The President of the Canadian Neuroendocrine Tumour Society reached out to me in March, asking me if I wanted to get up in front of an audience to share my story at the annual CNETS conference held in Toronto, Ontario, Canada.
I immediately thought to myself: "no WAY I'm EVER getting up there". I HATE public speaking. I've avoided it my entire life! Then I told my best friend and she encouraged me that I should do it. My husband agreed with her, and everyone that I was trying to get to agree with me that I shouldn't get up there actually told me I should. So I agreed to do it.
Thankfully I typed out most of what I was going to say a few days before we were evacuated (due to wildfires for nearly 3 weeks) because I got to go home to my own bed exactly 2 nights before flying out to Toronto!
I've been asked to share my story to an online audience as well so I'm making a readable version just for you!
Introduction:
I was born and raised in Alberta. I retired from my design career about 13 years ago to become a full-time homemaker and patient. I love learning. You’ll find me most days, with my nose buried in a book, or online article about biology, nutrition or human behavior. I enjoy singing, sewing, gardening, creating art, getting into nature with my family, cuddling with my dogs, and I like to spend my time helping others. People call me a "patient advocate" because of the many years that I have spent researching my condition and advocating for others who are beginning their journey with an MEN diagnosis. I founded the Canadian Multiple Endocrine Neoplasia Support Group on Facebook, created a blog to document my health journey, and designed a ribbon especially for those with M.E.N. I am hopeful that my presentation today will help others who are also on a journey to improve their quality of life living with a cancer diagnosis.
My family history:
We’ve traced our family history of MEN1 back at least 3 generations.
My Grandfather had MEN1, my Mom and her 2 sisters have all passed away from it, and myself and my brother have been genetically confirmed to have it, along with some cousins.
My Mom had recurring kidney stones and had high calcium. She also had something called Zollinger Ellison Syndrome, which is when the tumours produce high levels of gastrin that makes excess stomach acid. It causes extreme GERD and diarrhea.
My Mom was my hero, she always told me that “there’s always someone worse off than you”. Especially when I was feeling sorry for myself. Though she faced a multitude of challenges in her life, she never wanted pity at all. She pushed herself to be a shining example for her kids. She woke up every morning, thanking God for another day and went to bed each night saying “Tomorrow will be a better day.”
My brother started to get weird symptoms at a very early age. He said he felt dizzy. Noise and sound bothered him and eventually he wasn’t able to attend school. It took the Doctors YEARS to figure out what was wrong with him. The only thing that ever picked up his pituitary tumour was an MRI, which he finally had when he was about 11 years old.
His prolactinoma had grown so large it was pushing on his optic nerve. It was a very stressful time for our family because it took so long for them to figure out what was happening. It also affected his testosterone levels. Thankfully they were able to put him on a medication to help shrink the tumour, though it made him feel quite ill. He had his entire pancreas, gallbladder and spleen removed in 2018 due to PNETs.
My Timeline as a patient:
2005 - Kidney Stone:
By the time I started to have symptoms, I was already in my 20s. I was scared when I started having kidney stone pain. It was the worst pain I’d ever experienced up to that point.. I remember the endocrinologist telling me that my calcium levels were climbing and that I’d probably need parathyroid surgery soon. I suffered with a kidney stone for 3 weeks, trying to pass it before having to have a basket extraction. The pain from that was worse than the stone, and I decided I NEVER wanted another kidney stone EVER AGAIN and opted to have all 4 parathyroid glands removed and one transplanted into my arm, as suggested by the surgeon.
2006 - Parathyroid Surgery:
Not long after that, I was scheduled for a total parathyroidectomy and auto-transplant. The surgery should’ve been very straightforward but I woke up with a raspy voice and found out later that they had to carefully cut away one of the parathyroid glands that had wrapped itself around my vocal cord! It was a relief to me that I got most of my voice back as I love to sing! The transplant didn’t really take and the post recovery of this surgery was terrifying for me because the surgeon purposely let my calcium levels bottom out to make sure they got all the glands. I went into tetany many times over the next few days. He also didn’t put me on calcitrol, so my body wasn’t able to absorb the calcium that was crystallizing in all of my veins by IV. I was covered in bruises. It was such a horrible experience for me, and after a while my calcium started to increase again anyway. I go into more detail about this surgery in post #15 in my blog.
2006 - Anxiety / Low Calcium
After my parathyroid surgery, I had to take large amounts of calcium and calcitrol, and was having blood work done quite regularly to make sure it was being absorbed properly. I noticed that I was VERY anxious. I’d never felt that way before or experienced this before my surgery, but I was experiencing panic attacks quite often and even some episodes of hyperventilating. The hyperventilation was causing some of the tingling similar to the tetany, so that just put me into a tailspin. The trauma from the surgery was messing with my emotions but I know now that low calcium can cause feelings of anxiety as a PHYSICAL response. I’ve never experienced panic attacks or hyperventilating ever again after my calcium came up to normal levels.
2007 - Blood Sugar Issues:
It was less than a year later, in 2007, that I started to experience some new symptoms: episodes about 2 hours after eating, where I would start trembling and sweating and feeling very weak all of a sudden. My Dr. decided to do an ultrasound and CT of my pancreas and it showed a 1 inch mass in the tail of my pancreas. I was scheduled for a 3 day fast in the hospital as well, to see if my tumour was producing insulin.
2007 -“You have cancer”
I was in a heavy fog after the surgeons’ admin person told me over the phone: “Amber, don’t you know that you have cancer?” These words hit me like a freight train. I was only 28 years old. I had my whole life ahead of me. I’d just met the man of my dreams. I had the career I always wanted. This couldn’t be happening. I was depressed for about 2 weeks and then my boyfriend suggested that I go to church with him. I was always resistant to that before, but this was really scary and I thought: yeah sure, why not?
2007 - Coping with Feelings:
I remember trying to think positively about the whole thing and thought they would be able to just scoop out the tumour and I’d get on with my life, but I was quite surprised when I was told that they’d be removing most of my pancreas and my spleen, and possibly part of my liver. The surgeon showed me a coloured picture of some organs and started to cross things out and was explaining how he was going to connect it all back together with parts of me missing…It was so surreal.
I finally decided that feeling sorry for myself was no way to live out the rest of my days, so I shook off that feeling of hopelessness, and started to look for the good again, because I really didn’t know how long I had.
I was going to throw a going away party for my spleen! I invited all my favorite people and asked them each to make me a page for my scrapbook about how we met, or their favorite memory of our friendship. It was very soon after this that the most amazing thing happened: My boyfriend proposed to me and I also gave my life to Christ the same day!
2007 - Exciting News!
I was scheduled for a distal pancreatectomy and splenectomy for that June so we had no time to waste! We decided to have a small wedding, 13 days after his proposal, my husband to be quit his job and moved in with me the night before the wedding. Everything was happening so fast! I didn’t have time to buy a wedding dress or anything! We had a beautiful but very small wedding service and lunch afterwards.
2007 Distal Pancreatectomy and Splenectomy Surgery:
My surgery was 16 years ago now. I was extremely nervous beforehand and in so much pain afterwards. I guess they were having trouble managing my pain. I was on a morphine pump for several days as the epidural that they had planned didn’t work out for me. My surgeon did an excellent job. I was very fortunate to not have any leaks. I did end up with an infection that opened up my incision and they had to clean and pack my wound to heal from the inside out. My recovery took an extra month because of that, but I was able to still do a lot of short walks with my husband. And thankfully was given digestive enzymes to be able to eat without too much pain. We watched a lot of comedy shows together and played a lot of games to keep my mind occupied too.
2007 - Recovery:
I went back to work about 4 months after my surgery when my wound was almost healed. I struggled with digestion and fatigue quite a bit, but found immense joy in being given a second chance at living.. I didn’t realize that my diet wasn’t very clean and I wasn’t taking enough enzymes to digest my food. I learned pretty quickly that I could control my blood sugars by eating a lower carb diet. I also learned how to ride a motorcycle! I didn’t let anything stop me from living my life to it’s fullest!
2008 - More Exciting News!
The following May, 11 months after surgery, we bought a house and I found out that I was pregnant! I was extremely excited and a bit worried as my belly grew, I didn’t know what would happen to my scar, but it was fine and I had an amazing pregnancy and a beautiful son. My Mom was so excited to be a Nana!
2012 - Symptoms Returned:
One day, about 5 years after my surgery, we were snowshoeing, and all of a sudden I experienced that familiar thing that was happening before my surgery. It felt like my blood sugar dropped very low, very quickly, and I started to sweat and shake.
After that, I started to carry snacks with me. I went for more tests, and sure enough, they found more tumours in my pancreas. My endocrinologist has been trying to get me to have the remainder of my pancreas removed ever since then. I told him that we wanted to have another child so I put it off. And then my husband was diagnosed with testicular cancer and we didn’t end up having any more children after all. So It’s been hanging over my head that one day I would have to have the remaining part of my pancreas removed. I was having yearly testing done to monitor my PNETS and have been very fortunate that they have remained stable for quite a while.
My husband had surgery and radiation and has passed his 10 years of surveillance with an all clear. His diagnosis was harder on me than any of my own stuff. He's my rock and not the one that's supposed to be sick. I thank God every day for him.
2014 - My Mom Passed Away:
In 2014, I had to really fight for my mom to have an EUS done, after she had been quite sick and lost a lot of weight. She was scheduled for surgery, but when she woke up the surgeon said he was sorry, there was nothing they could do. She passed away from a pancreatic tumour that spread. I’m told her tumour was actually adenocarcinoma, and not PNET, which I guess means that it is possible to have both. She was 68.
2015 - AutoTransplant Removed:
In 2015, I had most of the parathyroid transplant in my arm removed, and experienced tetany again after that surgery, even though I spoke at length with the surgeon ahead of time about everything that went wrong the first time…
2016 to NIH:
In 2016, I contacted the National Institute of Health, as I found out that they had a clinical study for those who were genetically diagnosed with MEN and had active hyperparathyroidism. It took some time to get in there, but my brother and I travelled to Maryland in the fall and stayed for a few days and went through a battery of tests. We were each given a schedule with all the tests we were to have done. They were very thorough and I learned so much about what kind of condition my body was in. It was pretty overwhelming to be honest. I think there’s such a thing as knowing too much at once. There were little things going on all over the place in my body, and it kind of stressed me out at first, but I soon realized that there wasn’t much I could do about some of the stuff, and worrying was just going to make things worse. So I decided to concentrate on the bigger issues first, and what was actually in my control to change.
In 2017, I decided I needed to clean up my diet and lifestyle. I went to see a functional medicine doctor who specializes in individualized lifestyle changes and he helped me to identify foods that were causing my body to become inflamed. He measured the inflammatory markers in my body and then I worked on ways to reduce the inflammation by removing certain foods and chemicals in my home. Things drastically improved for me during this time. My daily headaches disappeared, the rash on my face and upper arms were gone, I had less pain overall and my digestion was way better! It was after about 18 months of this that I had another EUS and there were 4 tumours in my pancreas instead of the 6 that were there the previous time. I knew my hard work was paying off, and this is when I started to get really passionate about helping others live better with chronic conditions. I started a blog to keep track of all the things I was trying, and what was working for me. On a side note here, I’ve recently read that there is a drug on trial to help people with MEN, and looking at the drug, it is an anti-inflammatory type of drug. Looks like I was on to something here!
In 2018 I went back to NIH for the gallium 68 test and other various tests. Again overwhelmed by the amount of information, I was able to use it to make more tweaks. I increased my B12 and vitamin D supplements as they were drastically low.
The past 5 years have been more of the same. I have quite a bit of pain from my high PTH and calcium levels, so mobility is harder. I’m dealing with fatigue and really bad GERD lately but still trying to stay on top of my lifestyle changes that I’ve made, not because they will ever cure me, but because I just feel better when I do it. I’m being investigated for high cortisol and aldosterone levels as I have an adrenal gland tumour. Perhaps this will address my weight and blood pressure issues. I will keep researching different ways to support my body until I cannot put off surgery any longer. I still do not eat gluten or dairy and I’ve recently experimented with intermittent fasting, sauna, red light therapy, and castor oil packs, all of which I’m loving the benefits.
These Are My Top 7 Ways to Improve Quality of Life With Cancer:
7. Never stop asking questions and Seeking Answers:
If something isn’t working, I try to figure out why, or how I can make it better. I learned about my conditions so that I can make informed decisions and advocate for myself! There is no shortage of information out there. Learning about your own body and how it works is incredibly empowering! The knowledge that I’ve gained over the years has prolonged my life! Because I’m in the driver’s seat of my own health care, I’ve been able to actively seek out certain testing and treatments that I may otherwise not have known about.
6. Assemble your health care team:
I’m not afraid to ask questions about how to make things better for myself, or ask about who they can suggest I can recruit to be on my team. I’ve disagreed with some of the treatment options I’ve been presented with over the years. If someone does not honour my decision to deny a certain treatment, then they are not on my team. I will also seek out alternative medicine supports in addition to traditional treatment, and I have been quite successful with the results.
5. Find someone to talk to:
Cancer is hard and no one should face it alone. If you do not have a support system in place, you need to build one. There are support groups organized by our very own CNETS group, and others on social media that you can join, as well as counseling available at most local churches. I know that mental health supports can be expensive but there are resources out there if you know where to look.
4. Change your Diet and Lifestyle to lower inflammation levels in your body:
Change is hard, especially when you're extremely tired and sad and sick. But make small changes, baby steps. Each time you buy something, try to find a better version of the previous thing, and the changes will add up. I promise that it’s worth it to just feel a bit better and to have a bit more energy. This also helps you to feel like you have control over something.
3. Don’t feel sorry for yourself for too long and always try look for joy:
Regina Brett said: “If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.”
Preparing for this conference was the first time in a long while I’ve actually taken stock of all that I’ve been through. It’s tougher seeing it all like this, and aside from Dr appointments, I do not like to think about at all. Distraction really works well as a coping mechanism! You probably will be grieving your old self but if you can change your focus to something outside of you, maybe a project, hobby, or helping others, it will take the spotlight off of everything that’s wrong for a little while. This is also the perfect time to look for joy in any way possible.
2. Make self care a priority, and be gentle with yourself:
What this looks like is different for everyone. For me, it is connecting with people when I’m feeling well, or having a long bath and puppy cuddles when I’m not. I’ve learned to say no to things, to make sure that I’m not over-committing myself. I get fatigued easily, and know I need to put boundaries in place to save my energy for healing or recovering.
1. Don’t lose hope!
My faith has grown immensely since my diagnosis. I used to feel like a tiny ship trying to navigate a huge ocean by myself. When I learned about Christ’s love for me and the comfort that comes with it, it was a huge weight off my shoulders. I learned that there are some things that I can control, but most things I cannot, so I gave my problems to the One who can.
“If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.”
~Regina Brett
Thank you for listening and I hope my story will benefit you in some way!
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