The Mutant Club Expands

In support of Nancy's fight with Cancer and for all of us affected by cancer, I wanted to share a bit of my story about HBOC- or Hereditary Breast and Ovarian Cancer.

After our Smith family had genetic testing for hereditary breast and ovarian cancer, we discovered that two of the four stunning Smith sisters had inherited the mutant gene from the Boococks and two hadn't. I, Andi, am the other mutant sister in what Nancy and I call "The Mutant Club." Mom and Grammy Boocock are also members of long standing. Yesterday, one of my children was identified as the newest mutant club member.

After my genetic testing, I found I had inherited the same deleterious mutant gene on chromosome 13 as my mother, grandmother and Nancy. Now, we know at least one of my 3 kids also has this mutation. We all are Braca 2 positive. We have inherited a high risk for breast and ovarian cancer.

Nancy's plea for support has inspired me to share this information.

Yesterday, while my child, and I were discussing the positive genetic results with a genetic counsellor and oncologist, we opined that in years to come there may be simple blood test to proactively detect cancer. I was then told of a current research study at Maine Medical to study a protein they think may be just such a marker for proactive identification of breast cancer or ovarian cancer "carriers". Being Braca 2 positive, I was eligible to participate in this study, so I had a blood draw for this research study after our meeting.

This message is my round about way of saying how I second Nancy's plea for support of the Relay for Life and the American Cancer Society. In the future research may stop this disease from being inherited and passed on, or may identify it by a routine blood test before it can harm anyone.

I think knowledge is power. Knowing we are Braca 2 positive, My child and I can now be proactive in our fight against cancer. My child was told they can now even do genetic testing on embryos to determine if they have inherited the Braca 2 gene.

I had to weigh my risks and received great counselling in deciding how I would be proactive about my inherited cancer risk. In January 2010, at age 59, I had my first surgery. I had a laparasopic bilateral salpingo oopherectomy (BSO), or the removal of my ovaries and tubes. It was a cinch. They were benign and now my chance of getting ovarian cancer is drastically reduced. The BSO is a "no brainer" proactive surgery recommended by all the MDs talked to as the best preventative measure for Braca 2 positive people who have already had their children.

On April 9, 2010, I am having a prophylactic bilateral mastectomy with reconstruction. Being Braca 2 positive, my risk of getting breast cancer by age 70 is up to 87%. I have seen first hand the suffering of Nancy and others with Cancer and hope to not share that horrible fight. I'm a chicken, so I would rather loose my famous "Boocock Boobs". On the positive side, at 60, I will have the breasts of a 19 year old.

So my request is twofold: Support Nancy's fight and the American Cancer Society; and, Boococks; get HBOC testing! Knowledge is power.

An Appeal to All Who Read This Blog

In light of the recent passing of Cheryl and Hank's dear friend, Bob Dalton, and "our own" dear Hilda, as well as the countless others whose live has been touched by the terrible disease of cancer, I ask you all to consider supporting me in this year's Relay for Life.

My Reason to Relay

I relay for:

* Myself

* For my dear friend Deb Reid who fought so bravely

* For Mom-Alice Smith and my Dad Frederick Smith

* For Dale Shaw

* For Lillian Boocock

* For Grampa Smith

* For Uncle Arthur Smith

* For Louise Doty

* For Bob Dalton

*For my cousin, Lynne

* For Hilda Richie

* For all those who have had their life or that of a loved one affected by this evil disease

I Relay because I want to see an end to cancer during my lifetime. Relay gives me the unique opportunity to celebrate the lives of those who have battled cancer, remember loved ones lost, and support the American Cancer Society’s lifesaving mission by fighting back against a disease that has already taken too much.


Please support my efforts to fight back against cancer by making a donation or joining my Relay For Life® team. We will relay Saturday June 26-27 from 6 pm until 6 am at Windham High School, in the brand new Relay for Life of the Sebago Lakes region!


Your efforts will help the American Cancer Society fund groundbreaking cancer research, provide up-to-date cancer information, advocate for all people to have access to screening and treatment, and offer free programs and services to improve the quality of life for people facing cancer. By being a part of Relay, we are joining a worldwide movement to help defeat cancer for future generation



Please join me in my fight against cancer!

Nancy

My Page:
http://main.acsevents.org/goto/NancyTufts

Remembering a friend

In Memory of Bob Dalton

March 11, 1948 - March 19, 2010

Kennebunk, Maine

The Gourmet Group will never be the same without you, Bob...
Kampai!

The Beast is Back

Yesterday I had my monthly checkup to go over my CT scan results with my oncologist, Laurie Small. There is no fun way to share the results--it appears that there are some spots of cancer which appeared on this scan, Tuesday. My CA125 has also risen to 65 (anything below 35 is considered normal). So, I am now officially off the drug trial that I was on, and will be going back into treatment for this recurrence. I will be going on Doxil for my chemo. This will mean monthly infusions, and is supposed to be a relatively well tolerated drug. There should be no more hair loss (good thing, I only have about 10 left) and the other side effects are the typical--nausea and fatigue. The worst side effect is skin rashes on the trunk and arms and legs, and something called PPE, which is a severe rash and skin peeling (like a bad sunburn) which occurs on the palms of the hands and soles of the feet. This does not mean that I will get all the side effects, but those are the most common ones. Before I begin treatment, she is referring me to a gynecological urologist. The Dr. who read the CT scan also found what he thought was scar tissue on my urethra (I know that is misspelled--it is the tube from the kidney to the bladder). Since this is not her specialty, she wants me to see a specialist so that if there is any treatment needed for that, it can be done before the chemo begins. IF there is significant scar tissue, they might decide to put a stent in the tube to prevent any further blockage. Currently there are not problems with my kidney function numbers, but she just feels this should be checked out before the Doxil, so that if there is surgery needed, it will happen before the chemo. She would also like me to consider having a port surgically implanted to make accessing a vein easier for chemo and blood draws. This is a catheter place directly into an artery below the collarbone, so there is always a place to access for chemo infusions or blood work. About half of the patients have them. So--all in all not the greatest news, lots to digest and learn about. I have had a good run of remission, and Laurie feels that I will be able to achieve another remission with this treatment. I just wanted everyone who reads this to have the information as I received it. I'm not sure that anyone but Cheryl even reads this anymore, and Cheryl already knows because she stopped by right after I got home from my appointment. Wish I could think of some cute picture to post with this or some clever retort to end this with, but right now I can't--so I'll just leave it with cancer sucks--please support the American Cancer Society and Relay for Life--Nancy

Black Mountain 2010

What a great February vacation! Hank and I spent the week skiing and relaxing at Whitney's Inn on Black Mountain, NH with Rob and Taka, Robert and Brian, and Kit and Erin. Taka had never skiied before and by the end of the week he was going up the lift by himself and skiing down. Robert and Brian started skiing at Black two years ago and have gotten really good...black diamond good. On Saturday, Robert even entered a ski race and did really well. Nancy's son, Kit is on the ski patrol at Black. He has worked very hard to become certified as a member of the US ski patrol and we're all very proud of him. Kit learned to ski with us at Black, too, when we had our camp...lots of great memories at this mountain!

Taka just turned 6...is he cute or what?

"Grampy" loved skiing with his grandsons...

Rob & Taka in the lodge...

Taka and his ski instructor, Elizabeth...

Elizabeth takes Taka up on the Platter Pull ("Platypus") lift...his first time up...

After a few times with Elizabeth, Taka went up all by himself!

Cheryl, Hank, Brian, Robert, Rob & Taka...

Kit, Robert & Brian at the triple chair...

Robert, Erin, Kit and Brian...

Kit working ski patrol at Black...

Dreamgirls

"The Dreamgirls" (the female half of our Gourmet group) took the Downeaster to Boston for the weekend for a show and some "retail therapy". I got on the train in Portland and my job was to save four seats together until the other three "girls" boarded in Wells. Who knew that the "soup Nazi" now works for Amtrak??? Trying to save seats on a sold-out train was more stress than going to work! I was lucky: I was not thrown off the train. I did manage to snap this photo of our "friendly" conductor as Alison boarded...

and here we are...Jo, Alison, me, and Claudia...finally on our way to Boston...

We saw "Dreamgirls" at the Colonial Theatre Saturday afternoon. Season 7 American Idol finalist, Syesha Mercado, played the role of Deena. It was fantastic!

Saturday night we had dinner at "Cantina Italiana" in the North End...

and ended the evening with Italian cookies at Mike's pastries.

On Sunday, we walked 'til our feet ached, shopped 'til we almost dropped, and finally dragged our bags onto the 5:00 p.m. Downeater for the trip home to Maine. Great getaway!!!

Fix You

For those of you who missed "Young at Heart", here are some clips:



And finally, Fred Knittle, an original member of the chorus, sings Coldplay's "Fix You". He can't breathe on his own and is on oxy­gen while singing. Fred, a machine gunner in WWII, passed away on January 1, 2009.


Young At Heart - Fix You

June Marie Martinez-Roldan MySpace Video

pink glove boogie

This video features more than 200 doctors, nurses, lab technicians, administrators and kitchen and janitorial staff from the Providence St. Vincent Medical Center in Portland, Ore. In the video, they all wear pink latex gloves, and they dance and sing to Jay Sean’s R&B song “Down.”

The video was shot at the hospital to help raise money in the fight against breast cancer. A portion of sales from the pink gloves will provide mammograms for uninsured women.
Enjoy!

Young at Heart

The most amazing documentary is currently playing on your local PBS station. It's called "Young at Heart" and, although it premiered January 12th, you can still find it rerunning for a few more days under the heading "Independent Lens" on your TV directory. I don't know why I was so emotionally affected by this film but I was. I laughed and cried as the film followed the lives of a group of chorus members from Northampton, Mass. who are all in their 80's and 90's as they prepared for a big concert. The grit of these people was an inspiration, yet they showed such humor and positive energy to perform in the face of serious health issues. This one was right up there with the Susan Boyle performance of "I Dreamed a Dream" for me. Here are some links with more photos and biographies as well as PBS viewing times for your area:

http://www.pbs.org/independentlens/young-at-heart/

http://www.youngatheartchorus.com/index.php

I went on Amazon and found the DVD of this documentary. I ordered two...one to keep and one to share with family and friends. If you would like to order one, here is the link:
http://www.amazon.com/Young-Heart-Joe-Benoit/dp/B001BBAVKQ/ref=sr_1_1?ie=UTF8&s=dvd&qid=1263677042&sr=8-1

The DVD is only $9.99 and I wish I had the money to purchase one for every member of the "Greatest Generation" I know and for every nursing home and senior center in the area. It would make a wonderful gift!
I hope you get to watch "Young at Heart " and share this amazing story with others.

Cheaper by the Dozen

Our grandson, Brian Lawson, auditioned in November for his first "professional" theatre role in Cheaper By the Dozen at the Portland Players and got it! He will be playing Joe Scales, a flamboyently dressed cheerleader, who is one of Anne Gilbreth's "suitors".
Opening night is this Friday, January 15th and the play runs through January 31st. Showtimes are Friday and Saturday evenings at 8:00 p.m. and Sunday afternoons at 2:30 p.m. Tickets are $20.00 for adults, $18.00 for Seniors and $15.00 for students. The box office phone number is 799-7337 to reserve tickets.
Portland Players is located at 420 Cottage Rd. in South Portland.
Break a leg, Brian!!!

Mom is home!

Mom was discharged from the hospital on Sunday afternoon and is glad to be home with Tabby.

Welcome home, Mom!

Back to MMC

Mom is back in the hospital. She was admitted at about 1 a.m. Wednesday morning with shortness of breath. She is resting comfortably after a couple of difficult nights at home. We are not sure how long the doctor will keep her at MMC but we are glad that she is getting some rest. She was home almost three
weeks after her last hospitalization and maybe her body just wasn't quite ready to resume all the day to day activites being home involved. She is in room 361 and her bedside phone # is 662-7561. Hopefully, this will be a short stay...just until she gets her medications regulated and more of her strength back.

So... I think I have already broken yet another of my New Year's resolutions...the one about spending as much time having fun as visiting hospitals and doctor's offices. By the way, only two of our esteemed blog readers have added their resolutions to my list on the previous blog - Roger and Kathy -
I'm still waiting for yours...

Aunt Ann called tonight to see how Mom is. It was great talking with her. I remember that when I was about 12, I thought Aunt Ann was so cool because she wore red shoes and drove a VW bug! (Don't worry, Aunt Ann...I still think you're cool!)

By the way, Happy Belated Birthday, Maureen...I had forgotten that you and Grampa Smith shared a birthday on January 6th. Hope it was a good one...

Happy Birthday, Grampa Smith!

Happy 110th Birthday, Grampa Smith...if there's vaudeville in heaven, we know you're still doing the old soft shoe... love you forever.

Arthur W. Smith 1900 - 1977

What's your resolution?

Thought we'd have some fun to start off the New Year on the blog...how about sharing a few of our (probably soon-to -be -broken) New Year's resolutions! I'll start with a few of mine:

In the "tried and true" category:

1. Lose weight

2. Grow my hair

3. Quit smoking (already broken)

4. Learn Japanese

5. Be nice

In the "new this year"category:

1. Make my "bucket list" so that I'll have time before I'm too old to do anything on it

2. Stop making so many lists (already broken)

3. Overcome my fear of colonoscopies

4. Make the blog even more exciting (???)

5. Spend at least as many minutes doing fun things as I spend in hospitals and doctor's offices

6. Have another "cousins weekend" in 2010

7. Learn all the words to the "Maine Counties" song

8. Drink more Margaritas

9. Be nice

Now it's YOUR turn...just click the "Comment" button and have at it...I triple dog dare you!!!

Happy Holidays! (Finally!)

Well it's New Years Eve and I've been meaning to write this post since Christmas! I don't know where the week has gone since Christmas-but I think that it took the whole week for me to recover and at least two days to put it all away! We had a busy, holiday and of course, received the best gift of the season in that Mom was home from rehab. in time for the holiday! She's recovering at home and getting stronger every day-of course not fast enough for her. She says she's never come home from the hospital feeling so exhausted, but then again she's never been sick for so long. She went to the hospital November 9-home December 16-that's a long time. She had a followup doctor's appointment Wednesday and checked out well. The doctor said for each day she was hospitalized it will probably take a week to regain the strength she lost, so she will probably be all winter getting back up to speed, but at least she's on her way! We are all very proud of the strength and grit she's shown! Go Mom!
We had Christmas all together at our house. It was crazy, loud, chaotic and fun! We decided not to try to have a sit down dinner-way to much for my house, so we all made a number of dishes and had a few crock pots, so people could just eat whatever when they were hungry. Tons of food-meat and cheese platters, lasagna, homemade macaroni and cheese, sausage, meatballs, scallops, about a thousand desserts-the list goes on and on! If anyone left hungry-it's their fault! Some pictures of the fun...
























I'm sure that most of you reading this recognize the usual "cast of characters". The last picture is of my daughter-in-law, Erin's parents, Carolyn and Dale Shaw. The very last picture is of Dale Shaw and me. The significance of this picture is to represent survivorship! Dale battled pancreatic cancer this year and of course I continue my fight with ovarian cancer. We both have a lot to celebrate!
With the coming New Year I have been reflecting a lot on 2009. I am ever so grateful to be in continued remission. Tomorrow is the start of a new year, a new beginning for each of us, and it is a time to take stock of our lives and what we would like to see for the future. For me, I am thankful to be alive and in remission, and I am thankful for my wonderful husband, family and friends. This year, I will try to find a way to deal with life's stresses, I will pray more, and I will live my life to the fullest. I will love and laugh freely. I wish for all of you a very happy and healthy New Year, filled with love, laughter, and hope! Nancy