Seems like it's been so long since I have been able to blog or to even check this site, my gmail or my facebook but wow has it really only been a week or so...

I have not felt good enough to actually sit down to try and type or to even have the energy to think of what to say.  This past week has been the toughest since I started treatment, appears that everything really hit hard on Monday, the blisters came out on my hands, they got even worse in my throat and I spend majority on Monday crying and waiting (and this was by chance) for a follow-up appointment with Dr. Moses from my surgery.  In my head I knew everything was a side effect of treatment but boy was I praying that during his exam he would be like "Wow Sue, did you know you have strep throat".... but alas that didn't happen and yes it was all raw, red, swollen but not from any type of infection it was all from the medicine so from there I went home and cried again :).  When Joey got home from work he finally was like you need to call U of P and tell them, I had my standard appointment on Thursday so I was trying to do everything in my power to wait for that day, though they had told me 2 weeks ago to call if things got worse and not better.  It's hard for me to say when it's bad, to me if I call and tell them or when I meet them for my appointments, I have to keep what I say in check as I am so afraid that they will pull me from the program or lower my dosage and any complaining I do I feel like I am giving up.  I KNOW I"M NOT BUT I'm a pretty stubborn person as it is, and if I get something in my head it's pretty hard for anyone (myself included) to change my mind so again I didn't want to admit that the medicine was making me feel so horrible.  And then as luck would have it, my nurse doesn't even call me back, so here I go crying again the next night to Joey and now saying they don't even care enough about me.  Ha-Ha I think my doctors forgot to tell me that losing your mind was also a potential side effect...  I did get called on Wednesday (nurse had that wonderful bug that has hit so many of us) and at that point I was like, I'll be in tomorrow but expect to hear that things are not going so well, you might want to get the Dr. in the loop now.  Between Monday night, Tues and Wednesday I had myself convinced (in my head still) that if I go to U of P, tell them everything that has been going on, then they are going to reduce me but that's ok right, I still have room to play, I can go to 100 milligrams and then I still have another one if I need to as the lowest is 75 milligrams until Pat (my nurse) explains no that's not how the protocol works, you go from 175 to 125 to 75 and that's it.... so here we go again another head game for me to deal with, way to burst my bubble Pat :).

So needless to say after all of this, I go to the appointment on Thursday and they decide the best course of action is to take me off the drug for a couple of weeks (yes completely take me off) and then I'll restart once my body calms down at the lower dose.  Taking "a break" totally freaked me out and I tell the Dr. and nurse my feelings (so easy to do on this forum but for me to tell them, it's a little bit harder), that it makes me think I'm giving up, that I'm quitting and while I know it will be hard to continue on this path I don't want to NOT take the medicine.   She explained that this is all perfectly normal - getting the break, and the dose lowering - that it's part of why is experimental, they are still trying to figure out the correct dose and everyone gets the same starting point and as you know every person is different so I need to relax, get myself both health and mind healing and then we will start again.  So that's where my WHEW comes in :).  Personally I am quite ready for the break, I would be very happy to feel even half human again, to not bark and bite at my husband at the drop of a hat (and the rest of my family has now seen what happens when I hit my breaking point - up to then I gave little bits here and there but never all, never the anger, the hurt and how it just comes out when I am so completely exhausted and ready to burst from that and dealing with the pain in every piece of my body.  I don't like showing that part of me, I like to still think I am strong but I also know that I'm hiding things from them on how I feel and that hurts them even more.  I'll try to do better and I really, really will learn what I can and can't do when to say enough and hope I can just partake again in the next family gathering. 

I am on day 2 with no meds and while I am nowhere near as bad as I was on Monday there is still a lot going on but at least the blisters on my hands have dried up and now it's just feels like dead skin (though a lot thicker) I can type again and hold a fork.  I did wake up this morning with starting on my feet so walking was more difficult but hopefully come day 4 without the meds maybe they won't come out all of the way or they will stay like they are now.  Who knows right, just have to ride the wave and see what happens. 

I am now just trying to get through this week with no medicine and hopefully eat enough to put a couple of those lost pounds back on before I start the meds up again next week.  I hope to be able to chew and swallow a good old wonderful steak, maybe even some crab legs cause my hands will be better and enjoy the heck out of being normal in a couple of days, I'll take what I can get and then start the lower dose and see what happens.  It's only another 6 weeks before I can do the scans though I do have to ask if the "break" week counts in it still cause if so then it's only 5 more weeks if not then I guess it will be 7 weeks (UGH) time to go back to taking it one day at a time.

That's my past week - I'll update you all over the next couple of days especially on how the eating goes, I am extra excited on that because of my aunts/uncle being here from Hungary so there is even more wonderful food to be had :) I too need this time to feel better so I can savor these moments with them, it's incredible to have them here with us, another form of healing...

Thanks for listening.

Love & Peace,

Sue