When it rains, it pours.
The old adage isn’t limited to the weather patterns of the soggy Pacific Northwest in the middle of winter; it can also be a descriptor for a series of events, one right after another, that leaves a person feeling as if the rain will figuratively not let up.
For Susan Brock, the rain began in 2018 when she was diagnosed with breast cancer.
As an OHSU employee for 20-plus years, OHSU was Susan’s first choice for treatment.
“After I was initially diagnosed in 2018, I was still working full time,” said Susan. “I went through treatment, finished up at the end of 2018, and I had a good year in 2019 while on some follow-up anti-estrogen medication that I was expected to take for at least five years.”
Unfortunately, Susan was diagnosed in October of 2020 with a recurrence of breast cancer and was facing another round of chemotherapy and additional surgeries.
“Within the span of about two years, I had a first bilateral diagnosis of breast cancer, surgery, radiation, and chemo,” Susan describes. “And then about a year and a half later, I had a recurrence. I had to go through treatment again with surgery and chemo.”
A steadying hand throughout her cancer journey was the support she felt from her care team, including Dr. Zahi Mitri, a medical oncologist at OHSU who specializes in treating patients with breast cancer.
“I have spent a lot of time in infusion, but I have had great support. Dr. Mitri is my oncologist, and he’s the best,” said Susan. “I felt so fortunate in 2018 to first start working with him.”
Two-plus years later, the rains appeared to be letting up. By spring 2021, Susan had completed her breast cancer treatment.
LEARNING ABOUT LYMPHEDEMA
While one issue was being managed, another was on the horizon. During her first surgery, Susan had a lumpectomy and axillary lymph node dissection to remove lymph nodes, some of them deemed to be cancerous, resulting in an increased risk for lymphedema.
Lymph nodes are small structures that circulate and filter fluid as part of the immune system. They may be removed in cancer surgery, as was the case for Susan, or damaged by radiation therapy or certain types of chemotherapy drugs. This can lead to fluid buildup in the limbs, causing swelling, pain, and a heaviness in the affected arm or leg.
Lymphedema occurs when fluid does not drain properly in the body through lymph vessels and can cause discomfort and swelling, most often of the arm or leg. The limb feels hard, swollen, and even heavy in certain circumstances. The presence of lymphedema puts patients additionally at risk for infection.
Patients are at their highest risk within three years of surgery. However, lymphedema can occur at any point after cancer treatment.
Initially, Susan didn’t think much would come from the lymph node removal, or what lymphedema was. But she quickly became aware of the continuous maintenance.
“I had really no experience with it, no clue,” Susan explained. “I thought it was one of those things I’ll have to deal with, but over time you realize it does impact your daily life. I started wearing a compression sleeve, started acupuncture and physical therapy, and tried other methods as well.”
Part of Susan’s new routine involved working with Sarah Gang, an occupational therapist who specializes in lymphatic diseases such as lymphedema.
“This is an exciting time to be a lymphedema therapist,” Sarah says. “Within the last year, the prevalence and pathophysiology of lymphedema has now piqued the interest of the National Institute of Health resulting in a historical study to map the cells that cause the onset of lymphedema.”
Along with performing lymphatic massages to target specific areas on the arm and showing at-home methods of care, such as wearing compressions sleeves, Susan credits Sarah for educating her on lymphedema.
“It’s very helpful to have a therapist because she can handle your arm, muscles, and everything to give you the proper lymphatic massage that you can’t really do on yourself,” Susan explained.
“Since my lymphedema in my right arm, my dominant arm, it’s awkward having to do everything left-handed, even putting on my sleeve. To have a person like Sarah, who’s trained specifically in lymphatic diseases, has been wonderful. She really knows what to look for.”
LIVING WITH LYMPHEDEMA
After the recurrence of the breast cancer, Susan decided it was time for a more aggressive approach to treating her lymphedema, and, with guidance from Sarah, she was made aware of a lymphatic bypass surgery available at OHSU.
In November 2021, Susan went ahead with the surgery which was performed by Dr. Allison Nauta, a trained plastic and reconstructive surgeon who specializes in lymphedema.
Susan’s lymphatic bypass surgery was a resounding success and greatly improved her quality of life and overall wellbeing.
“It’s been amazing,” says Susan after the surgery.
She’s quick to note that “you don’t ever totally get rid of the lymphedema,” but her measurements are currently in the non-existing stage the last time she visited Sarah for therapy.
According to Sarah, the lymphedema measurements are tracked by the use of a SOZO® bioimpedance spectroscopy (BIS) machine. The machine, which OHSU received a grant for, helps detect subclinical lymphedema and initiate early treatment.
“It has advanced our ability to perform Breast Cancer Related Lymphedema (BCRL) surveillance,” Sarah adds.
What’s been working?
Susan says, “I’m getting good drainage, and I make a conscious effort to use that arm because I think it helps. I’m also still wearing my compression garment.”
While the lymphedema isn’t completely absent from Susan’s day-to-day life, she’s still grateful for the surgery and the positive impact it has had on her.
“It’s still there,” Susan says. “I still have to deal with it, but if I had not had the surgery, I would definitely be feeling it more every day. The actual feeling of the lymphedema has alleviated quite a bit, and I don’t have the feeling of swelling and fullness, and achiness in the arm. And I feel like a lot of that is the progression from the result of the surgery.”
One thing is certain: Susan’s progress was not instantaneous.
“It didn’t happen overnight,” she said. “It’s been a few months since I had my surgery to get me to this point of managing the lymphedema … and I’m really optimistic moving forward.”
Although Susan is thankful for her current health and can envision a future where rain clouds aren’t consistently hovering above her, the side effects of chemotherapy, multiple surgeries, and lymphedema don’t magically disappear.
“In the cancer world, they always talk about your new normal, and I’ve never been fond of that term,” Susan explains.
“I was thinking the other day about long COVID and how that is discussed, but I feel like we need to be talking about long cancer. People now understand what long COVID is, but if you’ve been a cancer sufferer and you’ve gone through treatment, no matter the results, you still have long cancer.”
The physical toll a cancer journey takes on patients can be relentless and unforgiving; Susan’s experience has been no different. She has been put through the wringer and is still constantly managing the long-term effects.
“We (cancer patients) go into our treatment thinking, alright, I’ll have chemo and then I’ll be okay,” Susan says.
“But we don’t think about the long-term effects of the surgeries. My lymphatic system got interrupted and I’m dealing with long-term chemo effects, too. I’m suffering from neuropathy, my hair hasn’t totally grown back, my fingernails turned black, and there’s overall muscle ache and fatigue.”
Susan describes her fatigue as a bi-product of the treatment aspect of cancer that eventually leads to affecting her mental state of mind.
“Am I depressed or do I just have fatigue? And then you have to sort out what’s the source of a lot of this and it goes back to your actual disease,” she explained.
Some days are more challenging than others, and Susan credits her mental approach to staying as even keel as possible.
“Sometimes I have to slog through each day just to be in a place mentally where I can tell myself ‘This is all going to get better,’ feeling like ‘I’ll get past this,’” she said.
CANCER AND COVID
In March 2020, everyone’s world turned upside down. To say the COVID-19 pandemic was a disruption to our everyday lives would be an understatement. According to the Centers for Disease Control and Prevention, there have been over 79 million total cases, which have resulted in over 970,000 deaths as of March 25, 2022.
Prior to the pandemic, Susan was preparing for life after employment. Her 20-year chapter at OHSU was coming to a close, while another chapter just beginning to take form.
Everything seemed sunny in Susan’s world.
“I had just completed my first go-round with cancer treatment, and I was feeling really good,” she says.
In the bat of an eye, nothing was the same.
“I was still working full-time when the pandemic hit and everyone were told to work from home in order to stay safe,” she recalled.
The end of March rolled around and all Oregonians were in the midst of staying home to save lives.
“I had worked here all these years and one day I was logging off for the very last time, like ‘bye-bye,’” Susan said. “It all felt very unceremonious. I didn’t get to see any of my co-workers in person, all the lunches we prepared for my retirement party never happened. It was definitely a bummer.”
The recurrence of the breast cancer that October was made even more challenging due to the continued uncertainty of the COVID-19 pandemic, which created a sense of isolation for Susan in addition to receiving treatment.
“I live alone, it was winter, raining sideways, and I was stuck inside,” she says. “At that point, I tell you, it all becomes a blur.”
How did Susan navigate another cancer treatment regimen during a global pandemic?
“I wanted to make sure I could accomplish three things every day,” she said. “One of those three things was even getting dressed and taking a shower. The goals were small because every day I was so fatigued from the blood transfusion … the chemo was really beating me down to a point where I became anemic.”
Susan didn’t want to push herself too far but knew finding a reason to get up every day and accomplishing something would do wonders for her spirit.
“I just thought if I do three things, that’s a really great day,” she said.
It’s now March of 2022. Two years post-retirement and the clouds are starting to part for Susan. She’ll always have what she describes as “long cancer” and her world will forever be impacted by COVID-19.
As a cancer patient, Susan’s immune system is compromised, meaning she’ll continue to have to adapt to everyday life. Whether that is utilizing a grocery delivery service or picking up some hobbies better suited for the sunshine.
“When the weather’s nice, I garden a lot,” Susan says. “I love being outside, listening, and watching the birds. I’m lucky I live in a house where I have a garden to tend to. And I also have a cat, I have a pet. It’s amazing what having the responsibility every day of getting up and feeding your cat, even cleaning the cat litter … That gives you a purpose every day, too.”
There’s something about the companionship of a pet that creates a very calming, soothing presence that made the rainiest of days feel bright again.
“Especially if you’ve got a lap cat,” Susan adds.