Back at the hospital. I had projected a lot of fear and despair into my memories about being here, remembering the sedation, the nausea, the tests, the darkness of chemo and so many people. This time, the pace is slower; I recognize many of the nurses like old friends, I know the routine and, more, I know what to ask for. That means asking for nausea meds that don’t give me headaches or put me to sleep, and putting a sign on the door that basically says keep out when we need the quiet. I hope for less PTSD when I get out… but I am not sure about it. Five nights of peeing every hour while still wired on steroids can do a number on my soul. The poisons still drip with their accumulating toll. Dreams are the first to go, not to return until I get out.
I entered Saturday while Steve was returning from a short visit to the island with the companionship and support of Liza Michaelson and daughter Elena. Within hours, I was hooked back up to “Herman”, the ubiquitous IV Pole, and thoroughly on the Hospital Agenda. The IV Pole has to be unplugged from the wall and walked with me everywhere, even every hour to the bathroom. It is a tether, stopping any flow of spontaneous movement.
Rituxan was first on the list. This is one of the drugs that is actually specifically developed to tag (and kill) the proteins for my type of cancer. (wow, I am not used to saying that word. Cancer? I have cancer? I guess that still hasn’t sunk in.) I like drugs that are specific. On the first night I was here this time, I began a 24 hour dose of Methotrexate, the giant of the B-Round chemos. Within hours, I went from normal appetite to recognizing the slow approach of nausea, and then out came the anti-nausea meds and then the steroids, which pump me up so that I need lorazepam (Ativan) to calm me back down
Coming from a home where we make our green smoothies and take our probiotics, and enjoy raw food and religiously take our well- researched supplements (or at least, I do), it is hard to get it completely stripped away in this immune-suppressed, doctor-controlled world. And instead, you get first the chemo, then the rescue for the chemo. I love that one. First we will pump you full of this intense poison to kill all the hidden leukemia that we can’t see, but we know is there, and then after a few days, we give you a “rescue” to stop the cell-killing action. And when your level of this Methotrexate poison falls to a certain acceptable level, in 4 or 5 days, then you can go home and recover.
There will be other chemos in Round B, including the twice daily Dasatinib. This is the “Gleevec relative”, the drug that takes on the Philadelphia-positive chromosome. Before this drug, which was just approved, most people with this chromosome simply died. So, as the nurse practitioner said: “it is a good time to have this kind of leukemia”. What’s a nettle-eating, smoothie-making wanna be locavore to make of all this? I take the pills they give me, and I don’t take the things I used to take now because my whole world is different. Raw foods could make me very sick, probiotics and certain vitamins are a definite, life threatening no-no.
I don’t fight this. I have surrendered to my own cognitive dissonance and the schedule drawn up by the medical team. I can’t make sense of it except to understand that this primitive way of killing off the body and stopping just short of really doing it is the only way they have right now of curing this disease. We may look back in 5 years and say wow, how barbaric. But without this blunt-edged approach, I won’t have 5 years. All this chemo… it’s like using a big rock to try and kill a little bug in soft dirt. You might do it. Or the bug might just burrow down further and not even be touched. And they know it and even say it. Dasatinib is the only drug that I know for sure, and they know for sure, might really work. But under the theme that more is better, they use many other chemos, some that have been around for 30 years. So, I surrender. I take the pills. I let the chemo drip in and I try not to numb out. And, in the end, that’s the biggest challenge of all. How to allow this invasion with some grace—but not put up the big barriers that surround the heart and keep everything away—the pain and discomfort and confusion but also the vulnerability, the joy, the love and the healing. (See Ted Talks: The Power of Vulnerability. Very good.)
Which brings me to you, reading this. My heroic husband and dear daughters, my dear friends, members of my broad and vibrant communities, people I hardly know, people that I have lived alongside for years, strangers, old childhood friends … you have flooded me with your love and support. Your cards and messages and gifts and prayers neutralizes the chemo and the dreary effects of the chemicals.
Let me say this stronger. The power of your love and support took ahold of my oyster heart and pried it open. It could have stayed closed tight for a long time, maybe forever, while the soft body of my soul hid away from all that was happening. But thanks to you: your strength, your insistence, your love— I couldn’t keep it closed. And when it opened, of course, I have to throw in the pearl—the analogy is just too tempting and well, obvious. But, there it is—shining and translucent, the treasure of connection—from my life to yours. I cannot even begin to utter the words of gratitude and appreciation that would do it justice. So, a simple “thank you” will have to do. You make all the difference, day by day.