This is Part II of an interview with Ondreah Johnson, RN, a resilient thriver who is currently in treatment for breast cancer. You can read Part I here.
What have the challenges and rewards been?
Challenges — being able to ask for what I want, knowing what I want, being ready for yes or no responses. Really being available to listen to myself and allowing myself to ask for what I needed. Before my hip surgery I had this ‘need’ initially thinking that I had to have everything in place before the surgery because I couldn’t, wouldn’t be able to do much afterwards. And then knowing I couldn’t possibly get everything done before the surgery, and I would have to let others take care of things (like shopping, cleaning, preparing my rooms, having the tv, the internet, the room for another available, the bills paid, figuring out how to get my pay deposited, and so much more. Somehow, somewhere in me is this belief that I had to have it all together before surgery. This showed me so much about what I ‘learned from the family and even society’ that we/I, a woman, [it’s] not enough just to be ready for surgery that somehow, I was supposed to BE it all, do it all and get it all done… what a crock of shit.
Another rich mine field is the letting go and being ok with whatever is not done… or not done my way… no matter how many times I thought I was ‘good ‘ with whatever someone did. I could find a way. I limited my receiving the time, the support, the gift, the love! The process of preparing for the hip surgery and then finding myself thrust into diagnosis and then treatments for cancer moved me into a deeper awareness of where I do not, have not, seem to not be able to, let love in! Sure, I could talk about it, share it, open to it, be aware of it, this letting love in… And still in some way I was not opening to love, not really. How could someone say cancer brings Love to someone? How can trauma? Drama? Chaos? Vulnerability? Bring love to us? I am left to ponder this every day now.
When I returned to my hospital room after hip surgery I was greeted by the smiles and loving energy of my friends awaiting me, they had prepared my room just like I had asked, my soft purple blanket awaiting me, music playing softly, a chant, xmas lights twinkling in my room, aroma therapy clearing the energy of the room. A safe place, a sanctuary ready for me, created by friends and hearts that love and care for me, just because.
When I went for IV treatments (what I call receiving chemo therapy treatment) my sister rearranged her week so she could take me, especially those first two months, those treatments were the hardest. My sister and I are very different, I came to recognize how separate I felt from my sister and even my family, everyone in life, this C train sure takes one on a ride — spiritual, emotional, mental, physical. A reward? Most definitely, this to seeing how I have not been available to let love in. This journey has ripped so much away, stripping me of layers that I had ‘thought’ I had already uncovered. These traumas in one’s life bring an offering of nakedly stripping us of old beliefs and thinking. Each car on the train another thread, another layer revealed, another place to seek understanding of myself, of another, of where I was, of what was going on for me, in me.
How have your spiritual practices been a factor?
My spiritual practices [are] grounded in Heart Rhythm Meditation, breath work with my heart beat. I came to know more about me and what moves me. Ritual has always been something I’ve been drawn to and during this journey it became even more so. I found a focus within myself especially when treatments were intense. My rituals included pictures of my spiritual teachers, music, essential oils, several prayers said before every treatment, hand holding with my friends and sister who were with me, crystals laid out, the prayers especially powerful, as I offered the prayers to the treatment and to the Highest. It really wasn’t until after so much had passed that I can now look back and am more aware of the letting go that also took place during those treatments, feeling my body, feeling the meds running in, listening, singing the chants that soothed my heart, breathing deeply with my heart beat, there is a slowing down that seems to happen EVEN while things speed up.
How can medical professionals be more therapeutic?
Learning more about what they want themselves as far as their own health care needs. Just as my friend asked me ‘What would your health care needs look like?’ I would ask them. Learning to be more aware of their own needs, what emotional needs they have. Learning that being vulnerable with a patient/client is not going to stop them from being able to be the nurse or doctor or medical professional (vulnerable in that they are present to their own feelings and needs). Open-hearted, compassionate listening and presence — my experience has shown me that, when I am able to be present to my own vulnerability and share from that heart space, I am met by others and cared for with compassion.
When I think of practical things, I think of eye contact, sitting down near the person, sitting close but not overwhelming their space. Listening closely and responding with and asking for clarity from the person to be clear they understand the person’s needs. Present touch, when appropriate, as in leaning over and gently placing a hand on their hand, asking if they can touch them before touching, letting them know through ‘touch with presence’ that they are not alone. During my journey one of the things that really jumped out at me was that since the beginning of the journey there was not one person that I had to ask to sit down, to come closer, to look at me, to be with me the day the radiologist came in to tell me the final results of the biopsy. I watched as the nurse came in the room walked across the room and stood by the exam table. I was sitting in a chair near the door. The doctor came in and sat on a rolling chair and moved a bit away. I heard myself say, ‘Could you please come closer to me? I need to know you are here with me’.
Be more open and available to learn how to communicate more compassionately. Take classes on trauma sensitive therapies. Ask the patient/person what are they needing to feel comfortable and cared for. Encourage your clients, especially those going through traumatic treatments, as in IV therapy (chemo) to incorporate what feels important to them. For me it was prayers, chants, music, and so on. For another it could be more Christian-focused things, like crosses, rosary beads, pictures of Jesus, the Bible, and so on. For each of us it will be different and meaningful. Help your client find those ways that will support them in navigating through their journey. Learn about your own judgements and be willing to let them go and be open. Invite love into your life more, in ways you were not aware of. This love will radiate out to all that you encounter.
What are your hopes and fears?
An ever-present fear that whispers around me is this ‘What if it comes back, what if this is not the end and it reappears?’ What is it they say? Statistically, this particular tissue can reappear in the first 1-2 years after treatment. In the ‘cancer’ groups I am connected with on Facebook this is a constant question and offering by so many women. This ‘what if’ hanging over and around us, never really knowing when or if and yet feeling the uncertainty always present. This kind of journey takes away the naïve place in us, you know, the place that says ‘oh not me — this or that won’t happen to me’, the place that lets slip away the knowing that we all come and go in this life, the place that wasn’t dwelling on death and dying. That sense of innocence and illusion is gone now.
I hope that I can and will take this journey I’ve been on and bring to others some sense of themselves, an invitation to come to know that deep never-ending, ever-flowing river of Essence that is their light, that reveals their own Resilience and Brilliance. I hope that this journey continues to reveal to me the ways I’ve changed, and opened into my life. I hope that I can be more of a change-maker and supporter for others, that perhaps my journey will make a difference in the Care of those moving through Cancer. Living within Cancer CARE. I hope that I am up to the rest of this journey no matter what comes my way.
Any particular guidance for others facing a life-altering diagnosis?
Call me! Call friends. Ask one person if possible to be your main navigator; the one to come with you during appointments and treatments, take notes, ask lots of questions, listen to your heart, your fears and your joys, your gratitude, your grief. Learn more about your own needs. Ask for what you want. Ask yourself what would your health care needs look like? And then make that list and go for it! You have nothing to lose by asking and it could make all the difference in your care and healing.
Seek guidance, listen to your heart, to your friends, to your support system and then listen to yourself again, when you want to say NO, say NO! If you say maybe, then be willing to consider that maybe is really A NO!! Do not discount the spiritual support that is here for and with us. If chanting is important to you, if reading prayers or the bible is uplifting, if you feel a difference and a shift an opening in yourself then do it, use it, call it forth. No one else can navigate this like you can because this is your Journey and Life. Call me. I will do my best to see you on your journey. We are here to support one another along the way. You are not alone.
I had my surgery July 25th, 2017. I was excited and nervous and ready. I felt the care and the support in ways I had no idea of before. The surgery was amazing, the nurses, the doctors, the staff incredible and inspiring, the unhealthy tissue removed easily, the margins clear, the lymph nodes negative for any unhealthy cells. A Day to celebrate, for sure! I was in recovery saying prayers and sprinkling faerie dust in gratitude.
I had to wait a month and in September, when I went back to see the doctor, he suggested this pill and the reason was that this medication was shown to decrease the recurrence by 10-20% so I thought if I managed all that IV therapy I can manage this pill. The challenge with this pill is its 6 months of meds, it’s 2 weeks on 1 week off and on again we go. I am presently on my 6th cycle of this med, and in these moments, I experience numb fingers, peeling nails, burning pain and numbness in my right arm, a fatigue that is depleting, dives into and out of deep depressed feelings and then soaring upliftment. I feel worry about what if the numbness doesn’t go away, what if I can’t get my life back on track, what is that track now anyway? Will I know what to do next? I waver between wanting to get things done and not having the desire at the same time. This new med, Xeloda, mixes in the liver with folic acid and turns into a form of a chemo med called 5-fluorouracil (5-FU), everything has its side effects and we really don’t know what’s going to happen next. One thing this journey has shown me is what I call THE BOTH — Living in the “Land of And.” I am afraid and I am grateful. I am tired and I am encouraged… and so it goes…
This med will finish in February of 2018, I’ve been in some form of treatment since February of 2017. Next is the high possibility of radiation to my left breast area, even though the margins were clear and the lymph nodes negative, because the docs don’t have a specific targeted treatment for this unhealthy tissue that came to be in my breast called Triple Negative Breast Cancer they throw lots at it. We want to be as sure as possible, and every opportunity to decrease the possible recurrence is a gift! At the same time, this journey continues. I ride the train as best I can and hold on to the hand rails when moving from car to car. I am Thankful and oh so Grateful for those on the platforms waving me along and cheering me, loving me, and holding me as I ride along!