Tag Archives: living with cancer

Bring Back the Joy

4 Mar

Months ago my husband pointed a couple things out to me that I did unconsciously all the time; one, I hum a few notes randomly whether it’s picking something up, grabbing something from the fridge, sitting down in a chair-random. Two, when music plays even if in the distance or if he decides to make up a song, he says I can’t help but start dancing or moving my body. Hmm. Throughout my youth and into college music and dance were my passion and great loves. I grew up taking dance and piano, singing came naturally for me. In college I started as a music major but as a first gen immigrant, switched to the more responsible science route. I continued singing into adulthood at church, events, weddings, funerals, even radio jingles. Then it stopped.

During my first round of cancer surgery my right vocal fold became permanently paralyzed and the singing stopped. The third time with cancer, after 3 surgeries and 7 weeks of external beam radiation, I developed left arm and hand neuropathy from damage to my brachial plexus-the piano and dancing stopped. The grief over losing my music felt heavy so I stopped participating. Music turned to podcasts and books, I couldn’t watch musicals or singers try out on American Idol without feeling something heavy on my heart. Even watching the worship leaders at church was gut wrenching at times. Over the years the grief has softened, but it bubbles up sometimes.

A couple significant things happened over the past couple of weeks. Let’s talk about the flu. Last week I had the worst flu in my life. I mean, I don’t remember ever being that sick (outside of cancer of course); high fever, body aches, migraine headache, cough, killer sore throat for DAYS-8 to be exact. Then suddenly as quickly as it came. It was gone. I woke up one day, no fever. The next day, sore throat and headache were gone. Unfortunately, my voice has not returned and it’s been days. Now, for regular folks this would be ok having complete confidence their voice would return. For me however, I have PTSD. Remember the first cancer surgery and my paralyzed vocal cord? Yeah, I couldn’t speak for about 6 months, just air. Back then I had lots more to worry about (kids, still having cancer), so not having a voice was hard but not entirely my focus. Now though, wandering through the quiet house, smiling and snapping at the dog, pointing and hand motions with my husband…I can’t describe the feeling of helplessness. Not to mention my job is also speaking to people in-person or virtually. I miss my voice and it scares me not to have it.

Back to the singing, dancing, joy part. Last week was also 3 years since my father passed away. It has felt both like it was just yesterday and also a long time ago. My dad was probably my single biggest musical influence in my life. He always played music in our home. I grew up with ginormous speakers in our family room and my dad would put classical music on the turntable and pretend he was conducting an orchestra. He was always singing, answering questions to some made up tune, and was always humming a few notes here and there. In his last week at the hospital before hospice he was pretty much non-verbal and mostly sleeping so I decided to look for Spotify stations of music I knew he loved. Classical stations but also oldies-Nat King Cole, Johnny Mathis, etc. I started singing When I Fall in Love close to his ear and with his eyes closed he started singing with me. I know in his head he was singing it perfectly as a duet with me, I could see it in his expression and when the song ended, he smiled. I have the sweetest video of this moment that I will cherish forever.

So there it is. What I thought left me and no longer brought me joy was just grief. The music didn’t stop, I stopped it to avoid the grief. Now, I can just rest in it and be grateful realizing that it has carried me all along. My dad and I share the humming and now when I catch myself (because now I’m more aware of it-thanks Jim), it makes me smile. My voice? Kate Bowler says ‘Honesty is a casualty of illness.’ I’m nervous I don’t have it right now and it is bringing me a flood of memories from cancer’s past but I know it will come back as I give my body time to rest and heal. I saw this pic online and it was captioned ‘seeing the notes she’s singing’, made me emotional.

What brought you joy as a child or young person? Go back there, sit with it awhile. We all need some positive triggers right now.

In the accumulation of loss, retain an affinity for joy and know that some truths are only illuminated by tears.’~David Gate

5

14 Jul

Five years.

Five years ago this month I got the devastating news that my cancer was back for the fourth time, but it had spread to my lungs putting me in the category of Stage 4, Metastatic thyroid cancer with distant metastasis. This is rare, occurring in less than 10% of thyroid cancer patients. The statistics are not great; 50% gone in 5 years, 90% gone in 10. I did molecular testing on my tumors and they showed the BRAF v600 mutation (lots of science) but basically, cancers with this mutation tend to be more aggressive. For the first 2 years post diagnosis, I got scans every 3 months, and since scan after scan showed stable disease (tumors still there but not really growing), my scans were spread out to every 6 months alternating between CT and PET scans.

What. A. Ride.

Last Saturday I had my 6-month scan which was delayed from June because of a nationwide CT contrast shortage (yes, there’s even a supply chain shortage on that). Monday, my oncologist sent me a text that everything STILL looks good!! STABLE! I made it into the 50% of patients STILL HERE after FIVE YEARS (Although I know there have been major strides in cancer care in the last 5 years so hopefully the stats are much better now). 5 years ago my youngest son was going into the 9th grade and all I longed for was to be alive at his high school graduation and here he is about to start his sophomore year in college. Now the longing extends to weddings, and dare I say grand babies?

How has my life/perspective changed in the past 5 years? That’s a tough question because my cancer journey started 14 years ago. I feel like cancer has been riding my shoulders forever but the last 5 have been the hardest. Not only the statistic constantly looming in the back of my mind, but that youngest child of mine had a stroke 2 years after that diagnosis, then the year after that we headed straight into this worldwide pandemic. Moving into 2022, I’ve really struggled. The whole ‘being brave and strong and keep pushing forward’ seemed too much and all the stored grief upon grief punched me straight between the eyes. I learned that the research done by Elisabeth Kubler Ross on the stages of grief were mainly on dying people and that we could not apply those same stages to the living. The living has to LIVE with that grief because it is entwined in our bodies, hearts, minds, etc. There is no ‘check the box and be done’ checkmark for denial, anger, etc leading to acceptance, while we’re alive we just weave in and out of those in no particular order. So, some of the lessons?

  1. Grief lives with us always, but it teaches us about ourselves, as well as our capacity to love
  2. My faith has become so simple; I believe, and love God and I want to love how Jesus loved. That’s it. Faith is not a building, denomination, or ‘being religious’. (I have lots of thoughts about faith and maybe I’ll write more in a later blog)
  3. Love lives in the small things, the in between moments of eye contact, lunch dates with friends, a hug, an encouraging text, etc
  4. Life can change in a blink of an eye
  5. You can’t stop time so make the most of those minutes. Stay present and notice.

Those are just a few things that come to mind. This year in particular I’ve been the angriest, and the saddest more than I’ve ever been. On a recent podcast, the speaker compared life these days to a tsunami. After the big earthquake a tsunami happens, then it’s waves and waves of aftershocks and destruction, but over time, the waves die down, then things slowly heal and become normal again. We just went through and are going through a global pandemic with the first hit in 2020. The aftershocks and waves are still happening giving us no time to heal; not just waves of Covid surges, we’ve had a war start in Ukraine, civil unrest, mass shootings, so so much. My ‘earthquake’ happened in 2017 with my Stage 4 diagnosis. We have had no time to heal.

Look up

I don’t mean to be trite but one day I was driving in my car, crying (which has been my norm over past months), and completely overwhelmed. After stopping at a stop light, I looked up. The sky was so blue and vast, and I was reminded of how small I was, literally just a speck in comparison. If you haven’t seen the latest images from the James Webb Space Telescope look them up. The universe is SO BIG. Looking up helped me feel better. Looking up reminded me that the God I believe in is SO BIG and that I am so small. That there are numerous unanswerable things in this world and it’s all a hodge podge of joys and sorrows but ultimately, I am so small in this ginormous universe and have very little control if any, of much of anything.

I listen to a podcast hosted by Kelly Corrigan called ‘Kelly Corrigan Wonders’. Every week she does an interview one day, reads an essay she wrote another day, then reads someone’s obituary on yet another day. All of her podcasts are great but the 5-10 minutes reading of someone’s obituary has had the most impact on me. Every week I get to hear a summary of someone’s life written by someone who loved them. All of them speak of the type of person their loved one was along with a smattering of examples like ‘he/she was the life of the party’ or ‘they would literally give the shirt off their back to a stranger,’ but what makes me catch my breath are the simple memories and the small moments like, ‘she made pancakes every Sunday’ or ‘I always came home to a hug no matter what.’ None of the memories spoke of grandiose events or big family trips. Love is in the small moments. What would you like a loved one to write in your obituary about you? I think about that all the time now and try to be that person while I’m living.

I live with Stage 4 cancer as a chronic condition, much like someone who has diabetes or Crohn’s disease. It feels like a double life or split personality most of the time. Acting normal, working out, going out with friends, enjoying life, but every farther future decision is tinged with the question ‘but will I still be here?’ While every daily decision as tinged with ‘is that how I want to spend my minutes?’ or ‘Does that buy me more time with people I love?’ For now, I don’t get to say that I fought cancer and won, the before/after narrative for me is before/during. But gratefully saying I’m stable and ALIVE after 5 years is more than enough 🙂