December 8, 2021
No doubt that without your wisdom, dedication, commitment, and heart, I would not have made it as far as I have given my diagnosis of glioblastoma in July 2019. I would not have had these two years to write a book about my journey or what I’ve learned. I would not have had the time to carve a marble seashell or complete my marble goddess biding her time. Nor would I have had the time to put together a 50-year retrospective of my artwork. These are some of the high points, little islands poking up above the sea of daily life: a long and happy marriage with Henry; visits with my beloved family; my ongoing work with incarcerated students; puttering in the garden; and simply being with my horse out in the field. For this extra time, which another doctor would have doomed, I thank you profoundly.
As you know, I have had four clear scans in a row, a year of being cancer-free. I bargained successfully with you to have a drug holiday from chemo, my last infusion having been in mid-September. Aside from my usual sinus headache due to drought and who knows what else, and a brief negative reaction to the booster, I’ve been holding my own, able to work around our homestead, walk, work on the computer, and continue to do my art. Although I would be fooling myself to think that I will ever get back to 100% — aging, after all, is an irreversible factor — and I’m sure that there is more I could do to increase my strength and endurance, I feel as if I am on the right road and all I need to do is stay on it and keep going.
As you might be picking up in between the lines, I am coming to a decision that I do not want to continue cancer treatment in the Western mode. A good friend recently asked me a pointed question in regard to getting another MRI: “what would you do with the information?” That stopped me. What if another scan found glio up to its old tricks? Would I go through another craniotomy? Six more weeks of radiation? Another round or two of chemo? My body says emphatically, no. I would divide my “no” into three lines of reasoning:
The first has to do with me, my body, and what I’m willing to put myself through. I will be 71 the end of March. I’ve had a great life doing pretty much what I wanted at any given point. I’ve enjoyed the support of family and friends. I have brought my gifts to my community and given freely of them. I have lived and I have loved. I feel as if I have fulfilled my purpose being here on mother Earth. Why prolong inevitable death when the quality of life is diminishing? I’m ready.
The second reason has to do with Henry who has been a saint through this whole journey. But it’s a burden on him being the caretaker, the driver, the one who deals with paperwork and g-damned insurance, the one I count on to be steady and true. I’m sure he would say that it would be worse burden to have me die and not be present in this life; I would say the same if the shoe were on the other foot. But he has my back and will support whatever I decide.
The last reason has to do with how humans are living on mother Earth, with what is sustainable and just, and with what is not. I’ve lain underneath billion-dollar machines and ingested very expensive poison wondering why I get to have a million-dollar brain, and other people with no health insurance don’t even get inside the hospital doors. I’m well aware that if I had been diagnosed 10 years ago, living as an artist and adjunct professor with no insurance at all, I would be up shit creek or dead. How can prolonging my life out of the lives of so many others justify the resources required to continue expensive high-tech treatment? I’m having trouble squaring that up.
Are there holes in my argument? Of course there are. I know that none of us gets to have a do-over or an alternate ending. None of us can be sure of the outcome of any particular decision. I know and fully expect that your training will dictate that you argue that I need to stay with the course. And it’s not like I can present you with a comprehensive treatment plan of alternative medicine I can expect you to embrace. The truth is I’m not sure what I will do aside from listening to my body as best I can and continuing to regard glioblastoma as my sensei.
Nevertheless, it would be a great gift to me if you could see your way to supporting my decision, even from a distance. On a practical level, I realize that as long as I have a port inside me, I have to schedule appointments to maintain it, and if we can get the port to open and draw some blood then we might as well scan the blood for any signs of disease. It would probably also be a good idea for me to stay on the antiseizure medication — Keppra – at least at some minimum dose. I would also enjoy my monthly pulses of steroid if that seems like a good idea to you. But aside from that, I would just as soon stay home, eat well, walk more, breathe more, write and make art, open my heart more, rely on my alternative healthcare providers, and trust that I will learn what I need to learn while I am in this part of the dojo. I will practice gratitude until it’s time to bow out, walk through the doors, and go home.
Many blessings to you all.
Kathy Park Woolbert
All that you say makes total sense to me. I was a Hospice nurse for almost 30 years and i understand and respect your feelings and your plan. My heart is with you. Love toyou, hetty (heather)
Thank you so much for this. I have also made similar decisions regarding my treatment both in the past (ending treatment early and breaking up with steroids) and what I will and will not subject myself to moving forward. You’ve expressed it beautifully. I am saving this in case I need to present something similar in the future. Thank you for including us in your dojo Sensei.
thank you karen for your kind words