Archives for category: chemo

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It is so lame to come to this party so late, but here I am. (Hangs head in shame.) Trying to catch up on Game of Thrones, as Season 7 is days away. Just days away, I tell you!

I have a task.

I had to work to enter Game of Thrones. It is not a friendly land. At my daughter’s insistence and with her guidance I crossed over the threshold. We were two episodes into the first season, when she paused the show, looked at me and said, “right now….this is as happy as these people are ever going to be.” She was not kidding. That is sobering.

The last two weeks in my reality have been rough. The creepy physical fallout of chemo has fortunately remained within the same bandwidth through out this round of treatment, but the psychological/emotional mind fucking that had skipped me for the most part this last 12 weeks, unexpectedly popped up like a leering demonic jack in the box and punched me in the face. Ouch.

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Rest assured, there is much writing flowing from this time. Stay tuned.

The last two days the smoke has cleared and I found level footing again.

Today was the final chemo. 12 of 12. I will continue to have an infusion of herceptin every three weeks, but without the taxol which is the component that kicks your ass the hardest. I will be finished with that in April.

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So what the hell does Game of Thrones have to do with any of this? I had started writing this thesis worthy discertation on why the show is so great and compelling. (Yeah, yeah, everyone else on the planet already knows this and has for years. Sit down and be quiet and watch the episodes!) I discovered that once you get past the Primary B’s of the show (beheadings and butt sex) it is the feel good show of the year!

Who knew?!

Thank freaking god I do not live in Ye Olde Times of Yore dealing with that bleak and hopeless nightmare wondering how and when you will be dismembered. Shit, I am just chillin’ in my air-conditioned house baking in some chemo. This is mild in comparison.

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I have the next eight weeks off to heal, and work, regain my health and work out before I start 6 weeks of radiation. A brand new unknown fire to walk through. Radiation coupled with the continuing infusions of herceptin. Then I shall emerge into a new life and a new routine and I am reasonably sure that being on the Night Watch fighting white walkers is not part of that, but then, you never know what’s in store in your life.

You see, I have these dragon eggs….

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Okay, “tear out your hair” is a bit harsh. How about “let loose your hair”? Being a veteran of the chemo process, this being my second go round, I was familiar with the hair loss part of the show. I like this part. Really. I find it fascinating that your hair begins to come out of your head just by running your fingers through it. Bigger handfuls, bigger payoff. The last time I was obsessed with the process and left it out in my garden for birds and squirrels to make nests with. I loved this process of release, of re-purposing. Shedding your past.

It took till the third treatment round for the hair to begin to go. About three days in, you can actually gently pull small handfuls out. It is deeply satisfying, like peeling a perfect sheet of sunburned skin. I am allowing you to peer entirely too deep into my psyche….

After a few days of pulling and combing and shedding, I went to my hairfresser and had my head shaved. I kept a bag of hair and a dear friend of mine put it into an encaustic art piece that hangs in my living room. (See my blog, “ I am not like I was before” https://jodeenrevere.wordpress.com)

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So, as I geared up to fo through this second round, I was secretly thrilled to go through the hair release again. I wanted to have that experience first and then shave my head. I didn’t want to skip any of the parts, and, well, I like it. It appeals to my delight in the sensory. I scare my friends.

On the day of my third treatment it was the full moon and my hair had just begun to release its hold on my scalp the day before. Of course I played with it all day. Observing the color, the texture. The shine of the silver and grey strands, the auburn/brunettey blondness of the bulk of it. Later that night I was getting ready to go to bed, but realized I had not yet seen the full moon and thought I would wait to see it rise.

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It was a perfectly still and warm night, right before we got the 30 degree plummet two days later. I walked outside in my bare feet, padding down the block, watching her slow ascent between the roof lines of the houses and the leafy trees. Breathing deeply of the late spring to summer air. Breathing in the transition fullness. Making my way back to my yard I stood in the grass, feeling the pulse of the earth underneath me and stood still as the moon rose into view. You could almost hear it move through the night sky. As I stood there in the moonlight, all of my witchy DNA snapped to attention and I did the most obvious normal thing. I began to walk the perimeter of my house and mark every tree and shrub with strands of my hair. Combing my hands through, taking a small handful and the gentle tug and release as the hair came out. I draped it over the tree branches, tucked it into the bushes, sprinkled it on the ground and in the flower beds. “This is my home. This is my place of healing and rebirth. I willingly relinquish this way of being for something new, clear and expansive. I say “yes” to the unknown.” All the way around the house I walked, talking quietly to myself leaving a trail behind me. Gifts of me to the night.

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I felt shifted that night. Ready for the next phase. Two days later, before I could look like a Barbie doll who had her hair done by someones sadistic little brother, I went in and shaved my head. The sense of lightness. I felt the last 6 years of my life with all of the over extension, emotional exhaustion, relationship turmoil and not feeling quite right in my body, slide off of me in a pool at my feet. Yes, I have it in a bag in my room and it shall be released into the wild. Duh.

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In many mystical traditions hair is thought to be a source of a persons power and strength. The longer the hair the greater the power. It is an antennae towards the heavens, connection to the ancestors, and a testament to your past. There is a certain duality in that idea (always intriguing) both the cumulative wisdom and foundation that we develop during our lives that we carry with us, as well as the weight, trauma and habitual patterns we drag around with us, that are stored in our cellular body, that are stored in our tissue, our hair.

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As the hair fell to floor I felt the heaviness fall away. Saw my self emerge, my light brighter, even more hi-def (as if that is possible, apparently it is) Although I love my long hair and I do derive a sense of power, my femininity and my sexuality from that expression, shaving my head holds all of the same intensity but from a different perspective. The power of not being stuck in your past, not dragging everything forward, but shrugging off a heavy cloak and stepping out naked into the world on a fresh path. Your past has helped inform who you and will forever be an integral part of your makeup, and now, you can move forward making different inspired choices, not patterned responses. The antennae is turned inward to listen, not outward be told.

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What if my DNA are being rewired through the chemo and I am being enhanced, upgraded for an entirely new chapter of my life? “I am not like I was before”, and why would I want to be the same person I was six years ago, or 10, or 20 or 30 or…..? I am being challenged to shift, to adapt, to see what’s next. When I am complete with my treatment, I will not go back to how things were before. It will be even better, and my life was pretty great before. I don’t know what that is, but it will be fresh and expansive and I am ready to start anew with my sleek aerodynamic self.

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and so dear readers, when almost last we met, I had received the letter in the mail stating that my biopsy from last july was…wait for it…wait for it….BENIGN…

had to, must be, no other option, this was a massive screw up on someone’s part. clerical error extrordinaire…no way that this could be true, right?

my daughter’s second response, after a long stunned silence, was to pick up her phone and google “ what is the average out of court settlement for medical malpractice…answer is …$450,000. that would work mom.” ah, the savvy youth…

as I opened this letter on a Friday evening, I had to sit with this over the weekend. I spoke to two people that are knowledgeable about such things and they both said get an attorney first of all and have them make the phone calls. I am in no way a litigious person, but for a screw up like this, I would follow this to the ends of the earth.

so, it is most interesting to note that I felt absolutely zero anger. none at all. I just kept laughing and shaking my head. seriously?! was the cosmic punch line to the last year of my life. Surprise! No cancer! and oh, no breast either, but hey, no cancer!

would I have traded this experience for anything? actually, no, I wouldn’t. it has changed me in remarkable ways, I have discovered strength I had no idea I posseesed and depths of despair I had no idea I contained. I dove deep into that abyss and swam back to the surface. over and over again. I am a hell of a diver.

I love my new body. no regrets. I started writing because of this.

but, what would I do with all of that  money if it were true? I found answers immediately. next to nothing in my life would change. I would buy a new car, one that I could road trip and camp in.  put my daughter thru college. keep teaching and doing massage and have the ability to offer services for free for those I need it. start planning more yoga trainings, massage trainings, workshops. my never ending schooling. take my mom and daughter to Hawaii. that’s about it. just keep living. I love what I do and have no interest in “retiring”.  I was seeing a “win/win” situation here.

spoke with an attorney on Monday, who quite simply said, “why don’t you just take the letter to your doctor when you go in for your chemo and ask him about it?” he seemed rather unconcerned with being paranoid of documents being altered, etc. I trust him. his wife went thru breast cancer 2 years ago. he knows. he’s lived this. there was nothing flippant about his response.

so I went in for my chemo on Tuesday whether I needed it or not… and spoke to my adorable oncologist. he was utterly apologetic, pulled up his reports on his computer and showed the discrepancy. his files say cancer. all of the other files say cancer. I spoke to the woman at the record library of the cancer center and she said that I had been the second phone call that day saying I had received a letter saying that the biopsy was benign, many months after the fact, when it was not. computer, clerical error. she was horrified and so apologetic.

and so all is well. I did have cancer and I won’t get a big check.

and I got my chemo, my last chemo, and apparently, I needed it.

so it was interesting to be tested in this way to see how I would respond to this possibility. everyone else around me freaked out. I, for once, did not. I would most certainly not shrug my shoulders and look the other way if it were true, I would make sure they were held accountable. but somehow I was able to sit with the idea of just accepting that truth (if it were) and knowing that I could do nothing about it but move forward. a place I have been utterly unable to get to regarding other things in my life. things I rail against daily in their unfairness. this was a pleasant change. I liked the way that this felt. would not have turned my nose up at the money though…

and so here I am. one day after the last chemo. sitting with that swirling whirlpool of liquid metal in my guts, skin crawling and moving towards the couch and the fireplace. to tuck in for one last hibernation. one final petite mort, and savor it, because i will hopefully never feel like this again, before the cocoon starts to ready for unfolding. i am ready.

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had my 3rd chemo on tuesday. my half way point. the last one went rather well. a 3 day slowing down, a deep crash that friday, a massage that night and i popped out the other side. the following two weeks i was full of energy, working out, teaching, working on massage clients. whew. so grateful.

so, here we go again. the initial day of  butterfly stomach, skin tingling, not altogether unpleasant. then the slow thick mildly underwater feeling. each day a bit heavier. thursday evening begins to feel anxious, teary, like you are falling. slowly falling. just endless falling.

friday morning i’ve hit the ground. splattered. and it is not a physical crash. no bone pain, no nausea, no fever. the chemo is doing this strange polar dance inside me. even as it is killing my cells, stopping my hair growth,  and pulling me deep under, it also is resurrecting every broken  piece of my emotional landscape and breathing new life into it. i am being held under water and made to look at every way i have ever betrayed myself . all of my bad judgement, all of my weaknesses, my faults, my inadequacies, and every way i have failed or been failed. and if i felt that i had been failed by someone else, surely it was really my fault. it was spectacular actually, like a train wreck.

i was an insane 6 year old child, screaming for someone to just love me and take care of me. to make it better. my dear friend stayed with me for a long time and then i knew i needed to call my mother. i hesitate to call her because i feel like i am way too much to deal with. that i will break her heart with my brokeness. that i scare her when i am like this and she does not know what to do with me.  i have always felt that i am too much to deal with. too big. too messy. too passionate. too fiery. too much.

i call my mother and she comes and holds me in her arms and i weep. i weep like my heart is breaking and it feels that it is. she holds me, and breathes with me and she does not “shush” me, or tell me to stop, or get myself together. she knows exactly what to do. she lets me cleanse myself. the healing power of salt water. i have always said that crying is my super power. lately i cannot imagine where these tears can possibly keep coming from.

eventually, i am done. i feel still and quiet. i actually have another friend who comes to get me and we go out to dinner and see a play. can’t imagine how i was able to do that, but i did, and it was nice to be out. by the end of the evening i was exhausted on every level. i slept deep.

the next morning was a new day. the storm had passed, but i saw things that had been uprooted by the tsunami, things i needed to clear away. things i needed to address and take care of.  and in that moment i begin to see this entire other level of clearing that chemo does. perhaps the deep emotional fragmentation is the real cancer and the lumps that show up are merely by products of that.

i am seeing this chemo as a tool to help pull up every emotional thing inside me that i need to heal. for me to pick up and handle each piece that gets blown to the surface and to look at it with new eyes, to turn it over in my hands and then to keep digging, because buried underneath all of that broken rubble is my long lost power.  the power to choose a different way and to not buy into my old outworn stories of lack and unworthiness.  to take care of myself . ME take care of myself.

i am not too much. i am a LOT, but i am not too much. i am just right.  this whole nightmare right now that feels like it is too much… maybe, somehow, it is just right too.

and now… “the hospital story”… (cue ominous organ music and thunder….)

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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.