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Join the Journey Newsletter

Summer 2013

In This Issue:
~President's Thoughts
~My Journey
~Making Waves
~Health & Wellness
~Community Events Update
~Pink Ribbon Mentors
~9th Annual Walk




President's Thoughts 

Happy Summer to all!
 
It has been a long winter season and it looks as though we can finally put it behind us.    June is one of my favorite times of year as it marks the end of another successful school year and the beginning of the summer season which is filled with many outdoor activities.
 
At Join the Journey we are now finishing the Winter Workout sessions.  The workouts were held every Wednesday night at the International Dance Studio.  Although ‘workout’ sounds intimidating it was an hour of fun, unique, and invigorating activity.  Thanks to Terri Allred, the Executive Director of Join the Journey, and owner of the International Dance Studio every Wednesday offered a wide variety of activities such as belly dance, tai chi, shimmy fit, yoga, swing dance, and line dance to list a few.  A special thank you to all of the many instructors who volunteered their time and expertise for the Winter Workout sessions.
 
June begins dragon boat season at Silver Lake.  Making Waves is a floating support group that paddles in our boat, Waves of Hope, on Wednesday nights.  We welcome all comers - breast cancer survivors and supporters - to join us behind the fire station at Silver Lake at 5:40pm for warm ups and paddling from 6-7.  No experience is necessary and all equipment is provided.  Look for a Join the Journey presence in the Rochesterfest parade (June 28) and at Western Days (August 10) in Chatfield.  
 
June means gearing up for our major fundraising event, the Join the Journey Walk.  Sunday, September 15, is the date of this year’s walk at Mayo High School.  Please put the date on your calendar and register beginning June 15 to walk with friends and family.
 
Be sure to check the events calendar on the Join the Journey website, www.jointhejourney.us, for other ongoing activities.  We welcome you to come join us and look forward to meeting you.  Thank you for your support.  I wish all of you an enjoyable and safe summer.
 
 
With warm regards,
Kathy Williamson
Join the Journey President



My Journey 
 
By Sue Whitcomb

Have you ever felt like you had the world by the tail . . . where things were going so well that it was unbelievable? That's where I was in 1995. Our daughters were 2 and 4, I was in private practice as a psychologist, and my husband was self-employed making music instruments. We were living in a city of a quarter of a million people in Michigan, so there was no end to fun and interesting things to do and fun people to do things with.

We decided to move to Chatfield where my husband’s large extended family resides, and in preparation, I had my annual physical. I was devastated by my doctor's words: "you have breast cancer", the disease that killed my mother 18 years prior. I still remember my doctor asking “Do you have a surgeon that you like to use?” Did he really think that I kept a surgeon on retainer so that when I had a slow week I could call and say “I’m free from Wednesday on. What body part should I have removed or modified?” Lucky for me, the tumor was small and a lumpectomy was recommended. Because of a substantial family history of cancer, I also had radiation and chemo, which I finished after we moved here. I was elated to keep my hair. Life went on and my diagnosis became a memory as we settled into life in rural Minnesota and my growing children became involved in all things related to music, theatre and running.

2005. The world had me by the tail. Starting on New Year's Day, my 89 year old father's health started to fail. He lived alone 650 miles away. In six months, I drove to Michigan 10 times to be there when Dad had various crises and transitions and needed me. During this time, I continued to work full time and I attended all performances, concerts and meets that involved my children. In April, just a few days after I’d returned from a trip to Michigan, I received a call that Dad was bleeding out and if I wanted to see him alive, I needed to get there ASAP. I got the call at 7:30 pm and was on the road by 8 pm, driving straight through for 15 hours and arriving at the hospital at 11 am. Thankfully, I was able to say goodbye before he died.

After that there were more trips back to help my brother settle the estate, to clean out the only home we had ever known and get it ready to go on the market, and to decide what parts of our childhood we wanted to cling to (fiercely!) and what things would go into the estate sale.  In July, driving back home from my 10th trip, I realized how totally exhausted and spent I felt. I had been running at full tilt boogie for six months with no down time. I had gotten creative about saving time anywhere I could. Even showering had become a 45 second process that included washing and conditioning my very long hair but no time for shaving or grooming. I decided on that trip that I wasn't going to go back to Michigan again that year. Anything left to be done, my brother would have to do solo.

It felt so good to make that decision and feel the tension leave. It felt so good that I made another decision: I decided that instead of driving 15 hours and arriving home in the middle of the night, I was going to stay in a hotel. I couldn't wait to have a real ‘stay in the shower until the water runs cold’ shower.

I took the next exit and checked into a Red Roof Inn. I threw my stuff on the bed, tore off my clothes and headed to the shower. When I got into the bathroom, I froze. There in the mirror I saw a big lump rising out of my right breast.  I have never felt so terrified, so hopeless, so desperately alone as I did at that moment. My mind went to bizarre corners and I found myself wondering if I could get a refund on a recent magazine subscription because I knew I would expire before the subscription did.

Back home, I was able to see my primary care doctor the next day and she confirmed via biopsy and exam that it was breast cancer. Unfortunately, answers to questions like what lay ahead for me would require more tests. Since it was 4 p.m. on a Friday, those tests had to wait until the following week, giving new meaning to the phrase "long weekend".

That week was a blur. In the end, I learned that my tumor was 14 centimeters (i.e. just shy of 6") and had, amazingly, stayed put. I would later learn that only one lymph node contained cancer cells and that this cancer was not related to my first breast cancer. I chose to have a bilateral mastectomy. This wasn't difficult for me to accept – my breasts were trying to kill me!  But my hair was another story. It had never done anything to me and I dreaded going bald.

The night before surgery, I donated two feet of hair to Locks of Love. I worked on accepting my new appearance post-surgery and lost all of my hair by the second round of chemo. I found bright colored scarves and learned how to tie them on my strange looking head. More importantly, I found a new world of friends and activities in the survivor community. It is so uplifting and empowering to be in a group of people that have been there and done that. My priorities have changed, too, and I am happier now. I am a Pink Ribbon Mentor, co-facilitator of the Breast Cancer Support Group, a member of Making Waves, a volunteer for the Join the Journey 10 Mile Walk and on the planning committee for Making Strides Against Breast Cancer. It is hard for me to believe how far my life has come in the last eight years and what an incredible journey life continues to be.

 



Making Waves
A floating support group...

Making Waves, a floating support group, has survived the l-o-n-g winter with the help of the Winter Work-Out Series.  We are so grateful to the staff of the Rochester International Dance Studio, Fred Astaire Dance Studio and work out instructors, who kept us moving and shaking and having fun through those cold weather months.

The exercise and camaraderie kept us warm and strong and made us all the more eager to begin our paddling season! Join us at Silver Lake (behind the Fire Station) at 5:45 every Wednesday all through the summer as we paddle our dragon boat, Waves of Hope.  All breast cancer survivors and supporters are welcome and no experience is necessary.  We provide the life jackets, paddles, and fellowship – all you need to bring is a readiness to have some fun! 

Preliminary plans are being made to join the larger community of breast cancer survivors at dragon boat races in the region.  Races are being held at Lake Phalen in St. Paul in July, Fort Dodge, Iowa in August and Dubuque, Iowa in September. We are also starting to make plans to participate in the International Dragon Boat Festival to be held in Sarasota in October, 2014.  It is an unbelievable thrill to meet and mingle with all the survivors engaged in this sport. Survivors who have overcome the challenges of breast cancer treatments come together with an enthusiasm that is infectious and inspiring. We hope many of you will set aside time to come and enjoy the dragon boat spirit!

A Big THANK YOU to all who picked up trash around Silver Lake on April 25 for the Rochester community event, A LITTER BIT BETTER. There were ten of us helping to make Rochester a Litter Bit Better and Judy got A LITTER BIT RICHER as she found a $10 bill. After picking up trash together we enjoyed visiting with old friends and new at Fiesta Café for bite to eat. If you’d like to join us for our next social event, please e-mail Sheila @ Makingwavesteam@gmail.com and ask to have your name placed on the mailing list.  All are welcome!

Submitted by,
Sheila Kramer





WORDS; What words bring compassion, comfort, encouragement and hope?
Submitted by Marilyn Kocer
 
I have often wondered what unique words are used by the Pink Ribbons Mentors as they meet women and men on their breast cancer journey.  What is said to them during their cancer experiences at Methodist Hospital, Gonda 10 Chemotherapy, Gonda 2 Breast Clinic or Mayo 12 with Dr. St. Cyr?
 
I recently asked Pink Ribbon Mentors, “What thoughts or advice do you usually share with those that you mentor?  We each have a unique experience with our own journey as do the women and men that we are mentoring.  Maybe you have a one liner that you always share.  Or maybe it is a statement or question that you leave with them to ponder.”  Here is what they said:
 
 

  • Mentoring begins with listening.  I see my role first as a listener.  I always ask, “How are you feeling?”  Then I ask them to tell me about themselves and about their diagnosis.  This helps me understand their state of mind, their support structure and their level of knowledge.  What do they want or need from me?  Once I gain a sense of where they are at, I try to keep the topics positive and future focused while being compassionate and caring.  I always share with them that I, too, have walked this road. “It may be difficult at times.  But we, the Pink Ribbon Mentors, are here to help you on this journey and navigate this road with you. With the love and help of your family and friends you will make it through this by taking one step at a time.  Looking down the road too far can be overwhelming, so just concentrate on what is right in front of you and keep stepping forward.”  

 

  • Patients want and need to talk about being afraid and to express their concerns and questions about cancer.  I try to give them that opportunity.  Some patients have fears that they want to verbalize but those around them act like cheerleaders and don’t want to hear anything that is not positive.  Other patients hear negative comments from well meaning people (“I know how you’re feeling because my cousin just died from breast cancer”).  I encourage them to stop those conversations immediately and not worry about being rude.  I try to help them see that breast cancer is just a part of their life and the day will come when their diagnosis will not be on their minds 24/7.  Some patients are unable to verbalize their feelings because their spouse or family wants them to do things their way.  I encourage them to call on their Higher Power to help them make decisions. A few years down the road, they need to feel that the decision they made was right for them.

 

  • I tell them, “Make sure to get your rest – your body needs it.  Don’t be afraid to ask for help and delegate.  Everyone wants to help so why not let them do the laundry, vacuum and cook a meal.  Make a list.  It makes the helpers feel good too!” 

 

  • To help mentees sort out their feelings, I encourage journaling.  Research has linked journaling to positive outcomes for most people.  I tell the patient about the advantages for them – by reading over their previous entries they can see progress and improvement that they might have otherwise not noticed.  A journal is a good place to track symptoms and side effects to bring to the attention of their physician at the next visit.  Journaling allows for the expression of feelings in a safe environment.  Sometimes it can result in a conversation that leads to an effective plan of action.  Just writing your feelings down can help to let them go!

 

  • I feel that I make the most impact with women who are receiving their chemo treatment as I answer their questions about chemo and what to expect during and after treatment.  I always ask if they are expecting to lose their hair.  If they are, I tell them many women have a hair shaving party with their family or friends.  I did.  It was a fun and positive experience and one thing that I could be in control of – so why not have some fun!

 

  • I always leave patients with our PRM brochure and business card and tell them they can call and we will match them with a mentor at any time during their journey.  Some may not be receptive at the time, but I had one woman whose husband said, “Give her a chance!” and she did!

 

  • Being a Pink Ribbon Mentor has brought me full circle in my breast cancer journey.  It has made me a better person in so many ways.  I am a survivor for a reason.  Sharing my experience or being the person who listens and understands is just as therapeutic for me as it is for the mentee.  Each time that I have completed a volunteer shift, I walk out with a smile on my face, knowing I have touched someone’s life and they have definitely touched and enriched mine.

 

  • It is important to keep a positive attitude while on this challenging road. I am proof that there is life - good life - after breast cancer.  I always close our conversation by telling the mentee that she is a strong and resilient woman!

 
What wonderful WORDS from a wonderful group! Thank you, Pink Ribbon Mentors!
 

_______________________________________________________

9th Annual 10 Mile Breast Cancer Awareness Walk- September 14, 2013

Come Celebrate the Journey With Us!  This is the theme of our 9th Annual Breast Cancer Awareness Walk, to be held on Sunday, September 15, 2013.  Come and celebrate all breast cancer survivors and honor those who have completed their journey. 

The 10 mile walk starts at Mayo High School at 9am, but come early to enjoy breakfast goodies and the wonderful spirit of hope and support that floods the area as the walkers start congregating.  You will want time to browse the educational area, to experience a mini massage, and to learn about the latest breast cancer treatments from Mayo Clinic staff members.  Sign our Walk Mural and fill out your placards to recognize your loved ones with breast cancer.  Register for door prizes and enjoy a photo-op with your friends. Walk as little or as long as you want – 10 miles or 10 steps!  Try a dragon boat ride at Silver Lake and refresh at the Five Mile Stop with snacks, music and activities. Cap off the morning with a delicious lunch from Catering by Design and music by Mini Booker! 

We urge everyone to pre-register @ www.jointhejourney.us. The registration fee is $50 which covers your T-shirt, lunch and all festivities!  Ask your friends or family members to form a team with you – a great way to spend time with one another, united in a celebration of support and contributing together to a fantastic cause!







 

CONNECT WITH US


Officers:
President
   -Kathy Williamson
Vice President
  - Rochelle Befort & Lori Pierce
Treasurer
  -Jeremy Borell
Co-Treasurer
  -Cyndie Kahn
Secretary
  -Diane Trisko

Members:

- Cindy Benike
- Ellen Cascino
- Lori Denison
- Karen Fryer
- Mary Hurt
- Connie Lexvold
- Ann Mehnke
- Linda Miller
- Jan Schmidt
- Heather Stockmo
- Janet Vittone


Executive Director:
  -Terri Allred
Office Manager:
  -Cheryl Blouin
Office Assistant:
  -Gail Storing



VISIT OUR WEBSITE

Join the Journey

QUESTIONS? EMAIL US:

info@jointhejourney.us



Litter Bit Better

Every year, Making Waves and Join the Journey take to the streets collecting litter to help make Rochester beautiful.  We clean up around Silver Lake and the fire department as our way of saying thank you to Rochester for supporting us.



Tough Enough to Wear Pink

by Cyndie Kahn
On April 5th, I attended my first ever “Tough Enough to Wear Pink” event. It will definitely not be my last.  It was so heartwarming to see the sea of pink throughout the arena; the support this event gets from the community is phenomenal.  It was a wonderful evening with more than a few cute cowboys and some really tough bulls adding to the excitement.  These guys had some tough rides; there was never a dull moment.  The announcers and the clowns also put on  a great show for the crowd.  They were funny and entertaining throughout the whole event.  I encourage everyone to give it a try next year.  I’m sure you won’t be disappointed.






Rochesterfest Parade

Join us on Friday June 28 for the 2013 Rochesterfest Parade.  We will be pulling Waves of Hope, handing out candy and 2013 Walk brochures and visiting with folks along the parade route.  We would love to have you walk with us, or wave to us from the audience.  Hope to see you there!

Rochester Honkers Game

We are so happy to participate in the First Alliance Credit Union Community Partner Program with the Rochester Honkers. On Saturday June 22, Join the Journey will have a table and provide information for attendees at the game.  We will be recognized during the game and then enjoy watching Rochester's home town baseball.  Please join us for this evening home game at 7pm.






Relay For Life: Friday, July 12th, 2013.

No matter who you are there is a place for you at Relay For Life.  Our Join the Journey Support Group will have a team participating on July 12 and would love to have you join the "Swinging Survivors."  Opening ceremony is at 6:30pm immediately followed by the ‘Survivors Lap’.  If you are a survivor, please come walk with us for this touching tribute. You do not have to be a member of a team for this lap.  If you are unable to join our team you may still donate to this great cause. Go to www.relayforlife.org for more information, to donate or to join the “Swinging Survivors”.  If you have other questions contact Cyndie Kahn @ 507-534-3866 or @ BigWheeler10@aol.com.


Artigras

Food, entertainment, art.... what more could you want?  Join the Journey will be participating in this fabulous community event again this year.  We will be at Mayo Park on Saturday August 17 from 9am-6pm.  Come and see us!









Breast Cancer Surgery and Radiation Treatment Updates

Medication update for HER2-positive breast cancer

In February, 2013, a new medication was approved globally for the treatment of women who are diagnosed with HER2-positive breast cancer.  Women who are HER2-positive make too much of a certain protein, human epidermal growth factor receptor 2 (HER2) which promotes the growth of cancer cells. Approximately 25% of women with breast cancer are HER2-positive.

The new treatment is called Kadcyla and is a combination of trastuzumab and mertansine.
This combination has been shown in breast cancer studies to have superior outcomes compared to when each of the medications is used separately.  Kadcyla uses the ability of trastuzumab, manufactured by the company Genentech, to target the specific human growth factor cells. Therefore, healthy cells in the body are bypassed and only the cancer cells are targeted by trastuzumab. Then mertansine destroys the HER2 cell.

Kadcyla can be used for patients with HER2-positive, metastatic breast cancer who have been treated with trastuzumab or have disease recurrence within six months of the initial treatment.

Kadcyla is given by an intravenous infusion every three weeks until there is disease progression or until side effects are intolerable.

The main side effects that patients experience are:
a)  nausea (40%)
b)  fatigue (35%)
c)  thrombocytopenia (30%), which means platelets decrease (platelets help blood clot normally)
Other side effects are headache, elevation of liver tests and fevers.

If patients are on medications such as ketoconazole (for fungal infections) or ritonavir (for HIV infections), the level of mertansine  may increase to toxic levels, so always let your doctor know what medication you are taking.

Kadcyla is currently available at the Mayo Clinic for treatment of HER2-positive breast cancer.  Other ongoing studies are also looking at using this medication for gastric (stomach) cancer.

For the 25% of women with HER2-positive breast cancer, this is another step forward in treatment options.


Submitted by,
Janet Vittone, MD


























 
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