At age 32, I was diagnosed with HLH (hemophagocytic lymphohistiocytosis) and stage IV Non-Hodgkin’s lymphoma (histiocyte rich diffuse large B-cell in my liver, spleen, and lymph nodes). Prior to this, I was very active, a vegan, a marathoner, full of energy, and a pharmacist. I had a passion for world travel, animal rescue, and running.
This is not what I had imagined
life after cancer would be like.
During the months before my difficult diagnoses, I was deteriorating and becoming more ill. It seemed like I was always at the doctor, having blood drawn, or getting another biopsy. I was struggling with fevers up to 106 on a daily basis, fatigue, nausea, among other debilitating symptoms. Finally after almost six months of misdiagnosis and trying to figure out what was wrong, I had my spleen removed and "hooray" found the cancer.
Throughout this process and the four months of chemo after, I was constantly being checked in on. People were cheering me on, sending cards, flowers, hats, and care packages.
I was never one that liked being the center of attention, but I needed these gestures of love and support. Although I may have been tired of people telling me
how good I looked (when I felt awful) or how strong I was (when I felt so weak), it was nice to know people were thinking of me and cared. People came to visit me in the hospital and frequently called to check on me. There were very scary moments-- from having a disease (HLH) that is typically fatal within weeks to months, not knowing if we would figure out what was causing it, not being able to sit up in bed, not knowing if I would be stable enough to survive surgery, or if my diseased liver would be able to handle the strong chemo. Once things started looking better- and I was cleared to go home to continue treatment in Alaska, it felt like I could finally breathe.
But I never imagined life with cancer would be so tough. I was constantly fatigued, nauseous, lost my taste buds and appetite, lost my hair-- I didn't feel like myself at all. I wasn't able to do anything I enjoyed and spent hours in bed and on the couch. By this time, some people distanced themselves,
and I no longer felt the constant support. I understood though; people have their own lives and problems and I was doing "better". Cancer changed me, my priorities, and relationships. I am a lot closer with some friends and family; and more distant with others.
Then, when I had my last chemotherapy in December 2016, I moved onto my life after cancer. In my mind, I thought I would just bounce right back to the old me-- my life, work, hobbies, but that is just not the case. The reality is filled with anxiety and fear about "when" or "if" the cancer will come back
. I love to travel, but now have to worry about making plans more than a few months out. Places I wanted to go before cancer are now "off limits". Anytime I get a stuffy nose, achy body, or heaven forbid a fever, my mind goes to "the cancer must be back". Scanxiety
and PTSD are real. Although I try to stay positive and try to appreciate each moment, it's hard not to let your mind go to those scary thoughts. This was very real when I had a questionable PET scan in March, and I was told the cancer had likely returned. Fortunately this was not the case, but the weeks that came a after that moment (traveling back to Mayo for further evaluation, preparing for more treatment, facing the unknown), were a whirlwind of stress and emotions.
Cancer changes you. I am not the same person I was before I was diagnosed; not physically or emotionally. Things I liked and thought were important have changed. The relationships with people around me, friends and family, have changed.
There is a constant struggle between staying active and over-doing it. When I feel good, I want to go all out- exercise, clean, make dinner...only to crash and not be able to get out of bed for a day or two. I have to learn to take it easy, take time to rest, and not over-do it. This is hard for me, but I am doing my best! It's hard dealing with dizziness and fatigue among other symptoms that just seem to linger on. Learning to act like an "old" person when getting up to avoid feeling super dizzy or passing out. Feeling like I have run an ultra marathon before lunchtime, dealing with constant fatigue; finding out it's only 6pm when I'm hoping it is time for bed. The emotional and physical tolls after cancer are draining
And then there are the life events that still happen, regardless of cancer, such as the passing of my mom (Barb Powell) who was by my side throughout my life and illness. She passed away suddenly on May 27, 2017. She was with me for my surgeries, tests, and biopsies. When I ended up at Mayo Clinic for months, thinking my time was limited, fighting for my life, she was right there by my side- and was so strong for me after being diagnosed with lymphoma. When I was finally able to travel back to Alaska she got me through the airport when I could barely walk, and stayed with me in Anchorage through some chemo treatments until I was able to get around on my own. We spent a lot of time together especially during this past year. She was so happy for the good news from my clear PET scan, just days before her unexpected passing.
But things aren't all bad, life after cancer has given me time to think about what is important to me. I have been fortunate to have a loving and supportive husband (Eric) who understands me and encourages taking my time to heal. Caregivers like him deserve so much respect
; they are going through cancer and need support too- but not many people ask how they are doing or coping. They may not be physically affected by cancer but it does drain them to feel so helpless when the one they love the most is suffering.
Going through such difficult times makes even the small accomplishments more rewarding. There are things I aspire to do with my career in order to help people. One of my fears is that I am not ready, not strong enough... but only time will tell. All I can do is try! I recently started volunteering for a very important cause- Be The Match, where we register potential bone marrow and stem cell donors for people with cancer and other conditions in which a transplant is their only chance of survival. How amazing is that?… you could CURE someone’s cancer- who wouldn’t want to do that? I also started raising funds for the Leukemia & Lymphoma Society as a member of Team in Training. I first participated with Team in Training in 2010 while training for my first marathon. When I was first able to run a couple months after chemo, even just a mile, I was so tired- it literally was the only thing I could do the whole day.
On October 8, 2017 I ran the Portland Half Marathon as a SURVIVOR and in memory of my mom- more than I had run in a year and a half. I have come a long way but still have a long way to go. Running helps me cope with the rollercoaster of emotions that I have been through and I will keep going!…already looking ahead at what I can train for next.
You never see the hard times in a photo album or on social media but those are the ones that get you from one happy moment to the next. I have learned that so many things are out of my control, and the only thing I can control is how I deal with what life throws at me. I am grateful to be here, alive, and have the support of family and friends. I am still adjusting to life after cancer, but after all it’s life, I am alive! It’s important that I stay positive and keep going; I know there are so many people who don’t get more time, and we never know when our time will run out. I am learning how to function and thrive with my new normal. I strive to get enjoyment out of each day and help others along the way.
How did you change since cancer? Tell us in the comments below!
Photo courtesy of author.