The Circle of Life

From the day we arrive on the planet
And, blinking, step into the sun

There’s more to see than can ever be seen

More to do than can ever be done

There’s far too much to take in here

More to find than can ever be found

But the sun rolling high

Through the sapphire sky

Keeps great and small on the endless round

It’s the circle of life

And it moves us all

Through despair and hope

Through faith and love

Till we find our place

On the path unwinding

In the circle

The circle of life

~ Elton John, Tim Rice

Many people  do not feel comfortable talking about death, but guess what, we’re all going to die. Yep, it’s true. We’re born, we live, and then we die.  It’s the circle of life.

Weeks ago I met with my Rabbi to start planning my funeral. Many friends thought this would be upsetting for me to do, but I found it to be rather comforting. I like to be prepared and I like to do things my way. 

I learned that preparing to die involves lots of planning. Part of the planning involves choosing a funeral parlor, a cemetery, a casket, a gravestone and the type of service you would like. Healthcare proxies and Wills need to be updated as well. Mark and I will do this together. I’m happy that I can help now so this burden doesn’t all fall on Mark.  I think planning for your death is something everyone should take advantage of while they can.

I’ve been working on my legacy for my family. Journals for my children are almost complete and I’ve been teaching Mark how to prepare some of his favorite food dishes. I really need to teach that man how to use our fancy oven. To convection, or not? 

When I met with my oncologist, Dr. M, two weeks ago, I told her I met with my rabbi and we started to plan my funeral. She told me I was doing well right now, but it was a good idea to plan. This led me to ask some questions. 

As I mentioned in a previous blog post, I’m on a new treatment. Dr. M is aware that I like to know what the future holds for me, and she’s comfortable answering my questions. I asked her what happens if this new treatment does not work. She explained there may be clinical trials that I could participate in or other chemotherapies to try, but there will come a time when treatments may become dangerous if I become too ill. 

During this past spring/summer I got a taste of being very ill. It was just awful in so many ways. I remember saying I was not ready to die, not the way you’re thinking, but because I was not prepared. I used to be superstitious, believing that if I was prepared it would speed up my death. I don’t feel that way anymore. 

There are so many things I would like to see and do, and I hope to have the time to do them. When the time comes to leave this planet, I’ll take comfort knowing I was ready, and that I prepared my family to move on. 

Are you there god? It’s me, Susan

Happy and healthy New Year, Mermaids! I wish you all wonderful things for 2017.

I would like to say good riddance to 2016. It wasn’t the best year for me, but it ended in a wonderful way. Michaela graduated a semester early from The George Washington University with a double major in Political Science and Communication. She graduated with highest honors, Summa Cum Laude, and honors in both her majors. We are beyond proud. Max, who is a senior in high school, is waiting patiently to find out where he will attend college in the fall. We cannot wait to find out!!

Between all the studying, college applications, jobs, and my health, it’s been a bit stressful for my family. What to do?
I decided it was time to go to my happy place. That place is Walt Disney World. We have been many times before, and this trip brought back many happy memories, especially for Mark and I. We had a great time, and it was the perfect way to end the year. Now, back to reality. 

Last week I had my bone and CT scans. I wasn’t really sure what to expect, but I had an idea something was not right. I lost quite a bit a weight again in a short period of time, and I just wanted to sleep. Hmmmm…..

I met with Dr. M two days after the scans. Unfortunately, the tumors on my liver are growing and multiplying….ugh! Dr. M made mentioned how I always know what is going on with my body. Sometimes I wish I was wrong.

I was taken off the Eribulin (chemo), and began a new type of treatment called a PARP Inhibitor. I take 8 pills in the morning, and 8 pills in the evening. If you would like to learn more about PARP inhibitors, please go to my Facebook page. I have a little video posted from Dana-Farber which explains the treatment: Facebook.com/letusbemermaids

I am of course disappointed with these latest scan results. I start questioning why my treatments do not last very long. After discussing this with Dr. M, I turned to my spiritual side.

I am not a religious person, but I do believe in God, and have nightly conversations. These conversations happen when I am in bed, and they involve thanking and begging. I speak not only of myself, but family and friends, too. Some may refer to these conversations as prayers. 

I also have conversations with my mom and dad, who I miss dearly. I believe they can hear me, as does God. I also believe that no matter how often I ask them to make me healthy, it may not happen. It might not be in the cards, and I am at peace with this. 

For now, I will take this new drug, and hope it helps with minimal side effects. I will continue with my nightly conversations and, as always, keep on living. I have many happy events in this new year.

Dream On

dream

drēm/

noun

1.

a series of thoughts, images, and sensations occurring in a person’s mind during sleep.

verb

1.

experience dreams during sleep.
night·mare

ˈnītˌmer/

noun

a frightening or unpleasant dream.

 

I love to sleep and I’m thankful for this because I sleep a lot. I’m a night owl and usually drift off to sleep around 2:00am. I’m most definitely not a morning person and the morning is when I enjoy sleeping the most. Friends know not to call me before 11:00am. I will not answer.

I dream quite a bit during my sleep and often remember those dreams. Some dreams make me happy like when I dream of my parents or vacationing somewhere tropical with Mark. I wake with a big smile on my face. Some dreams make me sad like having advanced breast cancer. Oh, wait…..that’s not a dream, that’s my life.

I’ve been dealing with breast cancer since August 2010. It was 2013 when the cancer cells in my body decided to wake, probably from a nice dream, and have one hell of a party. Since then, I feel like my life is one big dream, or more like a nightmare. Wake me up, please!

It was a nightmare when I was too weak and tired to take a shower, or walk up the stairs, or eat, or had to sleep 17 hours a day, felt nauseous, could not drive, was hospitalized, recieved many blood transfusions, missed my children’s important events, and more. These were agonizing times and I wanted someone to wake me up from my nightmare. I wanted my life to be the way it was before August 2010.

In a sense I did wake up. This is the life I was given and I could be miserable or I could continue to live. I chose to live. 

I will say that I don’t think about what my life would be had I never gotten cancer. I’m a firm believer that things happen for a reason….good or bad. Yes, I believe I was meant to get breast cancer. I am using my experiences living with metastatic breast cancer to educate about this disease. 

These days I am feeling well, well enough to go on vacation to my happy place, Walt Disney World, along with Mark, Michaela and Max. How can you not be happy at WDW?  

Wishing you HOLIDAY HAPPINESS. 

BOO!

Halloween, Halloween 

Oh what funny things are seen
Witches hats, cold black cats

Broomstick riders, mice and rats!
When I was teaching, I always enjoyed singing, and sharing this song to my young students during the month of October. They would giggle as they acted it out, and would scream in delight the word RATS.

I have always had a fondness for Halloween, and I am happy my family shares this fondness. We enjoy dressing up, and decorating our yard. We also hand out full size candy bars! We are pretty tame when the little children come trick or treating, but once they are done for the night, beware of things that go bump in the night. Mark and Max get a kick in scaring the older kids. It’s quite funny. 

I can only remember one Halloween that I wasn’t thrilled with. It was 2010 and I had a round of chemo a few days before, and a terrible cold. Michaela was recouping from pneumonia, and Mark took Max trick or treating. We didn’t decorate much that year, and Michaela and I dreaded everytime the doorbell rang. We took turns answering it. We were miserable.

Scary movies, scary costumes, and scary jack o lanterns are all part of Halloween. For those with metastatic breast cancer, scans are quite scary for the duration of their lives. I usually don’t let the scans bother me much. They are what they are, and I can’t change the results.

I will be getting scanned soon. This time I am feeling a bit uneasy. The reason for feeling this way is because my treatment options are running out. I am hoping that this current chemotherapy I am taking will last for quite a while. If the scans do not look good, I will need a new treatment. I keep reminding myself I can’t change the scan results, and my super smart oncologist will know what to do next.

Now, back to something fun, Halloween. I hope your jack o lanterns glow bright, bats fly by the moonlight, witches cause a scary fright, and many trick or treaters roam the cold dark night. Wishing you all a spooktacular Halloween. 👻💀🎃

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.

Numbness, tingling and pain…Oh My!

It’s been a few months since I’ve been on Eribulin and I’m feeling great! I’m driving again and walking longer distances. My appetite is back in full swing, except after receiving chemo. My white and red blood counts remain steady and my tumor markers keep going down. All is great, except for one side effect, chemo induced peripheral neuropathy. 

Peripheral neuropathy is nerve damage and can be caused by many factors. A few include diabetes, autoimmune diseases, vitamin B deficiencies, and of course chemotherapy. 

Symptoms and side effects of peripheral neuropathy include, numbness, tingling, shooting pain, throbbing, and balance issues. I’m experiencing many of these symptoms. I started with slight numbness in my finger tips. I’m on medication for it and recently had my dosage changed, but the neuropathy has become worse. I now have it in my feet and lower legs. 

To help with these side effects, a reduced dosage of chemo is usually the way to go, or stopping the chemo for a while. Since I’m doing so well on the Eribulin, I’m hoping that I won’t have to do either.

I’m so happy these days that my primary concern is the neuropathy. Neuropathy can become very serious and effect your heart and organs if not taken care of. My medical team is on top of it and I let them know of any changes.

Enough about that! 

I think most of us with children have sent them back to school by now. My daughter, Michaela, has gone back to The George Washington University, where she is a senior, and my son, Max, has started his senior of high school. I wish all your children a successful school year. 

You might have noticed the mornings and evenings are becoming cooler and the days are getting shorter. I know many want to hold on to the hot summer weather, but not me. I’m looking forward to the cool, crisp days of fall….my favorite season.

Take care, Mermaids. Always believe that something wonderful is about to happen.

Always Have Hope

A few months ago, I thought it was the beginning of the end; I thought I was dying. My cancer had been spreading like wild fire through my weak and tired body for eight months. My oncologist told me my treatment options were becoming limited. How could I not think I was dying?

I never give up hope and I believe in miracles. My family and friends give me much love and support, which helps get through the rough times and celebrate the good times. I was so happy this week to share some good news, finally. I am not dying, at least for the time being.

Last Tuesday I received scans. Thursday, I met with Dr. M to discuss the scans and treatment. Dr. M came in the room with a big smile on her face. She said hello, shook Mark and my hands, and sat down. The first sentence out of her mouth was, “I am thilled with your scans.” All tumors, lesions, and lymph nodes have shrunk. My tumor markers have come down 90%…. WOW! Dr. M and I hugged with big smiles on our faces. Mark had a big smile on his face too.

I love receiving good news about my condition, but I always remain cautious. Some treatments last for a long time, some do not. I have experienced both sides of treatments. However, I am thrilled, and rejoicing at this wonderful news. 

Eribulin, my chemotherapy, will be given every other week instead of two weeks on and one week off. My white and blood red blood counts go way down after receiving Eribulin and take more than a week to come up in order to receive chemo. This is because my bone marrow is tired from receiving so much chemotherapy. I will also be taking neupogen injections to help keep the white counts from getting too low. 

As you might know, I try to look for the silver lining in everything. Right now the silver lining is weight loss! Between my thyroid, and cancer treatments starting in 2010, my weight fluctuated quite a bit. In March of this year, I lost my appetite. This continued until June before starting the Eribulin. I am happy to say my appetite has returned! I am content with my weight now. I needed a new wardrobe, and Michaela and I had a lot of fun shopping for new clothes… And we still are!

Thanks for reading my blog, and supporting me through the ups and the downs.
This photo was taken a couple of weeks ago by the talented Paul Vicario. He, and the talented Dee Lewis have captured the “real me” through their beautiful photos.