Healthy Eating - Healthy Lifestyle - So Important

I'm reading about ways to reduce my risk of recurrence.  The answer is to eat healthy and exercise. 

American Institute for Cancer Research - Compilation of Expert's Recommendations:

http://aicr.convio.net/site/PageServer?pagename=research_science_expert_report

1. Be as lean as possible without becoming underweight.
2. Be physically active for at least 30 minutes every day.
3. Avoid sugary drinks. Limit consumption of energy-dense foods.
4. Eat more of a variety of vegetables, fruits, whole grains and legumes such as beans.
5. Limit consumption of red meats (such as beef, pork and lamb) and avoid processed meats.
6. If consumed at all, limit alcoholic drinks to 2 for men and 1 for women a day.
7. Limit consumption of salty foods and foods processed with salt (sodium).
8. Don't use supplements to protect against cancer.
9. * It is best for mothers to breastfeed exclusively for up to 6 months and then add other liquids and foods.
10. * After treatment, cancer survivors should follow the recommendations for cancer prevention.

*Special Population Recommendations

Little bit of Everything

Hi everyone,

I haven't posted in a while, so this one will be a mixture of all kinds of topics. 

Just fyi, my "A" key is sticking and so, I predict lots of missing "A"s.... :(

GENETIC COUNSELING
I met with the Genetics Counselor, Dr. Brooks, on Tuesday.  It was fascinating and she is fantastic.  I'll find out my results in about 2 weeks from Tuesday.   The 3 possibilities are:  Positive - meaning I have the BRAC 1 OR BRAC 2 gene mutation and therefore am at approximately 50-60% chance of having ovarian cancer and a very high risk of more breast cancer....mastectomy and ovary removal.    Negative - the opposite, but the downside is it leaves me wondering what caused my cancer and waiting to see if it strikes again.  And, drumroll please, there's a 3rd possibility that is called VUS "Variance of Unknown Significance" which means that there's something different about my genes but they cannot (yet) determine if it is a good thing or a bad thing.  Hmmmmm....I will be very frustrated if I get the VUS result!  But it kinda sounds like something that would happen to me and my indicisive self.

BALDY BALDY BALDY
A week or two ago, Charles and I went out to eat with dear friends and I struggled on the way there to decide whether I could go in the restaurant bald.  You see, I am very, very tired of wearing hats and my wig because of the heat and the constant hot flashes I have.  So, that night, on the way to meet at the restaurant, I literally to a hat on, took it off, put it back on, took it back off, trying to arrive at the place where I was able to decide not to wear anything on my head.  With Charles' support and encouragement, I walked in there bald, and my friends were totally fine with it....very sweet and kind.

The next day, I went to Wal-Mart and Kroger bald.  These experiences took all my might, but I am very glad I did it.  Most places, now, I go bald, and I'm surprised that very few people seem to even show that they notice.  I know they do, but it isn't obvious.  AND it would be just fine with me if people asked about my baldness....really.   I am hoping that one of the residual effects is that I can help pave the way for other ladies to feel comfortable - especially in the dog days of summer and in the land of heat flashes - going out bald in public.   There are ladies who paved the way for me....like Pam Britton, one of my breast cancer mentors, who has the cutest little pixie face (lucky for her) and ladies that I was almost afraid to look at when I first started going to the oncology center....as time went on, I started thinking and wondering if I could do that....and now, thanks to my friends and family not running in the other direction, I have come a long way.

I have some good memories to treasure of things people have said and them asking to rub my head.  :)  I would totally rather that than someone try to act as though they don't notice because, hello, I have a big ol' bald head.

FATIGUE
Mercy!  I am tired.  This go 'round has not let me get my energy back YET.  It probably has something to do with my taste buds affecting things, too.  I eat less when my taste buds are not working right...that lasted way too long this time....so, I look forward to more energy soon.  Aches have creeped their way in, which in my experience is odd for this time in the cycle.  I had a friend here to help and bring delicious supper last night.  She included requests for me in her blessing of the food and it was so nice to hear someone pray for me.  It reminded me that many of you are praying for me.  That is powerful, especially in the light of my new understandings about my type of cancer.   Later in the evening, she said that she had expected me not to have much energy, which called my attention to what I know all of us do, you just push on, doing what has to be done, even if you're dog tired.    That's something specific I'd love your prayers for....energy!  I can't wait to have it!

DADDY
Daddy continues to have a hard time seeing me bald.  I can imagine a bit of how he feels.  I think about if Macy or Molly had to tell me news about cancer, and then I watched them deal with the fun of chemotherapy, it would be indescribably hard, and I would want to go through it for them.   I know he feels that way, and I've had friends who have expressed that selfless thought, too.  I know there are many layers to what he must think and feel about this whole thing.

The other night when he stopped by with lots of vegetables and to visit, my knee jerk reaction was to go grab a hat...but instead, when he walked in the door,  I grabbed his hands and put them on my head and rubbed them all around my head.  I told him I wanted him to be okay with it and that I truly had come to terms with it.   After all, it is a temporary thing!  Hope I didn't traumatize him!  :)

YOU
Okey dokey, now, your reward for reading this blog entry is some FREE ADVICE!  Some is repeated from a while back.......

• Live in the moment today!  Enjoy what is right in front of you. 
• GET A MAMMOGRAM.  A friend of mine at lunch yesterday told me of her close friend whose breast cancer was found last year through a routine mammogram.  CAUGHT EARLY ENOUGH that she didn't need to go through chemotherapy (that was also due to other factors).
• If you have ovarian, breast cancer AND/OR prostate cancer in your family...especially if you have two different generations having any combination of those, MAKE AN APPOINTMENT with Dr. Karen Brooks at the USC Specialty Clinic - or your local brilliant genetic expert -  to have a conversation about your possible qualification for genetic testing. 
• When your annual enrollment period comes up at work, seriously consider adding a cancer policy.  Also, if you have the opportunity, like we do in Kershaw County School District, opt for a Flexible Spending Account which allows you to have pre-paid visa card with any amount you choose---I do my deductible amount----(taken from your pay divided by 24 times I believe).  I have been thrilled that I did that because I have a way to pay for the big chunks that help my family meet our deductible (which of course we do practically at 12:01 on the first day of the insurance period).  I can explain it more to you, but it has been a life saver, and I wish I had know about it earlier.  Thank you, Susan Elliott, for helping me with this!  YOU are  life saver!
• Do BREAST SELF EXAMS (BSE) every month to know what YOUR normal feels like....so that you will be aware if anything changes.
• Even 20 year olds get breast cancer.  Check into getting a mammogram.  Make it a habit to do BSEs.  
• The way to qualify to be a LUCKY DUCK is to be ON TOP OF YOUR HEALTH. 
• Sermon is now over.   Ha!

:) Have a great day.  Thanks for reading my blog :)

Learning about Triple Negative Breast Cancer

I am reading a little more about my type of breast cancer and realize that scientists really don't know much about this 'newly' discovered sub-type of breast cancer.  There are sub-types within the triple negative category, that were just recently discussed in a June 2011 journal article. 

http://www.sciencedaily.com/releases/2011/06/110627184000.htm

I am thanking the Lord that I found my cancer before it spread to the lymphnodes.  I just read a statistic that said less than 30% of triple negative breast cancer patients with metastatic cancer survive more than 5 years. 

Several people have asked me why the doctors are doing chemotherapy since they were able to get clear margins, which means they got the whole tumor.  My answer has been that they use it as 'insurance' to be doubly sure.....and I now know that there's no way to know if individual cancer cells have begun making their way into other areas of the body, so the goal of chemo is to kill those cells.

I'm beginning to learn that it is such a new area being explored in the cancer world and that funding for research is very important.  The Susan G. Komen Foundation has partnered with the Triple Negative Breast Cancer Foundation to fund a think tank in hopes of coming up with therapies that are more effective against triple negative cancer.  That gives me some much needed encouragement.

As I read, I consistently see that triple negative cancer is more aggressive, harder to treat, and more likely to recur than most other types. 

You may be thinking - "stop reading".  But, here's the thing.  When I go to my appointments with the surgeon and with the oncologist, there is no education (except by the nurses who are wonderful).  There is hardly any conversation at all.  It is only because I am educating myself that I know what I know about triple negative breast cancer.  Don't get me wrong.  I think that my doctors are very, very skilled and up to date with research, which is the most important thing.  But, I feel I need to know what I'm up against.

As Charles and I were driving to Target tonight, I just kept looking back at the girls and thinking how terrible it would be if I didn't get to be with my girls for as long as I wish....it is a terrible thought that I can't entertain for very long.  But it makes me want to journal all the more for them my thoughts about all kinds of things...which I'll spare you all. 

I go for Chemo #4 tomorrow...and I hope to meet another amazing survivor like I did last time that gives me a new dose of big time hope. 

Thanks for reading my blog.  I hope today for you is a great day and that you can truly live in the moment.  I'm trying to do that more and more and it is fun and wonderful!

Genetic Counseling & Testing

I got good news yesterday that I will be able to have the blood test done to see if I have the BRAC-1 or BRAC-2 gene mutation.  I was concerned that I was going to have to further 'qualify' by having the right combination of family cancer history.  But I learned that I do qualify already and will hopefully learn the results two weeks after the blood test....my appointment is in two weeks.

I asked the doctor yesterday what would his recommendation be if the test comes back positive.  He said that I have a 7% chance of getting a positive result and that he really doesn't think I'll need to worry about it.  But, if I do get a positive, he would recommend a mastectomy and removal of my ovaries.

7%.......this is a time I really don't want to be special!  :)

Hope you're having a good day!
Thanks for caring and reading my blog!

I started writing this about 2 weeks ago...I'll come back and add more when I learn more....


Well, I've had some time to read and educate myself a bit about my specific type of breast cancer - "triple negative" breast cancer.  I must say, I'm a bit scared about the words "rare", "aggressive" and "recurrence". 

I found this website:  http://www.tnbcfoundation.org/  which was founded by friends of a 35 year old woman who died 2 1/2 years after her diagnosis of triple negative breast cancer.  It is a very helpful website with the most information I've found so far.

When I first was learning about my situation, my head was spinning and didn't stop....I was teaching school....having multiple surgeries....taking care of my twins, and there was very little time to read about it....and then, I remember trying to focus and comprehend what I was reading, and I couldn't.  Now, I have some time, and realize that it is important that I educate myself because my type of breast cancer is more likely to recur and it is possible that I have a gene that puts me at high risk for ovarian cancer.  I will be requesting the blood test that will tell if I have the gene that puts me at risk for ovarian cancer...it is called BRCA1 and if I have that, my risk is 40-50%. 

I'm calling tomorrow to make an appointment with Dr. Brooks for genetic counseling that may (hopefully) lead to genetic testing.  I'd like to know if I have that gene mutation!

This category of triple negative breast cancer has only been (relatively) recently defined, and there is still a lot to learn.

On a more upbeat note, I've learned in my late night searching about eating healthier to give your body the tools it needs to stay healthy.  Sign me up for that! 

Here's some websites that appealed to me:
http://www.40bladesofgrass.com/

It Takes a Village - Very True!

Hi everyone,

I am beginning to realize that I'm entering a new phase of my treatment.

Here's what I mean:

• more fatigue...tiredness...weakness
• more tummy trouble
• new side effects, such as intense itching & swelling of hands at joints...which turned into a severe allergic reaction to one of my chemo drugs
• maybe a little bit o' depression sinking in....I'm fighting it
• I'm tired of wearing wigs and hats....so I'm going around bald more often.... :) 

So, what I'm getting at is that I need more help now than I have needed in the past.

Things that are harder for me now (during the first 8 days of a treatment) :

• dressing the girls or putting them in their pajamas
• given them a bath is absolutely exhuasting for me
• vacuuming
• feeding times are becoming more difficult

Here's the dates that I need to ask for help following my 4th treatment:

*I hope that two people could sign up for the same time because it is a lot more fun that way, trust me!

July 20 - Wednesday - 11:30 - 3:30  Thank you AF & KA!   3:30 - 6:30 Thank you LR and NC!
July 21 - Thursday - 11:30 - 4:30  Thank you KB and JB!  4:30 - 8:30 Thank you LE and TE!
July 22 - Friday - 12:00 - 4:00 Thank you KW and TN!
July 23 - Saturday - 12:00 - 3:00 Thank you TP!

*If you get sick or have a sick family member, please let me know before coming so that I can find a replacement for you.  Thanks so much!

I am so thankful that I have you in my life.  Having  people who are willing to come and help me means so very much to me.  I truly mean it and appreciate you checking my blog.  I hope to be able to at least pay it forward in the near future. 

Much love,
Angela

*Update - My severe (crazy, painful and ugly) allergic reaction is under control and diminishing as I type this.  They hooked me up and gave me IV steroids and benadryl along with a prescription steroid.  I was so impressed with Nurse Anne's quick response to my messages and being seen immediately.  They told me they hadn't seen a reaction to that degree before!  I felt very special.  Ha ha.  I generally do fall in the 'rare' category.

*Special Request - If you are praying for me, please put Charles' name in your prayers - ahead of mine!  He has so much to deal with....a bald wife....a weak wife...a wife who has gained weight.....a wife who can't wait to see him come through the door so he can help with the girls....an emotional wife.....all kinds of stuff like that.  I try to imagine what it is like for him, but I can't.  He seems to be doing fine, but some support for him would be awesome.  Thanks, y'all.

3rd Chemo Treatment

The night before my 3rd chemo treatment, I spent a lot of time researching my type of breast cancer, "triple negative" and learned some things that really caused me some concern.  I blogged about it but haven't posted it yet.....

Funny thing is, all those concerns were brought down many notches when a lady approached me as my friend, Sharon and I, waited at the reception desk.  This lady approached me and was saying kind things about my quilt, made by my teaching partner and friend, Jakki.  As I told her about it, she asked me how I was....and then shared with us that she was diagnosed with cancer in 2000 or so, and that it had spread to several (like 5) areas of her body.  She did EIGHTEEN MONTHS OF CHEMOTHERAPY.   I cannot fathom that.  She was there for her regular 4 month check up and was doing great.  She looked fantastic.

Well....my little 3.5" tumor....removed with clear margins.....faded again into the backdrop.

I was very thankful to have my college roommate and faithful, macaroni-and-cheese-makin', friend, Sharon with me.  She is a calm soul who has always been there for me......easy to talk to......sweet and hard headed.....I'm so glad she could go with me!

Me and Sharon....under our warm blankets!  Nice!

Sharon made sure that the nurses were doing things correctly..... :)

Pam, chemo-veteran, came to visit me during this treatment!
What a treat!  I know it isn't fun to come back into this place once you've finished.
She runs triathalons now.....mercy!  I'm so impressed by her!

My new, sweet friend, Norma! 
Thank you for your friendship and help! 

My sister, Ginger, came down from Massachusetts to help me with my three hardest days of treatment #3....and she did such a wonderful job.   She allowed me to walk around with my bald head....rest for hours at a time....while she tended to and loved on Macy and Molly.  She gave up time with her son and husband to come here and work hard to let me rest.  It was so incredibly helpful! 

Ginger worked so hard while she was here....selflessly doing anything I needed....
bathing two one year olds is exhausting,
and she did it with a smile and giggles!

Molly has been waving for quite some time now, but it also is her looking for a high five!
Daddy and Mary came to visit and were treated to a wonderful, huge, homecooked meal, thanks to
sweet Janette Smith.... and Ginger was able to visit with them for a bit, which was great.

Ginger was determined to make helping me a priority.....she didn't want to leave
or make plans to do anything away from our house....she even went with me to
take the girls to the doctor, which is HUGE HELP.....
I can't thank you enough, sis!  Love you