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. 

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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.

Graduations + Good Scans = Happiness

grad·u·a·tionˌɡrajəˈwāSH(ə)n/

noun

1. The receiving or conferring of an academic degree or diploma.

2. The action of dividing into degrees or other proportionate divisions on a graduated scale.
I’ve been a little busy lately. Both my children recently graduated, Michaela from college and Max from high school. First up was Michaela. 

We ventured out to Washington DC for a fun and memorable weekend. It was a beautiful sight watching Michaela receive her diploma. You see, Mark and I were not sure I would be around for this day. 

While we were waiting for the graduates to walk out, Mark turned to me and said that he wished every day that I would live long enough to attend the kid’s graduations. Thankfully, wishes can come true. A week later it was time to celebrate Max’s graduation.

Like Michaela’s graduation, I was thrilled to be at Max’s. At one point I had watery eyes, looked at Mark and told him I was so happy to be here. I am hoping to be around for another four years. I need to witness Max graduate college and Michaela graduate from law school. I think I will be at both.

The graduations were a happy time for my family and I was feeling great. I wanted and wished this feeling to last forever. Did this wish come true?

I had my nine week scans this week. They consisted of a bone scan, a pelvic, abdomen, and chest CT scan, plus a brain MRI. I met with Dr. M yesterday to discuss results. Guess what? Another wish has come true.

Dr. M said my body scans looked great. All tumors are smaller in size. This is wonderful news.  There was an issue with my brain MRI. Whoever read the scan thought one of the tumors was worse and one was better. Dr. M got in touch with my radiation oncologist, Dr. K, at midnight to get her thoughts. How cool is this…..my doctors discussing my health so late at night. Reading the MRI report was scary, but Dr. K said I was stable and to just monitor. More wonderful news. Yay!

Last week I had an appointment with my endocrinologist due to the thyroid cancer. We do not do much in regards to this cancer because it is slow growing, but the thyroid is suppressed through medication. On this particular visit, Dr. B recommended I get an ultrasound, since it’s been a while and I am still here. I guess the thought was that I wouldn’t live this long. Ha! 

Today I had the ultrasound. More good news. It appears the cancerous nodule on my thyroid is smaller in size than it was 2013. I’m not sure how this happened and I’m not going to question it.

I love happy occasions and good news. The last couple of weeks have been filled with both. I hope they continue. 

A Rebirth

Flowers have popped up from the ground. Tree buds have opened up. People are sneezing. This must mean one thing……Spring has arrived. The season of rebirth.

Although Fall is my favorite season, I enjoy Spring. I love flowers and plants, and am now planning what I will be planting this year. Last year at this time I was very weak, and had a difficult time getting my yard in order. This year I am looking forward to my planning coming to fruition. 

Like Spring, I feel as though I am experiencing a rebirth. After receiving ten brain radiation treatments, I am no longer having double vision or blurriness. My face is not numb, and my jaw is feeling much better. I am absolutely thrilled with the results. Three days after radiation was complete, I began a new chemotherapy treatment. 

I was a bit nervous beginning the new chemo due to its side effects. Fever is one of these side effects. Why should I be nervous about something that almost killed me last summer?!? I have had two treatments so far, and I am happy to say the side effects have not been too bad. I am feeling more alive and positive about my health than I have in a long time. It’s a great feeling to have. 

My family and I have some happy occasions to celebrate this Spring. Michaela, who graduated early (December), summa cum laude, with a double major in Political Science and Communications from George Washington University, will have her graduation ceremonies soon. We are looking forward to attending.

Max will be graduating from high school, and committed to attending the University of Massachusetts Amherst’s College of Information and Computer Science. Mark and I are very proud of Michaela and Max.

Enjoy the warmer weather of Spring, and don’t forget to tiptoe through the tulips. 

Lights, Camera, Action….

Hello Mermaids! It’s been quite awhile since we were last together. So much has happened in this time. Let’s begin with the good news.

Towards the end of February I received an email from ROCK’N ROBIN PRODUCTIONS, which “is a full service broadcast and digital production company creating new and exciting programming for network, cable and online audiences.” It is headed by Robin Roberts who is best known as co-anchor on Good Morning America.

The email explained an upcoming Robin Roberts five-part series about advanced breast cancer featured on WebMD.com. My blog was found during a search for this series. I was interviewed by the company and chosen to be part of this series as a woman living with advanced breast cancer. I am truly honored. Filming was so fun and exciting! I don’t want to give anything away, but I will let you know all the details when I can including how and when you can view the series online.
Health-wise, things went downhill after filming.

I started having double vision. It just happened out of the blue one day. I thought it might not be anything of importance until it was there the following day. I put a call into Dr. M. My nurse practitioner called me back, and it was decided I would need a brain MRI. Oh great, the dreaded MRI. But, I knew I needed it… ATIVAN, are you there?

I received a call from my nurse practitioner a few days after the MRI. It wasn’t the worst possible news, but it wasn’t the best. It appears I have another cancer growth on the outside of my brain. That’s the good news. No, really, that’s good news. The bad news would be if the cancer was inside the brain. See, it’s always about perspective.

The following week after receiving this news, I had CT and bone scans. Two days later, I met with Dr. M to discuss CT and bone scan results and review the results of my MRI.
Things went way downhill.

The PARP inhibitor I have been on apparently was not inhibiting PARPs. The lesions on my liver grew, and there is a new nodule on my lung. Oy!

So, what do we do now? First, I need to have brain radiation therapy for 10 days. That’s right. The double vision became worse, and now I have blurry vision, right ear pain/hearing loss, numbness on the right side of my face/head, and jaw pain with my right lower jaw moving way over to the right side of my face. Second, we begin a new chemotherapy called Gemcitabine. I will receive this treatment on a cycle of two weeks with chemotherapy and one week of a break. My infusions won’t start for a few weeks though since radiation must come first.

I started my first brain radiation treatment yesterday. I had to wear a head mask, which makes it very uncomfortable. Brain radiation is quite scary when you learn the symptoms and side effects associated with it. The main symptoms of brain radiation are fatigue, rash, and swelling. Additionally, the symptoms you are already experiencing can get worse. The rare side effects include blindness and paralysis. The radiation oncologist, Dr. K, explained to me if we did not do radiation, the cancer would continue to grow and cause these side effects anyway. Well then, zap my brain! I remember when I was first diagnosed with breast cancer, going to radiation without a care what would happen, but I digress.


The sooner we finish up radiation, the sooner we can start chemotherapy. I’m looking forward to telling those cancer cells to take a hike. The weather is going to be much warmer soon, they won’t mind.