Tag Archives: cancer thriver

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

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The Stories We Tell

10 Jan

It’s a New Year and the past month has not been an easy one. My December story was going to be one filled with joy and reunion. Literally a month ago we were putting up our Christmas tree and decorations, my excitement for my three kids to come home was building since I hadn’t seen two of the three since August and none of them could be home for Thanksgiving. Also, we had a quick trip planned to Florida because my firstborn son was graduating with his doctorate two weeks before Christmas. My December was going to be amazing, but the story changed. The morning of December 12 we brought my dad to the hospital because we thought he was showing signs of a stroke and a few days later we found out it was brain cancer. In a few short days and the day before my son’s graduation, my dad’s health took a major turn for the worse and I had to make the difficult decision to not attend. My heart broke in a thousand pieces both for my dad and for missing a major milestone of my son.

On Faith. I had a friend ask the other day, ‘With everything you’ve been through, how can you not be mad at God? or do you ask God why?’ My answer? ‘I don’t get mad at God, I get mad at people saying dumb things. Making assumptions about what God’s intentions are or what His thoughts may be, making Him actually smaller.’ The God I follow would not create a story of hardship to teach you a lesson or to increase your faith the hard way. Does God give His strongest soldiers the hardest battles? I sure hope not because what does that even mean? No. The God I love and follow holds our hand through hardships because life is hard sometimes. God to me looks like kindness, generosity, laughter, that phone call, God is all around. The Jesus I follow is one of love, compassion, and mercy no matter who or what. The Jesus I pray to brings me peace and comfort because I believe He hears me. I read somewhere that the opposite of faith is certainty. I don’t need to have all the answers, I don’t want them, but I will continue to listen, question, read, and learn. I love my kids so much that I would do anything for them, does God love you less? I will not give up on God or my faith but there are ‘whys’ we will never be able to answer and me personally…I’m ok with that.

On Joy. Fr. Ken Tanner said this in his sermon last weekend (I’m probably paraphrasing), ‘Joy–in the midst of life you see something that reminds you existence is good, God is good. Despite the circumstances life is good and experiences are worthwhile. Happiness is fleeting and circumstantial.’ Despite the circumstances of the last month, there were MANY moments of joy and that is where I want to live. Although we weren’t able to go to AJs graduation, we were able to watch virtually and when my dad watched him cross the stage he pointed in recognition and cried. Christmas was spent in the hospital but having everyone there was again such a joyful moment. There was the day when my dad was finding his words again and when the PA asked him how old he was he said ’25’ followed by him chuckling and saying ‘kidding’. Then twice, the therapy dog that walked into the room was named Roxy, the name of my dad’s dog that passed away over the summer. The first time Roxy came in there was a parade of dogs in the hall that my brother and I were watching but she was the one that turned toward the room. Many have chosen a word of the year and I usually have a word or two but this year I have more of an intention: seek tiny joys. So many joy moments reminding me that simply existing was good and that God is still so good.

On Hope. Anne Lamott says, ‘Hope springs from that which is right in front of us, which surprises us, and seems to work.’ What does that even mean? To me it means I woke up to another day of life. It looks like a hot cup of coffee, an unexpected gift, a word of encouragement. Hope looks a lot like love. Anne Lamott’s words once again, ‘Against all odds, no matter what we’ve lost, no matter what messes we’ve made over time, no matter how dark the night, we offer and are offered kindness, soul, light, and food, which create breath and spaciousness, which create hope, sufficient unto the day.’

Enough of my babbling. I’m grateful for life, for having my kids home even though it wasn’t exactly the way we had planned. I’m grateful to be married to someone who has been by my side and helping me navigate through the most horrendous things (my Stage 4 cancer diagnosis, my son’s stroke, and now my dad’s health crisis all in the short time we’ve been married). I’m grateful that I’ve had a job that helps me understand medical language and my own diagnosis to help me advocate better for myself and my dad; for a great boss, great friends, the Instagram friends that emailed me Starbucks gift cards, notes, and even small care packages. Tomorrow I have my 6 month PET scan because I still have cancer. The good part is that because of what happened with my dad I forgot all about it and did not have to suffer from my regular two weeks of scanxiety, the bad part is that from now until I get the results on Friday I will have scanxiety. This is my story, This is life.

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