Wednesday, July 8, 2009

Update! and my last plea...


As you may or may not know, I will be participating in the Susan G. Komen Breast Cancer 3-day Walk in Cleveland, Ohio in a few weeks. Not sure how many miles I will walk, but I plan on putting one foot in front of the other very much like what I have been doing each day since my diagnosis. Each day presents new challenges, as I reach for "normal" life again. I will never have "normal" life again, and this is why this experience is so important. The money raised will go directly to clinical trials to give me more treatment options for my fight. My goal is to raise $10,000, I don't think I will make it, but I have raised more than I ever thought possible. Again here is my link to my fundraising page:
http://www.the3day.org/site/TR/Walk/ClevelandEvent?px=3011012&pg=personal&fr_id=1294

Ok, now for an update...My last scans showed that I am stable and my chemotherapy regimen has been working well! Since we are unsure of what the little bugger canser cells are doing I am trying to stay on chemo as long as I can. I have started my 8th month of chemotherapy. Because of the concentration of drugs in my system I have started to have some annoying side effects! Again, one foot in front of the other in trying to stay on the regimen as long as I can. Adam and I have exciting news! We have a new child, or cat...Back in March I had a feeling that I was to have a white cat with blue eyes. Adam casually mentioned it to someone he worked with who has a friend who rehabs kittens. A few weeks passed and we heard that an all white baby had been found. A true miracle baby. The only one living out of a litter of 14 with no mother cat. The picture above is what Louie looked a week after he was found. He is a wonderful addition to our family always making us laugh. Louie loves tennis as you can see from our video below. He also a fan of candy wrappers and the mouse arrow on the computer. It is amazing, but he will fetch and return bottle caps! He gets along great with his brother Ralph, pic below! video














I also continue to share my story as much as I can. In March I participated in a video for Living Beyond Breast Cancer. The video was created for Elizabeth Edwards and was viewed for the first time at the Living Beyond Breast Cancer Conference in Philly in April in which I attended.


Also, here is a link to an article I wrote also for Living Beyond Breast Cancer on being your own health advocate!
http://www.lbbc.org/data/newsletter/LBBCsummer09justformeabc.pdf

Friday, February 20, 2009

I am sick of the negativity...literally!

Below is a blog from Sean Swarner. I went to college with Sean at Westminster. He beat cancer twice and has climbed all seven summits. Very incredible things...but my favorite thing about him is what he says below. In these times everyone needs to be thankful for what they have. You may not have as much money...but if you have your health...you have everything!


"I will survive. My cancer will not."
It's always in my face... this whole "cancer thing." People get in touch with me all the time and share their cancer stories. They tell me about their personal struggles with the illness and how difficult they have it, how everyone has it. Every time I get emotional when I read those stories, when I talk to people, and when I visit them in the hospital. One thing that I cannot ever get over, that's absolutely incredible every time I hear from someone I know is battling well... is their Attitude. I can't stress how important attitude is while going through the cancer journey from being sick to well again. It changes your life. I just got an email from a fellow in CA who is battling cancer and read my book, (Keep Climbing). He told me that one line resonated with him more than anything and he started crying when he read it because he was looking for something simple, yet powerful to help him through: "I will survive. My cancer will not." I tell people all the time that cancer is the worst thing that's ever happened to me, but it's also the best thing. It's taught me so much about life and made me realize it's not about having the best cars, the nicest house, the coolest clothing... it's about being true to yourself and doing the best you can every day of your life. You never know when cancer will strike. Make that ANYTHING... you never know when anything can hit you at a moment's notice. It could be cancer, it could be a car accident. Why do people constantly feel the need to prove themselves to others? Why do they always feel like they're not good enough? Why do people worry about stupid things in life when tomorrow might be their last day on earth? It probably won't be, but it could be. There's an old quote about life that goes something like this: "Live every day as though it's your last....because one day it will be." Maybe as we head into the weekend, we should all think about how lucky we are that we have our friends, we have our health, and we have so many things so many aren't fortunate enough to have. Let's all reflect on our lives, do some thinking about how lucky we truly are. Even though our society and our economy isn't exactly the greatest right now, we are all very lucky people and we should rejoice in the simple fact that we're alive.Sean Swarner
Posted by About CancerClimber at 1:59 PM 0 comments

Thursday, February 12, 2009

Kick canser's ass update #4

It has been communicated to me on several occasions that it has been quite some time since I have stolen a few moments of your lives to bring you up to speed with the goings on, in ours.
Well, we have been quite busy with this and that and I will attempt to give you a taster of what’s been on the menu but firstly, before we proceed I need to clarify something.

Recently we read an article written by a woman by the name of Kristin Karr with advanced stage liver Cancer and as part of her ongoing ‘healing’ she put pen to paper. She pointed out that previously when writing she would usually write the word ‘cancer’ with a capital ‘C’….. and with this, she felt that in some sort of way it gave the word strength. So, with this in mind in future ‘cancer’ was to be written with a small ‘c’ with the intention to belittle this horrible little scribble, in fact from now on we will be swatting the little critter even more by spelling it ‘canser’ and thus giving the word the distinct lack of respect it deserves……

OK, so here we go… firstly there is the diving incident…

Erin’s treatment consists of three drugs spread over 3 weeks with one week off. The first cycle however was only 2 drugs as she was still healing from surgery so ‘Avastin’ could not come into the game until cycle 2….

This tale surrounds the first time Erin had the full triple whammy of all 3 drugs together…… treatment went well and as usual we went on our merry way to Whole Foods to stock up on canser slapping leafy green organic veggies! NO PROBLEM!

The drama actually started the Sunday morning after treatment on the Friday..(it’s a bit like the gym…the day after you’re a little sore …but two days after…….yep you know!.)

Following breakfast ‘the boss’ complained of feeling a little light headed….. ‘go lie down was the deduction’….. Unfortunately this time ‘the boss’ didn’t quite make it and collapsed head first into the wooden coffee table with a dive Greg Louganis would be proud of….. the result was the entire rescue services of Chardon, Ohio with all lights a blazing and my precious Sunday in front of the telly with the Manchester United game on the Fox soccer channel ruined!.....the nerve of the woman…. (Well she did spend 6 hours in a collar and a back board so I suppose she suffered enough). Im glad to say she came through her little scare and is none the worse for wear, which is more than we can say for the coffee table!

Im happy to say there have been no more of those types of incidents since and long may that be the case.



Following Erin’s second full chemo cycle we were sent for the first set of evaluation scans, which is the only way, aside from physically touching the lump and offering our ‘professional’ opinions of categorically knowing if the cocktail of drugs being pumped into her is actually doing anything. I must admit to being more than a bit nervous when going through the process as the last time we did was during that dreadful week I would sooner forget…. And hope one day to do just that.
A CT scan and a bone scan was the order of the day and once Erin had finished her appointment with what looks like a giant doughnut, then began the horrendous process of going home and waiting for results. I cannot help but liken this time to that of a convicted criminal waiting for his sentence to be passed down and im sure that anybody who has been in this situation would concur.

Now, after the event it seems like the time passed quickly but im sure at the time it seemed far from that. The day came and the doctor delivered his verdict. Not what he had hoped for BUT….. there was no advancement in the size of the primary tumor and she had displayed what is described as a flare phenomenon in the main area of metastasis in the spine.

This ‘phenomenon’ I have since learned looks like a bright glow when scanned and is a very positive indicator of healing of both bone and the destruction of canser cells and statistically patients displaying this ‘phenomenon’ have responded very well to treatment. So to analogize the situation thus far we have slowed the boulder rolling down the hill and we have actually stopped the boulder from rolling any further…… now we dig our heels in and start to push it backwards.
Our next set of scans is roughly six weeks away and as of today we have great difficulty in finding the lump at all… I want to feel like we are winning but I realize that we are far from done and this thing is no rollover, but we are gaining momentum, there is no question about that.

The time is drawing closer for us to eventually return home and begin to live as normal a life as is possible. I am sure we have far outstayed our welcome at the Painter residence and Ralph & Lauren (The cats) have become far too comfortable. I will return home on the week of the 16th and Erin will follow some weeks later as she is attending the Young Survivor Conference in Dallas Texas, which is a meeting of hundreds of young women, some canser free, some not who are living their lives in the shadow of canser. Im hopeful that this experience will give Erin another boost of strength and the comfort that she is not alone, as well as having the opportunity to be brought up to speed on the latest developments in scientific research and the search for a cure.

This brings me to what WE are doing to help in the search for a cure for this terrible disease and also what you can do to help. On July 29th Erin and Nora (Erin’s Mom) will be taking part in the Susan G Komen Breast canser 3 day walk. Erin's father and I will be on the crew. This is a national event that takes place in more than 15 states and will be attended by hundreds of thousands of people touched by breast canser from survivors to newly diagnosed women or the family and friends that stand by them. Eighty-five percent of the net proceeds of this event go to Susan G. Komen for the Cure. All advancement in breast cancer research, treatment, education and prevention in the last 25 years has been touched by a Komen for the Cure grant.
To read more about this event you can go to http://www.the3day.org/

The funds raised over those three days may very well find the answers that will keep Erin forcing me to watch American Idol and the Bachelor until we are old and grey and may stop your mother, sister, wife or girlfriend from going through what we have experienced these last three months.

If you would like to donate please follow the link below to Erin’s personal page and to all those who already have, we thank you from the bottom of our hearts. This is a goal for Erin and much more than just a fundraiser. She wants to raise the most in Cleveland, and very well could do it…She is currently 3rd with Team ‘Erin’s Hope’ in first place.

http://www.the3day.org/site/TR/Walk/ClevelandEvent?px=3011012&pg=personal&fr_id=1294

On another positive subject, we have just returned from a fabulous weekend break in the Pocono Mountains of Pennsylvania which I can definitely say was well needed after 4 consecutive weeks of business travel. We stayed at the Woodloch Spa, which was an amazing and extremely relaxing place and our ‘chakra’s’ are truly cleansed.

Aside from the obvious spa delights this trip was made all the more special as on the Thursday 5th Feb I asked Erin the question that has never before passed my lips and Im now extremely happy to report that we are officially engaged and Im also now officially broke!! Its an investment I fully expect to mature well and be a gift that keeps on giving for many, many years….


We march on………………..Adam

Monday, January 19, 2009

Kick Cancer's Ass Update #3

I am sure you all are waiting to hear from Adam...He has to travel for work this week and has really been slacking on writing an update. Although, it is pretty boring here buried in snow :-( Over the past month I have continued with chemo each and every week. I got of the house twice to drive with Adam to an appointment for work. I will have him update you on what happened at our dinner away from home. As I see the snow fall right now, I am very anxious to get back to Florida, just to be able to get out of the house! We are still hoping and praying that my treatment is working...we have had a few small signs...I personally know many of you and some of you are new friends! Thank you so much for all of your prayers and thoughts as I fight this battle. I have decided to participate in a very special event called the Breast Cancer 3-Day. It is going to be at the end of July in Cleveland. I'll walk 60 miles over the course of three days with thousands of other women and men. The net proceeds will support breast cancer research, education, screening and treatment through Susan G. Komen for the Cure and the National Philanthropic Trust Breast Cancer Fund. Yikes 60 miles! Nothing really seems crazy to me anymore. I really need your help in raising at least $2,300. That is the minimium I have agreed to. Right now there are 1,036 in my facebook group. I could be done with a donation of only $2.25 per person! Truthfully, I am looking to raise much more. Would you be willing to spare one coffee this week for me? Think about it as taking me out for a cup and give $5.00?Keep in mind how far I'm walking - and how hard I'll have to train. I am doing this for the hope and belief of further treatment options for me! I want to keep plugging :-)You can give online at www.The3Day.org. Just follow the link below to visit my personal fundraising webpage and make a donation. You can also call 800.996.3DAY to donate over the phone.

http://www.the3day.org/site/TR/Walk/ClevelandEvent?px=3011012&pg=personal&fr_id=1294

According to Susan G. Komen for the Cure, approximately 200,000 American women will be diagnosed with breast cancer this year, and nearly 40,000 will die from the disease. That's why I'm walking so far. To do something bold about breast cancer. I hope that you'll share this incredible adventure with me - by supporting me.Thank you! Erin

Monday, December 15, 2008

This makes me really angry...

Just watch this...it makes me angry...it might make you angry too...if you know me. Should I just sit back and except that I am a minority that was just struck with bad luck? If you have a lump in your breast...shouldn't you get a mammogram? Even if you are 31 and don't have a family history? Believe me...I would go back and pay $100,000 for that mammogram...


Kick Cancer's Ass Update 2

Adam's 2nd post...I think we are caught up now!

December 10-

So much choice and so little tasteWhen Erin first heard the words “you have cancer” two thoughts quickly flooded into her mind, 1 – Will I die? And 2 – Will I loose my hair?...... the former WONT happen but unfortunately it appears that the latter will. Now anybody who knows Erin would either relate to her huge beautiful smile or her long curly hair. As I am slowly learning about women (and it’s still very much a work in progress) one thing I have learned is that a woman’s hair is not just a morning inconvenience and the reason to get out of bed at least two hours before they have to leave the house. It’s a badge… their very identity!.. so to face the prospect of loosing their hair is facing the prospect of loosing themselves. Most guys have, (through choice or necessity) shaved off their hair at one stage in their lives…… in my case I quickly realized ‘no I don’t look like David Beckham’ more like a P.O.W and grew it back pronto! Yesterday, Erin made the leap from long curly hair to short curly hair, as her chemotherapy treatment was at last starting to do what it’s supposed to. Chemotherapy essentially enters the body and destroys all fast growing cells such as the type of cells that produce tumors. Unfortunately the little cell killing warriors aren’t quite smart enough to distinguish the difference between the enemy and Friendly fire and also unleash their cell killing fury on ‘good’ fast growing cells, the most notable of which is your hair……. Problem!The theory in ‘going short’ is to minimize the shock element of loosing the locks and retain some sort of sanity….. stress the word ‘theory’The appointment was made at the very ‘swish’ salon (Thankyou Dr Clouser!!) and Erin’s ever increasing entourage bullied its way in. After the initial consultation, myself and Mrs Painter made a hasty retreat in the direction of Starbucks…caffeine and cake.Once the job was done we were then off to our next appointment. Armed with our prescription for a ‘cranial prosthesis’ ……………. Hang on!... I always thought that these ‘technical’ terms were designed to make crappy things sound better… this time…not so much!Now if we weren’t traumatized enough the below picture gives you all some indication as to what came next….If you are African American you have an infinite choice of ‘styles’ with such befitting names as ‘Whoopi’, ‘Oprah’ and ‘Beyonce’……. If not, you’re pretty limited. We decided that you must have one hell of a sense of humor in this type of situation…. You can imagine the rest!We left the store with a blonde ‘crop/bob’ number (think Julie Andrews, sound of music!) and one bright pink bob and when I say ‘bright’ I mean, stop traffic bright…..Erins little way of saying F**K CANCER! We march on……


There are no words! -Adam

Kick Cancer's Ass Update 1

Adam is also blogging, and sending out updates along the way. It is an emotional outlet that helps all involved...and it is a great way to spread the word of what is going on. Here is his first post of my journey:


December 4th...
On Tuesday Erin had two successful surgery's, the first was the removal of one of her ovaries...this is a precautionary measure taken to protect her ability to have children as the blend of Chemo can damage her egg production...her ovary was removed and then cryogenically frozen (like Walt Disney....allegedly). Then when she gets through this shit (and she damn well will) it can be put back in full working order. The second was the insertion of a 'power port' this is an IV access point that is used for her chemo instead of IV in her arm, this is to protect her from having arms like Amy Winehouse! Friday is now chemo day and we will be in for round 3 this upcoming Friday complete with portable back massage pad (the girls gotta be comfortable right?!) and ample selection of gossip magazines (for Erin's use only you understand..)As it stands Erin is having monthly doses of Zomeda, this is a super strength bone medication designed to strengthen bones and repel cancer cells. She is also on a weekly dose of Abraxanne, and in two weeks time (due to the impaired ability to heal (surgery)) she will also be on weekly doses of Avastin. These are pretty cutting edge chemo drugs and if you look at "Avastin with Abraxanne" on the web you will see some very favorable results. The initial rounds of Abraxanne only, have up till today shown no side effects at all..... a positive / negative in Erins eyes as she would prefer side effects as this would be a sign that 'its working'!...myself im perfectly happy to be going to bed with somebody with more hair than me!We have also been encouraged to exercise regularly so 'armed with an ipod and a copy of the Rocky soundtrack' we will be embarking on a regimen Rocky himself would be proud of. Mrs Painter has been placed in charge of nutrition and supplementation, a position she has embraced much to Erin's distaste, and a morning serving of cottage cheese with flax seed oil is the order of the day followed by absolutely every 'green' item in Whole Foods Market swilled down with a glass of Kiffer (a classic example of the internet being both a blessing and a curse!).... in forced support myself and Mr Painter have been placed on a 'red meat only once a week' diet.......there is rebellion in the air.We are all in good spirits and ready to go to war with the little critters, they have picked on the wrong girl! Our plan is to get through the first regimen of chemo and then look to continue treatment back in Orlando as Erin is in need of a sense of normality and the distractions of everyday life.Cancer may be a part of her life but I am determined that it wont become her life, merely an inconvenience.

As they say great victories come from great battles,
Adam