October 2, 2011 - Miscellaneous Thoughts

Some miscellaneous thoughts today.  I don't write as often as I did right after my diagnosis because I'm simply not feeling well.  Here goes...

Today is Sunday, October 2, 2011.  It is LIVESTRONG day.  The fifteenth anniversary of Lance Armstrong's cancer diagnosis.  I'll be wearing my yellow LIVESTRONG t-shirt today.  He is an amazing advocate for cancer research, care, advocacy, and so much more.  I contacted the Lance Armstrong Foundation and an advocate contacted me personally to speak about my diagnosis, and provided me with resources.  Thank you, Lance and LAF.

As I write this, I'm just turning on football and am happy to see all of the coaches, referees, football players, cheerleaders, and fans wearing pink to acknowledge Breast Cancer Awareness Month.  It's the 25th anniversary of National Breast Cancer Awareness Month.  I love it.  Yesterday, at the Idaho State University homecoming game there were even ISU players with hot pink gear on.  It was awesome.  ISU lost, but put up a great fight.  It was exciting, great to be in public, and I had a great time with Bonnie and Essy!  

Also remember it's Domestic Violence Awareness month.  Here is a great article about breast cancer and domestic violence awareness month. Awareness is Strength: Breast Cancer and Domestic Violence  Just for you, Sarah.  So proud of the work you and your staff do for southeastern Idaho victims of Domestic Violence.  If you are in SE Idaho and needs services related to domestic violence, you can contact Family Services Alliance.  

So, I had a rough week.  I was only able to work 10 hours.  That is upsetting to me.  My major complaints are bone pain (mainly in my pelvic bones and OUCH), the dreaded muscle spasms in my back, and FATIGUE.  One day after being at work for two hours, I collapsed in my kitchen after hauling in a few bags and my purse from my car.  Not the way I'm used to my body reacting.   I know it won't be like this for long, but it is still frustrating nonetheless.  Tuesday...chemo...anxiety about it already.  It is my first Taxol treatment.  It has to be infused very slowly in order to avoid adverse reactions.  

But, on to some good things that happened this week.  Some good, some bad.  The good first!  Most importantly, they didn't have anything to do with cancer!  

1. I was contacted by Michael's unit in Utah.  They are nominating me to go to Washington, D.C. to speak at the Congressional Military Family Caucus Summit to speak about my husbands injury and the difficulties we've encountered navigating his care.  If I do somehow get the nomination, I would go to D.C. at the end of this month and be speaking to members of Congress and high ranking officials from the Pentagon.  Wow! It would be on my non-chemo week or I wouldn't consider it.  We'll see.  I hope to find out soon if I'm going or not. 
2. I am a contributing author to Physician Practice Management, 2nd Edition, Dr. Lawrence L. Woper, and I was contacted by the publisher this week.  I worked on a chapter about Disaster Preparedness and am the lead author of the chapter with a group of people from around the country.  It is set to be published in May 2012.  They were requesting my bio for the book.  Too cool. 
3. I went to see my daughter perform in a halftime performance called "Extravaganza."  It is done every year by junior and high school students to acknowledge our nation's veterans.  It was AWESOME.
4. I went to ISU's homecoming parade and game.  I got to see Conor perform in the marching band for the first time.  Today is the day after and I'm exhausted - but it was worth it.  
5. Olivia performed in Utah at a marching band competition and they took 2nd place.  My Dad and Ellen went and supported her and Dad took photos!  Can't wait to see them. 
6. Michael is coming home soon!!!  I thought he would be home next week, but I've decided it will likely be the next week. Things related to his discharge typically take longer than I want.
1. Unfortunately, Michael was diagnosed with what I think is likely considered severe sleep apnea.  When on his back he stopped breathing 57 times in an hour for more than 10 seconds each time.  That's almost once a minute.  He will be fitted this week for a C-Pap machine.  He's upset about it, but I think it will help him a great deal.  Perhaps his cataplexy will go away.
2. Equally disappointing, he went to UCLA and met with the neurosurgeon.  He said he does believe Michael continues to have a CSF (cerebrospinal fluid) leak, based on his signs and symptoms (PAIN).  But, he doesn't want to perform another major brain surgery at this point.  He wants to wait until he leaks more fluid.  We were hoping for a surgery to perform a miracle for him. 
7. Michael is coming home.  I know, I already said that, but I'm so excited about it.  I haven't seen him since my breast cancer diagnosis.  I've missed him so much.  I'm thrilled he'll be here to make some of Conor and Olivia's performances.  He didn't see any of Olivia's performances last year and she was devastated. 

I'm heading to see the movie 50/50 today.  Looking forward to it.  I have something in common with it.  The oncologist said without chemo and radiation, my chances were 50/50 as well.  It's getting great reviews.  I'll let you know my thoughts on it later!

BRCA2 and Henrietta Lacks

So, I've had some time to process my BRCA2 positive test result.  I had somehow convinced myself the tests would come back negative despite the fact my mother has had cancer twice and my grandparents on my father's side had breast cancer and prostate cancer.

I received a packet of information from the Myriad Genetic Laboratories, via the Cancer Center, on Thursday, September 15, 2011.  It says, "the results of this analysis are consistent with the germline BRCA2 frameshift mutation 4075delGT, resulting in a stop codon at amino acid position 1284 of the BRCA2 protein."  It also says,  "deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70."

Well, I've become part of the 84% statistic already.  I've decided I will have my ovaries removed and will not become a statistic for ovarian cancer.  I will likely also have a bi-lateral mastectomy to reduce my chances of getting breast cancer again.  The information indicates a cancer risk reduction of 90% with a mastectomy and 96% for oophorectomy (removal of ovaries).

As I mentioned in previous posts, it increases my risk of other cancers as well.  The information says, "some families also have an increased risk of pancreatic tumors and melanoma.  Consider full body skin exam for melanoma and investigational protocols for pancreatic cancer."  This is something I will also speak to the oncologist about on Tuesday.

I am currently reading, The Immortal Life of Henrietta Lacks, by Rebecca Skloot.  (Thanks to my friend, Destiny, it is an awesome book.)  The cover of the books puts it simply, "Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry.  More than twenty year later, her children found out.  Their lives would never be the same."

Henrietta was diagnosed with cervical cancer in 1951.  And, without knowing, they took healthy and cancerous tissue slices from her cervix.  For years, researchers had been trying to grow cell cultures in laboratories.  Henrietta's cancerous cells grew - and grew and grew.  The book says there is no way to know with accuracy how many of the "HeLa" cells have been grown, but they estimate they would weigh more than 50 million tons.  It's incredible.  I'm amused by it because her cells have been instrumental in cancer research. The book says they assisted in developing chemotherapy drugs like Taxol, which I will begin receiving in about 16 days.  Thank you, Henrietta.

The book also says, (the cells) "helped to developed drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating...Henrietta's cells have become the standard laboratory workhorse."  Amazing, right?!

Disturbingly, her family knew nothing of how her cells were being used for quite some time.  Millions of dollars were being made with her cells and her family received no compensation.  Skloot addresses other unethical studies performed on humans such as the Tuskegee syphilis study and the research performed by seven Nazi doctors on Jewish people, both studies done without the consent of the individuals, which brings back fond memories of my medial ethics class.

I may tuck myself into bed early this evening and try finish the book.  It's extremely sad and fascinating at the same time.  I look forward to learning more about her family and whether they were ever given any financial compensation, and what other studies were done with her cells.  Oh, I forgot to mention her cells were sent into space with astronauts to see how zero gravity would impact cellular growth.

Changing subjects - I walked up City Creek for the second time since I started chemo this afternoon.  Olivia and I designated today as "lazy day," but I just really wanted to get out and enjoy the cooler temperatures and a little sun.  I donned one of my favorite new pink shirts, shorts, and shoes.  No hat today.  I was only able to walk uphill 11 minutes.  A far cry from last year when I hiked 6 miles up to the top of Kinport Peak.  Argh.  It's okay.  I took my time and listened to the birds, watched my beloved dragonflies zipping around, and inhaled the clean breeze which had a hint of fall in it.

Unfortunately, I'm still being afflicted by extremely painful back spasms.  As I mentioned after my first chemotherapy session, I talked with the oncologist about it and I underwent an MRI to make sure cancer had not spread to my back.  Luckily, no cancer was found.  But, on day 10 after chemotherapy, without fail, the back spasms return.  It is hard to describe.  It doesn't seem to be affecting my musculature.  It seems as if I have contractions in my spine.  I feel a pulsating pain from my hips to the back of my head that lasts for a minute or two.  It take my breath away.  I'm reluctant to tell the oncologist about it on Tuesday, because I DO NOT want them to reduce my chemotherapy drugs further, but it is equally concerning and painful enough that I'm going to have to bring it up once again.

Hey, I did have a great achievement this week.  I was asked by a colleague to tape a session on our local television station about Breast Cancer Awareness Month.  October is the 25th anniversary of National Breast Cancer Month.  I was more than happy to.  Because the PMC Cancer Center staff is so integral to my care, I asked that someone accompany us on the panel.  Jennifer Robinson, PA, accompanied us.  We talked about breast cancer prevention, screening, forms of breast cancer, my journey and the Women's Health Check program, which screens women with low income for breast and cervical cancer.  The show will be aired twice a week during the month of October.   I will forever be an advocate for breast cancer awareness and was honored to be asked to tape the show!

So, now, to enjoy the next two days to the fullest. Tuesday is chemo.  My fourth and last session of Adriamycin and Cytoxan.  Each treatment has made my side effects worse, so I'm anxious about it.  I continually remind myself the drugs are killing the cancer cells.  My body will become healthy again!

Happy Autumn, everyone!