so when the word "trial" was again brought up, i knew in my gut that i wasn't interested. first of all it involves ultra sound guided needles as long as your arm going into my abdomen and injecting the various tumors directly followed by the toxic chemo cocktail i've already been sick on and at an even higher dosage. and this is a 12 week trial, so once a week someone would have to drive me two hours to this "treatment", and then two hours back. plus as part of the trial, you must submit to alot of testing. like a lab rat. and there is no guarantee. fuck that. i've been sick. i've been there and done that. i fucking had brain surgery. i've had 5 surgeries, radiation, and chemo. i've lost my thyroid in the process and gained 50lbs. i actually was ashamed of my weight gain and subsequent big girl panties, so much so that i was giving myself a hard time about being too fat to die, just let me live long enough to lose 10lbs before i die. i thought that. that is a sad state of affairs.
but mo discovered my hypothyroid condition and has since corrected it and i've lost 35lbs and haven't felt this good in years, fucking years. do you know how long that is to not feel well? let me tell you from first hand experience, it is mind numbingly long. it makes you crazy. it is a feeling i do not wish to endure for one more minute. and the idea of making myself sicker to buy time for the unknown future is not something i am willing to subject myself to. and i've arrived at this definitive choice through a lot of soul searching, discussions about dying, discussions about living, reading various books about dying and living, a lot of gazing out the window and meditating on what is important in life.
and what is important in life for me is to be able to live life without pain and fear. life for me is having the energy and stamina, hell the inclination to eat, drink, fuck my husband, travel, garden, walk our dog, love my friends and family by visiting them, not the other way around where folks visit and i am too sick to get off the blue lagoon, and through no fault of the visitor i feel as if i am an exhibit at the zoo and people come and gaze at me through the bars, those bars metaphorically being the barrier that separates life from death, and me being on the death side. then unconsciously the visitor inevitably conveys the cancer pity face. i can't take that face anymore.
this is where i've spent the past two years, and unlike brooke shields i am not frolicking in the surf and fruitfully fucking a sandy blonde boy who is a shitty actor. nope my blue lagoon is a sofa. and i want off and you know what? i got off the couch.
when i heard the word trial again, i knew the jig was up. i knew that i haven't felt this good in years and that i had two weeks to begin making my farewell rounds. my husband heard me out and we went to california. the main reason for the trip to the coast being that my sister and her family had just moved to ventura from valley city, north dakota. ventura is just south of santa barbara. it is known as the "riviera of the u.s." quite the opposite of north dakota. but i also got to see a couple of very old and dear friends too, and all the wonderful mini-me's they've created.
the time i got to spend with everyone was life affirming and the ocean, ahh the ocean, transformative. but i will get back to that. after three days with my sister and her family it was time to say goodbye, and believe me i didn't want to. but i did. but not before i rode bikes with my niece to the beach to greet the morning:
we said goodbye and needless to say i was catatonic afterwards. i am crying now remembering it. marty just drove, we ended up in the hills in ojai at a county park. we didn't speak. we then found a room along the coast and the next morning i awoke to the fog horn sounding and dressed and took myself down to the beach. i was transfixed by the sound and smell and feel of the ocean. goddamn that sound and feel of the water is the best treatment i've had in years. i've never in recent memory felt better than i did next to the ocean.
we returned around midnight exactly one week after we left, and the next morning my dad picked me up to take me to iowa city to have a ct scan and consult with mo and chemo if it warranted. i wanted to postpone the inevitable, deny that the tumors were unaffected by the current treatment so i wrestled with canceling the appointment. i was travel weary physically and mentally. i was steeling myself for the bad news and then prepared to say no to the trial.
what i was not prepared for was this: "your scan looks great, the tumors are shrinking, we will continue with chemo every two weeks, which you can do in des moines, just come back here for pictures in three months".
i was speechless. except for "what about the new growths?" he said those are old growths that we didn't pick up because they were lost in belly fat. and we can tell that they've been there and are shrinking because of the scar tissue left behind after the tumor shrinks. every tumor has shrunk by 50% since my last scan. i said "so what i thought was a new tumor, and you thought was a new tumor too was in fact an old tumor but palpable because i had lost so much weight?" it was as if i had just seen my vagina for the first time after weight loss surgery.
are you fucking kidding me? i was too fat to notice a tumor? i shared with the docs that i had just returned from a farewell tour. then i cried. then my dad squeezed my knee and with tears in his eyes he said "this is such great news". mo said i have more trips ahead of me and they are just trips, not farewell trips.
trips shmips. i wanna move to the coast. i want to be in a place that has the ocean, medical marijuana and is a right to die state. and i think my husband is interested in helping us realize that goal. this trip to the west coast to see friends and family offered up more than just seeing those that i love. it granted me perspective on my life, which is i do not wish to die in my home in des moines.
the prospect of hospicing at our current address depresses me. and it is because that is what i've already been doing for the past two years, i've been on the blue lagoon in my own hospice, and i've got to get the fuck out of here. and so i will end this post where i began, i've been here before. good news followed by bad news, and i know i am living with a terminal disease. but the operative word here now is living. and i wish to be able to start living a new chapter near an actual blue lagoon. stay tuned.
that's my husband, muy guapo for soon to be 54 years old..............
