A Caregiver's Journey

Hi my name is Susan and I live in Palm Beach Gardens, FL. I am a forty-eight year old mother to my seventeen-year old daughter. I am also twice widowed to cancer. In 2004 my husband Peter was diagnosed with acute leukemia, our daughter was ten. He was in five hospitals around the country and then died eleven months later on February 14, 2005.

I married again to Paul in 2008. Seventeen months later on February 23, 2010 he died of colon cancer spread to the lungs and bones. My daughter was sixteen.

“Life is what happens when you’re busy making plans” should be my bumper sticker, if I liked bumper stickers. I am writing on this fantastic cancer website because I know how it is to be a full time and overtime caregiver. I know of the silent fear, exhaustion, frustration and isolation. I know what it is like to discover strength you never imagined you harbored and for a second you’re proud of yourself but wish it was put to use for something much happier.  I know what it is like to look at my drug filled thin spouse and not remember who he was before cancer. I know what it is like to wonder what the hell my family talked about before cancer. I know what is like to juggle the roles of spouse, parent, nurse, cheerleader and somehow now cancer expert all at the same time. I also know what it is like when you drop one or sometimes all the roles...breakdowns happen! They happened to me.  I also know what it is like to want to scream at the next person who tells you how strong you are just when you want to be taken care of yourself.

In my experience as a caregiver I felt there was no one to talk to and nowhere to go where I would be understood. I believe if we connect to others going through the same pain and suffering then our individual story becomes part of a much larger story. We have each other to listen to, help accept our feelings and let them move through us and make space for the new ones. The new feelings can also include courage, compassion for strangers and gratitude. The heart gets very heavy when pain and fear keep building up and are never released. I went to one weekly support group in Seattle when my first husband was there for a bone marrow transplant. I savored that one-hour where by sharing; my heart seemed a bit lighter. By listening to others, I learned new insights and ways of coping. I discovered humor is a beautiful release and I didn’t have to feel guilty about cracking a smile when my husband was so sick.

In my marriages the cancer won the battle, but in so many more cases it does not. No matter what it is, a disease that affects the whole family, the patient gets treated for the bad cells and is nurtured for being ill. I believe the family needs to be nurtured as well. I raised my daughter from a girl to young women during these very trying years. I learned a good thing for her was for me to let others help. Receiving can be tricky so I try to remember that a load is much lighter when we all lend a hand. Again we can lighten each other’s hearts when we are able to give and receive, when we share. My daughter is doing beautifully. She misses her Dad everyday of course but I taught her when he was terminally ill that the physical relationship ends, bodies die, but the spiritual relationship is eternal. We talk to him all the time.

So I would treasure the opportunity to hear from others who are going through their care giving experience to listen to your stories and be honest with each other about all the layers of living with cancer. Diagnosis, treatments, emotions, finances, intimacy, children and learning to smile politely through the stupid things people find to say but mean well. To tell you how I handled life in the cancer world and life out side it. To me they were two very different places and I struggled greatly on finding a place in my heart I could live peacefully in both at the same time.

I long to offer that lightness I felt in my one support group in Seattle. This website can bring us together, not in the same room but in the same story full unique and precious chapters. 

For care giving tips follow us on twitter by clicking here!

 

'Triple negative' Cancers Tend to Be More Aggressive

Dear Dr. Bone: What is a "triple negative" breast cancer? Is it bad or good to have that kind?

J.M.

Royal Palm Beach

Dear J.M.: While many people believe that breast cancer is one disease, that isn't the case. There are many different types of breast cancer and each responds uniquely to treatments. The term "triple negative" refers to the absence of estrogen receptors, progesterone receptors and HER2 (human epidermal growth factor) receptors on the breast cancer cells. Cancers that do not feed on estrogen or progesterone and do not over-express HER2 are called "triple negative." They cannot be starved of hormones nor can they be treated with the drug Herceptin, designed for HER2-positive patients.

These cancers are not as common as those that respond to hormonal therapies. Less than 20 percent of cancers are "triple negative." They are more often seen in younger women and in women with the BRCA 1 gene mutation. They tend to be more aggressive and need to be treated with chemotherapy and radiation therapy. Overall, the prognosis with these cancers is not as favorable as their "triple positive" counterparts.
I hesitate to judge "triple negative" cancers as better or worse than others. When detected early and managed by a skilled oncology team, patients may do very well. And, if they do not have a recurrence in the first three years, they are no more likely to have their cancer return than the more common hormone-positive cancers.


Dear Dr. Bone: Having lost my sister to breast cancer, plus countless friends and neighbors, I read your columns pretty regularly. Thank you so much for your level-headed and common sense applied to developing technologies.

I wanted to make one comment on your Palm Beach Post column on Aug. 2, concerning the family dealing with the mother's cancer combined with the young son's cold sores. After living/fighting with cold sores most of my life (I have turned 70 this year), worked in hospitals with doctors and pharmacists trying to suggest treatments to help, I finally found the L-Lysine approach. For the first time in my life, even after the tiny blisters had begun to form around my mouth, taking mega-doses of L-lysine made the blisters go back down and totally clear up in a matter of days, not weeks. As an adult, when I first see the blisters begin to form, or when I feel that burning sensation that tells me a cold sore is forming, I take 1,000 mg of L-lysine in the morning and again in the evening, and continue until all signs have disappeared. My brother (who lives in California) has also had a similar problem, and since I shared this information with him, he always has a supply of L-lysine on hand for occurrences and has had the same results I've had.

It's a quick, inexpensive, non-habitual treatment with quick results that might make a difference for families with young children.

JF


West Palm Beach

Dr. Melanie Bone is a cancer survivor and gynecologist who practices in West Palm Beach. To send questions for her Q&A column, go to www.cancersensibility.org. You can also visit Cancer Shop USA for the best doctor approved products that can help you deal with the treatment of cancer.

New Cancer Shop USA Site Goes Live!

Cancer Shop USA strives to provide cancer patients and followers with the greatest products available in the market today. That means, products that can actually help cancer patients manage the side effects of cancer treatment such as chemotherapy, radiation and surgery. So what sets Cancer Shop USA apart from other Cancer products providers? The products featured on the site have been approved by a cancer survivor who is also a Gynecological Surgeon as well as the founder of Cancer Sensibility foundation. In short, you no longer have to spend money buying cancer therapy products second guessing if they work or if they are out to simply make a profit from cancer patients. And the best is yet to come as the new cancer shop USA site has gone live making it easier for patients to search for products that range from dietary supplements to products that have been designed by former cancer survivors. For the best products at affordable prices check out Cancer Shop USA now!

My Journey with Lung Cancer

My name is Christine and I am a lung cancer advocate.

One might wonder how a person is inspired to become an advocate for the leading cancer killer in the world, the one that receives the least amount of funding due to its ENORMOUS amount of (unfair, unjust and incorrect) stigma. I am here to try and explain this.

My journey with lung cancer began when I was a teenager. My step grand dad was diagnosed with lung cancer when I was just 17. I knew absolutely nothing about lung cancer nor did it truly have an impact on me, aside from the fact that it stole my Grandpa Don from me.  It never made any difference to me at that age that it was lung cancer that killed my grandpa. I was a self absorbed teenager with life to live.

In 2002 I met Brad, a very successful 27 year old engineer who owned his own oil company. We met online and as time went by we developed an incredible friendship. Brad was one of the most health conscious people I have ever known. He never smoked; he only drank in moderation and spent hours and hours at the local gyms. Brad only ate good and healthy foods. I used to kid him and say he could have been the poster boy for healthy living. Unfortunately, Brad was diagnosed with lung cancer in 2005. It was more than just a shock for me; it was life changing. Brad lost his fight in December of 2006; a mere 3 months after his diagnosis.

In 2009 I was faced, yet again, with the lung cancer demons. This time, it was my 71 year old step father, Jerry. He was a US Navy veteran and was employed by a local mill as a machine shop worker. He was a lifelong smoker.  His entire cancer journey, like Brad’s lasted 3 months from the time he was diagnosed.

All of these people were hugely important to me; they played major roles in my life. Having learned so much from Brad’s diagnosis and after seeing the disparities in the way lung cancer is viewed, funded and treated, I decided that I had to do something to make a difference. Out of these losses came my initial venture into cancer advocacy. I created www.cancergrief.com as a clearing house for information and support. I decided that I needed to focus solely on lung cancer and after a lot of thought; I created the Make Some Noise For Lung Cancer network which began as a Facebook page and has now grown into its own website.  Today the Facebook page is home to 2,500+ members.

I am very happy and honored to now be a part of the Cancer Shop USA family. I have written a book that chronicles my journey to becoming an advocate for Lung Cancer patients which is available at Cancer Shop USA

I appreciate the time you took to read my story at the Cancer Shop USA blog.

Wishing you well

Always, Christine