Looking Good When Your Body Doesn’t Feel It – A Survivor’s Story

This is a guest blog post by Heather Von St. James, a Mesothelioma survivor.

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The beauty business can be wonderful, hard, lovely, and shallow all at once. But this was the career I had chosen, and I loved it. I specialized in cutting and color, but could do pretty much any salon service from pedicures to brow waxing. I had even done a body treatment or two when we were in a pinch.

I loved my job. I loved taking care of people and making them look and feel their best. I had a passion about my career that was contagious – and my clients loved it. I took great pride in having fun and colorful hair, on point makeup and stylish shoes. This was after all, and industry built on appearances.

I was part of this world for over 10 years when the cancer was diagnosed. I found out I had cancer just 3½ months after the birth of my only child. The pregnancy was incredibly easy. I had very little morning sickness, only gained 5 lbs. the whole time. The only problem was I was beyond tired. I had never been pregnant before and had heard fatigue was par for the course, so I didn’t think anything was amiss. Quite the opposite actually.

People always told me how good I looked. They said things like, “If I saw you from the back, I would never know you were even pregnant!” So I took it as a compliment that I hadn’t gained the weight that I thought I would. The only complication was Lily, my daughter ended up being a frank breech. I had to have an emergency C –section, but she came into the world a healthy 8 lbs., 14 oz.

After having Lily, I started losing even more weight, up to 5 lbs. a week. I chalked it up to breastfeeding and working full time. People always commented on how good I was looking, and that being a new mom sure agreed with me. I was the thinnest I had been in years! But the trouble was, I felt terrible. I was exhausted, I was having trouble sleeping, and I was having trouble breathing.

I just thought this is what postpartum was. I didn’t have anything to compare it to, so I just powered through.

Finally after 3 months of feeling worse and worse, and having more troubling symptoms, I went to see my doctor. After a series of scans and tests we had our answer: malignant pleural mesothelioma.

I was in shock. All at once, my world had come to a screeching halt. My life went from being a working mom, to medical appointments and scans. I would spend the next year fighting for my life through surgical intervention to rid my body of the cancer, followed by chemotherapy and radiation.

I was sicker than I had ever been in my life. I made my mind up early, though, that even though I was sick, I was still going to do my best to take care of myself. I figured, you can take the girl out of the salon, but you can’t take the salon out of the girl! Just because I had cancer didn’t mean I was going to stop caring how I looked. I was platinum blonde when I got sick, so I decided to dye my hair a darker brown, closer to my natural color, so it would be easy to deal with over the next few months. I figured it was only a matter of time before I lost it all due to chemo anyway, so why not have fun.

I found out later, that not all chemo causes hair loss, and the type I was getting happened to be one of them, so I never did lose my hair. What was sad, was one of my former co-workers accused me of faking cancer because I didn’t lose my hair. She seriously said that I probably was making everything up because “everyone knows you lose your hair with chemo.” All I could do was laugh and shake my head.

I found that many people said some really crazy things during my cancer battle. People would ask how I felt or how I was doing, and when I said the truth, basically I felt terrible, or was the most sick as I ever had been, I always got the same response. “But you LOOK good.” It was as if looking good made everything ok. And it meant that since I “looked,” good I obviously could not feel as bad as I said.

I began to wonder what I was SUPPOSED to look like… I guess I was supposed to be bald, not wear any make up, spend all my time in pajamas, and moan aloud all the time. I honestly think that is what many people expected, and when they saw me with my hair and makeup done, and dressed in normal clothes, it surprised them. I made every effort during my treatment to make sure I took the time to do those things. The truth of the matter was it made me feel better.

Being a cancer patient, you desperately want any sense of normalcy because everything is so NOT normal… for me? Taking care of myself and my appearance made me feel better. I wore normal clothes, not sweats or pajamas, unless I was in bed. I even got dressed up to go to chemo. I Joked that even though, I might be sick, I’ll be damned if I would look that way!

I was the only person I ever knew who wore red lipstick to get a blood transfusion. My elderly mother-in-law often took me to my chemo appointments, and all the nurses assumed I was there to accompany her for an appointment, not the other way around. I don’t think I’ll ever forget the looks of surprise, replaced by pity when they realized I was the one there for the infusion.

Over the last 10 years, I’ve learned that people don’t say these things to be cruel or unkind, quite the opposite actually. I believe they are trying to encourage, not disparage. I’ve learned to let the comments roll off, and instead of getting upset I try to educate, and I’ve learned myself what not to say to others who have gone through treatment.

I still care about my appearance. I have a shocking white blonde mohawk that has become my trademark. I like to make sure I look nice when I go places, not for other people, but for myself. When I talk to people I don’t know, they are always shocked when I tell them all I’ve been through. My scars are not visible unless I show you where they are.

You can’t tell from my appearance that I have only one lung or only part of a diaphragm. I’ve gained some of the weight back I lost during treatment, so it isn’t obvious what happened to my body as a result of the cancer – which is why when people still say, “Wow! But you LOOK so good!” I just smile and say, “Thank you.”

 

Thriving Through the Holidays

This post is brought to you in partnership with iThrive Cancer Survivorship Plan.

This time of year there is an anticipation of festive times with family and friends. But the holidays can also bring increased stress. While we often can’t control the amount of stress we have in our lives, we can control how we support ourselves during stressful times. This holiday season—and throughout the entire year—find time to focus on ways to rejuvenate mind, body and spirit. In this short five-minute video, the iTHRIVE five Rs of rejuvenation are discussed. These are gentle reminders of the many proactive ways we can give ourselves that extra support during stressful times. It’s time to thrive this holiday season!


 

About the Author: Karolyn A. Gazella has been writing about wellness since 1992. She is an award-winning publisher and the author of several books. Along with Dr. Lise Alschuler, she is the co-creator of the iTHRIVE Cancer Survivorship Plan. She and Dr. Alschuler also co-host a weekly radio show called Five to Thrive Live on the Cancer Support Network (w4cs.com) and iHeart Radio (iHeart.com). You can find more about their work at www.iTHRIVEplan.com.

Pay It Forward: Help Us Support Future Cancer Patients & Caregivers

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MyLifeLine.org Cancer Foundation has been connecting cancer patients and caregivers to their community of family and friends for support since 2007. We’re proud to have helped over 151,000 cancer patients, caregivers and family and friends give and receive support during the past 9 years and we are asking you to join our Pay It Forward campaign to continue to support all people impacted by a cancer diagnosis.

We exist today because generous patients, caregivers and their support communities have recognized the value of MyLifeLine.org and wanted future cancer patients to have the same support. We are asking for your help to ensure that all cancer patients feel supported.

You can make a big impact by Paying It Forward:

$35      Connects 1 Guest to a Patient Website with New Features in 2017
$50      Gives 1 Cancer Patient a Website to their Support Community for 1 Month
$160    Provides MyLifeLine’s Materials in 5 Cancer Centers
$322    Develops New Programs & Cancer Specific Resources for Patients & Caregivers

Your gift will help patients like Paige, who used MyLifeLine.org as a voice during her battle with Squamous Cell Carcinoma.

“MyLifeLine.org was a lifeline for me during my journey; it was my connection to the world, my connection to my own self, and a place where I could be encouraged by others.” – Paige, MyLifeLine.org member

Will you Pay It Forward and help us support cancer patients and caregivers in 2017? Click here to join the Pay It Forward movement.

How my dog’s cancer inspired me after my breast cancer diagnosis

This is a guest blog post by Petrina DiOrio, owner of Brewscuits, a natural dog biscuit company. Brewscuits will be donating $1 per bag purchased online from now to the end of the year to MyLifeLine.

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When I heard the words, “Your dog has cancer,” I was devastated. It’s Osteosarcoma, one of the worst kinds. When the same words came later to reference me, “You have breast cancer,” somehow I felt okay and prepared to face my journey because of the courage and strength that I learned from my dog, Chessie, when she went through her journey with cancer.

Chessie was a Chesapeake Bay Retriever that I rescued from a family who had four children and could no longer afford to properly take care of her. I adopted Chessie when she was four years old and had many wonderful years with her. Her cancer started when she was 10 and the vet told us to amputate her front right leg, but at that point but the sarcoma was actually way up in her shoulder. We didn’t think amputating the leg would do much to solve the problem. Treating her with chemotherapy and radiation seemed unfair to her at her age. We wanted her to continue to live and hike and play as long as she possibly could and not be in and out of the hospital for treatments all the time. So live and hike and play we did and boy did we have fun. Annual trips to Maine hiking in the dense woods. A trip to Cape Cod to play on the beach and in the ocean. Camping, swimming, running, playing ball. You name it; we did it.

Chessie lived an abundant, fun-filled, loving life her last year. And finally, at the age of 11, she let us know it was time. As the vet administered that last lethal dose of love to help Chessie finally be out of pain and cross the rainbow bridge to be with all of her other playmates and family, I let her go of her physical body but her spirit is always with me. Somehow Chessie’s courage and determination and trust in me that I would do what was best for her helped me with my own diagnosis.

When the doctor told me I had cancer I looked at him and said, “OK then, what’s next? What do we do from here?” His response was to schedule surgery and go from there. Within two weeks surgery was scheduled and I underwent a radical double mastectomy. My sentinel nodes came back clean, so there were no lymph node issues, which was great news. I opted for the double mastectomy since breast cancer runs in my family. My grandmother and both of her sisters on my mom’s side all had breast cancer. Rather than a lumpectomy followed by chemotherapy and radiation, I opted for the double mastectomy. Now five years and seven months later I am cancer free and I am in perfect health and living an awesome life. I married the love of my life and we have been together for almost 17 years now. We foster, rescue and take care of military family dogs when soldiers are deployed. We have an awesome all natural dog biscuit company called “Brewscuits.” Life really could not be much better.

Since Chessie passed away in 2004, we have had many more fosters and rescues come into our home. One of our current rescues, Tiki, helped inspire Brewscuits. Brewscuits are a hand-made, all-natural dog biscuit using the grain from the beer brewing process. We are homebrewers making our own beer in the comfort of our home and put our grain on our picnic table after brewing our latest and greatest brew. We let the dogs out and Tiki climbed on the table, stole the grain and shared it with his brothers and sisters. After some research we found that the grains were good for our dogs and we started making beer grain dog biscuits.

We upcycle a product that would normally be waste and create a treat for our dogs that is actually nutritious. Our biscuits contain barley, oats and rye which are grains our dogs should have in their diet to aid in their digestion. We use no corn or soy which our dogs cannot digest. We also use no salt, sugar, chemicals or preservatives. Our biscuits contain only a few simple ingredients – the spent grain (barley, oats, rye), flour, egg, and either peanut butter, pumpkin or sweet potato. For more information, go to www.brewscuit.com.

I’ve been given this wonderful opportunity to partner with MyLifeLine.org and share my story during breast cancer awareness month. We would love to give back to this wonderful organization. Brewscuits will be donating $1 per bag purchased online from now through the end of the year. Just use code “boobies” at checkout at www.brewscuit.com.

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Becki’s Breast Cancer Story

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Becki had no symptoms when she went in for a routine mammogram and was convinced that everything was normal. She later learned of her Stage III breast cancer diagnosis.

“I felt really numb. It was very shocking,” Becki recalled. “I’m a very positive type of person and I just assume the best. I had myself pretty convinced that everything would be fine.”

Becki’s treatment plan included a double mastectomy with reconstruction. She completed 16 chemotherapy treatments followed by 30 rounds of radiation.

During her cancer journey Becki leaned on the support of her husband and three children, along with her mother who is an 18-year breast cancer survivor. She also had a group of friends who helped provide rides, coordinate meals and keep her company on ongoing trips to radiation. About 15 people from Becki’s support group even came to her last radiation appointment and they all went out for lunch afterwards to celebrate.

MyLifeLine.org was a way for Becki to utilize her support group. She and her husband made updates on surgery and treatment progress, coordinated meals and rides as well as sharing photos. Becki now uses her site to share milestones with her support group.

Although Becki says sometimes she feels like cancer hasn’t changed her life, there are some positive differences since her diagnosis. Cancer has made Becki appreciate the little things more and be open to new experiences. She’s never had her ears pierced, but her young daughter wanted to get her own pierced.

“After I went through everything, I thought ‘I really don’t know if I will be here when she’s 12 to wait until that milestone to get her ears pierced,” Becki recalled. Together, Becki and her daughter got their ears pierced, which was a special experience for the both of them.

Becki’s advice to other cancer patients is to utilize their support system. “Don’t be afraid to reach out to people and communicate. Let people help you,” she advised.


To read more cancer patient stories, visit our Inspirational Cancer Stories page.

MyLifeLine Launches Caregiver Research Study

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MyLifeLine.org is proud to launch a cancer caregiver survey as part of a research study to understand the unmet needs of caregivers and how we can better serve them. This study is being done in partnership with researchers at the University of Colorado Denver.

Why is this study being done?

We know that cancer caregivers face unique needs and challenges while caring for their loved ones. This study plans to learn more about more about the support needs of caregivers of cancer patients, so that we can better understand how to support this caregiver population.

Caregivers of cancer patients are more likely to experience poor psychological and physical health, and this study may provide important information regarding the current gaps in support and opportunities for additional support in this area. The survey will help us understand online support needs as well as practical needs and potential tools for the caregiver population.

About this study

Your participation in this study is voluntary.  You have the right to choose not to take part in this study.  If you choose to take part, you have the right to stop at any time.  If you refuse or decide to withdraw later, you will not lose any benefits or rights to which you are entitled.

The survey takes approximately 20 minutes to complete and is open to all cancer caregivers who have actively cared for a cancer patient in the past 5 years.

Take the survey and share your experience.


We’re proud to partner with Celgene and Amgen to bring you this research initiative.

Healthy Recipes for Chemotherapy Patients

healthy recipes for chemotherapy patients

The importance of diet cannot be overestimated when it comes to chemotherapy. While a healthy diet is very important for someone undergoing chemotherapy, eating the same types and the same amounts of foods you enjoyed before diagnosis of your cancer may sometimes be difficult. You may feel anxious about eating enough of certain foods. Or you may become concerned about eating the “wrong” foods and eat very little at all. These reactions are normal.

During chemotherapy, you can continue to enjoy most foods. If you are worried about your diet and healthy nutrition during chemotherapy, or have questions, be sure to speak to your healthcare providers – they can provide guidance on proper nutrition during treatment since certain chemotherapy regimens do place restrictions on some foods.

Plan Ahead for Proper Nutrition

Sometimes cancer or chemotherapy can affect your appetite. Though you may not feel like eating, it’s important to do what you can do to maintain your calorie, protein and fluid intake during chemotherapy.  Here are some tips for eating while on treatment:

  • Cook in advance and freeze foods in meal-sized portions
  • Stock your refrigerator and pantry with prepared or easy-to-prepare foods for days when you do not feel like cooking; include foods you know you can eat even when you are not feeling well
  • Talk to friends and family members about ways they can help you with shopping and cooking.

It is important to remember to always speak with your doctor or nurse about any changes in your eating patterns and any problems you have with appetite, eating or digestion.

Healthy Recipes for Chemotherapy Patients

We’ve collected 15 healthy recipes for patients receiving chemotherapy. To get the full recipes, click here.

  1. Applesauce muffins
  2. Banana bread
  3. Banana-oatmeal hot cakes
  4. Multigrain pancakes with strawberry sauce
  5. Butternut squash, tomato and watercress soup
  6. Hearty vegetable and brown rice soup
  7. Mashed grains and cauliflower
  8. Brussels sprouts with pecans and dried cranberries
  9. Lasagna
  10. Pumpkin mac and cheese
  11. Easy spinach pie
  12. Penne with kale, tomatoes and olives
  13. Veggie pita pizzas
  14. Strawberry-melon smoothie
  15. Peppers with turkey and wild rice

For more information on healthy eating during chemotherapy treatment, click here.


This post is brought to you in partnership with Helsinn and Eisai.

 

 

Loss of Muscle & Weight from Lung Cancer

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This resource is brought to you in partnership with Helsinn and Lung Cancer Alliance.

If you have lost weight and/or muscle, you may have been told that you are at risk for or have developed cachexia.

What is Cachexia?

Cachexia is uncontrolled and unwanted loss of weight and muscle. It is seen in some serious illnesses, including lung cancer. Over half the people diagnosed with advanced lung cancer have cachexia.

What are the impacts of Cachexia?

  • How well you handle side effects of chemotherapy and other treatments
  • Whether you can complete your cancer treatment or not
  • How you feel, your overall well-being
  • Your ability to stay independent and do the things that are important to you
  • How long you may live

What can I do?

Cachexia and its symptoms can be treated and may be prevented. Continuing your cancer treatment is important because cachexia tends to improve along with your tumor response.

  • Nutritional assessment or consultation by a registered dietician.
  • Stay as physically active as possible.
  • Treat depression.
  • Control lung cancer symptoms and treatment side effects.

Learn more about cachexia, what it is, and what you can do about it in this free PDF.

 

Finding Hope through a Clinical Trial

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This is a guest blog post from the Cancer Support Community.

Elisa was in her early 30s when she was diagnosed with breast cancer. In the eight years since then she has been through surgery, radiation and six different chemotherapies. Early this year, she learned her cancer was progressing, and she was running out of options. Elisa lives in Chile. A friend, who is a cancer specialist, told her about an immunotherapy trial in Chicago for which she might be a candidate. Elisa and her mother made the long journey from South America to Illinois to be part of this innovative study. Right now, she is doing well. While the future may remain uncertain, being part of this trial has given her hope.

Bill is a successful lawyer, a husband and father. Twelve years ago, he was diagnosed and treated for a rare brain tumor. He went on with his life, until the tumor returned in October. Standard therapy offered little chance for a good or lasting response. His doctors in Chicago suggested that he go to New York for a clinical trial with a new targeted therapy. Now, he still practices law, takes care of his family and travels every few weeks for his innovative therapy.

What can we learn from these two stories?

First, by joining a clinical trial, both Elisa and Bill were treated with new therapies that would otherwise not have been available to them. Like many people with advanced or difficult to treat tumors, they knew that their best option was to consider joining a clinical trial. That put them at the forefront of cancer research. Both knew when they made the decision to leave their homes and travel to another cancer center that there was no guarantee that they would respond to the treatment. They made conscious choices to be a part of something that might make a difference for them, and for other people facing similar cancers.

It takes courage and belief to join a clinical trial.  Many cancer patients bring those characteristics to their experience. From the moment a person hears the diagnosis of cancer, he or she enters a strange new world.  This new world requires making decisions about treatment and care. For many, that may include the opportunity to join a clinical trial, yet another unknown territory. The hope that new treatments bring is a beacon of light in that world.

Elisa and Bill represent the people facing cancer who actively seek information about the treatments available for their cancer, who work as partners with their doctors and health care teams to make the best decisions about their care. They both made choices that involved dislocation, uncertainty and loss. They made these choices because the clinical trial represented something more important. They chose hope–hope for longer, better lives.  They chose hope for the future, for themselves, the people who love them and everyone who ever faces cancer. Hope is what inspires courage and belief. Hope drives clinical trials.

To learn more about Clinical Trials, check out the Cancer Support Community’s new Frankly Speaking about Cancer Clinical Trials program at www.CancerSupportCommunity.org/ClinicalTrials.

MyLifeLine.org Celebrates National #Ribboning Day

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In an effort to raise awareness and humanize the cancer ribbon, MyLifeLine.org launched National #Ribboning Day in 2015. In its inaugural year, National #Ribboning Day resulted in participation from InStyle Magazine, fashion designer Zac Posen, Ralph Lauren, Women’s Health Magazine and hundreds of other cancer supporters across the nation.

This year, we invite you to participate in the second annual National #Ribboning Day on Saturday, July 16.

How to participate in National Ribboning Day:

  1. Take a photo of yourself in the “Ribboning” pose with your body in the shape of a cancer ribbon.
  2. Post the photo to Facebook, Twitter or Instagram with #Ribboning and share who you are Ribboning for.
  3. Invite 3 friends to join #Ribboning and donate to MyLifeLine.org.

You can help MyLifeLine.org ensure that all cancer patients and caregivers feel supported throughout their cancer journey by making a donation to the #Ribboning campaign. Each contribution of $33 supports a cancer patient and their community for one year.

To learn more about the #Ribboning campaign and to make your donation to MyLifeLine.org, please visit www.mylifeline.org/ribboning.