Our New Normal

The past few weeks have been busy adjusting to that gut-wrenching news of advanced stages of cancer. Every time I start to write, I end up teary and unable to see the words. Our world has been topsy-turvy as we navigate the recovery from surgery and the preparation for chemotherapy.

At our first meeting to prepare for chemotherapy, we were advised that she will experience hair loss within a few weeks and it is recommended to shop for a “cranial prosthesis” now while the hair color, texture, and style can be matched. So, off to the wig store we went. I tried to point out electric blue ombre wigs and spiky pink wigs and long Penelope Cruz wigs – she went for one with the exact same cut that she has right now. At the moment, this feels comfortable to both of us to hold onto who she was before the cancer, but we both know that at some point we need to let go and embrace the transformation that comes with a life-threatening experience.

Hair has a both a cultural and a personal attachment. It is an expression of our identity, an outward connection to who we are on the inside and in relation to the world around us. While the littles are curious about the wigs and the upcoming haircut that will shave Mami’s head, they really do not understand yet. And, right now, we only have a taste of understanding. We stumbled to explain that the treatment Mami was getting would cause her hair to fall out. And it is good that we live in summer, because it will be nice and cool. We offered that any of them could also select a wig and, if they want, they can shave their heads, too. Because hair is just hair and it will grow back. I think I said this more to reassure myself than any of them. That being said, everyone excitedly selected a wig that best expresses his or her self. Guess we will all be sporting wigs this summer!

Another difficult decision was to implant a quarter-sized port to help chemo run smoothly because it connects a catheter to one of the main veins leading to the heart. This allows the chemo drugs to be delivered quickly into the bloodstream instead of searching for a workable vein to prick at every infusion. And it also means another surgery, and another scar.

All of the littles are trying to process this experience in their own ways. Victoria has become terrified of bugs. So much so that she does not like to walk across dirt where she can see the ant piles. We have spent many days following an ant with a magnifying glass and creating an ant farm to better understand these amazing and complex insects. And George wants to see Mami’s scar every day and asks incessant questions about the surgery and the treatments and has nightmares about monsters eating us from the inside out. Alexandra has been more melancholy than usual, observing carefully to see how the adults in her life are responding to any new information, and clinging to keeping everything just the same. And Henry swings between taking care of everyone and being afraid of going to sleep because something might happen to making sure that George has a little Christmas tree lit next to him in bed because it brings joy. And he makes “creations” that he gives to us and asks us to keep them close to our heart. We patiently listen, reassure, hold, explain, and love on them as hard as we can.

Amidst negotiating all of these medical and financial and emotional decisions (our first hospital bill was $168,400.78), I am still juggling being the kind of practitioner I want to be in my work and being the kind of mama I want to be with my family. It doesn’t always happen. My frustration tolerance is low and my desire to have those perfect moments is high. The other day, when I couldn’t manage more than cereal for breakfast, George tipped his bowl over while being goofy, and I barked at him, which made him immediately tear up. Henry jumped up and said, “Mama, he was being silly and he is only still little. George, can I help clean up?” And I took a deep breath, and gathered George in my arms, and apologized, and we all cleaned up the spilled cereal together.

Thankfully, I have preserved our adventure days, filled with hiking and fairy houses and sand castles. However, this unexpected, and painful, experience, has lead us onto a slightly more bumpy road than we expected. I continue to be grateful that we already live our lives as joyfully as possible. And I have found new gratitude that our previous losses have taught us how to be resilient in the moments where the very fragility of life is so evident. And I am humbled by those members of our safety net who have helped us in so very many significant ways.

This is our new normal.

10 Comments

  1. Beautiful, darling, and so deep and good and wise. Y’all are wonderful parents and wonderful family members for and with one another. I pray the hand of the Great Physician be upon you all through this unchosen adventure and that the healing experience will bring profound blessings to you all.

  2. Beautifully said. I believe this blog will serve you in many ways…and almost more importantly, will serve others. And that, my friend, has always been your greatest gift. Keep your faith. 💓

  3. I pray with you, carry your burdens to lift some of the weight and look for ways to support you all.

    Much love and light surround you all

  4. I’m praying for a complete healing for the entire family Mele being completely healed and delivered from cancer God bless you

  5. I’m not sure if you remember me from Unity of St. Pete. I sat with Henry while you played piano for us for a few months. I was diagnosed with stage 3b cancer 18 years ago. I had surgery, a port, chemo for 2 separate rounds, radiation and multiple surgeries. I was a single mom of a four year old boy and I had a fabulously supportive boyfriend that didn’t live with me. Please contact me if you want to connect. You can pm me on Facebook since we are friends.

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