Reimagining Cancer Care with Music
/When I was diagnosed with cancer, it was a shock for my husband and me, as it is for anybody and everybody. It was unexpected, a simple routine test that went south. After several surgeries that summer, my physician declared that the tumors had all been removed. And she said the latest research showed that I would not need chemotherapy. That was certainly one of the high points of that experience. My husband and I went off to Switzerland to hike for a long planned for vacation, which was exhilarating. Despite concerns with flying and traveling up and down elevations, I did beautifully!
When we returned, we had an oncology appointment for a follow-up. We felt rather confident in the routine-ness of a ‘pass on chemotherapy’ following the comments by the surgeon. That unfortunately would not be the case.
What ensued was perhaps a couple of hours of torture. Three things happened. I was told I would need chemotherapy for 15 months. We were shown a schedule of drugs and dosages that we could not follow. I signed off on pages and pages of potential side effects that scared the living daylights out of me. And finally we toured the infusion area with its lines of recliner chairs and IV poles waiting for the next person and then the next and the next to sit down. That’s when I really ‘lost it’.
All of the tears that I had been restraining to a slow leak had now broken through the floodgates. I kept thinking to myself, ‘but I have a five year old, I have a five year old.’ It was as though this mantra could protect me from this fate.
It felt a bit like us against them— our fears up against their knowledge, their ability to produce speech and our difficulties understanding what they were saying, their confidence and our vulnerability. I would like to reimagine how cancer news can be given. It should be given with care, just like the medicine in order to get the best response from a patient (a.k.a not letting them freak out).
Here goes. I’m going to write this out as a script.
Doctor: My dear, you do have a cancer that needs to be treated with chemotherapy. PAUSE
We have an excellent program organized for the absolute best results. PAUSE PAUSE
I’ve printed this information for you to read later today or tomorrow. Now is not the best time to take in this information. I just want to assure you that we have the best treatment that modern medicine can provide and we are going to do our best as your doctor and nurses to walk you through this. PAUSE
In order for you to do your best as the patient, you are going to go next door to our Wellness counselor. She is going to give you great ideas for your wellness before, during and after treatments.
In time, you are going to have tons of questions so we have scheduled the second half of this appointment in 2 days. You will have had time to read the papers and discuss it with family or friends. That will the time for talking through the details.
Do you have any questions that I can answer now?
The patient then goes next door to meet a counselor who warmly welcomes her. Her office has soft colors, lovely art, plants and soft scents of essential oils. Her specialization is the biology of wellness, resiliency, relaxation techniques and mind-body connections., And here is what she has to say.
Counselor: I know you must feel that the rug was just pulled out from under you. I remember it well when I was diagnosed. What I know now is that you can go home tonight and begin to start banking wellness so you get the optimal outcome from your treatment. PAUSE
I have a list here of things that you can do for the treatment ahead, like cooking your favorite food and freezing it in individualized serving dishes. You can even add notes to it like ‘you got this.’ PAUSE
We know it’s not just the medicine that will get you well but the ways in which your body receives it. The list has other ideas for that too. PAUSE
I’m due to see you in 2 days after you meet with your doctor. Until then, take this list and do what you are called to do, and don’t do what you are not ready to do. These suggestions will sustain you throughout your treatment and beyond.
Do you have any questions now?
The patient leaves with all the empathy and information they need to walk forward on a path not of their choosing. The shock of a diagnosis can be softened by minimizing information and maximizing empathy and resources.
What wold you put on your list? What music would you have to accompany this journey? What song do you know that will make you feel brave? What songs do you love that will move you to exercise and stay strong? What music could accompany the hours of infusion (have you seen what is on daytime TV these days)? How can you use this time to practice wellness?
I imagine and re-imagine that challenging day. It’s been ten years since then and my reimagining has softened the memories and the shock that accompanied them. Still, it has taken me 10 years.
Wellness suggestions
Say 10 gratitudes each day for what went well.
Plan an exercise regime:
Ask a friend to go for a walk once a week.
Find a Livestrong class at your local YMCAS.
Find a yoga class for gentle stretching.
Find new places to walk in your community.
Contact your local American Cancer Society for resources.
Create a contact list for support:
Consider who you haven’t seen in a while and make that connection (this is a great time to re-connect with folks).
Consider who might be able to drive you as needed.
Consider who you might want to spend some time with during your infusion days.
Look at your diet. Are you eating enough vegetables? Fruit? Consider a nutrition consult to maximize your dietary intake.
Gather art materials. What did you like to do as a child or adult that you haven’t had time for? What have you always aspired to learn- watercoloring, knitting, etc. This is a great time for handcrafts.
What movies do you love? What makes you laugh? Or fill you with aesthetic beauty? Line them up for viewing during infusion days.
Learn a breathing pattern to reduce stress:
Breathe in counting to 4, breathe out counting to 6.
Inhale 4 counts, hold your breath for 4 counts, exhale for 4 counts.
Create playlists of music that makes you feel brave and motivated for exercise, to get out of bed or just to get to the infusion appointments. I always used ‘I’ll never walk alone’ because I never did.
Create playlists of music that make you feel calm and relaxed. Consider using this music 45 minutes before bedtime to help induce sleep. Sleep can easily be disturbed by worry so consider adding rituals to bedtime like a cup of tea, soft lights and no screen media.
Consider a counselor relationship to support you on this journey. It is a great place to park your fears and work through them so you can live more freely.
Ask friends to be with your spouse/partner and check in on them periodically. The caregivers have their own fears and anxieties.
Consider staying away from the internet where both reliable and unreliable information can be found. Let your physicians guide you. Go to sites that are directed to the patient experience like:
Download the app called Explore Living With to help organize your treatment needs (meals, rides, childcare) with friends and family.
If you like to garden and it is the right time of year, consider planting bulbs or flowers. Bless them with your hopes and aspirations for treatment outcomes. I was treated in the fall and planted bulbs at that time. They bloomed in the spring as did I.
Develop resources for stretching. Do them periodically throughout the day and plan to do them during infusions. They improve mental and physical well-being.
Find a bag that you can pack for your infusion days. Ask family members to put notes in it. Include the books, films, art materials and music that you want to have fill your days with laughter and aesthetic beauty.
Bless the researchers who created the medicine, the pharmacists who filled the prescription, the volunteer who transported it and the nurses that administer it. They have all done their best and now you are doing your best by thanking them.
Plan to dress for infusion days. Don’t go in wearing torn up sweat pants. Dress for the occasion of your well-being. Make the colors bright. Wear things you love and feel comfortable in. This is you doing your best.
If you’re not inclined to ask for help, now is a good time to get over that. People are so very pleased to be asked to do something, Make the ask. Be good to yourself.
Plan on your bedside table being an altar of sorts. Bring in pictures, statues- whatever it is that makes you feel supported.
Here is my last infusion with 7 music therapists joining me.Here we are blessing the researchers, pharmacists, volunteers and nurses. These dear friends came to sing me home and it turned the experience into one of the loveliest days of my life.
