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. 

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'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

Who is Libre Clothing? By Guest Blogger Megan Stengel

Hi readers, I’m Megan from Libre! I was honored and excited when Cancer Shop USA asked us to be their FIRST guest bloggers! We happily accepted.

Libre is a clothing line made specifically for chemotherapy, dialysis, and other infusion patients. Our clothing is an everyday staple in your wardrobe, BUT has discreet areas of access specifically for a patient’s treatment site. This makes it easier to wear easily accessible clothing, keeps you warm, and makes it easier on the nurses. You just zip open when you get there, and zip it up when you’re done.

This idea came about from my own mother’s problems. She was a dialysis patient for three years and during that time she would cut holes in her clothing so that the nurses could get to her fistula, but she would also be able to keep warm during the treacherous 4 hours. It would get so cold in the center sometimes, that she wanted to bring a blanked but couldn’t. Nothing was allowed to cover any part of the access at any time during treatment. Because of those problems, the solution was brought forth by Libre. Stylish, comfy, and warm clothing that made treatment easier for patients and nurses.

Libre was initially formed at Miami University in the fall of 2008. Myself, along with the 3 other co-founders (Mandy Eckman, Tess Schuster, & Bethany Skaff) were in a senior entrepreneurship class where each member of the class had to pitch an idea, then we chose our top ideas and formed teams for the business competition that was at the end of the semester. Each of us felt a strong tie to Libre’s purpose, since we’d personally watched family and friends had been through this, and decided that this is what we wanted to pursue after graduation. It’s been a long, hard, tough road but we are so happy with how far we’ve come in just 3 short years.

        

                                      
After starting with just 2 products (both being shirts), we have now expanded to 5 products, some of which include chest access as well as leg access, with multiple color options. We’ve began partnering with other organizations whose mission and purpose is right on course with ours, and that we believe in. We’re very excited that Cancer Shop USA has started to carry Libre products and are looking forward to seeing them on our blog shortly!

Thanks again to Cancer Shop USA! For more information you can e-mail us at Info@LibreClothing.com. You can also see our products on Cancer Shop USA’s site by clicking here.

Megan Stengel
Co-Founder; Libre, LLC

Stengel@LibreClothing.com

Answers to six common questions about cancer

Dr. Bone's Cancer Quiz:

1. What is the most common kind of cancer worldwide?

The most common cancer worldwide is lung cancer, causing over 1.2 million deaths each year. While 85 percent of the patients with lung cancer are or were smokers, more and more lung cancer is occurring that is unrelated to smoking.

In developing countries where smoking is more common and pollution is not as well regulated as in the United States, the incidence of lung cancer is rising.

2. Which cancer is considered the most curable?

Many cancers are curable at an early stage. Skin cancers, breast cancer, testicular cancer, and prostate cancer all have excellent prognoses when detected early. Skin cancer is easy to detect and treat if you are having regular skin checks. This has earned it the reputation of most curable.

3. Which causes more deaths in the United States: cancer or heart attack and stroke?

Though they are neck-and-neck, the combination of heart disease and stroke causes more deaths than cancer in the U.S., according to the Centers for Disease Control and Prevention.

4. Which cancers are most preventable?

Lung cancer is highly preventable by avoiding smoking. Having regular colonoscopies should reduce the diagnosis of colon cancer dramatically because precancerous growths can be removed before they turn into cancer. Cervical cancer, a major worldwide risk in developing countries, could be reduced dramatically by the HPV vaccine and by implementation of global screening for this sexually transmitted virus.

5. What percentage of cancer is probably preventable?

A full 3 percent of cancer could be prevented by not smoking, eating fruits and vegetables, and maintaining a normal body weight through regular vigorous physical activity. Unfortunately there are many socioeconomic barriers to attaining these goals.

6. What is the biggest risk factor for cancer?

Tobacco smoking is the highest risk for cancer.

These answers may seem obvious, but I was amazed at the number of people who thought that breast cancer was the most common and most deadly worldwide. We take it for granted that people all over the world know the dangers of cigarette-smoking, but data show that people living in other countries are unaware of the health hazards of smoking.

Few people realized how rare some cancers are in the U.S. For example, there are only about 11,000 cases of cervical cancer diagnosed in the U.S. annually, but this cancer is a leading cause of death in sub-Saharan Africa. Again, lack of effective public health education about the risks of HPV along with lack of easy access to health care, pose an enormous obstacle to prevention, early diagnosis and virtual elimination of this cancer.
I used to think cancer was an equal-opportunity disease, but I am beginning to see that it isn't. Members of the lowest socioeconomic class are more likely to get cancer and to die of it. A large portion of the population worldwide can't afford fruits and vegetables, let alone organic ones. They survive on a starch staple like rice. If they eat vegetables, they are not a variety of bright-colored ones, but rather whatever they can afford. Regular exercise is a luxury; millions of people who work 16- to 18-hour days just to eke out an existence will never jog or go to the gym. For those of us naive enough to think that poverty alone was bad, now we have to add susceptibility to cancer to really appreciate how fortunate we are.

 For a variety of products that can help you maintain a well balanced diet visit the nutritional section at Cancer Shop USA.

Surviving Life: Iodine may help reduce risk of breast cancer

By Dr. Melanie Bone.

"Doctor, please check my hormones. I am sure there is a problem. I'm tired. My weight keeps going up and up no matter what I do, and my hair is getting thinner. It must be my hormones. I'm so frustrated by people telling me it's 'nothing.' "

"Doctor, I have the lumpiest breasts. I can't examine them because everything I feel is a lump. I always need to have a sonogram with my mammogram because they are so dense. Am I at higher risk for breast cancer because of this?"

Thyroid disease. Breast cancer. Both are common, hormonal complaints seen in menopausal women. Are they related? How? If you'd asked me right out of medical school or residency, I'd have told you that they are mostly female problems, but not that they were causally related. Now, I am not so sure.
Facts: Postmenopausal women with goiters (enlarged thyroid glands) have more than 2 times the risk of developing breast cancer.

Women with fibrocystic breast changes have been treated successfully with iodine, the main molecule found in the thyroid gland.

Women in the "Goiter Belt" of America, where the soil is deficient in iodine, have a higher rate of breast cancer.

Japanese women who consume a large amount of iodine in comparison with Americans have a much lower rate of breast cancer.

The thyroid gland sits in front of the trachea (windpipe) at the bottom of the neck. Most people cannot feel or see their thyroid gland. The gland serves to regulate metabolism, hence the reason women who feel tired and have weight gain think it may be due to an under-active thyroid. Iodine ingested in food is concentrated in the thyroid gland and thyroid hormone is produced. T4 or thyroxine, contains 4 iodine molecules. T3, triiodothyronine, contains only 3 iodine molecules, and is made by the conversion of T4 outside of the gland. T3 is the active form of the hormone. It gets much more complicated, but suffice to say that the gland sequesters almost all the iodine in the body.

The recommended daily allowance of iodine is 0.15mg (milligrams) or 15 mcg (micrograms). In the United States, iodized salt has always been a major source of iodine along with other fortified foods. A requirement so tiny should be easily met, and yet it is not. With a shift away from using salt in our diet, there has been a drop in the average iodine consumption. Increased consumption of bromides in flour, soda, medications as well as increased fluoride in water and toothpaste/mouthwash both block the effect of iodine and worsen the problem. Lack of iodine is the primary cause of an enlarged, nodular thyroid gland called a goiter. The incidence of goiter is increasing over the past few decades because of the decline in iodine consumption.

Breast tissue is made up of glands, fibers and fatty components. Fibrocystic breast disease is a very common condition in the United States associated with painful, lumpy breasts. Fibrocystic changes are a risk factor for developing breast cancer. Women are advised to avoid caffeine, which promotes these changes, but it might be helpful to advise them to add iodine. Breast cells are sensitive to iodine. The milk-producing glandular cells of the breast concentrate iodine in breast milk in order to help assure that breastfed babies are not at risk for the complications of iodine deficiency. Studies show that iodine supplementation in the lab reverses precancerous changes in breast cells and improves fibrocystic changes in the breasts of rats. Likewise, women treated with iodine may feel less tenderness and few lumps.

Breast cancer is more common in areas where iodine consumption is lowest. The highest incidence of breast cancer in the U.S. is in the "Goiter Belt," an area inland in the region of the Great Lakes. The land in the region has iodine-poor soil and there is no native, iodine-rich seafood to consume. In contrast, Japanese women consume 25 times more iodine than American women and their risk of breast cancer is reduced. Think how often this statistic is attributed to soy consumption or lack of red meat. Perhaps it has nothing to do with soy or fat, but rather with iodine?


How much iodine is the "right" amount to keep breasts and thyroid glands healthy? This is a hotly debated topic. It appears that up to 1 milligram a day is considered safe, even though this is more than 6 times the recommended daily allowance. Doctors who are proponents of iodine therapy advocate up to 50 milligrams per day. This is more than 333 times the recommended daily allowance! The theory behind this level of supplementation is to replenish the gland and leave extra to be taken up by other cells in the body. Advocates of this regimen suggest that women be tested to see if they need higher dose iodine by challenging them with a 50 mg dose and then collecting their urine for 24 hours. If their body has sufficient iodine, 90 percent of the dose should be excreted. If they are holding on to more than 10 percent, they are labeled as iodine-deficient and advised to go on a high-dose supplementation protocol for months followed by lifelong lower-dose daily dose.


The caveat: There are not too many mainstream doctors in agreement about the value of iodine. Those advocating it, do the testing at proprietary labs and also sell the supplements. Luckily, you would have to take a bath in iodine before toxicity sets in. I wonder, though.

As a middle-of-the-roader, I believe that high-dose iodine may not be necessary. Up to 1 milligram of iodine may be very helpful, especially for women suffering thyroid goiter and/or lumpy breasts.

Seaweed salad and sushi for dinner?

CancerShopUSA can provide you with products that can help you maintain a healthy and balanced diet. Better yet, these products are approved by Dr. Bone. Check out the nutritional supplements section here.