September 23, 2013…. A Terrible, Rotten Day

One year ago my life- and the lives of those close to me- was shaken up. I’m going to bring you back to the summer of 2013. It was a busy, but exciting time. Life was great, really great.

In July, Mark, Michaela, Max, and I took a family vacation to one of our favorite places: Walt Disney World. We have been visiting WDW every couple of years since Michaela was 2; it really is “The Happiest Place on Earth.” In line with tradition, both of my children thought it would be a great idea to visit our happy place before they started school; my daughter would be starting her freshman year at The George Washington University in Washington, D.C., and my son would be starting his freshman year in high school. In addition, I thought it would be a wonderful place to celebrate my 3-year cancer free anniversary. Exciting times!

During our Disney vacation, I noticed every morning I was a bit nauseous. I had a bitter taste in my mouth, and I tired easy. Now, if you have been to WDW, being tired is not an option. There is so much to see and do, and you really rack up the walking miles! Around this time, I noticed a bump on my head, and I was bruising easy. I was questioning whether the bump had always been there. I just didn’t feel myself.

August came, and we took a road trip to get Michaela settled in at GW. It was sad leaving her. I cried. She settled in nicely, and her college years were off to a good start. Shortly after, Max started high school, and adjusted well. Both kids were happy, healthy, and enjoying their new schools and friends. Mark and I were thrilled. Life was great!

We know our bodies better than anyone else. I kept questioning that bump on my head. Was it always there? Is it new? If it’s new, what does it mean? While at my hair appointment, I asked my stylist if the bump was there the last time I had my hair done. I mean, who better to ask? She knows my hair, and I would think knows the shape of my skull from giving me shampoos with a fantastic massage. She told me no, the bump was not there.

Okay, it was time to visit the doctor to see what was going on. I made an appointment the following day.

I had a nice visit with my nurse practitioner; I adore her. I went to her when I found the lump under my right armpit in 2010. She was my lifesaver! This time around, I showed her my bruises and bump on the head, and we discussed the other symptoms I was experiencing. She ordered an X-ray of my skull, blood work, and put me on a proton pump inhibitor to decrease the amount of acid in my stomach.

I received a call later in the day. My nurse practitioner was on the phone. I thought this was a bit odd because usually, her nurse would call with test results. She told me the X-ray did not show much, but she was a bit concerned with my low red blood counts. She asked me to make an appointment with my oncologist. I told her I had one in two weeks. She said I couldn’t wait. I took a deep breath… I knew. She was my lifesaver once again.

Mark and I met with my oncologist. He told us the low red blood counts could be due to a virus. Mark was somewhat relieved, and thought for sure it was a virus that was making me feel the way I was. I was hoping, but I knew better.

A PET scan was scheduled for September 23rd, and I would meet with my oncologist a few hours later to discuss results. PET stands for positron emission tomography. It is an imaging test that uses a radioactive tracer to look for disease in the body.

When it was time to meet with my oncologist, my oncology nurse asked if she could sit in with us. Hmmmm…….
The doctor came in, shook our hands, and sat at the desk. He asked if I was having any pain. He then brought up an image on the computer screen.

It was the image of my body, all lit up.
He looked sad.
He said the cancer has spread.
He was so sorry.
My oncology nurse cried.
I cried.
Mark looked lost.

When I was diagnosed with breast cancer in 2010, I never questioned the diagnosis. I never said why me. I would deal with it, and move forward. Not this time.

I went through a range of emotions as we all sat looking at the computer screen. I was angry, and I was mad. How could this happen to me when I took all the right precautions? I was reassured I did all I could to prevent a recurrence. It didn’t matter. My cancer metastasized to my bones, liver and Dura. On top of that, after more testing, thyroid cancer was discovered.

What a way to end a great summer.

My oncologist told me there would be no cure like last time, but the cancer is treatable. Metastatic cancer is considered chronic, and is compared to Diabetes in regards to treatment.

Mark asked how much time I had.
We did not get an answer.
I was referred to another oncologist for my care.
Mark asked her the same question.
Still, no answer.

Life expectancy with metastatic cancer is 6 months to 3 years.

I had to call Michaela at school to give her the news. She handled it well as she could, as did Max.
Mark, not so much.

Within a couple of weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment, which I will have for the rest of my life.

Treatment began with the dreaded chemo. It was awful. My blood counts were all over the place, and I needed a couple of blood transfusions during the course of treatment. I was weak and tired, and it was hard to keep up with day-to-day activities.

My course of treatment now does not include chemo. Yay! I am on hormone therapy, and I take an intravenous drug for my bones. I have CT and bone scans every two months to monitor the cancer. This month’s scan showed slight progression in the bones. This means it will be time to switch hormone medications soon.

I am feeling fine and handling my situation well . . . most days. I have my moments, especially when I think of my husband and kids.

It makes me sad to think I might not grow old with Mark, or be around to see my children’s graduations and marriages, or become a grandmother and spoil my grandbabies like taking them to Walt Disney World- our happy place. You see, I am going to die from this disease. I do not know how much time I have with my family and friends. Really, who does? I know this might be hard for some of you to read, but I want you to know I am at peace. I never give up hope though, because I never know what tomorrow will bring.

I am always looking for the silver lining. Having a disease that you are going to die from lets you do some pretty important planning. I get to plan and visit places I have never been to and do things that I have always wanted to try. Some refer to this as a bucket list. Some never get to anything on this list because they die due to an unexpected death before they can get to it. I have time and I plan to use it wisely.

I get to write my own obituary and plan my funeral: I want a park-like atmosphere, standing room only, black clothing optional, and most importantly I want a celebration of my life.

I live, laugh, and love everyday. I accept what is, let go of what was, and have faith in what will be.

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17 thoughts on “September 23, 2013…. A Terrible, Rotten Day

  1. I just love you so much Susan. You are such an inspiration to everyone around you. You light up the room as soon as you walk in. I feel so lucky to have a woman like you in my life. You are amazing!

    Liked by 1 person

  2. Susan, you are the bravest, most insightful woman I know. You’re an incredible writer, and should collect your posts in book form. I can only believe that your positive attitude is helping your physical condition. Keep on keeping on 🙂

    Liked by 1 person

  3. Susan, As you know, I am not a person who easily lets others in. I keep to myself and hold alot in. I have been very lucky to have met you, and I never imagined that I would let you break my hard shell and we would become such good friends over the last 11 years! Reading your post brought me to tears. I have seen the highs and the lows that you have gone through with this horrible diagnosis. I am angry at cancer. Why does this have to happen? If I could change it, you know I would. But, as angry as I am, I have a really great friend who sees the positive in everything, and that friend is you. I am so proud of you for how you have handled all of the tests, doctors visits and diagnosis. I believe we are all on a journey, none of us really knowing where we are going or when it will end. One thing I do know, is that no matter what, we will always be best friends, and no one, not even cancer can take that away. I am very proud of you and love you, Mark, Max, Michaela and Wally with all my heart. Thank you for being such a great friend and an inspiration and for reminding all of us how to appreciate life and all that we have.

    Liked by 1 person

    • Now you have brought me to tears! It was fate that brought us together. Your friendship means so much to me. You are the one I can share all my secrets with me. You are the one I can count on for…..everything. I am not sure what I would of done these 11 years without you. I am so glad I was able to break that hard shell of yours. I love you with all my heart (Mark, Michaela, Max and Wally do too). Thank you for being my friend.

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  4. Hello Susan! It’s Ian. Cheryl’s adopted son from work. She has been telling me everything about what you post on here and about your life. You’re such an inspiration to this entire world. Keep going on and never give up. Thanks to you I have found my new tattoo! Your last verse on your blog just made me tear up and I will forever hold that close to my heart. Again thank you so much! Prayers your way.

    Liked by 1 person

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