Survivor Slimdown

In 2018, there will be an estimated 1.7 million new cases of cancer diagnosed in the U.S., with that number estimated to be 23.6 million worldwide by 2030. Thankfully with advances in medicine, the number of survivors of the disease is also on the rise. The National Cancer Institute reports that in 2016 there were 15.5 million cancer survivors in the U.S. and that number is expected to increase to 20.3 million by 2026.  Cancer Survivorship is an area that continues to be studied, as practitioners seek to help patients learn to live life beyond cancer.

Cervivor has found that many cancer survivors emerge on the other side of the disease ready to tackle life, but often what is waiting for them is an unhealthy lifestyle. Obesity is a known factor for the development of other co-morbid illness, prevalent in cancer survivors such as diabetes and heart disease and can feel like an up hill battle. Survivors regularly struggle with depression, anxiety, motivation, and weight issues that are often intertwined and connected to one another. We see and hear this message consistently and decided to do something about it.

In January 2018, Cervivor re-launched a project called “Survivor Slimdown.” Survivor Slimdown is an online group aimed to support ALL CANCER survivors in their fight to live a healthy and balanced lifestyle after a cancer diagnosis. While we are a “slimdown” group, we aim to address and support all survivors and recognize the connection of mind, body, and spirit. We currently have 70 members engaged in our private online group, led by cancer survivors Patti Murillo-Casa and Holly Lawson.

Patti Murillo-Casa, Survivor Slimdown admin AND in-house fitness guru.
Holly Lawson, Survivor Slimdown admin, finishing her first post-cancer 5k.

Patti is a retired New York City police officer turned fitness guru. After her battle with cancer, she lost over 100 lbs! She is a Certified Personal Trainer, Certified Senior Fitness Specialist, Pound Pro Instructor, and Spinning Instructor just to name a few. Patti assists in the administration of our online group, ensuring information being shared is safe, accurate, and cutting edge. Holly had just completed her 4th half marathon when she was diagnosed with cervical cancer in 2016. She had extensive complications from treatment that left her inactive for two years. Holly is determined to regain her health and fitness. She and Patti pack a power punch. They love leading the Slimdown group as active participants on the constant journey of health.

Survivor Slimdown provides daily motivation with “Fit Tips” and regular challenges, to keep members engaged and motivated. The group is constantly sharing recipes and tips for living a balanced lifestyle. However, it truly is the spirit of our survivors that makes the group so dynamic. Survivors understand one another and can encourage one another in the quest for health in ways others simply cannot.

Here’s what participants are saying about Survivor Slimdown:

Survivors keeping one another motivated and challenged! They understand!

“I love that we are all in this journey together even though we may be at different levels of fitness or at different stages in our health or Survivorship, we come together in this group. We all encourage each other, laugh about our misadventures, and “celebrate our victories.” Maria Franklin

This brings motivation to me without judgement and constant nagging!” Kristine Sprigler

“The Fit Tips are my fav! All the positive posts really keep me going and inspire me to ‘pay the motivation forward’. My physical and spiritual self-feel energized.” Carol Lacey

“I like the realistic goals & suggestions, along with the consistent positive encouragement are such a breath of fresh air and help me stay on goal.” Sarah Nielson

“The daily posts, the recipe suggestions, encouragement from everyone keep me motivated.” Paulette Apostolou

Survivor Slimdown participants are staying active with everything from walking, running, personal trainers, sparing, and water aerobics!

“The positive attitudes of the members and the constant encouragement of each member to push and support the rest of the group through all obstacles, has been one of the biggest reasons I love this group.”  Scott Courville

Do you find yourself feeling stuck and unmotivated to be active and live healthfully? Do you want to be on this journey with people who get you? Would you love to have accountability, recipe sharing, daily Fit Tips, and regular challenges for yourself? If this is you, we invite you to join us. We welcome all cancer survivors, male or female-no matter what the diagnosis, to join our online group. We understand cancer survivors, we understand finding your way in Survivorship, and we understand the desire to live a healthy balanced life after cancer. Come join us in Survivor Slimdown!

Click here to join Survivor Slimdown!

Statistics retrieved from https://cancercontrol.cancer.gov/ocs/statistics/statistics.html

Cerviving with Lymphedema

Living life as a Cervivor involves tweaking one’s daily life to find a new normal that provides the best quality of life possible during and after treatment.  This involves researching options available for relief from side effects, advocating for the best medical care, networking with other Cervivors, and trying a variety of remedies to feel well. It can be exhausting physically, mentally, and financially. It does not end because many side effects are lifelong conditions such as Lymphedema.

Shawna with her compression hose, to control her lymphedema symptoms.

As an almost 13-year Cervivor of Adenocarcinoma 1B2, I have mastered the art of this “Cerviving” thing very well because I am used to it. It is just part of who I am. Every little ailment or pain does not typically trigger me or cause me to fear I am having a cancer recurrence. I know in some areas of my health I have some “special needs” and I embrace them. I always counted myself blessed to not have lymphedema. In 2005 I had 44 lymph nodes removed, a radical hysterectomy, and radiation. Recently, after a hospital stay for double kidney infection, I developed painful symptoms in my pelvis that were negatively affecting my daily life. Soon I would be making some serious lifelong changes to my daily life to manage the discomfort I was feeling. Cancer has created a voice in me that advocates for the care I deserve and researches the best options to treat my conditions. I was not finding relief after being discharged from the hospital with double kidney infection. While doctors were thinking my issues involved my immune system fighting off the kidney infection, my gut told me to push on to find a second opinion. My husband noted that my health was creating a sub-par quality of life for me daily and it was making me feel down.  I had to make many phone calls and eventually travel to a different hospital for an amazing team approach. After several specialists and tests, it was determined that this was a lymphocyst in my pelvis and that I did indeed have lymphedema. Crud! I was already managing every other side effect, and now this? Cancer is always the gift that keeps on giving.

What is Lymphedema?

Lymphedema is the swelling in the arm or leg that occurs if the flow of tissue fluid (lymph) out of the extremity is restricted somehow. Our lymph system consists of a network of vessels, like blood vessels except these carry a clear fluid called lymph. In my case, the lymph was not properly percolating through small bean-sized lymph nodes that cluster in my pelvis area. And well, it hurts A LOT. I often describe how it feels, by comparing it to a balloon sitting on my lady parts and there is a definite area inside my thigh that hurts ALL THE TIME. When I walk I can feel the pressure and it makes me limp.  My leg feels heavy and numb for hours or days at a time as if it is asleep, but it won’t wake up. Half of my lower extremities feel more swollen than the other half. The pressure pushes on my sciatic nerve and it hurts to sit and sometimes it throbs when I am not even moving. When I am having pain, an hour standing feels like three hours. I just want to put my leg up and keep it straight because sitting or bending it really isn’t much fun. The pain just sits there inside my left pelvis area and it won’t go away. I sometimes want to cut my leg off or get a spinal block, so I can’t feel it anymore. My leg sometimes feels like it is not even part of my body.

$8k Flexitouch Machine I use daily for lymphatic massage.
Hooked up to the Flexitouch.

A plan had to be developed to help me manage the pain and daily living. This involves compression garments for my left leg, a special lymph node massage machine I use daily, manual lymph node massage throughout my day, special wraps I sleep in at night, dieting to put less pressure on my groin area, doing individualized daily exercises for pelvic pain, drinking plenty of water, and avoiding hot showers/baths or extreme cold. My least favorite part is putting on my compression stocking each day. Putting them on feels as difficult as childbirth some days, but they truly help. Just this week my physical therapist, Dr. Lili Wells started a special therapy called “introital stretching” because the tissue inside my vaginal area is as stiff as a board. This is supposed to really help reduce my pain in this area after as few as six sessions. I am so grateful that my husband, Aaron is going to learn how to do some massage to help me keep up with this throughout the week. I also had my medical provider help me acquire handicap parking until (or if) my symptoms improve. Some days are better than others, but I am not going to let it slow me down.

Adjusting to life in compression wear in the summer heat!

I have been very blessed to have great insurance to help offset the expenses of dealing with lymphedema.  I had several CT Scans, an MRI, a Lymposcintigraphy where they shot dye up my feet (so very painful), and they did try to aspirate the area with a guided CT. This did not seem to help for very long and it may be repeated in the future, but also cauterized next time. I will try anything to make the pain stop. There are cutting edge procedures in Lymphedema that I am looking into.  A very small number of U.S. institutions treat lymphedema with a comprehensive multidisciplinary lymphedema service. These places are trying to change the perception that it is an untreatable, lifelong condition. Dr. Wei Chen of the University of Iowa feels that medical professionals have an obligation to treat lymphedema because they are causing it due to surgery and radiation.  I do not know if I am a candidate to be treated at one of these institutions, but it is exciting to read about “Lymphies” finding more permanent relief with new procedures. I recently made an appointment to see if this could help me in the future.

Physical Therapy with Dr. Wells.

I have always tried to boldly “Walk in my Cervivorship” because to me that is the best way to overcome any adversity and advocate after my cancer experience. There is no forgetting that I had Cervical Cancer. Some days, managing all of this makes me cry because I remember what life was like before cancer and I feel it puts limitations on me that complicate my daily life. At times, I become distracted because all I am thinking about is what I need to do to get ahead of the pain or what is the next step in my daily regimen. But then the perseverance I have within my soul rises and grabs back my joy while I prance around in my rock star compression stockings ready to take on the world.

Read Shawna’s Cervivor story here.