Thursday, December 31, 2009

Getting To Know- Jo

Hello, my name is Jolene (yes, after the songs) but I go by Jo usually and I am the almost 35 year old proud mama of three heathen kiddos. My oldest son is 18 1/2 and in college, my only girl is 15, and my youngest son is newly 7. My husband and I will have been together 10 years this coming May. Boy time goes fast!

As far as cancer goes, my oldest two children and I have a rare genetic disorder called MEN2a. Basically it causes a rare thyroid cancer (medullary), adrenal tumors/cancer called pheochromocytomas, and we're finding out a bunch of fun non-cancerous things as well.

I'm not able to get chemo or radiation for my cancer so all we can do is cut out things until we're just not able to anymore. It's a harsh reality but I always know it could be worse. I am considered incurable which is why I'm on this blog. Like RivkA and the others, I will be living with this until it either beats me (I refuse!) or they find a cure. My oldest son has also tested positive for the adrenal cancer so I will be posting about his new struggles as well. I look forward to getting to know everyone and helping others with MEN2a.

Wednesday, December 30, 2009

Getting to know Dianne:

I’m 46 years old and have two kids, a daughter that is 18 and a son that is 17. I’ve been married to my best friend for almost 25 years. I’ve been teaching Math at the local Jr. College for 20 years and been a stay-at-home mom at the same time. I homeschooled both kids from the 6th grade through the 11th – it was loads of fun!

I found my breast cancer less than a month after a “clear” mammogram in 2008 (Infiltrating ductal carcinoma, stage IIB). I always knew I would get cancer because every woman in my dad’s family has died of breast or ovarian cancer. I’m hoping to break that chain.

So, after a bilateral mastectomy, an oophorectomy, eight rounds of chemo (interrupted by the development of a rare condition), Arimadex hormone therapy that landed me in the hospital after a month, another biopsy, Tamoxifen (for the next 5 years), and implant reconstruction surgery - I’m still here! It’s been a wild ride so far, but you’re welcome to join me on my journey.

Everything You Wanted to Know.... (about me)

Shalom Uvracha!!  (Peace and Good Blessings!!)

I am RivkA with a Capital A!

I'm 43 and married to my best friend (16 years).  Moshe and I have three kids:
Eldest daughter, age 15
Son, age 13
Youngest daughter, age 11

I moved to Israel right after college and, for years, I worked in informal education and tour guiding.  When my first child was born, I chose to be a full time, stay at home mom.  I loved being home with our kids, and being their primary caregiver. When my youngest entered second grade, I finally felt ready to re-enter the paid work force.  That's when I was diagnosed.....

In the summer of 2005, I was diagnosed with Stage ZERO, DCIS -- the earliest stage of this type of breast cancer, in which the cells are confined to the milk ducts and there is no risk that the cancer has spread.  I knew we were lucky to discover the cancer at such an early stage.  I told all my friends "I am the early detection 'poster child.'"

I had a lumpectomy and sentinel node biopsy.  All 8 nodes that were removed were clear, but the margins from the lumpectomy were not.  So I had a mastectomy and reconstruction (DIEP).

A year and a half later, I was done with cancer..... or so I thought.

In the summer of 2007, during a routine mammogram, an ultrasound revealed swelling in my lymph nodes.  Further tests revealed that the cancer had spread to my bones, liver, and lungs. I now had a diagnosis of stage FOUR breast cancer.  Everyone was in shock, including my doctors.

I jumped from being a "poster child" to being a statistical anomaly.  This was not supposed to happen.

It took me a while to understand that Stage IV is incurable.  For as long as I live, unless a cure is found, I will have breast cancer.  I have what the doctors like to label, "chronic cancer." 

Treatment is intended to halt growth/further spreading of the cancer.  There is no expectation that we will be able to get rid of all the cancer in my body.

The cancer responded well to my first treatments: Herceptin and Navalbine.  The tumors in my liver "disappeared" and the tumors in my lungs shrunk to the size of dried peas.  The tumors in my bones were "stable."

It also took me a while to understand that "stable" is a good thing.  I wanted to hear the word "gone."

After a little more than a year, the cancer started spreading again and I started taking Taxol instead of Navalbine.  When the neuropathy got too bad, I switched to Taxotere.

In the summer of 2009, an MRI revealed tumors all over my brain.  There were at least nine tumors, but we found them early.  One was 12-13 mm, the rest were all smaller than a centimeter.  I received 20 treatments of WBR (Whole Brain Radiation).  The radiation worked better than anyone expected and there is only evidence remaining from one or two tumors.

My treatment was completely switched over, and I now take Tykerb and Xeloda.  Both pills are taken daily, during a 3 week cycle.  I take 5 Tykerb pills every morning, without exception.  I also take 4 Xeloda pills in the morning and 4 at night, but these I only take for 14 days, followed by one "free" week, when I only take the Tykerb.  Then I start again; there are no breaks in between cycles.

I am also in a study about the new bone drug: Denosumab.  Once a month, I get a shot of this drug, to strengthen my bones and prevent breaks and fractures.

I have pain from the bone mets and take pain killers.  I am lucky that relatively mild pain killers are usually enough to dull the pain.

And that, as they say, is the end of that.

When I was diagnosed with mets, I started blogging ( Initially, my goal was just to let family and friends know what is going on, so I would not have to spend all my time talking about cancer and could talk about topics that interested me more, like parenting, philosophy, Torah, etc.  I also hoped my blog would provide support to other families living with cancer.

As my blog developed, I realized it provided support and inspiration for a wide range of people, from all different ages and backgrounds.

I garner strength from my ability to make good things come out of a bad situation.

I plan to live with cancer for a long time... at least long enough for them to find the cure!

Monday, December 28, 2009


All women facing cancer are welcome to join this blog.

This blog will focus primarily on mothers who have advanced breast (or other) cancer.

As women, and mothers, who will be living with cancer for the rest of our lives (or until there is a cure), we form a unique community.

Living with cancer is always a challenge.

Raising kids, while living with cancer, is an even greater challenge.

Together, we can share our experiences, our concerns, and our support.

Together, we are strong.

Anyone interested in joining, should contact me at: