Healthy Living

Living as a Hodgkin Lymphoma Survivor: Creating a New Normal

Living as a Hodgkin Lymphoma Survivor: Creating a New Normal

Photo: Leukemia & Lymphoma Society

No one can ever truly be prepared for what it is like to live with cancer. Even the strongest survivors face setbacks, and some of the fiercest warriors share their stories of how they find their "new normals."

Kimberly's story

When she was only 25, just five days before her wedding, Kimberly felt a lump that was protruding from her neck. She was with friends and family at a birthday party, but she was immediately alarmed and headed straight to see her stepfather - a doctor that she trusted to give her advice on what she had uncovered. She wondered whether she was being dramatic or freaking out about nothing, but it turned out that making that visit quite possibly saved her life.

Her stepfather immediately knew that the lump, and its positioning, was not a positive thing to have - especially at her age. However, he knew how excited she was for her wedding, and how much planning had gone into it, so he decided it was best not to alarm her too much so close to the date. He gave her antibiotics and was able to ease her mind about the situation. However, when the day came, her arm was entirely numb to the point that she couldn't even hold her flowers as she prepared to walk down the aisle. To an outsider, the wedding was perfect. Over 300 guests came to support them, the reception was stunning, and everything went smoothly. However, Kimberly was overwhelmed with pain the whole time, and could sense something was wrong.

She enjoyed her honeymoon, but as soon as she returned, she went to an internal medicine doctor. There, she was told to visit the hospital immediately.

At the hospital they took scans, and a radiologist directed her to a surgeon who informed her that she had lymphoma. A biopsy was done to learn more about her specific case, but they could already tell her that she would either need chemotherapy, radiation, or both. She couldn't believe the news, and immediately dreaded the thought of telling her new husband what had happened. She knew they had just promised "in sickness and in health," but no one expects to face sickness so quickly.

She told her other family members and close friends of the news, and asked for advice on how she could possibly tell her husband. She promised them that she would be alright, but she couldn't help but wonder if it was true.

Over the next few days, she waited for her biopsy results before finally being told that she had advanced stage Hodgkin lymphoma, stage IIB.

Rounds of chemotherapy

For treatment, she had to have twelve rounds of eight-hour chemotherapy treatments, specifically ABV.

She was able to get through it with the massive amounts of love she received from those around her, through her side effects and everything. She explains, "heroic nurses and medical staff stood by my side. So did brave and often emotionally drained caretakers - my parents, sisters, extended family, friends, community members, and even strangers I had never met." Her friends stood by her by organizing dinners, and sending cards and care packages. Those who lived far would even fly all the way to visit her in the hospital as she endured her chemotherapy treatments, just to hold her hand.

At one point, she became a part of the Light the Night walk in Tampa, Florida, and was inspired by those who joined her team - over 100 people who loved her. In 2005, she was even named as Fundraiser of the Year, and received love and support that she believes contributed to the success of her recovery.

When she finally completed her treatment, family and friends were there to lift her up even further. Not only that, but they would celebrate the anniversary with her every year to come to remind her of how far she has come.

It takes strength

She wants to remind everyone around her that making it through a cancer treatment, no matter what kind, is something extremely admirable.

However, she wants it to be clear that the battle is never over, and living as a survivor comes with its own difficulties. Some don't expect them, and look forward to being done with treatment, but it's important to be aware of them in this next phase.

She explains, "mentally, I was just beginning to process all that had happened. I attended funerals of other patients who I was treated alongside. While families were mourning the loss of their loved ones and I stood beside them to pay my respects, I felt a strange feeling, which I can only describe as guilty and ashamed."

Check-up visits are also difficult, as you never know what new information will be offered - and whether it will be positive or negative. Other health issues will arise, but sometimes it is hard to take them seriously as everything seems to pale in comparison to cancer. In fact, sometimes it becomes tempting to not "waste a doctor's time" with something that isn't more serious.

Surviving vs. living

After ending treatment, many find themselves "surviving," but not truly living. A certain type of fear follows them constantly. Kim's family and friends were able to point out to her that she had forgotten what it felt like to be normal, and were more than happy to guide her back to that state at her own pace. Unfortunately, others don't always have such thoughtful comparisons, and this search for normalcy becomes solely an endeavor of one's own, which makes It all the more difficult.

Part of Kim's difficulty, one that many face, is that it is nearly impossible to fit back into the old life, the one before cancer. This is because when a person changes, they will be absolutely incapable of fitting into the same role seamlessly. When you've altered your mindset, which is inevitable when going through such a huge life event, you see things differently. This is why instead of trying to fit back into the old normal, one has to create a new normal.

For Kim, she felt as if she couldn't begin her new life until she could be confident that the cancer was truly gone. She needed her scans completed, and doctors' confirmation that the cancer was not likely to return. By holding out for this information, Kim spent almost six years of her life simply waiting for certainty.

Now, Kim has been cancer-free for ten years, and lives in gratitude for that fact. She finds solace in the fact that researchers are putting so much effort into finding cures for the disease that plagued her and so many others. She finds strength in being able to raise funds to support these efforts, and feels as if it is her way of giving back, given how fortunate she had been - especially being that some of her close friends were not quite as lucky. A sense of survivor's guilt will never truly leave, but fighting for others helps tremendously.

Kim explains the progress she has made: "Now that I have embraced being a survivor, I know that every day is a new beginning."