My Journey With Lymphoma

Getting diagnosed with Hodgkin’s Lymphoma, again

The first time I was diagnosed with cancer, I learned your photo app will sort you as multiple people no matter how many times you tell the AI you’re the same person. And if you make a blog called Cancer, website uptime services will send you poorly-considered emails like “Great news! Cancer is back online.”

Getting cancer means a lot of things, including:

  • Getting a fax number for the written results of futuristic medical scans and treatments.
  • Becoming a seasoned judge of IV insertions.
  • Devastating the people who care about you.
  • Summoning every available unit of capacity and pushing your durability beyond scales and measures.

It means many of the things that make life worth living, like well-spiced food, quality time with loved ones, the energy to explore and contribute to the world — just feeling at peace and like yourself… they’re limited and restricted.

I forgot.

My brain protected me.

I forgot cancer is one of the world’s most insidious identity thieves. I forgot cancer is predictably unpredictable chaos and excruciating waiting. I forgot cancer strips away frivolous priorities, clarifies what’s most important and shakes the foundations of your personal, spiritual and professional life. I didn’t want to remember.

Hodgkin’s Lymphoma, again

I was really hoping to keep this blog as a mausoleum to a chapter past. I was hoping to set the page cache timeout to never.

I have done a lot of living in the dozen-ish seasons since I reached no evidence of Hodgkin’s disease.

My husband and I bought a home. I made a career pivot. I left North America, I found a love for gochujang and drove a convertible top-down through Southern California. I traveled to my husband’s home country and met my in-laws. I learned new skills, I rekindled old friendships, I faced long-avoided problems and found degrees of peace with hardships past and present.

After passing the two-year mark this January, I was looking over my shoulder a lot less. I was planning a summer full of business and personal travel to see people and places I love.

Then a few weeks ago I received concerning scan results.

Last week I got biopsy results positive for Classical Hodgkin’s Lymphoma again after a mediastinoscopy. I have a new chest port going in soon and multi-month chemotherapy calendar. I likely have some stem cell therapy in my future. And a lot of mental health care too.

The odds of remission again are overwhelmingly good. This isn’t cancer treatment in the height of a global pandemic. I am blessed with a wonderful partner, family of many measures and a supportive employer and coworkers. I have a considerable number of things I’m considerably grateful for.

But I won’t pretend I’m not scared, despondent, frustrated and already exhausted. I’m also defiant, steeled and composed. And I multitrack both in the same breath and oscillate between them moment to moment.

This is a fresh million-part puzzle. It may not look exactly like the last one I did, which is part comforting and part nightmare. It will have it’s own moments of doubt, staring down an overwhelming havoc of pieces, of exhausting, repetitive assembly and maddening disassembly and obfuscation. But knowing I have already assembled a million scattered pieces back into something whole again, does make facing the next blocking my path a bit easier.

What can I do?

It’s a question I both deeply appreciate and admittedly struggle with. It’s not that I don’t want to be asked, I just don’t have a great answer. I wish I had a good answer that matches the kindness and thoughtfulness it’s asked with.

Along the way, I may ask for some help. You never have to ask sending cute animal videos, links to interesting things or recommendations for entertainment. Thoughts, prayers, vibes are all things I’m grateful for.

The blessing wrapped in hard truth is I’m pretty well prepared, supported and there isn’t a lot to do but rise to the occasion and take each day and challenge as they arise. My sleep schedule is likely to invert to 6-8 hours awake and 16-18 hours resting many days along the way.

I’m bad at social media, I’m bad at email and bad at texting. I’d take the wager I’ll probably get worse at those things. If we’re being 100, one of the hardest parts is knowing the heartache this causes people who care about you and breaking your own heart repeatedly sharing the diagnosis and updates. Hence this blog.

The first time around, I posted here as I hit significant milestones in treatment. That’s roughly the plan again, but probably with less prose and depth of details.

Last time walking into the unknown, I’d struggled to find personal accounts and wanted share my journey to help others who might find themselves on the same path. It wasn’t easy, but knowing how it has helped others made it worth it. I’ve done that a few ways in recent years. So this time will look a little different, more abridged and shorter, but as I know more I’ll share it here.

I hope 2023 is being good to you and yours. Be good to yourself and others.