Have hope. Find hope. Take control.

This past week someone close to our family was diagnosed with cancer.  Where do you start?  How do you advise someone --- cancer is so big --- so many diagnoses, so many treatments, so many different types of insurance and lack of insurance.  Working for the American Cancer Society I would advise that they should call the 800-ACS-1234 (800-227-2345) number and our call center is equipped to handle all calls in all situations and can direct you to an answer that meets your needs at the time.  They are amazing.  I have visited the National Call Center 3 times in my 15 years to see the training, the Quitline and how many calls they handle 365 days / 24 hours a day.  The other ultimate resource for answers is www.cancer.org which has just been changed for easier navigation and updated --- these are resources for everyone, all the time and are so phenomenal -- you need to see it for yourself.  

But - when you actually have cancer, you don't really know what you need to know, what you need to look out for or what you need to ask.  So many people face this disease alone, without a true caregiver or someone to help and guide them along the way.  I am so fortunate with my background in the Society and having such an incredible supportive husband, colleagues, friends and family -- well I am set up for success in so many aspects.  But most are not.  Family will be there and try to help - and yet, they may not know where to start.  

Ask - what type of cancer, what is the diagnosis, the prognosis and be sure that you get the best care.  Find out what your insurance allows to be aware of the financial burden and be sure that you get all that is "covered" for your plan and you follow the guidelines that they have set so that you get the maximum benefit without the stress of trying to back track with rebuttals and more paperwork.  For someone who never gets sick this was huge for me to understand the process.  Call the insurance company, get to know your case worker and nurse if they assign you one.  Make sure that they are getting the information they need to be able to move forward, especially when you are trying to make this all happen fast.  Keep track of what is approved, denied, and paid.  Then keep track of any bills that may come in after.  This has been so hard for me -- I have a notebook and was real good at first, but keeping it all organized it tough.  Be sure that when you go to a doctor "out of plan" that it is approved and if possible have the letter in hand of what from that treatment is approved.  It takes the stress out later -- believe me.  

Bottom line -- this is my advice ...

1. Take control of your care.  Be sure you are happy with your doctor and feel that you are getting the right care and direction.  Hopefully have someone at your side to help you!

2. Get a second opinion.  Get the right diagnosis.  Get all the tests done early and wait for a diagnosis and not jump into a treatment plan.  Once they start it is more difficult to make any changes if at all possible. 

3. Clinical trials?  If there is a clinical trial available you need to get some phone calls in early to see if you are a candidate.  This needs to be decided right away.  Not all cases of cancer have clinical trials associated with them.  But if you are a candidate this is another source of HOPE.

4. Find and have hope.  Seek support and guidance.  Ask for help.  You are not alone.

AND

Celebrate you -- celebrate your friends and your family.  Live each day to the fullest. Care for others that care for you.  Be a friend. Celebrate your community.  Celebrate life.

Remember that every day is a blessing.  Remember those you may have lost to cancer or who have had influence on your life and your health.    

Fight Back.  Take charge of your health.  Make the first step today.  Be healthy.  Get started on an exercise plan  Make a difference in your community.  Relay For Life is a great support system...  there are more than 5000 events nationwide.  

Celebrate.

Remember.

Fight Back. 

I'm SHEDDING!

Each of us has the power to give life meaning, to make our time and our bodies 

and our words into instruments of love and hope.

 - Tom Head

Eek--- so did you ever want to know what it would feel like to lose your hair?  I didn't.  Never even crossed my mind.  And I am still partially in denial that I can go through this without crazy side effects...  and my long hair remains, and I brush it every day.  I love my long hair.  I love to curl it and get all pretty when we go out on "date nights" and when we have company or go out.  Hair is such a huge part of how you feel about yourself and I love going to the hairdresser.  It is actually kind of crazy, how I really searched for a hairdresser here in Western Mass after leaving New Hampshire, because I loved Amber so much.  She made me feel like a queen every time.  I didn't find that here for a while, until I went to Tranquility Day Spa in Florence, MA --- Maria is her name --- she is amazing and I really like going to her for a cut.  I feel like a million bucks!

So back to shedding --- last night it started, long strands of my hair started coming out of my head after my shower.  It is really horrible and sad.  Judy said it could be painful according to others she has talked too.  Well it is.  Psychologically painful that is.  I brush and it comes out, strands at a time...  I kept thinking I need to go to get a hair cut this week and cut 8 inches to be able to send to Pantene Great Lengths program where they make wigs for kids going through chemotherapy.  I would really like to do that --- 8 inches is a lot, but it is just awful to be pulling out long strands of hair and feeling them on my back and picking them up all over.  UGH.  Oakley is infamous for the immense amounts of "hair clouds" of yellow lab hair he leaves all over the house.  We could surely make another dog with all that hair.  Now its me.... my hair..... eeks.

So - off to the hairdresser.  Cheryl Nina said she may be able to help and give me an "emergency cut" --- which is what I need right now.  Hope that wig comes in soon -- otherwise it is going to be a hat if I see any spots.  :(

The other thing that is really bothering me right now is my taste buds.  My mouth feels burnt.  Nothing really tastes that good.  I eat for fuel.  I have lost more than 6 pounds to date since diagnosis.  I can't drink wine or any kind of alcohol (I keep trying and it tastes so horrible and gives me HUGE heartburn and a rotting feeling in my gut).  Sad.  I am such a wino (love good wine, wine tastings and visiting vineyards).   My friends are helping and are having drinks for me.  Comment on your favorite wine if you can!  :)

I can't eat anything with pepper, or anything too hot (coffee has to cool down - but I can still drink coffee).  No red onions or fresh garlic.  ALL of it too spicy.  So - I starve.  Kidding.  I have been drinking protein shakes and bread and a very plain, bland diet.  Boring.  Oh well.  Just thought I would share.  :)

The good thing is that I am still running and running pretty strong (maybe not my best, but not so bad).  I am trying to stay on the Training Peaks plan and ran 18 miles today.  I am a little tired, but boy oh boy it felt great to get it in!  I have put my site out there hoping people will sponsor me and make a donation to ACS for my Determination efforts in Chicago.  The date is 10/10/10 ---- which is Schuyler's birthday -- and really very cool date for the marathon this year.  Kristin, who I mentioned earlier has a 10,000 goal.  Not sure I can do that, but maybe $5000 and that will make my Determination donations in the past 1.5 years up to 10K?  Please sponsor me --- any donation counts and is truly appreciated!  :)

Cara Turano (mentioned earlier) from Boston Determination is going to pace me (she can be with me in the Elite corral --- yes I have an elite number because of my past times in the marathon this year -- very cool) and we are going in costume!  I have asked Laurie, my sister to make us Batgirl and Wonder Woman costumes.  It will be a hoot!  It really keeps me motivated and so happy to run.  I ran 2 towns, 10 streets, and listened to 20 songs....  The bike path was full of active people enjoying the day.  :)

Hope you all are enjoying this weekend!  It is beautiful here.  Get out there and enjoy life!  Every minute counts! Say a prayer for me and my family as well as anyone else you know going through a life changing illness --- it isn't always easy.  God is truly watching over all of us.  Photo below was taken in Northampton.

Thanks for stopping by.  Please leave a note if you can!

(Added this below on Monday morning 8/2) 

On the way home last night (Sunday) - Cheryl Nina from Cheryl Nina Salon was so great to have us stop by so she could cut my hair.  We are close to the family as they are Samantha and Stephen's aunt & uncle - and Schuyler loves to hang out with Austin (11) their son who is an amazing soccer player.  She has the cutest little spot in her home for her special clients, and I felt very special with Steve & Schuyler there as I got my hair cut.  I asked her what 8 inches off would be so I could send the hair to Pantene Great Lengths.  She showed me and then we made the plunge.  

Wow - do I look different.  It is hard to see in these photos, but I haven't had my hair short like this in a very long time.  It has been quite long for more than 3 years.  Steve loves it long.....  Anyway, she gave me a stylish cut, just the way she would like her own hair and I think it looks great - so I am sharing a couple pics here on the blog.  :)  yay!  Now when I shed, it will be short hair and hopefully it won't get snarly and come out in handfuls for a little while longer.  :)

Hope you like it too!

Getting Wigged Out - Part 2

We made the appointment for the Pink Petal in South Hadley - home of Mt. Holyoke College - an amazing and beautiful town here in Western Mass, and right around the corner from our house.  Donna was recommended highly by Cheryl Nina Salon (aunt to Stephen & Samantha) and also by Dr. Mullally's office.  You drive up to this shop and it looks like a flower shop --- so beautiful and quaint.  Very "New England".  : )

I was definitely very nervous, this part of the the whole "cancer" thing doesn't make me feel very comfortable, as it is very evident that you have cancer and in chemo when you lose your hair.  Scary.  And while I still have my long hair (longer than it has been in a long time...) I am still in "denial".  Doesn't seem possible.  And when I feel good, I have a hard time remembering that yes, I have cancer, and I am in treatment.  Crazy.

My husband Steve is so incredibly supportive, he has been tight - right by my side every inch of the way.  His undying love is so strong, seems stronger now than ever, if I thought that were possible.... but it is true.  A true caregiver, he gives the strongest meaning to the word.  He holds me, monitors my symptoms, listens to my pains, prays with me, heals with me, loves me so so much.  This experience has brought us even closer than ever - he is an amazing man - dedicated to me each and every moment.  I start with that because I think he really wants me to continue to feel beautiful and like "myself" and knows that with hair that just may be possible.  :)  He looked into the wig opportunity right from the beginning by asking Cheryl and we were secure in the fact that Donna at the Pink Petal was it!  He held my hand as we walked up the steps onto the porch to the shop that was a renovated old home, and gave me a squeeze.  "I know your nervous, it's ok, it's all going to be ok..."  he said with his usual warm and loving smile.

The shop was packed!  Crazy.  There were about 5 women inside shopping --- wigs, clothes, prosthesis, "Save the Tatas tshirts, jewelry... and more.  What a cool shop.  I felt like I had been invited into a "club" - a club of cancer survivors, and most evident breast cancer survivors.  Working for the American Cancer Society, breast cancer is the most common cancer for women, women fighting breast cancer are very passionate and that passion comes out in events like Making Strides Against Breast Cancer - the ACS walk for breast cancer and others like Race for a Cure for Susan Koeman, etc.  That passion to fight breast cancer because it hits so many of our loved ones is just so powerful!  So there we were in the room - I had my 10 am appointment and I was just a little uncomfortable, but looked around at the wigs on the maniquin heads and the scarves and hats.  Donna was behind the counter, a very sweet woman with a really welcoming smile.  She said hello and the other lady got all my information and took my "hair prothesis" prescription.  You can buy one wig and your health insurance will reimburse you up to a certain amount.  Good to know - glad I have insurance, because the wigs range from about $300-900.

Donna brought us into one of her wig rooms -- about 5 shelves line the walls with approximately 30 wigs all around me.  A big mirror and chair as if you are in the beauty salon.  She talks to us about wigs, how they are made and the different brands and a little timeline of what most people experience with hair loss.  I brought up my research from Kathy  -- the tied cap, something to look natural, looking at real hair wigs, etc.

Looking around at the styles and the colors --- i just know that blonde would not look good with my skin coloring, but it was fun to try them on anyway -- all the wigs are on display and they order one after measuring your skull to fit you custom.  We looked at some of the long hair wigs and some short hair, a little red highlights and even some blondes!  :)  Steve laughed, Donna smiled, I thought this was just so crazy -- seeing my head with this odd hair on top --- just weird.  But fun in its own crazy way.  We liked a few of them actually and then Donna showed us this new technology that is more heat resistant now -- a new style just out.  The hair color I tried on was a blonde highlighted light brown.  It was beautiful.  Looked like my style hair and Steve was looking at me thinking and jokingly says "Hmmm -- Hey you wanna go out?  My wife may get mad, but you are gorgeous!" :)
Donna went out and got a brunette of the same long hair style and truly it looked like my hair.  I really liked it. And Steve thought we should get the blonde too --- just for fun --- and so he can go out on a date with that "blonde"  :)

Success!  We looked at the real hair wigs (they are much more expensive and more to upkeep as they are real) = $800 plus. but decided since this is a temporary hair loss from the cancer and hopefully by March I will have some hair back, I was going to go with the synthetic new technology hair -- it looked good and made me feel beautiful.  For running I will wear a cap, a hat hopefully something so it doesn't fly off....  but the wig will be good.  And the blonde one will be fun.

Jeff & Judy think I should go back to the shop when the wig comes in and get my photo with various wigs on my head and people can vote on what they think looks good on me.  :)  Pretty funny, crazy Relay friends I have ---- gotta love them - they are trying to make this fun for me too.

The wig should be in soon - Donna said it takes about 5 days.  Her shop is just awesome, people in there, the customers and the sales lady are so friendly and warm.  So glad we went to the Pink Petal..   More to come on this part of the story....  stay tuned.


Oh ya - side note --- Donna is the Look Good Feel Better coordinator in the area, volunteering for the American Cancer Society.

The Look Good...Feel Better program is a community-based, free, national service. It teaches female cancer patients beauty tips to look better and feel good about how they look during chemotherapy and radiation treatments.

 I asked her if she would show me how to wear scarves and all that the program has to offer for cancer patients and of course she will when I come in again.  Very cool.

I didn't bring my camera in the shop with me that day and will have to go back as I really want to share it with you all.  Such a great place - inviting, warm and welcoming place --- great healing environment and Donna's smile really tops it off.  :)


Me and My "Caregiver"

Hope & Inspiration: The Wall of Hope and the Healing Garden

Photo of the picture of Lynne Graziano-Morin with her Dr Gebhart - the doc she trusts!  :)  Lynne has been a great friend and true resource for me.  I think you can read her story below -- it in itself is a true story of hope and faith in surviving cancer.  I feel truly fortunate to have her as a friend and someone I trust to help me get this diagnosis as quick as possible.  She directed us to Diane Smith the head nurse at Mass General Cancer Center to get our intial appointment with Dr. Hochberg that we had to cancel for insurance reasons.  and then was also just able to help us quickly navigate the system and get real feedback -- and she always answers my phone call.  :)

The Healing Garden on the ninth floor outside Children's Oncology area.  A calm and beautiful spot overlooking the city of Boston and the Charles River

It's all about HOPE - from Children's Oncology area at Mass General

As we walked around to the wig shop and talked to the lady there who was so nice - preparing for the months to come....  we passed these felt "quilt" squares and these words in particular were my favorite of the more than 40 hanging from the ceiling.  The words alone give strength, hope and share such love.  :)  

(Side note:  These pics were taken with Steve's new Iphone.... not bad eh?)  :)