and now… “the hospital story”… (cue ominous organ music and thunder….)
as i get ready for round 3 tomorrow, i thought i would back up and tell the story of my 3 day hospital visit after my first treatment…
so, my first treatment was on october 16th. day was fine, people nice. felt sleepy, but really rather uneventful. over the next couple of days just felt my body getting thick, slowing down, feeling the sludgy logjam push thru my veins. and…i could not sleep. i am not a very good sleeper under the best of circumstances, but this was full on insomnia. one day, two, three, four… never felt sleepy or tired, but you just know that not sleeping cannot be doing you any good. although i was not nauseous, i resorted to using an anti nausea med that mentioned “drowsy” as a side effect. no drowsiness here. not at all.
called my oncologist, (late at night of course…) told him the scoop. he prescribed ambien. sleeping pills. i cringed as i do not take things like this, but was willing to try anything. nothing. dosed for an hour and was then wide awake. i am beginning to be pissed. add to this that about day 5, my body feels like someone has taken a sledge hammer and systematically broken every bone in my body, and when they are done, they start over again to shatter the fragments. horrible.
a week later, i am tossing and turning about 1 in the morning and decide to cave in and try the ambien again. for some reason something inside me says, “better check your temperature”. you are warned that if you have a fever over 100.5 that you should go to the hospital immediately, as your white blood cell count is like, a 2 at this point in time. body has no reserves to fight any infection when you are tanked like this.
i take my temperature….102.3….i take it again…102.9…again…103.6…shit.
i call the hospital and they say, “get in here as soon as you can”. i call my mom and tell her that i need to go to the hospital and i will come and pick her up in 20 minutes. it is 1:45 a.m.
go pick up my mom and cruise into the emergency room. very nice, but overweight desk staff who are eating a pizza that has just been delivered, big gulp sodas and bags of m&m’s on the counter. hmmm….this is a place of health and healing?,,,,
they check me in, take blood, run tests. everyone really nice and competent . 3 very cute doctor guys who are all about 15 and look exactly alike take great care of me. i am given morphine and adavan and drift into a brilliant sleep.
awaken a few hours later, checked into the hospital and told that i will be there for the next day, at least, maybe more. the temperature must stabilize and be normal for 24 hours and then must wait for the white blood cells to ramp up before i can go home. so i am pumped full of fluids and antibiotics and i try and settle in. i cannot focus to read, cannot make myself breathe deeply, cannot get comfortable and despise t.v., so i am just quiet. sitting with myself and the carnival of paranoia that accompanies one when you are sleep deprived and full of an odd assortment of drugs.
my friends and family come to visit, (have i mentioned that i am loved and held beyond all rational comprehension?…goddess bless them all!) as each one enters the room, i see the frozen shock on their faces and the fumbled recovery as they try and not look panicked. at first i think it is the sight of me in a hospital bed, iv at my bedside and the borg port where i am hooked up at my left shoulder that is the cause for alarm. and then when they are gone i get up to go to the bathroom and look in the mirror.
i look like i am one hundred years old. i am stunned. i search and search to see any remnant of the vibrant woman who just came in here 24 hours ago. she is no where to be seen. my skin is grey, huge black bags under my eyes and every wrinkle and line in my face accentuated as if i were under the most horrid magnifying glass with only fluorescent lights for illumination. it is horrible and fascinating all at once. i think “you’ve got to be kidding me! i am doing this to extend my life and i get look like this and feel like shit from now on? i change my mind thank you very much!
that day come to a close and as i get ready to do my last round with my nurse till 4 a.m. i am ready for anything that will make me sleep. they give me a bigger dose of ambien and some other things and i think…finally. i wake up 2 hours later, hung over, all screwed up with the shakes and WIDE AWAKE. seriously. my nurse is incredulous.
my doctor comes to visit in the morning and is unnerved as well and very apologetic. “well, now we know not to give you steroids. we will not do this again and all we can do now is wait for them to wear off as they are in your system. your temperature is stable but now we have to wait for your white blood cells to reboot. you have to stay another day. maybe 2.”
and so it goes. for 3 days. the body aches excruciating, no sleep and nothing seems to work for either the pain, or to put me to sleep. so i breathe. and i breathe and i am present with myself in a way i am not sure i have ever been.
friday night another cocktail of sleeping drugs is prescribed and again, they do not work. i sleep 2 hours and wake up hung over, paranoid, with the shakes and WIDE AWAKE. they have never seen anything like it. i understand why sleep deprivation is a genius torture devise. the creepiest thing is that i am not tired at all, but i feel stretched so thin from the inside. like i will snap.
the food is inedible….that is another story… so my dear family and tribe bring me fresh juice, smoothies, coconut water, fresh chinese food (no msg). although every thing tastes like metal.
saturday my daughter comes with a friend of mine and she spends the whole afternoon with me. reading me david sedaris, talking, laughing. my room is actually incredibly jolly, with much laughter and goofiness and frequently multiple visitors. a friend brings me my yoga mat and i stretch it out next to the bed. wheeling my iv stand with me and doing down ward dogs and gentle sun salutes. i was told on friday that i could go for walks, so i do laps on my floor every 5 hours. keep moving it all thru.
i am told i can go outside if i wear a surgical mask, so my daughter lily and i plan an excursion and she insists on a mask too. so we suit up like bandits, bundle up and head for the outside world. as we pass thru the main doors i take in a deep breath like someone who has been under water. it is remarkable how stale the air is inside, how easily one is sucked into this hermetically sealed world of the hospital. i am struck how there is nothing remotely healing about being in a hospital. no fresh air, fluorescent lights, everything humming with electrical current, the food inedible, everything served in plastic, and the answer to everything is “what kind of drugs can we give you”.
so lily and i walk around the hospital and make our way to this enormous redwood tree which graces the side of the building. it is the only redwood tree in all of idaho and it is one a friend of mine and lily have made pilgrimages to over the last couple of years. i lean my back against it and breathe and feel the deep roots, the steady strength of it. i drink it in.
we make our way back and lily bids me good bye and makes her way home. what a gift to have her with me all day. I get ready for my 3rd night and this time i decline anything. my body is screaming “please, just let me be clear and unfogged. i promise once we get out of here and this is out of your system, you will sleep again.” so i am completely awake all night.
i listen to guided meditations, yoga nidra practice. ocean waves. nothing. finally my brain is clear enough that i can focus on my breathing, and i do, all night. i breathe and i think, and i look at many many ugly things in my mind. i sit quietly and do not turn away from anything that shows up and by morning i feel like i have been deeply shifted, again, and i am told that i am ready to go home.
the staff that took care of me were wonderful. kind, sweet, competent people. 4 of them were absolute rock stars. they said that i was the easiest patient they had ever had and they had never seen anyone have such a good time in the hospital.
i packed my things and waited for my friends to come and take me home. as i left and got into the car, i had never in my life felt so out of my body. like my entire essence was in a tiny compacted space in the very top of my head and my body was being moved by remote control, manned by someone in another continent.
i came home and did not recognize my house, my life, my body, my world.
“how the hell did all of this happen? i thought, “and will it ever feel like my life again?”
after about 4 hours i began to come down and feel in my skin. fresh water, juice, clean healthy food, no drugs. a shower. that night took my gaba relaxer, melatonin, chamomile tea and did some restorative yoga before i went to bed. slept about 3 hours, but no anxiety. by the next night it was 4 hours at a stretch and then the next, mostly all night.
what was most amazing was that i got home late sunday afternoon, felt almost myself on monday and taught 2 yoga classes and felt absolutely normal on tuesday. look healthy and vibrant, the crypt keeper who has been trapped in my body the last three days is gone. the human body is an amazing thing, in its resilience. it’s pull to right itself. to live. to thrive. to heal.
i was talking to my friend and told him i wished so much he had taken a picture of me on friday morning. he said that he had brought the camera to the hospital twice, but could not bear to do it, because it was so awful. i wish so much i had documentation of where i went and then to see where i emerged. hopefully i will not have another opportunity to take such a photo.
my last treatment was a piece of cake. amazing what taking steroids mostly out of the equation can do. i love my oncologist in that he listens to me, listening to my body. it is a dance. every step different for every dancer. nothing repeatable. tomorrow i get to take to take another turn around the dance floor and see how this dance goes.
tomorrow, 3 down. then 3 to go. i am ready.