Survivorship 101, Part 1

I thought it was time to add a survivor picture to the header - this was taken a couple of nights ago. The top picture was taken the day after my first chemo, we had a scarf and hat testing luncheon. I think I like having hair again.  I'm so thankful that they live close, and were, and are, there for me.  Thank you Juliana, Teresa, Katrina and Emily (granddaughter).

Survivorship 101 has been one of the hardest things I've done. Harder than the treatments for sure. During treatment you are all tied up with your doctor appointments, tests, treatments, dealing with the immediate side effects of what is going on today. It doesn't leave you a lot of time for anything else, just make it throught today, then when it's over, it will be over. NOT TRUE! It's never over, just different. I think that some women like to try to believe it's over, and maybe they are successful at resuming their lives as they were before, but not me.

I just re-read my plans for survivorship from the May posting. Sounded easy, but not so much.

The good things-

• Cancer Free!!!!!
• Cancer Free!!!!!!!!
• Cancer Free!!!!!!!!!!
• Awesome God
• Super Family
• Wonderful support system of friends & other cancer survivors
• Helpful, caring, listening doctors
• It could be worse

The bad things -

• If you don't have something good to say don't say anything at all.

Coming soon to this blog, my thoughts on Pinktober, support groups, managing side effects and more.  My plan (early New Year's resolution) is to blog more often!

Thanks and God Bless you all,
Linda

I'm Gonna Love you Through It - Martina McBride

My daughter Juliana said she had heard a song on the radio the other day about baggy shirts... and she thought it was about breast cancer.  I found the song, it's a beautiful new song by Martina McBride.  Here's the link to her official video.  It's beautiful!

Support Groups - Guest Blog by David Haas

Recently I was asked if I allowed guest bloggers on my blog.  I hadn't really thought much about it, but it did motivate me to start sharing again.  I recently started volunteering for a couple of hours on Tuesdays at the WVCI visiting physcians office and infusion room in Florence.  I have to say it's been wonderful so far, I love seeing every one again, and giving back - I think that it is helping me move toward my new normal (well maybe).  I'm also getting Reach to Recovery training from the American Cancer society, I'll then be able to volunteer with the ACS. 

My guest blogger is David Haas - he contacted me after reading my blog.  He felt that his information would fit right in with mine, and I quite agree - The topic is on support groups - before sharing his information I'd like to talk a little about support groups.  I'm a member of our local cancer support group for women - The Sisterhood - I started attending about two weeks after my diagnosis, they've helped me in so many ways, I can't even begin to tell you, the value of a group that allows you to voice your fears, joys, questions, anger.. is invaluable.  There are alot of things that you might not want to talk about with your family, and this is the safe place where you can share these things, and not only can you share your issues, they are an amazing resource on how to deal with them, and are also great sounding post to just let you get some things off of your chest.  Yesterday, while I was volunteering at the cancer center the subject of support groups came up, a lovely lady was quite disturbed that there was no support group in her community - the infusion room becomes a support group at times, but she would like more.  David shares information on this subject as well as some links to online groups that you might want to check out.  Also, you can check out his blog at - http://haasblaag.blogspot.com.  I hope you enjoy this as much as I did......

They're Waiting to Welcome You
By: David Haas

A room full of concerned & compassionate loved ones surrounds you, yet you've never felt more alone. You look around at the faces of well-intentioned family and friends, yet can't find a single person who can genuinely relate to what you're going through. How can you be expected to express your appreciation to these people, what you really want to do is be left completely alone because none of these people have the experience to possibly understand.

Our personal stories, our coping strategies and our support systems may vary somewhat, but the truth is, you are never alone. Your experience is not unique and you don't have to figure this out all on your own. Sometimes the very people you need the most are the ones that you have never met, as so many are discovering through the gift of cancer survivor networks and supportive Internet programs. It's often in our anonymity that we are able to discover our true strengths and admit our deepest fears, along with making connections that we'll treasure a lifetime.

It's undeniable that speaking with and/or writing about your feelings with people who have been where you are can reduce stress, improve feelings of well-being and confidence, lessen loneliness, and help with coping skills, among other benefits. But now cancer support groups are being looked at as a possible direct link to improving the health of it's members. A recent small-scale study at Stanford actually found significant health benefits associated with involvement with these type groups. Larger-scale studies of this type are ongoing.

While some groups are dedicated to one particular type of cancer, patients vs. survivors, etc., many sites, such as Cancer Support Community, offer a comprehensive support site where you can find everything covered, from mesothelioma support groups, to help selecting a doctor to caregiver support and much, much more. This particular site even has a new smartphone app so that you can access it anytime, anywhere. I found the quote at the top of it's homepage particularly sums up the point:

"Having a place to share experiences and questions with others, as well as learn how to cope, all from the comfort of their home, will greatly benefit cancer patients.” - Ted Kennedy, Jr.

Gone are the days when cancer is something anyone has to face alone. So the next time you're fretting over cancer care costs or you want to hear experience from real patients who've undergone alternative therapies or you just feel inspired to share your own story with others who can find inspiration in it, remember you're only one click away from 1,000's that may even know you better than you know yourself.

Thank you David!!

Hair!!!!! Last Herceptin!!!!! Survivorship!!!!!

Tomorrow is my last Herceptin, hopefully I'll have the port removed by the end of the month, and my hair is growing.  It's been one heck of a year.  A year of trials and a year filled with more blessings than I could ever imagine. 

I was asked recently "HOW DID/DO YOU GO FROM BEING A PATIENT TO BEING A SURVIVOR?"  Here is my answer - "Wow this is a tough one - I just had my one year mammogram, only one more Herceptin to go, survived mastectomy, chemo and radiation, on my third type of AI (the doctor keeps changing them hoping it will help with the pain), I'm still very fatigued and lots of pain (from the AI's? residual side effects from chemo and radiation?). I'm waiting to feel like a survivor, and wish it would happen soon, instead, I just keep waiting for the other shoe to drop. So at this point I still feel like a patient. I'd sure appreciate any tips on how to move on to feeling like a survivor. I like the idea of the the survivorship plan and the retreats."
Well, I'm happy to say, that in the last couple of weeks, I've gone from feeling like a patient (one who wrote that pathetic answer above), to feeling like a survivor.  So what helped me go from patient > survivor?  I'm not sure, but these may have contributed to the change -

• 1 year appointment with my surgeon
• a good mammogram report
• last Herceptin coming up w/port removal
• proactively dealing with the lingering side effects of treatment (find out what can be taken care of and what I will have to learn to live with)
• started yoga, swimming or walking almost every day
• conscious effort to stop thinking the negative thinking
• pray more for the grace to trust in the Lord

We choose how we handle the trials that come our way - my FNP recommended a book - "Managing your Pain Before it Manages You" - I think that can apply to a lot of things in our life besides pain - we don't choose a lot of the things that happen in our lives, but we can manage the way we deal with them!  So - now I can truly say, though I still am a patient, I'm also a SURVIVOR!!!!

And on another subject - I'm reading this wonderful book, "The Emperor of All Maladies: A Biography of Cancer", recommended to me by an oncology nurse.  It's kind of a big book, but worth the time, it's a fascinating history of cancer and cancer treatments, it reads like a good murder mystery, I can't wait to see how it ends!! 

God Bless you,
Linda

William Li: Can we eat to starve cancer? | Video on TED.com

I really need to get back to blogging, but meanwhile, I love to share these videos that I run across.

William Li: Can we eat to starve cancer? Video on TED.com

ILLUSION - A Short Film

I came across this video today, it speaks volumes to the emotions that go along with breast cancer.  It's beautiful.

Linda

2011 - The Year of the New Normal

The Girls - Christmas at Teresa's

I can't believe that 2010 is over, it flew past, I guess time flies when you're having fun? 

I think that it may be time to rename the blog.  I've completed Breast Cancer 101 and passed with flying colors.  I'm considered cured and taking precautionary measures to make sure that there are no nasty little cancer cells dwelling out there in my body somewhere just waiting for their chance to start a new colony, the Herceptin and Armidex are my vigilant watchdogs.  Thank you God for modern medicine - these two therapies haven't been used for adjuvant therapy for that long. 

Now it's time to find that new normal I hear so much about.  My old normal will never be there again, so I need to stop waiting for it to return and move on to my "new normal".  Easier said than done.  I get so excited when I have a little window of the old normal, I think "Tomorrow I will be able to get out there, get a job, cook dinner, do the laundry, visit friends, clean the house....", and then 15 minutes later I'm taking a nap.  The doctors and nurses, and my family, are awesome, they tell me I need to let my body heal, it will still take a while, I've been through a lot, lower my expectations to be more in line with reality, again easier said than done.  I guess I've always been kind of an overachiever, expecting more of myself than others do, it's hard to break that pattern in my brain. 

New Normal Rules -  (not necessarily in order of importance)

• Trust  that God is control and I need to let Him show me the way.
• Rest when I'm tired
• I'm not being lazy - I'm healing
• Don't cry about it, there is nothing you can do
• Recognize my limits
• One step at a time - sometimes that means one step forward and two steps back, but other times it's two steps forward and one step back
• Realize that I really am getting better, remind myself how I felt after chemo and again after radiation, I actually have come a long way
• Look to the future - realize my new possibilities, they may be totally different than what I've done in the past
• Enjoy each day
• Love my family
• See the beauty that God has laid out there for us
• Take the low times in stride, recognize it as part of the healing process
• Live each day with love and thankfulness
• Enjoy the rain 
• Dance and smile



Ambrose



Apples to Apples

On a more general note - Our Christmas was very blessed.  We got to spend wonderful time with all of our children and their families, and we were blessed with a new grandson on Christmas Eve.

Soul of Christ, sanctify me.  Body of Christ, save me

Blood of Christ, inebriate me.  Water from Christ's side, wash me

Passion of Christ, strengthen me.  O good Jesus, hear me

Within Thy wounds hide me,  Suffer me not to be separated from Thee

From the malicious enemy defend me.  In the hour of my death call me

And bid me come unto Thee.  That I may praise Thee with Thy saints and with Thy angels

Forever and ever

Amen

God Bless you all and thanks for keeping me in your prayers,

Linda