A Community Dances In The Rain To Fight Hodgkin’s Lymphoma

Joey and Oliver after latest round of chemo. He is due again October 23.

My sister Andrea is part Mary Poppins,  part MacGyver with Moves Like Jaggar.  She is organized, energized, a true Virgo and I am proud to call her my little sister.  I’m not featuring Team Joey in my first Fundraiser Spotlight because my sister Andrea has incriminating photos: I’m featuring Team Joey because my sister, Andrea Brookshore, is one of Joey’s Angels.

A Community Comes Together 
Joey’s Angels is the team behind the scenes, organizing the activities of Team Joey;   a small community in upstate New York, that has come together to raise funds and help eleven year-old Joey’s family pay for his life saving medication and expenses.   Joey’s Angels organize events, make phone calls, inventory donations and keep Team Joey running like a well oiled machine of love and support to Joey’s family.  Joey’s Angels know the well being of his family is just as important as his cancer treatment.

Falling Through the Cracks
In addition to Joey’s diagnosis, his parents  Holly and Ben, were devastated to learn their insurance only covers $5,000.00 of prescriptions each month.   Joey  is in stage 2A of Hodgkin’s Lymphoma.  That means Joey has “involvement of two or more lymph node regions.” (National Cancer Institute).   The urgency for treatment is obvious, but at $3,500.00 per dose, Joey’s chemo is the tip of the iceberg.   Joey’s family has to travel three hours one-way for treatment, while maintaining two incomes to put food on the table and keep their house and manage a “gift with purchase”: The overwhelming worry of loosing a child and brother to cancer.

Joey’s family is one of many who fall through the cracks.  They don’t qualify for Medicaid because their income is to high; and they certainly do not have the cash to cover the expense of paying for treatment up front.  That’s right; payment for treatment is required up front.  They don’t get billed for chemo shots and  Joey doesn’t receive his life saving treatment before payment is made in full.  Luckily, Joey and his family have a fleet of angels.

Joey’s Angels, have taken the Team Joey Facebook Community, from zero to 486 likes as of 10/18/2012 at 9:29pm- less than three weeks after launching.    But this Facebook page is about more than just getting “likes”.   This page is filled with the pictures and prayers of a small community working hard to lighten the load of one family.   There are pictures of  the  recent can drive, items for raffle and updates about Joey’s progress.

What strikes me most about this community is watching  human beings at their best during the worst of times.  There is nothing fun about watching a family cope with cancer, but I see a community  “Dancing in the rain.”  And this Saturday, dancing is exactly what will happen.

This Saturday, October 20, Team Joey is dancing in a Zumba Fundraiser  for Joey’s treatment and family’s expenses.   There is nothing more painful to a parent than the helplessness of watching your own child fight for his life.  But because Ben, Holly,  Hanna and Joey have the support of Team Joey, I have unyielding hope this family will prevail intact.  The load of things like expenses will be lightened by the help of their community, giving the family time to focus on each other, where their strength is needed most.

Holly, Joey’s mom, is a Zumba instructor and while she is at home with Joey and my nephew Oliver, her teaching partner, Dani will be leading over 300 people in a Zumba class with Holly’s husband Ben and their daughter Hannah.  In this way, the community  will be putting their minds and bodies in the game, if only for 90 minutes.  Nothing is more powerful than souls coming together in dance.  Humans have been doing it for millennia for a reason.  It’s not just 90 minutes of dancing; it’s 90 minutes of empowerment that will strengthen the bond of this community.   There will still be still more work to do when the music stops, but for 90 minutes, more than three hundred people at a school auditorium in Upstate New York, will cry out in one loud voice “No!” to the cancer in Joey’s body.    Dancing  in the rain of tears, prayers and love.

You and I may be reading about Team Joey  a few thousand miles  from the Zumba Fundraiser this Saturday, but we can help through the power of social networking.  Share this story.   If 500 people read this post and 100 of them can kick in $3.00 each, that’s $300.00.  Imagine what could happen if 500 people share Team Joey’s page.  There is no such thing as a small act of kindness.  Visit and “like” Team Joey’s FaceBook page and see how you can make a big difference with a small donation. If you live nearby, you can participate in the Zumba Fundraiser, upcoming spaghetti dinner, raffles and events in the works.  Joey’s fight has just begun.    Please join Team Joey and  make a difference.

About Hodgkin’s Lymphoma and the Possibilities of Successful Treatment
Hodgkin’s Lymphoma is one type of cancer with many stages and types.  It can occur in children and adults, which makes Hodgkin’s Lymphoma is an equal opportunity destroyer.  Follow the links to learn more.  Cancer research has created the possiblity for treatment of other diseases;  such as immunosuppresants for autoimmune diseases, better treatment of medication side effects and complications, patient care and caregiver education in not just cancer, but all illnesses.  Progress in cancer research helps all, and we are in this together.  Cancer gets a lot of publicity, but it ‘s not enough because people still die of cancer. Now that there is treatment to put cancer in remission,  large amounts of money to pay for life-saving treatment is now needed because patients like Joey, are  falling through the cracks.   Join us and support the fight for Joey’s life.  Thank you.
Links to Join Team Joey &  Learn More About Pediatric Hodgkin’s Lymphoma

About Childhood Hodgkin’s Lymphoma, treatment and prognosis: National Cancer Institute http://www.cancer.gov/cancertopics/pdq/treatment/childhodgkins/Patient/page1

Treatment for Hodgkin’s Lymphoma: Livestrong
http://www.livestrong.com/article/214333-what-are-the-treatments-for-hodgkins-lymphoma/?utm_source=popslideshow&utm_medium=a1 

When your child has cancer: The American Cancer Society
http://www.cancer.org/treatment/childrenandcancer/whenyourchildhascancer/index 

A unique resource for cancer: Cancer 101
http://www.cancer101.org 

Our 20 Year Anniversary. Yes, Me and Raynaud’s: Here’s some Ideas From an Old Couple.

Yes, it’s been 20 with Raynaud’s. Here’s a timeline list.

1992. My doctors didn’t believe me.

1993. My Doctors were not sure what the hell it was.

1994. Congratulations! It’s Scleroderma! CREST is not just my favorite toothpaste anymore.

2008. Viva Viagra!

2012. Happy 20th to me and my  Raynaud’s symptoms! (Do I register at Macy’s or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud’s is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn’t matter what climate you live in, just take precautions and be plan to be cold all the time. It’s a real timesaver.

2. Tune out people who tell you just because they aren’t cold it means you are just “oversensitive”, because they are uninformed and believe they are helpful.  Remember THEY believe they are helping you.  I know it’s difficult, but I have to tell you receiving stupid advise from well meaning people becomes easier with time.  The sooner you let it roll off of you, the better you will feel.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud’s attack. Bringing having  a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are covered in comfy socks, my core temperature stays consistent.

5. If I have a Raynaud’s attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else’s (They are usually warmer)

6. When having a Raynaud’s attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages are helpful for me .  Scleroderma is not a one-size-fits-all disease and always ask your doctor f massage is right for you .  Massages can be expensive.  I have found Massage Envy very affordable and their therapists are well trained. Never be afraid to ask about a therapist’s experience. ALWAYS observe their cleanliness practices and don’t be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a “discount”  place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn’t always mean they are consistent with cleanliness practices either. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don’t be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage helps quite a bit on my hands and feet,but before you even get a massage anywhere on your body ask your doctor first.  Oh and during a pedicure, If someone ever pulls out a razor and tries to “trim your calluses” with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only person that should ever use a razor to trim back calluses.  Your podiatrist can show you or a loved one how to do it at home.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven’t tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran’s healthcare, which is even better.) and a private OT chain treated me like a cash cow. It wasn’t the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.  The right occupational therapist will teach you many useful exercises and prevention tips.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. The very best thing that helps keep my Raynaud’s in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son’s not here, my dogs will at least keep me company. They look at me like I’m crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don’t be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.  (Good God!  James Brown’s Celebrity Hot Tub Party)

16. Moisturize.  For me, Kama Sutra Oil* is the only thing that keeps my the skin on my hands and from cracking. The skin on my fingers is scar tissue and  their Sweet Almond Oil seems the most effective for me.  It’s not just for hot monkey love.

So those are my tips.  If you have any to add, please leave them in the comments section because my way is not the only way.  Living with Scleroderma isn’t easy, but it can be done.  It takes a lot of patience, some sedatives and some good old fashioned stubbornness, but it can be done.  You may have Scleroderma, but Scleroderma does not have you.

*Update, June 3, 2014:  I have found in addition to Kama Sutra Sweet Almond oil;  Cetaphil, Amore D’Or or Tarte D’Amande by Votre Vu, or a good “dry” body oil to be effective moisturizers as well.