Hurricane Sandy's Impact on NJ's Cancer Patients

Note: My home has made it through Hurricane Sandy with only minor damage to the roof. We are lucky to have power, internet & cable and our water is drinkable. Most of my relatives who live in various parts of the state of NJ are without power and many without water.  I have relatives and friends with homes on LBI, in Seaside Park and Ocean Beach III and Long Branch. Some know their homes are still standing while others have no idea.  We try to check out aerial photos for shots of their location since they are unable to get to those locations. I have another friend with a home in Monmouth Beach who had water up to their second floor and the home is now uninhabitable. But every single one of them is alive and safe. Thank God. 

Sandy was a huge storm affected almost 1000 miles of the northeast. But Sandy's impact on the lives of cancer patients is far reaching too. 

My cancer center, The Cancer Institute of New Jersey(CINJ)  is located in New Brunswick, NJ four blocks from the Raritan River. Sandy caused the Raritan River to flood its banks. The city was closed. Even Rutger's University located there is closed. I can count on one hand the number of times Rutgers has closed in its 200+ year history. There is a boil water advisory in affect and only essential and hospital personnel were allowed into the city. Power is out and public transportation is closed down.

Last night on facebook I read this post by CINJ. 
"Due to the hurricane, The Cancer Institute of New Jersey will be closed until Monday November 5th. Please share this as we are unable to distribute notification through email and on our website. Patients will be contacted directly. "

Robert Wood Johnson University Hospital RWJUH( located across the street from CINJ and its affiliate hospital) posted this:
"Important Announcement for all UMDNJ staff and patients:
UMDNJ has announced that they are cancelling all outpatient services for October 31, November 1 and November 2.
Patients and staff of UMDNJ should continue to monitor University communications outlets for updates.
 " 

The radiology group , University Radiology Group where I have my scans done posted this:

"Because of storm-related power outages, our offices will be closed Wednesday morning, October 31st until noon. We will be closely monitoring the outage situation during the morning hours. If power is restored to any of our facilities, we will re-open that office Wednesday afternoon. Status updates will be posted to this web site page, Facebook and Twitter when possible. Our staff will also be calling you to reschedule/confirm your appointment. " 

Those are pretty dramatic effects of the storm. 

I have or should I say had,  an appointment  for a port flush for tomorrow at 11:30 am. I get one every 6-8 weeks so I have a window in which to get it done. I am not too worried.

But I am thinking about my friends who are in treatment for recurrences. I think of all the cancer patients adults and children in treatment  in the region who are missing a dose of chemo or radiation or are unable to get a blood test. Maybe their facility is closed or  they can't get to treatment because roads are closed.  When Katrina hit New Orleans in 2005 I had just started my chemotherapy. I remember thinking how terrible it would be to miss a chemotherapy treatment.After all I needed to kill this cancer. And here is the same situation happening in my home state. On Sunday morning I had packed some things in case we needed to leave our home. The first thing I took out was my treatment binder - with surgical and CT reports and drug information. 

One ovarian cancer survivor I know had an appointment yesterday for a CT scan to see if she was back in remission and done with chemotherapy. She now has to wait. I feel that waiting and not knowing what is going on is one of the hardest things to deal with when diagnosed with cancer. 

This storm was unprecedented. I know the hospitals and cancer centers are doing all they can for their patients under the conditions they have experienced. 

 Back in 2006 I missed two treatments due to low platelets. At first I was upset but I rested, watched TV, painted and was ready to go the next week. So if you are reading this page and are missing a treatment, you may not be able to watch TV if your power is out I just know you will be ok. 

Dee

Every Day is a Blessing! 

 

Sandy

Sandy is currently about 250 miles off the coast of New Jersey. Meteorologists expect landfall in Atlantic City less than 100 miles from where I live in Mercer County.

My husband and I are prepared as best we can. We had a run at this preparedness last year during Hurricane Irene. We took in the patio furniture, bought water and food, have batteries and matches and a battery powered radio. Our cell phones are charged.We've gathered up important papers and are ready to take ourselves to the 2nd floor if the retention pond behind our home floods. I am taking pictures and will post after the storm.

The wind is kicking up and we are having some heavy downpours. Right now the power is still on but I am guessing that won't be the case later tonight.

Praying that my family and friends stay safe. Will update when I am able.

Dee
Every Day is a Blessing!

"The c Card and Me" - a review

In the past 7 years as a cancer survivor, I've read a number of books on cancer, how to survive cancer and cancer survivor stories. Some like " The Emperor of All Maladies ", "The Immortal Life of Henrietta Lacks" and " The Light Within~The Extraordinary Friendship of a Doctor and Patient Brought Together by Cancer" were outstanding. I learned from them. Or as I read them it was like being in my support group. Someone understood me and what I was going through. 

Other books I read though didn't offer me anything I didn't already know. They seemed to be too negative about the situation ( not that having cancer isn't tough) and offered me no hope.Or the authors just seemed to spend time talking about how great an experience it was for them without being realistic about those tough decisions that need to be made.  Or they included experiences I didn't have or situations I would never put myself in. 

When I first heard about the book "The c Card and Me" a few weeks ago I wondered how helpful the book would be.

So I received a copy and over the past two days I read the book written by Stage IV cancer survivor , Ali Gilmore.  Ali 's advice is right on and how she delivers it mimics how the ladies in my support group talk to each other- sometimes firm, many times with humor and always with compassion. 

The book title uses a little c because "Cancer is no more than a bully...refuse to give it credence... I use a lowercase letter, I imagine it shrinking in strength.". Ali offers advice about how to ask questions and how useful a port is. I had some pain with my initial port which differs from Ali but people are different and respond to pain and treatments differently.  The book describes the importance of hydration, how to ask for help with things around the house as well is with those pesky insurance issues as well as other issues important to cancer patients . The book offers hope too with a chapter "Do What you Love and The Healing Will Follow". 

I highly recommend this book for the newly diagnosed or currently in treatment.  Go to Amazon and order yourself a copy. 

For me I wish I could meet Ali Gilmore. I think we would have some great, and funny conversations. Wonder how she feels about IV poles? 

Dee
Every Day is a Blessing!

Hershey Chocolate Syrup and my Cancer Zone

Today I had yet another CT scan.It has been 7 months since my last one but since my CA-125 has risen  to a number higher than it was when I recurred back in 2008 my gyn-onc and I decided to check things out.  Of course it waited until after I did what I call my Fall Road Trip.

The Trip included a stop to see my son in Alabama where he is a graduate student working on his PhD. Then we were off to Florida for  a week at Disney World. The Epcot Food and Wine Festival was taking place so I got a chance to eat food from many different places-  Singapore, Australia, Greece , New Zealand and Poland. I also tasted a special Sam Adams brew which was a chocolate bock. We met up with a long time friend of my daughter who happened to be in Florida visiting her dad. And on the way back to New Jersey stopped in North Carolina to visit my husband's brother and his wife.

 




Since being diagnosed I have felt that instead of buying things I would rather have experiences  and share my time with family and friends. This Fall Road Trip was just that.

Last night though I re-entered the cancer zone.

I had picked up my drinks at the radiology office not far from my home before we left on our trip. It is a branch of the office I used to go to in Metuchen. But this would be the first time I would see them for a CT scan. They only had the plain  EZ-CAT drink .  I prefer to call it Yucky flavor. The receptionist told me something I had not heard these past 7 years. I had heard I could add Crystal Lite to the bottle but she told me I could add Hershey's Chocolate syrup to the drink to help it go down easier. So last night around 8pm I opened the drink bottle and added a good portion of Hershey's syrup. Well, what do you know? It tasted pretty darn good. And I drank it down.

I got up this morning and had to drink the second bottle. So once again I squeezed in some Hershey's. I'm not a big chocolate person in the morning but it sure made the whole process easier.

The CT went smoothly. The nurse at the office, Dawn , found a vein for the IV quickly and painlessly. I think drinking lots of water yesterday helped. I held my breath when the machine instructed and said a little prayer as the machine took it's images.

Now it is just a matter of waiting to see for my doctor to tell me the results.  Guess I will be in the cancer zone a little while longer.

Dee
Every Day is a Blessing!

Doxil Available

I first wrote about the Doxil Shortage back in November of 2011. It has been a year of anxiety for oncologists and patients.

As of Oct 15, 2012 doctors have full access to Doxil . Janssen the manufacturer issued  a statement that you can read in full here.

Hopefully with through the work of ASCO , the FDA and other organizations situations like this will not occur in the future.

Dee
Every Day is a Blessing!

One Less Women of Teal - Rita Kay

When I was in college  in the early '70's I met this really awesome woman. She was the Rutgers assistant athletic director. This was the time when the first few classes of  women were first accepted into Rutgers College. I was affiliated with Rutgers College while I studied at The College of Engineering ( as it was called then). I was also on the men's lightweight crew team as a coxswain. Ms Thomas felt strongly that the women should have their own team and fought hard to establish a women's team and it happened a few years later. Although I was invited to be part of the newly established women's program I continued with the men's team all four years.   I graduated and Ms Thomas  stayed on at Rutgers . She played a crucial role in developing  some of the best women's athletic programs in the country at Rutgers - from crew to golf to volleyball to basketball, soccer and field hockey.

Then about five years ago at a Gynecologic Cancer Support Group meeting at the Cancer Institute of New Jersey there she was,  Ms Rita Kay Thomas. But we were in a different fight this time.  We were fighting late stage Ovarian Cancer together. Rita Kay and I were in the same selenium clinical trial so we would compare notes about side effects, low platelets etc and laugh about all those darn Pk blood draws. She wore her signature straw cowboy hat to meetings. Sometimes she would add a long green wig or silly glasses with a big nose and bushy eyebrows.  She was always ready to use humor to help the other women overcome their nervousness and anxiety.

We both entered remission from the ovarian cancer.  But a little while later she faced another challenge, a breast cancer diagnosis.  She shared with the group the decisions that she faced about surgery and radiation .  We listened, prayed and  supported her choices.

When I recurred in 2008 and had surgery on my liver and spleen , she and her partner visited me in the hospital. What did we talk about? Rutgers sports of course and RU football in particular. I was sad I would miss going to a bowl game that year . She told me not to worry because there would be more Bowls to attend in the future. I wasn't feeling too sure of that at the time but Rita Kay was sure.

In 2009 Rita Kay and I were asked to honor our gyn-onc at the CINJ Gala. We both jumped at the opportunity and had a fun time.

In 2011 the crew teams at Rutgers honored Rita Kay by christening a shell in her name. So if you ever see the Rutgers crews rowing on the Raritan look for the shell named the Rita Kay.  

I knew when  Rita Kay was not able to attend the first  Rutgers Home Football Game this year that she was not feeling well. I spoke to her on the phone the next day. I did not want to give up hope that a new drug or procedure or clinical trial might be in the wings waiting to perform its magic on Rita Kay. Just as she had performed magic for so many women athletes at Rutgers. Sadly that was not to be and Rita Kay passed yesterday morning.

I was blessed to have had Rita Kay in my life.  I will miss her yellow crocks, her great sense of humor,  her straw cowboy hat and her love of a good beer. But especially I will miss my half-time walks at RU homes games from 224  down to section 125 to say hello.

Sadly,
Dee

Every Day is a Blessing!

New Events NOCC (10/13) and Pink Roses Teal Magnolias 10/28

Here are two NJ events to raise awareness of ovarian cancer or funds for research.

Join The Ship Inn and the in the fight against ovarian cancer!   The Ship Inn proudly presents... The 5th Annual Ovarian Cancer Awarness Benefit Saturday, October 13th • 6:00PM In Loving Memory of Ann Hall A special evening featuring... live entertainment, prize drawings, and most importantly - a signature Teal-Tini!! A special dinner menu will be featured with all of the proceeds to be donated to the National Ovarian Cancer Coaltiion ~Reservations are recommended~ The Ship Inn | 61 Bridge St. | Milford, NJ

Purchase tickets at http://assets.cooperhealth.org/pinkandteal-2012/purchase_tickets.php.


Dee Sparacio
Every Day is a Blessing!

Metastasis

I 've been thinking a lot about cancer metastasis and women with metastatic breast and recurrent ovarian cancer.

First, the definition of metastasis is

me·tas·ta·sis

   [muh-tas-tuh-sis] 

noun, plural me·tas·ta·ses  [-seez] 

1.

Pathology .

a.

the transference of disease-producing organisms or of

malignant or cancerous cells to other parts of the body 

by way of the blood or lymphatic vessels or membranous surfaces.

b.

the condition produced by this.

Source: dictionary.com

October is Breast Cancer Awareness month and October 13th is Metastatic Breast Cancer Awareness Day. Some women on twitter, facebook and in blogs  (http://womenwcancer.blogspot.com/, http://chemo-brain.blogspot.com/, http://www.tamiboehmer.com/) are upset with all those pink ribbons, pink products and walks and celebrations of survivors when there are women living with metastatic disease. Women with metastatic breast cancer seem to feel forgotten.

If caught early (Stage 0-II) the five year survival rate  for breast cancer is  74-93%. ( http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-survival-by-stage ) But some women are initially diagnosed with Stage IV disease where the disease has spread through the lymph system to other organs of the body and their five year survival rate is 15%. For other women their cancer returns a few years after diagnosis  and cancer cells are found in their lungs, liver,  bone or brain.  These women are living with the disease and will be in treatment for life. They are metastatic breast cancer survivors.

The number of women diagnosed with ovarian cancer each year is much less than the number  diagnosed with breast cancer  (  226,000 versus 25,000). Big difference.  The survival rates for stage III and stage IV ovarian cancer are 35% and 18% respectively. Not such a big difference with our late stage breast cancer sisters.  There is no screening test for ovarian cancer so  62% of all women diagnosed with the disease are diagnosed late stage.

Here is the thing, statistics show that 70-80% of women diagnosed with late stage ovarian cancer ( disease beyond the ovary)  will recur. Some women will have treatment ( surgery , chemotherapy, radiation) and go into  remission. Others never go into remission. These women  live with the disease as a chronic illness, they will be in treatment for life. I know a number of women who are living with the disease today trying new chemotherapies and entering clinical trials. And for the rest of us who have recurred once or twice well we worry when our next recurrence will occur. Not so different from our metastatic breast cancer sisters.

I urge breast and ovarian cancer researchers to talk more . Yes I know there are those who research  BRCA 1 & 2 mutations and recent studies with basal cell breast cancer (http://www.genengnews.com/gen-news-highlights/aggressive-breast-cancer-may-respond-to-ovarian-cancer-treatment/81247370/) . But there still may be a clue - a pathway, a gene , a protein as to why our cancer cells function as they do.

And to all those metastatic breast cancer survivors, your recurrent OC sisters are with you on the journey.

Dee
Every Day is a Blessing!




Sources :
http://mbcn.org/
http://www.webmd.com/breast-cancer/features/metastatic-breast-cancer-chronic-condition
http://ovariancancer.jhmi.edu/recurrentqa.cfm
http://www.ovariancancer.org/about-ovarian-cancer/statistics/

Making Memories

I love making memories. I am not talking about Kodak moments, special vacations or occasions. I feel that the time I have been given since my diagnosis is precious so making memories for me is simply  spending time with my family and friends.

When my daughter asked me to visit her in Kansas when her husband was busy traveling for work I jumped at the opportunity.  Did I have enough frequent flyer points to make a trip? Earlier this year, American Airlines applied extra points to my frequent flyer account after I experienced 2 delays (totally over 8 hours) in one day. That was a long day and I appreciate that AA gave me the points for my inconvenience. I checked my account and I was thrilled to see that  I had collected enough points over the past few years to book a flight. So off I went last week.

Spending time with my daughter and grandson was wonderful. On Saturday we went to a pumpkin patch outside of Topeka and then visited Wamego for OZfest. Wamego is the home of the Oz Museum. If you love the Wizard of Oz , both the movie and book, this is the place to visit.

The rest of the time we spent at home. That was not a problem for me because I was making memories with my grandson. He loved the rocking horse he got for his first birthday. It played two different tunes depending which ear you pushed. So he sat and rocked and I sang along."Ride'm Ride'm Cowboy....." 

He and I had fun playing with a drum and assorted musical instruments that his dad had when he was a child. He crawled around, stood up and took many steps while holding on to furniture and his pug dogs.  He loved pushing things around. Boxes of food, his box of toys, and  his John Deere rider toy, got pushed from one room to the next.   I was so happy that Terry's schedule required me to babysit on more than one occasion. I loved it.

One day I took my grandson for a long walk around the neighbor hood and saw these beautiful wild sunflowers.

I feel very blessed that I have had the time to make memories. 

Dee

Every Day is a Blessing!