Sept 15 is World Lymphoma Awareness Day

Everything Changes: The New Normal After A Lymphoma Diagnosis

“The world breaks everyone, and afterward, some are stronger in the broken places.” — Ernest Hemingway

I have been a passionate supporter of World Lymphoma Awareness Day from its earliest days, when I was lucky enough to be part of a small group of people who helped to establish it. With so much uncertainty and lack of understanding about lymphoma, it was important to have a day to shine a light on what it is like to live with lymphoma and bring awareness to the disease.

This year’s theme, “everything changes” has hit me particularly hard. After living with follicular non-Hodgkin lymphoma (fNHL) for more than 15 years, I thought dealing with unexpected changes related to this disease was behind me.

How wrong I was.

Two months ago, we were told out of the blue that the fNHL I had lived with for so many years had transformed, and I was diagnosed with a second form of non-Hodgkin called DLBCL, an aggressive NHL that requires significant chemo, and possibly a stem cell transplant. I was floored by this new development, and completely unprepared about how to handle what was ahead.

Everything, instantly, changed completely.

Loss of everything “normal”.

I think the biggest shock is how much of my life has changed since starting treatment. I am house-bound most of the time from the side effects of chemo, which means everything related to work and life is restricted to what I can handle at home. All of my life roles — wife, mom, employee, daughter, sister, friend — have been reduced to fractions of what I was able to do before. The rapid loss of strength from the side effects of treatment has required a significant reduction in what I do each day, and the fatigue means I struggle to have energy for even the simplest of tasks.

I miss my life, and all the messy craziness that comes with it. I know it’s temporary, but returning to normal feels so far away right now in the midst of treatment schedules, pills, side effects and recovery.

Loss of self-sufficiency.

Given my lack of strength, I have also become highly dependent on others. If my husband is away with our boys, I now need to have someone stay with me, or at least be on call for emergencies. Some days, simple tasks like making dinner or remembering to take my pills are impossible (yes, chemo brain is real!).

People have been kind and have provided support where we’ve needed it. I have always wanted to pay forward the help we received when I first had chemo; it has been tough to be back on the receiving end yet again.

Loss of identity.

From changes to my appearance, to stepping back from work and social activities, it’s as if my former self has evaporated. It’s hard to describe how foreign my sense of self is these days.

Let’s deal with the hair first — oh how I miss my hair! There are times when I catch myself in the mirror and realize I had completely forgotten it was gone. It may seem shallow to focus on hair, but it’s a constant reminder that I’m a cancer patient. Like the story of Samson, I feel weaker without it.

Changes to my identity go beyond my physical appearance as well. I love what I do, and now that I need to work part-time, it’s shifted me to the periphery of core projects at work. Everyone there has been lovely and supportive, but I miss the sense of accomplishment I have from the range of work and projects I used to deliver.

I don’t recognize myself anymore.

And yet … glimmers of hope

If I’m honest though, not everything that has changed in these last months has been negative. You will never (ever!) hear me say that “cancer is a gift” or anything that remotely sounds like I am grateful for the experience. There have, however, been a few reminders that I will be able to come through this experience stronger than before.

Love made visible.

I have been overwhelmed by the visits, messages, meals and cards that people have taken time to share, send or deliver — even people I haven’t seen for years, or don’t necessarily know well. Every time someone brings muffins, or simply sends a text asking how I’m feeling that day, they’re putting up a neon sign that says “you matter to me.” I have received a multitude of beautiful messages from colleagues, friends and family that have been so encouraging and helped me get through every low point I’ve faced.

Strength is a mindset.

I’ve had to redefine what strength is, and know that it starts from within. Strength is a cousin to bravery, brings with it the mental fortitude to stare down some of the toughest obstacles, even when you feel that your body has betrayed you.

Several times, at particularly low points where I’ve wondered if I’ll ever feel well again, I’ve used mindfulness tactics to pause and simply focus on breathing. Or I’ve decided that walking for 15 minutes in the sunshine is my new version of a power workout. Strength has to be defined on your own terms, within your unique parameters.

Focus only on today.

I have always been a planner, and some of my struggles with anxiety have stemmed from not knowing how the future will play out for me. Given the uncertainties about how I’ll feel with each round of treatment or how long it will take me to recover, I’m in a continual state of limbo and realized I can only deal with what’s happening today. While difficult at times, it has reduced the weight of my worries, and allowed me to carry a much lighter load day to day.

Everything changes when someone is diagnosed with lymphoma. They’ll be grateful for you to find some small way to help them see that despite all the pain and fear they are facing, there is love, strength and support, even in small ways, to help them face this new normal and move forward.

World Lymphoma Awareness Day (WLAD) is September 15. For more information about WLAD and living with lymphoma, join the conversation on social media via #everythingchanges and #WLAD, or visit www.lymphomacoalition.org.

Connect with Alyssa on Twitter via @alyssaburkus or with Lymphoma Coalition using @knowyournodes.

This post was originally published by Lymphoma Coalition on Facebook.

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