Maggie Cameron

Scanxiety

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What is scanxiety?

Scanxiety describes the apprehension felt by people with cancer as they wait for their next scan. It’s a form of anticipatory anxiety. Scans are like emotional roulette. You’re trying really hard not to worry about the unknown, but your body has other plans.

Recognizing the Signs of Scanxiety

Symptoms of scanxiety vary from person to person. Here are a few things you might be experiencing.

  • increased heart rate
  • trouble sleeping
  • tension and irritability
  • stomach pain/nausea/appetite loss
  • sweating
  • difficulty concentrating
  • trouble regulating emotions and/or mood
  • emotional numbness
  • jumpiness or restlessness
  • racing thoughts and panic

Symptoms range from mild to intense and can be invasive to your daily life. You just don’t feel like yourself and normal activities become cumbersome and trying. It becomes hard to make decisions until after your scans have passed.

Life feels like it’s on hold.

What can you do to manage scanxiety?

Most importantly, know that your feelings are valid, and you are not alone. These feelings are very typical for people dealing with a difficult diagnosis. To cope with your scanxiety, you’ll need to recognize your symptoms, and make a plan.

Make note of the symptoms that you typically feel and the go-to coping strategies that work for you. Keep your plan handy for when scanxiety creeps in.

Three Strategies for Coping with Scanxiety

  1. Mindfulness is about accepting what is, accepting that unpleasant feelings are happening, and riding it out with as little judgment of whether those feelings are right or wrong, or whether or not you should be feeling them. They are happening. Period.
  2. Contact Your Support People. Reach out to family and friends that ground you and provide steady, calm advice in times of worry. Some patients may prefer support groups or professional counselors.
  3. Relax with Intention. Breathwork, meditation, massage, yoga or light exercise, journaling, reading, listening to a book, or focusing on a hobby are all ways to use relaxation to cope with scanxiety.

While the symptoms and coping techniques vary from person to person, patients with a serious diagnosis almost inevitably feel anxiety surrounding their condition. It’s important to plan for when this happens. We can’t prevent all scanxiety, but we can mindfully confront it. A little plan can help in a big way!

Melissa McPherson

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What do you want others to know about EHE?

“I want people to know that EHE can be very frustrating. I say this because EHE is so different for each of us. What works for one person, may not work for the next. It also can cause lots of anxiety for us as we wait and watch to see what it decides to do–will it grow or will it lay low for several years and then become aggressive? I believe that is why the motto of Just Live is so important for each of us. We have to press on and live our lives without allowing EHE rob us of our Joy! When you have no control over the circumstances, you simply must Live with a grateful heart for what today brings!”

~ Melissa McPherson

Kathy Field

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Hello, my name is Kathy, and I live near Kalamazoo, Michigan. I have taught migrant and bilingual students for more than 35 years.

My EHE was discovered in the spring of 2018, in both lungs. I cried at first, scared and not sure what to expect, but I decided to be as emotionally strong as I could for family and friends.

I am married with two sons, two stepsons, their partners and spouses, along with four beautiful grandchildren. I also enjoy spending time with my brother, his wife, my niece and her husband, and their young daughter. So many reasons to remain healthy!

I love to travel within the USA and abroad, as well as hike, bike, and golf.  I’m trying to figure out pickle ball and also enjoy sewing and knitting as quiet pastimes.

My initial oncologist had no experience with EHE, and said that if he ever had to have cancer, he would want my type. That put me at a false relief, I believe, because I have since learned of all the twists and turns this type of cancer often takes. I don’t want others to feel sorry for me, but EHE can be fatal and more research is needed to find a cure.

To those who can, please donate to The EHE Foundation.

John Lamb

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My name is John Wesley Lamb. I am 50 years old from rural South Arkansas. I say I am just an ordinary guy. I am married to my wonderful wife, Angelia, and have three children, Juliann (Married to Logan), Caleb (engaged to Rachael) & Joshua. We have two grandchildren, Elizabeth & Layton.  I love being Poppi to my grandchildren.

I work full time (25 years) as an environmental inspector. I have also spent 20 years as a law enforcement office, mostly as a deputy with the Bradley County Sheriff’s Office.  I am blessed to be a member of our local church.  I love most any outdoor activity, canoeing, fishing, hunting, camping, and the beach, just to name a few.

In April 2017, after a month of strange symptoms, it was discovered I have multiple tumors in my liver the biggest is almost the size of my fist. A few days later, I was seeing an oncologist at one of Arkansas’ leading cancer institutes. After another month of tests, I heard the words Epithelioid Hemangioendothelioma (EHE).  My oncologist said that it was so rare nobody there had ever heard of it and I needed to go someplace else.

I was scared, confused and felt alone. Where could I go? What is a sarcoma?  What is EHE? How could this happen to me? How could I end up with EHE?

All my friends, family and church family have all been so supportive of me. Those who really know me can tell when I feel bad; they tell me they can see it in my eyes. Others (even health care workers) can’t believe how good I look or why I am not taking some chemotherapy agents. So they are confused is because I look so ordinary.

One of the most challenging things with EHE is that doctors don’t know what to do. What works on one patient may not work on another and ultimately there is no current cure.  I found that in EHE research, the patients, families, friends and ordinary people provide most money for research out of our pockets. The EHE Foundation engages all of the patients comparing treatments from individuals. So not only am I a patient, I am a fundraiser and researcher all rolled into one. I also discovered more family through The EHE Foundation from all over of the globe and found “alone we are rare, but together we are strong

The EHE Foundation helps patients connect with doctors who have the most knowledge. The EHE Foundation provided me the information and contacts for the nanoknife liver procedures I had at Miami this year.

Past research funded by The EHE Foundation has found the underlying cause of most EHE. The EHE Foundation continues to fight for more research, pushing forward to find a cure. Please take a moment to consider giving to the EHE Foundation.  It is donations from our family, friends and ordinary folks like you that add up. It is one dollar at a time that makes a world of difference to people like me.

Keren Stern

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I, Keren Stern, am a wife and mother of two and I owe my life to The EHE Foundation. I live in Las Vegas, Nevada. I enjoy spending time with my family, traveling, and socializing with our friends in the autism community. Raising a child on the autism spectrum requires me to work from home, and being a bookkeeper allows me the flexibility I need to navigate between kids, house, husband, and work seamlessly.

I was diagnosed with EHE on Feb 28, 2017. Thinking about having cancer, needing surgery, and what that meant was beyond scary. My EHE has no outward physical attributes, so people don’t know I have it. For the most part, I wish more doctors knew EHE existed or at least heard of it before I walked in for a consultation.

Living in Las Vegas, the biggest challenge for me is the lack of local medical facilities and the need to travel across the country for treatment. Traveling is exhausting, expensive, and requires jumping through hoops with insurance and the out of network benefits. There is very little known about EHE which means there is no “gold standard” or proven to work protocol. We are all just sitting ducks and guinea pigs to every treatment modality.

I owe my life to The EHE Foundation because they gave me answers doctors couldn’t. I was able to find doctors through The EHE Foundation who have seen other patients with EHE. These doctors had knowledge of this cancer and its behavior. This was priceless in a situation where I would otherwise have ended up down the wrong treatment path. Unexperienced doctors were leading me down an extremely invasive and life altering course of treatment. The EHE Foundation is a support system like no other, filled with caring people all personally invested in each member’s well-being. A win for one is a win for all!

Our Foundation is all we have to support research for this extremely rare sarcoma. Your generosity helps provide answers, connections, hope, and direction to those suffering from EHE. Your donation can be the reason our researchers find a cure for EHE.

2nd Annual EHE Virtual 5K Run/Walk

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2nd Annual EHE VIrtual 5K Run/WalkRegistration for this event is over, but if you are interested in purchasing EHE/Just Live merchandise, please contact us at [email protected]

For up-to-date information about this event, visit our Facebook event page: https://www.facebook.com/events/236969163428782 .

We encourage you to upload pictures wearing your race shirt. The pictures can be taken before, during, or after the 5K. Your pictures will be displayed on the event Facebook page, on our website, and used for future events. Don’t forget to tag yourself in your photos!

This run/walk is an all ages and abilities event for EHE. EHE is short for Epithelioid Hemangioendothelioma, an extremely rare and often deadly vascular sarcoma.  EHE is an extremely unpredictable cancer without a cure or proven treatment.

This event is “virtual”, which means it can be done anywhere you are. You can complete the 3.1 miles by running, walking, crawling, roller-skating or any other form of exercise.  You can complete it alone or with others who register.  

This is a global event to help spread awareness and raise funds for EHE research.