Awesome Cancer Survivor

What's your Cancer Age?

Have you seen the Real Age calculators? Basically, it seems that we can calculate our real age by factoring in things like smoking, diet, exercise and medical history.  The goal is to keep your real age as low as possible.  Apparently, staying "young" is the key to good health and longevity.

Well, I've been thinking about this real age test, and feel it really does Awesome Cancer Survivors a serious injustice.  We get better as we age, not as we force our "real age" to a more youthful number.  As cancer survivors, each passing year adds to our collective strength and overall health.  In sharp contrast to the Real Age, a higher Cancer Age is a true status symbol!  To address the Real Age test's shortfalls, I'm rolling out a new test.  It's called the Cancer Age Assessment^TM. 

This assessment will reward cancer survivors with their true Cancer Age!  Your Cancer Age reflects the pain, anguish, and sheer guts it took for you to battle cancer and continue on as an Awesome Cancer Survivor.  As awesome cancer survivors, we've all experienced more in our lives than most people.  Your Cancer Age lets everyone know that you are a super hero! 

Take the Assessment!

Write down your Current Age:    ________________________

If you've never had cancer, subtract your current age from your current age.  You're at 0. Please stop here. Your cancer age is 0.  There are no prizes for you.

If you've had cancer, please continue.

Add 5 to your current age for each cancer diagnosis. 

If you were diagnosed with Cancer before 18, add 100.

If you were diagnosed with Cancer between 18 and 50, add 10.

If you were diagnosed with Cancer after 50, add 5.

If you had Chemo, add 25.

If you still remember the names of all your chemo druges, add 10.

If you lost your hair going through chemo, add 20.

If you had Radiation, add 20.

If you had surgery for cancer treatment, add 10.

If your oncologist attended your wedding, add 20.

If your pharmacy is on speed dial, add 5.

If you like MRIs, subtract 20.

If you have copies of all your medical records, up to date, add 25.

If you don't have any of your medical records, subtract 10.

If your primary care physician takes your calls on the first ring, add 10.

If you've redecorated the oncology waiting room because it was looking a little drab, add 50.

Results:

Add up your score and arrive at your Cancer Age^TM.

1-50 - Congratulations, you're an Awesome Cancer Survivor! Welcome to the club.  You're on a path to becoming a truly empowered survivor.

51 - 1000 - WOW! Not only are you an Awesome Cancer Survivor, you're a true old soul. You're a sherpa, guide, expert, and treasured resource for other cancer survivors.  You've battled cancer with grace, wit, charm, and alot of grit and perserverance.  You have an ability to reflect on the past and see great possibilities for the future.  You live each moment to the fullest and you're making sure that everyone around you lives the same way.  You see beauty in all things and truly live a life with a happiness that aches.  Without you, the cancer survivorship landscape would be a lonely place.  Thank you for all you do! I'd climb a mountain with you!

  

1000 + - Your score is off the charts! Please contact me immediately, I think there's a clinical trial out there somewhere specifically for you. Seriously. Call me right now!

Proudly display your Cancer Age on your site!  Want the Cancer Age badge - let me know.  Leave a comment and tell me your Cancer Age!

 

 

 

 

Keeping Cancer undercover

I just finished reading a series of articles about Mo Mowlam. I realize that many people outside the UK might not recognize the name, so I'll take a moment to provide an overview: Marjorie "Mo" Mowlam was a member of the British Parliament from 1987 to 2001. In 1997, she was the first woman appointed to the position of Secretary of State of Northern Ireland and was tasked with overseeing and facilitating the Peace Talks in Ireland. She was a very popular political figure and was involved with the Good Friday Peace Agreement talks in early 1999. By 2000, she left the Secretary of State position and returned to the Cabinet. She retired from politics in 2001 and passed away in 2005.

Why the history lesson?

I'm interested in Mowlam's story because five months before she was appointed to the Secretary of State position in 1997, she announced she had a benign brain tumor. Benign as in "not cancerous, highly treatable, nothing to see here" kind of tumor. On January 17th, 2010, the news broke in the UK outlining the extent of Mowlam's illness. The article, "How Mo Mowlam mislead Tony Blair," outlines how Mowlam hid her terminal (malignant) cancer diagnosis from Tony Blair and the UK, going against the advice of her doctor. Only her husband and doctor knew how sick she really was as she accepted her position as Secretary of State. This news has caused a stir in the UK.

Secretly Courageous or Calculated Liar?

The range of judgments levied at Mowlam have been all over the map. To some, she's a liar. To others, she's courageous. Still others think she was reckless and foolish, and could have seriously jeopardized the 1999 peace talks. The debate has started in the UK: Did Mo have the right to confidentiality? She clearly knew what she was doing. She insisted her doctor keep private the severity of her cancer. He husband and medical team were the only ones that knew the extent and terminal nature of her illness. Her doctor has finally expressed his frustration dealing with the professional dilemma he found himself in with Mowlam. As her doctor, he was ethically bound to honor his patient's request. In his case, his decision to remain quiet could have affected national security. Forutnately, Mowlam's health never affected her job as the Secretary. I'm sure this very unique case will be subject to much debate in the coming weeks. If I was faced with this situation, I'm not sure what I'd do. In my own case, it took some time for me to accept my cancer diagnosis and build a confident life as a cancer survivor. Now, my cancer story is well known. Mowlam's situation is very unusual but does expose some concerns that all cancer survivors will face at some point: what information do you share and how do you share it so it won't negatively impact relationships, a career, or your life in general?

To share or not to share....

To address the question of whether or not a cancer survivor should disclose a new illness or diagnosis, the American Cancer Society developed a great outline on Talking About Cancer. Cancer And Careers provide a great deal of information on discussing a cancer diagnosis with employers. I firmly believe that honesty is the best policy. I've always been open about my cancer diagnoses and treatments. However, I know there are situations where this might not be the best advice. When and why would you tell someone to hid an illness? I'd love to hear your thoughts on this subject.

Have you ever hid a significant health issue from others? Do you know someone who hasn't publicly disclosed an illness for fear of job loss or career impacts? How do you think this story impacts the cancer community? What about other health communities? I'd love to hear your thoughts.

P.S. A few people have emailed to ask if I was a fan of Mowlam's. YES! Absolutely. I think she was in a very difficult position. She made a decision to move forward the best way she could think of when she was diagnosed. We might not all agree that this was the best course of action, but we should never judge or diminish another's decisions. I think Mo was a very strong woman and made a great impact on UK politics.

Hey @Drew, here's what you do!

Hey everybody!  @DREW's finished his chemo!! Now that he's completed chemo, he gets pitched back into the real world of life, post-chemo starting now.  He’s a fighter and a survivor.  I’ve been honored to watch his progress, thanks to twitter, over the past few months.   He’s done a great job.  

 

His big day reminded me about my last chemo day, way back in 1993.  I was thrilled to close that chapter in my life.  No more needles, no more IV hooks.  It’s a strange time in one’s life – it’s a milestone that few people will ever have to mark, and it’s a milestone I wish more people could avoid… but until the elusive cure-all for cancer is discovered, some people will have to endure the chemo drips, the radiation burns, and the surgical scars, all in pursuit of restored health.

 

One thing I’ve always wished I had was a checklist or guide to my new post-chemo life.  Here’s my attempt at providing this list for Drew.…(I also shared the list with Brian Simpson (@BSIMI)  when he completed his chemo treatments too!)

 

To Drew, here’s a few things I wish I had known when I finished my last chemo.

 

1) There is no normal. You’re life will never return “to normal”.  Normal is a vaporous state, that’s never achieved by anyone.  Your life evolves; don’t spend precious time chasing some non-existent state of being.  Trust me, this one will save you millions in therapy… Just ask my shrink mental health coordinator. 

 

2) You might get anxious.  A few weeks out from your last treatment, you might get a little anxious.  You’ll realize you’re no longer “actively” fighting your cancer.  It can be a strange time.   For some people, chemo can act as a security blanket, it reinforces that you’re doing something to deal your cancer.  The end of treatment is rather abrupt… One day you’re getting chemo, the next day you're done.  No more treatment.  It’s like you just jumped into the deep end of life for the first time, without your “floaties”. It can be scary but, don’t worry.  The feeling will pass. 

 

3)   Listen to your body.  Your body is a fine tuned machine. An experience with cancer heightens your sense of awareness of your body and all its interconnected systems.  Pay attention to your body – when you’re tired, rest.  When you’re feeling blue, acknowledge it.  When you’re feeling good, enjoy it. Your body will tell you what you need – just listen to it and respect it.

 

4)   Make sure you go to all your follow-up appointments.  This is very important.  You might feel like a strong, healthy person and don’t need to see the doctors to “just to check in.”  Nonsense!  Make sure you check in.  Be an active participant in your long-term care.  You’re a survivor.  With survivorship comes the additional burden of long-term care.  Make sure your doctors have a long term plan for you - they’ll keep an eye on all your vital systems and make sure there’s minimal long term effects from your chemo.

 

5)   Celebrate the little things in life.  Every day is a gift.  Look around; take time to really see things in your life.  Beauty is everywhere. Life is a magical thing.  take it all in….. Enjoy it.

 

6)     Be patient. As you begin to move forward in your life, you might notice that not everyone around you has the “wide-eyed” optimism and appreciation for life that you now have.  Be patient with these people – help show them the way. (Thank you LS.)

 

You’ve done a great job sharing your story - everyone, including myself, will always gain strength from you.

Drew, welcome to the AWESOME CANCER SURVIVORS club.  You were a member the first day you were diagnosed.  Congratulations on battling the BIG C monster

My Birthday Wish

Tour de France 2009, Tufts, and Dr. Sprague

I've been a long time fan of the Tour de France, much longer than before the Lance Armstrong train came along and simply blew the world away.  When I heard about Nike's Chalk Bot this year, I knew I needed to submit two very special messages.  One for the best oncologist and one for the best hospital.  I think the messages speak for themselves, don't you?

and

A picture is worth a thousand words... especially when I can't find the right ones that say "Thank you" from the bottom of my heart.

Rock on! Livestrong.

If you're not laughing...

Last November, I was diagnosed with breast cancer for a second time.  Thanks to that diagnosis, I am now a three time cancer survivor.  I was in shock to say the least. I was mad, frustrated and totally overwhelmed by this news.   I couldn’t believe that the cancer was back yet again.  For days after that diagnosis, I couldn’t concentrate on my day to day life, I was anxious and anger.  I just couldn’t get a grip on the decisions I needed to make and the course I needed to take.  I had lost focus once again.  The doctors laid out my treatment possibilities for me.  I was numb – hadn’t I just finished this nightmare a few years ago?  I was back in the same doctor’s office – life was way too familiar for me again.   I needed to make a decision.  Would I go for another small surgery and spot treatment, or would I make the extraordinary decision to have a double mastectomy?  I met with the surgeon and plastic surgery team on December 4^th, 2007.  It was clear very early on in this meeting, that reconstruction would not be a viable option for me, based on my Hodgkin’s history and the radiation treatments I received long ago.  So, I had two clear options:  Take my chances with a small surgery or go for the major surgery and forgo the reconstruction option.  For a woman, this is an incredibly difficult decision to make.  I left that meeting extraordinarily angry – cancer had returned again, and I didn’t even have the option for reconstructive surgery.  I had no option to make my body whole again.  I walked to the elevator.  I was angry – I just wanted out of the hospital.  I wanted to go home and cry.   The elevator was taking forever.  I just wanted out.   Finally, after the longest minutes of my life, the elevator arrived.  I walked on to the empty elevator and jammed the 1^st floor button.  The doors began to close….just as the doors were closing, a bright aluminum crutch caught the doors and they popped open.  Onto the elevator hobbled a young man, dressed head to toe in Red Sox gear.  Jokingly, I said:  “Nice kick save.”  He looked at me, and said “Well, a kick save would have been difficult, that’s why I use the crutch for everything”… and then he glanced down.  I followed his eyes, and realized he was standing on crutches, with one leg.  His other leg was gone, his pants were pinned right below his left hip.   I couldn’t believe it.  I turned bright red, I was embarrassed.  I wasn’t sure what to say, I wasn’t sure if I should laugh or cry.  I looked back up and caught his eyes.  He was smiling.  He said, ”don’t worry about it.  I’ve learned I don’t really need that extra leg…I’m flattered you think I had the skills to make a kick save….”  And he started laughing…. With that, the doors opened on the 3^rd floor and he proceeded out.    He turned right around, caught the elevator door with his crutch and said to me “Don’t forget, if you’re not laughing at life, you’re not living it.”  With that, he was gone.  The elevator doors closed.  And I stood there in silence.  My mind was spinning.  5 minutes before, I was a very angry woman, worried about the decision I needed to make.   The 30 second interaction with that young man changed my life forever.   Right there, on the spot, I knew what I had to do.  I was going to have the double mastectomy.  It seemed like such an easy decision after meeting a man that’s learned to live his life without a leg. 

Birthday wishes!

It's my birthday!  If you're still shopping for that last minute gift, let me give you a suggestion:

How about a donation to the STALEY FOUNDATION?!

I'd like to be able to purchase 10 copies of each book on my booklist for Tufts Medical Center as soon as possible.  Please help me achieve this goal!  Thank you! 

There's only one October...

If you were near a TV last fall, I'm sure you'll remember Dane Cook's emphatic declaration "There's only one October." Yes, I know he was referring to the baseball playoffs and the importance of the major league champion. But, I really thought he was talking about me... and my birthday... in the month of October.

Anyone that's spent anytime anywhere near me around the month of October knows one very important thing about me: I celebrate my birthday all month long. Yes, the festivities kick off on October 1st and finally wind down on Halloween. It's one long month of birthday cake and good wishes. You'd think, as I get older, I'd begin to scale back on the merriment. But, as I get older, the importance of the festivities takes on a greater meaning. Three bouts with cancer will do that to a person.

I've never understood why some people look at birthdays as a curse, with no acknowledgment for the milestone. They act as if time is marching all over them, with each year ticking off their lives with a resounding effect.  People stomp through their lives, never stopping to celebrate milestones, small victories, and everyday achievements.

I probably celebrate my birthday to an extreme.  I mark every milestone with a small celebration - I stop and take the time to enjoy the ride and how I got there.

Here's my birthday wish for all of us:  For October, take the time to celebrate life... Celebrate a birthday, celebrate an achievement, just celebrate the day.  It will open your life to a great amount of happiness and joy.  Stop and smell the roses... and eat the birthday cake.  After all, it's my birthday month.  Cheers!  P.S.  Still looking for last minute birthdays gifts for me?  Well, that's easy --- DONATE to the Staley Foundation. 

Life... A post-chemo checklist.

Yesterday was a big day for my twitter friend, Brian (@bsimi).  He finished his last chemo and gets pitched back into the real world of life, post-chemo starting today.  He’s a fighter and a survivor.  I’ve been honored to watch his progress, thanks to twitter, over the past few months.   He’s done a great job. 

His big day got me thinking about my last chemo day, way back in 1993.  I was thrilled to close that chapter in my life.  No more needles, no more IV hooks.  It’s a strange time in one’s life – it’s a milestone that few people will ever have to mark, and it’s a milestone I wish more people could avoid… but until “they” find the elusive cure-all for cancer, some people will have to endure the chemo drips, the radiation burns, and the surgical scars, all in pursuit of restored health.

One thing I’ve always wished I had was a checklist or guide to my new post-chemo life.  Here’s my attempt at providing this list for Brian…

To Brian, here’s a few things I wish I knew when I finished my last chemo.

1)      There is no normal. You’re life won’t return “to normal”.  Normal is a vaporous state, that’s never achieved by anyone.  Your life evolves; don’t spend precious time chasing some non-existent state of being.  Trust me, this one will save you millions in therapy… Just ask my shrink mental health coordinator. 

2)      You might get anxious.  A few weeks out from your last treatment, you might get a little anxious.  You’ll realize that you’re no longer “actively” fighting your cancer.  It can be a strange time.   For some people, chemo can act as a security blanket, it reinforces that you’re doing something to defeat your cancer.  The end of treatment is rather abrupt… One day you’re getting chemo, the next day you're done.  No more treatment.  It’s like you just jumped into the deep end of life for the first time, without your “floaties”.   It can be scary but, don’t worry.  The feeling will pass. 

3)      Listen to your body.  Your body is a fine tuned machine. An experience with cancer heightens your sense of awareness of your body and all its interconnected systems.  Pay attention to your body – when you’re tired, rest.  When you’re feeling blue, acknowledge it.  When you’re feeling good, enjoy it. Your body will tell you what you need – just listen to it and respect it.

4)      Make sure you go to all your follow-up appointments.  This is very important.  You might feel like a strong, healthy person and don’t need to see the doctors to “just to check in.”  Nonsense!  Make sure you check in.  Be an active participant in your long-term care.  You’re a survivor.  With survivorship comes the additional burden of long-term care.  Make sure your doctors have a long term plan for you  - they’ll keep an eye on all your vital systems and make sure there’s minimal long term effects from your chemo.

5)      Celebrate the little things in life.  Every day is a gift.  Look around; take time to really see things in your life.  Beauty is everywhere.  Life is a magical thing.  Enjoy it.

6)      Be patient. As you begin to move forward in your life, you might notice that not everyone around you has the “wide-eyed” optimism and appreciation for life that you now have.  Be patient with these people – help show them the way. (Thank you Liz.)

Brian, welcome to the cancer survivors club.  You were a member the first day you were diagnosed.  Congratulations on battling the BIG C monster. 

My cancer by the numbers

I'm an engineer by education, so sometimes I think it's easier to explain my cancer experience by the numbers: 

I've had Hodgkin's disease once, Breast Cancer twice.  I was a 20 year old college sophomore, fighting my way through cancer for the 1st time.  To diagnose the Hodgkin's, I had every major organ in my abdominal region biopsied, a section of my hip removed, my spleen removed, and for good measure, I let the doctors take out my appendix too.   To treat the Hodgkin’s, I had 18 weeks of radiation and 9 rounds of chemo therapy.  My chemo regime had 4 drugs.    I still have 21 little blue radiation tattoos used to mark the radiation field on my body.  I lost all my hair and lost a ton of weight.  It took close to 3 years to battle through the Hodgkin’s.   

At the age of 33, I was diagnosed with breast cancer for the first time.   I had one lumpectomy and 5 intense days of Mammosite Radiation.  For two years, I dealt with horrific side effects from “the anticancer drug” Tamoxifen – dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers… Sometimes, the cure is worse than the disease.  Last November, I was diagnosed with breast cancer for a second time and I opted for major surgery - a double mastectomy.  I had my thyroid removed during that surgery too.  In total, I had 3 separate courses of radiation, 1 course of chemo, 8 major surgeries, and 1 bone marrow biopsy.  Whew…

I'm walking proof that super glue and duct tape works wonders.
But in case you want to know... I can still hit a golf ball 250 yards on a good day... bad day, maybe 235.