It was far from easy, but Francie Nordin survived acute myeloid leukemia, a diagnosis preceded by epileptic episodes and pancytopenia, the latter tied to low red cell counts, low white cell counts and low platelets.
Her journey began in 2020 when her left foot started swelling. Then she had a scary episode while driving in which her left eye started uncontrollably moving left and right.
Francie went to an ER, where initially they thought she had a stroke, but tests came back negative, so they referred back to her primary care physician. In September of that year, she more epileptic episodes, and in December she was diagnosed with epilepsy.
Francie tried to find an epilepsy drug that would work for her, without success. She had several reactions and was constantly changing medications. Then one day she was found on the floor of her living room. She was taken to ER and then because of very low potassium, she was admitted to a hospital. Throughout her 12-day stay, she was found to have pancytopenia. Francie strongly advocated for a hemotology doctor instead of an outside referral. At first the doctor thought Francie might be suffering from myelodysplastic syndrome, in which immature blood cells in the bone marrow do not mature. The oncologist said he and his staff couldn’t figure out what was going on, so he referred me to the Mayo Clinic in Scottsdale, Arizona. There she saw a whole bunch of specialists who did a whole bunch of workups and said Francie could be suffering from a virus she had had since childhood.
Still baffled, they called for a bone marrow biopsy. Francie Nordin went back home to Spokane, Washington and waited for the results, as doctors thought she might have a rare form of acute myeloid leukemia. They weren’t sure if epilepsy was the cause, but did say it is not uncommon for an epilepsy diagnosis to lead, the chances of blood cancer are very high.
Francie decided she wasn’t going to do a bone marrow transplant because she knew what people went through when opting for such a procedure. She instead chose natural remedies and to rely on prayer. In the meantime, she developed an infection called parvo, one rarely seen in adults. Francie said she made huge changes in her diet, got lots of rest and was soon off her epilepsy medication.
Mentally she felt sharp, but physically she was miserable. Her iron was low and so were her blood counts.
However, Francie says through her diet and through prayers, from her and her friends, her test results improved and so did her health. It is a process, she says, and she continues to believe she will once again be made whole as if cancer never had happened to her. Francie Nordin also says she will be better for this journey, as difficult as it had been. She advocates for oncology patients and she does so with a passion she would not have had were it not her cancer journey.
TRANSCRIPTION
Bruce Morton: Greetings and welcome. This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. On this episode, we are going to hear the inspiring story of a woman who was diagnosed with blood cancer, but found her way to survivorship, thanks to her faith and her realization that knowledge is power. She is Francie Nordin of Spokane, Washington, and hers is a story that should resonate with anyone on a cancer journey. So, here she is, and Francie, welcome to Cancer Interviews.
Francie Nordin: Thank you for inviting me. I am excited to be here and share my story.
BM: It is our custom to begin our interviews the same way each time and that is to learn a bit more about you exclusive of your cancer journey. So, if you would, tell us about where you are from, what you do for work and what you do for fun.
FN: Well, I am from Spokane, Washington, which is in the Pacific Northwest. I love dancing, I love hiking, trail running, I love boxing, I love spending time with my family, I love spending time with my grand baby. I am a motivational speaker, I do consulting for hematology oncology clinics, providers and drug pharmacy companies.
BM: That sounds like an active lifestyle, a healthy lifestyle. You must have noticed when something wasn’t quite right. Just what did you notice and how did it manifest itself?
FN: Actually, I noticed my left foot started swelling. No matter how much lasix my doctor gave me, it wouldn’t go away. Later on, I was driving, and I had an episode where left eye started looking left and my left eye started looking right and I went completely blind. They thought I had a stroke in the ER, but tests came back negative, so they referred me back to my primary care doctor. I didn’t do much about it, I just kept on my way, I was very busy. Between everything I was doing, I was spending much time looking at the little signs on the way. I ended up in September 2020 having epileptic episodes, I didn’t know what it was. By December 9, 2020, I was diagnosed with epilepsy. In my heart I felt I should go the natural way with natural medicines; but the conversation with the provider was that it was very important that I start with medication because it was explosive epilepsy. It is important that you know this because you will understand my decisions for treatment later on. So, through my process of trying to find an epilepsy drug that would work for me, I had several reactions and kept having to change medications and finally came to this one medication. I was on that for six months and then one day I was found on the floor of my living room. My face was bashed in, I was seizing, and they took me into the ER, admitted me to the hospital because I had very low potassium. They actually said if I wasn’t found when I was, I would have been dead by the following morning. Then throughout that 12-day hospital stay, I found to have pancytopenia, which is low red cell counts, low white cell counts and low platelets. I advocated for an inpatient hematology doctor to see me instead of me instead of an outside referral just due to the timing and was very thankful I did, and he started a major workup. One of the things they were considering was my myelodysplastic syndrome, but my doctor said epilepsy medications are natural immunosuppressant drugs, all of them are. And they all dealt differently in that category, but it looks like yours is going a very rough route. That’s when he said he would take me off this medication and put me on another one that had less immunosuppressant side effects. As I started tapering off, my counts started going up, but by July of 2021, my epilepsy was out of control, as I went on the new drug, my counts started going down. This was six months of counts going up and down. The oncologist said I needed an academic center because his staff couldn’t figure out what was going on. I ended up with a heart murmur by this time. My legs, my abdomen, my chest had bruises all over them and my counts were nothing stable. I went to an academic center. They did some more tests and said they would have to weigh the risks of the epilepsy medications and your counts. They are not drastic, so let’s wait and see. That was in October. By December, he was calling me telling me I needed to get off this epilepsy medication right now because my counts had dropped. That’s when he referred me to the Mayo Clinic in Scottsdale, Arizona. At one point, in early 2021, I had an EMU stay, which was in an epileptic monitoring unit, which had an epileptic disease specialist, and I saw a whole bunch of specialists there. They did a whole bunch of workups and said it could be a virus I have had since I was a kid. I returned to the Mayo Clinic in January 2022, saw the specialist. I kept a journal, I kept pictures, and I kept videos, and I always tell people who in the diagnostic phase is journals, pictures and video because they speak volumes to your doctors. She saw all my photos, videos and journal, and sent me to multiple specialists. She didn’t know exactly what was going on, but through all those specialty referrals, there were other things that popped up, by I saw the hematology oncologist. That’s when they decided they needed to do a bone marrow biopsy. The concern was for a rare form of AML. We then waited for the bone marrow biopsy results. I went home, and sure enough, it came back with a blood cancer diagnosis. So, was epilepsy the cause? No, but the medication is what they were all considering, and I suffered this very rare side effect. There are studies that show with an epilepsy diagnosis, the chances of blood cancers are very high with an initial diagnosis. AML has the highest in that category and it is 3.8 percent. Now options are on the table, but because of options that were on the table for me in the past, options I should not have done, but I did anyway, my body is struggling and not doing well, I really hesitated on a lot of medications. I was not going to do a bone marrow transplant because I had seen what people had gone through. The other option was because my counts were so low that they couldn’t get me well enough to take the treatment. I ended up getting an infection in adults, very rare, called parvo, so we had to treat that before we could even deal with other things; but I believed in natural medicine, I believed in the power of prayer. I had tons and tons of people praying for me. I spoke to my body every day that my bone marrow is going to produce 100 percent perfect cells every single day. I had a huge diet change, rest, and got off the epilepsy medication. So, things started to change.
BM: It sounds like mentally you were sharp in your approach to all this, but physically, how did you feel?
FN: I was terrible. Again, low blood counts. My iron was low, my count was 0.47. My hemoglobin was low. Physically, there were days in which I don’t know how I got out of bed, and some days I didn’t get out of bed, but I have a real strong faith. I believe if you continuously think negative, you are going to produce negative, and I would rather take the chance of thinking positive. Every single morning, I listen to a hope message of some sort. Maybe ten or fifteen minutes, maybe two hours. I don’t let my body, my mind and my spirit go without feeling my heart and my spirit.
BM: You had mentioned a change in diet, and I want to get to that in a second. I should mention that on Cancer Interviews, we do not give medical advice, but I would like to hear in terms of your natural ways of addressing your blood cancer, in which direction did you lean?
FN: I have had a registered dietician since 2015, so I have been mainly on a paleo diet, and it helped me lose 150 pounds. Diet, exercise, nutrition and counseling. Everything was all natural. No surgeries, no diet pills, no nothing. I reached out to her and asked what we needed to do, and she said I needed to get on an anti-inflammatory diet. So, there are days when I mess up or you know, struggle, but she has been patient with me and has really helped me. I also saw a naturopath down in Arizona and she started me on certain products. Again, stopping the epilepsy medication was a key factor.
BM: You’d mentioned diet. Do you stick with that diet now?
FN: I am still adjusting, but paleo is mainly a meat-driven diet, a lot of protein. I have O-negative blood, and I had a lot of red meat. Every morning, I have sliced mushrooms, sliced onions, pate, I am doing all organic, nothing with antibiotics in it, I mean I am working on my water, the type of water. Everything that you can imagine, taking toxins out. A doctor is doing a toxin review on me. The biggest thing is, I am staying with it, and I am still recovering. Just because the bone marrow test looks great doesn’t mean everything is perfect. I am off the epilepsy medications, but I have had four seizures. They are studying my brain and my bone marrow because they have never seen anything like this before and my counts have dropped the last two weeks. I want people to know, it is going to take time to recover. A friend who is a cancer survivor texted me and said she wished her friends would realize that she is never going to be the same. I told her you have to be careful who you talk to and when you circle down your circle of influences to know who you can trust, just remember, they want to find the miracle cure for you, but we to let them know that even in recovery, it is going to take time.
BM: Let’s talk about your sources of support. You had mentioned your faith and if you would, elaborate a bit on how that has played a role.
FN: When I was first diagnosed with epilepsy I met with several spiritual leaders and counselors because my health and fitness is a Christian-based program, so I know a lot of spiritual leaders. This pastor, Teresa, has been with me through my whole journey, epilepsy, cancer, weight loss and she reminded of the story about ten lepers. The lepers came up to Jesus and wanted to be healed and she said they were healed. They all turned and went away, and they were healed. Then one turned around and came back and said he wanted to thank Jesus, who said because this person recognized me, because he said thanks, he will be made whole. I knew I needed to continue my work. I knew I needed to continue to be a patient advocate, I knew I needed to continue to advocate for health and fitness, but my faith also helped me to go to sleep at night and helped me wake up in the morning. My resources were advisors and counselors, and I knew I could reach out and say I need prayer because today is a rough day. They instantly prayed, no questions asked. Then there was my family. My two boys, when epilepsy started, they were the ones that picked me up off the floor after I had my first seizure, I lost control of my bowel movements, they picked me up, carried me to my bathroom and they took care of me. They are young boys, at the time they were 26 and 20, and they are having to pick their mama up off the floor when she was dirty. They would always keep saying, “Mama, you are the strong one, don’t give up.” I have a significant other who every day, he’s saying, “Good morning, gorgeous,” and it reminds me even though my body has got bruises every where, you know, he finds me gorgeous from the inside out. And then there are my friends. I had to trim down into my inner circle. They don’t hesitate to get in with their hands dirty and get things done for me. They don’t hesitate to pray, they don’t hesitate to let me vent, and they don’t hesitate to tell me when I am wrong and that they still love me. Once you know who you can trust, and who is safe to talk to, you have got to remember the intent of the heart. Meanwhile, I knew God was with me and he heard my prayers. Now we have great test results, and we still have a road to go, but I am not afraid. That’s the other thing I had to do. I had to face my fear and ask what is the worst thing that could happen? I could pass away, but you know what? My kids are great, I have made an imprint in this world, done lots of good things in this world, raised my amazing family and then my heart’s right, so it is a win-win either way. Heaven’s a good place and I know my family will meet me there, so I had to just let go of the fear of the worst-case scenario.
BM: When did you start thinking that survivorship was possible?
FN: Literally, it wasn’t until I got the results. I always believed. By always believing and always hoping because faith is evidence of things not seen. I hadn’t seen the results yet, but now I believe for a total recovery and that to be made whole as if cancer had never had happened to my body. That said, I know I will never be the same. I will only be better. I will have compassion. When I advocate for my oncology patients, I have been on the other side now. I can advocate even more. Beyond survivorship, I want to call it ‘overcomer-ship.” I have overcome a big mountain with a lot of little mountains along the way.
BM: Francie, we are going to wrap things up now, and we like to conclude in the same way with each guest. I know the answer to this question is going to be in your wheelhouse, but if you encountered someone who has just diagnosed with blood cancer, I am sure you would have plenty to say to them; but if there one thing you would tell them that really stands out, what would it be?
FN: There is Psalms 27:13. “I would have lost heart unless I believed I was seeing the goodness of the Lord in the land of the living,” and I would tell them don’t give up. Professionally, I would tell them to get a second and third opinion.
BM: That’s tremendous advice that packs a great wallop. Francie, thanks so much for sharing your story with us, really appreciate hearing it, and of greater importance, our listeners and viewers are going to appreciate it, because that is great advice, real time advice that they can apply. So, Francie, thanks again for taking the time to be with us.
FN: You’re welcome, thank you so much.
BM: And that’s going to conclude this episode of Cancer Interviews. We want to remind you as you or a loved one go on a cancer journey that you are not alone. There are plenty of people like Francie who are there to help you with cogent advice. All you have to do is listen. So, until next time, we’ll see you on down the road.
SHOW NOTES
TITLE: Francie Nordin, Blood Cancer Survivor – Spokane, Washington, USA
Francie Nordin was diagnosed with epilepsy and while she sought to address the diagnosis with natural remedies, her doctor insisted on medication. Francie believes that medication led to a subsequent diagnosis of blood cancer. That’s when she put her assertive qualities to work and assumed the role as her own advocate. She credits her self-advocacy and her faith as the key ingredients in her survivorship. This is her story.
Additional Resources:
Cancer Interviews: https://www.cancerinterviews.com
Support Group: www.kicking-cancer.org
Time Stamps:
01:45 Francie noticed swelling in her left foot.
02:45 When she suffered epileptic seizures, her doctor insisted on medication.
03:30 She had a bad reaction to the medication.
07:07 Learned she had to undergo a bone marrow biopsy and was diagnosed with bone cancer.
08:40 Why Francie declined a bone marrow transplant.
10:30 During treatment, she felt terrible.
21:13 When Francie determined survivorship was possible.
KEYWORDS (tags):
bone cancer
lasix
cancer
acute myeloid leukemia
cancer interviews
myelodysplastic syndrome
bruce morton
pancytopenia
francie nordin
grand mal seizure
epilepsy
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