I am still itching like crazy…it is all over, almost all day everyday and is slowly driving me insane…I have just had to cut my nails down as far as possible for the second time because I am making sores I’m scratching so much…

the doctor had given me a prescription to help the itching and it didn’t really do much…I spent an hour this morning googling itching as a symptom of Non-Hodgkin's Lymphoma (it is most commonly associated with Hodgkin’s disease, but is a B symptom of NHL)…let’s just say that I will not be convinced the cancer is not back until I get my CT scan on the 26th (with results at a doctors appointment the following week)…

I’m trying really hard not to be paranoid…not to think the worst…and not to read into anything…but this itching is not being caused by anything…I don’t have a rash, I am not allergic to anything, and nothing in my life has changed to cause it…I had intense itching about a year before I was diagnosed and we never really figured out why…I now know it was probably an early symptom of the Lymphoma so it is hard not to go ‘there’…

If I do relapse it is statistically going to happen in the first 2 years…70% of people with NHL survive and 50% of people who have a relapse survive…from what I read this morning chemo the second time around is a lot more intense…I’m just getting all the bad out there so it is out of my head…I think this is one of the harder parts of remission…I’m not sure there are many people who can really understand the fear I live with, sometimes I just shut-down (I think I did that a bit this week)…I just don’t feel like it is something I can talk to anyone about….

I am trying my best not to let this affect me but the fear of relapse coupled with the emotional exhaustion of itching 24/7 is wearing me down…

Here is my decision on work tomorrow…I am not going to the training…I will not let them demand that I work 21hrs in a 24hr period it is not right…we will just have to figure something else out…maybe I can go to the Connersville office for the training at a later night, I go to visit a friend in Indianapolis the night before and stay a day or two to hang out…a great excuse to go see a friend and I don’t have to end up working until I am incoherent…I have also felt like I am going to throw up when I do more than walk from room to room and would rather not it get worse with pushing myself to exhaustion…so there’s that…we will see what happens eh? (I’ve always, secretly, wanted to be Canadian, my birthday is on Canada day…I think it is destiny…I would settle on marrying a man with a Canadian accent that said eh and could introduce me to a Mounty…I’m just sayn’)…

O.K. going to lay back down on the couch and snuggle with the dog now…can I add that being this itchy all the time makes one VERY grumpy…I just wanna scream!!!!!

awhile ago I shared my thoughts on remission, sitting here with my neck red and hurting, I think it is time to share my thoughts on radiation treatments…

as the doctor said this afternoon, when I told him to be careful of my neck when he was examining me… “it isn’t a trip to Cancun is it?”…yep doc, you said it…you may leave sunburned but there is no ocean to swim…

Let me elaborate…

on Monday I was discharged from radiation, everyone was excited except me, I was so tired of going and had emotionally detached 3 sessions ago…

the thing about radiation treatments are that the side-effects come slowly…they sneak up on you like a super secret ninja…about a week after starting my throat hurt so badly when I swallowed that I could not eat and lost 8lbs a couple of weeks ago and about 3lbs this week..we stopped treatment while my throat healed and then the skin around my neck started getting red…it got progressively worse until we are where we are now…my neck red, dry, scaly, and sensitive…have you ever had to scratch a sun burn? No? well let me tell you it hurts…the only treatment is to several times a day slather my neck with either a Vaseline type cream, or silvadene…

oh and don’t forget the fatigue…that is the sneakiest ninja of all…you can be sitting down and feeling fine until you get up to actually do something and BAM! forgetaboutit…you are stuck…

last week we went to the mall, got a GREAT deal on Bath and Body Works soap (I love how they smell) 75% off baby! we stocked up since the nearest B&BW store is an hour away...if you have ever been to the Evansville mall you know that Bath and Body Works store is at the very front of the mall…after that store I was exhausted…I couldn’t carry my purse or the shopping bag…I felt so helpless and frustrated…I just wanted one regular day out where I didn’t feel sick…I guess that day will come later, huh?

I don’t have any profound thoughts on radiation other than… while the side-effects are lesser than chemo, it gets you in other ways…having to go EVERY day for treatment, can be a little emotionally draining…

this afternoon I asked the doctor when I could expect to stop thinking that everything that happens is a symptom of cancer…he said that if I was like him, I would never stop thinking that a change in anything physically could be a symptom…then he said something that helped me relax…Dr. M said that they have me under such a magnifying glass that they would most likely know something before I did…and so I relaxed for the first time since being told I was in remission…

I scheduled a few more blood works in the next month along with a CT scan and another doctors appointment…I’m anxious to get the CT scan, I am convinced that the cancer is in me growing and that I am going to be told I have to start chemo again…I need to be told different…I need to know that my CT scan is clean…the last scan was in October…

I have been Cranky for DAYS now and I’d like to be April again…I’m pretty sure that 60% of it is caused by being a women…(boys that read this blog skip the next few sentences) I started my period yesterday so I should be expecting better moods ANY time now…That time of the month is not so bad for me…it only lasts 3 days, and I don’t get cramps that are too terribly painful…HOWEVER, my period literally SUCKS THE LIFE out of me…and I am only being a little dramatic…the days before and during I am exhausted and could sleep all day, all day, all day…this of course only works on my weeks off…this week I just have to suck it up…

I don’t like being Cranky…especially because I know I am being Cranky and then I find myself feeling bad AND being Cranky…I am sarcastic, short-tempered, and impatient…mostly I just try to be silent, that eliminates the likelihood of saying something I don’t really mean…I don’t like who I am when I am Cranky…I am usually not Cranky for this many days in a row and I am tired of it…I just took some extra Effexor, I am prescribed 150 a day and only take 100 with the 50 extra for when I am having a time of increased anxiety…I’ve not taken extra in MONTHS so I don’t feel bad…

I’m also still really itchy which is making my crankiness more acute and making my quality of sleep well, not so quality…the medication the doctor gave me for the itchiness is supposed to be taken 3 times a day and I am NOT good at taking medication 3 times a day…so needless to say it is not so much working…

there are only 5 more radiation treatments for me! two more this week, today and Thursday, and three more next week…I am BEYOND ready to be done…you have no idea…and I very much hate having to wake up from a  sound sleep to go be poisoned and then make it back home just in time to ‘relax a bit’ (or let’s face it go back to sleep) before work…I’m just hoping I can finish these five without my throat acting up again…it is still sore but not so much I can’t swallow…

There was an idea I was hoping would happen next week, an idea I need more than can be put into words…it is not going to happen and it is not going to happen because of these damn treatments and I’m angry, I’m angry… disappointed…and since it is nobody's fault…I don’t have anyone to put my anger on…no one to blame…no one to hate…*SIGH*…I want my life back…

I’ve got some pretty amazing news to share…news of things that have happened the last few days…news that should make me uncrankified…but alas…I’m here, typing to get SOMETHING out, and not being successful…

I am tired but it is almost 5 in the morning and I am still up…I tried going to bed earlier…as I laid there frustrated and awake I decided I may as well get up and get some things on my ‘to do’ list done…I’ve gotten some thank you and congratulation cards written, as well as finding a better way to store my Christmas cards (I’ve already got them for next year, they are AMAZING, and were free) so they don’t get messed up…and now I am watching ‘The Mentalist’ on line and typing up this post…I am hoping to get a couple of book reviews up or at least started…

I am still VERY tired…I didn’t take my normal medication to help me sleep because I thought I was tired enough but my body being tired doesn’t close off my mind now does it…

mom and I are doing the Advent reading at church in the morning…she has informed me she wants to do the short parts at the beginning and end, I think that means I get to light the candles while she is reading the scripture part…I hope I can get the lighter on (there always seems to be a problem with those no matter at what church you see an advent reading)…

My throat is getting better…it still hurts to eat, but I am right now eating an apple and it is going down pretty well, so that is good news…I have been so hungry all this week…but I have to tell you that this is a diet that WILL get you results…get some radiation on your chest until it starts to hurt when you swallow and you can’t eat, and the weight just FALLS off…my friend who shall remain nameless said that she cannot ‘VALIDATE’ this form of dieting…and while I agree with her it is not the best way, it does work…I’ve lost at least six pounds this week, not that I can’t stand to lose a little a lot of weight, I just am not so fond of the way it is happening…

all kidding aside, I am glad that my esophagus is healing and not SO much looking forward to resuming treatments on Monday, but I will, because that is what I do…

I’ve also been really tired this week, but I think that is the side-effects of radiation…as well as a side-effect of the medication the doctor gave me for the crazy itching I’ve been having…I’d been taking Benadryl but it makes me really tired, so the doctor gave me a prescription that he said might make me less drowsy but (I think) not so much…and I’m still ITCHY ITCHY ITCHY…

I had two actual doctors appointments this week…

one with my oncologist who said that my blood work is keeping steady…he has finally freed me of steroids for the first time in MONTHS and MONTHS…so that exciting!!!! things are still not normal but he is going to keep a close eye on my blood work and we will go from there…and…

one with an ENT…I have really sensitive hearing, and when things are really loud it sounds like I am hearing through a speaker that is distorted…and sometimes it can hurt…so the oncologist referred me to Dr. E…he said my ears look great, there is no fluid built up anywhere…he is sending me for a hearing test and will discuss the results with me at a later appointment…

today I saw my oncologist so I took in the presents I had assembled…because of some great halmark coupons a few weeks ago I was able to get four of these…I gave them to the nursing staff, the front desk, the doctor, and the radiology staff…

I also gave each section a bag of choc-O-late!
and each individual person received a card

the inside

I included a copy of this note I wrote last night…

This year…

has been difficult…

it has been stressful…

it has been life-changing..

it has been informative…

and it has been lonely…

people can want to help…they can give you money…they can send you a card…but unless they have EXPERIENCED cancer themselves (and I don’t mean through a family member)…they do not have the capacity to understand how hard it is…they can’t understand what it does to you physically and mentally…

you at the Cancer Center are the only ones who I felt really understood this rollercoaster ride I was on…I didn’t pay admission for the cancer amusement park, I didn’t want the tee-shirt from the gift shop, and I sure didn’t want to ride the rides…but I found myself there and found you to help me navigate…

thank you…

for making me feel safe…

for being available for ALL of my questions…

for understanding when I cried…

and for tolerating me when I was angry…

as of today I am in remission…I don’t know what the future will bring…in 5 years I may be considered cured…or in six months I could have a relapse…either way I now know that I am capable to make it through anything…no matter how uncertain…

I choose to be Thankful for;

#1. The ability to go to radiation…I may not like it, and I may not want to go, but I am blessed to have insurance (through the state) and have the ability to go…

#2. The ability to get prescriptions when needed…I was given two prescriptions today, they were unexpected and one was not covered by Medicaid…it ended up only being 11 dollars instead of the normal 3 dollars which I know is WAY less than some people have to pay for their monthly prescriptions…so while I am not happy about having to get those prescriptions today…I am thankful that I had the money in my bank account to pay for them, and I am thankful for the help they will bring…

Dr. R has decided to suspend my radiation treatments until at least Monday, because the pain I have swallowing is getting progressively worse…I just want to cry sometimes when I eat…pain is emotionally draining…

She gave me a liquid pain medication, and a new mouth rinse/gargle to try and help numb it before eating (I am not sure it is going to work though, when I used it my tongue and lips were numb but not the base of my throat…)

She said that the tissue in our esophagus's heal quickly, and if they just kept on with the treatment without a break, the pain would just get worse and worse so we need to stop for a while…

I am kind of disappointed because this may mean that I am not done with treatments before the new year, and I was SO looking forward to starting 2011 treatment free…

radiation has been hard on my throat…I am only halfway done and it feel like there is a rock at the base of my throat and when I try to swallow or eat (even applesauce) it ranges from aching to it downright being painful…I have a prescription mix I’m supposed to gargle and swallow that helps a little, but it has been a little emotionally draining (not really the eating part, just the pain part…)

please pray for me this week, that I can shake ‘it’ off and enjoy this week before Christmas…

Saw Dr. M Thursday…he said my blood work was looking good and decreased my steroids from 10mg to 5mg a day…I am ALMOST free of steroids for the first time in MONTHS! I’m just a little bit exciting about that…I talked to him about the statistics on reoccurrence, and he said there is a 40% chance of the cancer coming back, and with how aggressive mine was that percentage is increased…he also said that if it does come back it is usually within the first two years (even though they closely follow things for 5 years)…I’m glad to know that chances of it coming back…it helps me process things better…the more I know the better I feel…

My first radiation appointment was not as bad as I thought it was going to be…and I have been able to rig the hospital gown so I am not having to lay there ALL exposed and stuff so that has been nice…Monday will be my 5th of 17 treatments and I am already tired of having to go there EVERY single stinking day…next week will be harder because I have to work every night and still get to radiation at 3:30 everyday…I am going to be dragging for sure…

This week I found a plastic container drawer thing and put all my cancer ‘memorabilia’ in it…I’m glad to be able to put it away…I will never, nor do I want to, forget this past year…but it was nice to box things up…when I was getting my blood taken I asked the technician for some of the vials they use to collect the blood, I thought will all the blood they’ve taken it would be nice to keep a few of those in the box as well…luckily the women didn’t think it was too strange an idea…

I’m so achy and tired…maybe I am getting a cold or something because my head kind of feels stuffed up…it is noon, I have only been up for three hours and I am ready for a nap…

This afternoon at 3:00 I have my first radiation treatment…this first treatment will be the longest because I never went back in and got the tattoos so they will have to spend some time finding the exact right spot to aim the radiation…I think as long as I go into it knowing it is going to be a longer process (at least 30 min or more) then I will better be able to get through it…but I will always hate having to be bare chested laying on a hard table with my hands above my head while people line me up like a deer in a scope to be poisoned…

I am praying that the next 17 treatments go smoothly and that my skin does not get too red, I do not want to have to stop treatment in the middle because my skin is getting too sensitive…I want this all to be OVER before the new year…I want to go into 2011 completely in remission with no more treatments scheduled…I want my hemolysis stuff to be resolved and I want to not have the hospital be a regular (you know WEEKLY) stop on the route that has become my life…these are the desires of my heart…

Someday…

Some great wonderful day…

When the sun is shining,

flowers are blooming,

little bunny rabbits are skipping merrily,

squirrels are scampering up trees,

and unicorns are spreading magic to all,

while beautiful music plays in the background…

that day…

on that magical day…

I
will
be
able
to again
use
THIS…
my hairbrush…

I miss you friend…