Lisa's Journey

My Last Chemo

unstoppablesoul — Wed, 31 Mar 2010 02:26:03 +0000

I was moving so slowly, Larry decided to go to Einstein’s to pick up bagels for the nurses and patients without me. I estimated that that would give me 15 extra minutes! I threw on some clothes, penciled on some eyebrows, packed my camera, fed the dog, grabbed a hoodie and went downstairs to wait by the door. My last chemo. We parked in the north lot, rode the elevator to 13, signed in, and then sat side by side, as we had for the last four months, to wait for the phone call that would say the Infusion Team was ready for me. Tick tock, tick tock.

I saw Krystal first and then Angie. The minute I saw them I felt both overcome with emotion and more relaxed. Angie was assigned to me for the day, which pleased me since she usually works on a different floor and I was happy to have a chance to say goodbye. It took us a while to get started which was a good head’s up that this day would be different from other days. Angie wrapped my arm in a warm blanket and examined every vein. Although we didn’t get in the first time, there was no pain. She knew the day was big for me; she talked while she worked and she comforted me and told me about ways I could find closure in the process of ending treatment and, of course, come back to visit. There were tears.

Most of the day is dream-like when I try to remember it. The drugs were strong and I slept a lot. Even when I am very conversational at the time, I have little memory of those conversations afterward. I know that Larry left and Susan came, followed by Dale and Polly and Diane. Throughout the day, Krystal and Sue and Angie came in and out. They administered the saline and the other drugs like Benedryl, Emend, Pepcid, Ativan and the steroids. The hoopla – the checking and the double checking — is always around the large plastic bags of Taxol and Carboplatin that drip drip drip into my veins. Susan, Polly and Di have gotten to be pros – they know the routine and they remain respectful, brilliant, steadfast, calm and open; I love those women so much; they are my anchor and my compass. But the gratitude, debt and attachment I feel for my nurses is indescribable. They look like people but they do the work of angels.

It was nearly five o’clock before we were finished. It was the longest day I had ever spent at the Infusion Center. The drugs, as I’ve said, often eclipse my memories of Infusion Days, but the end of this day was unforgettable. Krystal came in to disconnect my I.V. and she performed each step as if it was a prayer. Watching her work was like watching a ritual unfold — a rabbi undressing the torah, a priest providing communion, a geisha preparing a tea ceremony. The room was completely silent. Tears were spilling down my cheeks. I saw Polly watching Krystal from across the room. Polly’s not a cry-er but she was crying.

Polly, Susan and I rode the elevator to the bridge and then up to the roof. It was a beautiful evening, warm and still. You could see a lot of the city from the roof and I paused to look out. Susan and Polly’s cars were parked almost side by side even though they came at different times of the day. I hugged Polly goodbye and didn’t want to let go. She waved as she pulled away. Susan and I got in the car, buckled the seat belts and drove to my house to set the table for Passover.

Leaving Siteman Center for the Wilderness

unstoppablesoul — Sun, 28 Mar 2010 04:36:26 +0000

When Miriam got to the Red Sea after all that shlepping and it looked like a dead end, she took out her timbrels and danced. I don’t think I would have done that, although maybe I’d have joined in. I don’t think I would have been one of those Jews who got the courage to leave Egypt either, even though it was clearly a hot mess. They had no plan at all, those Jews. Where were they were going? No clue. Follow me? Okay. I think that sometimes, even when things are really bad, it is comforting to stick with what you know.

!!.

Six years ago when I was diagnosed with endometrial cancer, I came out of surgery to discover it was the first night of Passover. I was very drugged and I pleaded with Larry and Susan to go home to celebrate. I longed for our lives to feel normal and I wanted to imagine everyone sitting at the table, telling the Passover story and eating the sweet charoseth and remembering when our ancestors were slaves in Egypt before they got fed up and left.

III.

Tonight, I’m getting ready for my last chemotherapy treatment which will end on the first night of Passover. (“It’s a circle, Jake,” said Rabbi Jim.) But the truth is, I’m not ready for the treatments to be over. I’m not ready to live without the safety net of tests, and nurses, and doctor visits assuring me that the cancer is gone. I’m not ready to leave the hot mess of chemotherapy to head out into the wilderness. I’m scared. Dr. Mutch’s nurse overheard me talking to him last Friday and said the last treatment is always the most traumatic for cancer patients. I loved her for understanding and for explaining that I was now part of a tribe bigger than just the Israelites.

Tomorrow, I will wake up, jump into the Volvo with a few pieces of matzoh and make the journey from my house to the Siteman Center, I hope, for the last time. I will be with people who care deeply about my well-being, my husband and friends. I will have the support of my Sisters and my CB soulmates, and my children whom I love with my whole heart. We will end the day with Tibetan bells. The nurse will remove the I.V meds and we will say a blessing and a hallelujah, maybe perform a ritual and then, ping, we will listen to the bells until the sounds fade to nothing. I think about Miriam walking all that distance and then coming not to a promised land but to a sea, and choosing not despair but timbrels. In the end – though it took a heck of a lot longer than anyone planned — some of those brave people arrived in a good place and set up camp. I’m not much like Miriam but it’s Passover; I’ll claim her story.

A Hard Rain

unstoppablesoul — Fri, 19 Mar 2010 04:18:41 +0000

I thought I had a fever last Monday. I felt warm and flu-ish so I went home early and told Larry I felt sick and wanted to be left alone. I didn’t get out of bed to have dinner. I felt so bad I just stared at the lamp and cried. Tuesday I powered through a couple of meetings but it was more of the same. By late afternoon on Wednesday, I just gave up trying to work and went home. I felt pain everywhere in my body and wanted to go to the hospital. The on-call doctor said to have my blood checked. Larry took the next morning off and drove me to the clinic. He was surprised that the receptionists and clinicians knew me. “That’s what happens when you’re here every couple weeks for four months,” I sniped. We ate lunch together and Larry took the rest of the day off. We fought about how much I work. That night I wrote to my friends and Sisters and asked for their prayers. The reality is that the treatments have been getting harder and I don’t have the same fight left in me. I managed to work from home on Thursday and felt physically better but for the first time, my heart hurt and my spirit ached. This morning, the blood tests came back and everything was normal. The Taxol and Carboplatin are just building up in my body and I have fewer resources with which to rally. When I was little, I used to watch wrestling with my grandma. Sometimes they had tag team wrestlers. When one wrestler was still getting his butt kicked, he could reach out and touch his teammate; then his teammate was allowed to jump in, fresh and focused, to finish the fight.

Two Eyelashes

unstoppablesoul — Fri, 12 Mar 2010 22:32:14 +0000

I’m down to two eyelashes, one on each eye right along the bottom. I showed Carsen and she cracked up. “What,” I demanded, annoyed. “This is funny?” Along the top of my eyelids there’s a little more activity. Three eyelashes densely packed and then a space the size of a parking lot, then two crammed together followed by a little league field. It’s hard not to inspect your face after waking up in the morning; there’s always something new to see! Interestingly, while my hair has disappeared, my skin has improved. My pores have shrunk, little lines have faded and my cheeks look pale but sort of dewy. Georgia said, “Chemo’s great for your skin.” Georgia had chemo for breast cancer about five years ago. Today she is beautiful and cancer free. My eyebrows are gone, too, did I mention? In the morning when I draw them on, little shaky brown arcs, I think of my mother who always used to say, “Hang on, I’ll be there in a minute; I have to put my face on.”

My dog, Ricky

unstoppablesoul — Tue, 09 Mar 2010 22:30:03 +0000

Is it wrong to want more from a dog? I want Ricky to take care of me but Ricky is only about Ricky. Eat, Sleep, Chase Squirrels, Walk, Repeat. Usually I accept Ricky’s aloof nature – he is a rescue dog after all, — but when I’m in my treatment weeks, I want more. I want him to comfort me. To be fair, okay, he does stay close. He either sleeps at my feet or on the threshold of our bedroom. But if I try to lay my head on him, hug or cuddle him, he looks at me as if to say, “please stop, you’re embarrassing yourself.” When I look at Ricky I can picture him at the end of an empty bar nursing a glass of vodka neat. Still, whither I go, he goes — whether it is to the kitchen, the bathroom or to find a more comfortable chair. Remember in the movie, Bambi, when Bambi’s father appears on a bluff overlooking the forest? You get that he knows the full measure of his family’s woes, but you also know he isn’t going to get down in the mess.

Chemo Round Five

unstoppablesoul — Mon, 08 Mar 2010 22:22:34 +0000

Miriam pulled up at 8:45 am and sat in the car waiting for me though I nudged her to be on time. Five minutes later, I lunged out the door, my arms filled with a briefcase, a totebag, a camera bag and a purse. Miriam rolled down the window, peered over her eyeglasses and asked, “Are you performing this procedure on yourself?” I laughed so hard I almost peed my pants. “Which way,” she asked after I got settled in the car, and we were off. The infusion started a little later than usual but the day was perfect. Rebekah, a nurse who had taken care of me during my surgery, was my therapist for the day. She remembered my recovery and made me feel safe and in capable hands. Diane and Polly and Susan took turns visiting and holding my hand throughout the infusion. Larry was home to receive me when the day was done. Five down, one to go.

Bought an Extra Week

unstoppablesoul — Sun, 07 Mar 2010 22:19:53 +0000

I switched my chemo from the 1^st of March to the 8^th of March, which basically meant for the first time I would be going four weeks between treatments instead of three. Dr. Mutch assured me that this delay would have no adverse impact on my outcomes so I went for it. There was just too much work to do and my life felt too busy to put the whole shindig into suspended animation. Tomorrow is chemo though. We’re all ready — me and the posse of powerful women who stay by my side from needle-in to needle-out, and everything in between.

Salvation through Fiddlehead Fronds

unstoppablesoul — Wed, 24 Feb 2010 22:16:56 +0000

If a Rabbi turns to text and ritual objects for healing and grace, my husband turns to grocery stores and cupboards. I think he believes that it is my palate that caught a disease and that large doses of food, lovingly prepared with fresh, pure ingredients will heal me. I cannot eat all the stuff he cooks and often I have no taste for food but this isn’t really the issue here. Every night there is a dinner and every morning there is a list of leftovers that I am to assemble for my lunches. I guess when we are vulnerable and scared of losing what we love, we turn to what we know; we invoke our god-given gifts in the hope that we can subtly shift the universe, somehow use our powers to turn waves into particles.

Sitting In The Fire

unstoppablesoul — Sat, 20 Feb 2010 22:15:16 +0000

The Buddhas say if you sit in the fire, grace will come and it will have a cooling effect. The idea seems so far-fetched, I can hardly even imagine it. Today I asked myself, what am I alive for? Stupid, I know. I usually ask this question a different way and have a developed a comfortable answer. “What is our purpose?” I ask, to which I respond, “to experience joy and relieve suffering.” Most of the time, this is good ground to stand on even when the ground occasionally feels like piecrust. But there are just days when I find it so loathsome to pick up the socks, and file the bills and load the dishwasher (a luxury I know), I have a huge and unseemly hissy fit. If there is epic-level tragedy in the world, why do we still have to walk the dog and do the dishes? Why do we still have to find meaning in the mundane? Why do love and dishes matter? This is a rhetorical question.

Sucks, Sucks, Sucks, Sucks, Sucks

unstoppablesoul — Sun, 14 Feb 2010 21:12:53 +0000

I’m sick of the side effects this time, sick of the whole stupid ass everything. My head hurts, my bones hurt, my muscles ache, I have burning indigestion or heartburn (I don’t know which is which), brain fog, my intestines feel like concrete and my limbs are filled with sludge. If I eat I feel bad, if I don’t eat I feel bad and drinking anything turns my stomach. I’m crabby, pissed off and bone-deep crying-sad. The only redeeming thing is SLEEP. All weekend, I’ve tried to stay asleep, hoping when I wake up it will be Monday when, mercifully and historically, the symptoms disappear. I’ve given up trying to work, answer phone calls, write emails, study text, read novels, catch up on research and I’ve even given up on Entourage. (Season Four sucks anyway. Ari, how could your writers do this to us?!) Anyway, if you call and I don’t answer, now you know why. I’ve thrown myself a pity party and no guests or valentines are included.

Post Script: I can’t fall asleep and the pain won’t go away. Maybe this is a kind of hell we should all be spared. No relief, no capacity to feel the blessings, no generosity toward others, just mean-spirited resentment, sadness, kick-the-dog self-pity. Bam.