National Immunization Awareness Month

There is something about the start of a school year each August, that brings excitement. We go shopping for new clothes, fresh school supplies, and the perfect lunch box. It can feel like New Year’s as we look at a new academic year, with new instructors, and a clean start. August is also National Immunization Awareness Month (NIAM). As you and your family are preparing for an amazing school year, Cervivor wants to remind you to make sure the kiddos are “back to school ready” by ensuring they are current on their immunizations, including the Human Papillomavirus (HPV) Vaccine.

At Cervivor our community is committed to staying engaged in the immunization conversation year-round. We regularly share our Cervivor stories in hopes to change the narrative and stigma around HPV related cancers and the importance of the lifesaving HPV vaccination. We routinely share out on social media, as it is a quick yet powerful way to show our cervical cancer journey and to remind people in our lives that it is almost always preventable.  In honor of NIAM, we wanted to share what we’ve been up to in our fight to end HPV related cancer.

Elizabeth Holliman is a longtime Cervivor Ambassador whose oldest son was finally eligible for the HPV Vaccine this month. Elizabeth is making sure R.J. is protected: I vowed to protect my sons from the HPV strains that can cause cancer, it can be prevented by the vaccine. Here’s my R.J. getting his first round of the vaccine today. I never want my kids to go through what I did, or many others have when it’s preventable. It’s just that simple. There was no hesitation.  When you know better, you do better. 

Scott Courville is an oropharyngeal cancer survivor and an active member of our online HPV cancer support group. Scott recently had his son vaccinated and urges others to do the same: If you could prevent your child from getting certain cancers early on with a simple vaccination, why wouldn’t you?

The effort to spread truth and facts about the HPV vaccination is not just for those HPV cancer survivors with children or children eligible for vaccination. Many in our community regularly share and have been able to impact those in their network. For example, Lucy Philips is an active member of our community and will be attending Cervivor School next month in Cape Cod. She faithfully shares her journey and recently wrote to us. Lucy shares:

Kelly’s son, Noah

Having battled Cervical Cancer myself, there is absolutely no hesitation in my decision to vaccinate my children with the HPV Vaccine…. not only my daughters, but my son too! For now, my children are too young to receive the HPV Vaccine, but that doesn’t stop me from encouraging other parents to have their children vaccinated. It is amazing how many people are completely unaware of HPV and the fact that there is a vaccine which prevents the most harmful strains of HPV. I feel like it’s my responsibility to inform other parents and share with others my own personal battle with an HPV related cancer. A friend from work recently scheduled her son to have the HPV Vaccine and this is what she sent me:

“I never considered vaccinating my boys until listening to everything you went through. I wasn’t even aware that boys were at risk of HPV or HPV related cancers. If I had known, I would have vaccinated my boys sooner! My 17-year-old son just received the vaccine and my 15-year-old son will be receiving it soon. I will do anything within my power to make sure my boys do not suffer from something that is completely preventable”. – Kelly Green

Cervivor Ambassador Holly Lawson doesn’t have children. However, she frequently shares her cervical cancer journey with those in her social media network. Just last month, she shared a message from a college friend who had been impacted by following her posts: Thank you for sharing your story and updates. I thought you might like to know you have encouraged our family. My 11-year-old got the HPV vaccine because you shared how important it was. It was you who made that so clear to me about how important that was. His doctor felt it was important as well, but your story made it real to me and helped me see past the fear of that vaccine.

What testimonies to the power of sharing our stories and making a difference! The HPV Vaccination is safe, effective, and is cancer prevention. This month as you’re preparing the kiddos with new clothes, shoes, and school supplies, why not make sure they are prepared for a future that is FREE of an HPV related cancer? You can’t protect them from everything, but you can protect them from high risk strains of HPV. Act now, to protect them later.

Schedule an appointment to speak with your doctor or pediatrician today.

For further information regarding safety and recommendations, visit the Center for Disease Control HPV Vaccines: Vaccinating Your Preteen or Teen.

 

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.