My last weeks of treatment

[greyrocker]

rjs, don't worry, this is no party and you're no party pooper. Too bad the old site got wiped out, I could show you some posts from the old Juners thread around Christmas last year when I was freaking out. Better yet, just ask banarep, he remembers.

Here's a small sampling, from an email I wrote my NP just after New Years.... (around week 27)

Also, I have had a very difficult time. It got so bad that I contemplated quitting. My sides have always been significant, but the week between Christmas & New Years was terrible. I have had big trouble with insomnia. At night, it feels like I am over-saturated with the riba. I felt like every nerve ending in my body was electrified and I was literally twitching and jumping. I can deal with the anemia, but not this.

We've been there, now we're here for you, every lonely step of the way. We are your family now, and dammit, I'll come over there and carry you to the finish if that's what it takes.

You can do this!

 
GR

[jimmer]

rjs, I have 7 weeks left, in the grand scheme of things after 41 weeks you would think 7 is a piece of cake. I am not sure if it is the anticipation of the end or just dang sick and tired of it all. Just want you to know you are not alone were all with you, and most importantly WE CAN DO THIS!

jimmer

[rjs]

Thanks Jimmer, Mac, BR and Michele, as always I appreciate your support. Your words and support really help  Thankful to know I am alone and some have been there and it does end.
GR - thanks for sharing your email, I would have never imagined you writing something like that.  I am gonna need someone to carry me if this continues

I have no patience, told my husband about my rbc's and how shaky I am... His answer  "So are you weak?"  What?  He knows I have been shaky and weak.  My answer was "duh"!  I just cannot be nice, polite or understanding to anyone who has no idea really what this treatment entails

This really is like an alien abduction.

Here is where I am at:

Survived the EBV mono in February
Survived the treatment for autoimmune hepatitis In March/April
Survived the wrong diagnosis
Survived the right diagnosis in May
Survived the 18 weeks of HCV treatment Started in June
Survived the sides so far and now it is October
Survived detoxing off the Tylenol 4

I have worked a total of 10 weeks in 2010.  My bed has a permanent dip from me being in it 18-20 hours a day

Scared to death it is going to get worse and my rbc's are tanking.  I am starting to look like Casper and I am Italian! No energy to fight left. Really my fuel tank is empty.  Have no idea how to do this.  If I have to stay within these 4 walls for the rest of this, I will truly have a nervous breakdown.  Not enough AD's for that

Gotta go, dad is here, headache already starting, have to get him some peroxide and Q tips cuz his ears hurt from ear wax.... UGH!!!! Maybe this thread needs to move to the dungeon.

rjs

[keith]

Hang in there rjs, you can do this. Do one day at a time and keep looking forward   ....you CAN do this!                                                     Keith

[rjs]

When it rains it pours... got myself so upset, back to having insomnia, 2 muscle realxers an Ambien and a promethazine and it is 2 a.m.  What am I doing? not sleeping! 

I just cannot see a way to get through the next 5 weeks... my head is pounding and I can barely get up and down the stairs...love having a 2 story house.

   

rjs

[sweet sue]

rjs,

Put your dad to work helping you around the house. If he doesn't like it point to the door. Please don't let him get you all worked up. You also survived the husband making you crazy in the beginning. Add that to your list and add dad to. Put him in his place while he's in your home and if he can't handle it show him the door. You sure don't need the sleepless nights.
 
Hang in there little sister.

sweet sue

 

[rjs]

More upset about the rbc's then anything.  It just pisses me off that I cannot finish this out without one more new side effect to deal with. My dad drove me to Borders today so I could get out of the house.  Nearly vomited several times in the car but just closed my eyes and got there.  Read him a part of Dr. Palmers book on Liver Disease and Hepatitis.  He got pretty wide eyed when I read to him how many people have this disease and by 2015 they expect a four fold increase.  We will see if I made any head way.

I know for sure I could not do 80 much less 48 weeks of this. Those that have are my heros. I am so ready to throw in the towel. Research in Europe has indicated you only need 17 weeks of treatment for an acute case.  I have done 19.  had to sit on the floor at Borders to look at books, (thought about you in grocery store Sweet Sue) and OMG the door to get in to the store was soo heavy, my dad had to open it for me (Though about you, Ipaq, and the door to Walgreens in your building)  I am so shaky and I get light headed, dizzy, nauseous and a headache after the slightest amount of moving around.  I seriously do not know if I can do this for 5 more weeks.  I cannot believe things have gotten worse.  Now I am freaking out that I will not be able to handle work 2 weeks post treatment and that is all I have left for leniency from the workplace.  I have been basically in bed since February 75% of the time.  i hate my bed.  It is suffocating me. I can tell everyone else to hang in there but yet I cannot follow my own advice.  Deep inside I want to keep going, but am just too tired.  Every little task feels like a mountain and my body is giving out, it just cannot climb anymore, yet my mind is still strong, I hope I can keep mind over matter, right now they are at war!

rjs

[Hepper Joe]

rjs:  you only have 5 weeks left.  Pull your boot straps up, put your chin up and keep marching forward.  You have one  butt to kick!  5 weeks left, you can do this.

Joe

[rjs]

I don't have boot straps, but I can try to find my big girl panties 

[rjs]

Hepper Joe,

Found my big girl panties but they keep falling off!  Anyone got any suspenders I can borrow? 

Decided it is time to add on my ativan to my other 10 presxriptio drugs... Gonna go into I dont care mode... la la la    and just think you all get to put up with me for 5 more weeks in la la land!!!!!

If my dad is stuck here due to his recent, oh so seriously painful fall, I am getting a lawyer to request I be put in an induced coma till this is over... Got 4 whole hours of sleep taking care of him... hmmm coma...sounds like such a nice place right now 

rjs

[MichelleZ]

Okay Rjs, this is how you are going to get thru the next 6 weeks:

1)  Your bed and couch are your best friends ...enjoy them and abuse them.
2)  DO NOT FEEL GUILTY that your bed and couch are your best friends, embrace it.
3)  Read
4)  Rent or buy 1,000 of your favorite movies and lose yourself
5)  Set up house in the bathtub
6)  Music
7)  Eat only what you can, I munched ALL DAY on dry cereal straight from the box, screw the milk, I couldn't make it to the store 1/2 the time to buy it anyway AND it kept my weight up.
8)  Tanning Towlettes
9)  Sorry, but screw Daddy.  My advice, you are his child, he is your parent.  Treat him as you  probably did as a teenager, IGNORE him and crank up the volume on that IPod/TV.  You remember how it was done!

I can believe the phemonomal increase by 2015, the Baby Boomers and those like us who are at the tail end of that generation are now actually going to Doctors.  We never had the time before, i.e. kids, careers, etc.  Everyone at work in my age group are all of a sudden best friends with their Doctors...I can see a hugh increase in detection of all diseases with the aging population.  Let's just hope there is enough medical assistance available to carry us through the next 20 - 30 years and for our children.  Beyond that, I can see our system in Canada collapsing and we will be like the US and have to purchase medical insurance (although my family has paid into the system for like 100 years and still continue to do so)!

Anyhoo, enough politics.  The thought of going back to work was a MAJOR stress factor for me.  So much so that I requested an additional 2 months extension after tx, which was approved.  IF there is any chance for you to extend, I HIGHLY RECOMMEND you put in the request now, as I'm sure you're Doctor will support it IN WRITING, which I needed to be approved.  YOU WILL NEED it and be somewhat anxious by then to return.  It surely does make you stronger, faster!

And, of course and as always, we are here for you or with you in the Dungeon!  Now, go watch a movie, read a good book, talk to us, eat, sleep, listen to music...contact your HR Department (lol).

Luv
Michelle

[rjs]

Micelle -

HR has already extended themselves, this last approval was based on 2 weeks post treatment as a return date. I will just have to deal with it. I will have already been out for 9 months of the year.  No go there.

1. My dad is on the couch and I am sick of my bed
2. No ability to embrace
3.  Cannot read... things too blurry and I get a headache
4. Cannot lift myself out of bathtub, I may drown
5. Music - I can do that
6.  Food well I will eat it when it is not already spewing out some orifice
7. Cannot ignore dad when he bangs on ceiling with is crutch to demand help with getting his ice cream or whatever

So I guess what I have left is music... angry music...