Thursday, October 10, 2013

Gray Area

I've never realized before in my life how much I like having a plan.  Well, what I've really not realized is how much it can make me nuts to NOT have a plan.

We're in gray area again.

I saw my doc yesterday and had my usual tests done.  My lab work, including my liver enzyme levels and white blood counts, all look excellent!  However, I just got the call that my tumor markers are up a bit again for the second month in a row.  They aren't up by huge amounts, but enough to warrant a peek, so on Tuesday I'll have a CT and then see the doc on Wednesday.

What can cause tumor markers to go up?  A few things:
1) Progression.  Euphemism/Definition of the Day:  progression
A progression is a nice word for "it's gotten worse".  We are always wanting to hear that there are no signs of progression of my disease.
2) Radiation.  I had a shot of radiation three weeks ago (but my tumor markers had started to elevate before I had the radiation).
3) Oddly enough, the HEALING of bone metastases can cause markers to raise.

This means they don't know if my markers are up because of a progression or due to treatment, so the CT scan will tell us.

I also will be seeing the orthopedist tomorrow to follow up on my hip.  I'm still on crutches and my hip still bothers me daily a bit, but it is WAY better than a few weeks ago.  I'm on no pain meds - not even ibuprofen - and Jason has to remind me to use my crutches around the house instead of limping.

Hopefully by next week we'll have a plan and be out of the gray area.  The gray area is never easy for my psychologically.  It's like when we were in college and you didn't know about what your boyfriend was doing/thinking.  It is easy for your imagination to go places it shouldn't because you don't have hard facts to hold onto!  Of course, in college I would always just tell friends, "JUST ASK HIM! YOU'RE MAKING YOURSELF NUTS!"  Oh, if only it were that easy now. :)

On another emotional note, I've lost two cancer-colleagues recently, which has also been a bit rough. Jen Smith was my guide through all this, my attitude-twin in this metastatic world, out to conquer everything!  She passed away last week in her hometown of Champagne, IL.  This pic is with her son, who just started first grade. Jen is the person who introduced me to the idea of long-term disability, for which I am forever grateful.  She also is the one who suggested we apply for a retreat from Little Pink Houses of Hope, a trip we received and loved.  Jen wrote two books about living life to the fullest through this disease.  She was a glorious ball of energy and love.



Michelle White was one of the women who joined us on our Little Pink Houses of Hope retreat last fall in Delaware.  She and her daughter, Emily, were so lovely to be around!  We had a great secret sailing trip with just our family, Michelle and Emily that was very special. Michelle passed away recently in New York.



On the other hand, I have to say that I still know I am incredibly lucky.  I am in contact all the time with women who are in my shoes but still have to work to keep their insurance; women who don't have amazing husbands like mine; women who don't have financial means to hire a housekeeper when they are tired; women who don't have friends and family running to help with anything and everything; women who just don't have the enjoyable and BLESSED life I have.  I am thankful for all of it still every day, even if I have to really remind myself of it a bit more some days than others.





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