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Jan and Rebecca

Two Friends – Educating Others: Jan and Rebecca’s Story

National Lymphedema Awareness Day was March 6th. Are you familiar with this side effect? There are many misunderstandings about this condition. Two years ago, after hearing from survivors and healthcare professionals about the need for more support, the Cancer Support Community GLV launched a monthly Lymphedema Support Group. Participants talk about ways they’ve worked through challenges and made accommodations to live a safe, healthy lifestyle with lymphedema. It’s a group willing to educate others while they advocate for themselves. Who better to tell you more about the positive experiences in this group than two of the original members, Rebecca Michael and Jan Wedderman.

Rebecca and Jan met at work in 1981. The diagnosis of cancer united these friends even stronger when Jan was diagnosed in 2002, and then Rebecca later in 2011. But it wasn’t only a cancer diagnosis that these women had in common – but also a later diagnosis of lymphedema that led them to become advocates for others. Here are their candid stories, shared with humor, honesty and hope:

Jan had been experiencing break-through bleeding, but kept up with uterine biopsies that reassured her everything looked okay. She was also prescribed progesterone to stop the bleeding, and continued to be watchful. Then a vaginal ultrasound determined that the uterine lining looked thicker, which she understood as an indication of a problem. Instead of an office biopsy, Jan decided on a more proactive approach and requested a D&C. “I didn’t have a good feeling about it.” The D&C revealed a polyp which was removed. Jan later received the phone call alerting her to focal cell adenocarcinoma in situ (referring to cancer in her uterus).  “My doctor kept talking, but after the word cancer, I didn’t hear anything else. I missed everything else said about recommendations and next steps.” A total hysterectomy followed, with 17 lymph nodes removed. “I was lucky that it was contained in the polyp. But I was the one who mentioned lymphedema because as a laboratory technologist, I was aware of this risk. Lymph nodes do more than just drainage,” Jan explains. “They protect against infection. I asked when I could develop lymphedema, and noticed there was a hesitation to give me any scary news. I appreciated how candid the doctor was in warning me that lymphedema could happen at any time in my life. As a patient, I didn’t see this conversation as negative, but instead one that could prepare me for the signs. I researched the do’s and don’ts post-surgery. There were things I wanted to be cautious about – like pedicures, bug bites, sunburn, and scratches. Missing lymph nodes have an impact  after surgery, since your ability to fight infections is diminished. But a diagnosis of lymphedema heightens your risks, which is why I wanted to be prepared.”

Jan’s fear came to surface when four and a half years after her surgery, her foot started swelling. Initially, she attributed it to extensive walking during a cruise vacation at the time. But in the back of her mind, she knew she was at high risk. It didn’t take long for the rest of her leg to swell. Her schedule became filled with physical therapy appointments and she wore special lymphedema stockings. She describes this experience with humor as well as frustration. “They’re tight when you first put them on. I started with one leg. Even when I put the glue on at the top of my leg, it would roll down when I worked my 10-15 hour shifts!” That prompted Jan to try lymphedema pantyhose which require specific measuring. “Those turned out to be more of a catastrophe! If you think regular pantyhose are a pain, these don’t hold a candle to what you buy in a store. This became a joke – my husband and I would laugh hysterically putting them on. You must do this first thing in the morning before the swelling starts. I’d roll around – get one side on and then work on the other leg. My husband isn’t the most patient character, but we’d get one foot in, and get it all the way up the leg without crinkles. For the next leg, we’d get another contraption and put the hose over it to insert my leg. That was another joke, because it doesn’t stretch far enough to get your other leg into the apparatus. It’s like putting a child into a snowsuit and then they have to pee. I would have this apparatus on, and then I’d say, ‘uh oh’, and my husband would say, ‘Well I’m done!’, and that was that!”

There were times for Jan when lymph massage followed by wrapping would help, even though she describes feeling like a mummy. “The professionals would wrap quite perfectly. But the next day, the wrap would get caught where the knee is supposed to bend. I’d notice my foot turning blue!” Finally, the sequential lymphedema pump became the easier boot to use. Jan would use it at night, with her leg higher than her heart as it went to work massaging in the proper way. Jan expressed appreciation for this piece of equipment, “I took it everywhere – to the store, on vacation, etc. This caused chaos at the airport screening sites because security whisked me to the side while my husband was yelling, ‘She has to have that pump!’ The security swipe revealed that it was some type of metal which required more scrutiny. They frisked me! Then supervisors had to check it out since the guard never saw anything like it before. After 20 minutes, I got the clearance to proceed.” But Jan wasn’t out of the woods yet!  “At the flight gate, the attendant argued that I couldn’t take the gym bag on the plane. I insisted that it could not be checked, since it was too expensive and I couldn’t be without it. It was my inseparable friend that traveled everywhere with me.”

Nine years later, it was Rebecca’s turn to be in the ‘patient’ seat. Rebecca was vigilant about getting her annual mammogram. But that year was different. A follow-up phone call she received to return for further testing with an ultrasound revealed concerns. “I watched it on the screen. I could see the tumor. Once the technician was done, I put my hand on my breast and could feel it, though I didn’t notice it before.” Thus began the process of a cancer diagnosis and treatment. “My surgeon was very compassionate, and told me I was the most unusual patient ever, because I was so calm. It really didn’t bother me. At the time, I worked in a nursing home. When I went back to work, I told everyone on staff about it and encouraged them to get a regular mammogram.” Rebecca doesn’t describe herself as a worrier, but rather she takes things as they come. But when the MRI showed two more shadows, the surgeon explained that this required more lymph nodes to be removed than expected. Rebecca wanted to know everything. “I threw out a guess about how many. 90%? When he said yes, I was shocked! Knowing the worst case scenario, that finally scared me – not that I was expecting everything to go wrong, but I was trying to be prepared.” This was especially pertinent for Rebecca, having seen her close friend and coworker go through problems with lymphedema and infections several years prior. Never having surgery before, she recalls being a nervous wreck. “The morning of my surgery, I was bombarded with a ton of information – much of it went in one ear and out the other. Timing for me was off because I couldn’t concentrate.”

Rebecca lost 11 pounds from the stress. Two weeks after surgery, she finally had time to go through the book that was given to her at the hospital, which covered post-op signs and symptoms. One concern she read about started to become apparent. She recalled that while still in the hospital, she had developed a strange feeling from her armpit and to her wrist. At first, she didn’t think anything of it. But after another week, she noticed that she couldn’t touch her arm without pain, and developed a constant ache in her hand and wrist. Two and a half months later while playing baseball outside with her grandson, she became overwhelmingly hot. Once inside, she noticed that one arm was swollen. She kept asking questions until someone recommended she call the surgeon, who identified that she was developing lymphedema. “My issue with this side effect is that it’s in my left arm, and I’m left-handed. It’s frustrating not being able to do things that I used to be able to do.” Rebecca describes how she joined the breast support group for emotional support. She acknowledged that the meetings helped, but she realized she needed something more. Despite feeling supported by other survivors and staff, she still felt like she couldn’t totally connect with anyone. “I hit another brick wall and couldn’t get past it. People close to me would say, ‘you should be over this already.’ I felt alone because no one understood the loss I experienced by being unable to do my typical things. As soon as I would try a project, my arm would swell.  Emotionally, I couldn’t figure out why I was having issues – I thought there was something mentally wrong with me. Then it hit me – none of the women I associated with in the group had lymphedema. So, I was still alone in some aspects. When I mentioned this feeling, someone showed me the Cancer Support Community calendar. I called that January to register early for a program that started in March! I could hardly wait. The day before the first meeting, someone called as a reminder and I said, ‘I will be there – I’ve been waiting for months.’ This was the best thing I’d ever done.”

Jan agreed. “It was so endearing to me to learn that there was a specific group offered.” She had been feeling just as alone and just as misunderstood. “There’s a preconceived idea out there that when you have lymphedema you appear being lazy because you can’t do the things you are used to, such as dancing. At a wedding, a guy next to me insisted that I get up and dance, and he looked at me like I had five heads when I tried to explain lymphedema. My leg was already swollen just from attending the wedding. The guy was surprised, saying that he’d never let anything restrict his hobbies or cause him to be less active. This made me feel so bad. This side effect can take away part of your identity.

Rebecca added that people would ask ‘can’t you just take a water pill?’ She was constantly explaining that this problem was different. “Once fortunate enough to complete treatment, you can move forward with your life cancer-free. But lymphedema creates a lifelong struggle. Lymph nodes never grow back. You are always concerned about your surgical limb. Other parts of your body can be affected.”

Jan also shares her knowledge and experiences in the group as a way to hopefully prevent some serious consequences in others. She had several life threatening illnesses five years after her surgery. After a fall at home, she developed a strep infection. Jan recalled feeling fine on Saturday, but by Sunday felt like she had the flu. By Monday her leg was scarlet red, “Sepsis moves quick.” She reinforces that, “A group like this will help people become serious about taking precautions, but have the support around them so that they’re not too overwhelmed.” Rebecca added, “An ounce of prevention is worth a pound of cure.”

Jan and Rebecca shared that the support group has been life-changing. Jan says, “We talk about what’s out there and help each other. It’s so nice to know there are other people facing this together. One surprising thing they realized from the group was that very few knew about lymphedema before they developed it. “Many of them weren’t prepared,” says Rebecca. The second surprise was the lack of awareness. Both women found themselves educating others – not only in the group but also in waiting rooms and infusion centers. Rebecca’s experiences came into light again when she intervened with a close friend who was diagnosed with breast cancer. She let the friend borrow her ‘big book’ that explains signs and symptoms. But she says, “I later found out that my friend wasn’t as prepared as I had hoped. This launched me into advocacy mode.” Rebecca then met with several hospital administrators to help promote changes to increase awareness. “Now I’m reassured. There are new standard processes.” She was relieved to hear that prior to surgery, patients have their surgical limb measured, learn about signs to look for if developing lymphedema, and review the role of lymph nodes and the lymphatic system. The follow-up care helps monitor changes as well. Rebecca adds, “This may be a new procedure for some patients. It’s important for patients to be aware that they should see a lymphedema therapist prior to surgery to get a baseline and learn how to care for the limb. The only way to do that is to be proactive and ask your doctor for a script prior to surgery, in case it’s not an automatic referral. It’s an important gift you can give to yourself.”

Both want to spread the word to others. They also are hoping to see increased communication within hospital systems. They agree, “This isn’t a reflection of the doctor’s abilities. This isn’t a reflection of poor care or a mistake during surgery. This is a condition that many cancer survivors must be aware of.” Rebecca was surprised to find out how many other lymphedema survivors there are. At one of her physical therapy appointments, she noticed pink dots scattered on the therapist’s calendar.  The therapist explained that the dots represented all of her lymphedema patients who were scheduled. “I couldn’t believe there were so many,” Rebecca says, and wondering how she could help encourage more to attend the monthly support group which she finds to be so helpful. She recommends it often. “When I saw my surgeon that following year, I told him to refer to the group. Since the group began, I haven’t missed a meeting – I look forward to it!”

Rebecca explains, “We’re not trying to scare people, we just want to prevent people from becoming complacent. I know the worst case scenario. When I hear people taking risks, it makes me cringe – gardening without gloves, having blood drawn or blood pressure taken from the surgical limb, ignoring sunburns, carrying heavy weight on the surgical arm, etc.” Jan reinforces this sentiment, adding, “By warning others, we are put in the position of being the doom and gloom naysayers. But we know how important these messages are, so we’ll keep spreading the word!”

Note from the Program Director: We are fortunate to have resources in our local area that focus on lymphedema management. Check our calendar for monthly Lymphedema Support Group dates, with alternating day and evening meeting times. This group is open to anyone with a diagnosis of lymphedema – men and women of all types of cancer.

Finally, one local healthcare professional wants cancer survivors to know: “Depending on the type of cancer treatment you have had, you may be at risk for lymphedema. There are different risk factors for lymphedema including age, weight, the number of lymph nodes removed, whether or not you have had radiation and whether or not you have had chemotherapy. Research in the last few years has shown that if caught early you may be able to control lymphedema and possibly even reverse it. It is important to continue to do the things that are important to you as long as you follow ‘risk reduction’ guidelines.” ~ Nancy Kinzli, MS, OTR/L, CLT-LANA from Lehigh Valley Health Network. Please call your treatment team to inquire about lymphedema services, risk reduction guidelines, and safe practices. Be empowered in your care.