NOVEMBER - MOVEMBER - I LOVE YOU ALL!

One of the reasons I began writing this blog was to create awareness of Ovarian Cancer – its symptoms, its treatments, the amazing breakthroughs that have been made over the past few years, and the incredible need for so much more research – until we find the cure!  And a cure will be found.  I truly believe that.  Maybe not in my lifetime, but soon – a cure for ALL cancer.  But in the meantime, there is so much to be done.  Today I would like to touch on two cancers that are being reflected on this month. 

November is Lung Cancer Awareness month.  We all know someone who is fighting this battle or someone who fought the valiant fight.  I’m not sure if we all know that Mesothelioma is a very specific type of lung cancer – a completely preventable type. Mesothelioma is caused only by asbestos exposure.  Knowing more about the disease and its risk factors truly does make a difference. By raising more awareness and rallying support, hopefully one day we can get asbestos banned once and for all. 

I have a very personal connection to Mesothelioma – or at least the cause of it.  My husband was a fireman for 20 years.  He worked 24-hour tours in firehouses with asbestos ceilings.  He spent most of his 20 years running into burning tenement buildings built in the era when entire heating systems and boiler rooms were coated in asbestos.  In the 1970s the town he worked for made a very vocal political statement by cleaning all the asbestos out of the school buildings.  Meanwhile, the firemen in the town who were sleeping and eating and living in firehouses with asbestos flaking off the ceilings in the dormitories were being totally ignored when they brought up the danger.  Fortunately, he does not have Mesothelioma however he does have banding on his lungs and definite damage from the asbestos.  He is monitored constantly for any signs of cancer. 

Despite the fact that asbestos exposure is still the Number One cause of occupational cancer in the US, it is still not banned.  Roughly 30 million pounds are still used each year.  It can still be found in many homes, schools, and commercial or industrial buildings.  It was once used in more than 3,000 consumer products including household items such as toasters and hair dryers – some of which may still be in use.  Asbestos fibers are invisible to the naked eye and NO AMOUNT of exposure is safe.  Navy veterans are at the greatest risk to develop Mesothelioma as asbestos was widely used in naval ships and shipyards.  But, as with firefighters, many occupations are also at risk. 

My goal is not to frighten anyone, but just to make you aware.  Asbestos is everywhere and it needs to be banned.  The Mesothelioma Cancer Alliance has put together a fantastic website with tons of information about the disease - www.mesothelioma.com.  I encourage you to check it out.  Emily Walsh, Community Outreach Director for the Alliance has put together a fact sheet that answers a lot of questions and gives us all a lot to think about: http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm – and, for my firefighters out there, please check out http://www.mesothelioma.com/asbestos-exposure/occupations/firefighters.htm.  We want you all to be safe.

November is also Movember!  Not familiar with Movember?  The month-long campaign hopes to be to prostate cancer what October is to breast cancer -- with charities, retailers and survivors around the world using this page of the calendar to raise awareness and money, money, money.

In the past decade, those fighting the second-deadliest cancer for men have increasingly claimed the 11th month for their cause. Started in 2003 in Australia by two guys having a beer, "Movember" began as a moustache-growing challenge -- plunk down $10 for the "privilege" of growing a 'stache’ for the month. The proceeds would go to the Prostate Cancer Foundation of Australia.

By 2012, 21 nations were participating in various moustache-sporting and shaving events -- including the United States -- enlisting the support of more than 1.1 million Mo Bros and Mo Sistas and raising $147 million. 

I’m a daily Today Show viewer and I’m loving the fact that none of the guys are shaving this month.  I also loved the fact that they had prostate exams live (behind walls) on the show to prove how quick and painless the process is.  I especially love the entire awareness program because my husband is a prostate cancer survivor.  Yes, he’s been through an awful lot – but he just keeps on ticking!  Amazing, brave, courageous, tough, fearless – that’s my Lieutenant Grandpa!  He’s a number 1 prime example that, caught early, prostate cancer can be cured.  He had his annual PSA for years and, when it began to climb, his doctor performed the appropriate biopsies.  They were positive, but in a relatively early stage.  Hormone shots and radiation were completed and he has been cancer free now for over two years.  His PSA is barely readable and he feels great. 

He’s not growing a “stache” or even a beard but he’s a healthy, walking poster boy for Prostate awareness and early detection. 

With Thanksgiving also in the month of November, it brings me to think of all the things I’m grateful for – like my wonderful husband.  I know that I actually feel physically better when I’m reminded how truly grateful I am for something.  Studies have shown that if we just take the time to appreciate the good things in our lives, smell the roses, count our blessings – whatever you want to call it – our sense of wellbeing expands exponentially. 

If something triggers my “be thankful” button – and it can be anything from a magnificent sunrise to what my friend calls a “God Almighty” sunset to the “making a difference” stories I hear on the news – I “lean into it.” (I stole that phrase from a magazine article I read recently.  It so reverberated in my soul, I just had to use it. Rosemary Ellis, please forgive me.)  Leaning into a really touching “be thankful” moment makes me think of all the things and people I’m grateful for.  We spend our days barreling through the days – we need more “lean into” moments. 

Whether it’s the ocean breeze blowing on my face, or my husband’s offer to help with dinner, or the funny photos and videos my kids send me, or the hilarious stories my friends forward to me, or each and every one of you who have always been there for me, or my little birds who make such a mess of the birdseed on my balcony – they all cause me to “lean in” and take a rest stop. Remember, in life it's not happiness that makes us grateful, it's gratefulness that makes us happy!  Try it today.  It will be the best moment of your day!  God bless you all!

WAIT FOR IT!!!

I know I have been an advocate for keeping a journal – and I still am.  It has proved useful over and over during these past 5 years.  Looking back, though, I find that I usually refer to it after a remission and recurrence of the disease to refresh my memory of the chemo effects to come and how best to deal with them.  This new “chronic” status has thrown me.  Because I’m dealing with the same drug and the same side effects every 3 weeks, you would think this would make life easier.  NOT!  This week was a perfect example.

Now normally I know that at some point within the first 6-10 days after treatment, the drug will want to exit my body.  At least that’s what I call it.  I’m sure it’s just a phenomenon caused by diet, medication side effects, diet, stress, exercise, and diet.   But I like to think the drug just decides it’s time to leave.  When this happens, I usually have a significant amount of pain, sometimes nausea, and eventually it leaves the body.  It seems to enjoy doing this between the hours of 10PM and 3AM.  This is all well and good – I have learned that a GasX here and there helps the progression along.  I am also adamant about not taking an Immodium during the process (I want this junk OUT of me) – unless, of course, the exiting process extends into the next 24 hour period.  Just bear with me – I’m trying to be as delicate and sensitive as possible. 

For some bizarre reason, when I begin to feel good around day 5 or 6, I forget that the drug is still there – and it MUST leave, no matter how great I feel that day!  It will happen!  (I think I’m going to paste that on my refrigerator on the day I have chemo!)  “WAIT FOR IT!”

Okay, so last week we returned from a fantastic trip to NY to see our Son and his family, including two of the cutest and smartest little boys you could ever wish for – no really they are!  It was such fun.  When we landed we couldn’t find our car and the credit card that replenishes my E-Pass had expired so they wouldn’t let us out of the parking garage- but we finally made it home.  Next day, 8:15AM – chemo!  Everything went well and by Monday I felt fantastic.  WOW, this was great.  We went for my labs, did some shopping, went for a long walk on the beach, and I began craving egg rolls and fried rice.  Actually, it was a toss-up between that and a steak quesadilla and black beans and rice.  We opted for the Chinese takeout.  It was great and my husband now thinks I’m pregnant with cravings. 

 

The next evening I gave him the choice of dinner – he wanted Thai. I cooked Shrimp and noodles in peanut sauce.  Terrific! The next night, still feeling fine, I decided to continue on our international tour and make Sausage and Peppers.  Again great – until about 9PM when the drug decided it had had too much around-the-world cuisine.  The pain was so severe that I began to believe I really was pregnant and about to give birth to a T-REX.  It actually took me 2 hours to remember that GasX helps in these circumstances.  What was wrong with me??? It was only 3 weeks ago that I went through the same thing – only not the international version. 

By 2AM I realized a few things – I was so eternally grateful for my recliner chair and my iPad, both of which had kept me comfortable and distracted during the past 5 hours.  I also realized what a putz I had been.  I knew it was coming, but subconsciously chose to ignore it and “live in the moment.” 

Well, my “moment” has passed and so has the drug.  For the next few days, yogurt is my food of choice in the AM and a basic meat/potato/vegetable dinner at night.  I believe I’m on my way to twelve good/great days ahead – before we start all over again.  My husband continues to tell everyone we meet that I’m pregnant – and, yes, I’m still craving that steak quesadilla with black beans and rice from Clancy’s Cantina in New Smyrna Beach!  Maybe over the weekend!  TYG4E

HAPPY BIRTHDAY MOTHER!!

~ ALICE  VERONICA~

This may or may not be off my usual topic – but off topic may be a welcome relief to some of you!  Today is my Mother’s birthday.  She would have been 106, but we lost her 50 years ago.  Early onset Alzheimers is what her medical chart said.  At the time it was called premature hardening of the arteries.  “Alzheimers” was not in the common verbiage.  I was eleven when she was hospitalized, but she had been showing signs and symptoms for a long time and was being treated (more like manipulated) by archaic medical treatments – all of which left her more confused and less able to cope.  The angels took her home at 56.  

I’ve been thinking a lot about her today and, even though I was only with her for a fraction of her lifetime, I feel I benefited so much from her gentleness and strength. 

She had to be strong, she was raising 3 very active boys – two teens and an 11 year old – when I showed up.  Surprise! My Dad worked two jobs but between them they raised some pretty good kids (I’m a little questionable:).   My three brothers are all very accomplished, stable, truly nice people.  In this world today, I think that’s quite an accomplishment for any family – especially one where one parent is fighting a heinous disease and the other is trying to balance his grief and the realities of day to day life.  

She was the most gentle person I’ve ever known.  I don’t have a lot of memories of my short time with her – I think I’ve blocked out a lot.  But the few I do have are very precious.  She loved to laugh and she would get the rest of us laughing until we were all crying.  One Sunday afternoon, she was in the kitchen with my sister-in-law, making dinner.  All of a sudden I heard them screaming.  I went running in and there they were standing up on kitchen chairs screaming and laughing and crying all at the same time.  A tiny mouse had found its way into the house and was checking out the dinner menu.  I laughed so hard I thought I would be sick.  

Once my brothers knew she was terrified of mice, it was open season on the practical jokes.  Their favorite was to wait until my Mother was sitting on the couch in the living room at the end of a very long hallway.  They would tie a string around a rubber mouse, make a noise, and hide in the closet.  My Mother would turn and see the mouse slowly wandering across the hallway and the screaming, laughing and crying would begin all over again. 

I can picture her sitting at the piano, playing at every family gathering.  She loved to play and she played by ear.  She couldn’t read a note of music, but that didn’t matter.  She taught me how to play When the Red Red Robin Comes Bob Bob Bobbin Along but I wasn’t the most dedicated student.  I really wish I had been.  What a gift she had!  

When it was time for me to go to Kindergarten, she decided to home school me.  It wasn’t called that at the time, but that’s what she did.  By the time I got to first grade, I could write my name and address, the alphabet, my numbers, do simple math, and say all my prayers (I went to a Catholic school).  I’ve had a lot of exceptional teachers over the many years of education I’ve been fortunate enough to experience, but none as caring and effective – and none with her tender and smiling disposition.  There’s an unfortunate side note to this memory.  My Mother allowed me to write with whatever hand I chose.  I was a lefty.  When I went to school, the old Irish nuns slapped my hand with a ruler whenever I used my left hand.  According to them left-handedness was a sign of the devil.  Oh the good old days! 

She had the most beautiful smile.  I can close my eyes and see it clearly.  When I was in 2^nd grade, I ran a marathon of diseases – all back to back.  I presented at school one day with a case of the measles and was immediately sent home.  When that was waning, the chicken pox moved into our house.  My immune system apparently had taken a vacation, because Rheumatic Fever followed – all within a 3 month period.  My Mother was back to home schooling again, and nursing, and humoring a really miserable 7 year old patient.  She played the piano, we played games, (remember, no TV in those days – no Wii – no iPOD – no Angry Birds).  She taught me how to crochet and knit and mend.  She answered my many complaints with hugs and kisses and her beautiful, steady smile.

My Mother liked liver and onions, but none of the boys would eat it.  I remember her making it for our lunch – often!  She said she was going to get one of us to like it.  It didn’t work with me either! 

Whenever I had a cold, she would sit me down in the kitchen and get the Irish Whiskey out.  I got a little bit in a tiny shot glass and was told it would cure the problem.  After that, she would cut a lemon in half and give me a saucer with sugar in it.  She said to dip the lemon into the sugar and suck out all the juice.  This was absolutely guaranteed to make me feel better – and it did.  She had the cure for everything. 

When my best friend was hit by a car and killed the first day of our summer vacation after second grade, I was inconsolable.  I was holding his hand one second and he was flying through the air the next.  She was the only one who could calm me – the only one who had the right words.  Sometimes when I’m particularly upset by something, I talk to her.  I wish she could hug me but I know she’s there with me smiling that smile and loving me as no one else ever could or ever will.  That’s what Mother’s do and she was very good at her job. 

                          Happy Birthday Mother!  I love you!

CHRONIC CAN BE A GOOD THING!

Thirty-three years ago, I walked into my surgeon’s office and said, “WOW, I actually made it 5 years”.  I was referring to my breast cancer surgery which he had performed, very successfully I might add!  He was an excellent surgeon and a truly nice person.  He didn’t look very happy about my pronouncement!  He told me that new statistics now showed that the true marker of success was currently considered 10 years.  Talk about deflating your bubble!  Well, I made it to 10 and ultimately to 38 years – so I guess he did his job well – and I guess I beat the odds:) 

Last week I walked into another surgeon’s office – my current Guardian Angel – and said the same words.  Knowing that Ovarian Cancer is not famous for its long-term survival rate, I was just thrilled to be standing there.  After some discussion, I learned that it’s not always considered the automatic death sentence I had considered it.  In some situations and medical practices, it’s actually being treated as a chronic disease.  WOW, that was a shock – a very pleasant one for a change.  I decided to do some research and came up with some interesting facts I would like to share.  Bob Dylan said it first: “The times, they are a’changin” 

Before I run the risk of getting too serious, I must tell you that this 5-year milestone had another effect on me.  I once again began to look over my shoulder at the calendar pages flying by.  Good Lord, I’d made it 5 years – that big chariot has to be coming soon to pick me up.  I began to think of all the things I should be doing, but all I really wanted to do was stay in my ever-shrinking comfort zone.  Tim McGraw’s hit song “Live Like You Were Dying” asks what you would do if you thought this might really be the end.  His answer is “I went sky diving, I went Rocky Mountain climbing...”  I’m terrified of heights, so those were out.  But I thought that living a quiet, normal(?) life was somehow giving up and giving in to the cancer.  Fortunately for me, I have extremely supportive and very smart people around me.  My daughter is a psychologist who

always manages to think outside the box, my son constantly amazes me with his insight and thoughtful questions, my doctor and nurses deal with people like me every day and are more than willing to jump in and help – which they did, and my husband is a saint with 40 years of living with my ups and downs.  They have, once again, grounded me and made me realize that what I am doing is what’s best for me right now.  So I’m back to celebrating the 5 year anniversary and ignoring the calendar pages – I watch the waves roll in and I thank God for all the amazing and wonderful gifts in my life!

 

Speaking of gifts – let’s get back to this new (at least to me) chronic disease classification.  Often called the "disease that whispers" Ovarian cancer causes more deaths among women than any other type of reproductive cancer.  The symptoms are often vague and women and their doctors often blame them on more common conditions.  By the time the cancer is diagnosed, the tumor has often spread beyond the ovaries often leading to death.  By then, the disease is most likely in the later stages and the majority of women survive but a year or so.  But, as I’ve recently learned, many Oncologists are now treating Ovarian cancer as a chronic disease and, as a result, are extending the lives of many women fighting this cruel monster. 

Dr.  Method and Dr. Rodriguez, two Gynecologic Oncologists in Northern Indiana, explain that by treating the cancer as chronic rather than acute, they are extending the lives of their patients. They claim to have 50 percent of their patients surviving 5 years or longer and they believe it's because of appropriate surgery and aggressive chemotherapy. They treat their patients as if this disease is something they can live with, and live successfully with, for many years. 

The following is from an Abstract by the Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia: 

Ovarian cancer is the deadliest gynecologic malignancy in the United States. Evidence-based interventions for the prevention and early detection of ovarian cancer do not currently exist. However, several treatment guidelines, including the receipt of treatment from a gynecologic oncologist, have been shown to result in improved survival from ovarian cancer. 

Wow! “...the receipt of treatment from a gynecologic oncologist...”  I’ve always known I was blessed by finding my special Guardian Angel, Dr. M – I just never knew how very blessed.  My gynecologist of 20 years immediately sent me to him when my trans-vaginal ultrasound showed increasing fluid and my CA-125 was 475 – up from 2.1 the previous year!  

Turning ovarian cancer from a disease that whispers into one doctors can diagnose and treat before it's too late seems to be looming on the horizon.  Ironically, the “magic new screening test for ovarian cancer” seems to be the same CA-125 that I have been getting annually for many, many years.  Whenever we moved and I was forced to change doctors, I always had to fight for the annual blood test.  I was told it lacked sensitivity and specificity, it caused too many false positives, it was too expensive and too inconclusive.  I always fought and fortunately I always won.  Ironically, that test is now the “new test to screen for ovarian cancer” which appears to detect the disease in early stages, and if confirmed in clinical trials, the test could become a routine screening for women.

In the study, researchers tested the strategy on more than 4,000 women over an 11-year period. The women underwent yearly blood tests, and the researchers recorded the levels of a protein called CA-125, which is produced by the majority of ovarian tumors. Women who had sudden increases in CA-125 levels were referred to a gynecologist and were given an ultrasound. The new strategy is different because it tracks changes in each woman's levels of CA-125, instead of only looking for a CA-125 level that might be considered high based on the average of the entire population. It's more personalized, and it also incorporates age. 

 

Thank God they have found a new way to utilize this test.  It has always been an accurate and responsive marker for my cancer.  When it climbs consistently, the cancer is active again – when it drops steadily, the cancer is regressing.  

In order for this method to become a screening test, it has to pass the gold standard.  It has to show that in a large group of women who did the screening, there were fewer deaths from ovarian cancer compared to another group who didn't get screened.  The researchers are waiting for the results of a larger, randomized study currently being conducted in the United Kingdom that uses the same screening strategy. The results are scheduled to be released by 2015. 

Over 14,000 women die of Ovarian Cancer every year.  September is National Ovarian Cancer Awareness Month.  TEAL is the color – wear it proudly!  There are many organizations who work tirelessly to ensure that necessary treatments are covered by Medicare, that drugs and tests on the market are safe and effective, and that federal policy makers are aware of the importance of the ovarian cancer community.  Please do what you can to fight for women with ovarian cancer, and policies that help support them and their families.  May God bless you with good health!