Thursday, April 25, 2013

The MoonWalk fundraiser NYC July 2013

Walk the Walk is bringing an Overnight Marathon, the Moonwalk to New York City. Kind of a nutty and fun idea.  Power Walkers (men and women) will be walking a marathon (26.2 miles) wearing decorated bras to "inspire and encourage others to get fit, have fun and raise money for breast cancer charities in New York."

Empire BlueCross BlueShield is the sponsor of the event which is expected to have about 8,000 participants.  In addition to the full marathon, there will be a half marathon to encourage participants who can't do the whole thing.

"the MoonWalk hopes to raise two million dollars in one night, most of which will be granted to Memorial Sloan-Kettering Cancer Center, to help support their Breast Examination Center in Harlem (BECH), one of the first free screening facilities for breast cancer in the country where 80% of the patients are uninsured by guaranteed support and guidance."

"We are all so thrilled to br bringing the MoonWalk to New York City.  This is the city where it al began!  In 1996, 13 of us proudly Power Walked the New York City Marathon in our Bras, and it is just quite amazing to see how far it has come and how much we have achieved,' says Nina Barough, Founder and chief Executive of Walk the Walk.

Applications and entries are available at . Participants are encouraged to raise at least $150.00.  you can also get additional information at or follow on twitter at @WalktheWalk

When you register, they send you a nifty training kit.  It has a fitbit zip activity monitor (aka pedometer), an insulated water bottle belt holster  and a VERY nice fanny pack...with lots of zippers and stuff. I got the package as they asked me to promote it....I kept on saying  that I couldn't walk two blocks because of my feet (maybe I could do it as a zombie?????) but that it sounded like a lot of fun and I would put it out there for anyone in the vicinity or who is able.

In Europe, this event has raised a lot of funds with events in London,England;  Edinburgh, Scotland; Iceland; SunWalk, London.  In total, Walk the Walk Worldwide has raised over $126 million for breast cancer causes.

They say that they have funded much for advanced stage or MBC I don't know....but it still seems fun and worthwhile.

Monday, April 15, 2013

ACS Wig Bank

 As a result of being confused with a fortune teller a couple of weeks ago and the suggestion of one of the people who commented on my blog (Thanks Karen!), I decided to bite the bullet and check out the American Cancer Society's wig bank.  This was a little imperative because last week I gave a talk to other advanced/metastatic breast cancer patients who had been recently diagnosed.  In addition, I was working at the International Quilt Festival in Cincinnati.

I called the American Cancer Society's 800 number, and I was referred to "Styles Unlimited" in Sidney, Ohio, which is about a half an hour from me.   I was surprised at the number of wigs they had on hand...some were donated, either after use or when they didn't work out for the person who ordered them and some are donated directly to ACS by the manufacturer.  Darla and Patty and I...and a couple of their customers who came in after we started the process had a fun time trying them on and trying to pick what would look the best.

I was a little surprised because hair which was my natural color looked a little too dark...Instead, we settled on this one which has some "frosted" areas in front, but also had reddish brown over all...sort of similar to my natural color but looking a tad lighter.

It hasn't fallen fits pretty well, although you do have to wiggle it around to find the sweet spot so it won't give me a head ache.  I still can't find my wigs from before (from three years ago and the original one which was purchased in 1994).....So I was very pleased to have been helped out with this one.  This was a godsend given the status of employment in this household of late.

You can check out resources offered to Cancer patients on their website here.  It is in the "find support and resources in your area."

Monday, April 8, 2013


Not too long ago, I read a post someone had written taking umbrage with the viewpoint that sometimes the caregiver of an advanced stage or metastatic cancer patient has a difficult time.  I agree that it is the patient who is staring death in the face and has to deal with the personal changes and personal hell of getting treatment.

But, I also think it is difficult for those who love us and are watching us go through this, and wanting to help...but not knowing quite what to do.  Partly, I think it is because there isn't much of a support system for the caregiver.  The attention is focused on the patient...and rightly so, but that doesn't make it easier for the caregiver.

Don't get me wrong...some spouses, significant others, etc. can be....well....real douche bags and idiots.  They take their fear out in the form of anger at the patient....or meet it all with denial, expecting the partner to continue to do everything as they have before diagnosis and treatment.

My own experience has been a husband who tries to be supportive but is scared spit-less ...who sometimes cries because he knows that in all likelihood  I'm not going to pull out of this one and time is limited.  Not to mention the other stuff he has to deal are we going to pay for this....a kid in college....blah blah blah.  I have taken the viewpoint that there's a heck of a lot I can't do anything while I am concerned about those things....I'm not going to spend any time worrying about it.  Maybe it is silly...but why bother? I can't hire him.  I can't do anything about any of that....but I can try to straighten out my own messes, sell stuff on ebay, etc.

Sometimes I overhear things in the waiting room in the cancer center.  Some of it is really touching.  A couple of weeks ago, a woman who had gotten some treatment at the same time I had the week before was there with her husband to get her blood work done.  While they were sitting there, the husband was trying to figure out where he was going to take his wife....he was talking to her about Lourdes, or to Fatima, Portugal to get help for her....She was largely ignoring him.  It was obvious to me that he felt helpless and didn't know what to do, so he seized on what he could.....asking for help from God at the two shrines.  She was rather irritated with him...and was speaking rather sharply to him.

I felt sad for both of them.  We are in uncertain is hard to know what to do...and whatever we can try seems to be worth it.  I often get notes from friends or acquaintances with a new miracle juice, diet, or cure.  I try to look at all of this as what it is...people who want to help...people who love me and want to see me well.  And that's a good thing....

Friday, April 5, 2013

Down the Badger Hole I don't have any images of a rabbit hole.  Yesterday, I experienced a blood counts were too low to get my second dose of Halaven in the second cycle.  I was stunned.  This had never happened before.

All sorts of odd feelings came rushing in....Will the cancer grow since I won't get any chemo until my oncologist sees me on April 17 and figures out a reduced dosage?  What does this mean for my overall survival?  Will a reduced dosage work? After all, the reduced dosage of Xeloda was only marginally better for my body and wasn't enough to control the cancer.

On top of it all, I obtained a copy of my last PET scan.....and the results were more dire than my oncologist had led me to believe.  All of this is downright scary.  However, I am trying to take a deep breath.  Since my first blood test indicated that the Halaven was working better than the oncologist anticipated, perhaps a reduced dosage will do as well.  Perhaps the fact that I got one cycle and one dose in will mean that I will have a residual effect while I am waiting to get the reduced dosage.

Other questions are in my head....can someone with extensive bone mets like I have manage to get to a level of stability or even better yet No Evidence of Disease again? Or am I fooling myself.  And in the mean time, what can I do to improve my health so that I am doing everything I can to make it work?  Hopefully, I will be able to start walking again...although I am very slow and the neuropathy (from previous drugs as well as Halaven) make my walking pretty's like I have dropped feet.

I do know that I cannot be mired in the "what ifs."  However, I do recognize that I am having a period where it seems daunting indeed....That's one of the tough things about this disease.  It is in some ways unpredictable....but it does have one predictable can't be cured.  I will once again work to wrap my head around this....and not let the Cancer steal away my good days.....

Wednesday, April 3, 2013

Halaven and Hair...or Halavan and hair....or no hair at all

Wow.  What a surprise.  I suppose I shouldn't have been surprised.....but just 15 days after my first Halaven (some places it is spelled Halavan....eribulin) I hopped into the shower....put shampoo on my hand and started massaging my scalp....only to have a hand full of hair.  I was sort of shocked.

Wait a minute, you're probably thinking, she's shocked?  Well, yes.  For one thing, only 42% of patients using this drug lose their hair...and I had hoped that I was one of the 58% to keep it.  The other thing is that in the past on the other drugs which caused me to lose my hair (CAF, Taxol, Abraxane) it took longer.  

Don't get me wrong....I really don't mind being a hairless wonder...being bald has a lot of advantages....and I'm getting used to it by now.  But the process is always messy.  When we say that we have "handfulls" of hair, it isn't in is in individual strands that have let go.  This is what I had after running my hand through my hair two days after the shower experience.  It's messy.  It's annoying....and I don't like hair as a condiment... I said something to my husband about it being time to shave my head.   "Can't you wait a couple of days?" Sigh....he has a hard time with I waited ....until I got a hair wrapped around the head of my electric toothbrush.  That was the end.....

So..out popped the electric hairclippers and I buzzed away....Little stubs have been left, and I don't have anyone that I could ask to really do a close job (one of my daughter's high school friends who shaves his head did it for me the last time) I left it.  No big deal...except I am discovering something interesting. It appears that it all might not fall out.....I have hair stubble on the sides...but not a lot on top.  I wonder if I could pull off a comb-over???? NOT!

So the problem I have at present is that my wigs (cranial prosthesis per my prescription) are among the missing.  I can't figure out what I did with them...both the butchered one from 1994 which is really comfortable but unwearable in public since I took it to a hairdresser who charged me $60 to make something which has ragged ends and is basically a mess, and the one I bought at a local shop which was not personally fitted to me but looks presentable...and doesn't feel right after wearing it for a while.

I've looked and looked and I have no idea what I have done with them.  So I have been wearing scarves...It is odd because I get little crinks in my neck while tying them.....and on Easter my family (not my immediate family) asked me if I would tell their fortunes....

I'm tempted to take a trip to Connecticut and have the guy who fitted me in 1994 do it again.....I can't seem to find a place like that one here.  I must admit, it was sort of fun....I have a beef with a local salon I was mischarged and they won't own up to it...but lied to my husband.   So...when I got notice that an appointment I had made 8 weeks ago (and had cancelled but they failed to do that) was coming up, I called once again to cancel....and they said "let me reschedule this for you."  It gave me great pleasure to say "No, that won't be necessary....I don't have any hair. "