Mother and Daughter

It's a lovely thing for a mother to hear that her daughter "looks just like" her, or that she has a laudable characteristic attributed to "being her mother's daughter".  It makes us feel a connection to our daughter and that, maybe, we did something right in raising her. I am just very grateful that I managed not to ruin my own daughter.  As for her character and intellect, she brought those gifts into the world herself.

But I will guaran-damn-tee you, there is one way no mother wants her daughter to be like her--to share a gene mutation that means her child is at an increased risk for a disease of any kind.  Oy!  When I first talked with my surgeon after my diagnosis, he encouraged me to get genetic testing for breast cancer.  I told him that it was clear that I had a proclivity toward breast cancer because, after all, I HAD breast cancer.  We also knew that our daughter was at risk because her aunt, both of her grandmothers, and now her mother, had breast cancer.  We talked about other things we needed to talk about for a while and he encouraged me to have genetic testing once more.  I said "I don't think it is necessary at this time". Before the meeting was over, he returned to the subject a third time.  Okay, now, I'm annoyed, figuring it is just one more unnecessary, expensive test.  So I buttonholed his fine tweed blazer and went nose to nose with him (Steve was ready to bolt out the door at any moment because he knows how I can get) and said in my incomparably confrontational tone:  "I don't GET it?  Why do you keep suggesting genetic testing??!!" He replied in a quiet tone:

"Ovarian cancer".  

Jeezopeezo, why the hell didn't he say that from the get-go?  Ovarian cancer?!!?  OVARIAN CANCER?  Yes, the genetic mutation of BRCA1 and BRAC2 genes that are indication of increased risk for breast cancer are implicated in ovarian cancer as well, and the rate of survival for ovarian cancer patients is approximately a heartbreaking 25%!! Terror struck my heart--for myself and for the implications for Casey.  I was sick to my stomach thinking about her having that sort of "sentence" at 22 years old.  I was now also furious with my surgeon for not being forthright (would I have ever known if I hadn't challenged him?), and with my OBGYN who had not ever mentioned genetic testing for ovarian cancer even though she was well aware of my family history (and who I had asked, specifically, about screening for ovarian cancer when my friend Claudia was diagnosed). Arrrrrrrgh!

Long story short, Steve and I became educated about genetic testing, went through a qualifying screening which basically examined the occurrence of cancer in my family tree, received pre-approval from our insurance company (the test costs a few hundred dollars but nothing compared to the cost of treating cancer), and I had a simple blood draw for the genetic analysis.  Easy as pie.

So, what we found out was:

• 80% of  cancers are sporadic (by chance)
• 10-15% of cancers are familial (occur within family groups but are not clearly genetic)
• 5-10% of cancers are genetic.
• features that suggest hereditary cancer are two or more relatives with the same kind of  cancer, cancer diagnosed before age 50, persons have more than one cancer, genetically related cancers such as breast/ovarian and colon/uterine cancers.  

Hereditary Breast and Ovarian Cancer Syndrome (HB0C) is due to mutations in the BRAC1 and BRAC2 genes.  Here is the frightening part:  Women with BRCA1 mutations have a

•  50-85% lifetime risk of breast cancer, compared to 10-12% lifetime risk in the general population.  
• 40-60% lifetime risk of ovarian cancer, compared to 1-2% lifetime risk in the general population.

THIS IS HUGE!  They have a 50-85% of rain or a 40-60% chance of rain, compared to almost no chance of rain.  The significant difference in risk for ovarian cancer is mind boggling!  (The risk factor for the BRCA2 mutation are exactly the same for breast cancer as the BRCA1 mutation, and the risk factor for ovarian cancer is a 15-20% lifetime risk. But with a 25% survival rate, who wants to play those odds?) Furthermore, the BRAC2 gene is linked to pancreatic cancer, larynx cancer, and melanomas.

And for mothers of sons, if the BRAC1 or BRAC2 mutations are passed to your son, his risk of certain cancers increase.  There are also some ethnic groups with more frequency of these genes than others.

My daughter and I dodged the bullet on the gene mutation (I do not have it so I could not pass it to her).  There is still the family history to keep us alert, but for the genetic results, we are thankful and relieved.  So, we can claim a "happy ending" for now.  I would like everyone to have a happy ending. 

• If there is a history of breast cancer, ovarian cancer and/or colon cancer in your family, the very least you should do is meet with a genetic counselor to assess your eligibility for the test.
• A genetic counselor will work with your insurance company to prequalify you for the test.
• If you have the test performed, the genetic counselor can provide education appropriate for the results of your test.  There are a number of pre-emptive decisions one can make to prevent these diseases.   

There is virtually no way to detect ovarian cancer early except by luck.  It is usually a disease without symptoms until it has progressed beyond an easy cure.  Knowledge of your genetic susceptibility increases your chance to prevent the disease.  

Knowledge is truly power against ovarian cancer.  

Girlfriends! and. . .

There is a lot to be said for girlfriends when you are going through the trials and tribulations forced upon you during cancer treatment.  My own cadre of good will soldiers have been there all the way--meals, games, happy cards and goofy or sweet gifts, or just being on the other end of the telephone line when I needed them.  My girlfriends?  Could not have done it without them. . .

That being said, there's also a lot to be said for "boyfriends"!  

Steve gets the five star award for being 100% THERE.  I cannot imagine passing through that tunnel with anyone else holding my hand and encouraging me every step of the way--consulting on my decisions, indulging my weaknesses, listening to my fears, comforting and feeding and never once complaining, even with a raised eyebrow.  Slept twelve hours last night and you are now just finishing a four hour nap?  "You obviously need the rest to recuperate." Basically trusting me to know my needs and limits and indulging me every step of the way.  Unbelievable and so very MINE!

Michael, my sweet boy, gentle and somewhat spooked (I think) by the whole damned thing but what's a kid to do when all of a sudden his mother is bald as a cue ball, sleeping 16 hours a day, and barely strong enough to get out of a car?  He was surely entitled to ask "Who are you and what have you done with my mother?!"  But instead he gave me long hugs, offered his hand, lent me a warm running cap, and called home from college to chat and ask me to read his papers and to tell me he loved me.  Like father, like son.

And there are more boyfriends, I am not ashamed to say!

My brother (by way of marriage) Jeff who had a similar but totally different experience ten years ago was tremendous and became my own personal support group.  Jeff is positive and upbeat and very caring.  He listened when my mood was bummed and did not try to jolly me through bad moments but always made me feel that "This is normal for where you are now" and, by his very example and without words, he stood as a symbol of returning to normal as I knew it to be.  He senses where I am in this journey and his comments about his own experience are both somehow totally un-selfcentered and perfectly timed for where I am at this moment.  He texts and calls me frequently just to say he is thinking of me, or to talk about what his family is up to, or about the weather.  Like brother, like nephew, like family.

At the risk of playing with fire, Steve's partner and his boss, are in this category of "boyfriends".  Oh my.  Mike, who we have known forever, IS the rare one who can tease me about the cue ball or the endless naps because his humor has an edge but no sharp teeth.  There's a foundation of mutual affection coming from years spent together watching his twins and Michael grow up as friends. And Steve's boss, Ray, WOW.  I met him at dinner about the time I was diagnosed, and was surprised and not a little pleased that he checked in with me from time to time to see how I was doing--by inquiries to Steve and emails to me.  Now, who says there are not great guys out there?

And there are more:  my brother Arnie with his indescribable curmudgeonly sense of irony, providing me with entertaining anecdotes about everything from politics to our family history and making me laugh at his ridiculous observations of the way the world is.  Checking in frequently from his mountaintop in New Mexico.  Ziddy, my own dear personal, extraordinary trainer for five years who totally qualifies as a "mensch" with a corny sense of humor and who is just like a brother to me.  "Mr. Wonderful", my friend's husband, who volunteered to have his head shaved with Steve and me as a show of support, and who never fails to make me laugh with HIS curmudgeonly grumbling about "stuff".  Or nephew Byron, sweet like his cousin Michael and always a favorite, "just checking in". Scotty B, making me feel like some sort of special princess when we meet him and his wife for dinner. And Max, dear ever lovin' Max, who made me laugh heartily in high school, taught me to skydive in college, helped me drown my sorrows in beer every time I was dumped by a boyfriend, and is always there to this day to laugh and chat and remember when we were young and the future was endless!

So, to my girlfriends, I could NOT have done it without you.

And to my boyfriends, I could not have done it without YOU.

And to Steve, thank you for realizing how important both my girlfriends and boyfriends have been in bringing me to this feeling of health and recovery and optimism!

Some days. . .

Some Days You Gotta Dance    ------Dixie Chicks Some days you gotta dance  Live it up when you get the chance  'Cause when the world doesn't make no sense  And you're feeling just a little too tense  Gotta loosen up those chains and dance You gotta loosen up those chains and dance  Come on and loosen up those chains and dance. Some days you have   just! got! to! dance! And  today, I am a-dancin'  in my body, mind and soul!!! Whooeee, do I feel great!

Games People Play

Growing up in Montana in the 50's and 60's, and spending summers at my grandparent's ranch, we entertained ourselves "of an evening" with a variety of indoor and outdoor games:  No Bears Are Out Tonight and Kick the Can were really big hits. Since nothing beyond Ed Sullivan and Lawrence Welk graced the tube (yes, one station!), we often found ourselves at the card table playing canasta with our larger than life Grandad who slapped cards down on the table with a great "whop!", predicted in booming, definitive tones that the next card was sure to be HIS winning card, and danced in glee around the table when he won a hand--just like a hugh St. Bernard puppy.


My best childhood friend, Colleen, and I would spend hours at her family's kitchen table playing Gin Rummy.  Col was a shameless card cheat--peeking and stacking the deck and cackling in delight when she won--fairly or unfairly, it was all the same.  I was challenged to thwart her nefarious ways and it all became a game within a game.  We are best buddies to this day, but believe me, I know the meaning of playing my cards "close to the chest"! 


And now, my family will tell you that I am a sicko game player--Scrabble, crosswords, Tabu, cards, puzzles, you name it.  I love to play games.  I can (and have) spent many happy hours waiting at airports, in flight, on car trips, in the chemo cocktail lounge, playing games to pass the time.  My son Michael regularly kicks my butt in Lexulous now-- my daughter Casey prefers to wax me in Spanish Scrabble. I consider it a personal victory that they both play games with their friends and me.


But, ten years ago I discovered Mahjjong and, Sistah, it was all over. Mahjjong (spelled as many ways as it is played) is an ancient Asian game played around the world by Asians, Jewish women, military wives, business networkers and my friends (all of the above).  The game is played with hefty tiles which are used like cards to build winning hands (according to the RULES, Colleen!) and engages all the senses:  the smooth feel of the tiles, the sound of their clicking as they are discarded, the sight of the Asian characters on the tiles, and the smell and taste of the noshes always served during play.  Okay, okay, so food is not part of the game, but it is definitely part of the tradition. 


I introduced Shelby to the game, and true to her nature, she now knows more about Mahj than just about anyone and is on a first name basis with  the experts in the field. There are  cruises and tournaments and neighborhood games--Shelby has done all of them, and won at all of them.  We play regularly with friends and, when desperate, play our own highly irregular two handed version.  We have taught 22 newcomers and secured our own special circle of players (taught correctly, may I say) who have raised both the competitive bar and the laughter quotient! Needless to say, Mahj is an illness all it's own.


And to what use?  Idle entertainment for someone with too much time on her hands?  A waste of time?  Useless pursuit? Or perhaps something else?  For me, the games I play have created close friendships that have translated to a spectacular array of supporters during my fight against cancer.  My game buddies have been here whenever I need them--bringing food, flowers and thoughtful or gag gifts; being available for conversation, transportation, overnight stays when Steve is out of town. Colleen regularly sends me encouraging bundles from Utah where she lives and I receive humorous cards and uplifting stories from the Texas Tiles, a special group of women who Shelby and I taught to play Mahj last February in San Antonio. Michael and his girlfriend and my friend Ruth in Georgia are on line with me regularly playing word games.  All of this has brought me through four months of isolation during chemo in good cheer and entertained without feeling isolated.  As a wise young man recently said to me:  "life without relationships is no life at all."


To celebrate the end of chemo, I had a small paMahja party with pizza, special t-shirts, and plenty of goofiness during the evening here at home with my regular Mahj group.  And several decades later, I can still hear Grandad's booming voice and see his Saint Bernard dance as he looks at my entire group of friends and trumpets:  

NOW THAT'S A WINNER!

Jody, Alice, Judi and Shelby

at the paMAHJa party

Taming Medusa's Snakes

10 PM August 2, 2010.  "Linda, this is Dr. Lilly.  We got your report back and it is cancer." Direct and to the point--delivered gently.  I actually apppreciated that.  No tap dance around the facts.

Generally, when things go kablooey on me, the image of Medusa with her hair full of snakes comes to mind. Not the mythology that goes with her, just those damned snakes circulating through her head!  It is a perfect depiction of me at my most overwhelmed--thoughts, fears, questions, too much information and I can only describe it as "my head is full of snakes".  And that is how I felt for the first several days after diagnosis--too much information!!

Stages. grades, genetics, surgeries, reconstructions, radiation, anti-hormone therapy drugs, implications--well you can choose your own expletive. I had to get my head around a lot of information, quickly, and with available resources provided by my doctor and Steve's research on the net, believe me there was plenty to consider! So, this is about how we tamed the snakes. And if this can help guide or calm someone else, please share it.

In a panic, I called a friend (who had fortuitously materialized as the nurse at my biopsy).  She soothed me and coaxed me back from the edge of the precipice.The jist of Jenny's message to me was:
     Since you do not have all the information back yet,  be careful not to rush to judgment about major decisions
     Remember that this is not a medical emergency and you have time to make an informed decision.

She calmed my fears and gave me time to step back and consider: what can I do to manage all this information? Despite my willy-nilly creative side, I have an analytical mind, when needed, and I decided to revert to my business days and use a decision tree analysis to see where it led me. "If this, then what?" Wow! Did that ever help!

I started with what I knew about my cancer to date: type, stage, pathology then began the tree below: "If this, then what?"  Each step forced me to understand my options and gave me questions to ask various members of my care team.  The chart changes as additional information comes to light and as decisions are made based on that information.

This methodology also prepared me for the free second opinion clinic  at Riverside Hospital staffed by a surgeon, reconstruction surgeon, Medical Oncologist, Radiation Oncologist, pathologist, radiologist, and nurse who spent three hours with my husband and me--reviewing the reports, answering questions, making recommendations.  By the way, they were very impressed with my little tree.  Must be the landscaper in me.  :-)

I will be glad to guide you through your own decision tree if you like--it worked wonders at taming all the snakes in MY head.  Just contact me through comments and we'll talk. And, oh by the way, it was enormously helpful in explaining to my adult children and to family and friends who asked about the options available to me.   Very calming. . . to feel I had control of the information.

So, here's how mine looked.   Hopefully you can read it and hopefully it will help calm your fears.  My offer of help is totally sincere.  If you cannot read it, I can email it to you in PDF form.  Just ask.

Attitude

This little story was forwarded by my niece Suzanne, who helps me maintain my positive attitude and who accomplishes much herself with positivism. I cannot attribute the story because it came off the internet--I can only say I did not write it myself but I embrace its spirit!

Attitude

There once was a woman who woke up one morning, looked in the mirror,
And noticed she had only three hairs on her head.
'Well,' she said, 'I think I'll braid my hair today.'
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror
And saw that she had only two hairs on her head.
'H-M-M,' she said, 'I think I'll part my hair down the middle today.'
So she did and she had a grand day.


The next day she woke up, looked in the mirror and noticed
That she had only one hair on her head.
'Well,' she said, 'today I'm going to wear my hair in a pony tail.'
So she did, and she had a fun, fun day.

The next day she woke up, looked in the mirror and
Noticed that there wasn't a single hair on her head.
'YAY!' she exclaimed. 'I don't have to fix my hair today!'


Attitude is everything.

Be kinder than necessary,
For everyone you meet is fighting some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly.


Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain.


It's not what you gather, but what you scatter that tells what kind of life you have lived.

I take it all back. . .

Okay, okay, so ya got me.  Chemo IS a bitch.  Losing hair, not so much. 

Chemo has it's own clever little way of manifesting its charm, shall we say, on each individual.  It smiled beguilingly at me at first and seduced me into complacency.  The first three weeks were a breeze except for that hair thing.  I heard about a woman who completed the Hocking Hills Peletonia while on chemo.  Why not?  I am strong and if she can do THAT, a normal "human bean" like me can certainly do, like the normal stuff, you know?  I have no ambitions about a 100 mile bike ride through the hills in late summer, but normal life?  "No prob."

Second round, humm.  Feeling more tired than usual but that is to be expected, I was told.  Those 12 hour nights still feeling good, 3 hour afternoon naps feeling a BIT self indulgent, but what the hey?  Cancelled driving to exercise class and felt  like a wimp for not toughing it out, but in all fairness, I ended up in the ER that night with a zero white blood cell count which ain't good.  So, maybe calling off the aerobics was good judgment on my part?  Nice stay with the nurses,  and then back home.

Third round--Wham Sheezam! Holly mackerel, I really didn't see that coming. In addition to the chemo treatment (which always goes smoothly without the feared physical side effects for which it is reputed), my doctor treated me to a special immunity treatment for slightly more than the cost of a thousand margaritas at happy hour.  "Expect a little achy-ness", they said.  "Tylenol, if you need it." So, again, "no prob", and I won't have to re-visit those 14 doctors in the ER again.  Cost effective prevention, I thought.

Well, my posture was very good for the next four days!  Virtual traction, trapped in my own body, and as straight as though I was strapped to a native American traverse device.  Imagine Arte Johnson on "Laugh In" shuffling along with  his trench coat and cane--

 or riding his trycicle and slowly, so   s l o w l y ,   toppling  over sideways--muttering the entire time.  Or a cardboard cutout of me hovering rigid over a chair to watch a movie.  Put little round soles on the bottom of my shoes, stand me up, have yer fun wiith me tapping my forehead and and watching me go BOING!  BOING!  BOING! back and forth at your touch.  Yep, that was me, folks, and some of the muttering was "not for prime time"!  Well, actuallly most of it. . .

But, darn it, you don't know what you've got 'til it's gone, and flexibility is HIGHLY underrated.  Try sitting without bending your knees.  Try drinking coffee without bending your elbows. Try putting on shoes without bending your waist or your fingers.  Thank goodness straws do bend!  So, take a moment and kvell in those lovely joints:  knees, fingers, elbows, and waist.  Try 'em, use 'em, enjoy 'em.  Appreciate them.   I am bending  once again, and it feels soooooooo good.

This little adventure with chemo is a lesson in appreciation. I was a "straight up" cowgirl for four days, doncha know it. I would have willingly taken the Tylenol for the price of drinking the thousand margaritas if they had told me then what I know now.  I wonder how riding 100 miles on a bike without bending your knees would actually work . . .humm, not so much.

Well, I'd rather concentrate on Margaritaville.  Bottoms up!  Look at that lovely elbow bend!