Quality of Life

Going to sleep whenever the body likes, rolling around the bed without a care in the world, no clocks, no cares, rising from bed or the lazy boy whenever I care,

meds meds and more meds hopefully a combination that works is within reach, scans scans x rays and more scans, blood work, urine test and so many more just to make it day from day.  Daily struggle with fatigue, cognitive memory, pain, inflammation, aches like u have the flu but it doesn’t go away.   It can be a struggle just to make it thru a day, to the outside world you look normal but underneath those clothes are scars from several operations, hidden above the breast and below the collar are three little dots marking the port.  The port which basically poison is injected into the body to fight the cancer which for me was hereditary.

Welcome to the world of Cancer with Auto Innume Disorders on the side, your world rolves around doctor appoint 

Camping, Whitewater Rafting, Learning to Snowboard, Visiting England, France and Germany, fly to Japan just so I can go doll shopping a stopover to Korea and Hong Kong for some even more, than a stopover to  Hawaii, visit North Shore maybe learn how to surf, than California jump a train or car up the Ocean Hwy stopping off at beaches then Alcatraz, up to Washington and Alaska than back to Victoria Canada then over to Quebec, swing by Maine buy or rent a camper, off to  Philadelphia, Boston and New York, West Virginia for some camping and rafting, swing by Tennessee to Dollywood, Cherokee, on the way to Louisiana onto the air boats, and off to Florida to NASA then on to Disney and Universal and back on the way to NC for a while and then maybe visit the states we have not seen.

Scans

Bloodwork

Pains

Ache

Swelling-Literally lose the swelling lose 20 pounds

Fatigue no matter the amount of rest or the sleep you get your body still feels like it has been thru the ringer and finished off with a hit from a big mac

Sleepiness yawning, eye lids struggling to stay up yet can’t sleep

Forgetfulness damn keys always growing feet and walking off

Inflammation all over

Dry Eyes, gritty and burning

Dry Mouth, dry as the Sahara or a cotton ball

Teeth crumbling even with proper maintenance

When you think you have gotten under control and suddenly you have several days of limited to no pain you forget your limitations and overdo it sending your body into a tail spin.  Then you have to start all over again trying to get the pain under control in an attempt to live a normal life.  But what is normal?

There comes a time when you must let go of part of your dreams and make a change.  Family and friends are the most important as well as following other dreams one has.  Struggling to maintain what one had before nature decided to throw your life in disarray is admirable but there is a time when one must realize what is right for now and the future.  

The biggest thing I learned when this battle began was listening to my body when it said sleep I slept when it said eat I ate, when it said soak, I soaked, when it said nap, I napped.  Sometime after I reached NED (No evidence of disease) I relapsed into pre cancer thinking choosing to play the denial card acting as though I wasn’t Stage IV and resuming my life acting as though my body hadn’t been thru the ringer.  2 years of Chemo, a dozen surgeries, a month of rads, a two day stay in the hospital with an infection, then a dx of a brutal autoimmune disorder.  I resumed my seven day a week almost 24 hour job, that I loved, trying to bury deep the fact of my cancer an autoimmune.  For a while everything was hunky dory, but all good things come to an end.

Struggling to sleep, struggling to wake, walking thru life in a daze, a simply task of driving 30 minutes up the road is exhausting resulting a need for a nap, but there is no time for one, and if there was a little nagging voice want allow a nap afraid once the eye’s close a day could past, and u have some important to do shortly.  One day it’s a knee aching, the next day it can be all, your body, pains that in order to relive means  there is no way one can go to work because the amount of meds it takes to relieve the pain means a nap is order can’t work if your asleep or sleepy.  Taking medications to get a little time to live life and to pay medical bills, the little time it provides has to be divided into work, recreation, shopping, family, rest and sleep.   The frustrating thing is right now I really don’t have time for very much work and sleep Monday thru Friday with little or no time for anything else.  The weekend is an escape where I literally block out the world and attempt to rest and relax, no time for anything else because sometimes I have to sleep all day to recover from working which for over six months has even been a 40 hour week the majority of the time.   Struggle isn’t quite the word for it the doctors are running test changing medications trying to improve my quality of life which even my Oncologist called very poor this year.  

When I think take 2 steps forward I am smacked 6 spaces back which is frustrating. Especially when your use to be able to leave on a Friday to spend the week on the coast like you have always done since the first trip up to NC State Campus in the Summer of 1996, even when on chemo in 2008 and 2009 you were able to escape and come back refresh.  Yeah that ship has long since sailed, I literally needed a vacation from a vacation.  Several people have mentioned taking some time off to get the medications right and improve the quality of life.  I would be lying if I said I had thought about to tell you the truth it has always been on the board but as a last resort.  For a long time I saw at as given in or declaring defeat to the cancer and autoimmune but after seeing one after another of ladies dx before and after me be fine and suddenly they are gone.

I fell D day may be coming faster than I anticipated, each day the pain increases, the joints are aching, bruises appearing out of no were, swollen hands, inflammation, among so many other things.  It is time to roll the dice this is year 5 which could be good or bad.  The 5^th year is when my mom’s cancer took the upper hand.  In a few weeks I will learn which and how much Chemo I will have be it the Abraxane to fight my Triple Negative or a low dose of Methoraxte in a last ditch med to get my Sjogren’s and Rheumatoid under control, I seem to be plowing thru meds desperately trying to find something to relieve the pain, on the bright side it’s the auto immune and not the cancer like some many of my Cancer Sisters who are themselves plowing thru chemos in an attempt to stop the cancer from eating there life away.