It is more important to know where you are going, than how long it takes to get there.

Saturday, April 17, 2010

All Wigged Out...

For the life in me, I do not know why I was so wigged out the night before my Mass General appointment. It was only an appointment! It's not like I was going to receive any bad news that I didn't already know. I was a bundle of nerves - not the good kind like the first day of school or Christmas Eve, more like the dreaded sales meeting or (business) road trip. As I mentioned before, I only slept 3 hours - what a head case I was!

Mass General in Boston is so large that it has its own police force. When we arrived, there were Mass General policemen all over. We thought someone of importance must be arriving, but then we realized it was just to handle the incredibly large volume of people. We went into the wrong building, and had to walk around the corner to another building. This place is massive!

The cancer center takes up three floors. The breast cancer's doctors' offices are located just past the breast cancer boutique that sells hats, scarves, wigs, specialty bras, specialty swimsuits, and clothes. We arrived at 9:30 for a 10:00 appointment. Unlike a restaurant where you might get in early, we sat in the waiting room until 10:45. At all my other appointments I read a book. For some reason, I could not read. I almost felt frozen in my seat. The waiting room was nicely decorated with interesting art on the walls. Two large portraits were made completely from buttons. The carpet was interesting; it looked like a handknit sweater using slubby yarn. One wall was all glass that looked onto the corridor and outside. A 1,000 piece puzzle was sitting in pieces on a table, waiting for someone to put it together. During our time in the waiting room I saw at least 8 different people give the puzzle a try, but didn't see too much progress.

Speaking of wigged out, during the 1 hour & 15 minutes in the waiting room, besides critiquing the decor, I passed the time in my mannequin-like state watching people come and go. I tried to figure out who was wearing a wig and who wasn't. I know, strange. (All along, I have told everyone that even though insurance covers the cost of a wig ($250-$thousands), I am not going to wear one. I am strictly a baseball cap and scarf girl. I saw two bald women in baseball caps, and they looked great.) I think I could discern between a "good" wig and a less expensive wig. The cheaper wigs have a very blunt, stiff look to the end of the hair that makes it look the hair on a doll. It also doesn't seem to move much. One woman who was young, thin and dressed well, had a very nice long wig. I could barely tell it was a wig until I saw the back and it was separated just a little bit. This must have cost her some big $$$. She looked great. Now, you should know that I wasn't glaring at everyone like a whack job, just my own clinical observations. Seeing the average age in the waiting area, I know why I was called YOUNG by the doctors. One woman was telling a tech that she just turned 90. She was full of spunk, looked fabulous, and was there all by herself. You go girl!

Dr. T. Best, formerly known as Dr. Top Dog, spoke to us at length about reconstruction. (I just don't think the name Top Dog fits after meeting her. T stands for Thee.) She is advocating for reconstruction at the same time as sugery because she can save the skin during surgery, making for more natural. During surgery she makes an incision straight down the side from the middle, removing the center - nipple and all. (I'm getting a little embarrassed, but in the spirit of educating, I will continue.) It sounds like there will be very little scar tissue, and will look very normal, other than it is all white. A very small area about the width of a finger will be numb, and remain that way forever. She said that after a while the body adjusts, women don't even notice the numbness. A plastic surgeon will perform the reconstruction and work along side Dr. T. Best. Dr. T Best said that she has some favorite plastic surgeons, and that she will set me up with one. I have an appointment on Tuesday to meet the surgeon. There are a couple of different techniques for reconstruction, and I am curious to hear what the plastic surgeon says. I know that one version is a silicone implant and the other has something to do with tunneling your stomach fat under the skin, up to the chest. You get a two-for-one: a tummy tuck and new boob all at the same time. More about this later next week.

A genetic counselor came in to speak with us too on Thursday. She has the results from the BRCA 1 & 2 tests, but she said that there is one more test that most medical people outside the research field are unaware of right now. The BRCA1&2 tests are 85% accurate for screening a genetic mutation that leads to breast and ovarian cancer. A new test has been developed that will make up 14% of the uncertainty, resulting in a 99% accuracy. Fortunately, the the same lab that performed the BRCA screen will also perform this screen, and they can use the bloods samples from the previous screen. I only had to sign a piece of paper for the test to be done. Easy.

Mass General is a teaching and research hospital. I signed up for one study that only involves answering a questionnaire on an electronic tablet each time I come in for an appointment. I also agreed to another study regarding fatigue and radiation therapy that involved blood tests and questionnaires, but then I discovered that I would be required to have treatments in Boston. Since I am going to have radiation (if needed) in Danvers, I cannot participate in the research. I think there is one more study, but I can't remember. Maybe it was a study on how stress affects memory!

I had my arms measured by an infrared machine. Several measurements will be taken throughout the course of treatments. I think this has something to do with lymphedema, a swelling in the arms that can be a side affect of a mastectomy. I asked the tech if anyone's arms ever get longer. She said that everyone asks that question, and she hasn't seen it yet.

About 3/4 the way through the 7 hours of appointments an LPN which is the same as a LVN on the west coast, came in and offered us snacks and water or juice. Nurse Flo Nightingale also brought a packet of information on resources available to cancer patients. The floor below has a lounge and resource library for cancer patients. Books can be borrowed from this library. Also enclosed was a calendar listing wellness services, education workshops and support groups that meet in the lounge and meeting rooms. Some of the services listed on the calendar were stress and anxiety management, knitting hour, relaxation through meditation, chemotherapy-what you should know, and many more. Nurse Flo gave me a booklet to help children cope with their mother's cancer, oops, breast cancer. The booklet lists the phone number of the children's psychiatry department that will answer any questions and offer assistance. Nurse Flo had a great spirit and personality. She is the right person for this job.

The best part of the day was making it home in time to take Molly to soccer practice in Essex. She had a game today, and scored her first goal!

Whacky thought for the day...
I am afraid that I am becoming nocturnal because I sleep more soundly during the day than I do at night.

Shout out...thank you Bubble Wrap for taking Molly last night at the last minute so that Chubba and I could go out - a very rare treat! You're the greatest!

1 comment:

  1. To set the record straight you are crazy; you are crazy creative, crazy fun, crazy positive!!!! Pink is good! XOXO Chubba