SUPPORT GROUP?

HI FRIENDS AND FAMILY, I'm thankful for a good week since my chemo last Thursday.  As I've said that was the first of 9 smaller weekly doses and SO FAR, the first one at least was very manageable.  I was able to go and do with minimal symptoms.  The aches seemed to kick in bad late at night, but not bad every  night thank God.  I do realize the subsequent doses will be accumulative, but I'm hoping for the best.

I'VE HAD A DESIRE to try out a monthly breast cancer support group but because of surgeries, chemo, etc. getting in the way, I just yesterday was able to make a meeting up in Ocala.  I found the info. online through American Cancer Society webpage.  There's another one listed in the Villages, but they meet on Thursdays which is my chemo day.  The one in Ocala met in a Methodist church and the small group of ladies were all so sweet and welcoming; however, I was the youngest there among mostly older retired ladies which I realize is the largest age group to get breast cancer.  They had a guest speaker there, a plastic surgeon who discussed briefly the different options for breast reconstruction which I'm already fully engaged in.  It was informative though and I learned I still had some options.

I'VE HAD A NAGGING DESIRE/NEED/THOUGHT as to whether I should start my own breast cancer support group in our area.  It doesn't even have to be limited to breast cancer necessarily.  I know of several women in our small community who have been recently diagnosed or have battled in the last couple of years with cancer.  I'm trying to decide the true need here and whether its just me.  I'll need to pray about this and ask the Lord for guidance, but I'm just throwing this out there to my readers especially those who fall in this category.  Would this be something of value to you that could be a lifeline and help with the isolation that cancer can bring?  I know most of us are blessed with a wonderful support system of family, church and friends, but its a shame we can't all come together as cancer patients on a regular basis (say monthly) and lift each other up or share information.  I remember in the early weeks especially, I would have jumped at this.

I'd value any feedback on this and if this doesn't apply to you, perhaps you could pass it on to your friend or loved one who could give their opinion.      

"HITTIN THE WALL"

KENNY AND I ENJOYED SOME MUCH NEEDED TIME AWAY this Monday and Tuesday night.  We used some Hilton points he had accumulated and stayed in Orlando.  Tuesday we even took the big step of splurging on Epcot not knowing how I'd do with all the walking.  We took it slow and enjoyed most of the park with the finale of laser lights and fireworks at closing that only Disney can do.  SO good to get our minds on other things.

I HAVE TO GIVE A SHOUT OUT to the encouraging and supportive nature of cancer survivors everywhere - especially fellow breast cancer survivors.  As I've said early on, it is a close sorority that you never signed up for.  I decided to wear to Epcot my pink "Fight Like A Girl - Breast Cancer Survivor" t-shirt and hat Brittni my niece bought me.  I thought since I'd get my fair share of stares all day from the scarf draped head, I'd go ahead and give people the answer they were curious about through letting them read my t-shirt on their own as we all stood in those long circling lines waiting to get on a ride, everyone staring at everyone.  Little did I know that I would have the opportunity to meet and speak with several fellow survivors over the day at Epcot.  The first dear lady in her 60's we met was 2 yrs. post mastectomy/reconstruction, no chemo.  Her and her husband stood right behind us in the 1-hr. (yes, I said 1-hr.!) line to get on "Soarin" (which WAS a great simulated hang-gliding ride, BTW).  We had a long time to talk to her and her husband about her experience.  It's amazing how even with a stranger, you can pick up and immediately begin talking the cancer-ese language with someone who totally "gets it" and doesn't need translation.  She was doing well now and encouraged me that the "permanents" are so much better/softer than the tissue expanders I like to call "rocks".  Good to know!

WE SHARED A CROWDED TABLE at lunch with a sweet Christian black woman and her friend who we quickly bonded with in the Lord.  She noticed my shirt and told us of her daughter in her 20's who was post melanoma cancer and now doing her sociology dissertation on cancer survivors.  We exchanged cards at the end and wished blessings on each family.  Then later while drying my hands in the restroom, a sweet woman about my age, tapped me on the shoulder briefly and said "I was just where you were 2 yrs. ago, and I want you to know there's light at the end of the tunnel, hang in there!". Such precious words, and great hair she had!  So neat to meet such encouraging people, ones I wouldn't have met if I'd have scratched the t-shirt and hid behind a hot, itchy wig all day, which I DID consider.

UNFORTUNATELY, our fun did have to end and I had chemo yesterday, the smaller dose this time.  I'll go again every week for the next 8-9 weeks, but so far today the symptoms are minimal, PTL!  Let's hope that continues.  In reference to my last blog about my mind battle last week, I DID speak to my oncologist about that.  He conferred that goofed up hormone levels could definitely play into the severity.  He also shared with me that he was not surprised to hear me tell him about the depression.  He sees it in a lot of his patients around this point in their treatment...he called it "hitting the wall" and compared it to the 17th mile for runners in a marathon.  You're tired, tired of it, gone through much already and yet aren't close to the end.  He said, like runners as they get closer to the light at the end will get that boost in their mental spirits as will cancer patients.  Good to know I wasn't just mentally weaker than I thought and we did talk about how to take the medications I needed when I needed them.

WHILE CANCER SURVIVORS are of great support, I continue to shout out thanks to ALL my loving supporters including Diane Green and her husband Roger, members of my church, who felt led to shave their heads to support me.  WOW!  Certainly not expected...but how sweet.

BATTLE OF THE MIND!

AT THE BOTTOM OF MY BLOG TODAY you'll find an incerpt that I've pasted from another breast cancer survivor, Brenda Coffee, whose blog I follow.  It's on the healing power of music.  Her subject was very timely for me and so I thought I'd pass it on for someone else.  Here's why...

I HAVE RELUCTANTLY decided to share with you that this past week I struggled, sometimes deeply, with depression at times.  While I did indeed had a good and MUCH better physical week, it was replaced with a cloud of nagging unsettled sadness, unmovitation, boredom, despair, and even panic at times -  and FOR NO GOOD REASON.  "Well, you have cancer"...you might say, "isn't that a good enough reason?"  Perhaps so, and I do want to find the balance between giving myself a break and not feeling guilty for the occasional blues AND YET not falling prey to the deep hole of the mind that one can easily slip into if not on guard.  It was so troubling this week that part of me would have rather been physically sick than struggle with my mind.  I believe if anyone has "been there", you'll understand what I'm saying.

MY RATIONALE reminded me that I am SO BLESSED with SO MUCH to be thankful for AND relatively small issues compared to so many, yet depression is not usually rational.  The worst part is that my family has to take care of me enough when I'm physically down and can't help it...it PAINS me to add unnecessary baggage for them to have to live with or feel compelled to "fix".  Besides that, I'm a woman of faith and while I do believe in using outside medical help on occasion in this area, I DO want to exercise the tools God gives me to overcome.  One of those being the area of music and the article I'm including below.  One of the reasons I SO enjoy praise and worship time at church as well as the love and fellowship of my friends there...it is good for the soul and mind.  I will try to actively work on that more at home this week and turn off the depressing news or deafening quiet of my mind.  By faith, I WILL get through this "symptom" as well and will also talk to my oncologist as to the possible roll of hormones going haywire due to chemo.

I APPRECIATE ALL THE PRAYERS that have already been raised for me and was somewhat reluctant to share so honestly in this blog.  My intent is not for your sympathy or to pass my burden on to so many of my dear friends and family who are already praying and reaching out.  But rather, something tells me that there are many more around us everyday who are fighting the same battle of the mind, even good strong believers, who need some light shined on them - I believe depression thrives and grows like a cancer in darkness and solitude, at least it does for me.  SO I PROCLAIM THIS FROM THE ROOFTOP OF MY MIND!...
For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.  2 Corinthians 4:5-7

Here's Brenda's blog incerpt...hope you find it helpful!

The other night I watched a rerun of Diane Sawyer’s interview with former US Congresswoman, Gabby Giffords, and her astronaut husband, Mark Kelley. The interview was the first time the public had seen Giffords since she’d been shot in the head at point blank range. Watching her radiant easy smile, I realized her healing journey has been nothing short of miraculous. Near death when she arrived at the hospital, Gabby Giffords suffered a major brain injury that necessitated temporary removal of a piece of her skull. The injury also forced her to learn to talk, walk, read and reason all over again, and surprisingly, the tool her therapists found to be most helpful was music. According to scientists, nothing activates the brain like music, especially in the case of severe brain injuries like Gabby Giffords. Music has a unique multi-dimensional power to change the way our brain strings words together; it helps us learn to walk again, and it increases the dopamine levels that produce a positive affect on our sense of well-being. Sometime last Fall, I remember singing along to Cyndi Lauper’s Girls Just Want to Have Fun on my car radio. At first my voice was tentative and soft, but it wasn’t long before I was singing with everything I had, and in that moment, I forgot James died. I forgot that most every area of my life was drenched in grief and betrayal, and in that moment, I wasn’t a widow or a breast cancer survivor, I was my usual happy upbeat self. Amazed at my happy outburst, I remember thinking that on some level, my healing had begun. For many of us, healing is an ongoing process. Whether it’s physical or emotional, cancer, betrayal or grief, the torn and fractured pieces of our mind and body continue to knit themselves together, again. We gain strength and draw comfort from the prayers of those around us, the compassion of our medical team and from the examples of those who’ve gone before us like Gabby Giffords and Mark Kelley. Gabby and Mark underscore what many of us already know: When the life we planned is not the life we’re living, we must dig deep and summon the courage and determination to map out a new life. In Diane Sawyer’s interview, Gabby Giffords and her therapists sang Girls Just Want to Have Fun, and in that moment, Gabby was radiant and whole. It made me think back to that day in my car when I sang the same song with joy and abandonment;how the healing power of that happy song lifted me out of my grief.  Music makes new pathways in the areas of the brain that control memory, emotion, even movement. Our body naturally wants to align itself with the rhythms of our environment. What rhythms are part of your environment? Are they the stories on the news about murders and robberies or, like Gabby Giffords, do you surround yourself with music and examples of courage and survivorship? If you can’t remember the last time you sang at the top of your voice then it’s been too long, my friends. Like Gabby Giffords, we may be beaten up around the edges, but we’re not beaten.  Sing, dear ones, and heal well!

TAXOTERE IS THE DEVIL!

COMING BACK FROM A HARD WEEK AND A HALF.  A week ago this past Thursday was my half-way point with chemo.  I was given the chemo drug Taxotere which my oncologist explained had recently proven slightly more effective than the Taxol we had planned to take.  Side effects would be about the same.  He gave me the option though of continuing to take it in a once-every three-week dose like I've been taking the A/C, OR break it into smaller doses which would require me coming in for infusions once a week for the three weeks for 12 weeks.  I opted to take the full three-week dose to keep from coming so often, plus I'd heard all along that A/C was "the beast" and that I should find Taxotere or Taxol a little easier.  BOTTOM LINE - THIS STUFF KNOCKED ME ON MY BUTT!  By mid-week I was so weak and sick (much of which I can't even remember) I was back down to Tampa on Wed., Thurs. and Friday getting IV fluids again, looking like death warmed over.  My oncologist felt so bad and agreed the Taxotere was too much for me.  At my next chemo on 3/22, I'll take the three smaller doses weekly instead and will revert back to Taxol.  NOW I JUST HAVE TO RECOVER FROM THIS FIRST HEAVY DOSE and get this all out of my system.

I'VE NEVER BEEN SO WEAK thus far in my treatments as the last few days.  Body aches all over, bone tired weak feeling, taste buds all goofed up, among other things.  Sometimes sitting in a warm bathtub was my best friend.  Today's the first day I've felt like sitting at the computer and catching up.  "STRONGER BACK, STRONGER BACK" has been my central prayer over this past week and I know He came through for me.  Feeling stronger today and praying it continues over this week.

TALKING WITH A DEAR AND BRAVE FRIEND going through her own battle with cancer, we agreed that the constant and continual barrage of one-symptom-after-another is what can get you down mentally.  If its not one thing, its another, kind of thing.  She's an inspiration to me and I'd be blessed to have half the guts she does!  Thanks once again this week to my friends and loved ones for the prayers, emails, cards and food...you are all a blessing!

ONE FUNNY MOMENT OF THE WEEK...as my sweet nurse Jean was hooking me up to my IV fluids on Wednesday, I was puking in my little pink basin, so sick and looking pretty bad I admit.  The chatty older gentleman patient next to us getting his infusion began to tell Kenny how happy he was with the nursing/living facility his wife had found for him and offered to pass on the info to Kenny.  Kenny cheerfully thanked him and Jean ended up moving me to a room where I could lay down, but Kenny and I laughed later about the little man trying to send me away to a nursing home already.  You gotta laugh!