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It’s Lymphedema Day!

I marked Lymphedema Awareness Day by writing my heart out in the Buffalo News. Hoping to help somebody out there who suffers in silence, who suffers without knowing why.

http://refresh.buffalonews.com/2015/03/05/cancer-recovery-especially-know-lymphedema/

Keynote speaker?!

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This past week has been a whirlwind of activity and news. First and foremost, Patrick and I got married! What a wonderful day full of family, friends and love!!

As you have read, part of our mini-honeymoon is the Walk for Lymphedema and Lymphatic Diseases on Sept. 14 in NYC. Well, I received an exciting call a few days before the wedding. The organizers of The Walk, the Lymphatic Education & Research Network, asked ME to be a keynote speaker! I’m humbled and floored to have been chosen!! I can’t wait to share my story in the hopes of raising awareness of this condition.

Here is the blog post I was asked to write for LE&RN’s website:

http://lymphaticnetwork.org/living-with-lymphatic-disease/your-stories/

In the meantime, I congratulate all the walkers and sponsors, and I encourage patients to keep fighting for answers.

 

As promised …

fb cover photo fall first ride april 2012

With every fall, we must rise and ride on. (Photo by Patrick McPartland)

   Here are a few blog posts I’ve added to the site. They are from my journal that I kept as I learned how to ride a bicycle to participate in the 2012 Ride for Roswell.

   The entries are very personal, but I’m hoping that sharing the information will be helpful to someone out there.

   Here are the links for posts I’ve added so far. More posts and some photos will follow 🙂

Survivorship: What a ride: https://lymphelisa.wordpress.com/2012/03/01/survivorship-what-a-ride/

Riding on a mission: https://lymphelisa.wordpress.com/2012/03/15/riding-on-a-mission/

Riding on the past: https://lymphelisa.wordpress.com/2012/04/21/riding-on-the-past-63-days-till-the-ride/

Riding on ambition: https://lymphelisa.wordpress.com/2012/04/24/riding-on-ambition-60-days-till-the-ride/

Riding on persistence: https://lymphelisa.wordpress.com/2012/04/26/riding-on-persistence-58-days-till-the-ride/

Riding on perseverance: https://lymphelisa.wordpress.com/2012/04/28/riding-on-perseverance-56-days-till-the-ride/

Riding on determination: https://lymphelisa.wordpress.com/2012/04/30/riding-on-determination-54-days-till-the-ride/

Riding on caution: https://lymphelisa.wordpress.com/2012/05/03/riding-on-caution-51-days-till-the-ride/

Riding on faith: https://lymphelisa.wordpress.com/2012/05/06/riding-on-faith-48-days-till-the-ride/

Riding on publicity: https://lymphelisa.wordpress.com/2012/05/25/riding-on-publicity-29-days-till-the-ride/

Riding on compassion: https://lymphelisa.wordpress.com/2012/05/27/riding-on-compassion-27-days-till-the-ride/

Riding on empty: https://lymphelisa.wordpress.com/2012/06/04/riding-on-empty-19-days-till-the-ride/

Riding on hope: https://lymphelisa.wordpress.com/2012/06/06/riding-on-hope-17-days-till-the-ride/

Riding on self-confidence: https://lymphelisa.wordpress.com/2012/06/10/riding-on-self-confidence-13-days-till-the-ride/

Riding on progress: https://lymphelisa.wordpress.com/2012/06/17/riding-on-progress-6-days-till-the-ride/

Riding on love: https://lymphelisa.wordpress.com/2012/06/22/riding-on-love-1-day-till-the-ride/

Riding on success: https://lymphelisa.wordpress.com/2012/06/23/riding-on-success-ride-day/

Riding on survivorship: https://lymphelisa.wordpress.com/2013/06/23/riding-on-survivorship/

   BLANKET DISCLAIMER: The writings in the links above comprise an account of my experiences with lymphedema, cancer, exercise and lifestyle choices to maintain my personal health and weight goals. No part of this account should be taken as medical advice, and each reader should consult his or her physician before beginning, changing or ending any treatments, exercise routines or diets.

One month left

With only one month to go until the big event, we’ve hit 100 baskets for the regular auction. I can’t express how truly grateful I am to my family and friends and to the businesses that have so generously given.

When I was tossing around ideas for my next “project” before deciding to hold Stick it to Cancer instead of a bridal shower, I thought about writing a book about my experience with learning how to ride a bicycle for the 2012 Ride for Roswell. Since this thought a few years ago, I have written a lot. I turned a journal into chapters, cleaned up the writing, chose some of the Lisa-approved photos that Patrick so patiently shot as I was learning and even began the layout process. Nearly two years later, I’m still not sure if publishing a book is the right thing to do. I get stuck in the thought: “Who is going to care?”

Of course, those who follow me in cyberspace care, or otherwise you wouldn’t be reading this! But for the wider audience, I’ve decided that a better idea is to use this already-established forum to share the Ride for Roswell story. Even if it helps just one of you, I know it was worth sharing! Maybe someday, when I’m more financially able to take a chance with real publishing, I’ll issue it to a wider audience.

Over the next few days, I’ll post the “chapters,” hopefully where they belong in the timeline of this blog. As I do, I will add the links to this post so the story is easy to follow.

Thanks again to everyone for all your support. See you next month!

Prizes rolling in already!

kindle and gogo pillow

I am so excited to report that less than a week after we sent out donation letters for our bridal shower/”4th Stick it to Cancer Blood Drive and Basket Raffle,” businesses and individuals already are being so generous!
 

Added to the list of large prizes with the Lady Gaga tickets is a Kindle Fire HD (8GB) with a camo GoGo Pillow, donated by me. We had an extra unopened GoGo Pillow at home because when we ordered Billy’s, it came with a twin. He didn’t need two, so I stored the other one still in its wrapper. I wanted to do more than put the pillow out as a prize, so I found a great Kindle to go with it!

My family also has been so supportive! Mom is storing all the baskets at her house, my sister, Mary, is organizing and creating baskets, and my aunt, uncle and cousin have made donations, too. My aunt, Kathy Trimper, is providing $25 gift certificates for use with my cousin, Christine McGinniss’ Avon business, and Aunt Kathy and Uncle John are offering a Keurig and a large bakeware set as prizes.

We have also:

-Awesome baked goods from our friends Jill Keppeler and Lisa Bell Parrish as well as family members Margeret Johnson, Mary Codick, Christine McGinnis and Aunt Liz Juszczyk.

-Many awesome baskets from Aunt Liz, cousin Becky Hernandez and the rest of the family!

-Avon gift certificates (4) and basket from cousin Christine McGinnis.

-A $50 gift card to Stuffed Chocolate in Williamsville from Gregg and Michelle Prince.

We also have received wonderful donations from the following businesses:

-Buffalo Sabres yearbook autographed by John Scott. www.sabres.com

-Buffalo Bisons reserved seating passes. http://www.milb.com/index.jsp?sid=t422 

-Anderson’s gift certificate for an ice cream cake or pie. www.andersonscustard.com

-BAC for Women 3-month membership (21 and older). www.buffaloathletic.com

-Pepsi Co. generously offered cases of its product for use during the event. We also may work some into a fun snack basket! www.pepsico.com

-Gift certificate for a full car detail from David Chevrolet (thank you, Ben Zaino!) www.davidcars.com

-Gift certificate from Adventure Landing for 4 free games of golf or 100 tokens www.adventurelanding.com/parks/buffalo

-Gift certificate for a wine/chocolate tasting for six people from A Gust of Sun Winery & Vineyard www.agustofsun.com

-Mighty Bucks from Mighty Taco www.mightytaco.com

-$25 gift certificate from Salavatore’s Italian Gardens www.salvatores.net

-$25 gift certificate from Russell’s Steaks, Chops and More www.salvatoresgrand.com

-$25 gift certificate from Premier Wine and Spirits www.winedeals.com

-$25 gift card from Jim’s Steak Out www.jimssteakout.com  

-Three one-hour passes to SkyZone www.skyzone.com/Buffalo

-Free birthday party with six guests from Adventure Landing www.adventurelanding.com

-Gift certificates for a large pizza with one topping from Papa Leo’s www.papaleos.com

-Gift certificate for a Swedish massage from Massage Suite and Spa www.massagesuiteny.com 

-$25 gift certificate from Chef’s restaurant www.ilovechefs.com

-3 vouchers for organ concerts (2 adult admissions per voucher) from Riviera Theater www.rivieratheatre.org

-Two $10 gift certificates for Reids on Elmwood https://www.facebook.com/…/Reids-on-Elmwood/187627951279962

-Wendy’s meal certifiates. www.wendys.com

-Basket from Shofield Residence Nursing Facility & Rehab, where my niece, Meghan, volunteers weekly. www.schofieldcare.org

-Gift certificates from Delta Sonic. www.deltasoniccarwash.com

This is in addition to the 50+ other prizes that already have been donated by family and friends! We’ve got prizes for everyone — girl/boy, young/old — including lottery trees, children’s fun packs, Girl Scout cookies and more!

Thank you to the businesses and individuals for their support!

While the event seems so far off, it’ll be here before we know it. Please consider spreading the word! Patrick and I want to share our happiness with the community, so the more the merrier!

Time left till event:

http://bit.ly/1iZmCJV

We’re in the news!!

I was so touched to read this item in the Ken-Ton Bee today! Naomi is a great reporter and story-teller, and I’m honored to have been featured in her column! Read it here:

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I sent out the press release for this year’s Stick it to Cancer/Community Bridal Shower this past weekend, and I’m happy to see that it’s been released in a few media platforms. Here are some other locations where you can find news about us!

http://tonawandas.wgrz.com/news/community-spirit/161771-bridal-shower-fundraiser-offers-attendees-chance-take-home-gifts

http://www.thesunnews.net/news/617-Stick_it_to_Cancer.html

http://tonawandacourier.com/stick-it-to-cancer

Here’s an oldie but a goodie from our event two years ago 🙂 It would be wonderful to get this type of coverage again!

http://tonawandas.wgrz.com/news/news/66160-tonawanda-woman-learning-bike-ride-roswell

Thank you again for all your support!

It’s time to STICK IT TO CANCER once again!

stickittocancer2deck NEW 2014

When the question arose as to whether I wanted to benefit others through a joyous occasion in my life, my response was brief and immediate: “I do!”

At the end of this year, I will celebrate my 10-year anniversary of being cancer-free, but I wanted to celebrate this and my upcoming nuptials together, so I decided to replace my traditional wedding shower with a fundraiser for Roswell Park Cancer Institute. I also hope to raise awareness about lymphedema, a chronic swelling from which I have suffered since 2008.

My fiancé, Patrick, and I, along with our family and friends, will hold the fourth Stick it to Cancer Blood Drive and Basket Raffle from 2 to 7 p.m. Saturday, June 28, at the Town of Tonawanda Boys & Girls Club, 54 Riverdale Ave.

It wasn’t long after Patrick dropped to one knee on St. Patrick’s Day 2013 – in the middle of Niagara Square during the annual parade in Buffalo – when I realized that the summer of 2014 was becoming overbooked. We had already set the date for Stick it to Cancer before the proposal, and with an August wedding, I felt I was asking too much of my family and friends. I thought about how wonderful it would be to give to the community instead of amassing gifts and decided to replace the shower with the fundraiser.

Stick it to Cancer began in 2009 to mark my fifth anniversary of successfully fighting cervical cancer. The third event in 2012 featured me taking my first bike-riding lesson at age 36 so I could participate in the Ride for Roswell. I credit the cancer research facility with properly diagnosing and treating secondary lymphedema in my left leg, which developed in 2008 as a result of a hysterectomy to cure the cancer. The facility also holds a special place in Patrick’s heart, as the staff there took wonderful care of his mother after her cancer diagnosis.

This year’s proceeds will benefit Roswell and the 2014 Walk for Lymphedema and Lymphatic Diseases in New York City, for which Patrick and I will form a team. Sponsored by the Lymphatic Education and Research Network (LE&RN), the walk raises awareness as well as funding for research. While Patrick and I aren’t sure if we’ll make it to the Big Apple to physically take part in the walk in September, our financial support is vital in helping LE&RN to develop treatments, spread awareness and hopefully someday find a cure.

With the CDC reporting that 12.7 million people around the world are diagnosed with cancer annually, it’s hard to believe that so little is known about this destructive aftermath of treatment. We want to raise awareness so those seeking treatment for cancer know that lymphedema is a very possible side-effect that not only causes quality-of-life issues, but can lead to infection and other problems if not properly diagnosed and treated.

Stick it to Cancer once again will include family-friendly entertainment by our awesome friend, Tom Bender, basket raffles and other prizes. Wedding guests are being directed to this event and are encouraged NOT to bring gifts, while the public also will be invited so we can raise more funding and awareness. Admission will be $10 per person, which includes baked goods, non-alcoholic beverages and a card of basket raffle tickets. Children 10 and younger will be admitted free. Additional basket raffle tickets will be $5 per card or five cards for $20. Pizza will be sold, and a 50/50 split also will be available.

One of the main prizes that I’m most excited about is a pair of tickets to Lady Gaga’s concert in July at the First Niagara Center. I have wanted to see her in concert, but I always feel guilty spending that kind of money on myself. To ease my guilt, I purchased four tickets and donated two to Stick it to Cancer. The winner will enjoy the concert with Patrick and me in the 200 level!

The American Red Cross will also hold a blood drive from 2 to 6 p.m. Those only donating blood will be able to do so without paying admission, and presenting donors will receive a coupon for free admission into the fundraiser if they choose to attend.

For more information, to make an appointment for the blood drive or to make a donation, email me at lisaann_johnson@yahoo.com.

This event has raised several thousand dollars over the past five years, and I’m so thankful for all the support from family, friends and other community supporters. You are all the best!