“i am homesick for a place that I am not sure even exists. a place where my heart is full, my body loved, and my soul understood.”
it is breast cancer awareness month. you know what that means…this is gonna be a long one! breast cancer is why i am taking this trip. i must acknowledge that and talk about what having breast cancer means to me, hence the title of this blog entry…she flies by her own wings. i don’t want to talk about the culture, the cure, the pink, the blessings etc. i just want to write about what it means to me today, good and not so good.
my mind feels tired. my body too. I think knowing this trip is coming to a ridiculously fast end and knowing why i am going home, is weighing heavy. today, because of cancer, breast cancer, these are all the things that i thought about, on this cloudy, windy, rainy day in colorado, on my cancercation. i think about my family history and my lack of genetic link and the disbelief. but how can we truly know? i have a lot of cancer in my family. Brain, breast, prostate, colon, skin. i think about my own genes and what they’re doing in there and the ironic link to those types of cancers with this particular genetic mutation, which they’re not sure i have but maybe but probably not. i think about the decisions and choices i have to make, had to make and the consequences. i am not invincible and everyday i am readjusting to a new life after treatment, emotionally and physically.
i look back at journal entries from this month last year, the last month of my treatment. i was half way through 5x a week radiation treatments. i was exhausted. i was struggling emotionally and physically. my journal entries were short and sad. On this day last year I said, “I feel bad all the time now.” last year on this day i had more genetic testing. last year on this day it rained. i am emotional looking back at these entries.
i can see it now, the gradual decline. everything dr. r warned me about in terms of working, not resting enough blah blah, happened. she warned me about the effect and toll treatment would take at the end. in the moment i always thought it cant get any worse than this, but it always did. it was the emotional effect from treatment that came out of nowhere. within 2 weeks of finishing almost an entire year of treatment, i was diagnosed with ptsd. i did not see that coming. i laughed at it but it is a very real thing that happens. like tignotaro makes jokes about in her documentary..”god can’t give you more than you can handle…” as a side note, 3 weeks before my diagnosis, right around christmas, the pipes in my home burst and destroyed a lot.
so, for ending treatment as a gift to myself last november i rented a cabin in the catskills. the day after i arrived there, i fell apart and i had absolutely no idea why and i couldn’t make it stop. everyone kept saying “aren’t you so excited to get back to normal?” i wanted to cry every time someone asked me this. i think there are some that assume that after treatment is over “normal” comes back immediately and I’m sure it does for a lot of people. but it didn’t for me and i didn’t want it to. i wasn’t happy in that normal and i felt more alone than i ever had in my whole life.
dr. r was right. my world came crashing down. I had hit bottom. i accepted it, eventually, and worked hard to recognize it, acknowledge it, work through it and move forward, some days. to understand where the emotions were coming from, my therapist, my amazingly wonderful therapist, reminds me that i have been through a ‘trauma, an assault’, on my body, my mind. i am grieving loss and i feel guilt. and i now know that i am not alone which is an incredible relief.
i had people in my life that i didn’t even know sending me gifts and notes of support and baking me blondies every week. there were so many of you that helped me in hard moments with just a smile. just to see the care in your eyes was enough to brighten my dark days. even for a quick moment. people who cared for me instantly, like my oncology team, other doctors, family and old friends. i have a few tremendously important people in my life. each one of you giving me a different kind of support and i love you all so much. as much as this month is about breast cancer awareness for me, it’s about recognizing you. i would not be here, this happy again, without any of you.
there’s another side of what becomes of personal relationships, while having cancer. some people start to fade away, some people come back and forth. it wasn’t until after treatment was over that i recognized that this was happening. at first i felt hurt and angry and disappointed and confused. but i have to remember that i truly believe that everyone comes into your life for a reason, no matter how long or short the duration of their stay.
i realized that people, even me, have voids that they need to fill. a cancerous friend fills a lot of voids. but then when you’re not so cancerous, those voids aren’t for you anymore. if this makes any sense at all. i really hope it does. i cant remember where i read this recently but i wrote it down, “be willing to go alone sometimes. not everyone who started with you will finish with you. and that’s ok.” this is very true of having cancer and the change that occurred in my life with personal relationships, friends, family.
no wonder i feel so fatigued, body and soul, still. maybe it will be like this for awhile. I’m going to assume that my therapist will tell me this is all very normal. she told me there are people that experience physical illness, just driving by the cancer center. i believe it, even though i love everyone in there.
so anyways, a few days ago when i went to zion national park, i thought, screw it, I’m gonna see if this works. I’ve heard it does sometimes. i drive up to the gate and the park ranger says that’ll be $30.00. And i say, it is breast cancer awareness month and i have breast cancer. can i have a discount? he didn’t even chuckle, despite my big smile! maybe i am not funny. he said do you have a fourth grader with you? i laughed and said no because i knew where this was headed and i knew i was gonna want to punch the guy so hurry up and take my $30 and fuck off. apparently i could have gotten a discount if i had a 4th grader in the car. i think of tig notaro in this moment. her comedy brings me relief, a lot. her ability to make humor from our disease, i am so grateful for. watch her documentary on netflix, please.
hurricane, utah and i got off to a rough start. i say that being presently in colorado, having cut my trip to utah a few days short. the owner of the zion rental is a bit off and has changed her pet policies recently. let me mention she did not communicate those changes with me, so long story short, i decided to leave hurricane, utah early and just get to colorado. it was bound to happen sooner or later, a bit of drama. again, is this because of the salt or the black cat? so on the way out, i let oskar eat a bunch of her pretty green grass and barf on the rug. oops..
with my all too short 2 days in utah i went for a drive up to the kolob reservoir and spent a day at zion national park. i love the landscape of southern utah. at the top of the reservoir it feels and looks like new england, like home. the leaves are changing. at the bottom, it is red canyons and open green land. it is so incredibly beautiful that i actually looked online at land for sale when i got back to the crazy lady’s house. the land up there is everything i always wanted. but i have to mention, as i think i have in every post, these roads are fucking terrifying.
zion was impressive. zion was crowded. zion was $30.
on my drive to colorado i listen to stevie nicks and i hear her sing “sometimes it’s a bitch, sometimes it’s a breeze…” this makes me laugh and i say “amen”. i drive the scenic road outside bryce canyon and i wish i could have figured out more time there. bryce has a special feeling to me.
i think about this trip and its purpose and the pressure i was putting on myself, almost unknowingly, to “figure things out”. have i figured out the rest of my life or unlock all of my life’s mysteries? nope. but i have seen incredible beauty everyday, something i didn’t see a year ago. i have a better idea of things that i value in this life, things that are important to me and the way i want to live. i always wanted these things but now i know i want them even more.
there is a lingering decision and issue resulting from having breast cancer that i am presently struggling with immensely. i guess to some it would be a private issue, but when you have cancer it’s hard for things to remain private. and i totally welcome feedback. during my bilateral mastectomy last year i received immediate reconstruction. meaning i went to sleep and they slashed off my old parts and implanted new parts, all in one go! at the time i was grateful that this was an option, as many others do not have the same. there was no time then to think, to consider how i would really feel about ‘them’. at the time, i thought or didn’t think that i had an emotional connection to my breasts. i was always one of the ones who would say, “someday ill get a lift!” now i was getting that, sort of.
i had problems with ‘them’ from day one. i have not grown to love them. in fact my body even kicked one out for awhile. 6 weeks of antibiotics later and my implant won the battle. but a year later the damage of that fight is clear and i need one new implant. i am conscious of ‘them’ all the time. i never feel comfortable and i am literally numb from my chest to the middle of my back. i am contemplating and have been contemplating removing them all together. i would have no breasts. there is a huge part of me that wants this relief. but my surgeons feel as though i should give it a shot with a new one and then see how i feel. i have decided to do this but believe with every bit of me that i wont feel 100% secure with this choice. so i continue to think, continue to read, continue to make decisions that are best for me.
the other issue that weighs heavily is removing my ovaries and the treatment related to that for 7-10 years still. After my mastectomy but before chemo started i met with another oncologist who asked me questions i was not prepared to answer. the issue of motherhood hadn’t really come up yet and it should have before that moment. if i desired to ever have a child of my own i had to make the decision to harvest eggs before chemo. there were so many factors i had to think about in a 30 minute consultation. if i harvest eggs, realistically the chances they will ever take, are slim. if i harvest eggs i have to take hormones. hormones feed my cancer. if i want to harvest eggs the chemo has to wait. if i want to harvest eggs i need another surgery. I’m sorry, i just found out i have aggressive breast cancer and it spread into my lymph nodes and now i have to decide if i want to be a mother?
no. the answer is no. why, for me, would i ever produce a child of my own? so no, i didn’t harvest eggs, i will never have a child of my own. i could always adopt but feel like that would be a pretty stupid move too. so ill probably just have dogs. i really hope someday to have 2 horses. this would be a dream. i have made peace with not being a mother to a child.
in my new ‘normal’, some days i am fantastic and some days I am a hot mess. some days i am so overwhelmed with the blessing of this trip and some days I am overwhelmed over why this trip is even happening. some days i stay in that place and struggle to get out. some days i hike up a mountain or large hill. some days i stay in my pajamas and read all day in a rocking chair. i have been letting my soul feel what it needs to and to experience what i need to. some days are just easier to place one foot in front of the other.
the other night when i arrived in colorado, i saw robert frost’s Anthology of Poems on the coffee table. i was curious what poem i would open up to and this was it:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
Goodnight sweet world and to my cancerful family…