Late Night Thoughts After First Chemo Treatment

Wednesday, April 25, 2012 First Day of Chemo

So many thoughts race through my head tonight—it’s later than I’ve been in bed for weeks—that even after a half mg of Ativan, I can’t settle down. Probably it’s the steroids they had me take last night, and again this morning, with the other pre-meds, anti-nausea, Benadryl, sedatives, other preventatives. Then a full half-hour IV of anti-nausea drugs. An hour of breast-cancer-fighting Taxol, while a therapist gave me a 25-min. foot massage! I ordered breakfast from a menu, toasted bagel with cream cheese, tomato soup, juices, couldn’t eat much. Jack and Kelley fussed over me until the IV started to run, then went for breakfast on the river. I was loopy, sleepy but steroided up.  Staggery when they turned me loose, and still so. Bogey very worried about the new chemical smells on me, didn’t want to get too close. I had to explain it all, he listened carefully, then settled down and went to sleep. Later, at home, he wanted to be up near me where he licked chemical smell off my hands until it smelled like me again, then tucked his head into my chest while I petted him, and all was well.

Wes is in the ICU in Coos Bay after a bad reaction to his first chemo, pretty much in a coma, though he is stabilizing some now, kidneys have stopped failing, but it’s touch and go. He sort of wakes up, has lucid periods. I just want to go down and lie my head on his comatose chest because I know from several experiences that people in a coma hear everything and understand it—and tell him all that he is and has been to me, his year-and-a-half younger snotty sister. I so admired him as a kid, because I was tough and mouthy and he was unfailingly gentle, kind, instantly forgiving, apologizing if he thought he had started an argument with me, when it was always me who started it! Then I’d yell at him for that. But he never changed, just kept on being the kindest, least judgmental person I had ever known. When things in his family weren’t going well, he still refused to lay blame or judge or cavil or accuse or argue. Never. All these years, never. He became a minister. Then a teacher, a gentle, loving teacher. Married a wonderful teacher. Retired. Went through prostate cancer.

Prostate cancer is one of the six cancers that are “on” the BRCA-2 (cancer gene mutant) that I inherited from the Shultz side of the family where breast, ovarian, and colon cancer have laid a wide swath, and that I suspect Tim and Anne and Wes have too. Tim died of melanoma in 1996, at age 50. Anne of breast cancer in 2010. Now Wes was diagnosed the same day as I was of pancreatic cancer with liver metastases. Pancreas is also on the gene, as is melanoma. He had his first chemo treatment last Friday, end ended up in the ICU. I had mine today. It went better, in spite of my fears.

My doses are lighter than last time, so easier to take and recover from. Obviously. I have so many loving caretakers, not to mention Jack’s constant attentiveness. But just having Kelley here makes it possible for him to not have to run all the daily errands, banking, library, pharmacy, grocery store, post office. And she takes me where I need to go, stays with me while waiting for surgery and chemo, so Jack can take a break when he needs to. Being in a hospital or chemo room is really hard on him, wears him out. She gives him that gift, give him a chance to play golf when he can. She’s here to look after me, even though I don’t think I need much—though clearly, I do—it’s a very high maintenance thing, this cancer treatment. The weakness and constant appointments and phone calls and followups and changes and such with doctors, surgeons, oncologists, many nurses, even a “nurse navigator” for advice. Reminders before every event, followups after. Loving friends and neighbors call, wanting to help. They bring food, and flowers, and love. Visits can’t be long, not enough energy to maintain, but they are so welcome.

My family circles the wagons, from near and far. Taking turns, because there are other family health emergencies to attend to, also.

And I remember how often I had the thought “it take a village to raise a child but a whole damn city to take care of one frail woman in dementia”—my mother. Except I was the main part of the city. Now I’m the person needing high maintenance. Sucks. But I’m learning to receive. Jack isn’t quite there yet, though he is grateful for the relief Kelley gives him. He still wants to be with me for major events like today, no matter what. And he’ll be there for every chemo, every hospital visit. Always. He’s so tuned into me he can tell the “phase” I’m going through because he’s seen it several times before. He instantly knows when I’m faking, or playing “I’m fine, honey,” and makes decisions he can see I shouldn’t be making. We won’t head for Coos Bay unless he can see me navigating pain-free and lucid and not too fatigued. My oncologist said, “Go, lead a normal life. Just make sure you have plenty of pain meds and Colace and Sennakot with you, and rest in the car.” I can do that. Especially if we make an overnight stop in Newport at my favorite hotel, the Sylvia Beach, sitting in the upstairs library watching the ocean surge, in the evening and again early in the morning, with fresh hot coffee from the nearby coffee room.

Then maybe we’ll just drive straight back, after a short stay with Wes, and seeing Mary and Steve and Aaron and maybe Ken.

My phases. How Jack got to know and catalogue them, and rely on them. They are predictable and expanding.

The first experience was 1979, breast cancer, a red flag that would have precipitated an immediate double mastectomy now that they know about the gene. The first metastasis was  years later, 1983, behind the chest wall (so it was in the lymph and blood channels, moving around). The prediction I was given by 2 oncologists was “less than 5% chance of living 3 years, even with palliative treatment.” I accepted the diagnosis, but never the prognosis. I was too young! Jack and I had only been married 2 years! We had a farm to remodel and work! I had work to do, kids to launch, things to say, books to write! So I fought it hard, had the surgery (still not a complete mastectomy!!), the radiation, then the chemo for nearly two years. And went to work teaching at PSU most every day, except for the summer when chemo started. My first grandson, Jordan, was born that summer, 1983.

When chemo ended, I had a new tumor within 3 months, as predicted, . But by then I had been on an intense spiritual search and study, and had developed some powerful healing tools of my own. I found the ultimate answer to complete healing: healing of the mind through Surrender. What Elizabeth Kubler-Ross called Acceptance, the final stage of dying, I called Surrender, the final stage of getting well. And I did get well. It was 1985, and the tumor went away overnight, the very night of finally Surrendering. The next day when I reported for biopsy, it had vaporized, though it had been hard and fixed (not a cyst) and growing—scar tissue doesn’t disappear. I was well, then, for 23 years, until 2008, when it showed up again in both breasts, and I finally had the double mastectomy I had asked for so many times. This time I had a woman surgeon, the best, who said it was a no-brainer. And my ovaries removed, by a woman surgeon who said it was a no-brainer. My risks of having ovarian cancer at that point were 85%.

This metastasis is breast cancer migrating to organs, a first for me. The very first principle of miracles, from Chapter One of A Course in Miracles is this: “there is no order of difficulty among miracles. One is not “harder” or “bigger” than another. They are all the same. All expressions of love are maximal.” So thinking migration to organs rather than the chest wall will make a miracle more unlikely, or thinking my age could be an impediment denies that principle.

Principle #7, same chapter, is this one: Miracles are everyone’s right, but purification is necessary first. This doesn’t refer to hours or days or weeks or months of silent meditation, vegan dieting, fasting, praying, crawling on one’s bloody knees to a chapel with a statue of the Virgin. No, I finally understood that “purification” is the cleansing of the ego mind that believes one is separate from God’s Love, guilty, shameful, unable to heal, unworthy of a miracle, can’t pull it off, and so on. AND, moving one’s feet, taking responsibility to make every step toward healing that they can do themselves, the treatments, the spiritual work, the forgiveness, the love.

So, I surrendered to God’s will then, and I feel it beginning to happen again now, now that all the unknown obstacles have been knocked down: the first ominous X-ray, the diagnostic CT scan, the liver biopsy, the surgical implantation of a port that delivers chemo directly into the heart, the first chemo. The pain, finally under control without pain meds. My thoughts, “Oh, no, is this how it begins? Pain, then more pain?” have gone away. Jack noticed it right away, said he saw it in my face when he brought me the organic juice he grinds for us every morning. He knew I had emerged into the place of peace, no matter what. The place where being in God’s hands in complete trust means I’m in the safest place possible. Surrender. Knowing it will get better, or not, and I’m OK either way.

Now, my conception of “God”–or the entity to which I have surrendered–has changed so regularly and constantly that I find I can’t even define or discuss it with anyone. It’s very private. But I’m going to try. I have been a born-again, a Baptist, an agnostic, an atheist, a Unitarian, all of that. I’ve had many and various conceptions of  “God,” mostly fueled by my childhood religion, which my mother blessedly questioned, and taught me to question everything, too.

Now, and possibly only for this moment, the way such ideas change with intense and very real experience, especially those transcendent experiences that nobody can explain or even describe very well—now, my conception of God is that “it” is my own Higher Self, that part of my mind that is quiet because my noisy ego wants to talk first and loudest, but which will finally get quiet so my Higher Self can whisper the truth after my mind is through processing all its shit. I wait as long as it takes, and Witness the thoughts and busy-ness floating by like leaves on a stream, not engaging and grabbing at them. The mind needs to process the shit, before it can settle down. Then I can hear the voice of my own Higher Self. I conceive of it as my internal connection to a higher truth, the universal creative Source, collective wisdom, unimaginable intelligence, perfect Love. As my daughter Laurie describes it, “dipping into the underground river that constantly flows.” And constantly creates, makes new. And which we are all a part of, whether or not we sense it or believe it. We have become such an analytical, logical, scientifically rational tribe of reductionists, parsing everything into small enough pieces that we can explain it and make sense of it, then the unimaginable happens, and then what?

 ‘Reductionism’ is one of those things, like sin, that is only mentioned by people who are against it. To call oneself a reductionist will sound, in some circles, a bit like admitting to eating babies. But, just as nobody actually eats babies, so nobody is really a reductionist in any sense worth being against.

— Richard Dawkins The Blind Watchmaker (1996), 13. Science quotes on:  |  Reductionism (2)

  Another principle of A Course in Miracles is that Truth is so personal, so un-amenable to “learning” in the traditional sense, that one can only learn Truth from their own experience. Being “told” or “taught” even by an enlightened guru can only be like seeing a finger pointing at the moon, if we then worship the finger rather than the moon.

My experiences with serious, life-threatening illnesses has given me a treasure trove of experiences, and I’m not done yet. This adventure already has proven to be off on its own track, with me hanging on for dear life, mind wide open, trying to Witness it all. So grateful for the love that surrounds me at every turn, and the Love that I tune into in my quietness. Treatment demands many long periods of quietness, when one is too fatigued to move around much. But there is always, blessedly, walking the dog, short visits with friends, being with Jack in so many ways old and new, being with my family in a whole new but familiar way. Grateful. Cancelling out of obligations, even those I treasure and want to keep. Letting go, necessarily. Stripping down. Lightening up. Listening.

I wrote a book about the first miracle, and it sold out, almost all of the first 1000 copies. It’s now been translated to Chinese, and last I checked, was #6 on the most popular Amazon-like web site in Taiwan. I wrote it before I learned to write, so I think I’ll have to write a new one about what I’ve learned in the 20 years since, about healing and about writing. And I’m midway through the sequel to my first novel, and partly through the sequel to the sequel. And working on a memoir. I have lots to do, lots to look forward to. I plan to do it.

That’s a phase, too. Reclaiming that goal. Resolve. Trust. Surrender. Peace.