Lindsey Graham, US. Senator ( SC) Responds to my email about Ovarian Cancer.....

If you have been following this blog,  you know that while I was in chemo treatment last week I sent my Senator, Lindsey Graham, a form letter blocked out by the Ovarian Cancer Alliance.  The email asked the Senator to:

·         Recognize September as Ovarian Cancer Awareness Month

·         Support appropriations of $20 million for the Ovarian Cancer Research Program in Fiscal Year 2014

·         Co-Sponsor the Cancer Drug Coverage Parity Act (HR 1801) or become a sponsor of the Senate bill when introduced

 

I also personalized the letter and asked that SC come in line with some of the more liberal states in our country and legalize marijuana for medicinal purposes. Synthetic THC made such a difference in my health when I was first diagnosed with cancer, legalized medical marijuana would help thousands of SC residents.

 

When I sent the email, I truly never expected to hear another word about my email. Today, I received Senator Graham's written reply to my email assuring me that he would keep my comments in mind when the Ovarian Cancer legislation came around in 2014.

 

 

Senator Graham, I would like to personally thank you and your office for taking time to respond to my request. As a Californian born and raised, you have no idea how unusual it is to have a public official respond to a request made by a constituent.

 

If you would like to urge your senator to help Cancer patients in your  state go ahead and send them a letter. If you would like to use the form set up by the Ovarian Cancer Alliance follow this link:

 

http://capwiz.com/ovarian/home/

 

If you are in SC and you would like to contact Senator Graham about Ovarian Cancer, his blog address is http://www.lgraham.senate.gov/public/

 

 

 

 

       

 

 

Please Participate in this Cancer Prevention Study!!!! Help find a cure for cancer!

I am posting this one more time in hopes that all of you that are eligible will sign up for this study with the American Cancer Society. (Particularly if you are related to someone with cancer!!!!) If you  have never had cancer - this is something you can do to help! Dedicate your participation to someone you know who is affected by cancer.


 Go to this and participate in this simple research survey. Just click on this

link:http://www.cancer.org/research/researchtopreventcancer/participate-cancer-prevention-3

Participate in this study and help Cancer Research.....

Here is something you can do about cancer. Go to this and participate in this simple research survey. Just click on this

 link:http://www.cancer.org/research/researchtopreventcancer/participate-cancer-prevention-3

Survivor's Blog- July 18, 2013 A little boost to get me down the road....

Yesterday, I got the nicest surprise- it was the kind of surprise that boosted my spirits and should help me make it through the next few weeks of treatment! As many of you know, I have been having a hard time as a cancer patient this time around. My body is very tired of all the therapies. Emotionally, I am tired of practically living at the SC. Oncology Associates Office. I try every day to remember to be grateful for what I have and look forward to when I will be through with all of this and cancer free. Sometimes staying upbeat is really hard.. so what happened to me yesterday was wonderful!

As many of you know, I have continued to work despite my doctor's wishes. I have also tried to keep up with some of my other interests as I am able to. One of the things I love  most is gardening. When I was diagnosed with cancer in 2011 and became sidelined I was not able to garden much, which has been hard for me. I was in chemo treatment one day checking my email, when an invitation to take the South Carolina Master Gardener's class at Clemson popped into my inbox. I remember opening it and saying to Erin, "I always wanted to take this class,  it is ironic that now that I am off work and have the time, I can't take it because I am on chemo." My chemo nurse, Kathy, overheard us talking and told me that they actually had a patient take and pass the class last year. She told me to sign up for class and go for it. So I did.

Beginning in 2012, I started the three months of weekly classes that it took to be a Master Gardener. I also started to do volunteer work around town so that I would have the 40 hours required to be a Certified Master Gardener. I was so excited to get a great grade on the Master Gardener final and I worked really hard toward my volunteer hours. Then for some inexplicable reason I started to get sick again, and I had to start chemo all over again. The second time around wiped me out and I was unable to finish the gardener's certification on  schedule. My classmates all received their certificates at a gala this June-- while I stayed home and dealt with the big C.

Yesterday, the Master Gardeners had their annual Tomato Tasting and meeting at Saluda Shoals Park. They invited me to come and even offered to come pick me up if I did not feel up to driving myself. I decided since I had to have treatment yesterday anyway, I would just swing by the park on my way home and sit in on as much of the meeting as I could. We had a wonderful lunch and it was so  cool to see many of my friends from class!

The best part of the day for me though was the surprise they had planned for me..they called me up to the front of the room and Certified me as a SC Master Gardener!!!

Myself and Vicky B.

 

Photo taken by Clinton Bryson

 

 

 

Ovarian Cancer Alliance- Open Letter to your Senator

Hi Everybody,

The Ovarian Cancer National Alliance is trying to encourage our government officials to take Ovarian Cancer seriously.  Please read the message below and encourage our elected officials to take action!

 

Help us take a message about ovarian cancer to the halls of Congress!

 

Dear friend:    There is no known cause of ovarian cancer and no reliable early detection test.   Today a group of advocates will meet with their elected officials in the House of Representatives and the Senate to discuss issues important to the ovarian cancer community. If you aren't on the Hill with us in person, join us virtually and stand up for ovarian cancer survivors in your community. We need your voice to ensure that Congress makes progress addressing the needs of our community--your elected officials need to hear from you! Taking action is easy and only takes one minute!   For the 22,000 women who will be diagnosed with ovarian cancer in 2013--and 183,000 women living with the disease--please join us in asking our elected officials to: Recognize September as Ovarian Cancer Awareness Month Support appropriations of $20 million for the Ovarian Cancer Research Program in Fiscal Year 2014 Co-Sponsor the Cancer Drug Coverage Parity Act (HR 1801) or become a sponsor of the Senate bill when introduced It is as easy as sending an email!   Click the Take Action button to send an e-mail to your elected officials today. Please remember to take action on both alerts at the link--we have separate messages to send to your representative and senators!

Article by a new friend.. Cameron Von St. James

As many of you know, my original intention with this blog was to present helpful tips for Ovarian Cancer patients in two forms; simple tips written and tested by me, and articles written by folks who have gone through this with family members of friends. This article came to me in the most wonderful way, it is written by someone who was out searching the web and stumbled across my blog. He emailed me and wanted to share the inspiring story of his wife, who is a cancer survivor just like me!

This post is written by Cameron Von St. James, he is the husband of Mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36.  A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease.  They hope that by sharing their story, they can bring hope and inspiration to people with all forms of cancer. They live in Roseville, MN with their daughter Lily.  Cameron is now a systems analyst at U.S. Bank.

Please keep in mind as you read posts from guest writers that I do not edit or change anything they have sent me. I ask survivors to write about what simple things most helped them during their illness. I ask friends and family to let us know what one thing were they able to do that helped their friend or loved one most during their illness?

Here is what Cameron has written for you to enjoy:

Determination: The Key to Surviving as a Caregiver

On November 21, 2005, only three months after the birth of our only child Lily, my wife Heather was diagnosed with malignant pleural mesothelioma. On that day, I instantly became the caregiver for a cancer patient. Instead of joyfully preparing for Lily’s first Christmas, we were suddenly plunged into a life of chaos.

The responsibilities of a caregiver hit me hard on the very day that my wife received her mesothelioma diagnosis. After the doctor uttered those fateful words, he explained to us a little about mesothelioma and available treatments. No experts in mesothelioma were available locally, although some excellent cancer-care facilities were in the region. In Boston, however, there was a specialist in mesothelioma treatment. My wife, Heather, sat staring at the doctor, her face pleading for someone to help her. I blurted out, “Get us to Boston!”

In the coming weeks, our routines were completely shattered. Heather had to quit working, and I was only able to work part time while also transporting her to treatments, arranging care for Lily and making plans for our trip to Boston. Meanwhile, my fears of facing life without Heather grew. At times, all I could do was lie on the kitchen floor and sob, but I never let Heather see my distress. I needed to be her rock through this ordeal.

When things seemed completely unmanageable, help from family, friends and strangers would come to see us through. During this time, one of the biggest lessons I learned was to accept help whenever it was offered. Without this help, I would never have made it through this difficult time.  Take it from me – there is no room for pride in a battle with cancer. 

It took years for our lives to return to normal after Heather’s fight with cancer. Despite all odds, after mesothelioma surgery, chemotherapy and radiation, she emerged victorious. Now, seven years later, she is still cancer-free. As a result of this ordeal, I have learned that my stubborn nature can be an advantage to help me get done those things that need to be accomplished.

After having learned a lot about time management and perseverance, I returned to school in information technology to fulfill my dream of earning a college degree. Five years following my wife’s cancer diagnosis, I graduated with high honors. In my speech on graduation day, I encouraged others to never give up hope. With a healthy dose of determination and courage, anything is possible.  Now, we hope that by sharing our story, we can help others currently in their own battles with cancer today.

Survivor's Blog- July 11, 2013 Quick update on my chemotherapy and treatment..

Hi Everybody,

First of all, I would like to thank all of you for bearing with me as I go through this most recent set of chemo treatments. I know I promised you daily ( or close to daily) blog articles but, I have to bow the wishes of my body lately. This is why I also have not been calling many of you as much.. even talking wipes me out lately. I started chemo in January of 2013 and six months into treatment I am so exhausted that I spend a great deal of my time sleeping. If I can't sleep due to the steroids, then I am just resting.

The sleep allows me to accomplish just a few things each week. I can teach two or three simple two- hour classes at Michael's, so that I get a little bit of socializing in each week ( as a bonus I get paid). I can also make sure to do my couponing and keep the house stocked with groceries. I have to admit that lately I am using the handicapped scooter to do my shopping. I will warn any of you who live in my neighborhood and shop at Publix, I am the worst scooter driver in the world----WATCH OUT!!!!!! Finally, if I plan my time well I am still cooking a few simple dinners a week. So for those of you worried about Oscar, he is still being fed!

I just finished up my first three week round of chemotherapy using Topetecan. The results so far have been positive. For the first time in months, I did NOT have an allergic reaction to the chemo. This means this is a drug I can stay on for now. The second bit of good news is this: my CA125 blood levels have dropped significantly for the first time in months. My CA125 number is now 70. This is great news! It means that if I can finish the next two three-week cycles of Topetecan and the Pet scan that follows is clear, I will be off chemo for good. So wish me luck, and keep me in your thoughts and prayers. I have one week left in my second Topetecan cycle and then one final three week cycle after that- -if all goes well my last chemo treatment will happen on August 19th!!!

The other bit of stellar news we have had around here is that Coaly our beloved doggie is OK! Those of you here in town know that he had either a stroke or a seizure about 10 days ago. The vet could find no reason for the incident and he seems to be just fine now. So we are feeling very blessed that he is OK!!!

Hopefully, each week will be a little easier from now on......