In August of 2000 an undetermined mass was found in my body, taking up all free space in my chest, pressing against my trachea, heart/aortic valve and left lung, with a series of tentacles that entwined around the veins and nerves in the upper left quadrant of my chest, affecting diaphragm and vocal chord function. I underwent a sternotomy to remove it, but it was deemed inoperable and I was closed back up a short 20 minutes after being wheeled into surgery.
I was initially told the “experts” at my hospital felt certain it was thymoma, a rare form of cancer, and that I needed to begin putting my life affairs in order, as the prognosis for thymoma was 6 weeks to 3 months. A national pathology expert (who happened to work at New Orleans’ Tulane Cancer Center) was called to weigh in on the matter. He determined I did not have thymoma, but rather non-Hodgkins lymphoma of the thymus gland.
I then journeyed to M.D. Anderson in Houston for a second opinion. The head of the lymphoma department was eager to treat me, wanted me as part of his clinical trial. M.D. Anderson and Houston were very sterile to me. I felt like a number being herded from one section of the hospital to another, found very little humanization there. I explained to the doctor that, although I had full faith in his abilities, if my situation was as dire as he said (he gave me a less than 20% chance of survival) and if I was going to die, I would rather do so surrounded by my support system of friends and loved ones and to have that experience at home in New Orleans. He told me he could not guarantee I would survive the drive home and that I could not fly because my lung kept collapsing, that I needed immediate treatment. When I still insisted on going home, I was made to sign a release form stating I was aware of the situation’s severity and still chose to leave their facility.
I survived the trip home and began treatment at Tulane’s Cancer Clinic. I was checked into the bone marrow transplant ward, not because I needed a transplant, but because my white blood cell count was as low as it could be without my being dead. The bone marrow ward was an isolation ward. I was there to keep me protected from germs. I thought.
I was allowed to have my cd player brought in, my lavender-scented linen spray and hand lotion (things that made me happy.) I could not have flowers but a friend was allowed to bring in a silk scarf with a bright and colourful bouquet of flowers on it and the nursed pinned it to my bulletin board (below the daily listing of my body’s statistics.) It was amazingly beautiful to look at each day.
I would wake and a group of nurses would be in my room, just hanging out, grooving to my tunes (an easy-listening, all instrumental cd of Beatles music, Tommy Makem cds, traditional Irish and Welsh music.) I had a standing order with the nurses that if they ever entered my room and my music was not playing, to please hit ‘play’ as I wanted to absorb the music at rest, as well as while awake. I told them to feel free to use my lavender hand lotion and to please mist my bed occasionally with the linen spray because I enjoyed the smell. I only asked that the television never be turned on. The Gang, as I called them, confessed they just really enjoyed the feeling in my room and that is why they were always there, while I slept.
I had two stints in the bone marrow ward. The initial check-in to begin treatment, I stayed a week. I was told I must not touch money and to stay away from grocery stores and shopping malls and especially to avoid pushing a shopping cart, as exposure to the germs would literally kill me. I was out in the real world for three whole days and had a relapse, my white blood cell count again as low as possible without being dead. I “coded”, passed over, died three times during the initial month of treatment.
The nurses were very kind, they looked upon me with great compassion in their eyes. Late one night, one of the male nurses, who was always doting on me, confessed they “were trying to make me as comfortable as possible until…” The next day, my oncologist explained that it would not only be a wise thing to make sure all of my financial affairs were in order but that I should make the family member who would be responsible for my funeral arrangements aware of what my wishes were.
When the doctor left, I sat numb, gazing straight ahead, looking at my bulletin board of statistics, wondering what all of those numbers meant. I buzzed for the nurse and asked her to go over my stats with me, to tell me what numbers were the lowest acceptable levels, what were the ideals, and where I was. I then vowed that I would do my part in envisioning, meditating on becoming well. I told her that I appreciated all of the good work she and the rest of the hospital/cancer clinic staff were doing on my behalf and to know that, should I die, they had not failed, that death is a part of life and that I was most appreciative for all they had done for me. She left the room with tears in her eyes.
I was hearing my oncology team clearly and they were telling me I needed to prepare to die. I was okay with death. I had no regrets in life. But as I sat in that hospital bed staring at my unacceptable statistics, I glanced down at my lovely silk scarf coloured with beautiful flowers and I thought, “But what if I have things to live for?…”
Ever the list person, I grabbed a notebook and pen from my nightstand and began making a ‘List of things to Live For.’
Please note: My list was made years before The Bucket List came out and there is a very big difference, I feel, between a list of things to do before you die (focusing on death as the end result) and my list of things to live for (a slight nuance but one that is hope filled and concentrates on looking forward to the experiences of life.)
My list had silly things, frivolous things, profound things, experiences I wanted to have, people I wanted to meet, places I wanted to travel.
As I finished writing my list of things to live for, the “counselor” arrived to talk with me about my circumstances. The nurse called him after our talk because she thought I was suicidal. Dr. Tim (who is now a very dear friend of mine) sat with me about an hour. I explained my way of thinking to him, showed him the little things I insisted I be surrounded by that made me happy…for the sole reason that they made me happy. I read to him my list of things to live for and told him why I felt it was important for me to envision doing things I felt passionate about. I went over my current list of statistics and discussed what I understood to be the acceptable levels and how I felt my having this information and knowing what OUR goal, as a team trying to heal me, was would help me to help them in my becoming well again. As he parted, he stated he needed the conversation with me more than I needed the conversation with him, that there was nothing wrong with me. He hugged me, rubbed his hands with some of my lavender hand lotion and left, visibly happier than when he entered my room.
Within days, my white and red blood cell counts were good, all other stats acceptable and I was released to go home. I underwent a full eight cycles of CHOP chemotherapy (the largest amount legally accepted before it becomes deadly in the body,) radiation therapy, pulmonary rehabilitation and finally a breast reduction so that I could once again breathe with ease.
I was told by “The Experts” that my cancer would return, that I should be prepared to deal with it again within 5 - 6 years. When they said “when it returns…” I would correct them and say, “you mean, IF it returns…” to which they would roll their eyes and explain that they, as experts, knew the nature of my very aggressive type of cancer and in their expert opinion, I would be dealing with it again….soon.
I am happy to report that “The Experts” and all of their expert opinions were incorrect. When I made eight years cancer free, one of our nation’s top lymphoma specialists told me that, in her expert opinion, if the lymphoma had not returned in eight years, it would not return.
And then she said to me, “Whatever it is that you are doing, keep doing it. You are free to go about and live your life.”
Now, if you had asked me if I was living my life tentatively at that point, I would have told you “absolutely not!” But after the doctor said that and I was, literally, given permission to LIVE Life free of fear, I realized with the burst of my tears and the immense feeling of weightlessness, that I had just been unburdened a very heavy, albeit hidden, load.
It was an incredible journey with a lot of soul searching, reprioritizing, purging, embracing, celebrating all that this life, my life, has to offer. It became abundantly clear to me that Life was, indeed, for the living - noun and verb. For the action of living life, of gat