One Month, two scans...

I haven't posted in a month. I haven't been handling this "stage 3d" stuff well. I am always hard on myself and I have spent the last 4 weeks progressively being more hard on myself. Most people who read what I just typed are probably thinking - "this girl is crazy, her last post was all about beating the odds." The problem with MY thinking is that I expected that this cancer would be gone by Christmas. Its an unrealistic expectation, like many others I have put on myself time and time again. Since it is not gone and since I have yet to get a clean bill of health, I have been ruminating about all the things that I DID WRONG to cause this. So here comes the self-blame followed by the guilt, shame and anxiety. Lately each day I walk out the door with this sense of  impending doom thinking "when will I have to not worry about this again," or "when will this all be normal again and I can actually PLAN ahead."

Needless to say, I have been spending too much time in my head and that is a pretty dangerous place to be. I have forgotten to take one day at a time and it has led me to become a depressed Grinch who has started to give up on the things she enjoys. I have slowly been avoiding the gym living in fear of what I could lose due to cancer - my physical strength. I have been sitting home worrying that a knot in my muscle is a tumor (yes, this is the truth) and that a stuffy nose is the fluid filling up my lungs and worsening. These thoughts are what happens to a person with anxiety that lives with cancer. Its starting to consume me and its pushing me to the brink of being able to diagnose myself with the DSM.

I was letting my emotions control me this past month. Even given the evidence I received from having stable scans last week, I was an emotional mess. My doctor reported that we can't say that there is still not cancer, but its not worse & the organs look healthy minus the fluid. This means that the pesky lymph nodes in my chest wall are gone and the fluid is finally less than 2cm in my lung. I am posting this as a reminder to myself that things are not that bad. It is not perfect, but it sure could be worse.

Yesterday, I talked to my boyfriend about this and he gave me the same advice I give everyone - "get out of your head its a dangerous place, take one day at a time and breathe."

Today, I forced myself to move today and get to the gym for some solace. Lately I have been ruminating about how I have not ran more than 5min since July. In August, my lungs became to heavy from the fluid I could barely walk or run. The fluid remained until October and I avoided the treadmill out of fear. I was letting fear guide my life. I reminded myself of what I was doing and told myself - "The only way out of fear is to face it. "

...I got to the gym and walked to the treadmill. I started by walking for 3min and then I found myself running. Yes, I was running and I ran 1mile and change. I was slow, but I ran. I could breathe and not hear an ocean on my left side. It was in that moment that I realized that I have yet to lose my strength and I am actually doing better.

Proving Stats Wrong

When I was first told I was going to lose my left lymph nodes & the complete function of my chest muscle, doctors told me I would never be able to lift upper body weights again. I had one doctor tell me I can lift light weights, when I asked what they meant by light, the doctor replied "2-5lbs." My head spinned and I laughed to myself- light was the 15lb dumbbell. The problem with me is if I am told I cannot do something, I want to prove people wrong.

In 2010 pre-cancer, I was at my peak athletic form. I was taking spin classes, running 6mi at 9min mile pace, and lifting heavy weights. It took me 2yrs to get to that point and I was dead set on getting back there. Six days after my mastectomy, I resumed exercise. I was walking 4mi daily at 2mph and using the recumbent bike for 60min. I worked my way up to running 8 weeks post mastectomy & by the time I was 2mo into chemo I was run/walking 5-6mis 3-4x/week. I was slow, but I was doing it. I also started lifting (not light), I was unable to pick up at the same weights and reps I started at so I started low and slow. This was January 2011. Needless to say, I kept lifting, I kept running and I kept proving the stats wrong.

In September 2011, I developed lymphedema and blamed it on the weight lifting and starting p90x. I met with an OT who told me I could not lift, so I stopped and I ran a lot. I was unsatisfied, I get a sick confidence boost from lifting. Naturally I ignored her advise, used my sleeve & glove and was able to combat the lymphedema with weight lifting. I was struggling with regaining strength due to a poorly fitted glove & sleeve and damages endured from 2 surgeries and radiation. I kept pushing though. I did not give up.

I kept working out and made another step towards running long distances again in October 2012, I was lifting, but I plateaued and was afraid to push myself to get back to 2010. I ran, I ran and I ran. I was able to run 8mi. It is something I am proud of. I was supposed to do a Half Marathon, but never made it due to lack of time to train and something "funky" going on with my oxygen intake or asthma. Around the time of being unable to finish my training for the Marathon & devastated that my running career might be over, I went to a new OT. This OT who told me to get a better sleeve & go back to what I was doing in 2010.

I listened to her. In April 2013, I got that sleeve and I want to show you an idea of the gains I have made:
     Shoulder Raises have gone from 5lbs to 20lbs within 6mo
     Barbell Squats have gone from 45lb to 150lbs within 6mo
     Lat Pull downs have gone from 45lb to 95lbs within 6mo
     Shoulder Press has gone from 5lb Dumbbell to 45lb barbell within 6mo.
     Deadlifts have gone from 40lbs to 115lbs within 6mo
     Lunges have gone from body weight to 95lbs on each leg in 6mo
     Barbell rows have gone from 20lbs to 75lbs in 6mo
At this time, I stopped doing all AB work, lifted heavy weights, and have only done interval/sprint cardio. Compared to pre-cancer, I have gone from a size 6 to a size 2 and I weigh within the same range of 135-140lbs that I did in 2010. 

I was re-diagnosed in July. The cancer is in my pleural lining on my lung. I thought that this would end my goal to become as fit as I was in 2010. Granted, I had a good 3 weeks in August, where climbing stairs was a chore. I could barely walk to the gym or up stairs at work without getting winded. I bounced back. I kept moving. I kept lifting. I was feeling defeated, I am not going to deny that. I look back on that month and I think - "that sucked," but I am getting back to normal.

In July, I told my doctor in NJ what I was doing & he is actually measuring my progress or potential decline in progress on my exercise. He encouraged me to run through chemo and now he told me to listen to my body, keep exercising, and see if the breathing is impaired when I work out. If that is not enough motivation, I dunno what else is. Heck, I need something to ease my mind that I know when I am going to feel better.

It is November. For two months, I have had no estrogen in my body, which has resulted in achy joints in my hands, knees, and shoulders. Most days its hard to get moving, because this is painful. Nothing but Aleve helps with the pain and that is dangerous to pop everyday. This pain has turned my AM work outs into sleep-ins, because I cannot push myself or move my body. I am very hard on myself about this. I like getting the gym out of the way, but the joint pain is not bearable most days. Despite the pain, I told myself I had to continue to work out 3-4x/week and two of those days include sprints on the step mill. I might not be running 8mi, I might not have the gusto to do spin, I might have to save working out for days off and in the PM, and I might not be able to workout 6x week due to joint pain; but I sure can push out 3-4 amazing weight workouts each week. I am happy with that. If I can do this, I contemplated competing, which is on my bucket list, I just do not know how. I wish I did.

The coolest thing about this is:
1. I was told I would lose muscular function in my left arm and chest. - Proved them wrong
2. I have cancer in my lung & I keep doing cardio and fighting through it. - Proved them wrong.
3. I was forced into chemical menopause and was told I would lose muscle tone. - Proved them wrong.
4. I fight like a girl & was told girls shouldn't lift heavy or they would look like a man - Proved them wrong.
5. This might help me scratch off competing on my bucket list - Proving myself wrong. 
6. I workout with joint pain, fluid on my lung, cancer in my body, and damaged muscles from treatment. - Showing the world they can do this too.

I will continue to prove the stats wrong. I will be one to beat the odds. I will continue to fight this thing. I will continue to live as if these battles have not attempted to deplete me physically. I will continue to be the 1 of few girls in the weight room. I will continue to be one of the many stage 4 ladies who will not give up the fight. I will continue to turn to other women and men who have fought this beast and continue to push their bodies past their potential.

Action! Action!

These past three weeks have been incredibly busy & it has been nice to take a break from Cancer World.

1. We got a kitten, Arya aka Cat of the Canals. I am a huge Game of Thrones fan. Our kitten was found at 2 weeks in a gutter after her mother abandoned her & the rest of her family were carried away and eaten by hawks. She is the cutest, most curious, and biggest fighter. Her story is one of hope & reminds me much of the story of Arya in the Game of Thrones Books. 

2. We moved this week. It is nice to live in a larger place. I also cannot smell cigarettes lingering from other apartments. The fluid in my lung does not need anymore antagonists.

3. I went to LBBC Conference for Breast Cancer. It was a fun weekend with some of my local survivor friends. Helped me get a break from life but also have a weekend full of laughs.

On the treatment note, my frozen tumor was sent to Foundation One to study my DNA/Genome. The results came back & Cornell told me that there are some "actionable" mutations in my genes, which means there are treatments for those mutations to heal my DNA and to enhance the Anti-Hormonal Therapy I am taking. I will know more in a week. This is the newest type of tailoring Cancer treatment & I am excited that I get to be part of it.

All in all, things have been good. I will post more when things quiet down with unpacking.

Lessons Learned

This is a concept that can be hard to grasp. I desperately wish I had control over the outcome of mostly everything in my life, mostly my survival. The food I eat, the products I use and the vitamins I take are purely a way to stay healthy, but also a reflection of my fear of the uncontrollable - my health. I wish that lives were a guarantee and that death and sickness only happened when we all turned 90 and "it was our time." In my job and in my personal life I have seen too many people pass too young. There was nothing I could have done to prevent it no matter how much I wish I could have.

I look at the work I do - Therapy, specifically in Addictions. People commit suicide & overdose on drugs, we do our best and our hardest to prevent our fear of death, a loss of control, from happening. Sometimes we work harder than the people we care so desperately about to save them, but what we fear the most happens - the loss of a life.

I look at the women I know with cancer. I wonder why they didn't make it, why the fight was over. I wonder what did they do wrong?? There just is not an answer. There is never a reason for loss, but we desperately try to find one to give ourselves solace & silence our anxiety.

I look inwards at myself. My grandmother passed away from cancer when I was 15yr old. I watched a woman with such light and heart deteriorate before my eyes. I assumed that cancer was OUR fault as people, so I did not smoke. Smoking caused cancer, so I ran in fear. I literally ran, so I would live long and be indestructible. I wanted to live until I was 100 and not feel that pain. I wanted to save people from having to shorten their lives too quickly. I wanted control, I could not let go.

The thing is I need to let go, let god. I cannot live my life in fear anymore. I cannot analyze why someone did not "make it" anymore. The desire to control will slowly eat me away, take away my light and draw me further away from living life on life's terms. Honestly, no matter how many people I taught this to and how many years of therapy I had myself, this was a concept I did not grasp in my own life until maybe a few weeks ago. Having cancer can make you doubt what you did in your past and worry about every choice you make in the future.

If I am too focused on my future,  there will be so much I will miss out on. I need to take care of me in the present. That means to rest, "say no", and eat things that make me feel balanced. I will eat organic, gmo-free foods, because it makes me feel balanced. I am not running in fear. I will face my own demons head on.

The Truth Behind Pink

It is almost October. Breast Cancer Awareness Month is approaching and the stores are lined with products stamped with the pink ribbon. Magazine articles are filled with stories of hope of women who have been "cured." Granted most people do believe that breast cancer if is caught early is curable, BECAUSE of the Pink Ribbon and HOW AWARE WE ARE.

I have begun to despise Pink-tober, because society assumes  that by painting everything pink - we can make breast cancer pretty and we can make people think that this disease is full of women who have wonderful stories of hope. While that might be true, it is not always the case. In the last two months, I have seen the other side. I was diagnosed with Stage 4, which is a story with pain, little hope, and no pink ribbons or magazine articles for us.

The Reality of the Pink Ribbon
People have asked me - "How come you do not like the Pink Ribbon?" It is not that I do not like Pink, I actually love the color pink. Ribbons are cool too. Where the Pink Ribbon originated came from a good idea - awareness, which has suddenly become a marketing tool. The ribbon no longer stands for "donate money to research, " but now has become "hey, buy our product we support breast cancer." The meaning of the Pink Ribbon has lost its effectiveness & most organizations either cap how much they donate, barely donate anything or do not donate anything at all. Its shocking and most people do not want to believe it, but it is true.

People buy Pink Ribbons because Pink is pretty, its for a good cause & it gives people some sense of control over something that they feel they cannot do much to help. If you want to help I would suggest donating to organizations that actually help Breast Cancer (Metavivor, Bright Pink, and the Pink Daisy Project are some good ones). Pink Ribbons dress up breast cancer, make it feminine and make seem to be the "most acceptable" type of cancer. No cancer is acceptable. Breast cancer most of all steals us of that femininity and no pink ribbon can replace that.

What really makes me ticked about this ribbon is that it is on products that have ingredients that have been shown to correlate with cancer. It has been spattered on GMO Products, Paraben Filled Beauty Products, and toxins.  I think what kills me the most is seeing KFC buckets with the pink ribbon. KFC is far from cancer safe & is probably the worst thing anyone could ever eat next to Spam.

Stage 4 Cancer is NOT Pretty
Many of my Young Survivor Friends have been in magazines this month from Fitness, Self, Vogue, O, and Glamour. These are the first articles I have seen that did not make Breast Cancer pretty or pink (granted my friends are beautiful in these magazines). This articles were my first glimmers of hope that the realities of cancer are getting put out in the media. I am happy magazines are finally putting the awareness out there that women under 40 get cancer. Similar to women under 40, Stage 4 patients are a minority. I just wish that there was a way to get Stage 4 women's voices get heard also. Just like women under 40, Stage 4 women need awareness too.

Deep down I wish a magazine or an Awareness campaign would also look at us women who got cancer "caught early" and then got the blessing of having it recur again. I highly doubt this will ever get advertised as the general public wants to think that CANCER is treatable if caught before stage 4 & that it WON'T come back. Reality is 2% of research goes to Stage 4 Breast Cancer & 30% of the women who were "caught early" have cancer come back despite having standard treatment. There is no reason why cancer comes back. Treatments work for some & not for others. The main problem is that there is no cure & very little awareness of what happens behind that pink ribbon.

I asked women in a Stage 4 group what they wish was included in Breast Cancer Awareness month. I think the general consensus was to make the public aware of what we go through. That Cancer is not pretty, it is not pink, its not always filled with hope, and it is not feminine. These are our realities:

• Cancer related fatigue & physical pain despite looking healthy or OK
• There is no end in treatment, you will always be on treatment
• There is no cure, you have a better chance at death than being cured
• The FEAR of leaving husbands, significant others, family & children behind
• Being single & fearing dating due to having a Chronic, Life Threatening Disease
• Feeling like an outcast in some support groups & that when other survivors find out you are stage 4, YOU ARE THEIR WORST NIGHTMARE
• Dealing with thoughts of death every day
• Protecting loved ones from our impending deaths
• Employment issues, financial, & insurance struggles
• People telling stories about how their friend tried really hard with her battle and beat it cause she's a survivor
• Doctors losing interest because of the attitude that there's nothing they can do
• Loss of fertility & inability to have a family
• Body changes due to surgery & treatments
• Hair loss for the second time (which is traumatizing and might be permanent until the end) 

For Stage 4 cancer patients, we relive these traumatic cancer related side-effects not once, but twice and most likely on every new treatment. There is no guarantee that a treatment will work. We hope one will work & when it doesn't we go onto a new one, with sometimes worse side effects. We continue to get exposed to thoughts of death, watching our friends die, and having to live day to day with side effects we hoped would have gone away with our first "go around with cancer."  

My Reality
I wish I could end this on a good note but I can't do that. In the past I have tried to make light of my reality, but today I want you to become aware. Some people have heard me joke around that my rack will never sag or my body will never distort from having kids. Reality is, I miss my old chest & I wish I could have opted to get implants and not be forced to. Yes, I got fake breasts, but they look nothing like the ones you see on TV. Due to that surgery I have been blessed with permanent lymphadema in my left arm & have had a three year struggle finding clothes that fit. 

I also joke about having the freedom of not having children. I wish I had the choice to not have kids, but that was ripped away from me two months ago. I will watch my friends have kids & it pains me that I cannot even chose to be a parent. If I did have a kid, I do not even know how long I will be here to raise it. Reality as a Stage 4 patient, we live each day as it comes, do our best to stay alive, and hope this treatment is our path to NO EVIDENCE OF DISEASE.

If you know me personally and you are reading this, you are probably wondering where this came from. I might seem ok, but reality is I am not all the time. I do a very good job at putting up a front - "I am strong, nothing is wrong and I am doing OK". Most days I do OK, but I have to push myself to that point. I used to be full of boundless energy and positivity, but getting two cancer blows in 3yrs has changed me. I get tired easily. I cannot do too much in one day or my lymphedema will act up. I cannot exercise for longer than 45min or I get lightheaded. I used to workout everyday & getting myself moving 3-4x a week is a struggle. I have a hard time getting out of bed in the morning. I forget where I put things. I get annoyed easily. I get depressed easily. If I do too much in one weekend, my whole week is shot. Have I mentioned that I get hot flashes every 10min or so? The heat is intolerable, I flash or my arm swells. This is not what a normal 29yr old experiences. You can say "Yea me too," but until you walk a day in my shoes, you will never fully understand how hard this is. I just want you to try to understand. 

We all wish that the pink ribbon will give us a cure, but the campaign and Pink-tober is falling short of that. The more people mask the reality of cancer with a pretty ribbon or the color Pink, the less inclined people are to give money for a cure. Pink ribbons are the facade - "everything will be ok." Reality is everything is not always ok & we need a cure before more of us die from this disease.

Cancer & Sugar Connection

I have heard from many people, but no doctors, that cancer cells feed on sugar. It makes sense to me. When I was on chemo, all I wanted was sugar - cancer cells died  & they wanted what they needed to stay strong - sugar. I did not understand the connection three years ago, so I fed my cancer. I ate cakes, ice cream & whatever I could stomach - i.e. sugar and gluten filled treats. I gained weight & of course my cancer came back. I began to rethink this connection before my cancer returned. I really changed my diet 2yrs ago - the weight came off, I cut out sugar, & I felt better. Not one doctor told me to cut out sugar, so I wanted to find evidence that there is a connection with sugar and disease (not just diabetes). Recently, I decided to look around online to see if any big cancer sites could cite the connection, but most places said - "Just eat right." That could mean anything to the average person - eating right to one, might be eating three meals a day versus one. Eating right to me goes deeper than that so I did a little research.

Sugar is NEEDED to Scan for Cancer
Let us look at the PET Scan. PET Scans are use to monitor cancer metastasis in stage 4 patients & also to diagnose the extent of cancer in patients with early stage cancer. PET Scans require you to fast for 12-24hrs, drink a sugar laden drink before your scan & then you are injected with a radioactive tracer. I looked into the nature of this drink & tracer and found that - "At present, however, by far the most commonly used radiotracer in clinical PET scanning is fluorodeoxyglucose (also called FDG or fludeoxyglucose), an analogue of glucose that is labeled with fluorine-18. This radiotracer is used in essentially all scans for oncology and most scans in neurology, and thus makes up the large majority of all of the radiotracer (> 95%) used in PET and PET/CT scanning." It seems like FDG and the sugar drink attach themselves to the cancer cells, so they are lit up in the scan.

If PET Scans need sugar to show where cancer lives, it would make sense to conclude that Cancer Cells are attracted to sugar. Knowing this drove me to do more research. I found that in 1931 Nobel laureate in medicine, German Otto Warburg, Ph.D., first discovered that cancer cells have a fundamentally different energy metabolism compared to healthy cells. The crux of his Nobel thesis was that malignant tumors frequently exhibit an increase in anaerobic glycolysis -- a process whereby glucose is used as a fuel by cancer cells with lactic acid as an anaerobic byproduct -- compared to normal tissues. It has been almost 80 years since this conclusion has been made & the only thing standard medicine has used it for is PET Scans.

My next question is why don't traditional cancer therapies incorporate better, more in depth nutritional guidance by teaching us regulating blood-glucose levels via diet, supplements & finding more nutrient rich foods for patients who lose their appetites versus advising people to eat ice cream or milkshakes to keep on the weight. Over the last three years, I learned that most patients need professional guidance and education to understand it is not just standard treatment that will keep their cancer at bay, it is what we put into our bodies. The quest is not to eliminate sugars or carbohydrates from the diet but rather to control blood glucose within a narrow range to help starve the cancer and bolster immune function. This would just mean a simple education on the glycemic food index & also educating people about healthy, complex carbs/sugars versus simple/processed sugars.

Types of Sugar

• Dextrose, fructose, and glucose are all monosaccharides, known as simple sugars. The primary difference between them is how your body metabolizes them. Glucose and dextrose are essentially the same sugar. However, food manufacturers usually use the term "dextrose" in their ingredient list. 
• The simple sugars can combine to form more complex sugars, like the disaccharide sucrose (table sugar), which is half glucose and half fructose. 
• High fructose corn syrup (HFCS) is 55 percent fructose and 45 percent glucose. 
• Ethanol (drinking alcohol) is not a sugar, although beer and wine contain residual sugars and starches, in addition to alcohol. 
• Sugar alcohols like xylitol, glycerol, sorbitol, maltitol, mannitol, and erythritol are neither sugars nor alcohols but are becoming increasingly popular as sweeteners. They are incompletely absorbed from your small intestine, for the most part, so they provide fewer calories than sugar but often cause problems with bloating, diarrhea, and flatulence.
• Sucralose (Splenda) is NOT a sugar, despite its sugar-like name and deceptive marketing slogan, "made from sugar." It's a chlorinated artificial sweetener in line with aspartame and saccharin, with detrimental health effects to match.  
• Agave Syrup- falsely advertised as "natural," is typically HIGHLY processed and is usually 80 percent fructose. The end product does not even remotely resemble the original agave plant.
• Honey is about 53 percent fructose², but is completely natural in its raw form and has many health benefits when used in moderation, including as many antioxidants as spinach. 
• Stevia is a highly sweet herb derived from the leaf of the South American stevia plant, which is completely safe (in its natural form). Lo han (or luohanguo) is another natural sweetener, but derived from a fruit. 

If you had to pick a sugar - stick with Cane Sugar, Stevia or Honey. 
 
The Glycemic Index
Average people do not care about this. Most people thing of sugar as table sugar, but it is everywhere. We need to become more informed about what we put into our bodies by reading labels or steering towards whole foods. I have found it is just easy to steer myself towards natural, whole foods with lower sugar, but I also looked into various Glycemic Index Charts online. I found two that are helpful. A general rule of thumb - if it is white sugar, white bread, came in a package, comes in a syrup, has corn syrup, high fructose corn syrup, did not originally come in that form, has ingredients that you cannot understand/are not real foods, or has more than 5 ingredients, it is NOT HEALTHY . We can assume that vegetables, fruits, and most whole grains/beans are of lower glycemic index, because no sugar is added & it is easier for us to digest.

The glycemic index of fruits can also be dangerous, some fruits are higher than others and its good to know what fruits to eat in moderation due to the fructose content.

Sugar a Culprit to Disease

The single largest source of calories for Americans comes from sugar—specifically high fructose corn syrup.

• In 1700, the average person consumed about 4 pounds of sugar per year.
• In 1800, the average person consumed about 18 pounds of sugar per year.
• In 1900, individual consumption had risen to 90 pounds of sugar per year.
• In 2009, more than 50 percent of all Americans consume one-half pound of sugar PER DAY—translating to a whopping 180 pounds of sugar per year!

Sugar is loaded into your soft drinks, fruit juices, sports drinks, and hidden in almost all processed foods—from bologna to pretzels to Worcestershire sauce to cheese spread. And now most infant formula has the sugar equivalent of one can of Coca-Cola, so babies are being metabolically poisoned from day one of taking formula.

The increase in sugar has led to an increase in diseases in young & old. The incidents of Type 2 diabetes, obesity, depression, hypertension, cancer, and other inflammatory diseases have increased significantly over the last 300yrs & have become more prominent in young people. In the past, these were diseases that were for the old or were so rare they were not considered to be an epidemic. In 2013, diabetes, obesity, hypertension, cancer, autoimmune diseases, inflammatory diseases, and mental health issues have become an epidemic. I found that most of these diseases are due to our changes in lifestyles and the fact that we have become dependent on sugar. There are at least 72 diseases that are connected to excessive sugar consumption. This website kindly lists everything sugar consumption can lead to: 141 Sugar Related Diseases.


SUGAR IS A DRUG
Sugar addiction is the term for the relationship between sugar and the various aspects of food addiction including: "bingeing, withdrawal, craving and cross-sensitization". Some scientists assert that consumption of sweets or sugar could have a heroin addiction like effect. I would suggest reading this: Sugar is A DRUG. Sugar has been found to be as dangerous as excessive alcohol, tobacco use, and street drug use. I am sure after reading that article you might start to think that the sugar is "Tricking" you into thinking you need it, because you now are dependent on it. You have become a slave to the sugar and you are now compromising your health just to get your sugar rush.

Sick & Young...

I recently watched this movie - "Fat, Sick and Nearly Dead." It was a documentary about a man in his early 40s struggling with Urticaria (an autoimmune disease characterized by hives due to having too many histamines in your body  due to constant exposure to inflammation). This man was on many medications, but for 60days he changed his diet with nutrient rich foods - vegetables & fruits - combined with exercise. Within 60days he was off most of his medications & lost nearly 40lbs. It is amazing the power of natural foods.

I was always sick. I always had ear infections or bronchitis as a kid, which would leave me bed ridden for days. I struggled with acne well into my 20s. I had dysmenhorrea at 16. I struggled with asthma, allergies, and IBS from 22-26. All of these treatments were with medications. Medications that potentially poisoned my body. No one looked at the food I was eating or how I was damaging my body with Accutane, Birth Control, tanning, diet soda, & processed foods. The madness continued and I was diagnosed with anemia at 25, cancer at 26 & Celiacs at 27. Granted, I have always been active and ate "healthy," but I was not perfect and my old "healthy" consisted of low fat, diet soda, processed frozen meals & sometimes whole foods. I was more fixated on a calorie and fat intake than I was about the overall nutritional content of the food. I am sure my cancer was not 100% caused by my food choices, but I am sure that eating an "American diet" for 26yrs played into me being a risk for developing a chronic illness before 40.

Over the last 3yrs, I have really cleaned up my diet. I eat a diet of primarily organic foods, green smoothies, veggies at every meal, no soda, no processed foods, & gluten free. I am no longer anemic & I have healed my colon, so there is proof that changing our diet works.

The reason why I chose to post this picture, because I have met too many young people afflicted with cancers, autoimmune diseases, heart disease, and nutrient deficiencies. Typically you do not see sick young adults, but more & more young people are getting diseases that typically afflict the elderly. These are diseases that have to do with what we eat - wrappers, fast food, and diet/low fat crap fill our cabinets & stomachs. American diets are fixated on quick-fixes, affordable, easy access, and of course weight loss. Time & Time again I hear many excuses.  

The most common excuse is- "Healthy food is too expensive." Processed-diet food is too expensive, but raw fruits & veggies, beans & grains are actually more affordable than diets consumed with meat, processed foods, soda, and snacks. I will spend 50-80 a week at the grocery store pending on if we need cleaning products. I also shop at Whole Foods, so imagine what it would cost if I shopped at a less, high chain store.

Another common excuse is - "I do not know what to do with it." I have learned that with cooking, recipe books, blogs and networking with healthy-minded peers on pinterest have helped me find more vegetable based meals. A lot of my recipes I have found are on my Pinterest Board. I have also learned to sneak vegetables into every meal to help transition my boyfriend (whom was raised on meat & potatoes) to eat beans & veggies at almost every meal. It is not exactly easy for me to prep dinners & lunches. I work two jobs & three days I work 13hr shifts and my boyfriend works in NYC and will sometimes pull 60-70hr work weeks. We will make meals that will enable us to have left overs or meals that can be frozen and thawed to use on nights where we need to cook in a pinch. I also have a few "go to" meals that we eat when I have no time to prep food.

The last excuse is - "I have no time to  exercise." I make time to exercise 3-5x/week. With exercise I aim to get 1.5hrs on my days off from work & if I miss one of those days I will squeeze in 30min before working. This can be walking, weights, running or weight lifting. I have found that either before work at 5am, after work, or only on my days from my 13hr shifts work for me. You just need to look at your week & plan out time. I coordinate this with my boyfriend, so chores get shared & if we did have kids that too would get split, so I can fit in exercise & he can fit in his alone time.

If you are reading this you might think - "This girl has cancer again, so how does she know that diet will help her." My cancer came back, because the damage has already been done when I got the cancer in the first place. Cancer is due to DNA changes & mutations in our cells, which results from inflammation, PH imbalance, exposure to toxins & even genetics. In my case one cancer call could not be killed by traditional chemo & it mutated again. Once a cancer cell forms & cannot be killed, it can stay alive regardless of what choices you make. This is not stopping me from eating right. Now it mutated, I am fighting it again in the best way I know - treating my body right, staying fit, keeping active, and keeping my stress threshold low. What is now different from 2010 at diagnosis to where I am at now, is that over the last 3yrs I have chosen to delve deeper into other dietary issues that lead to disease & inflammation. I have read many books, blogs, watched documentaries and have seen many specialists & I will continue to read & learn.

When I refined my diet, I made a few small changes at first. When you start eating healthy these are some easy ways to start:

• READ LABELS - No Hydrogenated Oils, No High Fructose Corn Syrup; No Canola Oil; No Corn Oil; and make sure your products are not made from GMOS (Genetically Modified Organisms). What is a GMO?

• Remember 1 fruit, 1veggie at every meal & if I snack its either fruit, veggie or bean based. 

• Green smoothies!!! I have a Nutribullet & I swear by blending my fruits, veggies & nuts everyday Green Smoothie Ideas!  

• Remember the DIRTY DOZEN when it comes to buying organic. I prefer all organic fruits & vegetables, because they taste better to me.  

Cornell Consult

I have not posted in while, I needed a break from Cancerland & the internet.

This past Wednesday I went to Cornell to see Dr. Valdhat to have a consult & discuss her Copper Study. I am not eligible for the study at this time. I need to have no evidence of disease, which means no tumor markers - mine are 221 & they need to be under 30. She also said no evidence of the effusion on a scan. Considering I have to wait to be a part of that study, she did give me a good second option.

1. She said that I am on the right medication - Femara, with Lupron. She said that the only thing she would change is having the 1mo Lupron & also getting my hormone levels tested monthly.
2. She was very happy I have been on the Zometa every 6mo & told me to continue that to prevent bone metastasis & osteoporosis
3. She said all my supplements were good & that NOTHING (unlike Tamoxifen) interferes with the effectiveness of Femara.
4. She wants my tumor markers & scans done monthly at first b/c I had no symptoms, so I have to rely on scans & bloodwork.
5. She reported that its RARE for my type of cancer to come back that quick & without symptoms.
6. She was shocked at how much I exercise considering the fluid in my lung, but said to keep doing what I am doing.

All of this she will be emailing to my doctor & it is pretty much the exact same things he wanted to do. I am happy they are both on the same page.

She did recommend something different, which is getting my original tumor (which is currently held in lock down at Sloan Kettering) sent out for testing. She is sending to this place called Foundation One. This place tests for genetic abnormalities beyond getting the usual BRCA1/2 bloodwork. It also tests to see why my tumor was resistant to Tamoxifen & what hormonal or chemos or targeted therapies would help enhance my survival. She said it should be a month before I get those results.

The appointment went well. It is my last cancer related doctor's appointment until Oct 1, when I will get my follow up CT scan. Naturally I needed a break from the blog & cancer for a bit. Over the next week, I will be back to posting about Supplements, Cancer Studys & ways to prevent or enhance your treatments.

Supplement Sunday

Spirulina

What is Spirulina?

Spirulina was the first "strange" supplement I started ingesting when I changed my diet post cancer. It is green. It smells funky. Despite how strange it looks, it can be easily blended into any fruit or vegetable smoothie & has amazing health benefits.

Spirulina is blue green algae & group of organisms found in the ocean and sometimes in fresh water lakes. They are among the most nutritious plant-like organisms known to humans. Spirulina has the highest concentration of digestible vegetable protein with a perfectly balanced combination of essential amino acids. 

What are the Health Benefits of Spirulina?

• Spirulina is protein and contains amino acids including the essential fatty acid gamma linolenic acid (GLA) which has significant anti-inflammatory properties.
• Spirulina contains Omega 3-,6 and 9s and is especially high in Omega-3s.
• Spirulina is extremely high in Chlorophyll, which helps remove toxins from the blood and boost the immune system.
• Spirulina has a very high concentration of bio-available iron and is excellent for those with anemia
•  Spirulina is a great source of other nutrients including: vitamins B-1(thiamine), B-2 (riboflavin), B-3(nicotinamide), B-6 (pyridoxine), B-9 (folic acid), vitamin C, vitamin D, vitamin A and vitamin E. It is also a source of potassium, calcium, chromium, copper, iron, magnesium,  manganese, phosphorus,  selenium, sodium and zinc.
• Spirulina is also incredibly high in calcium with over 26 times the calcium in milk.
• Some research has suggested that Spirulina may be helpful in allergies and allergic reactions.
• Emerging evidence suggests that it binds with radioactive isotopes and may be useful for  radiation therapy.
• Spirulina can bind with heavy metals in the body and help remove them.
• Spirulina can increase fat burning during exercise & help maintain muscle composition
• Spirulina also helps purify the blood & works as an anti-cancer agent

How do you take Spirulina?
You can take 1tsp straight in a glass of water, but it tastes like pond scum. If that is for you, I would suggest go for it. I take mine in a daily green smoothie - 1tsp of Spirulina mixed with a cup of leafy greens & frozen bananas and berries with either water or almond milk. I recommend using it in smoothies. You do not have the taste & get all the benefits. I have been doing spirulina for 1yr 9mo & my skin, hair and nails show the effects it has had on my body.

Where can you buy spirulina?
Vitacost or Amazon sell different brands of spirulina. I prefer Nutrex's brand, which is affordable & mixes well.  

 

Our PH Levels are just as important as pool water!

Similar to Inflammation, a pH imbalance in our bodies can lead to health issues. I never even thought about the pH in my body. I always assumed that we just needed to test the pH in our pool water. If our bodies are made up of mostly water, it would make sense that having a balanced pH is important.

What is pH?
pH (potential of hydrogen) is a measure of the acidity or alkalinity of a solution. It is measured on a scale of 0 to 14—the lower the pH the more acidic the solution, the higher the pH the more alkaline (or base) the solution. When a solution is neither acid nor alkaline it has a pH of 7 which is neutral.
Water is the most abundant compound in the human body, comprising 70% of the body. The body has an acid-alkaline (or acid-base) ratio called the pH. The body continually strives to balance pH. When this balance is compromised many problems can occur. We are talking about the pH of the body's fluids and tissue. Imbalance of your acid-alkaline ratio and low pH, inflammation occurs, disease occurs and our body's tissues, fluid & organs suffer. 

A diet with too many acidic foods & too low pH can lead to:

• Cardiovascular damage, including the constriction of blood vessels and the reduction of oxygen.
• Weight gain, obesity and diabetes.
• Bladder and kidney conditions, including kidney stones.
• Immune deficiency - Celiac Disease
• Acceleration of free radical damage - I.E. CANCER
• Hormone concern - I.E. HORMONAL CANCERS (BREAST, OVARIAN, PROSTATE)
• Premature aging.
• Osteoporosis; weak, brittle bones, hip fractures and bone spurs.
• Joint pain, aching muscles and lactic acid buildup.
• Low energy and chronic fatigue.
• Slow digestion and elimination.
• Yeast/fungal overgrowth.

As you can see most infections & diseases are due to too much acid. Yes, you can treat these issues with a bandaid medication like a antibiotic, chemo, aspirin etc, but I also say treat the root cause - DIET. I would say aim for a 80-20 ratio of alkaline (80%) and acidic (20%) foods in your diet. 

What foods to Eat?

How do you test your pH?

The same way you would test a pool's pH. You can use pH strips to test your urine (GROSS) or saliva. Easy peasy.

In addition to a correct diet, a good supplement plan helps keep your pH balanced. When I was diagnosed with Celiacs, I started a supplement plan to balance pH & help treat my autoimmune disorder. I also recommend a daily green smoothie to help restore pH levels. I smooth frozen bananas, blueberries & mangos with 1cup of kale, 1cup of unsweetened almond milk & almond butter with spirulina, flax, psylium husk, and peanut butter(acidic).

Supplements to balance pH:

1. Digestive Enzymes - 1 Tablet before each meal
2. Magnesium Complex - Natural Calm Powder 2tsp before bed
3. 1tsp of Spirulina or Chlorella daily in vegetable based smoothie
4. 1tsp Psyllium Husk Powder daily in vegetable based smoothie
5. Vitamin D3
6. Omega 3 - Chia Seed 1tsp & Flax Seed 1tsp
7. Calcium 1,000mg

Inflammation & Cancer

I have always been interested in medical issues. My interest grew after my aunt was diagnosed with Ovarian Cancer in 2009 & then I was diagnosed with Breast Cancer in 2010. You can imagine how many books I have read, websites I have scanned and blogs I have been reading. The main thing I have learned is that we know that cancer is the abnormal growth of cells. Our cells multiply in two ways hyperplasia (proliferation of cells - i.e. growth of more cells & they duplicate) and hypertrophy (they grow in size). A easy way to remember this is that organs grow by hyperplasia & fat/muscle grow in hypertrophy. When any of these cellular growth patterns are interrupted, inflammation occurs. For cancer, we are primarily concerned with the cellular growth of organs/glands where cells start to grow abnormally. This can & usually is triggered by an antagonist. One of which is inflammation.

One might think that inflammation is a bruise, a broken bone, a pimple, but it is really more than that. Everyday we expose ourselves to chemicals, foods, and environmental factors that cause inflammation. In some people, this is a slow slow development that can lead to more treatable diseases such as - autoimmune diseases, migraines, etc. In people like me, it was a quick development that lead to cancer. I also developed an autoimmune disease due to exposing myself to inflammatory triggers, so I also have Celiac Disease coupled with Breast Cancer. Given that I live each day with both of these diseases, I learned that BOTH are triggered by inflammatory antagonists. If you are never made aware of the triggers for inflammation or understand the connection between inflammation & your ailments, you will continue to eat and expose yourself to these toxins.

Granted if you really think about it, the foods that cause inflammation are a LARGE part of the American diet. Most restaurants DO NOT give a great selection of healthy foods. This would mean that you will have to make your own food. Frozen diet meals, low fat anything, and anything that comes out of a wrapper with more than 4-5 ingredients SHOULD not be consumed. A diet comprised of whole fruits & veggies, unprocessed grains (that means gluten free), and limited dairy consumption is a diet that helps reduce inflammation. Alcohol also is a HUGE factor for inflammation. Limit your consumption to almost NEVER. It has no nutritional value & has empty calories. I save my drinking for special occasions & stick with 1-2 drinks with a TON of water.

Inflammation leads to abnormal cellular growth - i.e. cancer. It has also been connected to Celiacs, Chrons, Thyroid Disorders, Migraines, Obesity, Menstruation Issues, Infertility, Arthritis, Joint Pain, and Rheumatoid Arthritis. If you notice that your diet is mostly on the right side of that image, think about what ailments you complain about. Do you have headaches often? Pain often? Sick often? Allergies? Intestinal Issues? Cancer Scares? Do you find it hard to have enough energy? Do you find it hard to lose weight? All of these issues are linked to WHAT you choose to put in your body. Remove the inflammation causing foods, you might find that your symptoms are getting better & more manageable.

I am not saying that cancer is 100% caused by inflammatory foods, but IT IS A FACTOR. You can say - well I am healthy and I exercise or no one in my family had breast cancer. Here is a reality check - I am and always was physically fit. I have low blood pressure, low cholesterol, and have always had what I assumed was a healthy diet. I rarely got sick & I do not have a cancer gene. It can happen to you, so take a look at what you are consuming and you might find that it is not as healthy as you assumed. This will be the first of many blog posts about different factors that can lead to cancer & different foods to help enhance treatments for disease and cancer.

Remember my diet is not perfect, but I eat 80% vegetarian. I cannot eat complete vegetarian, because I have done it right in the past and ended up with severe vitamin deficiencies (anemic, low vitamin d3, low creatine). That is me, but most people can go full vegetarian or vegan. I eat meat 1x/week and dairy 1x/daily. I make sure that my chicken, steak, eggs & turkey is organic, grass fed. I make sure my milk & cheese are not made from cows given RBH (see my page on food & cancer) and are from grass fed cows. If I eat out or at other people's homes I try my best to stick with the veggies & beans OR I bring my own.

Changing up my blog.

I want to focus my blog also on getting the word out about what I have learned about cancer. I started 3yrs ago with tabs about food & cancer and parabens. I have learned so much more, so keep an eye out & those posts will be coming.

Am I getting better?

Dearest Hormones,
   Please be shutting off. You are trying to kill me. Thanks much.

Caitlin


I think the Lupron injection is working. My breathing was not so good 3 weeks ago - I would get shortness of breath if I talked too fast, walked up a flight of stairs, and exercised beyond "normal." I have noticed that my heart is no longer racing from walking up stairs, I can talk and not feel like my left lung collapsed & I can sleep through the night without coughing. This must be a sign that one of my medications is starting to work & kill the cancer babies. I also was able to do 30min of straight cardio yesterday and squats without getting shortness of breath. This is actually big news for me. Three weeks ago, I felt I was getting worse because my symptoms were actually worsening. I am starting to feel normal.

I really hope that this is it. I start the second medication in 3 days. I hope Femara + Lupron shuts down my evil hormones & kill the cancer babies.

I am also getting a second opinion at Sloan next week & a third opinion at Cornell the following week. I hope they all agree that taking Femara & Lupron is the best treatment. I do not want to have surgery. I do not want to do chemo. I do not want a port. Please give me a chance to beat this without going through the nightmare I went through in 2010. 

If slow wins the race, why am I so frustrated.

I AM NOT USED TO GOING SLOW. I like to drive fast. I do not see the point in walking if I can run. I prefer to multitask, so I get done quicker. I have learned that driving fast leads to speed tickets & thankfully I have given that up. I like money more & prefer saving then spending on traffic fines. At work, I am used to being a super-human...I am accepting that I can relax & go slow. This I am okay with.

I am not okay with NOT running. I have not ran since I first learned about the fluid on my lung & when I was cleared to run (i.e. we knew this was not pneumonia) my lung hurt too much to run. I hate walking. I have to figure out how to accept that this is a change, maybe not permanent, but at least for 2 months. I also cannot do plyometrics (i.e. burpees, squat jumps, box jumps). I feel weak. I cough like a smoker when I try to do these things & I feel old. Not 29 old, but 79 old. 

How can I accept this? Someone told me to try walking, so I did. I walked to my gym (which is a first) as it is only 1mi away. I realized in that walk that I must be a lazy bum for not walking there for the past 2yrs. I not only got in some cardio, I got to listen to music and enjoyed the weather. I wanted to run, because I did get bored. I just need to find something positive in walking and accept what I can versus cannot do. I can lift weights & walk. So I have been demoted to normal. No longer super exercise chic running 5+ miles and lifting weights with plyometrics. I walk like a normal person. Ugh. Whatever. This will have to do.

Keep the Good News Coming

Sorry, I have been a little wrapped up in NOT being a professional patient. On Tuesday, my doctor called & my bone scan was clear. All my scans look good & before I met with my doctor on Wednesday all I was looking at was a pleural effusion & two rouge nodes.

At this point, I was still very confused as to how my cancer just appears in fluid with no tumor. I should be greatful that I caught this early, but it felt strange. This is how it happened. My tumor was fueled by estrogen, which we assumed was birth control & environmental toxins. It was removed November 2010. Apparently all tumors like to spore cells to create more tumors, tumors do not like to live alone, they spore like fungi and like to create colonies. My tumor was resistant to chemo - a little cell (spore) lived despite getting blasted with Red Death (Epirubicin) & Agent Orange (Cytoxan). This little spore withstood 12 weeks of taxing Taxol that stole my eyebrows, but did not kill this cell. This cell lived on dormant until my ovaries (which apparently hate me) decided to turn back on 6 months after chemo. My ovaries are apparently super human & pump out more estrogen than I can even imagine. My ovaries fed this little cell estrogen & it decided it would travel to my chest wall and hang out in between my chest wall & lung. Slowly my cancer grew, slowly it created inflammation and fluid. The nodes are not cancerous in the scan, but are a reaction to the fluid.

There you go folks this little spore joined up with my ovaries in an attempt to try to beat me down. I have a plan & too bad I will kill you both.

On Wednesday my oncologist told me my first line of defense for a Stage IV reoccurrance is with anti-hormonal therapy. Tamoxifen did not work for me, well it helped me be grumpy and bloated, but it did not do anything for not feeding estrogen to my cancer. Now, we shut off my ovaries. I was given a shot of Lupron & will start Femara (my new anti-hormonal) in 27days. Lets hope this works to starve out the cancer. I see my oncologist for follow-up on Sept 4th. I have to get my tumor markers measured every month & a CT Scan of my chest every 3mo. Tomorrow (my 29th birthday) I will get my baseline tumor markers.

In the meantime, I had to call my ObGyn Oncologist to consult about removing my ovaries and forcing me into menopause at 29. I see him on August 27. I also had to schedule a second opinion consult with Dr. Linda Valdhat at Cornell, whom specializes in metastatic breast cancer. She is also doing a promising study with Stage IV Breast Cancer patients whom are No Evidence of Disease, which has been very promising. This study controls and monitors the copper in our bodies. After hearing that one woman is 4yrs with no disease and another is 6yrs, I really want to see this doctor.

I would like to have no signs of cancer again & if I have to be a professional patient again, I will.

Good News at 9am

My doctor is out of the office until Monday, but his nurse practitioner called me this morning to report that my Brain MRI is NORMAL & my CT of the Abdomen & Pelvis is NORMAL. This is good news. The tissues of all my organs are healthy. The only current visible signs of concern is the Pleural Fluid in my left Lung and 2 Lymph nodes behind my chest wall - 1.7cm & 2cm, which hasn't changed since I got the Chest CT on 7/17.

I am still waiting on my Bone Scan results, but I got that done later in the day yesterday & I am assuming that it can take a while to read a bone scan, which has all 206 bones in my body. Keep Praying for me!

I also have to add that my work has been awesome through all of this. My coworkers rallied together and have helped me lower my lode at work until I have my treatment plan & also until I get back from vacation on 8/19/13. Also my work is having people donate sick/vacation time to me just in case I might need it for treatments or surgery. I am very greatful I am blessed with working for such an amazing agency. It helps working with Mental Health Therapists, they really show their empathy and compassion when the time gets tough for us. I hope one day I can show them how much I appreciate all of their help & kind words.

Stupid Cancer

On 7/29/13, I learned that my disease came back. Doctors tell us that we do not need scans & to look out for symptoms. I had NO symptoms. My mets diagnosis was a fluke. I got an EKG done at my new Primary Doctor & I had an extra heart beat, which has happened before. She sent me for an echocardiogram just to follow up on all the cancer treatments I had and the extra heart beat. The echo found fluid on my lungs. I was sent for a Chest CT to clarify what the fluid was & my oncologist sent me to get the Fluid biopsied. The fluid came back positive for Breast Cancer. At that time, I still had NO symptoms and no visible tumor or sign of cancer on my Chest CT. Now... the journey starts again. 

Today I went for a CT of the Abdomen & Pelvis, Brain MRI, and Bone Scan. I won't know the results until Wednesday, but I am trying to stay in the moment. I tell my clients to take their recovery "One Day at a Time," but when you actually are forced to do it, it is the hardest. 

This Stage IV diagnosis has been harder than the first. I took the first with stride. I knew stage 2 was curable. I know Stage 4 is a chronic disease, that can be cured, but it is much tricker than that. You start to worry about what you could have done to prevent this. I contemplate the poor choices I made in my past. Did I get cancer, because:
   1. I was being fed Birth Control pills for PMDD & cramps that would leave me parylyzed. (how the hell did I        know that cancer is fueled by estrogen, I thought only unhealthy people got cancer)
   2. From 18-23 I liked tanning, I did not like sunblock & I had a good tan. I still went to the beach after cancer, maybe it is the sun's fault (wait, I do not have skin cancer)
   3. Maybe it is because for a while I liked to drink & drinking liked me, but honestly if that caused it than every person under 30 would have breast cancer
   4. Maybe it is because I ate like crap ... that was almost 6yrs ago
Granted there can be no cause for this. WE ALL HAVE CANCER CELLS IN OUR BODIES. Mine just got turned on. My body was my temple, but my body fought back. Now, I have to fight the cancer. 

Do not get me wrong, I have spent the last 4 days concerned about my future. I know I will never be able to bear a child. That honestly does not bother me, I can adopt or get a surrogate. The thing that bothers me the most is worrying if I will marry my boyfriend, get old with him, and actually get a gray hair before my body stops working. 

This is my reality. This is what living with Stage IV cancer is like. This is why I have to live in the present. I cannot worry about what next week will bring. I need to stay mindful and focused in the present & the only things in my future I know is that:
  1. I will see my doctor & I will have a plan by next Wed
  2. Stage IV cancer will not stop me from LIVING - I plan on traveling and living as normal of a life that I can live
  3. I will always love my Kyle, my family & my friends
  4. That I will always be myself
Everything else is truly a wash when it comes down to it. 

A good friend of mine, who has Stage IV cancer, told me we are 3D. It does not mean the end. We will even wear 3D glasses to chemo to make a point - Stage IV does not mean death. There are plenty of documented and undocumented cases of people beating this, being cured for years, or even LIVING with mets. 

Wish me luck