{"id":2846,"date":"2020-12-28T07:16:29","date_gmt":"2020-12-28T12:16:29","guid":{"rendered":"https:\/\/robinbotie.com\/blog\/?p=2846"},"modified":"2020-12-28T19:26:47","modified_gmt":"2020-12-29T00:26:47","slug":"duetting-memoir-48","status":"publish","type":"post","link":"https:\/\/robinbotie.com\/blog\/duetting-memoir-48\/","title":{"rendered":"Duetting: Memoir 48"},"content":{"rendered":"

\"Duetting:<\/a><\/span><\/p>\n

My daughter was measured and marked for radiation. In a waiting area down the hall, I chewed at my cuticles as Marika got the first of her full body radiation treatments. She had to be seared and zapped cell by cell in order to live. It made me nauseous. They wheeled her back to the room on a gurney and she napped the rest of the day as I sat, waiting in the dimmed light by her bedside. At dinnertime neither of us could eat. I gently rubbed her feet before driving off to Hope Lodge.\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/span><\/p>\n

At Hope Lodge on Tuesdays I got free massages. Thursdays it was free dinners prepared by a group of med students. I took Bernadette, a cancer patient who lived there, out for port on her birthday, and watched another resident cook aromatic African dishes. In the afternoons I explored Swan\u2019s German Market, the Public Market, the Monroe County Library, and Captain Jim\u2019s Seafood, always bringing back some bit of Rochester for Marika. Each day I exhausted myself into oblivion. And then the transplant preparations got stepped up.<\/span><\/p>\n

\u201cPreparations,\u201d Laurie said over the cell phone, \u201cis really a euphemism here. What it really means is wiping out her blood cells and immune system with chemotherapy and radiation, and then \u2018rescuing\u2019 her with the donor\u2019s cells.\u201d<\/span>
\n\u201cLaur, what\u2019s the deal with GVHD?\u201d<\/span>
\n\u201cDidn\u2019t you read any of the stuff I sent you?\u201d<\/span>
\n\u201cI did, but it sounds better coming from you,\u201d I said.<\/span>
\n\u201cWell, Graft Versus Host Disease is a fascinating condition. What can happen, just about any time in the first year or two after the transplant, is that the immune cells in the donor marrow can begin to attack the recipient\u2019s tissues and organs. They still think they have to protect against \u2018foreign invaders,\u2019 and are totally clueless that THEY are the foreigners.\u201d<\/span>
\n\u201cYeah, they warned us it could get nasty,\u201d I said, wincing.<\/span>
\n\u201cIt\u2019s her only shot, though. There are no more drugs capable of giving her a cure,\u201d Laurie said. I knew that. I was still stuck on the part about the donor\u2019s cells attacking tissues and organs \u201cany time in the first year or two.\u201d<\/span><\/p>\n

It was snowing on transplant day, January 26, 2011. All morning long I watched outside the hospital window and checked online for weather-related transportation delays. Finally, midday, a courier delivered the stem cells in a picnic cooler. I collapsed on the end of the bed. Giddy with relief, I even smiled and joked with my ex-husband who had arrived with his wife and a cake. We gathered around to watch the donor\u2019s blood product slowly seep into Marika\u2019s veins via a long tube in which I pictured tiny cells charging forward on teensy running feet with swords pointing ahead. We had a little birthday party, and toasted to Marika\u2019s new life, with Martinelli\u2019s bubbly apple cider. After, in a trance, I washed my hands in the non-patient bathroom down the hall by the elevators, and sang softly, \u201cHappy birthday to you, happy birthday to you. Happy birthday,\u201d I choked, \u201cdear Marika.\u201d My eyes filled. My jaw quivered, \u201cHappy birthday.\u201d It was like whispering a prayer. Only I was downright pleading for my daughter\u2019s recovery, \u201cTo you.\u201d<\/span><\/p>\n

The next morning, I returned early to the hospital from Hope Lodge. Marika sat in bed peering down at her chest, her head angled to accommodate her good eye. She was flushing out and disinfecting her own port as a nurse gave directions. Glancing up at me, Marika smiled. She looked ready to take on the world. Like she could deal with aggressive foreign cells, or doctors who dared to tell her No, or whatever else life might throw at her.<\/span>
\n\u201cMom. I just got accepted into the University of Technology Nursing Program. I\u2019m going to Australia next year.\u201d<\/span><\/p>\n

Two weeks later, on a Friday afternoon in early February, she was pedaling away on an exercise bike someone had left in her room. In sweat pants and a tee shirt, she almost looked like her old self, the athlete, the soccer player, the powerhouse-Marika who would sneer at my panting as we jogged around the block together.<\/span><\/p>\n

The car was packed for my trip home for the weekend. I felt torn, as I always did, whenever I left Strong.<\/span>
\n\u201cDon\u2019t forget to put your laundry in the new blue laundry bag,\u201d I reminded her.<\/span>
\n\u201cO-Kay, mom,\u201d she said, dismissing me.<\/span>
\n\u201cAnd remember to keep yourself hydrated. No caffeine drinks.\u201d<\/span>
\n\u201cMom, okay.\u201d She rolled her eyes.<\/span>
\n\u201cAnd when\u2019re you gonna take these pills that have been sitting here all morning?\u201d<\/span>
\n\u201cMom! Get a life,\u201d she barked. \u201cGo.\u201d Conscious of my nagging, I silently picked up my computer and the old green bag of dirty laundry. I walked out the door. Without a look back.<\/span><\/p>\n

Late that night I got a call. Marika had been admitted to the Intensive Care Unit with pneumonia, low blood pressure, and respiratory failure. She\u2019d asked for me as it became more and more difficult to breathe, while her doctors and nurses awaited her consent to be sedated and intubated. Somehow, at home, before racing back to the hospital early the next morning, I slept. I know, because I wrote down my dream.<\/span><\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

My daughter was measured and marked for radiation. In a waiting area down the hall, I chewed at my cuticles as Marika got the first of her full body radiation treatments. She had to be seared and zapped cell by cell in order to live. It made me nauseous. They wheeled her back to the […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1998],"tags":[2145,2175,2186,247,388,2049,2039,2174,2090],"class_list":["post-2846","post","type-post","status-publish","format-standard","hentry","category-1998","tag-cancer-mom","tag-child-with-leukemia","tag-duetting-memoir-48","tag-grief","tag-loss","tag-mother-daughter-relations","tag-parenting","tag-transplant-preparations","tag-young-cancer-patient"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts\/2846","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/comments?post=2846"}],"version-history":[{"count":0,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts\/2846\/revisions"}],"wp:attachment":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/media?parent=2846"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/categories?post=2846"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/tags?post=2846"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}