Cancer and fatigue

As a cancer survivor myself I can tell you that the fatigue associated with treatments and after treatments is no joke!  Fatigue can sneak up on you and knock you off your feet!  Other times you could feel great to start and 1/2 way through doing something physical you feel exhausted.  There are some days I feel like I can sleep on and off all day.  Why does this happen?

Well there are medical, physical and emotional causes of this fatigue.

Medical causes should of course be gone over with your treatment team of doctors.  Medical causes could be anemia (low red blood cell count), infection, dehydration, electrolyte imbalance, malnutrition, medication side effects.  You should always be honest with your medical team and inform your oncologist or nurse if you experience this.

Physical causes of cancer related fatigue are the obvious over-doing it, pushing yourself, normal mom duties, but can be organ dysfunction, deconditioning (lack of physical exercise) due to bed rest, inflammation from treatments or medication.  Inflammation is a big issue for proper health and maintaining remission of disease.  Inflammation is a beast and I will go into that issue further in a future blog post.

Emotional fatigue can feel like you are tired to your bones.  Emotional fatigue can be caused by the obvious: stress, depression, fear of reoccurrence, fear of death, brain fog from chemo or radiation.  A cancer patient is flooded with what feels like a ton of emotions and thoughts, fears when we are diagnosed, hearing about treatment plans, surgeries and trying to cope or learn how to live after treatment.  Not to mention the stress we feel about the change in life and finances that are associated with it.

The general public doesn't seem to understand that fatigue is not a joke, it's not an excuse.  For a cancer patient or survivor it never goes away.  I have been dealing with cancer since 2011 and even now I find myself exhausted over seemingly simple exercises that didn't exhaust me before.  This change is frustrating. I still feel somewhat "young" but my body acts "old".  I spent the day at Disneyland with my family and the next day I was so tired I spent the day binge watching T.V. and napping.

As hard as it is to get used to, cancer fatigue needs to be taken seriously and you have to give yourself permission to rest, take it easy, nap.  Your body needs it, your health needs it.  Listen to your body when you need to rest, then sit back, get comfy and go for it.

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Don't let cancer be the boss of you!

Ok you may have cancer, but does cancer have you?  There is a big difference in how you think about this, and it is very true when the doctor's say that positive thinking is a powerful tool.  I will be the first person to tell you cancer effing sucks!  Dealing with cancer is not for the weak, it's hard, it's awful, it hurts, you feel sick, no one wants it.  But here's the thing my body may have cancer, meaning it is in fact inside me, or has done damage to my body.  I have it, it doesn't have me.  I am the one in control, not the cancer.  Yes cancer has limited my mobility and energy and all that BUT it doesn't stop me.  I might take it easy or it might make me take a pause on some things but overall I am not stopped, and it doesn't control me. 

How can you stop cancer from bossing you around?  I'm glad you asked.

1) Realize that you are in fact in control.  Who is calling the doctor?  The cancer?  No.  You are.
Who is choosing the medical treatments to fight this disease the cancer?  No.  You are.
Who is putting food in your mouth?  You Are!
You are in control.  So you tell the cancer inside you to back the Eff off and die.  It is a little bitch that has got to go!  You are in control not the cancer and you need to say it.  Say it every day in your head, out loud, in the car, in the shower, whenever and wherever you need to, to remind yourself and the cancer that you are in control.

2) Focus on foods that boost your natural body immune system, take vitamin supplements that target your specific cancer or support the immune system in general.  Take the time to learn if your cancer has any hormone connection and then stay away from hormone rich foods and supplements. (I.E. estrogen and soy products for ovarian or breast cancers)

3) Enjoy life.  You woke up today right?  Enjoy it, don't let cancer rob of you of a beautiful day.  There is ALWAYS something to enjoy or be thankful for.  You just need to find it.

4)  Take control of your medical care.  You have to be your own advocate or have someone close to you advocate for you.  Doctor's are overworked and overwhelmed and can't always give every patient 100%, so do your own research, ask questions, look into non-traditional treatments, herbal, Eastern, etc.

5) Spiritual.  Take time to feed your soul.  Our emotions are tied to our body and greatly affect our healing.  Find ways to feed your soul, a nature walk, sitting by the duck pond in the park, meditation, yoga, prayer, church, animal therapy, painting, watching the sunset.  Balance isn't myth, it is important, and more importantly it is healthy.


Next time you say, "I have cancer."  I want you to say, "I have cancer... but it doesn't have me!"

Dig deep and find that stubborn 2year old inside of you who threw a tantrum on the floor and use her to remind the cancer of who is really in control of you!  You are!

Getting your sexy groove back after/during cancer

It's important as adults that we feel vibrant and sexy, especially as we start to age.  For me, when I lost my right breast to cancer I didn't feel less than a woman.  Sex and feeling sexy was the furthest thing from my mind.  However, as a married woman I was worried my husband wouldn't find me desirable and sexy to him.  After all my 4 year old son already said I looked like a boy with my head buzzed from the chemo, I had one breast and scars all over.  I felt like shit so I must have looked like shit too!  Well I did put make-up on every day and tried to be "cute". 

I was determined not to give in to the ugliness of cancer if I could help it.  So I bought fun earrings, wore my make-up, got a great red lipstick, painted my nails and just tried to look as "normal" as I could not only for my children's sake as they were little but for myself as well.  You often hear that if you look good you feel good, there is even a cancer charity named that.  There is truth in that statement, I have experienced it in cancer, and other illnesses or injury.  Your sexy worth should not be defined by the hair on your head, or lack thereof.  Bald can be beautiful!  For both men and women.  Bruce Willis looks great!  Amber Rose is rocking it!  So are many of my fellow cancer friends.  Gorgeous!

Pin-ups for Cancer is a wonderful group I belong to here in California and they host a pin-up photo shoot for survivors and their families or caregivers and it's a blast!  So many women are treated to being pampered with hair and make-up being done by professionals and getting dressed up and having fun.  For many this is the first time in months that they have felt sexy and it is beautiful to see these women re-discover their beauty. 

If you are lucky enough to have a spouse that is standing by you while you go through hell of cancer treatments I can assure you that they still see you as you were on your wedding day.  Love and sexual appeal is not 100% visual.  It is spiritual, emotional and a little laughter can go a Long way!  I am often asked why I didn't have a nipple reconstructed or tattooed on my reconstructed breast.  I always answer that I wanted to have more fun surprising my husband with a sticker on it instead.  From yellow happy face emoji stickers to scratch-n-sniff stickers we have had some fun with it.  I love it, and I am so glad I made the choice I did.

My advice to you is to get your sexy back.  Good song by Justin Timberlake, and good advice.  It doesn't matter if you are married or not, you deserve to feel desirable and sexy.  Buy a gorgeous pair of lacy panties, or a sexy pair of high heels, a bold lipstick or hey some scratch-n-sniff stickers and have fun with it.

What do you do when a friend is diagnosed?

Not knowing what to say when you hear that a friend or family member has been diagnosed with cancer is a common feeling, even to the most gifted of speakers.  A cancer diagnosis is devastating, there is no getting around it, and for a survivor to have it return and hear those words for a 2nd or 3rd time, "you have cancer" for me it was more devastating than the first time.

Recently I have seen posts on Facebook of my fellow breast cancer sisters posting that their cancer has now metastasized labeling them stage IV or incurable because now the original space infected by cancer has now moved.  Although there is a lot of research into breast cancer there is not a lot (or enough) research into metastatic cancer.

A cancer patient and their family live daily with the fear of cancer returning.  When it does it is heart breaking.  As a survivor myself I feel like I don't know what to say to my friend who now has to go through chemo all over again, lose her hair all over again, feel like crap all over again.  All in the fight to live to see her grandkids born. 

What do you say to a friend or family member who is diagnosed with cancer???? Whether it is the 1st, 2nd or 12th time they are diagnosed you can always say, "I love you, and I am here for you, whatever you need.  Even just to hold your hand or sit with you."

#stageIVneedsmore  #cancersucks #cancercutie #Iamthefaceofstage4

BHT and why you should avoid it

In researching information on cancer prevention for my own fight against breast cancer I tend to come across latest fads and info about the newest links to cancers, theories, and products that are carcinogens.  Here in the U.S. it is astounding how many products and foods that are allowed in our country for consumption to the American people. 
I used to feel safer buying American products because I naively thought our FDA watched over the safety of the products and foods and that we held things to a higher standard than other countries. 
What a joke. 
I am not a big conspiracy theorist, or anti-American however I do believe that the powers that be and big companies are too blinded by greed of the almighty dollar that they lie to the American public and allow harmful products to be consumed in a snowball effect that ends up lining the pockets of big pharma.  
BHT and BHA are one such item. BHT or butyl hydroxytoluene and butylated hydroxyanisole (BHA) is a fat soluble synthetic compound which is commonly used to preserve foods and cosmetics to slow down the autoxidation rate of ingredients in a product that can cause changes in the taste or color.
When looking at the MSDS (Material Safety Data Sheet) for BHT they found the following:

• Do NOT let this chemical enter the environment.
• Combustible.
• Ingestion causes Abdominal pain. Confusion. Dizziness. Nausea. Vomiting.
• The substance may have effects on the liver.
• The substance is harmful to aquatic organisms.

That is certainly concerning when we have it in our food and in our cosmetics!
The FDA have approved BHT for use in food, so it comes down to us to check ingredients.  And not surprising BHT is found in both kids favorite bright colored and fruity cereals to what are seemingly healthy adult cereals that look like a healthy alternative even saying, non-GMO, organic, healthy...... until you read the ingredients and find BHT as the preservative.
My kids hate going grocery shopping with me because when they want to pick out a new cereal we HAVE to read the box and look for BHT.  They know those 3 little letters mean a hard NO.  It's very disappointing!  For me too!  I have had to stop using one of my favorite shower gel and lotion combos from a leading bath and body store because their signature line contains BHT as a preservative.  This broke my heart!  I have to be extremely careful and read the teeny tiny list of ingredients for the items that don't have BHT.  It sucks.
But think about it.  Our skin is our biggest organ right?  Well if you are rubbing lotion into your skin every day or even a few times a week over the course of years, plus eating small to medium doses of BHT every day don't you think your chances of cancer would be elevated?  The correct answer is Yes.
For most of us cancer patients and survivors we are told our cancer is environmental, meaning the doctor's don't have one trigger point for it and as Americans there is so much fake, chemical crap in EVERYTHING that it is only a matter of time before our DNA is broken down and cancer can either be triggered or grow.

My advice.... don't be a blind shopper or consumer.  READ your products, make educated healthier choices.  You only have one life to live so make the most of it!

Side Effects Suck!

OMG can I just say how tired I am of dealing with side effects issues from cancer meds?!  This s*it sucks!  I have been dealing with cancer for almost 7 years now, and while I am grateful to be alive it's not really a good life.  Part of me feels like I have no right to complain, yet the other half says, "hell yes you do!"

As a metastatic breast cancer patient I am treated as a patient with a chronic disease that needs to be monitored and treated in times of "flare-ups" or growth or change.  This means that in order to keep my disease in a "stable" or even remission state I have to be on meds, meds that block estrogen and meds that block or attack the cancer.  These meds are a pain in the ass, and because I am so lucky not only to deal with this, I have the added bonus of not being able to tolerate most of the common medicines used by doctors for my disease.  Ibrance kicks my butt with severe bone aching fatigue along with seriously depleting my immune system and entire blood counts putting me at extremely high risk of anything contagious.  It does work in killing my cancer and allowing me a chance at being back in remission for my disease but the risk is to much to my body that the doctors try other meds.  Yay.  I hate playing around with medicines like a test subject of a mad scientist.

The doctors tried various doses of Ibrance over the past year in hopes that my body would tolerate it better but it turns out that the lower dose isn't strong enough to kill the cancer and if you know anything about cancer then you know if you give it an inch it will try to take a mile.  So after a year of playing around with Ibrance my oncologist decides Afinator is our next option as it is in a different class of oral chemo med as it attacks the cancer differently than the class that Ibrance is in.  Ok swell. 

My whole experience with Afinator has been a nightmare from the beginning.  A very common side effect is mouth sores and hideous headaches.  I'm talking severe blistering and canker sores so bad you can't smile or talk let alone eat.  Within the first 3 days I had horrible migraine like headaches that I couldn't go to work and my mouth erupted in sores.  The doctor knows this and puts in a prescription for something called "miracle mouth wash" this is $55 for 8oz that is not covered by insurance and only special compounding pharmacies can make for you.  It took over a week for me to finally get my little 8oz bottle and by that time I was miserable with mouth sores that it did little to nothing to help.  So the doctor lowered the dose, said to take a week off the meds and try again with the lower dose.  Yay we are playing around with meds again.  So.  Much.  Fun.  On the lower dose after a week I developed blistering sores all over my scalp as well as my mouth and this time one blister on the inside of my lip started bleeding.  The nurse says I needed to be taking this med inside of a gel capsule.  That the drug company won't make it this way, but that it is very well known in the breast cancer community that this medicine needs to be taken this way to help prevent the sores and that I can buy them anywhere, CVS, Target, Walmart, Walgreens, etc. anywhere with a pharmacy.  Ya no such luck.  I went to CVS, Riteaid, Costco pharmacy and nope they didn't sell them and didn't know who would.  So I figured maybe a vitamin supplement company like GNC would sell them.  Nope.  Ok internet it is, if you can't buy it on the internet then it doesn't exist right?  Thank goodness for Amazon.  (I love Amazon)  I have no idea what size of empty gel capsule to buy and they only have them in bulk so I buy the first one I find $7.99 and 1000ct. to be delivered in 2 days.  I am resigned to trying this although I really don't see how this will help my scalp, but if it helps the mouth sores it's worth trying.  The doctor has me on a 2-3 week break from these fun meds to completely heal.  We were hoping the newest blood test would show good results, and they were supposed to wait until after my 42nd birthday to share said results.  Nope 4 days before my birthday I get a call that there is cancer DNA circulating in my blood, and I need to get back on meds ASAP the day after my birthday, just as I was finally completely healed from all the sores.  Doctor suggests that we lower the dose again to the smallest amount and take them inside the gel capsules and let's wait and see what happens.  Fingers crossed that it works, and we can start moving back up the dose ladder so I can get back to a stable status.
It's now been 11 days and my mouth is pretty normal, sensitive to heat and spice but no blistering sores, however sores appeared all over my scalp again 2 days ago and are now starting to show up on my face and I've had a constant horrible headache for a week.  I don't like taking over the counter pain meds on a regular basis because of the damage to my liver and kidney counts and I only take my Dilaudid if I absolutely have to.  So I am feeling really peachy right about now.
No were in my internet research about Afinator does the scalp blistering appear, however I do find fellow patients complaining or reporting it on blogs and such and have tried steroidal treatments that help and some natural home remedies that work for the mouth sores that don't cost over $50. 
Why doesn't my doctor know about this?  Why do I have to do the research if she sees patients like me on these meds every week?  I am obviously not the only one, so why do I feel that way?

Because you have to be your own advocate.  This is a common statement in the medical community.  Sad but true.  Doctors are called practicing physicians for a reason.... they are still practicing to get it right!  Not to mention they are human and they see a lot of patients, especially with breast cancer rates rising.  

I get caught up in placing my trust in my oncologist and putting my life in their hands.  I need to remember to retain some of my own control over my health and treatments.  It's my body and my life.  I am a mother, wife, sister, daughter, friend and people depend on me.  No one will protect me or look out for my best interests like myself and I need to remember not to give total control of my health over to my "practicing physician" and look into options to minimize my negative side effects so we can kill this cancer.

I hope this blog helps those of you fighting cancer with me not feel alone, you have a friend in me.