wow. it has been almost 6 months since i have posted on here. and hopefully, this will be the last time. i got really sick of blogging, and even the thought of blogging. but i was talking with my good sis-in-law rachel, and she mentioned it might be good to let people know how everything turned out. so here it is...
the last time i blogged it was right before my surgery.
surgery went well, i was sore for a few weeks but it wasn't too bad. i celebrated my 23rd birthday in bed, on pain meds. and i now have 3 awesome scars on my side. they actually line up nicely with my ribs, and would make an epic tattoo someday. i'm still looking at designs, but i would love to get a tattoo there and incorporate them.
a few days after my surgery we had to do a meet-n-greet with the radiologist. the results from the biopsy were back. i was really nervous. really nervous. but the biopsy came back clean! c-l-e-a-n. i was so excited. i figured this meant i didn't have to do radiation. err.....
i'm going to side-step here. dr. poisson had a conference call with the OHSU team and they decided that it wasn't smart to opt out of radiation. this doesn't even make sense. i had a clean biopsy. the tumor does not show any traces of cancer! BUT if there is even one cell of cancer left, it will come back with a vengeance. and will probably not respond to chemo.
so this is why we meet again with the radiologist. nolan and i were trying to decide if we even wanted to go this route, if we wanted to follow doctors orders, or veer away. the doctor went through and explained radiation from front to back. he was drawing a chart of the radiation waves, when he mentioned something called proton therapy. and he stopped and said it may be a good option for me. only the nearest proton therapy machine is in LA.
different state. that's a problem. would insurance cover? so we dive into researching proton therapy. which, briefly, is a type of radiation. but it is much more precise, and with it being much more precise they can deliver a higher dose of radiation without affecting surrounding tissue. sounds perfect right?
so begins the insurance battle. and, it was a battle. in the end, insurance won. they knew my case was time-sensitive and they used that against me. if it wouldn't have been time-sensitive i know for a fact we would have won. it came down to money also, as always.
but it gives me comfort knowing that i was the biggest thorn in their foot. they tried to make me go away, they tried to sweep me under the rug. but we didn't let them.
after many tears, and many appeals, and many late nights, the window of opportunity closed and i had to throw in the towel.
so we proceeded to move forward with radiation. which i became at peace with. i knew this therapy was saving my life, even if it might cause some slight damage. you have to do what you have to do.
so i started 5 weeks of radiation. 25 sessions total. and i got my first tattoo. 3 to be exact. it wasn't as glamorous as i had thought it would be ;-) but i guess laying on a hospital bed with someone putting a drop of ink on you then poking you with a syringe needle isn't your typical tattoo experience.
i also had a kidney stone during this time. yeah. wow. i'm ready for anything.
i was planning on starting school in september, about a week after i finished radiation. but i was unable to do that. my body wasn't ready. and neither was my hair ;-) but really, i was just too fatigued. i needed to take some more time and recover. so i postponed school until november.
i am now in my 3rd week of school. it is different being back. bittersweet. the class i originally started with graduated last night. i am so excited for them, but i wish i was there with them. but i am happy to be back. it is amazing what can happen in a year. this time last year i was going home because i was so sick, and unknowingly moving back.
looking back, this has been a year. a lot of growing. a lot of crying. but in the end, i am a better person. i know that sounds cliche, but who cares. i have learned more about myself, more about my husband, than i could have in 5 years. i now have a better understanding of who i am. so, i wouldn't take back this year. even though i never want to re-live it.
i am now on a 3-month check up with poisson. which will probably continue for the next year. we will then move to 6 month check ups, and eventually yearly check ups. we won't be doing anymore scans. he says i have been exposed to enough radiation, and if it comes back, i will know before a scan will. he has never had anyone catch a re-occurrence by having annual scans. he said that every person walks back into his office and tells him that it is back. so i am trusting my body.
i also want to thank everyone that has supported us during this journey. there are too many to name. but you did not go unnoticed. the support i received was AMAZING. from people dropping off gift baskets, and gift cards, to clothes, to money, to cooking food, to sending up prayers, to offering advice, to giving emotional support, to sending hats, to sending wigs, to making shirts, to giving us "normal time", i could go on forever... i apologize that i was not able to get thank-you notes out. it was something that i had hoped to do, to thank everyone individually. but, you know who you are. i could not have done this without you. so, thank you!
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