Warning, very over-due posting, a bit long...

I apologize profusely for my lack of updating. In fact, I almost forgot the web address to get here. I guess I haven't written in almost 4 months because I've had nothing to update until now. Also, I haven't written cause I am just trying to live my life day by day and forget about the big "C" word looming over me. When I come here to write, I have to deal with it head on.

I've been keeping myself busy intentionally, working full time again, going to NYC for chemo every 3 weeks, managing a household, being a mom and a wife. I have even taken up a side job selling handbags. Believe me, I am very tired, I'm sure my body is not up to all that I do. But I'd rather be exhausted, then focus on the fact that more then likely, my cancer will come back. That the odds are against me.

I got beautiful, flattering card from a beloved family member. I have it sitting on my desk this sums it up, and I cry every time I read it:

"Life is hard sometimes - crazy, mixed-up, messed up.
And there you are, in the middle of it all, just doing your thing...
Being strong and brave and beautiful
like it's no big deal. But let me tell you girl, it is.
Not everyone can do what you can do
Not everyone can handle things the way you can.
While you wonder sometimes if you are doing ok...
the rest of us are just watching in wonder."

I think this particular writer at Hallmark knows me personally!

Anyway enough of the emotional, tear-jerker stuff. Here's my update.

Up until this point I have been just doing chemo every three weeks with really nothing new to report. I've been having some side effects, weight loss, lots of nausea, headaches and mild neuropathy. But I am on plenty of meds to control it all, so it's livable.

In June, I had a scan done that was clean, which was good, but they don't really consider you in remission until you are 18 months post-transplant. The scary news was, they found some fluid on my heart. Which can happen from radiation to the chest. They did 2 echocardiograms, 2 weeks apart to see what the fluid was doing, was it increasing, decreasing, or staying the same. The second of the 2 showed a decrease so my doc was less concerned we just have to "keep an eye on it". I will have another PET scan in Sept.

Since then, everything was going pretty smoothly until recently. Last week, out of nowhere, my neuropathy went from mild to extreme. I was at work and around the middle of the day, my fingers started to really ache. By the time I left for the day, I couldn't hold my car keys with my fingers without dropping them. By evening time, my left foot started in on it and the pain and numbness went up my calf. That night I woke up 5 or 6 times in severe pain. I wanted to chop my fingers off! It's very hard to explain what it feels like to someone who has never experienced neuropathy. I liken the pain when severe, to a bad cut in the sense that it is a very deep, dull, almost throbbing pain. When it is mild, it feels like when your foot falls asleep, numb with pins and needles.

Anyway, this change in symptoms is very worrisome for a few reasons. One of course being that it is very painful and horrible to experience. The other issue is that neuropathy is one of the most common (and potentially severe and permanent) side effects to the chemo I am on. The doctor's are very concerned about it, and it is evaluated at every visit. I knew experiencing neuropathy to this degree would prevent and possibly stop my treatment when reported. But because it is a serious side effect, I have to be honest. I called the doctor and told them the situation.

My next chemo was supposed to be this coming Tuesday, but I am not going to make the trip down to be told what I already know. There is a lot more to this "story", they have been pushing me to go off the drug completely for sometime now. Their reasoning is my side effects and continued weight loss. The docs have been saying it is effecting my "quality of life". I said, I don't care if the side effects are so bad I am constrained to a hospital bed, I am NOT going off this chemo! I don't think they are only concerned with my well-being. I honestly think they want me out because they want to report how few symptoms occur on this trial drug. And I know my intense neuropathy is the icing on the cake for them.

When I made the call, they were pushing me hard to quit as I expected. I pushed back. My doc said he would meet with the Head of the study and get back to me. The verdict was they are delaying me for at least 2 weeks. They will "re-evaluate" me on the 23rd. They have no intention of letting me pass their evaluation. They didn't even put me on the schedule for chemo that day. IF they do actually let me get the chemo it will be a smaller dose, by at least 25%.

My family is not taking the news that I may have to quit the trial very well. I am actually handling it better then they are. I think they put all their "eggs in that basket".

In the mean time, I am trying not to think to far into the future, and what may or may not happen if I stay on the drug or go off the drug. I can't control what happens next.