Friday, December 16, 2011

one last time

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!

Saturday, June 25, 2011

Monday Morning

so quick update.... this week has been a whirlwind. i had my PET and CT scans last week, and it isn't what we were hoping for.

we chose R-EPOCH chemo, a more intense chemo, in hopes killing this thing off. and to avoid radiation.

well the tumor has shrunk, but the cancer has become more "active."

so dr. poisson suggests radiation. which nolan and i are very against. and we have been exploring all options.

the first two days after hearing this we have dove into all available treatments. traditional and non-traditional. we've been on the phone with survivors, clinics, and anyone else you can imagine.

cancer is a FULL time job. we are exhausted.

dr. poisson has been in contact with OHSU and their team of lymphoma specialist. i am meeting with dr. maziarz this next week. he is their stem cell transplant guru. he is very very very good. and so is his team. dr. maziarz would like me to get a biopsy of the mass to make sure it's where we think it is.

PET scans can be a little dishonest at times. so it could be better than we think, or worse. but either way the only way to be 100% sure is a biopsy. only i cannot do a needle biopsy like last time, that only produces a very small amount of tissue.

so monday morning i am going in for surgery. the whole put you under, deflate your lung, and take a huge (1in x 1in) chunk of this sucker. i should be able to come home wednesday. i don't have any details on the surgery yet.

in this whirlwind, i was not able to meet with the surgeon because time simply did not allow. but rest assured i am googling the heck out of him. and dr. poisson highly recommends him. so my fears have kinda been put to bay.

but if you know me, i like to know ALL the details, digest them, sleep on them.... so this is very hard for me. not meeting the doctor until the morning of my surgery? my whole body screams OUTRAGEOUS! but i don't have a lot of options right now, as this mass is a fast growing mass and time is of the essence. but we are doing everything to make sure i am getting the best care possible.

so we will have to wait and see what the biopsy shows. we will probably harvest stems cells no matter what and store them in the fridge (or freezer?)

and possibly do radiation.

ugh. i hate saying that. i do not want radiation. too many side effects

heart disease, heart attacks, lung cancer, lung problems, breast cancer just to name a few long term side effects. just doesn't sound appealing to me. but.... what other choice do i have? there are a couple clinical trials i have been looking into. but still.

i can only speculate at this point. we will  know more towards the end of next week.

Thursday, May 26, 2011

Last round!

so i am officially in for my LAST ROUND! i can say i am excited, yet scared. i know all to well what to expect over the next week or so. you know how they say 'ignorance is bliss', its true! i wish i knew what wasn't ahead for me the few days after chemo.

we came in yesterday, and lets just say i REALLY drug my feet getting here. i didn't pack the night before, or do any laundry. i just didn't want to think about it, so i ignored it. of course when i got up to pack that morning, it really put me in a pinch. but i took an extra long shower (which was not on schedule) and nolan had to remind me to get out. i stared working myself up into hysterics, and i wasn't even dressed. but i was nauseated, and i couldn't think, and i started crying. nolan had to sit me down and calm me down. he told me we will do just one thing at a time, lets start by getting you dressed. i couldn't even pick out an outfit, or i just didn't want to.... or a combination of both. but atlas, i am dressed and my suitcase it packed.

i normally make it on the road before i have a break down... round #5 i made it all the way to rogue river, and round #6 i made it to the first medford exit. and now, round #7 i wasn't even out of the house.

how can i knowingly put myself in a car and drive to a destination that i despise? to a place that makes me feel like crap. how can i knowingly put myself through this? literally one foot in front of the other. i am dubbing it the "drive of death." i feel like i am on death row, i just have such a heavy heart and i DO NOT want to be here.

on the positive side i talked with dr. poisson on tue. and explained some of my newer side effects. i am having a really hard time coming off of the prednisone. this last round i felt like i was going crazy, literally. i thought i was going to be locked up in a mental institution. i couldn't distinguish what was real, and what was not. i was having irrational anxiety, irrational thoughts, i could not rationalize anything. and i knew i couldn't, which made it worse. i was thinking that i was watching myself go crazy. this lasted for a full 4 days, and it was a full week before i started to even feel somewhat "normal"

during that week i decided i couldn't handle it mentally if i had to do it again, and i told nolan and myself that i was done. that i didn't need another round of chemo. if this was going to affect me mentally like this (at the time i felt it was permanent) i didn't need the extra "insurance" round. just to put in perspective how off i was, i actually considered going into the bathroom and pulling my PICC line out. no PICC = no chemo. thinking back, its crazy. but it made SO much sense to me at the time. i can't even describe how awful it was. i can handle the physical pain, but this mental crap..... man there is nothing to alleviate it.

so with that, dr. poisson is going to taper my prednisone for 5 days after we get out of the hospital. which should HOPEFULLY keep me from the dreaded "drop-off" and help me keep my sanity. also, i found out that the type of steroid (prednisone) that i am on does the opposite of what athletes take to bulk up. so they actually contribute to muscle loss. which explains SOOOO much, like the fact that if i squat down to pick something up, i can't get back up. i mean really, who can't bend down and stand back up? oh me! so it is comforting in a way to know its a side effect. i will just have to try and re-build all the muscles i have lost through this process.... oh joy.

the other thing that has been happening is that my eyes have been a bit blurry. i can't read anything far away. in the last couple of weeks i have really noticed it. and of course, it worried me. and of course, i felt like it was permanent (another reason i was not going to do my last round). who wants to loose their mind, along with any muscle mass, along with your eye sight! count me out. but guess what?! PREDNISONE changes your eye shape when you are on it for too long, and after time my eyes will return to normal. but really it changes the shape of my eye? come on!

so, i have concluded prednisone is EVIL, most of my major side effects stem from the stupid thing. and that i will never take it again. it's not a love/hate relationship, it's a hate relationship. prednisone can eat it. prednisone can die. prednisone can..... heck drop off the face of the earth :-D

Tuesday, April 19, 2011

Round #5

so i figured it was time for another update..... you think being in the hospital for 5 days i would be able to blog more.... but it is much more fun to watch movies and take naps.

i went in this last week for another CT and PET scan.

the CT was first, and the results showed that there is still a mass (and always will be) and it is about 5x6x7cm. sooo.... tennis ball-ish. it also showed that where the cancer was eating into my sternum and ribs has started to regenerate! so that is VERY exciting.... my bones healing while i am on chemo. i had been having some chest pain when i would try to lay on my stomach the last couple of months.... and it was because i was pretty much missing some bone. go figure....

anyways.... the bones in my chest are healing. and the CT also showed a gas pocket surrounding the mass. which from what i understand, is just that my organs don't hop right back into place. it takes time for my lungs and such to make themselves back at home.

next was the PET scan.... and can i just say how enjoyable they are?! not. soooooo i sweet talked my PA into giving me a valium beforehand. one of my side effects is restlesness, and laying perfectly still for 30min doesn't exactly work out so well.

they gave us a copy of the PET scan before we left.... and... well..... like they expect me NOT to look at it?! so we went home and popped the sucker into the computer to see what was going on.... i debated whether or not to do this, since i'm not exactly an expert at reading PET scans.... but i figured what the heck. i'm not going to wait 4 days to get the results.

and the PET scan looked clear from the images we saw. i knew not to expect "cancer free" but the difference between the two was DRASTIC. so we did a little pre-celebration and took a mini road trip :-P

so we had our appt with the dr. last tues and the regular PET looks clean, but the thermal(?) PET shows a trace outline of "activity" around the mass. so..... what does "activity" mean? good question. it could mean that there is still a small amount of cancer, or it could mean that my body is still processing the mass.

the truth is, there is no way to know.

so what do we do? i of course was hoping i was done (wishful thinking). the dr. recommended finishing the 2 insurance chemo rounds. so, who am i to argue with an expert? he said he was going to consult again with OHSU and wanted to get more opinions on my case.

the dr. chatted with the top lymphoma specialist at OHSU and he recommended doing 3 rounds and increasing the dosage by 20%. not exactly what i wanted to hear. but in the end its better safe than sorry. one more extra round, or a higher chance of relapsing.

i had to ask the dr. (or more like nolan did because i am chicken) what would happen if we didn't do anymore chemo. and he said he could almost guarantee the cancer would come back. if there is one cell left, it will come back, and come back with a vengeance. so there goes my "wishful thinking"

overall the dr. was happy with where we are. and so are we. we are ready for this to be over, but it is a process!

Monday, March 21, 2011

i've been bad....

i admit.... i have been horrible about blogging. i think i have a love/hate relationship with blogging.

it's not that i don't want to update everyone on how i am doing..... it's that i don't want to re-live what i am going through. which is what i do when i blog.

there is so much i could write about, since i haven't blogged in over a month. but, overall, i am doing well.

i have my good days and my bad days...... well, actually good weeks and bad weeks is more like it. the first  week after chemo is the hardest, and it gets better from there.

i go in for round 4 of chemo this wednesday. and after this round i go in for another PET scan. IF the PET scan is clear (meaning the cancer is gone) then i will have to do 2 more rounds. so we are hoping for a clean PET scan.

if the PET scan isn't clear, then i will do 2 more rounds, PET scan, and 2 more rounds.

from there we will discuss radiation. and hopefully (fingers crossed) we won't need to do it :-)

that is all for now.... it is my nap time :-D

Wednesday, February 9, 2011


today i am back in for round 2 of chemo. i thought i had another week left until i had to come back..... but nope. so last night was hard, i was just getting back to feeling "normal." i was planning on going for walks everyday. nolan and i had things planned, but the doc said, today. i had a little cry, and we scrambled to get everything together to make it over to medford this morning.

they started chemo a little late, so this might mean i'm in here for one more night..... we will see.

but i wanted to blog about love, and how this process has changed me.

the love for my husband has grown immensely these last couple of months. not because of the support he has given me (which he has) but because of the love i see in his eyes. its like this journey has brought us so much closer together, and it has barely begun. which is so exciting! i have a deeper love for him that i didn't think was possible. 

 i cannot express in words the love i feel for him right now, or how it has grown.  i wish i could eloquently put into words my love, our love. it may sound mushy, but it is my heart. he is my best friend. his sense of wisdom outstands me through this.  normal things that would tear people apart has strengthened us. my heart overflows when I think of my husband now, more so than ever. i feel like i’m dating my husband. that we are in a “honey-moon” stage. a honey-moon stage during cancer? what?

the day you hear you have cancer, and you go to lay down in bed that night and all you can do is smile and laugh with your husband, new level of love. we don't argue anymore, about anything. we sit and have the best conversations and laughter is our medicine. it's like we are new people. we have a new marriage. i told him the other day how much i love him and how i cannot express this love, that i want to marry him all over again when this comes to an end. i want to go on a trip when this is over and marry him all over again. just him and i on a beach. not a wedding. a marriage. it makes me smile.

 i feel like a new couple. i feel like this journey has strengthened and grown our marriage into something it would have never been without the cancer.

it's not that cancer is good for my life, but what is happening through the situation of cancer is a glorious opportunity. that we are grabbing hold of full-force. what was meant for harm, is being turned into good. and i receive all the goodness :-)

my love for the Lord has grown immensely also. i don't have any fear, and i don't question "why?" which can only be a blanket of peace from Him. i cannot explain the way that i feel wrapped in His arms at times. it is so relaxing, i feel like i can just fall asleep (with a smile on my face)

all of the junk in our lives have faded away. the little unimportant things that used to run our lives at times are gone. so all that's left is love for my husband, and my Savior. and the 3 together is a beautiful thing. i think it is the first time i have truly experienced this. and i am loving it!

every time i see my husband, i see him through new eyes. there are time we just lay in bed and stare at each other. i watch him when doesn't even know i'm looking, and i see this man that has grown and blossomed also from this experience.

nolan and i talk about not just wanting to survive this journey, we want to THRIVE. it overwhelms my heart at times. i really cannot put into words how i feel. how i feel that i have grown 5 years in theses 2 months. my husband told me the other day, he loves seeing me grow into this woman that he always knew i was. and i love coming out of my "shell."

i love the line from the book "crazy sexy cancer" where she says  "why, when we are challenged to survive, do we give ourselves permission to truly live?" enough said!! i want to truly live.

right now my worst days, are better than some people's good days. it blows my mind.

why does it take getting a diagnosis of "cancer" for us to wake up and start living our lives? it truly has opened my eyes and i will never be the same. beauty from ashes.... beauty from ashes

Saturday, February 5, 2011


i never thought i would say this..... but i am going bald at the ripe old age of 22. hair is everywhere. it even follows me like i can save it. hair in the bed, hair on a chair, hair on the floor, and don't forget the shower drain.... (sorry dad!)

i'm not sad to be rid of my hair..... i will be saving so much money on hair supplies;-)

but if it doesn't all fallout by tomorrow, i am shaving it. being proactive?

i know i will have mixed feelings about being bald, and i'm sure i'll cry here and there. but when i am going through a chemo treatment and i don't have to deal with my hair..... i will be smiling.

in fact i will probably feel sorry for everyone who has hair, they have to do it , wash it, dry it, style it.... and i just get to sit back and enjoy my baldness. and then a wonderful shampoo commercial will come on and i will probably sob like a baby.

which comes to crying..... man it has been happening a lot... for no reason. (well besides the whole cancer thing.) nolan posted some of my drugs earlier, which i take around the clock (gag me.) i mean really, i don't feel like waking up at 5am to take another pill. but they all have to be spread out, and ruin my life :-) but im sure they aren't helping me stay emotionally stable.

i have a nice gallon size baggie full of rx's that i take with me everywhere. because who knows when that nice alarm on my phone is going to tell me to take the next one. i probably look like a freak walking down the street (which i don't actually do) carrying a zip-lock bag full of pills. i'm sure i look like a creeper.

the first week after chemo was the hardest. physically and emotionally... i'm not sure why.... but it may be due to the fact that i still have poison in my system. i'm going to ask the doc about this before out next round..... which falls sometime around valentines day (ahhhhh)

but as of right now i am feeling good. and hopefully it stays this way. because i don't like blogging about my bad days (which is why there weren't any for awhile)