’s totally up to you, but it does start to fall out in clumps and can get quite itchy falling out on your pillow at night. It should start falling out within a few weeks of your first treatment and starts growing back as soon as treatment is stopped. After treatment is done, it will take months to get to a place where you have a short head of hair.

• There are different “Cold Cap” systems that allow you to try to cool your scalp to reduce hair loss. I have mixed feelings about them and it’s a personal choice. HOWEVER, I will say I have NEVER (not once!) seen it covered by insurance and it is VERY expensive (in the thousands). Even if used correctly, there is a chance it won’t work. It is also very uncomfortable (it’s literally freezing your scalp for hours during your infusion). YOU as the patient are 100% responsible for arranging and setting that up, not your doctors office. These are things to be aware of when researching/deciding.

• Look Good Feel Better and Sephora Brave Beauty have FREE classes to help you… well, look good and feel better;)

• After treatment is complete, men and women can try Rogaine FOAM for MEN to improve hair regrowth by 30%. The foam is lighter and more women prefer it. It’s OK to use, even though the box says men. It’s the cheapest to buy from Costco by it’s generic name, Minoxidil 5%.

• If neuropathy is a side effect of your treatment, ask your infusion nurses for a bucket of ice for your hands and feet to dip them in during treatment. Try to keep your hands and feet in the ice as much as possible throughout your infusion appointments to reduce nerve damage. You could alternatively purchase multiple sets of ice packs for hands and feet and wear them a bit before, all during, and a bit after chemotherapy, rotating pairs as they warm up. Acupuncture may also be useful for chemo induced neuropathy.

• Worried about how much treatment will cost? Ask your doctor and they should be able to connect you with a financial counselor. You can also call the number on the back of your insurance card to hear the process for finding out. .