Wednesday, September 26, 2012

Guided Imagery Gone High Tech-"Whip Cancer"


I just read about this app on an oncology nurse forum.  "Whip Cancer" is a 17 minute guided imagery session.  You pick your type of cancer on your iPad or iPhone and up pops an anatomical drawing of the part of your body that is affected by cancer.  

If you have ovarian cancer, an image of the female torso with anatomic drawings of your ovaries, fallopian tubes pops up.   You can also bring up your type of tumor and you can place it anywhere you want on the screen.  You can place it right on your ovaries.  The site speaks of being able to make your tumor disintegrate and leave your body, as a very calm and zen-like voice helps you to relax.

You can also tap the screen on the "tumor" and there is an extremely lame "explosion" with no noise that occurs.  In its' defense,  it is not a video game.  Also, they are trying to get you to meditate and relax so the idea of a tumor exploding all over the place might not be what they are going for!!

The pros:
  • You can visualize and target in on your particular body part affected by cancer
  • The woman's voice on the app is very calming and relaxing.
  • It is only $2.99 and you have it right with you on your phone.  This would be helpful if you are sitting in the chemo clinic all stressed out and needing a little calming down.  Just put your earbuds in and take deep breaths and relax.  
  • I like that the guy who invented this app did it in honor of his sister in law.  Apparently she was having difficulty visualizing where her tumors were and she wanted to focus on the treatment destroying the tumors in her head.
  • At 17 minutes long, it is something you could conceivably use at the start of each chemo session or to help you fall asleep at night.

The cons:
  • I really wanted to see the tumor blow up with all kinds of rocket launchers, bells and whistles...BE GONE WITH YOU FREAKIN CANCER!!!  The cancer graphic is kind of lame.  Although I did enjoy repeatedly tapping it, to get it to break up into small pieces.

If you are someone who appreciates guided imagery, or even something to help you fall into a nice nap, at $2.99 what do you have to lose except for $2.99?

Also, I just downloaded it and only did one session, so maybe there is more to it than I know.

Here's the founder explaining this app:       
 
 
 
Bottom line:  may be useful for some of you.  Hey, if it helps even one person, it is worth it!!!
 
 
Here's the blurb from the company who makes it:
           Purchase at iTunes Store for iPhone & iPad
"Whip Cancer empowers people with cancer to mobilize their immune system to actively bolster their cancer treatments and recovery. They participate in their own healing by placing vivid images of their cancer cells onto stunning anatomical illustrations at the location of their cancer, and then participate in a guided imagery audio session to deeply relax and focus on cancer cell elimination. “Imagery is frequently used to empower patients to be active in the healing process, thereby reducing stress and focusing the body's energies on targeting the disease” says Zack Spigelman, MD, Internist, Hematologist and Medical Oncologist at New England Baptist Hospital in Boston. • Select cell photos from 108 cancer types • Place cells onto anatomical images on the location of your cancer • Use a 17 minutes guided imagery narrative that you can control • Zoom in on the anatomical image • Make cancer cells larger or smaller, fade away and then reappear • Tap the cancer cells to make them break apart ||||||| © Copley Raff, Inc. 2012 ... for iPhone & iPad"
 

Thursday, September 13, 2012

Special Interactive Webinar About Ovarian Cancer 9/20/12


These are not my words, but they share my sentiments.  This announcement comes from an organization that is near and dear to our hearts....The M. Patricia Cronin Foundation!!!  They are a member of the Ovarian Cancer Awareness Coalition.  See their invitation below.




SAVE WOMEN'S LIVES!!!

SPECIAL WEBINAR THURSDAY, SEPTEMBER 20TH AT 12 PM AT:
 

 
"On Thursday, September 20, 2012, at 12:00 PM EST the Ovarian Cancer Awareness Coalition will be hosting a 60-minute informational and interactive webcast about ovarian cancer. The webcast will focus on getting the facts and knowing the signs of ovarian cancer as well as treatment and research. During the webcast we will be talking to doctors from the Dana-Farber/Brigham and Women's Cancer Center in Boston as well as taking live questions from viewers."


There will be a link available to view the broadcast on the Ovarian Cancer Awareness website above.



The Massachusetts OvarianCancerAwareness.org Coalition is composed of:


Also check out their webpage to see a recent PSA to discuss some of the signs and symptoms of ovarian cancer with someone else who is near and dear to our hearts.....the very fabulous Anne Tonachel!!!!

http://www.ovariancancerawareness.org/








Sunday, September 9, 2012

The Best Gifts to Give Cancer Patients-Part II

Here is a quick addition to my original post about "Best Gifts to Give Cancer Patients".

I recently had abdominal surgery and can personally attest to the fabulousness of the following products:


The Gopher!!!  (or any "pick me up" tool.  There are a lot of brands out there).


I found that bending down to pick things up post-operatively was the hardest thing for me to do.  Of course since it was the hardest thing to do, I kept dropping things like crazy!!!  Enter....The Gopher!!!  Yes, I realize it is one of those "Seen on TV" items, but it really is great and does work!!!

No abdominal surgery?  If you have a bad back or painful bone metastasis this is also a great tool to help you grab things!!





No Tie Shoe Laces
 

When I was trying to plan what items I would need post-operatively, I knew that I would need sneakers to help me walk outside during my recovery period.  I also knew that it would be tough tying my sneakers (due to bending and my abdominal incision).  I initially thought that backless sneakers would be the way to go.  But, they are just as expensive as regular sneakers and I wasn't crazy for the way they felt on my feet.  I still felt like I wanted the support in back of the sneaker.  I also didn't feel like ponying up $80-$100 for something I would only be wearing for 8 weeks.



Then, a FABULOUS and thoughtful friend (Thank you KG!!) gave me a pair of  "No Tie" sneaker laces.   GENIUS!!! 

They have all kinds of "No Tie" sneaker laces, but my kind friend gave me the "curly" kind.   Basically you put them on the first time while your feet are in the sneakers,  and then you pull them to tighten.  Et Voila!!  You are good to go and can just slip your feet in and out with only a minor occasional tweak.

"Sofsole No Tie" laces are what I received.  They are available on Amazon for $2.99.


The curly kind looks like an old phone cord.



This is kind of what they look like in your sneaker.  However, if you have an adult sneaker, there is less of the "curly" part on top.  If you have white laces they blend in more with your sneaker.
 
Okay yes,  you may not be winning "America's Next Top Model" while wearing them, but if you have trouble tying your sneakers, this is a comfortable and affordable option versus having to go out and buy a whole new pair of sneakers.




My favorite (which my friends have heard all about...ad nauseum!!)....


The Hammock Human Extractor!!!

My favorite place in the summer is my hammock in Maine.   Because of incisional pain, I knew that I would not be able to comfortably get in or get out of the hammock.  I stared at my hammock daily and longed to be in it!!!  Everyday I would try to gauge whether or not it would be possible to try getting in it. 

My fabulous brother took a cheap closet organizer we had (Target-under $10) and wrapped it around my birch tree.  He tied it in the front and fastened it in the back with a small bungee cord.  PERFECTION!!!  I was able to use it to help me get in and out of the hammock more easily.  I held it like a waterskiing rope, rocked back and forth with my feet and I was out!!  TOTALLY AWESOME!!!

 
 
So, not all cancer survivors may have this hammock dilemma, but if you know one who does....they will thank you for this device!!!!


Bottom line:  cancer survivors will be grateful for your thoughtfulness with any of these gifts.

Hope this helps!!

Friday, September 7, 2012

The Kindness of Strangers: Mercy Flight Indiana- Jim and Kay Butler







Six years ago we found out about a camp in Montana
(Camp Mak-A-Dream http://www.campdream.org/adult_retreats.html ) that was having a women's retreat just for ovarian cancer survivors.  It sounded like an incredible experience and we wanted our ovarian cancer support group members to be able to participate. 

Flying from Boston MA to Montana is not cheap.  At the time, the round trip airfare was around $500 to $650 per person.  Without going into specifics about the financial status of our support group members, I will just say, there were several of our group members who could not afford this at all. 

Some of our group members used frequent flier miles, so their airfare would be covered.  We applied for and received some grant funding to help supplement those who couldn't afford to pay part or all of the fee.  We received scholarships for several of our group members to cover the cost of the retreat itself.   We supplied some money for our group members from existing group funds.  After all of this wrangling and budgeting and dreaming, we still came up short.

I knew about some transportation organizations which helped transport cancer patients to treatment facilities for chemotherapy, radiation therapy or surgery.  But I had never heard of any group that might help us for something like this.  So, I called a few of the bigger organizations without any luck. 

Late one night I wrote a letter describing our situation, and just started emailing commercial airlines, transportation groups and networks of pilots who transport patients.  If they couldn't help, I asked them if they could point me in the direction of someone who might be able to help us in anyway.

Here's what I learned that night.  The people who run these organizations are the nicest and most helpful people on the planet.  I instantly started receiving emails from pilots, dispatchers, anyone connected with air travel of patients.  "I only fly small aircraft and would be unable to fly your ladies from Boston to Montana, but try contacting this person" etc, etc, etc.   By the next morning I had received multiple emails with kindly suggestions of who to try next, or just offering up support and the promise to pass along my letter.  AMAZING, KIND AND GENEROUS SOULS....THANK YOU!!!

Then I received an email that I will NEVER forget.  I don't remember the words verbatim, but the gist of the email was this:  "we do not have the resources to fly your group members from Boston to Montana on our own aircraft, but we would be pleased to offer you 2 commercial airline flight tickets so that 2 members of your group who could not afford to attend, can now attend the retreat".  What???????? UNBELIEVABLE.  AMAZING. GENEROUS.  INCREDIBLE.

Guess what?  This organization followed through and purchased 2 commercial air tickets for 2 of our ladies to go to the retreat.  Between the combination of some group members' ability to pay some of their own way, grant money, our own funds and now the generosity of these strangers, we could now afford to go to our retreat as a group.

We went to the retreat.  It was "a life changing experience" for most in our group.  We met about 60 or 70 other ovarian cancer survivors from around the country.  The women in our group became even closer.  They met other women from around the country who would become lifelong friends.  They received professional support and counseling from an onsite social worker at the camp.  They got to see a part of the country they never had seen before.  One group member who received a donated ticket had never been on a plane before, and had never been out of Massachusetts.

The organization that provided those 2 free airline tickets which made it possible for our whole group to attend together?  Mercy Flight Indiana.   The two people who read my letter and who were touched by our situation?  The two total strangers who reached out to a group of cancer survivors who they had never met?  Jim and Kay Butler.  Jim and Kay Butler.  Jim and Kay Butler.   I will never forget their names and this organization.

So, on those days when you start to feel that there is no kindness or generosity left in the world, please remember the kindness of these strangers.

If you are considering making a donation to a worthy and honest organization, please remember Mercy Flight Indiana.

THANK YOU JIM AND KAY BUTLER AND MERCY FLIGHT INDIANA!!!  6 years later we remain SO grateful to you for your inordinate generosity and kindness!!!


http://home.earthlink.net/~mercyflightindiana/index_files/Page295.htm



To make a donation or to find out more about how you can help Mercy Flight:

Mercy Flight7450 W. 1350
Demotte, IN, 46310
Phone (219) 297-3500 Hours: 8-8 Monday-Saturday
Fax: (219) 866-0586
Email:
Cheryl@MercyFlightIndiana.com
 
 



The beautiful and restorative Camp Mak-A-Dream in Montana.



Monday, September 3, 2012

September....Ovarian Cancer Awareness Month

                                                        




 
It's September.  It is Ovarian Cancer Awareness Month.   I hate ovarian cancer.  I  hate ovarian cancer.  I hate ovarian cancer.  Have I mentioned that I REALLY hate ovarian cancer???

Why?   I am the co-facilitator of an ovarian cancer support group in Boston.  Through this group, I have met THE most amazing women who have enriched my life beyond belief.  I love every single one of these ladies.  They are truly Goddesses.

Yes, I know that their collective experiences with ovarian cancer have made them into even more seriously righteous babes than they were before their diagnoses. Yes, I know that they are all fabulous and formidable.  But I do hate that they have ever had the words "you have ovarian cancer" darken their doorsteps, because I know what this has meant for them and for the people who love them.   They are the most kind, loving, wonderful, intelligent and FUN women on the planet and....this is their month.

So, today's blog entry is about the vague signs and symptoms of ovarian cancer and some ovarian happenings this month. There will be many more blog postings about ovarian cancer in the future.  Just wanted to get this out quickly, so you can check out some of these events.




http://www.layoutsparks.com/1/163648/teal-ribbon-ovarian-cancer.html


 


 #1:  The most important thing these ladies would want you to know?  Get to know the signs and symptoms of ovarian cancer.  These symptoms can be vague and easy to ignore by you and sometimes your doctors.    If you experience these symptoms, get them checked out and do it sooner rather than later.  If your doctor tries to pat you on the hand and tell you are okay, just because your symptoms are vague, BE YOUR OWN ADVOCATE AND DON'T TAKE NO FOR AN ANSWER.   Get fully checked out. 

These are from the NOCC website:  http://www.ovarian.org/symptoms.php  and more info from the Ovations for the Cure website:  http://www.ovationsforthecure.org/aware/aware.php
Ovarian Cancer National Alliance:  http://www.ovariancancer.org/about-ovarian-cancer/symptoms/

Symptoms of Ovarian Cancer:   

  • Pelvic or abdominal pain
  • Trouble eating or feeling full quickly
  • Feeling the need to urinate urgently or often
and/or...
  • Fatigue
  • Upset stomach or heartburn
  • Back pain
  • Pain during sex
  • Constipation or menstrual changes
If symptoms persist for more than two weeks, see your physician."
 
Here's one that I have heard from several different ladies.  "My pants started fitting tighter around the waist.  Every place else they fit the same.  My diet hadn't changed, my exercise regimen hadn't changed, but suddenly I felt bloated and my pants were not fitting the same".  GET THIS CHECKED OUT.

Although controversial and not the end all/be all workup, ask for a pelvic ultrasound, a CA125 blood test to be drawn and have that physician thoroughly address each of your symptoms.  And...make a nuisance of yourself if you still experience these symptoms even if nothing shows up initially.

Also, if you have a biopsy.....GET YOUR RESULTS.  Don't assume that all is well if you don't hear anything.  I cannot tell you how many times I have heard this issue come up.  You should know your pathology results within one week of your biopsy and keep calling your doctor's office until you get them.  Get a copy of the pathology report as well.






If you are an ovarian cancer survivor and you live in the state of Massachusetts, you should be grateful to a woman named Patricia Cronin.




I never met Patricia Cronin, but I love her.  I love her family, friends and the foundation who honors her.

The story goes something like this:  she had ovarian cancer and at the time of her treatment, there were no ovarian cancer support groups around.  So, she made her own!!!  Her many friends and family members became a support group for her.

In her memory, The M. Patricia Cronin Foundation has funded many ovarian cancer events, some research but most importantly it funds the ovarian or gynecological cancer support groups in many   hospitals throughout Massachusetts so that other ovarian cancer survivors have a place to connect with each other. 

One of my support group members once said, "my support group has changed my life". 

Thank you Patricia Cronin and your foundation for changing the lives of ovarian cancer survivors in the state of MA.  We are forever grateful!!!

http://www.patsfriends.com/patsstory/patsstory.asp


 




THE NOCC MA CHAPTER WALK:

National Ovarian Cancer Coalition
Massachusetts Chapter's 14th Annual
5K Run/Walk to
Break the Silence on Ovarian Cancer

Sunday, September 9, 2012 Registration 9am, Race Begins 10AM

http://nocc.kintera.org/faf/home/default.asp?ievent=1023801







Courtney Campbell of MA NOCC is seriously awesome and a major breath of fresh air over at MA NOCC.  Rock on Courtney!!!















Ovations for the Cure  

6th annual learning for living with ovarian cancer 2012 symposium


http://www.ovationsforthecure.org/events/events_up_lfl12.php

September 22, 2012
Four Seasons Hotel
Boston, MA
  • Registration and complimentary continental breakfast
    will begin at 8 a.m.
  • Lunch will be provided—free of charge.
  • Invitee participation is complimentary, and each invitee is allowed to bring a guest.
  • Parking is available at the Four Seasons Hotel
    for a reduced rate of $20.

                                                                  


If you can get past the rather annoying name,  HysterSisters there is a lot of helpful information on this site for the surgery side of things (hysterectomy etc).
 
 
http://www.hystersisters.com/vb2/view_cancer.htm



                                                                        


        

MA Ovarian Cancer License Plate Initiative
   
Are we freaking kidding here????  C'mon people.  You don't have to have been diagnosed with ovarian cancer to get an ovarian cancer awareness license plate.  If you know anyone with ovarian cancer, you should be ashamed of yourself if you have not "pre-ordered" your license plate. 

Margie Ferreira rocks and she needs you to sign up now!!!!!

http://www.massovariancancerplate.org/Mass_Ovarian_Cancer_Plate/MA_License_Plate.html

 
                                                                       

Survivors Teaching Students:  Saving Women's Lives 

Several of my ovarian cancer support group survivors have participated in this great program.
They tell their stories to medical students and nursing students with the hope that by hearing their symptoms/stories that these future health professionals will better serve their patients in the future.


http://www.ovariancancer.org/about-us/survivors-teaching-students/





Sunday, September 2, 2012

Hair Donation for Cancer Survivors' Wigs

HAIR  Donation!!!

We LOVE people who cut and donate their hair to benefit cancer survivors!!!  This is a truly kind and wonderful thing to do.  For kids and teens, I also love that it helps kids to think more globally about others in need and how they can help them.  Win, win, win!!!




Here's my favorite program:

Pantene Beautiful Lengths 

Why?  Because it benefits ADULT cancer patients.  Some of the other more famous hair donation charities donate only for kids wigs.  I LOVE the Pantene program because the hair donated goes for adult cancer survivors' wigs.



http://www.pantene.com/en-US/PanteneBeautifulLengths/Details/beautiful-lengths-about-the-program.aspx



"Beautiful Lengths is a partnership between Pantene and the American Cancer Society. The role of Pantene is to help women grow long, strong,* beautiful hair and provide the funds to turn this hair into free, real-hair wigs for women with cancer. So far, Pantene has donated 24,000 free real-hair wigs to the American Cancer Society’s wig banks, which distribute wigs to cancer patients across the country. To see if you are eligible to receive a free wig or if there are wigs available in your area, please call the American Cancer Society’s Wig Bank Line at 1-877-227-1596"

Here are the hair donation sites that make wigs for children/teens that have lost their hair due to cancer treatments or medical conditions that cause hair loss.


Hair Donation to Benefit Kids


Everyone knows about Locks of Love. You donate your hair and it goes to kids with a variety of medical illnesses that cause alopecia (baldness).  Not all of these donations go to kids with cancer.  Nothing wrong with that, but just so you know.  Hey, a bald head to a kid or teenager is traumatic no matter what the cause, right?

http://www.locksoflove.org/donate.html


Another great organization:  Wigs for Kids

Wigs for Kids even accepts gray hair (locks of love apparently not), but not color processed.
http://www.wigsforkids.org/index.php?option=com_content&view=article&id=34&Itemid=159


For our international clients!!!    Zichron Menachem
For children in Israel:  http://www.zichron.org/index.php?option=com_content&view=article&id=73&Itemid=257&lang=en


All of these sites have instructions for exactly how much hair you need to donate, condition of hair, etc.  Some also have info on where to go to get discounted or free haircuts if you are donating to their organization.

Thank you all for your big hearts and for donating to help cancer survivors!!!!!!!!!!!!!!

Saturday, September 1, 2012

The Patrick Dempsey Center for Cancer Hope and Healing + The Dempsey Challenge!

Dempsey.  Patrick Dempsey.  Oh yeah, I know what you are thinking. Patrick Dempsey as in Dr. McDreamy from Grey's Anatomy??? Yup. Okay, okay, okay... he is a total hottie, but he also happens to also be a great humanitarian, and a wonderful son.


Patrick Dempsey's mother is an ovarian cancer survivor. As you know, I have a special love in my heart for ovarian cancer survivors...but I digress. During the time of Mrs. Dempsey's initial treatment, her family identified that support and resources were either lacking or unaffordable for many cancer survivors in central Maine.

As a way of giving back to the community where he grew up, Patrick Dempsey provided the initial funding to start The Patrick Dempsey Center for Cancer Hope and Healing at Central Maine Medical Center. He continues to raise funds for the center every year through The Dempsey Challenge (a walk and biking fundraiser that takes place every October).

http://www.dempseychallenge.org/

Mary Dempsey
But there is more to the story. The Dempsey Center is apparently a family affair. The "heart" of the center is Mary Dempsey. She is a co-founder and co-creator of the center. Her title is assistant director and she is a very creative "hands on" head of the impressive volunteer program there.

There is also word on the street that Patrick and Mary's inspiration for all of this (their mom) is also an active member of The Dempsey Center.

http://www.dempseycenter.org/the-dempsey-center/


Here is the Dempsey Center mission statement:

"The mission of The Patrick Dempsey Center for Cancer Hope & Healing is to improve the quality of life for individuals, families, and communities impacted by cancer through support, education, integrative medicine, outreach and prevention. We strive to embrace the whole person using a collaborative and holistic approach." They succeed at this and so much more.


I had heard of the center and had been receiving their emails monthly, which told of what classes and services were available (all free of charge) for the cancer survivors/caregivers of Maine. Their work is very similar to what we do at the survivorship center at my hospital in Boston. Since I summer in Maine and have a deep love for Maine, I knew that I needed to check out the Dempsey Center in person.

My sister in law Susi (a cancer survivor) and I stopped in one day last year. When we walked in the front door of The Dempsey Center, we were graciously greeted with warmth and a hug from the very amazing and fabulous Michelle Small. Michelle is a Cancer Resource Specialist. This is my dream job and I was immediately jealous and wanted to hate her. No such luck. She is a total doll and extremely committed to the center and her patients.

She gave us a tour of the center and it was then and there that we were introduced to the world's greatest invention....THE PORT PROTECTOR!!!! (see my blog entry of last year: http://www.omgihavecancerwhatdoidonow.com/2012/05/port-cath-is-not-cruise-ship.html).

Michelle let us take one of them with us and we love her for that!!! Since then my sister in law Susi has made stacks of these as well as soft comfy hats. She makes them in FL and then sends them to my patients in Boston and to The Dempsey Center for their patients. We blatantly ripped off this great idea, and we thank and give full credit to The Dempsey Center for it!!!!



The Fabulous Michelle Small


But enough about THE AMAZING PORT PROTECTOR.....let's get back to The Dempsey Center and what it does...


The center provides free services to cancer survivors whether they have been treated at CMMC or not. Free massage, reiki, nutrition classes, exercise and wellness classes, support groups, one on one counseling, and a whole lot more are provided here. There is a free lending resource library with internet use for cancer patients and their families. Oncology social workers, financial counselors, resource specialists all are available to assist the survivor and their family members. SO many great services for anyone touched by cancer in Maine. Please see their website for a full description of their services.


This year we returned to the Dempsey Center. My sister in law had signed up as a volunteer to make hats, neck pillows, port protectors for the survivors. We were again greeted by Michelle, and this time by a human fireball of positive energy, Mary Dempsey. Hugs again greeted us along with a flurry of instructions for making these items for the patients. We participated in a volunteer sewing and neck pillow stuffing workshop.

The delightful leader of our sewing volunteer group that day was Mary Tucker a talented seamstress (Mainly Sewing of Lewiston) who gives of her time and considerable talents. She even enlisted her former marine husband Jerry to assist with cutting out fabric. A great team!!!








Bottom line: this is an awesome cancer survivorship center with a plethora of committed employees and volunteers.

If you are a cancer survivor (or a family member) in central Maine, do yourself a favor and check out the most excellent Dempsey Center.

If you are looking to donate to a worthwhile cause, please consider a donation to The Dempsey Challenge (or sponsor a rider or a walker).

Right now the Dempsey Center is a small haven located on the grounds of Central Maine Medical Center. In September 2012, they are moving to a larger and more beautiful place where all of the healing can take place.



My sister in law and brother post Dempsey Challenge 11 mile bike ride
My Dempsey Challenge bike ride (11 miles!!) number and those who I rode in honor of

It is true....the whole Dempsey family gets involved!