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Not the center of the universe

4/28/2015

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As I mentioned in my earlier post, I attended the HealtheVoices conference in Jersey City earlier this month.  Janssen Pharmaceuticals paid my way, but my thoughts and reflections are my own.

There were over 60 passionate health bloggers at this conference.  I spent time talking to with folks with HIV, to folks with various inflammatory bowel disorders, to folks with diabetes, to folks with rheumatoid arthritis, and to one man with prostate cancer.  It was impossible to meet everyone there, but I enjoyed the interactions that I had.

One thing that stands out in my memory is that we all have a story.  My story is not the center of the universe.  Yes, it's the center of MY universe, but it's not the center at large.  And that can be scary.  Overwhelming.  Downright frightening.

There are a lot of hurting people in this world.  There are those who are consistently in and out of the hospital, dealing with life-long ailments.  There are those who face pain every single day of the year.  There are many who live with a stigma associated with their disease, adding emotional stress to physical problems.  There are those who have had major surgery to remove important parts of their bodies.  There are those who can have serious ramifications for not following the prescribed protocol for the disease inside their body which can result in catastrophic consequences.

While the diseases are different, we all had something in common.  We all have the desire to wake up each day and to give forward to others via a blogging platform.  Bloggers bridge the gap between doctors and pharmaceutical companies in that we are the face of those undergoing treatments and are willing to talk about those treatments.  It's one thing for someone at a drug company to say "this medication may cause nausea" than it is for someone to go online and say, "this medicine made me puke for days."  The personal voice gives reality to words on a page, especially when that voice is attached to a photo and to a link that may result in direct correspondence.

In the wake of recent health scandals, it's important to vet who you listen to.  Look for consistency in what someone says and look for reports of being monitored by a medical team.  While holistic approaches have their place in caring for the entire human body and psyche, if anyone claims that they are curing cancer by way of diet alone, that person is lying.  (Remember, my blog aims to focus on evidence-based scientifically proven treatments.)

There are some wickedly talented bloggers out there.  My approach to talking about my disease is more factual ... perhaps documentary in style ... while others take a more humorous approach.  I stand in awe of their abilities to do so.  It would be easy to be humbled into a point of despair when surrounded by such talent (I don't posses that much wit in my fingertips), but I know that my voice, while not the center of the universe, has its place.   

Naturally, I gravitated towards other bloggers writing about breast cancer.  While one of them was already a friend, I now consider myself fortunate to have three new friends as well.

Allow me to introduce you to Jen Campisano.   She writes a heartfelt blog, Booby and the Beast.
Diagnosed with Stage IV breast cancer at age 32 when her son was just five months old.  Five years later, she is currently free of disease, although she remains on treatment to keep her that way.  You will enjoy her blog quite a bit.  She is as delightful in person as she is on paper.

Heather Lagemann is the author of Invasive Duct Tales. 
Heather is another young woman diagnosed with breast cancer shortly after the birth of her child.  We are grateful that Heather is disease free and will complete her treatment for Her2+ breast cancer this summer.  What is troublesome, though, is that even though she will be able to declare herself free of cancer, she will struggle through the aftermath of having early stage breast cancer and the ongoing fear of it returning.  It's a whole different journey to walk that road and Heather does so with grace and humor.

Kathy-Ellen Kupps writes a column for Everyday Health, entitled Life With Breast Cancer.    Written with honesty and a down-to-earth reality, Kathy and relates what living with breast cancer is like in an easy-to-understand way.  She and I discovered that we have things in common ... including one of her oncologists being a lifelong friend of mine!  Yes, it is a small world.  

Ann Silberman writes Breast Cancer? But Doctor ... I Hate Pink!  She's one of those who wields a humorous pen, writing "living with terminal cancer can be fun ... just not for very long."  If you haven't had a chance to read her blog, you should take the time to do so.   Ann, too, is currently disease free, although, she, too, remains on treatment.

Five breast cancer bloggers in the same place.  All of us with a passion for research for metastatic disease.  All of us brought together with a common goal ... to become better at being online health advocates in order to make a change in this world.  Cancer brought us together, but life will keep us together.

Each voice is important.  Each person has a story.  Each voice matters.  Being passionate about what is close to my heart doesn't lessen others' stories, but meeting others with similar stories keeps the isolation at bay. 

While I am not the center of the universe, I am happy to be where I am.  Life is good and I'm grateful.


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From left to right: Kathy-Ellen Kupps, Jen Campisano, Vickie Young Wen, Ann Silberman, Heather Lagemann
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More tools in the toolbox

4/28/2015

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Ten days ago, I participated in the 2015 HealtheVoices Conference in Jersey City, NJ.  Janssen Pharmaceuticals paid for my travel expenses, but all thoughts, comments and interpretations are my own.

The goal of this conference was to empower online health advocates.  There was an impressive roster of passionate health bloggers writing about many different types of ailments:  breast cancer, ovarian cancer, cardiovascular diseases, leukemia (CLL, MM, WM), lupus, hepatitis C, HIV, inflammatory bowel disorders (Crohn's, colitis, etc.), mental health, multiple sclerosis, prostate cancer, psoriasis, rheumatoid arthritis and type 1 diabetes.  Many of the bloggers have thousands of followers and I felt out of place and amateurish compared to them.  I know that I generally fly by the seat of my pants when it comes to the blogging world and that there is a lot for me to learn. 

The conference had four breakout sessions that addressed the needs of someone like me ... somewhat "just starting out."  I learned more about how to analyze social media results and how to maximize my presence on social media.  The challenge will now be to put that advice into practice!

Another breakout session talked about the "write side of the law."  I thought I was pretty savvy on how to honor others' work, but alas, I learned I have done some things wrong and need to correct them.  For example, if I use a photo from the internet, just giving credit to the photographer and the site the photo was taken from is not enough.  Main point ... make sure I use either my own photos or those from public commons!

Monetizing your advocacy work was another workshop that primarily focused on getting paid for various parts of advocay.  While this isn't at the top of my list of priorities, it was helpful to learn some ways to start up a one-woman-shop in my home.

Dealing with compassion fatigue was the topic of the fourth breakout session.  The pointers given were much of what I had heard before, but the refresher course was welcome.  The biggest takeaway I got from that was to have a plan on how to respond to repetitive requests.  

Blogging can take a lot of time.  I still have to decide how much time I will continue to devote to this.  Minutes matter.  People matter.  Correct information matters.  Life matters.  And that's why I do what I do.
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A little bit of this and a little bit of that

4/22/2015

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    I'm happy to say that I've had a pretty incredible month of April.  After spending much of March in a depressed fog, experiencing the joy that has come with this month has been both welcomed and celebrated. 
    Michael and I went to New York City!  This was the first time there and it was fulfillment of a promise I gave him for his tenth birthday ... a special trip.  We were supposed to go somewhere during the first week of May 2012, but I was diagnosed with cancer in January 2012 and that trip never happened.  When the opportunity presented itself to go east, we took advantage of his spring break as well and off we went.
    It was such an amazing trip!  We stayed just blocks from Times Square and we experienced so much of the excitement that NYC offers.  Our very first view was at midnight, coming out of Penn Station and seeing the lit up Empire State Building.  The billboards of Times Square, the splendor of aerial views from both the Empire and the top of the Rockefeller Building, the incredible displays of the Natural History Museum, the glory of Lady Liberty, the solemnity of the World Trade Center ... we never tired of any of it.  Well, we did physically get tired, but we both unabashedly fell in love with the place.  We both would go back in a heartbeat.
    In the course of touring the city, I walked ten miles on Monday, eight miles on Tuesday and five miles on Wednesday.  Who is this person who has cancer all over her body?
    I felt like the visit was a vacation from cancer.  I was able to do everything I wanted and at one point, Michael said, "Mom, I can't keep up with you!"  That was fun to hear.  (Granted, though, he did better later in the week when my legs were hurting from all the walking!) 
    We left NYC and went on to Philadelphia to see friends.  I've been there before, but it was nice to walk among the historical buildings while visiting.  Our time there was very short.
    From Philly, we went to Pittsburgh to visit my sister who is there for some specialized treatment for Prader-Willi Syndrome.  My oldest sister and her husband, as well as my brother came for a short visit as well.  I also got to meet up with some friends who have stuck with me through primary and advanced cancer.
    From there, we made our way back to Jersey City.  I'll write about that part of the trip in a separate post. 
    Needless to say, this trip was one for the memory books.  It was hard to come back to Cancerland, but Tuesday found me back in the oncologist's office.  While I'm feeling great and have no major complaints, we did talk about what the next possible treatments are for me.  We know the cancer is increasing and the latest tumor markers doubling gives verification of that.  It's the largest percentage jump I've ever had.  I will have scans on June 9 to see if anything shows up and where that "showup" may be.  It was encouraging to hear what's in the pipeline and I'll just take things one step at a time.
    In the meantime, I've been referred to physical therapy here in Sunnyvale in order to learn some better stretching exercises for my back.  The PT group is under the supervision of oncology; therefore, they will understand the  special needs and concerns regarding the nerves and muscles in my back. 
    So that's it for now ... a little bit of everything.  I haven't touched my Bible project in a while, so I'm back at it.  I've got some plans in the making, but the most important thing is being so incredibly grateful for the gift of every day. 



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Conversations of the heart

4/6/2015

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Someone asked me "How long have you had cancer?"  As of today, I've been living with known cancer for three years, two months, two weeks and three days.  Yes, I'm that aware of the time involved!  :D

Nary a day goes by without my being aware of the disease in my body.  I wake up creaky and sore, but that settles down as I get my day started.  My back muscles hurt more than they used to, but pain levels are manageable with ibuprofen.  My hands and feet are doing fine on the current dose of chemotherapy.

I had a difficult March as I struggled through waves of depression and lethargy.  While most of my friends and family knew I wasn't at the top of my form, few knew how desperate I felt.  I was concerned that this was how I was going to feel for the rest of my life.  Fortunately, those four weeks (to the day!) seem to be correlated to the higher dose of chemo we had tried.  I'm now back on my former dose and seem to be doing fine.

My tumor markers fell a bit last month so perhaps the higher dose wasn't in vain.  However, I'm not sure I'm willing to take the higher dose if I'm unable to function at an optimum level.  We'll see.  I'll meet with the oncologist on the 21st to discuss any changes.

As you know, I've had to have difficult conversations with my children.  The hardest conversations I've ever had was to tell them (and my husband) that I had a terminal disease.  We've had some heart-to-heart talks about what this means.  We've dealt with the ramifications and we are accelerating some plans for their future (i.e. when they get their driver's licenses) based on my diagnosis.

Because I think of cancer every day, it's hard not to imagine that they do the same thing.  This morning, as I was driving Michael to school today, we were chatting about life and he made the statement, "I think I have a pretty good life."  I agreed with him.  I said, "Even though I have cancer, I can say that my 50s is the best decade ever!  Life just keeps getting better and better."

Then he said words that warmed my heart.  "Mom, sometimes I forget you have cancer.  I don't think about it every day."

A glow filled my soul.  My beloved son doesn't think about cancer every day.  These words filled me with joy and reassured me that our Savior is caring for and protecting my son's heart in ways I'm not aware.  

We celebrated the Resurrection yesterday.  It's very real to us, yet there's so much we don't understand.  Michael and I also talked about Heaven this morning and how we really can't understand it.  Both of us can be literal minded and his inability to process the idea of "forever" is very similar to my own.  Our finite minds have difficulties encompassing the infinite.  

Michael and I are going to the East Coast next week for some mother/son time.  Rachel will be going to a Giants baseball game with her dad and going to Disneyland with the church high school group.  (Both kids will be on spring break.)  Art will be going to a one day men's retreat.  We will be living life, all in awareness of the love and grace we've received, reaching out to others while being rejuvenated ourselves.

Because He lives, we can face tomorrow.
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Michele's Story

4/3/2015

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I seldom quite know how to describe myself when it comes to being a part of the metastatic breast cancer community. I make myself available in every way I can, all while trying to protect my children from the absolute harshness of the disease. They know it's fatal. They live with that knowledge every single day of their young lives.

I am now part of a community that is filled with death. The metastatic breast cancer world loses loved ones every single day. In 2012 alone, 512,000 women worldwide lost their lives to this disease. http://www.who.int/mediacentre/factsheets/fs297/en/ That's 58 deaths per hour ... almost one every minute of every single day of the year.

While I am a part of online support groups, I don't necessarily become friends with every single person in the groups. However, there are those who connect in a heartfelt way and a relationship is born.

We talk, sometimes, only by email and online chats, but also sometimes by phone and, if I'm lucky, we meet in person. We become more than names on a screen and we learn what makes us laugh and what makes us cry. If we have enough time, we get into the deep conversations that usually take years to develop, but because of the cloud of death hanging over our heads, we go straight there instead of wasting time talking about the weather.

And then, one of us dies. For now, I'm the one still left standing. While I am not numb to the deaths of my friends, I've learned not to talk much about them in front of my teenagers after they admitted how stricken they were when I attended so many memorial services in a short time period.

Online friends, rightfully so, tend to withdraw from their online community in the latter parts of their lives. They spend time in their physical present, allowing their family and loved ones to say their goodbyes.

Michele and I chatted many times over the past year. She was a brilliant anthropologist who lived in Rio de Janeiro and we spent many a late night chat session, discussing beliefs, culture, friends and, of course, cancer. While she had a community of friends in Brazil, her family lived in the United States, so in late December, she relocated to Florida to be with them in what she, deep down, knew were her last days.

Once in the States, Michele and I talked on the phone a few times. The last time I spoke to her was St. Patrick's Day, March 17. I was in my back yard and had kicked off my shoes and was laying on a bench, looking up at the bright blue sky that was broken with the sharpness of luminescent spring green leaves. Michele and I talked about green (of all things!), and about the meaning of life. I could tell she was more breathless (she was on oxygen at the time) and we both grieved over her leaving her home of 24 years and we grieved over her reality. We wondered why.

Michele died on March 27. I just found out yesterday and while I cried sitting at my desk, I didn't show much emotion to my family when I quietly told my husband later on. He took my hand and said, "I don't know how you do it ... how you can face each day when you lose the people around you, knowing your future most likely holds the same ending."

I don't know how to answer such a statement. I don't know how I do it either. Quite frankly, I don't think I "do" it. I firmly believe that there is something more than this life of mine that is way more important than my existence. This being Good Friday, I can, with assurance, say that my faith in a risen Savior is quite real, even if my understanding of my Savior is quite limited. At times, I long for the day when I truly see "face-to-face" and when I will truly understand.

One thing I have learned about myself, especially over these three-plus years with cancer, is that while I may not visibly show anxiety, that I do have anxieties (lots of them!) that come out in my sleep.

Last night, I dreamed about Michele. All night long. Every time I turned over, Michele was in my vision, in my thoughts, in my heart. She was 45 years old and she shouldn't have died. She should be more than just a memory.

And so I write this tribute in honor of Michele A. Markowitz, a blessed woman, a thinking woman, a woman of questions and a woman of conviction. A woman I am proud to call my friend. She loved and she is still loved.

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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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