a therapeutic blogging moment, if you please... if not, scroll on, mamita, scroll on.
i walked home from the hospital tonight. a ten block walk. it was peaceful. it has been dusting snow for the past couple of days. i needed it. the peacefulness.
a couple of weeks ago one of my dearest friends from college, a fiery red head with natural artistic talents that put me and my long list of paid-for visual art classes to shame if i let them, was back in the hospital. she also plays the piano. beautifully. because she practices. relentlessly. well, my friend has just completed her third, yes, third, bout of colon cancer and is apparently rounding up for her fourth. the primary tumor will not give up the ghost. it sits on her sciatic nerve and blocks her colon from the right back corner of her pelvic cavity. it has already claimed her kidney, her ability to move her right foot and quite a bit of nerve sensation along that leg, as well. she is 27.
we thought she was on the home stretch of a really intense round of chemo. the side effects were catching up to her, or so we thought. a year and almost a half ago, she helped me move into a tiny but beautiful apartment near the college that dismissed me. she hadn't been feeling well and had some pain in her leg and foot. i begged her to take care of my art work for me "i'll get the boys to move everything. please, please come move my art. no one understands how precious it is to me except you."
the next day she couldn't move her leg. the tumor was huge. this was her second bout of cancer. the first came at 16. yes. 16. imagine prom and chemo.
she had surgery, radiation, chemo. we were celebrating her recovery. she still looked great. her right foot dropped a little when she was tired, but otherwise you wouldn't know it. i attended her speech at a cancer survivor day ceremony. her husband had to leave and her doctors were confused, as i'm sure i looked like the proudest wife of the speaker. [i have a habit of exuding that role with people...] i was doting, and loving, and verbally praised her strength and courage. i had rescheduled my first patho exam that winter to attend the first chemo treatment. i had stepped out of lectures to listen to her cry. i gave her permission to feel like shit on chemo weeks.
two months later it had come back. [round three] with a vengeance. more surgery, out-of-state with "specialists." found mets in the small intestine. the out-of-town-doctors were not very optimistic and very reserved in their efforts. she had hit her limit for radiation. she came back home and the onc doc started a different chemo.
i had more time. i came back up to the north side for visits more often. we laughed. we cried. i yelled at the cancer in her belly to get the f#@* out.
the PET scan showed progress. from a 7.something to a 2.something with no active mets in the small intestine. the chemo was working.
she was getting tired. it was harder to play. the chemo was tough on her nerves in her hands. her hair was getting thinner. so was she. her students are loving, kind, and patient and understood when she needed to cancel piano practice.
chemo weeks got rougher and rougher. what used to be a two day down time turned into a week of shitting water and not keeping anything down.
A&D ointment and Poise diapers became her best friends. pain meds were a God send. so were friends and strangers who prayed for her, sent cards, sent gifts, stopped by, called. she started meditating. began light therapy to compliment the depression meds. her cats sat on her lap now. she wore prayer shalws. she slept on the couch to be near the toilet.
and this found her back at the hospital. her mom had come in from the next state over to help her through the weekend. she didn't want to go back to the hospital. she didn't want another f@#*ing NG tube down her nose [she has suffered many bowel obstructions]. she didn't want to take down the Christmas tree [it was the middle of January, and she had spent most of Turkey day and Christmas in the bed or the bathroom]. she just wanted her body back. she just wanted to keep down water. she just wanted to sleep in her own bed with her husband and not on the couch to be closer to the bathroom.
i came to see her in the hospital that night. i only stayed for about an hour before she fell asleep. i came to see her after work. it was late. she said she always liked it when i came best because i understood hospitals better than our other friends. that and i gave her permission to feel like shit, because i knew she wouldn't wallow in it for long. it was sunday.
i stayed overnight with her thursday. she finally slept through the night, allowing her bed to get soiled because she just needed the sleep and was tired of getting up and down with her watery stool all night. she said she felt better because i was there. i passed out hard corps in that little chair. i had just come from work and would return in the morning. i wasn't afraid to go get my own linens or towels or ask the nurses to shut off the damn IV pump if they couldn't fix the IV right now so that we didn't have to listen to it beep for the next hour until they could get in and fix it.
i might sleep better if someone did that for me, too.
they released her in the morning. it was a bit of a gamble. i think they knew it, too. but she was just so happy to go home. she had a PET scan scheduled for Tuesday. it was out patient only. she couldn't get the scan done if she was in the hospital. some red tape bull mullarkey.
whatever.
she needed the scan. her heart needed it. her soul needed it. her ass needed it. so did the doctor. he could see the chemo was taking its toll on her. she'd lost more weight. weight she didn't have to lose. her skin was as dry as can be, and beginning to show more of the ligaments in her arms and neck. i'm grateful for the port-a-cath. finding a vein would have been a bitch.
she picked me up on the way to the scan. we cried a little bit about her being so tired. we got in and out. she was being so brave. i don't know how she does it.
we took a "quick detour" up to see the Onc Doc. she needed some reassurance that the scan would be good news. she needed a little pep talk. she needed a hand squeeze.
the doc, the chemo nurse and the nurse practitioner all took one glance and said "get your ass in a chair, you need fluids. now." she dropped her pants to show us a strange new rash that had lined the edge of her diaper.
shingles.
lovely.
she was cracking about the edges. "i just need to know that this scan shows improvement. my depression is getting the best of me and ..." tears. fatigue. "i can't handle any more chemo." can you blame her?
the doc promised to read the scan before we left. he was diplomatic and didn't say whether or not he thought it would be good news. he couldn't afford to give any one false hope. we weren't supposed to get word until thursday. he's a good guy.
we sat. she got fluids. the pain started. suddenly and without warning she was writhing in pain. the chemo nurse brought in some morphine. she was already wearing a hefty
fentanyl patch. it wasn't touching it. the nurse was giving her a lecture about forgetting her pain meds at home. i was ready to tell the nurse where to stick her 22 gauge needle. still no relief. i took the car to get the pain meds and a prayer shawl from her house. when i came back, they decided to admit her for pain control. it got worse after i left. the doc would read the scans and come see us before he left for the night. i heard the surgical doc and the gen med doc pages overhead.
a friend and an aunt joined us in the room. we were making jokes, telling stories, catching up. she dozed in and out and we let her.
the doc came in. the friend and i left the room. they were in there too long for it to be good news.
we came back in. she was in her auntie's arms. we talked about being angry. we felt helpless. she felt screwed. this is unfair. we left when her husband came in.
the crew of friends is really behaving, if that is the right word.
people come see her every day. they bring gifts. some requested. others merely thoughtful. i don't see her as much. work keeps me busy. and i know i can be a bit mother bear-like at times. sometimes its easier if i'm not there. she lets me know when she needs me.
the surgeon didn't feel that removing the tumor would be practical at this time, or that she could take it, or that it would make a difference with such an obviously aggressive blah, blah, blah. the request was to make room for the bowel to work properly so some weight could be gained and a new chemo could be run. no dice.
i don't know what the new game plan is outside of TPN having been started and the report that her "bod is really responding well" and that she is singing and dancing and making paper chains [i'm betting she decorated the room].
we do what we can.
i'll keep you posted.
Labels: chemo, colon cancer, dignity, dying, friend, hospital, patient care
