Sunday, October 5, 2014

What's worse hearing you have cancer or being told it is back?

First thing I have to say is that I am sure this is different for everyone. There is a billboard for a cancer center in our area that says "There is no such thing as routine cancer" which I totally agree with.  Within our family if you ask Chad, or me, which was worse you get a different answer.

Chad would say hearing I had cancer was harder. We did not know what to expect. We did not know my doctor. We did not know how I would react. It was all unknown and totally not on the Withers masterplan!

My family history is a who's who of  cancer so I knew I'd get cancer at some point but thought I'd be older and feel worse. The first time I had no time to react. I was thrown into treatment and just had to make it through. For me, hearing the cancer was back with a venegance and I needed to be retreated was much worse than the first time around. It was worse because I knew what to expect.

It is really hard to know how bad you are going to feel, and what you are going to have to go through and to have to do it again without that long of a break. I am far from this point, but I can see why people hit a limit where they decide enough is enough with the chemo.

The next time I get the news my leukemia has come back (because it is a matter of when versus if) the plan is I will be heading to Bethesda to NIH. I will have to stay at NIH a week a month for 8 months. It is an oral drug but the side effects are like chemo so it will not be a fun year going through this treatment. There is the chance for a "cure" with this drug though which makes it feel more worth it than something I know will only work from a year or 2 for me. I won't know until next summer if this is what my next fall will hold for me.

I've been feeling pretty optimistic with my steroid juiced blood work from a few weeks ago and my energy still progressively increasing. I've been feeling so good in fact that  we've booked vacations for the next year :).

Yesterday I had my regular every 2 week blood work done and was a bit of a reminder that there will be ups and downs over the next few months. My counts yesterday were down across the board. My hemoglobin and platelets are still okay. My white blood cells  dropped about 25% from two weeks when they were only half of the low end of the normal range. This could just be my body readjusting to life after steroids but it does not feel great to have a couple weeks of moving down.... we were hoping I could move to lab work every 4 weeks but think I will likely be back in every 2 weeks until we see an up tick. Heavy sigh...