Sunday, July 19, 2009

Telling The Family

I am one of those people who don't cry over spilled milk. The most important thing about spilled milk is cleaning it up, then if need be, determine how it got spilled so it doesn't happen again. I sort of approached my diagnosis with this attitude as well. I never asked why me, instead I went out and bought several books immediately so that I could learn as much as I could before meeting with any doctors (more on that in a minute).

My biopsy report revealed that I had an 8mm ductal in situ mass in my right breast, best guess at this point was Stage I since it was small and caught early.

My husband Greg and I decided not to tell anyone until we knew more information and understood what we were in for. The books were invaluable for us. The logical programmer in me, developed a decision tree with possible outcomes that I used for my first oncologist appointment. This proved to be extremely valuable in our understanding of the decisions we had to make.

While I was reading away learning as much as I could, my youngest son Shawn was a junior in high school and preparing for his final exams. He also was scheduled to attend a learning conference for 2 weeks the end of June in Wash DC. My oldest son Robbie, had just graduated from college, had a full time job and lived at home.

As I mentioned previously, I felt all alone with this diagnosis. My gynecologist didn't provide much direction or recommendations either. After reading my books, the thing I realized that was very important was having a team of doctors treat me (surgeon, oncologist, radiologist,etc) and getting a second opinion on the initial tumor biopsy (pathology). So I started to look for a team approach in the Wash DC metro area. Believe it or not, at this point (I was 48 when I was diagnosed) I didn't know anyone in my circle who had gone through breast cancer. I had a friend who's son's teacher had just finished up with treatment and she was kind enough to be my mentor. In searching for my team, I wanted doctors who specialized in breast cancer not a general surgeon or general oncologist. I didn't want the doc who removed my gallbladder removing my cancer.

To make a long story short, even with all of the cancer centers in the metro area I couldn't find one that used a team approach to treating breast cancer with breast specialist. My very dear friends live in Houston TX and he was an administrator at MD Anderson (the number 1 - or 2- depending on your source ;-) at the time. He was very good friends with the chief surgeon and they made me their priority. At MD Anderson they only treat cancer in teams and speciality teams at that. I had one of the best breast cancer surgeons perform my lumpectomy. Before I even arrived, they wanted my pathology from my biopsy to review (served as my second opinion) and found something that wasn't reported on my initial report. The team meets every Tuesday to review cases and they reviewed my reports before I even arrived. Post surgery, while I was recovering with my friends, the team met the week after my surgery and agreed on my treatment course. It was documented so I could bring it back to DC and share with my oncologist. The final tumor pathology confirmed there was no lymph node involvement and I was Stage I, what a relief!

All said and done, we were in Houston for about 12 days with recovery and waiting for final tumor pathology and praying for clear margins. I didn't want to go that far away from home for treatment but I never had such primo medical care in my entire life. I am glad that we did it.

Once we decided that we were going to TX, we then told our family and friends. I also wanted to wait for Shawn's finals to be over. Robbie took the news matter-of-factly and Shawn was very upset. As it turned out, his conference and my trip to TX happened at the same time. He was ok with being there and thought it would take his mind off things. Robbie had his job to do that. I reassured both boys that this was going to be ok, I caught it early and at the end of treatment I would be as good as new.

There are many lessons I learned through all of this that are valuable for all; I will share these in future posts. For now, I had good news on clear margins, was headed back to VA and my sons and waiting to start the next phase of treatment (had 2 months off :-)

Stay tuned for what happened next!

Kathy

Sunday, July 5, 2009

More Shouting from Celebrate in Pink :-)

In April 2005 I had my annual mammogram which turned out normal, I took that for granted and didn't expect anything otherwise. I was looking forward to my oldest son's college graduation in May, another 'first' as a parent and was so looking forward to that proud day. On April 24th as I was eating breakfast, I wiped away crumbs that spilled down the front of my shirt. As I wiped right down the center of my shirt, it felt like I was bruised. Upon further inspection, there wasn't a bruise, it was a pea size lump that hurt like a bruise. The lump was located on the right side of the sternum bone, kinda where your lymph nodes would run. I immediately became alarmed and thought it might be lymphoma as that is what took my mother's life. As it turns out, it was in fact breast cancer. The tumor wasn't detected in my April mammogram because of where it was located. So, as I write this, I want all of you to be sure to include both sides of your sternum when you do your monthly self exams. If it weren't for being a messy eater that day, I'm not sure I would have found my tumor so quickly.

For those of you who have been through this, you know the drill. You start out with an ultrasound that leads to a biopsy. Of course, getting in for the test and waiting for the results is the hardest part. So, as I went to my son's graduation, I was in the waiting to get in for a first appointment. As it turns out, that was a good thing because I am a gambling gal and was thinking optimistically that I will not be that one out of eight so I didn't worry about it at all. We had a great time at graduation with family and friends and no one knew anything about it as I was certain there wouldn't be anything to tell.

By the end of May, I had completed my ultrasound and biopsy and the Friday before Memorial Day I got the call, you know, the one you are certain they will say "it's benign, nothing to worry about, have a great weekend". Well, that wasn't my message. It was more like, "I wish I had better news but wanted to let you know as soon as possible, yada,yada..." you are on your own...I wasn't prepared for that at all. Where was my "everything is fine" line, I was cheated! I wanted that message, surely you have mixed up the results with someone else...

That was the wake up call I had to answer...how was I going to handle this news? Well, the good news is, I had a long weekend to get used to it. The bad news is, it was my news. Needless to say it wasn't the best Memorial Day weekend I ever had!

Stay tuned to hear about the next steps I took and how I told the family...

On a brighter note, getting to 'today'...we had a fantastic 4th of July weekend as we spent it with family at our 47th family reunion!! Yes, you read it correctly, 47th!!! It was great, we are already planning for the 50th!

I hope all of you had a wonderful weekend and are blessed with friends and family that you don't take for granted. It's true that you don't get to pick your family, but it is also true that your friends are gifts to yourselves :-)