Breast Cancer Survivorship & Loads of Local Support Options

You may recall a couple of earlier posts this year on Dr. Amy Shaw, who specializes in breast cancer survivorship. Well, today I met with Dr. Shaw again. This time it was at the encouragement of Dr. Ian Anderson, my Oncologist. You see, I've been experiencing quite a bit of bone and hip pain since starting the "five-year" pill so often recommended after breast cancer treatment. This pill is to help prevent, or reduce, the possibility of recurrence of the cancer.

Well, it was a very positive appointment, which gave me a bit of levity and put a smile on my face.

Dr. Shaw asked questions about my pain, when I had it, where it was being felt. Answers are: mainly in my hip, outer upper thigh area. Rarely radiates down the leg a bit, usually during long walks, or standing, lasts throughout the day after these activities and interrupts sleep. Often requiring some pain meds.

From the questions and answers, and the range of motion tests she performed on me, she had this diagnosis and plan for healing --

Physical Therapy! 

• My hips are fine (stop worrying you will need a hip replacement someday).
• Pain is not from the medication, which normally causes intense elbow pain, or hand and feet pain or numbness. 
• She cancelled the Bone Density Test as she felt I did not need more radiation in just one year and that there was no need for it at this point in time.
• She said I had a very good range of motion.
• And she complimented me on my new Easy Spirit shoes. (A girl needs a compliment from time to time). :-)

So I am continuing my Exemestane daily, which actually seems to give me less pain than the Letrozole (if any, now, after learning more at this appointment). I will continue my walking and keeping up the exercise.

While there, we talked about some of the programs posted on the bulletin board of the exam room. I mentioned how I seem to be growing my circle of cancer friends, much to my dismay. She mentioned how breast cancer affects 1 in 8 women during their lifetime. So I asked about the Wednesday Education & Empowerment program on Chemo Brain.

Then I noticed the flyer on the Second Annual Cancer Journeyealth Nuturing Ourselves, Loving Ourselves program. One which I saw last year but was unable to attend because Gaige M. Emery entered our lives that day. It is a one-day community event dedicated to providing those touched by cancer and their caregivers with conversations, information and nurturing experiences that complement the healing of body, mind and spirit. Looks very informative. Hope I can make it this time.

And lastly I made note of the monthly Breast Cancer Support Group program.

Then Dr. Shaw looked at me seriously and asked, "Do you know anyone without cancer?" I chuckled out loud and smiled broadly. Such a funny question but so appropriate these days. Click on the poster below for the correct link. The one listed on the poster is incorrect.

The Cancer Prevention Study-3 (CPS-3) is helping to create a world with less cancer... and more birthdays. This is a grassroots effort where local communities from across the country can support cancer research not just through fundraising efforts, but also by participating actively in this historic research study.

 

Well, that's enough information to share for now.

LIFE IS GOOD

Debbie... aka the cancer warrior ... AND SURVIVOR!!!

LIVESTRONG: 

• I AM STRONG • I AM HEALTHY • I AM LOVED •

One Year Down.... MANY MORE TO GO!

I am coming up on my first annual checkup after all my treatment. Those dates never leave you, diagnosed 1/10/11, Chemo ended 5/17/11, partial mastectomy 6/24/11, last rads 9/19/11. They stick in your head forever. How we count the days, and try not to count the days.

I see my Oncologist on October 16th, and will have a bone density scan in the next few weeks before then. I've had my blood work completed already and daughter NP tells me it all looks good. Thyroid is a little low, but my PCP suspected that so I had it run at the same time.

Since my Deductible is so darn high, I get these tests done under "private pay", which means they quote me about half the price of what it is when insurance pays, and I pay cash right then and there when I have the appointment. My plan is to not meet the $7,500 deductible this year, and I am nowhere near that. So to do it this way works best for now. I'll need to re-evaluate once January 1, 2013 rolls around. This lab work ran me $99.00. If I ran it through insurance, it would be about twice that and i would still be paying out of pocket. Who knows what the bone density scan will cost, but with all the hip pain I have since starting the 5-year pill Exemestrane, I think it is important to follow up with. Especially since the chemo I had was known to be hard on bones.

BUT HECK, I've almost got one year behind me of those five years needed for the Exemestrane. YIPPEE!!

So somewhere in all this, Jennifer (mentioned in my previous post) and I (and so many others like us) go on with our lives, try to get back to something normal, and pretend like nothing happened. Until that call comes with the reminder for the next followup appointment, or blood work, or mammogram, or bone density scan. I don't think others who have escaped cancer realize that just because we are past our treatment, we may not be back to the bubbly old self, taking days for granted self. There is still the underlying, "what if?" But I think it all makes us stronger, helps us to live life fuller, to do what we really enjoy, what is meaninful. I was complaining to a friend the other night how I felt guilty at times. She asked why? I said, "Well, some days I get up, dawdle around the house, and then do whatever I want." We both laughed. She thought it sounded darn good to her, especially since she works full time away from her home.

So....

ONE YEAR DOWN

50 MORE TO GO (give or take a few)

LIFE IS GOOD

Debbie... aka the cancer warrior ... AND SURVIVOR!!!

LIVESTRONG: 

• I AM STRONG • I AM HEALTHY • I AM LOVED •

VOTE TODAY - Keep A Breast Foundation

I had the sweetest comment on my blog the other day from a young girl with a history of breast cancer in her family. She has gotten involved with the The Keep A Breast Foundation organization to help focus her frustration with this horrible disease in a positive way. This youth-focused nonprofit organization educates about cancer prevention, early detection, and of cancer-causing toxins in the environment. She asked if I could help get the word out for them, and I'm happy to do so right here.

The Keep A Breast Foundation has been nominated for a 2012 Chase Community Giving Grant and the chance at the top prize of a $250k grant! The recipient of the grant is determined by votes and winning would mean that they could continue their awesome work in education. 

Vote for Keep A Breast to be awarded a $250K grant from Chase Community Giving: http://bit.ly/TrduBz

To celebrate they made a parody music video of Taylor Swift's "We Are Never Getting Back Together" to show everyone just how honored and excited they truly are. One of their goals was to shoot the video without any cuts, just like the original and shoot it in one take and they successfully did it after 10 takes! 

It is a geat video. Please take a peak by clicking here

We hope everyone enjoys the video and takes with them the important message that breast cancer (and any cancer in general) does affect young people and does not discriminate. We want young people to be conscious about their own health, and to be their own health advocates, to check themselves every month and never ever let anyone tell them that they're too young. Like ever. But to win, we'll need you to do more than watch this video!

A bit about Keep a Breast Foundation from their website:

From September 6th - 19th, 2012 we're going to need the help of all our supporters, friends and family to help share, tweet, post, re-blog, e-mail or whatever you do to EVERYONE you know. The more exposure we have, the better the chance at getting the votes we need!

If we are awarded the $500k grant, we'll be able to continue to educate young people about the importance of breast cancer prevention and removing toxins out of their daily life forever. Like forever.

Special thanks to Jana Bocchieri (singer) and Justin Bocchieri (musical production) for donating their time and talent to make this happen.

Official Chase Community Giving page:
http://facebook.com/chasecommunitygiving
http://fb.chasegiving.com

Connect with Keep A Breast!
http://keep-a-breast.org
http://facebook.com/keepabreast
http://twitter.com/keepabreast
http://flickr.com/keepabreast
http://stickam.com/keepabreast
http://foursquare.com/keepabreast
http://keepabreast.tumblr.com

About The Keep A Breast Foundation:
The Keep A Breast Foundation™ is the leading youth-focused, global, nonprofit breast cancer organization. Our mission is to eradicate breast cancer for future generations. We provide support programs for young people impacted by cancer and educate people about prevention, early detection, and cancer-causing toxins in our everyday environment.

The Keep A Breast Foundation™ is headquartered in the United States as a 501 (c) (3) nonprofit. We are supported in fulfilling our mission by international partners Keep A Breast Canada, Keep A Breast Europe, and Keep A Breast Japan.

Cancer Friends

My cancer-friend (now that is a weird thing to say or write, BUT, it's more and more true these days), Jennifer, appears to be right about where I am today. Here is a link to her blog: Tamoxifen Diaries
   

She picked up on my post about the risks of consuming alcohol, for first onset of breast cancer people like us, AND for future recurrence, and blogged about it. We are there together....

• Challenged by the alcohol consumption around us, mostly wine; and how casual it all is, nearly all the time, and how to avoid it "most" of the time.
• Eating better; more greens, less meat, less bread, vegies, legumes -- trying to grow more of it and choose only organic and non-GMO.
• Challenged to drop some weight as stats show heavier women are more at risk (yes, it's the fat thing again coming back to haunt me over and over). But from what I can tell, she was pretty slim and trim until this cancer visited her and played a roll on her body and metabolism.
• Taking the "five-year-pills" and the side effects it can bring.
• Looking different; the hair, or lack there-of, or increase in facial hair. Leaving it natural finally, or not!The lopsided boobs; but heck -- they are there, and all mine.  :-)
• Staying positive and not thinking about "it"; will it get me again later, maybe ten years down the road, maybe tomorrow, hopefully NEVER!

All those challenges we face as we are now "cancer survivors" or "in remission". I like "survivor" better myself. :-)

Then there is the challenge to continue with the blog; or how to continue with the blog. I mean, in reality, life is pretty darn good and those are the things to talk about and focus on now. But do I switch and change blog my format. Do I continue here so all my followers, who have been so interested, and complimentary, and told me how much help I have been to them; so they see that I am doing well and there is life after cancer.

Jennifer and I are definitely on a similar path right now. It is such a challenge at times. Lucky for me to have my first two grandchildren enter my life at the end of the year of my cancer treatment. That definitely has given me a wonderful distraction, especially since I get to spend a day a week with each of them. I can't believe how joyful it is to be with them and see their smiling faces. I had no idea being a Grammie (aka GaGa) could be so absolutely wonderful - the icing on the cake, if there is such a thing. Motherhood and being a wife is wonderful too. Having a career is very rewarding. But BEING A GRAMMIE!!! Oh my!!!

Cutting wine from my diet, which has actually helped me to lose weight has not been too hard. I've not been overly rigid on myself, but save it for special occasions. Some weeks I have a glass or more a couple of times a week, other times I have none. I basically do not drink at home at all! PERIOD!! I will though if we have company, go out to a special event, a wedding, dinner out with friends. But I'm finding I consume much less. I've decided the Farmer's Market we attend with friends is just too frequent, as it will then be a weekly happening. And that has not been hard. I am the DD for sure that night, and that helps out. I do to eat better, eat more greens, less bread, but really -- the wine is the one major change I am good at most of the time. :-)

But WE are here, and trying to be better at what we do, take our daily pill, and enjoy the loved ones in our lives. 

So here are my loved ones:

Alura and Nico, who just turned one in August. 

With 5-6 adorable teeth, he's babbling and walking and getting into everything.

Sarah and Gaige. Gaige is now 10.5 months.
He has two teeth, babbling as well, crawling like mad, and also into everything.

And Grandpa Mark, pictured here with Gaige at the Farmer's Market.

AS YOU CAN SEE -- LIFE IS VERY GOOD

Debbie... aka the cancer warrior ... AND SURVIVOR!!!

LIVESTRONG: 

• I AM STRONG • I AM HEALTHY • I AM LOVED •

Hair Growth Progress

I am documenting my hair growth here and will bring this post forward each time I update it.

9/9/12: It's been nearly 1 year since I finished all treatment now, except for the "five-year pill" and 16 months since my last chemo. I've had three hair cuts so far over the last four months, but each has been just to barely trim off the dead dry ends and shape it a bit. You cant see it here, but I continue to have quite a bit of new growth. There is a nice crop of brand new hair which is all about 3/4" long. The extra curl that came in post-chemo has disappeared and I'm back to the natural wave. But my hair is ultra soft and fine, which I think is still a change from what was once normal. And I think my eye brows are finally back to what was normal pre-cancer treatment. So things continue to improve, I'm feeling good, and look forward to my one year anniversary and getting past my follow-up oncology appt, along with blood work and bone density scan.

5/1/12: First haircut in over a year.
 
4/8/12: 11 months of growth since last chemo of 5/17/11.

The curls are softening up a bit. My hair seems thinner than before and the tips are brittle. it is probably time to get it trimmed and get rid of the ends from chemo, especially now that there is a bit of length.

This is Easter Sunday. I am holding Gaige (Sarah's 5.5 mo. son), and Alura is with 8 mo. old Nico. Such a joy.

12/17/11: 7 months of growth since last chemo of 5/17/11.

I thought for sure I would have more hair by now. At least it is almost to the point where I can get it trimmed and cleaned up a bit. I mean, it is barely 2" long. But look at that sweet 7 month old Gaige, my grandson. So much to celebrate now!

Grammie and Gaige at our annual holiday celebration.

11/13/11: Nearly 6 months of growth since last chemo of 5/17/11.

Wow! Has it really been two months since I posted an update about my hair growth? Well, I suppose that may be because it grows so slow that there really isn't much to share about it very often. I will say that I definitely have more curl than before. The hair all over my head ranges a whopping 1.5 to 2 inches long. You can see from these recent two pics with my grandbabies, that it is more fluffy and curly on the top and sides now. I definitely need to look in the mirror before going out or it may look all messy -- which is a good problem to have -- one I haven't experienced in about nine months. My head does still get pretty cold with the cool Fall evenings we've been having, so a good knit cap is still a must. But that is fine by me. Below are some close ups.

Gaige, about 9 days young

Nico, about 2.5 months; preparing for Halloween

back

side

I definitely expected more grey, so am pleasantly surprised with the amount of color. Yippee for the little things.  :-)

9/10/11:

While the hair on my head seems to be in a very slow growth patter, my legs are hairier than ever. I've forgotten about shaving them regularly since I am so out of the habit. Yesterday I looked down at them while wearing a pair of capri pants, and oh man... that hair is growing like a weed. Well the things we "liked" about chemo must quickly slip away, just like the things we did not like about chemo.

On the topic of head hair regrowth, I've studied up a bit and it appears that my hair will return at a much slower rate than normal hair growth. My hair stylist and dear friend, Susan, tells me hair normally grows about 1/2 inch per month. Considering the first month after chemo nothing much happened. And then looking at this picture below on 8/27/11, you can see that this is definitely not the 1-3 inches of hair expected. After talking to some other chemo patients, apparently it is a good 6 to even 18 months before hair comes back in looking good and normal. I have such empathy for the woman in radiation the other day who asked how long my hair had been growing. She was wearing a scarf and seemed to have such hope in waiting for my answer. Her chemo just ended 3 weeks ago so she wasn't quite as excited when I informed her it had been nearly four months since my last chemo. 

Give it time dear one. It all takes time.

But look at this. Pretty impressive in my mind. :-) (Yes, there is another ear there, just hidden)

4 months post chemo.

8/27/11:
Hair growth 3.5 months post last chemo treatment.

8/27/11 3.5 months post-chemo

 

8/17/11 3 months post-chemo

 
7/31/11:
Hair growth 2.5 months post last chemo treatment.

Mark calls this his summer look. I call this my chemo look.

I actually have enough eye lashes and brows to where I feel I have the same color around my eyes as pre-chemo. And look how my head of hair is growing in. I'm surprised there is as much brown in there as there is. Talk about a crazy way to transition from coloring your hair to your natural color. 

7/13/11:

I am nearly 2 months past my last chemo infusion, which was on 5/17/11. And there is enough fuzz on my head for me to barely grab it between two fingers. The hair on the back, near the nape of my neck, is a tad longer than on the top. Most of it appears to be grey, but there is a hint of brown sprinkled in too.

All through chemo I had a few eyebrows left near the center of my brow, and enough eyelashes to barely grab them between two fingers. Now that I have new hair growth, those few straggling hairs have disappeared and made room for the bit of fuzz in both places.

I wish I could say that the annoying facial hair was not coming back; but heck, I'll take what I get at this point.

6/23/11:

It is about five weeks post my last ACT Chemotherapy infusion and I'm starting to feel just the tiniest bit of fuzz on my head. You can't really see anything, but it appears to be coming back in.

Hugs,

Debbie... aka the cancer warrior ... AND SURVIVOR!!!

LIVESTRONG: 

I AM STRONG. I AM LOVED. I AM HEALTHY. WE WILL WIN!

Stand Up To Cancer

Mark and I are watching the special Standup2cancer program for fundraising to find a cure for cancer. Lord knows I could only hope for such a miracle in my lifetime. 

I am presently one of the blessed. It is almost one year since my last treatment of radiation, and thankfully it feels like it has been even longer than that. I have appointmnts coming up in October for followup oncology appointment, blood work, and  bone density scan. All bring back that reminder of the reality of it all. Bring back the fear that maybe they will find "something". Bring back reality.

But during this telethon, there were several very touching stories; some of children, and young adults, with metastasis or high staged cancers. Very sad to watch, but yet uplifting at their strength and fight. And the fight against cancer, to find a cure and erraticate cancer... Forever for all!

Life is short. We will all die of something, some day. So live life to the fullest. Hug your children. Tell them you love them everyday. And if you are blessed with grandchildren, make them a very special part of your lives. Most of all, eat well, exercise, get lots of green leafy vegetables in your diet, keep alcohol to a minimum, keep your stress level low, and enjoy life to the fullest.

LIFE IS GOOD

Debbie... aka the cancer warrior ... AND SURVIVOR!!!

LIVESTRONG: 

• I AM STRONG • I AM HEALTHY • I AM LOVED •