We May Be Numbers, But We’re Also So Much More

Hello Mermaids! It’s been a while since I’ve written a post, but it’s been a busy time for me. I have been doing interviews with different media outlets about my blog and living with metastatic breast cancer. You can read some of these interviews in the section of my blog,  ‘Featured In’. There will be more posted by the end of this month!

One of the main reasons I chose to blog about Metastatic Breast Cancer was to educate and give hope to others with MBC. Therefore, I also believe it is my responsibility to educate myself on the latest in the field of metastic breast cancer. Dana Farber Cancer Institute, where I am treated, hosts an annual Metastatic Breast Cancer in conjunction with EMBRACE.

EMBRACE (ending metastatic breast cancer for everyone), is a clinical program launched in August 2016. Doctors and researches collaborate to better understand MBC, “with the hope of improving treatment options now and in the future.” Over the years, I have donated blood work and tissue samples from previous biopsies; all with the hope of improving treatments. 

This year I was asked to speak on the patient panel of the forum with three other women with MBC. In this post I would like to share with you some of what Mark, Michaela, and I absorbed during the day. 

Dr. Eric  Winer, (Director, Breast Oncology Center, Susan F. Smith Center for Women’s Cancers), began the day with opening remarks. He spoke to both the hope and the reality myself and others with MBC face. The hope: There has been more progress in the last five years in the field of MBC than the previous 20 years; doctors and researchers are moving closer to the day where  stage IV breast cancer is treated like a chronic illness, like diabetes or high blood pressure. The reality: We aren’t there yet and we might not reach the ultimate goal in our lifetimes. The quality of life we have on treatments and the efficacy of treatments still have a long way to go.

Dr. Winer also talked about how those of us with MBC have a unique emotional side to the illness. We have family and friends who want to talk about our disease and others who don’t. We all want to live our lives as much as we lived them before our disease. We are numbers and statistics, but we are also so much more. We talked a lot about what it’s like living with MBC on the patient panel. I talked about how metastatic breast cancer does not define my life; I talked about how I cope with living with MBC; I talked about how I don’t worry about things I can’t change or control. The other women and myself echoed one another’s thoughts; the common theme: we do not let MBC define us. It was so great to speak to so many inspiring women!

Dr. Erica Mayer, my oncologist, spoke about new research and treatments in Estrogen Receptor Positive MBC. (I am ER+, there is also HER2+ MBC, and Triple Negative MBC). It was uplifting to see how far we have gone in the “toolkit” of treatments. It was disheartening to see how many treatments in the toolkit I’ve had already gone through; I mentally checked off quite a few on the list. At the same time it was uplifting to see how far research has come. Many of the treatments that gave me extra months have only been approved in the last three years. It’s because of the women with MBC who came before me and others with MBC that we have reached the point we are at in treatments for MBC.

Now, it’s time to take another peek into the toolkit for another new treatment. I met with Dr. Mayer two weeks ago to discuss recent scan results. My bones and lungs look great, but my brain has a new spot, and lesions on my liver continue to grow.  Because of these results I need to stop the chemotherapy I have been on for the last eight months. Eight months was a very long stretch on any treatment for me and I’m glad it worked for as long as it did! The treatment I recently started is a hormone therapy, rather than a chemo, and consists of two pills daily. My toolkit of treatments is running low and I hope this new treatment will work in stopping progression. Soon, I will need to look into clinical trials once my options of hormone therapy and chemotherapy run out. (For MBC, the hope is for hormone therapy to work, chemo is an option for when hormone therapy doesn’t work or more aggressive measurures need to be taken, and clinical trials come into play when those other treatments types run out.)

Lastly, here is a link to an interview I recently did with Reader’s Digest about living with Metastatic Breast Cancer. This is very special to me because I got to be a mermaid and worked with such wonderful people in putting this article together.

LINK: https://www.rd.com/health/conditions/breast-cancer-mermaid/

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Pink, Pink, You Stink

Since October is Breast Cancer Awareness month. I thought it would be appropriate to re-share this blog post.
What comes to mind when you see a pink ribbon? No, not the kind you wear in your hair. The kind you see as a pin, on an article of clothing, or as a decal on your automobile (no longer guilty). You think breast cancer, don’t you!?

The pink ribbon has become a powerful symbol to increase awareness of breast cancer. I believe that there is value to awareness. In this case, increasing awareness of breast cancer has led to more women getting mammograms and performing self-breast exams. This is wonderful, early detection of tumors is a very good thing! Unfortunately, the story doesn’t end there; there is a dark side.
When I received my first breast cancer diagnosis, I embraced pink, I embraced the pink ribbon, I embraced the mentality I was going to fight like a girl, I embraced various cancer walks, and I embraced items that had a pink ribbon. However…
One should think before purchasing pink ribbon products or donating to a cancer walk. Many companies that sell products with a pink ribbon donate a certain percentage of each sale to breast cancer programs and many fail to indicate which organizations will receive this money. As for cancer walks, please find out to what and where your donations are going.
Here’s the thing, the story of breast cancer should not be viewed through “pink”-colored glasses.
What gets me most angry about all this pink crap is…. well, quite a bit.
Pink is such a tame, innocent, cute color. We associate pink with sweet, happy thoughts. Our brains are so clouded with pink that we fail to think, how can anyone die from a disease that is associated with such a cheery color?
Well, guess what? Many women and men will die from this disease. Yes, die. Die from this pink, commercialized disease.
Some facts on breast cancer:
40,000 women with breast cancer die every year.
Breast cancer is curable when it is contained to the breast.
6-10% of new cases of breast cancer start off as stage IV or metastatic.
30% of all breast cancers will become metastatic. (I contributed to this 30%.)
The median survival rate for metastatic breast cancer is three years.
(Source: MBCN)
So, when I hear that the median survival rate for metastatic breast cancer is three years, I want to raise funds to FIND A CURE.
Of all the funds raised for all types of cancer, only 5% of those funds are directed towards metastatic research (the research focused on finding a cure); most funds generated by pink ribbon products and walks only go to advertising and awareness.
Here’s the reality of it: We are well aware of cancer folks. We need research for metastatic cancers. We need to find a cure.
Pink, and the pink ribbon do not tell the dark side of breast cancer. Breast cancer, especially metastatic breast cancer is cruel. The surgeries, chemotherapy, radiation, bone scans, CT scans and MRI’s are frightening. The medication side effects are unpleasant. The effect it has on our families and friends is devastating.
We wonder how much “time” we have to spend with those we love.

Parting Is such Sweet Sorrow

Well, it’s that time of year, the days are getting shorter and kids are back in school. I know many moms celebrate this time of year, but not me. I always missed the days of just hanging with my kids when school started up. I no longer have children in my town’s school system, but my youngest, Max began his freshman year of college. I miss him. 

I knew I would miss him, but it became very apparent yesterday. My dog, Wally had an appointment with the groomer yesterday. I always dropped Wally off at one o’clock while Max was in school, but Max always came with me to pick him up after school. This time it was just Wally and me. Something was missing….it was Max. 

I miss our late night watching of The Twightlight Zone, and of recent, eating waffles while everyone else would be asleep. I miss his sense of humor, and his caring nature. I miss his tech skills since I do not have any, and most importantly, I miss him taking out the dog to do his business. 

Max was eleven when I was first diagnosed with breast cancer. Even at this young age he was empathetic. This empathy continued through my second diagnosis. Max would come home from school and the first things he would ask me as I lay on the couch were, how are you feeling? Have you eaten today? 

Being a fourteen year old and knowing your mom has a terminal illness is rough. I am so happy with how Max has handled this situation. I think the key to this was honesty.  There were no secrets and everything about my illness was shared. I believe it gave him a better understanding of what to expect, and how we as a family would deal with the unexpected. 

Although one of my caregivers has flown the coop, I am delighted, thrilled and so very happy for him to begin this new chapter of his life. 

I wish Max, and all the college freshmen a great year. Make new friends, study hard, and most importantly, enjoy and have the time of your lives. 

Sugarcoating

Sugarcoating

1. the act or process of covering something with sugar.

2. a coating or layer of sugar or a sugary substance.

3. a thing used to make something else considered unpleasant or disagreeable seem attractive or palatable.

I’m going to be discussing definition number 3, although coating or covering something with sugar reminds me of cider donuts and sugar cookies which makes me happy and hungry.

I am a firm believer in telling the truth, the hard truth. I always have. When I was teaching and conducting parent/teacher conferences, I told it like it was. If little Penelope was getting up and walking around the classroom kicking things during circle time, Penelope’s mom and dad would certainly be advised of this disruptive behavior. No sugarcoating about Penelope’s  behavior!

Over the last few days I’ve been thinking about how breast cancer is discussed and portrayed. There is a lot of taboo over discussion of metastatic breast cancer; often times it seems people don’t want to talk about death and dying. There even seems to be cautious or tentative discussion when talking about breast cancer generally. I’ve also noticed discussion of cancer can be clouded by hope; I always talk about finding the silver lining, but I never want that silver lining to sugarcoat reality.

One of the main reasons I started this blog was to spread awareness and educate others on metastatic breast cancer. I’ll admit, even as a patient with Stage IIIC breast cancer I didn’t really understand metastatic breast cancer. Now I do. The medical field has a long way to go in developing treatments. 113 women and men die a day from metastatic breast cancer and one day I’ll be one of them.

Here are a few takeaways:

  • Cancer should not be a taboo topic.
  • Metastatic breast cancer is progressive and terminal.
  • There are many new treatments available and being developed. This allows metsters like myself to receive treatments at our disposal for the rest of our lives…until those treatments stop working and there is no more.

So let’s not sugarcoat breast cancer. The reality is that too many women and men are dying everyday from  metastatic breast cancer. 

Feeling Excited

EXTREMELY EXCITING NEWS!!!!!!
As many of you know, my family and I were filmed in March of this year by Rock’in Robin Productions (Robin Roberts) for the WebMD’s series Advanced Breast Cancer: Courage, Comfort, and Care with Robin Roberts. TOMORROW is the big day!

 The series is launching tomorrow 8/15 with a preview on GMA (Good Morning America) in the 8am hour, and the entire series will going live on WebMD.com. 
Entire series will be live tomorrow here:

To view the video series, visit http://www.webmd.com/treatbreastcancer
So exciting!

I hope you will watch.

Living My Life

What does living life mean to you? To me, it’s living everyday no matter what comes my way. It may be good, it may be bad, it may be sad, or it may be happy. I want to experience everything I can. I will not let obstacles, whatever they may be, interfere and stop me from living. These days, as the tshirts say, “life is good”. I have lots of energy and I am feeling very well.

Summer is going nicely and my family and I are busy living our lives. We recently enjoyed a relaxing cruise to Bermuda. Bermuda is gorgeous and has pink sand beaches with beautiful turquoise water. The water is much warmer than the waters around here. In fact, Mark who never goes in the water had a fun time splashing in the waves. The whole family enjoyed a boat tour around the island on a glass bottom boat. We met many lovely families and have become friends with some of them. The cruise was a nice opportunity for all of us to spend time together before Max heads off to college. 

Speaking of college, since we came back from our trip, we have been doing quite a bit of dorm shopping. It’s nice that Michaela has been coming with us to help guide Max as to what he might need and want. It’s nice not being a newbie this time around. 

 I will be sad when Max leaves, but I know he is ready to go and spread his wings. He, like his sister, will go on to do great things. 

As I mentioned previously, I have lots of energy and am feeling very well. I am doing a lot of cooking and baking, and taking Wally for daily walks. I recently had scans done like I usually do after coming back from a vacation. Overall, they looked very good! My brain MRI showed improvement. Either the radiation effects are still working, or the chemotherapy I am currently on is helping. My bones and lungs appear the same (no worsening). Lesions on my liver have become smaller, but there is concern for a couple that appear larger. For now, I will continue receiving the chemo I am currently on and will recieve a CT scan in six weeks to check on the enlarged lesions.

At present I am not concerned. I feel well, my tumor markers are down, my liver enzymes are down, and all other blood work looks good. All great things. Feeling this well makes me forget how awful I felt last spring into early summer….well, not really.

Even during those terrible, awful, horrific times when it was difficult walking up the stairs, tiring taking a shower, having no appetite, vomiting and living on the couch or my bed, I continued living my life. Of course it wasn’t the life I wanted or planned on, but I was still a warm body who enjoyed spending time with her family and friends even though I was glued to the couch during visits. In my book, everyday above ground is a good day, no matter what. 

Life is what you make of it. Some people will be miserable and complain about the obstacles and challenges in their life. Not me. I choose to accept what is, let go of what was, and have faith in what will be. Of course things are much easier to do when you are feeling well, so if you try to contact me, and I don’t respond to you right away, I’m busy……..I’m living my life!

Real Fake News

Cancer cures, or what some think are cancer cures, are displayed all over the internet. Many people post these so called cures on social media, especially Facebook. This makes me angry.  These “cures” are bogus. They give cancer patients, who are vulnerable because they are sick and looking for answers, false hope. 

In doing research on the subject of bogus cures, I found the Food and Drug Administration is calling out more than a dozen supplement and herbal product makers for misleading their customers with fake cancer cures. They have received warning letters, which is standard procedure.

These fake cancer cures come in the forms of creams, pills and teas. These creams, pills and teas promise to cure bladder, breast, stomach, skin, lung and many other types of cancer. Slick ads, videos and other marketing techniques -including testimonials about miraculous outcomes- are what these companies, who produce these bogus cures, use to lure cancer patients in.

On Facebook I have learned that everyday herbs and spices, dandelions, and cannabis can all cure cancer. People post these “cures” all the time. Now, think about this…..If all these products worked, there would be no cancer. Believe me, I wish they did work. I would much rather sip dandelion tea than get toxic chemotherapy running through my veins. 

On one of my visits with my oncologist, Dr M, I brought up turmeric. Turmeric is a perennial plant which is part of the ginger family. I read an article that turmeric can cure breast cancer. Dr. M was more than happy to discuss this topic with me. I knew the answer. NO! In fact, turmeric at high doses can cause side effects such as stomach upset, nausea and dizziness. There can also be interactions between turmeric and current medications you are taking, which can be quite dangerous.

Dr. M told me she would be happy to discuss any “cures” with me that I read about. Truthfully, there have not been any since I read about the turmeric. I know better. 

For me, I need to receive chemotherapy. Many people tell me it’s poison, or that the chemo is worse than the cancer itself. Well, if I didn’t get chemotherapy, I would not be here. I will do what I need to, as long as I feel well, to prolong my life. 

We are all looking for answers to our ills. Unfortunately, we don’t always get the answers we would like. Speak with an oncologist if you have any concerns regarding a cancer cure. Remember, if it sounds too good to be true, it probably is. Real fake news is everywhere.