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

love


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

baldy

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)

Systems, Simplicity, Organic, Trials and Glory

Nolan here again. Up till 3 am conversing and mulling over things with the Father. Here are my thoughts for tonight and a good feel on where things are with Aimee, thrown in with a little Nolan flavor. Hope you enjoy, and remember, Jesus stirred things up and offended people way before I ever did. ;-) Love you all...


It amazes me that there is a switch inside of us that can only be turned on during the toughest of trials. There are things to discover and doors to unlock that cannot be unlock without the investment of a trial. The bigger the door, the greater the incite, the bigger the treasure, the bigger the trial. It seems like the biggest doors are the ones lowest to the ground. The greatest incites and the most well hidden. The biggest treasures are at the greatest depths of the deepest oceans. The biggest trials are set aside for the greatest of men.


Despite what you have understood or been told, God wants you to be great, He has a Glory that He wants you to enjoy with Him.  John 17:22-'The glory which you have given me I have given to them, that they may be one even as we are one.' God has given us a Glory to embellish in for the purpose of becoming more at one with each other and Him.


So we understand that trials and glory are events and pieces of His Kingdom that He has for us here on Earth.


So I am going through a trail with my wife. She has cancer and I have just had a knee surgery. We are in a desperate situation, which is perfect. I've always thought the perfect places for rain storms are the deserts of thirsty people. So I believe God is pouring out on us right now. These trials are being used by Him and now have a Kingdom purpose. Satan fired an arrow and now it is backfiring because 20 are being fired back, Ha!


So here is what he's pouring out currently. His Glory is something that was poured out on the Son and then poured out on Us for the purpose of bringing unity, oneness. Closer to each other and Him at the same time. Equal and the same. We can't have one without the other.


There is also a nature of Himself He is revealing of His unique originality. The way He is, His plans, His nature, His characteristics, His Church, His people... it's all an original idea that has never changed.
This will all come together eventually, stay with it.
As my wife battles cancer I am reading a ton. I'm becoming a full time student of Large BCell Non-Hodgkins Lymphoma. I could tell you all about it. Where it comes from, what they think causes it, what the common treatments are, how it works, symptoms, the number of people diagnosed every year with it. I'm officially schooled on the cancer.
What I'm also discovering is that, this sucks, but even Cancer falls into the system. The diagnosing of it and the treatment of it is a business. (Lots of controversy surrounding this topic so forgive me, or forgive yourself if you disagree lol ;])
Pharmaceutical companies, Doctors, Hospitals, Nurses, Scientists, all make more money as long as cancer exists. We get cancer, the system makes Millions... Billions... Maybe Trillions worldwide. 
Here is what we also know. If we have treatments that are Organic, Vitamin based, Herbal based, this system loses a lot of money!! There is no money for anyone in the Organic, Vitamin, Naturalpathic, herbal healing methods. It is so cheep to get a vitamin, grow an herb, or drink a tea. It cost lots of money for a pil or a shot.
What I am finding also is that these natural methods are often demonized. 
Aimee is currently on 7 medicines. Compazine, Klor Con, Vicodin, clarithromycin, Fluconazole, Adivan, and Zofran. These medicines help battle the side effects of Chemotherapy. Other drugs help battle the side effects of the drugs that fight the side effects of the Chemo. This can go on and on and go pretty deep. What she is battling is Nausea, Loss of Appetite, Weight loss,  Sleepless nights, and body pains mainly. These drugs help that, kindof. So ready for controversy? One of these 7 pills, Compazine, has these side effects:

Blurred vision; chills; constipation; dizziness; drowsiness; dry mouth; jitteriness; nasal congestion; sleeplessness.

Contact doctor right away if any of these extreme side effects occur:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); agitation; altered mental abilities, including lack of response to your surroundings; changes in breasts; changes in menstrual period; changes in vision; difficulty swallowing; drooling; excessive sweating; fever; inability to move eyes; increased body heat; involuntary movements of tongue, face, mouth, or jaw (eg, protrusion of tongue, puffing of cheeks, puckering of mouth, chewing movements); irregular or fast heartbeat; mask-like face; muscle spasms of face, neck, or back; muscle stiffness; prolonged or painful erection; restlessness; rigid muscles; shuffling walk; sore throat; tension in legs; tremors; twitching or twisting movements; unusual eye movements; weakness of arms or legs; yellowing of the skin or eyes.

Ok here is the controversy. What one natural herb could replace most of these medicines. What natural herb can be taken that has Zero recorded deaths caused by the herb itself? What natural Herb helps fight off Nausea, Weight loss, decreased appetite, sleepless nights and body pains? You guessed it, the all so popular, often abused, Medical Marijuana. It's politically a no-no, religiously a no-no, and a money making no-no. Now I've been against it my whole life. Never tried it, only seen it one time, hated it and when people smoked it I strongly, strongly judged them. But this is shocking to me. My wife can take all these pills with side effects from here to the moon, or she can take a Medical Marijuana pill and have the one side effect of being a little floaty and getting the munchies. Ha. Please put aside prior judgements and viewpoints on this and read that again. She can take a single Medical Marijuana pill and have the side effects virtually done away with. Done. Gone. But our systems makes this a hugely ostracized option. I have made this a non-option. I have said, give her whatever Drugs she needs, she will not be using pot. Reality check... GOD MADE MARIJUANA!!! Oops.. Hmmm... Now it is smoked and abused, but it doesn't have to be.

At multiple points we have also been told by multiple nurses and doctors that it is dangerous to take vitamins or supplements while on Chemo. We've been told to be careful with the vitamins we take as they could kill Aimee. 'Vitamins can be deadly things' Reality check: In the past 23 years, 8 deaths have occurred on the speculation that the vitamins killed the patient. And all 8 of those cases cannot be proven and are based upon an educated guesses and speculation. Yet, 106,000 people died due to medicine that was correctly prescribed and correctly taken by the patient...LAST YEAR!
Would someone please slap me in the face and repeat that. Did I just miss something? SLAP! Ok nope, still there. I didn't miss anything. 
Here is the problem. There is no money to be made in eating RAW veggies, fruits, juicing, smoothies, organic, herbal, hippy lifestyles. (If you think this is all a lifestyle thing and Im a long haired hippy, well, my wife and I are BIC shaving our heads on Sunday, so there goes that theory.) But that's the truth. I asked one question with a nurse about food and nutrition and the statement came back at me, 'Oh, you're one of those guys. Long haired, nutritional, hippy gurus.' I felt like responding with, 'You're damn right I'm one of those guys!" 
The fact of the matter is, this isn't the doctor or nurse's fault. An average Medicinal Doctor goes through 10-12 years of schooling. In those years, our system makes the student take A COMBINED ONE SEMESTER OF NUTRITION. Again, kick me in between my legs, clear my eyes and let me read that again. Op, no change. That is outrageous, infuriating almost! But we don't hate the Doctors, we hate the Cancer. The priority is a cancer free wife and a body that won't allow it to come back, EVER!


We are dealing with the health side of this but here is what I am getting to, bringing it all back together now.
God is into simplicity. God is not into systems. God is into Organic. He is not so much into man made things (i.e.; drugs, institutions, religion...).

This is displayed not only in our Community but in the way we do Church. The idea should be that the Church gathers, we dont gather at Church. Life isn't about showing up at some service to download all you need in life and then trying to go out and live it out. Life is about constantly being under that faucet of downloads from the Father and constantly living it out. Life isn't about where one man stands on Medical Marijuana, where one woman sits on the issue of abortion, where one man stands on His eternal view of the homosexual community. God has answers for all those things, but He hates religion more than all of them combined. The Religious System excommunicates the Marijuana user. The Religious System makes abortion a salvational issue. The Religious System condemns the homosexual and expresses God's hatred for the homosexual, when God actually LOVES the homosexual, but only hates homosexuality.
Life is about unity, doing life together, being involved in a constant Kingdom download. Choosing to do life with a group of people called the church. It's not about being married in temples or Churches. It's not about your willingness and dedication to show up and listen to someone talk and worship in an expressive way with a band and preacher on a stage. It is about simple, organic, easily duplicatable ways of living a life as a Christian, or a Believer, or a Jesus Freak, whatever you want to call it. This thing they used to call 'The Way', it used to look a bit different than the way we are doing it now. In fact, it looked A LOT different. And though it may not be popular or financial acceptable for a lot of people at this point, an organic expression of this Church might be something this world needs more than anything! The side effects could all be cured with this one change.

Sunday, January 23, 2011

Address

Nolan here again. There are people asking for addresses to send or drop things off for Aimee. If you want to mail something, send it to 1203 Washington Blvd. If you want to drop something by, take it to my parents house at 1242 NW Salisbury Dr. Both homes are in Grants Pass OR 97526. That's all. Thanks you all for your love and support.
Nolan Morgan

breathing a little deeper

so its been awhile since i have been able to blog, and i don't know how much time i have today. so this may be short.

i have to get a new picc line today, the one i have is failing. it is right in the crook of my elbow, and i can't immobilize my right arm (i am right handed after all!) also they do not like the "type" of picc that was inserted. so i will be getting a new type.

they have me on so many fluids right now that i gained 12lbs yesterday (WHOA!) i woke up and my face looks i got stung by a bee (and no, i will not be posting a picture of this)

so they gave me a drug in which i will be peeing like crazy to try and get some of this excess fluid out of my body. i guess this is why they have a sign outside my door saying "weigh everyday"

today is day 3 of chemo. and i am handling it well. tomorrow is when they add two extra drugs to my chemo that are a lot more intense. they can have some scary side effects, but they will be monitoring me very closely.

the only stomach problems i am having are from the steroids. which is also adding to my puffy face. i am NOT a fan. the steroids release extra stomach acid, so it isn't nausea, just upset stomach. which they have given me something for. the chemo really wears me out, i keep asking Nolan, 'who parked the truck on my face.'The steroids cause my whole face including my eyes to become really heavy. i fall asleep very often. on a positive note, the steroids make be really chatty.... it is quite funny.

the day i was admitted i had my PET scan, which showed that the cancer hasn't spread anywhere else. and my bone marrow biopsy came back negative!! so, all good news! i am officially diagnosed as stage 2B. the doctor said he couldn't justify putting me at stage one because the mass is just so stinking big! but i am happy with this diagnosis.

this is going to be a whole lifestyle change. asking everyone who see's me to first come in and wash their hands/ or use purell. asking people to remove their shoes. i can't be around plants, or fresh cut flowers. even house plants. because of the bacteria in the soil. if i cannot cook and peel a fruit or vegetable, i am not supposed to eat it until we know my white blood cell count is sufficient.

but everything is going well. on another positive note it seems that the mass is already getting smaller. this does not effect the fact that I have a long, difficult road ahead, but i am breathing better already. i don't sound like farm animal every time i take in a breath. i can't take a full deep breath yet, but i will soon :-)

will update again when i have more time...

Saturday, January 22, 2011

catching up...

Aimee has asked me to blog for her to give everyone an update, she hasn't been up to it. I get to write what I want, so i'll get right into it...

When you are told you have Cancer, it is something you never prepare to hear. She had a good cry when the news first broke, but even then she waited until we were alone. Since then there have been very few tears shed on her part. She is a Champion! She has absolutely come alive since being diagnosed with this Cancer. There have been painful parts, sad moments, and rough patches. Each moment is one that is lathered in fear. The fear seems to be about as avoidable as being a large brick wall sitting in the way of a wrecking ball. But Aimee doesn't like fear and it's not that I see her running away to avoid the fear. She conquers the fear the only way you can conquer fear...

In the wild, a pack of Lions will hunt down a prey and often use a unique technique. The oldest male, or king of the herd is usually the least agile and most vulnerable of the pack. What he will do is track around one side of a prey while the rest of the pack goes around the other side. The oldest Lion will purposefully step out with a roar and scare the herd (the prey) away from where he is. In doing this the prey will out of fear run away from the roar and right into the young agile pack of Lions waiting to devour.
The only way to escape death is to run towards the roar. If the pack resists the natural instinct of running away from the roar and instead running at it, they will survive. The picture is clear.

1 Peter 5:8; your adversary the devil, as a roaring Lion, walketh about, seeking whom he may devour.

My wife has chosen not to run away in fear. A roaring Lion, with the voice of Cancer has found its way into my wife's life. Not because she has allowed it and not because she did anything wrong. But only because the enemy has seen her as good prey. So instead of running right into his plans in panic she has chosen to face the fear head on run at the fear. She is being victorious and will continue to be victorious until this roaring Lion is fully destroyed.

I am getting to write this blog so I want to express to the greatest degree of how impressed I have been with her. Her toughness and her fight is inspiring. She continues to be lighthearted and incredibly kind to everyone around. She is eating well and started Chemo on Friday at 10 am. We have been in the hospital since Wednesday. We are not having any visitors except direct family at this time. Aimee will continue her blogging very soon that will include her direct experience full of all her details that we enjoy and that she expresses so well.

She is too modest and giving to tell any one her real needs, except me. So I will list them because I know she never will :-) And then I will make sure I post this before she has anytime to edit it ;) She's sleeping anyways.
We continue to have people ask us if there is anything they can do and people telling us to call if we need anything. Well here is how you can help her and make her feel good :-D

Alex Heater made Aimee an amazing hospital gown for her trips here to the hospital. It blessed Aimee big time that Alex took time to personally make Aimee a gown to make her more comfortable. Any gifts of time you want to give in making Aimee something will bless her in ways you wouldn't understand.

We have had some family get her some clothes. Aimee has lost a lot of weight! She has a 5 or 6 pound mass in her chest. The weight of that mass is keeping her from weighing in the teens, that is below 120 lbs. So, clothes don't fit really well anymore for my sweet girl. If you know her well and know what she likes, get her some clothes. If you don't know her style and what will make her comfortable, get her a little gift certificate for Aeropostale, or Victoria's secret, or a certificate for a place online where she can order something. Going to Ross, or the Mall isn't something she can mustard up enough energy to go and do.  She needs to be comfortable and feel beautiful which is important. And right now, a lot of her clothes don't fit her skinny body lol

The other purchase or thing you could make her would be something nice for her to wear for when she goes bald, which is predicted for around the first week of February. There is some really goofy/bad stuff online, so any creative ideas, or beanies/ scarves would be a blessing.

Lastly, what she continues to need is prayer support. This unseen help that goes a long, long way. If you have been praying for strength, for peace or for the gift of laughter, know that your prayers have been answered. Please continue to pray.

She will be on again soon. Feel free to pass on this blog or any of Aimee's info onto anyone you see fit. Blessings to all of you.

Nolan Morgan

Friday, January 21, 2011

(Aimee started this blog a few days ago, but never finished)


so tomorrow i start chemo. but let's start with today....

i had a CT w/ contrast at 6:45am. i love waking up early (not!) i had to drink 2 bottles of glue-like stuff that tasted like perfume. one bottle the night before, 1/2 a bottle at 5am, the other 1/2 at 6am. thank you nolan for waking up and preparing it for me :-) what would i do without him??

and of course they gave me another glass of it when i showed up at the hospital! just when i thought i was done with the glue...

CT went great, then we went over to get an echo for my heart.

next stop, dr. poisson's office. whew, what a day. and all before 9:30!

yesterday, i spent 3 hours trying to get a PICC line inserted, but to no avail.... bummer. means i will have to have a radiologist do it tomorrow. i'm sure i will blog about this 3 hour experience in the future because it was not fun. but it is for another day. 

Sunday, January 16, 2011

overwhelmed

today.... i am feeling overwhelmed. i feel like there is so much to do and not enough time. i need more time. i feel like my life has been thrown into a blender and set on "high"

all i want is a pause button. to collect my thoughts, to line up all my appointments, to figure out what i need to do my last few "free" days. i'm ready to start this, i just want one more day.

yesterday, the dr called and said he really couldn't wait for the bone marrow test. and asked me if i could be a his office at noon. well... it was already 10:30 and i woke up at 10:29. so for someone using only one lung, it didn't leave me a lot of time. but we made it! i found out that the procedure was done during the doctors lunch time. that is how bad they wanted it done.

it was maybe the most painful thing i have ever experienced. first of all, i was not emotionally prepared for it. which if you know me, i have to prepare for everything. one hour was not enough "prep" for me. getting a GIANT needle twisted into your back over and over again was not my favorite.

luckily, nolan let me hold his hands during the whole thing. and, yes, his hands are still fully functional after that :-) he talked me through the whole thing. he wiped my tears, repeatedly. and held my tissues for me when i had to blow my nose. he held himself together for me. i would not have made it through the whole thing without him. i would have hopped up off the table and said "no thanks."

it was a very emotional day for me. afterwards when i thought i was done, they called me over and wanted to see if i could get my PICC line inserted at the hospital as well. i couldn't keep myself together, i lost it. i begged nolan not to let them schedule me. i begged him to take me home and just let me sleep. what a horrible place for him to be in. wanting to emotionally take care of me, but knowing physically i needed this done.

the problem is,  i have to have the PICC line, and the schedule isn't very open. PRAISE GOD they didn't have room for me. i was able to go out to the car and cry (again.) i think i was teary eyed the whole way home. it really took a lot out of me.

i took the bandage off today (24 hrs later) and it isn't pretty. just sitting, i am in pain. if i try to move it is painful. i have holes in my lower back surrounded by some pretty blue bruises. cousin rico said it looks like i was attacked by a giant vampire :-D

hopefully the pain will go away soon. i believe it will.

now i am trying to mentally prepare for the rest of the week. what needs to be done? besides all of the appointments that i have scheduled.?

so i googled "what to do before chemo" and now i am a little worried. they say i need to go to a dentist, and get my teeth cleaned and completely in order before chemo starts. i've got 2 days to get this done, along with 4 other appts. yay! we will try.

i am not even looking at what else they recommend. i don't think i can take it right now. they recommend  things like going "away" for a weekend, or buying a chemo hat... sappy stuff. but the real info i need, i don't want to look at right now. although going and buying a scarf sounds like fun.

like i said, my life has been thrown into a blender, creating a whirlwind. i am still happy, and positive. i am just looking at how close wednesday is. and as i write this, damien rice is playing in my headphones "time, give me time!" and i can say that i agree.


Thursday, January 13, 2011

damn it doll :-)

so..........

had an appt with the oncologist today, and he confirmed that the mass in my chest is lymphoma. which is such a relief. i am so glad to FINALLY know what it is, after all this waiting. we have been waiting on the biopsy, and man, they like to test your patience.

i saw dr. poisson, no not poison ;-) he was amazing. i didn't know a whole lot about him going into the appt, but he is awesome. plus he has this south african/british accent and talks really fast, so it keeps it fun :-p AND he has a sense of humor.... huge relief!

i can't spell or pronounce the exact type of lymphoma, but all we really need to know is that it is lymphoma. and dr poisson wants to start treatment asap. i feel like i am gushing about our doctor, but he was so good to us. i think we were at his office for a total of 3 hours. he let us ask every question. he even called OHSU and discussed treatment options with the specialist up there mid-way through the appt. which was our second opinion. he emphasized that we don't have time to waste.

the mass is so big he doesn't want it to grow and compromise my airway. and neither do i, obviously. he was very adamant about needing to start treatment asap. which is chemo. i won't go into the chemo details, they are a little confusing, unless i write a whole book. but i am starting chemo this wednesday in medford. the chemo we chose, includes a 4 day hospital stay, every 21 days. it will be a little crazy! but this type of chemo is the best option for our situation. i am confident in our choice and so is the doctor :-D

we don't know what stage the cancer is yet. we are STILL waiting on the biopsy to determine the stage. i  am going for a bone marrow test. to see if the lymphoma has advanced to the bone marrow. i will be going for a CT w/ contrast and also a PET scan. you can look them up if you want to know what they are ;-). i will be getting a PICC line inserted into my arm, which is where they administer chemo. the line will go through my vein into my chest to where they want to chemo to go.

there is a lot to do before wednesday. lots of appointments. but it's all good! we are getting the ball rolling.

the visit at the office was pleasant. my parents, nolan's parents, and of course the two of us, were all crammed into the exam room. it was all very positive, upbeat and proactive. no one cried and we all had smiles.

is it weird to say i'm excited?! i FINALLY know what it is, and i FINALLY know how we will treat it. and i will FINALLY start breathing easier as the mass shrinks. i think that is what excited me the most. being able to breathe. FINALLY!!

after i get the PET scan, the dr is going to start me on some steroids to start "treating" me until we start the chemo. the steroids will actually make the mass a little smaller.  they will make me eat like crazy, YES!  it will be like i am on "20 cups of coffee" YES! i am tired of taking 2 naps a day. all of these "side effects" sound good to me :-D

i will let everyone know about visitors, in the upcoming weeks. i may be restricted... it's one thing the doctor lightly brushed on today.

so i am about to fall asleep, it's been a long day. if i have left anything out, i will check it over tomorrow and post a new blog if i did :-D

thank you to everyone for all of your prayers and thoughts, and support!

OH! and i received a "damn it" doll.... funniest thing ever. this little ol' volunteer  lady gave it to me, and said whenever i need to, i can take it and hit it against something and say "damnit! damnit! damnit!" i almost lost it.... this sweet old woman beating this doll showing me how to use it..... i wish i could have caught it on film. nevertheless i will post a picture of the ugly thing :-)

and the other picture is a the rx's i picked up tonight... looks overwhelming right? lol.... we're only getting started :-)

Friday, January 7, 2011

mini update

i didn't feel like blogging much today. i'm pretty tired. i posted the pictures and gave a brief explanation of today. we should know the results of the biopsy sometime next week. this is the hardest part, waiting. i feel like i need to be doing something.

so here is the part where i said in an earlier post i would be sharing everything, the good, the bad, the ugly.

i need prayer with my weight specifically.

this summer i weighed in around 150lbs. i NEVER would have told anyone how much i weighed before this. but now, i weigh in at a lovely 124lbs. i am skin and bones. thank the Lord that leggings and skinny stretchy jeans are in style, because NONE of my jeans fit.

i was wanting to get in shape, and started to before all of this started. i was eating healthy and walking a TON. i can thank my school for that one. i noticed a difference in my clothes a few weeks before thanksgiving. and i was proud of myself. and excited to pick up a work-out routine. but its a little hard with just one lung ;-)

but since then, i haven't watched what i've been eating. and i have been practically bed ridden. and yet, my weight keeps dropping.

now, i'm afraid its getting dangerously low. i am trying to up my calories, but in a healthy way. not ice cream and french fries. so we are looking into a few different drinks.

so there you have it. i can't believe i admitted my weight on the internet. but at this point, dignity is out the door :-)

biopsy # 2

the red area is the mass. the blue area is my heart. the mass is against my heart. the black area below the mass is my right lung. which is being compressed to a 1/3 of its normal size. the white line in the mass is the needle during my biopsy today

Thursday, January 6, 2011

biopsy


a couple of pictures from my biopsy today. lets just say it wasn't pleasant. and they weren't able to get the sample they needed. long story. so nevertheless i head to the hospital tomorrow to do a CT guided biopsy. which is a wonderfully long needle that will go all the way into my chest this time. i'm not exactly looking forward to it, especially after today. i'll spare you the details ;-)

they are having me go for another blood test before the biopsy tomorrow to test how i bleed? something along those lines. the dr also gave me a rx for a valium tomorrow to take before the biopsy hahaha. so i will be plenty calm.

i found out today that the mass is not in my lung (i misunderstood) which is a good thing!! it is compressing my lung, which is why i get so short of breath.  so that is good news. the mass is 16cm x 11cm. so bigger than my fist. hey..... go big or go home (lol)

day 1

for some reason, i feel like this is day 1. the day everything is changing. the day of the unknown. the day of waiting. the first day.

even though this has been going on for months, it started today.

so some history for those that don't know.....

back in july 2010 i started having an unknown clicking in my chest. it was near my sternum on the right side, and would click with my breathing. sometimes it was as much as cracking your knuckle, other days it was a flutter. sometimes it would last a couple hours, sometimes it would a few breaths. but it was always in sync with my breathing. crackling on inhale, crackling on exhale. i was weirder out at first, then became used to it. so did my husband, sometimes you could hear it. i had everyone feel it when it would happen just so they would know i'm not crazy.

i didn't feel like it was something i needed to head to the doctor for. i talked to several people, and no one was concerned. i talked to my chiropracter, and she spoke with a doctor. so i wasn't being irresponsible. it was just my cool little chest cracker.

i started cosmetology school in september, and 3 days in i came down with a bad cold. i was so proud of myself for not missing school, and making it through. you see i normally would love to lay in bed and recover. just as i started feeling better i came down with the same exact bad cold. same exact symptoms. i cried. i made it through the first one, and was so physically/emotionally drained i didn't feel i could do it again.

i decided i needed to go to the doctor. so i headed to the local zoom care, in portland. cheap, and fast. i needed cheap, since i have no insurance. the "doctor" (i don't know their official title, but its not doctor) told me i had bronchitis brought on by a secondary infection. whatever that means, i was happy to have a diagnosis, and a treatment plan. and of course with bronchitis, is a very pleasant (not!) cough. but nevertheless i was excited to get my antibiotics. i missed a few days of school and recovered in bed.

the cough never went away, but i heard that you can have a lingering cough after bronchitis. so i figured i had this lingering cough. and some exhaustion. the cough was bad, bad enough that i have developed a wicked six-pack (yes!) crunches are out, coughing is in!

a month went by and my cough was no better. a girl at my school suggested i might have pneumonia, she was just diagnosed with it and my symptoms sounded similar to hers. back to zoom care! they didn't think i had pneumonia, but sent me for a chest x-ray (luckily) and it showed pneumonia. so we went on to another antibiotic. symptoms were supposed to start getting better a few days after starting, so i gave it 4-5 just to be safe. no better. so i called into zoom care and they wanted to see me again. yay, more money to the system!

they wanted to see me again because i almost passed out in the shower, and my legs turned a pretty shade of purple while i was in there. so i went back in, legs of course were no longer purple, that only lasted a few seconds. they put me on a heavy duty antibiotic to get rid of the pneumonia. they said 24-48 hrs i should start to feel better.

i wasn't. at this point i was still bed ridden. getting up to go to the bathroom was like running a marathon.  brushing my teeth would make me gag, and drain me of energy. don't even get me started on showering, the thought of it would make me cry. i could shampoo my hair and barely rinse our conditioner before i would have to lie down and draw a bath. which my loving husband would assist me the whole time.

this wasn't normal. i felt like a child. i felt invalid. i couldn't even get myself a glass of water. i had all of my meals brought to me. which is all in thanks to nolan, he has taken amazing care of me. i had to take a leave of absence from school. so 2 weeks before christmas, we decided 'what the heck' lets go home for a long christmas. so we packed up our things (or, well, nolan did) and got on the road.

the first night at home (my parents) i kept waking up and trying to roll over. except i would have shooting pains every time i tried to turn. so i would try the other side to no avail. so i would make myself go back to sleep. i kept waking up, and kept dreaming. i was dreaming that i woke nolan up and asked him to call 911 (which i actually almost did) finally it got to the point that i was in such immense pain i couldn't breathe. so i started crying (i have a little fear of not being able to breathe) and nolan woke up. between my chest pain and crying i could only get sips of air. so after 10min, he was able to calm me down to where i wasn't sobbing anymore, making it easier to breathe.

my parents suggested i go to the ER, but i didn't want to get ahead of myself. plus i despise three rivers ER. it was 6am, and i thought maybe my sister-in-law would have an idea of what was going on. my reasoning? because she is my chiropractor and is a wealth of knowledge. i met her at her office, and she recommended i see a doctor at her practice.

he asked me to go get an x-ray and come back to the office for a 10am appt. the pneumonia was still there. and it seemed that i had pleurisy, a painful chest thingy. he gave me vicodin, and ibuprofen. normally pneumonia lingers in the chest after antibiotics.

2 weeks later, i'm still coughing up a storm. so they send me back for another x-ray. the x-ray looks exactly the same as the previous one. which is concerning. so the dr suggests i see a lung specialist. which didn't happen right away because of the holidays and some confusion between dr's offices.

they ask me to go get a CT (cha-ching!) to have for the specialist. to give him a better look at what is going on. which gets delayed because i am a self-pay patient, and they are not cheap.

which leads me to today, day 1.

i go for the CT, and less than a hour later i get a call asking if i can come in to discuss results. i already know its bad. they don't call you a hour after you have a CT. especially so close to the end of the day (i got the call at 4:30pm) i know its not good.

i'm already with my mom and husband, so we all head over to see what's going on. they take us back, and we are all cracking jokes and trying to stay positive. yet the MA seemed so somber, i thought maybe she wasn't having a good day. little did i know.

the dr comes in and my memory is a little hazy about this section. he has the most amazing bedside manner. and what i hear is that i have a mass in my chest, and it looks like it might be lymphoma. i start crying, my mom starts crying. nolan is so strong for me at this point. the dr continues saying this is a form of cancer, but that it is treatable. if you want a cancer, this is a good one to have.

all i hear is cancer. cancer. cancer.

i have cancer.

my mind is out of control. i think about my husband. i think about our life. our future. our future children. what will this do to him? what if he has to live without me? i don't want to hurt him like this. this is why my memory is fuzzy.

the dr says that IF it is lymphoma, i have a long hard journey ahead of me. we talk a little about chemo and radiation. he shows us the CT, and the mass. and when he said mass, i didn't realize he meant MASSIVE. it's huge! i can't even describe it.

we go back in the room, and my dad shows up. we talk some more about where to go from here. we start with a blood test at the hospital (which they must have thought i was a pin-cushion!) and then we do a biopsy. we talk about different types of biopsy, where to biopsy, the risks of a biopsy. but that is where we start.

i've had my blood test a few hours ago, waiting to hear on the biopsy.

i had a good cry at the dr's office in a little room with my husband. i've had family and friends pour out prayer over us.

i'm curious about what's next

but the odd thing? i'm okay.

a little weird right?

i am at such peace, that it only can come from God. my husband is at peace. this doesn't mean we didn't cry, or we weren't scared. we are just at peace.

we have been laughing, cracking jokes. having tender moments intermixed with laughter. it feels so good to laugh. it feels so good to look into his eyes and say 'i love you.' it has brought us closer, it sounds so cliche, but i feel my heart growing for him.

so this is where i am at. the unknown. it will take weeks to figure out what is exactly going on. but it is a peaceful unknown. i know that whatever comes is not my will, but His. and i find such comfort in that! i may not be saying that if i'm going through chemo ;-)

and i am thankful. i have amazing people in my life! amazing! i have the best family. i have the best friends. i have people in my life that i know were strategically placed. nurses, former cancer patients, husbands of former cancer patients. i have a wealth of knowledge surrounding me. and i am thankful.

i am thankful veronica is in my life, her knowledge and intelligence is a blessing. she is the best nursing student ever! i have my grandmother that battled a form of lymphoma/breast cancer and she beat it. i have awesome Godly counsel. i have shawn who is going to be one of my husbands go-to guys, his wife just battled cancer. i have the tardieu's who i know will give us wisdom and advice. i have my AMAZING family that doesn't want to leave my side, and they all want to fly/drive to me.  i have so many people that i cannot even name them all. and they are all in my life for a reason. how could i not be happy??

my plan is to document this journey. the good, the bad, and the ugly. pride out the door. even tell you how much weight i've lost (gasp!) maybe even post the unflattering photos of me. if that is what this comes to. let everyone see into life as a possible cancer patient.