Decisions and Delays

You might wonder about the title of my blog - 'Twas the Night Before Chemo. Well, that's what today is. It's been over 5 weeks since the diagnosis and I am just beginning chemotherapy tomorrow morning.

The first major hurdle I had to overcome was the decision about WHERE to do the chemo. My husband was willing to give up his "best job ever" in Bruxelles so we could stay put in Virginia and do all of my treatment there. The thought that we would give up the life that we had been planning for for almost a year, the home in our little Flemish town of Hoeilaart, the kids' new school, didn't sit well with me at all. Once I knew that my prognosis was good, I felt very strongly that what I needed most from my family was that they continue on with that life in Belgium so that I had that life waiting for me. If there ever was a time that my husband proved to me that he loved me, it was in his relinquishing my care to my parents and sisters while he took the kids to Belgium to live. He agreed to be what I most needed from him - a single parent to our children while I received treatment in Texas. Tough decision you can be assured.

The second decision many of you will face is what protocol will you follow? Though I've been diagnosed a Stage IIa, we still don't know the lymph node involvement. My sentinel node biopsy surgery is scheduled for July 17. After that, I will know if I am facing radiation therapy after the masectomy surgery. There are many options you will face: surgery first; chemotherapy first; surgery sandwiched in between chemotherapy treatments; reconstruction during masectomy or after. These are all very personal decisions, some which are specific to the location and type of your cancer. Your surgeon, oncologist, plastic surgeon, and radiation oncologist will all have an opinion!

If you happen to be taking your treatment at a center such as MD Anderson, or in my case, Baylor, you may be given the option of being involved in clinical trials. Because I am on a time schedule, trying to reduce the time I am separated from my family, I chose to go straight to the established protocol for neoadjuvant therapy - meaning I am having chemo first. Odds are that with the location of the tumor, I will still end up with a masectomy, but what have I got to lose in trying to shrink the tumor before removing it? A breast? For me, the other contributing factor to the neoadjuvant therapy was the psychology behind knowing that if my chemo is shrinking my tumor, it is also killing any nomadic colonies of the cancer that may have taken up residence in my bones, brain, kidney, liver etc. That will be powerful knowledge, because let's face it, no diagnostic test can detect a colony of 10,ooo cancer cells - they are simply too small.

Another issue I want to impress on women is that I have learned you must be your own champion. Though I made contact with the oncologist in Texas the week of June 15 to get an appointment, I let the surgeon's administrator tell me not to worry about scheduling a consultation appointment until I actually arrived in Texas on June 28. Mistake - if you have made contact with the doctor, schedule an appointment. Do not be consoled with the idea that you can get in soon - I had to wait over a week AFTER my oncology appointment to meet with the surgeon. The import of that was that the oncologist didn't want to start chemo until the surgeon had "laid hands on me" - an odd phrase in the best of circumstances! Once I met with the surgeon, after a week delay of my scheduled chemo, I then learned that they couldn't schedule me for over a week and a half for the sentinel node biopsy surgery - alluding to the fact that chemo would again be delayed.

I had absolutely been lulled into a false sense of security by believing that the surgeon's administrator understood the importance of moving through these stages quickly. Do not make the same mistake. I also believed there was communication between the two doctors' office - there had not been - all information was flowing through me, the patient. My lesson learned and herein passed on to you is to be vigilant and follow your own care as if you are the only person who knows everything going on in your case - it may be true and assuming otherwise may cause you unnecessary delays.

The most recent decision I made was to join the 21st century and become a blogger - a huge feat for an otherwise computer illiterate. My thanks to my sister Stacy for all her help! The bottom line for any woman who is facing cancer is to be proactive in your own care, don't make any emotional decisions, and have fun where you can! Fun you ask? Yes, absolutely! Tune in for my next blog - "Preparing for Chemo".