The difficult reality...

Although Shannon and I see each other pretty much on a daily basis and are continuously talking, we never run out of things to talk about. Some days it's small talk or kid talk. Other times, it's working through the nonsense of this still, very new, diagnosis of mine. We will let you know when we have it all figured out; it may be a while.

Meanwhile, we have had some conversations about the fact that some people are having trouble really understanding what this Metastatic Breast Cancer (MBC) diagnosis means. So I asked my Shannon to do a post to explain and I'm happy she agreed. She has a gift for getting all the information she possibly can, comprehending it and presenting it honestly and clearly. Shannon acts as my filter. She reads the information and gives it to me in chunks I can mentally handle. Meanwhile, she is a wealth of information.

Today, she shares some of that wealth.

From Shannon:

The sea of support surrounding Linda is vast.  I am a witness to the daily cards, gifts, and messages in all varieties of love and support.  Family, old friends, new friends, neighbors, and acquaintances everywhere are asking about Linda and offering their thoughts and prayers.  Often times through these conversations, I get the feeling that many people don’t quite understand what this recent diagnosis means.  Linda and I were thinking that it might be a good idea to put something out there to help inform folks.

Although Linda’s breast cancer diagnosis and battle 3 ½ years ago was difficult, challenging, and certainly gave her (and many of us) a new perspective on life, this new journey is very different from the last.

Most times breast cancer is diagnosed, treated, and it ends.  The possibility of reoccurrence is discussed, but it seems unlikely and usually is.  Mainstream media tends to focus on stories of survivors who have fought their breast cancer battle and won and it ends there, with cancer free anniversary celebrations to follow.  There seems to be little public focus on the darker side of the pink ribbon;  the women who will never stop fighting.

Early Stage Breast Cancer is staged I, II, or III.  These stages mean that the cancer is confined (as best the doctors and surgeons can tell) to the breast tissue and the lymph nodes.  Linda’s original diagnosis in 2011 was considered Stage II. She went through a mastectomy, chemotherapy and radiation to rid her body of the cancer.

Metastatic Breast Cancer is very different from early stage breast cancer because it means that the cancer has traveled beyond the breast to other organs and tissue.  Metastatic Cancer is also called Stage IV or Advanced Breast Cancer.  Breast Cancer most commonly spreads or “metastasizes” to the bone, lungs, liver and brain.  It is a systemic disease meaning that it affects the patient’s entire body system.

Like Linda, despite doing all the right things, receiving excellent treatment, and going above and beyond what was recommended, a small percentage of women who are first diagnosed with early stage breast cancer will develop metastatic cancer at some point.  A woman with early stage BC worst fear is metastatic disease.  A woman with metastatic BC worst fear is a spread to the brain.  Linda’s cancer cells have traveled to her bones, lungs, and brain.  This means Linda’s breast cancer cells have made their way to these organs.  Linda’s cancer has nearly the same cellular makeup as it did in 2011.  We know this through a recently performed biopsy of the disease in her lung and surrounding tissue.  Linda still has Breast Cancer, but it is now Metastatic Breast Cancer.  Unlike early stage breast cancer which is curable, Metastatic Breast Cancer currently has no cure.  This is harsh, devastating news and was quite a blow to hear the doctor explain on those first few dark days.

The good news is that there are numerous treatment options now and many more coming down the pipeline.  The goal of treatment for Metastatic Breast Cancer is to weaken the cancer, prevent it from spreading, and manage side effects and symptoms, while maintaining the best quality of life for as long as possible.  While Metastatic Breast Cancer (MBC) has no cure, there is a possibility that patients can get to a point of NED, which stands for No Evidence of Disease.  This, of course, is our hope for Linda while we wait for a cure. 

Linda has made significant progress in just 2 1/2 months since her diagnosis.  She underwent 10 days of Whole Brain Radiation Therapy in late June to shrink the disease in her brain.  We recently learned that the radiation is working and the invaders in her brain are shrinking at a fast pace!  Linda has also started chemotherapy and is doing a stellar job at tolerating the highest dose possible to fight off the yuck stuff.

"Miracles happen to those who believe in them." 

 -Bernard Berenson

In the meantime healing is exhausting work for Linda.  She looks great and at times can seem very much herself (at least to others).  However, her body is working overtime not only fighting the disease, but also tolerating the intense medicine necessary to shrink the yuck, and coping with ever changing side effects and symptoms.  Those are just some of the physical tolls.  

The emotional toll is real and something I dare not attempt to describe.  Managing this disease will now be a large, active part of the rest of Linda’s life.  However much she confides in me, I will never know exactly what she is going through.  Although it is in my nature to try to fix this for her or take it away somehow, I know that is not possible.  I can only hope to offer as much love, support, and comfort as I am able to give.

Now that Linda has a treatment plan and is beginning to adjust to her new life, she has become the one guiding those closest to her through these rough uncharted seas.  This metastatic diagnosis is harsh, overwhelming, and very difficult for all of us to digest.  As those who love her go through a period of grieving for the way things used to be, without knowing it, Linda offers our greatest source of comfort by persevering through this scary time with honesty, hope, humor, and grace.  I know that I am not alone in saying that I am incredibly blessed to have her in my life.

Linda has always been an overachiever in the things that she believes in and is passionate about.  She certainly did not choose this new endeavor, but I believe in her and her ability to overcome the odds!  I believe in Faith.  I believe in Hope.  I believe in Miracles.  I believe in the power of love and prayer!  And I believe with all my heart in Linda!

"Faith is to believe what you do not see; the reward of this faith is to see what you believe"

-Saint Augustine

                              

                                                                              

"Guest Post"-Saving An Angel

I'm convinced at this point in my life that everyone does, indeed, have a story to tell.  In telling our stories, we can educate others, make them a part of our lives and perhaps make the world better for it.  

Today I introduce you to my cousin, Jason, who has willingly agreed to share his story; I'm certain it will leave an impact.

When I first met her, she was a gift from heaven, my Angel. I was in the middle of a messy divorce and so was she. The two of us held each other up and carried each other through that difficult time and landed on the other side of it scathed, but not burned.  My situation never quite got better with my ex. Hers, on the other hand, resolved into a mutual respect for each other and doing what is right for the children. I have always admired that. For the nearly seven years that we have been together, my wife, Gina and I have faced several challenges just like any couple. We have helped each other through them, but there’s a part of me that has always known Gina has been my saving grace, my Angel. 

There has not been a moment in our relationship that Gina has not supported everything I do. Her generosities toward my artistic pursuits, my well being, and that of my children have been nothing short of miraculous. Gina has given me hope, love and life. Why then when she told me about her struggle with Polycystic Kidney Disease (PKD) would I do any less? 

PKD is a hereditary disease that affects 1 in 500 people worldwide. There is no cure, no treatment, and it never skips a generation. What it does is create fluid-filled cysts in the patient’s kidneys. Those cysts enlarge and limit the kidney’s function until they eventually become so big the kidney shuts down. Your kidney is about the size of your fist. A PKD kidney that is close to terminal is the size of an NFL regulation football. My wife is very petite. Her kidneys are now almost 10% of her overall body weight. 

Gina has known about her kidney problem since she was in her early 20s. Her father died of the disease around that time. We started our relationship later in life and she had been living with this for many years. Being very open, we often talked about it and what it would eventually mean for her – a transplant. Dialysis is the only thing other than a transplant that could prolong her life. Over the years we met with many doctors and found through research that dialysis and transplant do basically the same thing – one is mechanical and one is organic. It picks up cleaning the blood when the kidney can no longer do it. We aimed for transplant. 

It’s a scary proposition to look at the person you love and think, “They’re dying.” I tend to look at things a bit dramatically, but that was what went through my head daily toward the end of this adventure. You watch the person fade. A shadow of what was there remains, but the body changes and fights with the spirit to see who will hold out longer. Gina has a tough spirit. She fought tooth and nail to the last moment she could. Working fifty to sixty hours a week, still helping take care of our family, and doing all she could to retain a sense of normalcy. Watching this, what could I do but help lift my Angel’s wings back up?

We met with the transplant team in July of last summer. While there, they started Gina on her track to finding a donor. The first test was blood work. Well, while we were there, I figured, “I can give a little blood, you never know I may be a match.” I was. But I was also on three blood pressure medications, weighed 240 pounds (which at 5’7” is not good) and did not live the healthiest lifestyle. So, I met with donor services and they read me the riot act on what I had to do if I wanted this to work: lose enough weight to have a BMI of at least 35, which I did – I lost 20 pounds by October. Not good enough. My blood pressure was still too high with the meds. I was told in no uncertain terms that if I were not her husband, I would have been kicked out of the donor program by that point. 

That would not do. God and the Divine Closed Universe had brought Gina and I together for several reasons, not the least of which was to save her life. What did I have to do? Lose a total of 60 pounds. The doctor wanted me to be 185 pounds – less than I weighed when I graduated high school. Now it was a race against the clock. Gina was getting worse and we wanted to beat her needing dialysis. Over the next few months, I worked out a strict regimen of diet and exercise. The trouble was I was not able to use diet supplements etc. I had to do this naturally. With the help of the transplant dietician, we came up with a plan. 

I had to take a month off of all blood pressure meds and lose enough weight to bring down my blood pressure by Thanksgiving. I got myself to around 200 pounds and brought my blood pressure to normal. I needed to keep going, that 185-pound mark was still far off. By January, I was running four miles every morning and eating healthy enough that my weight was down under 190. We were cleared for transplant!

Gina still hadn’t started dialysis, but her kidneys were only working at 12% capacity. On February 11, 2013 I donated my left kidney to my Angel. It was the least I could do for her. She has done and continues to do so much for me. We’re both healing from the surgery and I am happy to report Gina’s new kidney has abated all of her symptoms of kidney failure. We’re looking forward to a lifetime of helping each other and others. We were extremely fortunate. Our match was miraculous. Most PKD patients are not so lucky. If you would like to help please visit www.pkdcure.org. The PKD Foundation is searching for a cure. With all of the genetic research that is going on, they are hoping to find a stop to PKD. My Angel, Gina and myself thank you for your help.

Thank you Jason for sharing your story.  Go check out Jason's talents on his website here and on facebook.  

Here's a favorite I found.  

There is no greater agony than bearing an untold story inside you.

Maya Angelou

Guest Blogger: Julie

Please welcome Julie as she debuts on my blog this week.  

Thanks so much for taking the time to share with us.

Moments

 July 21^st was a day filled with many moments.  Moments  are those little slices of life you want to tuck away for later.  The moments I will remember are close to my heart.  Dad hung up his dusty work clothes and worn out loafers and traded them in for a suit and tie.  One cannot truly appreciate this unless you know him.  Dad does not get dressed up unless it is for a funeral or a wedding.  Thankfully this was for a wedding.  On this day, I realized my nephew, or as I’ve called him for years, “little guy”, was no longer little.  He is a handsome young man (who looks stunning in a suit).  

  

Nana created her own moment  when she proved she can still play with all the kid toys and dance up a storm at another one of her granddaughter’s weddings.  

This was a day when two hearts, began to beat as one, my cousin Charlene’s wedding.  All weddings are unique and special but I knew this was going to be a fabulous day.  Charlene was simply radiant.  The day was plucked straight from a storybook, down to every last detail.  White tent overlooking the Newport water, old wooden farm tables with carefully selected flowers, mantels decorated with family wedding photos throughout the years, right down to a surprise song written and sung to Charlene by her “husband” (all men at the wedding are now wondering how they can top that for their bride).  Throughout this day and many days thereafter I found myself reflecting on a recipe for a happy marriage.  Maybe it is because two days after this spectacular wedding was my seven year anniversary.  Maybe it is because a wedding gets me reminiscing about my own marriage.  So here goes Cha and Doc, if there exists a recipe for marriage, it’s staying real and true.  I once read, “a recipe is one person’s take on one moment in time”.  Recipes are not rules, they are suggestions, something that got written down.  They are ideas, experiences along this path of what we call life.  Here is my recipe, remember moments , not days.  Take the time to make memories together, even if they are silly.  Those are the ones you remember the most.  Always laugh with each other (sometimes you’ll have to cry together too).  Clearly, Doc has already started your journey off by making a moment that will soon not be forgotten; singing a song written just for his bride!  Now that’s a moment  to remember.

Throughout this day I tried to capture special moments  to freeze in time.  There are many moments  I want to tuck away and keep forever.  I want to remember the moment Charlene appeared at the end of the aisle, looking absolutely exquisite.  I want to remember my little girl dancing her heart out yet pausing to refresh a minute with her Papa. 

I want to freeze the moment “my little guy” actually stood with me and laughed as our picture was taken.  

I want to tuck away the beautiful sunset god sent down as a gift.  The day was filled with blessings, some on the surface, the beautiful weather, the wonderful family (old and new);   some blessings we have to dig a little deeper to see.   These may be different for each of us.

Wishing Charlene and Andrew many moments  on this blessed journey called life. 

 “We are lucky, we’ve found love.  Now and forever it means the two of us.”    ~Andrew Soucy

Guest Blogger: Patti

Well, last time I wrote a post for Linda I talked about my challenge of becoming an “empty nester.” I have had a busy summer preparing for that ever looming day, including two graduation parties for my daughter, Kristen.  On July 6^th, we had a party at our beach house on Cape Cod for Kristen, and two of my nephews who graduated from high school and college.  


I almost didn't make it, due to the fact that I had spent two days sleeping in a chair next to my son Michael who was in the hospital with what they thought was appendicitis and ended up being diagnosed as Chrohn's. That’s a story for another day. Michael basically threw me out of the hospital and made me go to the Cape.  And, I'm so glad he did, as my father-in-law unexpectedly passed away twelve days later and that was the last time I saw him. He had just turned 85.  Michael is quick to remind me that he is the one who made me go.  

The second party started with a huge trip to BJ’s with three carts, by myself and multiple droppings of grape tomatoes, ( I could show up on America’s Funniest Home Videos)  We had Kristen’s graduation party at home with my family and many of her high school friends on July 14. It was a beautiful day! I cooked 21 lbs of pulled pork for 27 hours! I must say it was delicious along with pasta salad, meatballs and too large of a cake, which became a source of entertainment for my 24 year old! I told you, they don’t get any better as they get older. Tim began by just poking his fingers in the cake and then decided to move himself to the front of the cake and change “Congratulations Kristen,” to “Congratulations Tim!” You can see the results in the photos.

 It was a great day to celebrate with her friends and family as she embarks on this new chapter of her life!

In the end, it’s not going to matter how many breaths you took, but how many moments took your breath away - Shing Xiong.

Guest Blogger: Ellen

Dusk

By: Ellen 

As the dim sun sinks beneath the horizon

Beatles and crickets chirp

Colors of pink and orange flood the sky

Dusk awaits upon the clouds

Except the nocturnal, most are settled in bed

Fireflies flicker in the faint forest

Glistening in the night is a pair of yellow eyes

Howls come from a coyote

Iguanas nestle beneath fall leaf litter

Jaguars in Africa wrestle in dens

Killing prey is over for daytime hunters

Lions place cubs in beds by extra skin

Mountains hold shadows of mysterious shapes

Not many humans are out of bed now

One dozen girls are having a slumber party

Peeping red eyes of a tree frog are seen through leaves

Quarreling snakes hiss and stick out quick tongues

Rustles come from beneath the covers of a bed

"Seen enough TV, kids" , an angry mom yells

Television power buttons click off

Umbrellas are put away for tomorrow’s park stroll

Venus may still be lit up by its own moons

Waves in the ocean calm

X-ray machines are turned off until morn

Yawns are heard throughout the city

Zzzzzzzz……. Good Night

"Change, like sunshine, can be a friend or a foe, a blessing or a curse, a dawn or a dusk." -William Arthur Ward

Guest Blogger: Ellen

Please welcome Ellen, my 11 year old god daughter, as today's guest blogger.  

2 Families + 1 Vacation = Lots of  Memories

Earlier this month I spent ten days in southern Florida with my mom, dad, brother and sister (my real family) and also with my dance family.  We all met at the beautiful Westin Diplomat Hotel in Hollywood Beach, Florida for the American Dance Awards Nationals.  The hotel is located on the beach with awesome pools and a clear blue ocean.  Because my mom is the owner of our dance school our hotel room got upgraded to a huge corner suite with a living room, dining room, and large bedroom and bathroom.  The best part of the suite is that it had two walls made of glass with a wrap around balcony that overlooked the pools and the ocean.  If you turned the corner of the balcony, our room was just at the right angle to see the city too.

Although the hotel and all of its surroundings are breathtaking, the best part of the trip was being there to perform with my friends.  Seventy dancers from my dance studio were all there too!  How many eleven year olds get to go on a tropical vacation with all of their closest friends?  We call ourselves a ‘dance family’ because we are growing up together.  I am best friends with the dancers my age, but I am also very close to the older dancers.  They look out for us and set examples for us to follow.  My friends and I see what amazing dancers they are and how hard they work.  We all hope to dance like them someday.

Besides swimming in the pools, building sandcastles on the beach and having parties in each other’s rooms, the highlight of the trip was the dancing.  In addition to performing for the judges, we also got to take master classes from some of the best teachers in the business.  I have been lucky enough to take classes from movie, TV, and Broadway Stars.  Many times the dancers beside me have even performed in Broadway shows like Billy Elliot and Annie.  Schools from all over the US, Canada and even South Africa were there.

At the end of the regular competition, the judges decide which dances make the Dance Off.  I was hoping for at least one of all of my ten routines to make it, but I was thrilled when they announced that two had made it!  The next day we all performed our hardest in front of new judges at the Dance Off.

Finally it came time for the Awards Gala.  This is when all dancers, teachers and parents get all dressed up to find out who won. 

The American Dance Awards Gala is like the Academy Awards.  If you are one of the top scoring routines from the Dance Off then you are ‘Nominated’ and part of your routine plays on the big screens.  At last they started to announce the nominees.  My friends and I all held hands with high hopes.  When they called both of our dances I was shocked!  I felt so proud to see our hard work pay off as our routines played up on the big screen.  After the nominees were announced the audience settled down to hear the final results.  My friends and I squeezed each other’s hands even tighter.  My friends and I had never placed at the Dance Off before.  American Dance Awards is called the Ultimate Challenge because it attracts the most elite talent in the world.  And then it happened, we got 3^rd Place!  We couldn’t believe it!  We were all screaming!  Our reactions were even being filmed on the big screens!  We all beamed as the photographers took our picture with the huge trophy. 

 The rest of the gala is a blur.  None of us stopped smiling the whole night.  We felt like movie stars ourselves as all of our parents took pictures after the gala was over.  My friends and I had one thing on our mind.  We wanted to celebrate our victory with a late night swim in the pool!

 

I will never forget that Nationals, spent in such a beautiful place, with my family and my dance family.  I feel so fortunate to have people at home and at dance that I can count on.  I have already started to dream about next year’s Nationals which will be held in New York City.  I am sure that there will be more fun and more memories to be made!

   

There are Shortcuts to happiness and dancing is one of them.

 – Vicki Baum