This podcast is great, so many are too clinical. This has helped me so much as a survivor of breast cancer. It has valuable information that I can use. I have been on such a downward spiral. This gives me some tools I can use."
In this episode you'll hear my story of weight gain and the struggle to get back to a healthy weight after breast cancer treatment.
I'll share my trials, frustrations, and successes with trying different approaches to finding a nutrition plan that works. I'll also share how to keep a positive attitude and find the tenacity to keep pressing forward with weight management goals.
Finally, I'll introduce an approach that not only is effective but easy to follow and that science has shown is beneficial in supporting the body in resisting cancer.
If weight management has been a struggle for you since finishing chemotherapy, radiation or using tamoxifen or other hormonal therapies, don't give up.
You are not alone and there may be an approach that will help you without forcing you into a life of deprivation and calorie counting.
Read the Transcript:
If you follow my podcast, The Breast Cancer Recovery Coach, then you may have noticed that I did not post any new episodes in the month of May, and if you don't follow my Podcasts, it would be awesome if you could find a time to go to the iTunes Store or to my website and check it out and become a subscriber so that you never have to miss an episode. That being said let me get back to my absence in May.
When you make a decision to put yourself out as a public personality for any reason, mine obviously being recovering from breast cancer, most people don't realize how much work goes on behind the scenes (That included me!). After working on starting my own business for over a year, while working full time at a local nonprofit, everything came to a head in the month of May when I took on planning a big event at work, and two of my children became sick, one of them so ill she was hospitalized for a few days. No differently than everybody else, my life just sometimes gets in the way of what I really wanted to do.
Keeping it real
As much as I love podcasting and as much as I enjoy my work as a breast cancer recovery coach, I think it's really important to it acknowledge that the struggles we go through in life are real for everybody and I am no exception.
Another facet of putting yourself out there in the public, at least for me, is that I really want to focus on things that are positive and solution oriented. I want to motivate people, inspire people, and highlight people who are doing amazing things but, I believe that it's also important to be transparent. I want to reach out to everyone who listens to this podcast, read my blogs and follows me on different social media platforms and connect at that level where we are all really clear on the fact that life is not easy for anybody and some things are harder for some of us than others because we all have different challenges as well as different coping mechanisms. And although that’s a reality, it’s my passion to support others in finding happiness and health through those challenges.
Since the theme here is being transparent, I'm going to talk with you about something that I normally don't talk a lot about publicly. Again, because I feel like it's a little more about highlighting struggle then it is about focusing on moving forward and looking at things that are positive in our lives but I’ve learned that sharing my struggles helps me to connect with people who are dealing with similar situations and to support them in finding successful resolutions. Also, sometimes it just feels good to know you’re not alone. When you feel like the only person going through this then you think you’re doing something wrong or you’re just a hot mess. That’s exactly how I felt when it came to managing my weight during and after breast cancer treatment.
I'd like to share my story with you today, so that you understand that even as a health and fitness professional, with a degree and several certifications in exercise and nutrition, post treatment weight management has been a real struggle for me. Just because you understand the science behind diet and exercise doesn't mean that that science is always going to work for your body type.
If you downloaded my book “The Six Habits of Healthy Happy Breast Cancer Survivors”, you know that I addressed some of the issues of weight gain in the book. I talked about how I try to focus on being healthy more than on being thin, but let's face it ladies, when we gain weight or when we are outside of what we perceive as our ideal weight and we won’t even consider putting on pants that don’t have lycra in them or, our tummy gets in the way of certain poses in yoga class it can be frustrating. It’s uncomfortable and it can undermine our feeling of self confidence and self esteem.
Many of you have had surgeries on your breasts or have had your breasts removed and you’ve had to process how that affects your sense of femininity and confidence. Add to that the extra weight on the tummy and anywhere else that resulted from the treatment you went through, the chemically induced menopause, or maybe even the treatment that you're continuing to be on, like tamoxifen or other hormonal therapy to reduce your risk recurrence and you can find yourself dealing with some pretty profound mental, emotional and physical effects.
Worse yet, I know that many health professionals don’t empathize with your plight. They try to use the same old laws of thermodynamics and they think you're sneaking ding dongs in the middle of the night that you're not telling them about.
I know, from my own experience that there are other factors at play here and someday, when they get around to doing the studies on what all of that chemo really does to us long term, a lot of people will have an awakening, and maybe even owe some apologies.
After my first surgery and the discovery that cancer had spread to my lymph nodes, I was told that I needed to have chemotherapy. The nurse who was getting everything scheduled for me to meet with the oncologist said to me, “Laura, the good thing is that you can eat and drink whatever you want between now and the start of your chemo. Go ahead and plump yourself up because when you start treatment you're going to lose a lot of weight. So, take these next few weeks and enjoy everything you wouldn't normally eat.”
Well, you don't have to tell me that twice because I love me some good food. I thought that sounded like a great deal, and a well deserved treat considering what I was about to embark on. I had three weeks to just eat, and drink, and have fun and you better believe that I did that! I gained 10 pounds in the little over three weeks between that appointment and the beginning of my chemotherapy. I was not at all worried about it because I was certainly going to lose 30 pounds or more over the next four months of chemotherapy. In 1993 my brother went through Chemotherapy for testicular cancer and he lost well over 100 pounds, so I was sure that I would come out needing to put more weight on to get back to a healthy size.
Dropping the bomb
Finally, the dreaded day came. The chemotherapy orientation appointment and my first infusion. I remember my heart beating so hard it felt like it was in my throat and at the same time it was so heavy it felt like it was in my stomach. It took everything I had in me to not get up and run out of that chair because I have no idea what this is going to do to me and I did not want to be poisoned but, I also did not want to die. So as I was trying to listen to the doctor over the voice in my head that was screaming RUN!! Get out while you can! I heard something that didn’t make sense, and then wait, stop, rewind did I just hear my doctor say that I could expect to gain 25 pounds or more? Whatever voices were going through my head at the time, that statement certainly snapped me out of it. I remember stopping my doctor mid sentence and saying, “Hold on a second. What do you mean gain weight? Don't you mean that I'm going to lose weight? I'm supposed to walk out of here, bald, pale and skinny. I’m supposed to look like Gollum from The Lord of the Rings, not like some corn fed farm girl. What are you talking about?”
Apparently chemotherapy had changed a lot since I watched my brother go through it in 1993. Well, maybe the chemo hadn’t changed that much, but there was a pharmacopoeia of new drugs that had been developed to manage the side effects of chemo. So, now I could expect to continue working, I wouldn’t have to be hospitalized and I was to tell my doctor about any and every side effect that popped up because there was a pill for just about everything.
Those pills combined with the steroids I would be taking would would most likely cause me to gain weight. Especially because I was 48 years old which meant I would probably be put straight into menopause by the chemo and my hormones would begin to wreak havoc on me too.
Let me tell you I was not happy when I was told I needed to have chemotherapy, but I was really sick to my stomach when I heard that I was about to gain 25 pounds or more after I'd already gained 10 pounds getting ready to go on a chemical diet that I had no control over.
However, staying true to my optimistic nature, I told myself, “It’s going to be fine Laura. That's just the average. It's something they have to tell everybody. You have a clean diet you’re going to exercise throughout this whole treatment (or so I thought.), you're going to be fine.”
I remember going in stepping on that damn scale every time I came in for an infusion and thinking, “My God I didn't even gain weight this fast when I was at the end of my pregnancies is what is happening? My mouth is filled with sores and blisters. I'm sick to my stomach all the time, in the bathroom battling unmentionables for hours every day, barely eating because it’s so uncomfortable and then I just get sick anyway and I'm gaining weight like crazy!”
If the laws of thermodynamics say that calories in versus calories out is the way to lose or gain weight, then somebody needs to go back to the drawing board because the calories in were not exceeding the calories out and I was packing on the pounds. By the time I completed treatment I had gained a whopping 40 pounds!!!
Still trying hard to stay positive and look for the silver lining, I would tell myself, “Laura it's OK. It's only temporary. It's a result of all the steroids, but the steroids are helping to manage the symptoms and allowing you to continue to work and to continue to participate in your life.” I would give myself permission to let myself off the hook. To not stress about weight, and to know that as soon as this chemotherapy was over on December 30th, 2012, I had only three weeks left before the cycle of cell death and regeneration was complete and then BOOM! I would be right back to normal.
I had a juice cleanse planned.(I live in Southern California, so it’s a thing) I had a workout schedule planned to ease myself back into some high-intensity training. I even convinced myself this was going to be a fun challenge. You know like that book, “From Fit to Fat to Fit”? This was what I was going to do. I could be that example of from fit to chemo and cancer back to fit. This was a story I could live with. Thinking that way helped me to get through it and then the magical time came when chemotherapy was over!
Getting back to getting healthy...maybe
I was so excited because in my head I had actually convinced myself that I was going to be normal after the three week cycle of chemo had left my body. I mean, my doctor told me I was going to be normal, right? I was looking so forward to throwing out that bag of pills. I was going to be done with the heartburn medication, done with the Effexor I was taking for all the nerve damage in my hands my feet, done with the steroids, done with the chemo, and even though I had to go on tamoxifen, my doctor told me that it was well tolerated and I probably would not have any side effects. YES! Free at last!
I had a bilateral mastectomy scheduled for March and in my head was this plan of how much stronger I was going to be before that surgery happened, how much weight I was going to lose how much more fit I was going to be. I was going to do nothing but focus on regaining my health for three months and BAM! I would bounce right back from that Mastectomy in no time!
I tossed out my bag of meds, and I picked up the first part of my two-week juice cleanse.
I want to stop at this point and reflect on how interesting this is to me. I'm not a fan of cleanses per se, I believe that a healthy body functions well and cleanses itself just as it was meant to do. However, I felt so bad after chemo that I went against my own knowledge, my own understanding, and I drank the Kool-Aid, or...I drink the juice.
For two weeks I was freaking starving, I had terrible headaches, I was weak, but I was determined. I was going to wash all these chemicals out of the tissues in my body with these green, gingery, peppery, crazy juice mixes (Which gave me indigestion so badly that I couldn’t lay down flat to sleep.) I woke up one morning to a blood vessel that had popped in one of my eyes, so I look like Rocky Balboa. I imagined it was from the intense pressure in my head that felt like it would explode at any moment from being so hungry. I hung in there though. I completed the two weeks and I did not lose a single ounce. Talk about deflated. I drank things that tasted like soap and nothing changed?!
Now, I'm well aware that two weeks is not a very long time. Still, I thought I would lose a pound, or gain some energy, see some kind of a difference...nothing. Add to that that in my infinite wisdom I threw out all of my prescriptions that were masking the damage that chemo had actually done to my body. I was now in so much discomfort, I walked like a 105-year-old lady, every bone in my body hurt, my joints were painful, the neuropathy in my hands and feet was intense, and I was still 40 pounds overweight! Not to worry I would find another path.
A friend of mine, had discovered a liver cleanse and she lost 25 pounds in a month after following this plan. Her husband lost 20 pounds, her sister lost 20 pounds and I thought, “This makes perfect sense. My liver has been under a lot of stress because it had to work through the detoxifying of all those poisons that were pumped into me during chemo, so I should focus on supporting my liver.” (Can you tell at this point that i had never struggled with managing weight prior this experience?) I mean I was just throwing anything against the wall to see if it would stick! Good science be damned, I’m desperate!
I called the physician who created the liver cleanse and I filled him in on my history, my current struggles, and I asked his thoughts. Of course, he told me that this cleanse was exactly what I needed and that I could expect to lose at least 20 pounds. Once again, I drank the Kool-Aid.
I spent a few hundred dollars on the cleanse, I took shots of fresh squeezed lemon juice, and olive oil, I ate the digestive enzymes, I took the probiotics, I followed the very low-calorie food plan, and a month later I was hungry, fatigued, in pain, and I was still 40 pounds overweight.
At this point it was time for my mastectomy followed by a few months of recovery and other reconstructive surgeries. However, I've always been a believer, and still I am, that weight-loss happens in the kitchen and fitness happens in the gym. Even though exercise of course contributes to burning more calories and supporting weight loss, a lot of body fat can be lost by just changing your diet.
I became laser focused on my food. I found a local company that would prepare my food for me because there had been so many months of frustration and failure to budge my body’s composition that I started doubting myself. I thought maybe I was doing something wrong. So, I handed my nutrition over to them and I ate what they made for me for about six months. I had my food prepared, pre-measured, pre-cooked, pre-packaged and nothing. I lost no weight at all. NONE.
Lucky for me, I am a very stubborn person. When I set my sights on achieving something it's pretty rare that I give up.
I went back to my GP, had my thyroid tested everything was fine. I went to an endocrinologist to see if she could discover something that perhaps only a specialist could identify. I learned that just about every hormone in my body was out of whack and I walked away with a vitamin program that she told me, would support my body in overcoming the stress that I had been through with chemo and all the surgeries. She explained to me that sometimes the body reacts to such an extremely stressful situation by holding onto fat. That made sense to me from an Ayurvedic perspective. In that philosophy a situation of anxiety, stress and wasting is brought into balance by holding onto to heaviness, something that the body finds grounding and safe. This Doctor explained that I needed to make my body feel supported on a cellular level in order to let it know it could let go of fat. I proceeded to drop a couple hundred dollars more on vitamins with renewed hope. Sadly, the results were dismal. There was a small shift in my hormone levels and no weight loss after 90 days.
My GP suggested I try the Mediterranean diet. My oncologist just shook his head and said, “I don't know.” A trainer that I considered hiring told me it had to be something I was stuffing into my pie hole. That made me want to stuff my fist into his pie hole. But I didn't…I just kept searching. I was determined to find someone who would understand that I was doing everything I could possibly do, following every single rule of fitness, health, and nutrition without success and that they would say to me, “I know exactly what you're going through. I see this all the time here's what you need to do.” The closest I came to that was my plastic surgeon telling me that she has women in her office crying every day with the same frustrations that I had. She said, we spent several months trying to kill you and then bringing you back. Your body has a lot of stress to work through. At least she made me feel like I wasn’t crazy.
As I write this I am reminded of one of the most ridiculous comments people make to cancer survivor's. I’m sure it’s said with only good intentions, but if you are not a cancer survivor and you're reading this, please don't ever say it to another survivor again.
You say you're frustrated with losing weight and someone says to you, “Well, you should just be glad you're alive!” How does that make sense? Why is it OK that if you haven't had cancer you can be frustrated with your weight and try to lose some extra body fat, but if you have had cancer you don't get to be frustrated and you should just be glad you're alive?
These two things are completely unrelated. It's like love and sex people, it's mutually exclusive. I'm very happy to be alive every, single day, and every, single moment of every day, but I would still like to lose the extra body weight that I'm caring around. See nothing to do with each other...anyway let's move on.
Stumbling onto something
I began doing more research into menopause and its effects. (My first chemo treatment hurled me into menopause with a fury.) The overall recommendation for losing menopausal belly fat was high protien. So, I tried high-protein, Paleo block diets, and I hired a trainer/nutritionist who specializes in working with breast cancer patients. He was awesome and helped me realize that I had worked my way down to eating almost nothing out of the fear of gaining weight. He changed how many calories I ate, switched around the macronutrients to higher protein, lower carbs, higher carbs, higher fat, lower fat and I did start to see a little fluctuation. I would lose 2 pounds I gained a pound I lose a pound I gained 3 pounds but at least something was starting to shift.
Meanwhile, I had seen some people around me have considerable success following a ketogenic diet. But, I had understood from all of my reading and research that having a high fat diet as a cancer survivor was something you wanted to gravitate away from because it could change the intestinal flora and perhaps increase absorption of estrogen which is something that an estrogen, progesterone positive survivor wouldn’t want to do. Still, the successes that I was seeing were remarkable, so I started doing some research into this ketogenic diet to get a better understanding of how it actually worked.
What I found shocked me, in a very wonderful way. I came across some interviews with Dr. Dominic D'Agostino, an Assistant Professor at the University of South Florida College Of Medicine, Molecular Pharmacology & Physiology. This guy is smart, he follows a ketogenic diet, and he is in amazing physical condition. His lab studies the effects of metabolic therapies on brain cancer and metastatic cancer among other things. The information that this man had to share was so compelling that I started listening to every interview ever done with him. I read the books that he recommended, listened to podcasts about the ketogenic diet, read cookbooks about the ketogenic diet and I got excited to give it a shot.
What I discovered was that the ketogenic diet is not seen as a risk for cancer survivors. It’s actually beneficial to cancer survivors because it transitions the body from using glucose, or blood sugar, as the primary source of energy to using ketones as the primary source of energy. Now I don't want to get to scientific here when it comes to the differences between these energy sources, but let's just say that ketones are something your liver makes when there's not enough blood sugar to give you the energy that you need.
That's a dramatic oversimplification, but I will be going into a lot more detail about the ketogenic diet on my next blog post. There is actually a lot of great science out there regarding the ketogenic diet and a couple of the books I read sold on its validity. If you want to check those out before my next post, you can find them here on my website under resources for Episode 7.
The primary benefit for cancer survivors is to understand that cancer cells grow in the presence of sugar. They must have glucose in order to survive, and in fact they absorb sugar at a rate of up to 200 times more than a normal healthy cell. So when you are consuming a diet high in fat, such as the ketogenic diet, and very low in carbohydrates, such as the ketogenic diet, the glucose that is in your blood is mostly used by your brain and your red blood cells with any gap in energy being supplied by the ketones that your body is now producing.
I started the ketogenic diet the last week of April 2017. This is now mid-June and I have lost 8 pounds! I have also lost inches in my hips, waist, and stomach. I have read many case studies where people experience much more dramatic weight loss than this right off the bat, but I’m not complaining. For the first time that in nearly 5 years of consistent trying, I'm seeing a decline on that scale. I’ve lost an inch and a half in my waist, I'm not having any bloating, I have not taken a TUMS or a Prilosec since the beginning of May and that is remarkable! My hot flashes have dramatically decreased and I don't experience energy lows in the middle of the afternoon.
I'm so excited about eating this way that I've turned my sisters and my husband onto it and my next blog will go into a lot more detail on the structure of the ketogenic diet. Here's what I've seen so far. My husband has lost 25 pounds in 8 weeks. Of my sisters, one lost 9 pounds the first week, the other 10 pounds the first week, and the third lost 4 pounds. We now share a text thread with each other where we send pictures of the delicious, cheesy, creamy, foods we’re making and we share the recipes along with the continued success in losing weight.
Now, I realize that a ketogenic diet isn't for everybody. Some people are not going to be comfortable eating high amounts of fat or they don't find that to be appealing and some my not have the degree of carbohydrate intolerance that others of us struggle with.
My family history points to me having a predisposition to carbohydrate intolerance as my father was a type 2 diabetic, morbidly obese, and lost his life to comorbidities caused by his diabetes. I also have overweight siblings and a family tree full of heart disease. This is a big part of why I have been so focused on nutrition and exercise throughout my life. I did not want to end up living a life of diabetes and heart disease.
However, thanks to the science of epigenetics, we know now that if you have a genetic predisposition to something, even though you make as many of the healthy lifestyle choices that you can to prevent those genetics from kicking in and creating diseases, if you are exposed to extreme emotional, physical or chemical stressors, such as chemotherapy, those stressors can trigger genes to turn on and begin expressing themselves in ways that can lead to the full blown disease. I am certainly no doctor, but I believe that that is exactly what happened with my body.
I want to make sure and point out that I am not a doctor, or a registered dietitian. The information that I'm giving you is from my own personal experience and although I do have a health science background I'm not qualified to give you medical nutrition information.
Be sure to check with your doctor before you make any dramatic changes in your diet or lifestyle. Your health, your safety, your happiness, and your well-being are of primary concern
I hope that sharing my story helped you to see that if you are struggling with weight gain after breast cancer treatment you are not alone. I also want you to know that if extra body fat is a concern because of your own sense of confidence and self-esteem or if it's a concern because of excess body fat being related to cancer recurrence don't give up. Keep asking questions, keep trying, keep tweaking your diet and stay consistent.
Make sure you’re staying away from processed foods. That white sugar, White flour, white bread, cookies, soda and food that comes in boxes and bags when it shouldn’t. That stuff has got to go. If you don't make any other changes, start with that change get rid of the processed carbohydrates in your diet, then pay attention to your body by practicing mindful eating. Check in with yourself to see how different foods are affecting you, and how different foods affect energy level. Notice if you walk around with brain fog most of the time, or if you get it in the afternoon and and how different foods affect that feeling.
I believe that your body gives you many signals on what is good for it and what is not and you just have to pay attention. You will know when something's working and when it isn't if you’re paying attention. Don't feel like you have to stick with one thing if it isn't giving you the results that you want, or if it isn’t making you feel like you have enough energy to actively and happily participate in your life at whatever level you choose. Don’t settle for feeling bad. Keep pressing forward, and be sure to listen to episode 8 where I’ll talk in detail about the ketogenic diet and it’s benefits.
I know the struggle is real ladies. life is difficult sometimes, weight management is difficult often times, menopause, aging, dealing with hot flashes, family, work, it's all out there and it's a lot to balance but it's easier to balance if you understand that others are looking for ways to balance it too. I know there are a lot of brilliant women out there listening now who have found ways to achieve success and balance and to find happiness on a daily basis. So look for me on facebook Laura Lummer, on instagram @TheBreastCancerRecoveryCoach and become part of our community of survivors who share wisdom and support with each other.