From Brother Joe

The news came to MJ at the Pittsburgh airport on the way to Boston for a well deserved vacation. My family and I were so looking forward to seeing Tim and MJ. I had painted MJ's name on the back of the comfy chair. We were ready!

Any normal person would have just turned around and gone home. But MJ was coming. And as usual we would have to listen to her bitch and moan the next 6 days. Like she isn't enough high maintenance already!

MJ arrived in Boston and ignored everyone. My Son Joey was so looking forward to seeing her, and she walked by him at the house without even a hello. He was devastated. She then proceeded to kick Callie the Lab in the head. This was only topped by Timmy taking a photo of her and she grabbed the phone and thru it in the lake. This was going to be a great week. Anyone have a spare I-Phone for Uncle Tim to borrow?

Ah - but maybe I am confusing this with how I would have reacted to the news. In fact the hug at the airport was so sincere and outward, with the incredible positive attitude emanating, I knew we were in for a wonderful week. And as it turned out, between Timmy's 10 pound grape leaves, and a small glass of Scotch here and there, it was as usual inspiring to see the amazing fight and attitude MJ consistently demonstrates. I am sad to say we see her off this morning, but all our love and prayers are with her and her family, and in our hearts we know she will again conquer this next challenge with the heart of a lion, continuing to earn the admiration of all she comes in contact with.

Here we go again

Quiz;  ONE OF THESE THINGS JUST DOESN'T BELONG HERE:

(a) France  (b) Chicago (c) navy webcasts (d) teach at CMU (e) chemo (f) launch Negotiation Academy (g) coach Sam and Zoe's mock trial team

If you guessed (e) you are correct in theory but as it turns out next Friday I will start chemo again.  That makes this a trick question. So, I've had a recurrence after 21 months of remission. The time in remission is predictive of how well I will respond to chemo and 21 months is a good number.  I am ready to take this on and my family has my back.  Yes, you could start your prayers any time now.  As a reminder here are my favorite ground rules:

1. Everyone wants to know what they can do.  The best thing you can do is to keep it normal- You don't have to avoid any discussions but know that I will talk about cancer when I need to.  Also know that I am interested more than ever about what is going on with you that doesn't involve cancer. That's how I keep my balance.
2. Cancer is not the minimum standard for complaining. If you had a lousy day I care and want to hear about it.  Please don't start the sentence with " I know it's not as bad as what your are dealing with" per item #1. 
3. As you can guess, I am very direct and honest about what's going on. 
   When I appear cheerful and strong you can trust that it's real  because I will also let you know if it's a bad day.  I will also let you know if I need something - I learned in round #1 that it helps everyone if I just ask for what I need.
   
4. Most days will be good.  I've beat this before and plan to beat it again.
5. My friends and family are critical to this journey.  Don't worry about being intrusive.  I won't answer the phone if I don't feel like talking.  Write anything on the blog that you want.  I love reading what you say.
6. My cancer is a chronic disease- there isn't a cure.  This recurrence was predictable (but not welcomed)  and will likely happen again if we play the odds.  We are all in this for the long game-  
7. I am grateful that you are all in my life.  Please know that having an army of the strongest and fiercest women and men in the world is very comforting.  It's more than comforting.  It's awesome. 

My brothers and I spent the weekend together in New Hampshire polishing off 1.75 liter bottle of single malt scotch. It was purely medicinal. 

What's in a year

Valentines Day is the one year anniversary of my remission. This calls for a very good bottle of champagne. My numbers are still good (CA 125 under 6) and there are days at a time when I actually forget that I have cancer. (FYI cancer is always a present tense phenomenon). My reminder is the half day I spend at MaGee Women's Hospital once a month for my Avastin treatments which I will do forever. I expect this forever to be a very long time.

There is no greater perspective building exercise than spending time every month in a chemo room. Every time, without exception there is a poignant exchange, usually with strangers, who all share a common enemy. It's amazing actually. Last time I sat next to a woman who was having a CT scan to determine if she was in remission; she had been in and out of remission several times. We held hands in the waiting room and talked about the possibilities. Comfort words must be selective- you can never say "it will be OK" or "I'm sure you'll be fine" because those well meaning comments are not realistic to cancer survivors. Instead you say "I will hope and pray for good outcomes" or " I pray that you have the strength to deal with whatever news you get". Thank you all for knowing just what to say in your posts and in your cards, and calls and visits. I can only hope you know how vital you were to my journey and my recovery.

I am busy helping two amazing teenagers navigate through middle school and high school. Zoe will be going to Sam's school for high school this fall. They are both excited to be at the Science and Technology Academy together. Zoe is a math and science girl so this seems to be a good fit for her. She loves computers and has expressed an interest in the computers and connection concentration. Zoe is taking an African dance class at Dance Alloy and loving it. She is an expert computer gamer and her current favorite is kingdom hearts. She speaks of it in a language I don't understand. She works with the friendship circle as a volunteer and as a special friend and Sam volunteers as well which enhances their lives and the kids in the circle.

Sam will get his driving license imminently and his words to you are "if you don't like my driving, stay off the sidewalks". I believe his grandfather is responsible for this wisdom. Pap pap we miss you and can't believe it is two years since you've been gone. You remain in our hearts and I still reach for the phone often to call you to share the day's joys and sorrows.

I am teaching negotiations for the Heinz College at CMU and enjoying it tremendously. My students are wicked smart and diverse in so many ways- age, profession, nationality, gender, it's all you could ask for a negotiations class when diverse perspectives are often the key to success. I am working hard to raise $250K to launch my negotiation academy at CMU. Meeting with corporate, foundation and individual donors to meet this goal. All ideas welcome. I remain convinced that this is the intervention that will truly make a difference for women at all ages and stages. I am also coaching the mock trial team at Sam's high school and we won our first round of competitions. We are very proud and the young counselors and witnesses have achieved a proficiency that they didn't think was possible. It is a satisfying endeavor for all involved.

Jonathan continues to be a force of creativity and persistence. He is designing a pilot for pharmaceutical companies to move our successful webcast model to other industries. It would seem the right fit for all his talents and a good timing to appeal to Pharma. Jonathan's work is truly spectacular. He does Bikram yoga many times a week which keeps his back and attitude nicely adjusted.

Brother Tim lives a couple of blocks away which couldn't be better (well maybe next door). We love his special friend Laurie and her son Peter and enjoy all the time we have together. We will all be in Florida at the end of March with brother Joe and family to watch niece Catherine play softball. Joe and I now in Florida to help out the octogenarian aunties who we love so much. Aunt Dot (age 89) is very compromised cognitively and Aunt Margaret is beyond heroic in taking care of her. These women have known each other for over 70 years! We helped Margaret (age 87) get an ipad yesterday in an attempt to catapult her into the 20th century. Today is the tutorial; it should be interesting. She still can't believe that you can get a newspaper electronically.

Well here's a pause to celebrate life, friends, family and making sure that in our time here we make a difference.

A Long Hard Journey

For all of us things just seemed to get worse and worse. We each tried to be hopeful but there was little cause for hope. We reached for dignity but found only humiliation. It seemed like so long ago when things were good.

Then something magical happened- something we never could have imagined. Victory was upon us. In the summer of 2011 our Pittsburgh Pirates are one game out of first place. We'd been losers for so long we didn't know how to act like winners. PNC park, once a ghost town, is now packed with delirious fans. We can't believe our good fortune.

Perhaps a little history would explain why this is so exciting. In 1876 the Pittsburgh Alleghenies played in the city's first professional baseball game held at Union Park. The Alleghenies entered the National League on April 30, 1887 In 1890 the Alleghenies were renamed the Pittsburgh Pirates after "pirating" second baseman Louis Bierbauer away from the Philadelphia Athletics American Association team.

Barney Dreyfuss, owner of the defunct Louisville club, acquired controlling interest of the Pittsburgh Pirates in 1900, bringing 14 players with him, including future Hall of Famers Honus Wagner and Fred Clarke. The Pirates won their first National League pennant the following year.

In a World Series showdown between two of baseball's premiere players - Honus Wagner and Ty Cobb - the Pirates defeated the Detroit Tigers, 8-0, in Game Seven to become World Champions for the first time. Their second World Series win came in 1925 with a win over the Washington Senators.

The Pirates then suffered a long drought until 1960. In one of the most memorable World Series in history, the Pirates were defeated by more than ten runs in three games, won three close games, then recovered from a 7-4 deficit late in Game 7 to eventually win on a walk-off home run by second baseman Bill Mazeroski - making them the first team to win a World Series on a home run. The Pirates struggled for the remainder of the decade, however, despite the addition of Roberto Clemente, considered by many to be the greatest right fielder in baseball history.

Slugger Willie Stargell joined the Pittsburgh Pirates in the late 1960s. Three Rivers Stadium was an important part of Pittsburgh history and has celebrated many Major League 'firsts' including the first ever night World Series game during the 1971 series (which the Pirate's won) and Roberto Clemente's 3000th major league hit. On December 31, 1972, Roberto Clemente died in a plane crash while accompanying a shipment of relief supplies to the victims of an earthquake in Nicaragua. The team finally managed to pull itself back together, however, even adopting "We Are Family" as their theme song and went on to win their fifth World Series, in seven games, on October 17, 1979.

Then there were 17 long, long years when we lost ball games and had losing seasons over and over again. We thought it would never end. It did. We are winners again.

Another bit of good news. My CA 125 is below 6. There were high fives all around at MaGee Hospital today- it's been a remarkable recovery. I am getting used to avastin- still a bit stiff sometimes with some aches and pains that come and go. All and all it is tolerable and life is great.

Zoe is home from camp and has an exciting summer planned, including a one week Spanish immersion sleep away camp. Sam is working at the University of Pgh Cancer Institute Summer Academy. He is learning tons and meeting interesting people. Jonathan is finishing his work with WQED, and on to other projects. I am continuing my work on building the negotiations institute. We are hanging out often with brother Tim and grateful to be together and healthy and looking forward to more Pirates victories. GO BUCS.

A Happy Anniversary

A year ago today I was diagnosed with cancer; time flies when you are having fun. It has been a hell of a year.

I am in remission and plan to stay here for some time.

Statistically there is a 70% recurrence rate with my diagnosis so I am on Avastin which inhibits angiogenesis, the process by which new blood vessels develop and carry vital nutrients to tumors. It's ironic that I got through chemo with relative ease (emphasis on the relative) but the avastin is causing me some significant side effects, the most profound of which is muscle pain.

My oncologist suggested tylenol (are you kidding me? Do you really think I needed you to suggest tylenol? ) Meanwhile I'd already tried reiki, acupuncture, chiropractic, massage, yoga, tylenol, advil and some stronger pain killers. Initially nothing seemed to help but I've maintained the reiki and massage and I think the muscle pain is getting slightly better.

I switched to another oncologist but my options are limited. My plan is to give the avastin another month and see if the side effects are tolerable. If not, I'll switch to a maintenance dose of taxol which means I'll lose my hair again. Too bad since it is not only cute but hardly gray. Who could have guessed that outcome? I've been dyeing it for so many years I had no idea what color it was.

I had an outrageous phone call with Genetech (who makes avastin) who refused to talk to me because I was taking the drug "off label". The RN treated me like a criminal. Avastin has not yet been approved for ovarian cancer ( I reminded her that there are clinical trials going on now). The RN, who was not the most resourceful person I've spoken to recently, flat out refused to give me any information. I assured her that I was not buying the drug on ebay and was using it under a doctor's orders but she was not persuaded. Apparently my internist didn't have much better luck when he called them. Both Genetech and my oncologist would prefer I keep my side effects to myself.

So a year later I am building a negotiation institute for women at Carnegie Mellon University, working on a fascinating gender research project with a group of remarkable women that will likely be a book, teaching negotiations at the Heinz School at Carnegie Mellon in the spring and getting back up to speed with training the navy lawyers through my company Trial Run. A reinvention is in the works. I am grateful to be here, astounded at my good fortune to have a most beloved circle of family and friends who inspire me and teenagers who keep me humble. More to come !

Remiss in remission

It's been a while since my last post. Remission is another interesting journey captured well in the book I'm reading called Dancing in Limbo. Life without chemo is a serious quality upgrade. It means that I can build my strength and stamina and just keep on moving forward. Mostly I don't care how long it takes. Nice not having to battle the ice and snow to take my power walks with Kristin, Nan and canines. Also back to Bikram yoga and am humbled by each class.

As you can see, I have abandoned my wig and scarf for the Annie Lennox/ Sinead O'Conner look. It feels totally great. Sometimes it's a bit too much reality for people but I figure they'll adjust.

Sam shaved his head for a swim meet and we are looking very much the same as a result. He's slightly ahead in our contest to see whose hair grows back first but his hair lacks the distinctive platinum blond quality that mine has. He'll lose style points for that. Zoe's hair is full and tangled because she prefers not to comb or brush it. "I like my hair wild just like me" she reminds me.

Both kids are swimming for a neighborhood swim team; Sam with enthusiasm and Zoe under protest. J is working with me on Navy webcasts and still working with WQED. We are all well and looking forward to an uneventful summer. I am rebuilding my professional life, slowly, carefully and with renewed purpose. More to come on that later. We are looking to have the remission party the first weekend in June. I promise to keep you posted as plans evolve.

Valentine's Extravaganza

As I was anxiously awaiting my CT results on Valentine's Day, I emailed my oncologist to see what he knew.
His email response: "CT scan looks good" .
I stared at the words and wondered what he meant- Is my tumor smaller, gone, doing the polka? I was looking for words like "clean", "no tumor" "cancer took a hike". I had no idea how to interpret this vague message from Dr. Gloom and Doom. Oncologists are not known for their positive outlook on test results.

I write back "Am I in remission?"

He responds "Yes".

WOW!

So we have arrived a the place I have imagined for so long;
a new phase of this incredible journey - no more chemo (for a while) and back to our version of a normal life. Words like unbelievable- miraculous-and finally come to mind. I am mindful that your support has gotten me to this moment. I remain grateful and energized by your posts and calls. We are celebrating and planning the remission party. Hope you can be there.

WOW

Look at what chemo did to my hair!!!

When they said my hair would grow back differently who knew? Funny how black and gold just works for everyone. Or perhaps I should say, most everyone. I wore this to the grocery store today and people were taking my picture and asking if they could pose with me. My other wigs were much more expensive but never got nearly this much attention. A few hours till game time and the burg is in fine form. There is of course a two hour delay for school tomorrow.

Thankfully I am all done with my scheduled chemo! Sam came with me for my last treatment which was the perfect way to wrap up this phase. My CT scan and other labs are scheduled for valentines day with results soon thereafter. If the CT scan is clean then we start planning the remission party. If not, I've signed up for 3 more rounds (9 treatments). I am very optimistic.

Sam did an amazing documentary for his science class on the effects of attitude on outcomes for cancer. He did research and interviewed me, my oncologist, my chemo nurse, a behavioral scientist and a cancer researcher who is also a breast cancer survivor. We both learned so much. We started with the view that attitude must effect outcomes and we wanted to believe it was true. We realized how this approach could also suggest that people who don't make it lacked the "fighting spirit" or right attitude. The medical literature includes studies examining the possibility that positive characteristics like optimism, spirituality and being a compassionate person are associated with good health.

According to Richard Sloan, writing for the New York Times, "there’s no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association between personality traits and the likelihood of developing or surviving cancer. Cancer doesn’t care if we’re good or bad, virtuous or vicious, compassionate or inconsiderate. Neither does heart disease or AIDS or any other illness or injury."

It does seem that attitude and behavioral interventions can affect how one tolerates surgery and treatment. I know that it has for me. I also know that my consistently positive attitude is directly related to all the support I have received from Jonathan, my kids, brothers, extended family and friends. I have also taken advantage of traditional and nontraditional resources (yoga, reiki, meditation) which have helped me stay positive. I remain grateful for my miraculous recovery.

Will keep you posted.

A funny thing happened on the way to chemotherapy

I seem to spend quite a bit of time at Magee hospital between chemo and labs. I meet the most interesting people. Thursday I was in my friend Dave's line for labs and I heard him offering comforting words to the lady ahead of me. He's got a heart the size of Texas and was once again going above and beyond in the kindness and compassion department. I was surprised to hear him say "right behind you is MJ and she's a cancer survivor with a great attitude." The woman named Bee had tears running down her face as she tumbled into my arms. Bee told me that she has just been diagnosed with cancer. I heard her story, understood her shock and did my best to offer encouragement and comfort. She has no health insurance despite the fact that she works full time as a chef. She's been having symptoms for 6 months but was couldn't afford to go to a doctor. My heart broke for her. I can't imagine how it feels to worry that you cannot afford the treatment that will save your life. We talked for a long time. I can't stop thinking about her. Are you listening Mr. Boehner!

Today while I was in my chemo bed I met Terry who was getting a shot right across the way. She's in treatment for breast cancer and we starting talking. We were joined by my friend Chris and her husband and daughter. Chris is also in treatment and had lost her hair since the last time I saw her. We had an impromptu cancer party! Chris looked great in her hat today and Terry was wearing a wig that made her look very glamorous. Terry told us that for New Years Eve she shaved her head, made herself up, wore great earrings and her bald head to a party. She said she decided that she loved her bald head and it was empowering to show it off. I am constantly amazed at the courage and inspiration that I see in that chemo room.

Kimberly joined me today, and kindly ran an errand for me in the middle of the chemo. Sisters in law Betsy and Pola will join me tomorrow for Act 2 of 3 for what I hope is my last round of chemo. Today my CA 125 was 11, internal exam was normal, and Krivak is optimistic that I will get a clean CT scan. If so, we start planning my remission party! If the CT scan is not clean I've signed up for 3 more rounds of IP chemo which will take 9 weeks. I'm ready for whatever happens.


We had a fantastic visit from niece Catherine last weekend. We subjected her to watching Mad Men, comforted her when the Patriots lost to the Jets and totally enjoyed hanging out with her. She's smart, witty, ready to try anything (including yoga ) and we look forward to more time with her soon. .

Perhaps you've heard that the Steelers are going to the super bowl. My favorite email (thanks to the Ziff's ) was a picture of the Steeler's jet with a caption that said "This is the only jet going to Dallas". I was wearing my yinz & yangz tee shirt, with my Steelers do-rag and my sweatshirt that says "70% of the earths surface is covered by water, the remaining 30% is covered by Polamalu. We are happy here in the burg on the stairway to 7 super bowl titles. Yes, the hospital was awash in Steelers paraphernalia today and 50% of the employees were in Steelers jersys. Only in Pittsburgh!

5/6th of the way there

I received many cards hoping that 2011 would be a "less interesting" year but our son Sam turns 16 tomorrow so this is very unlikely. I see visions of car keys, girlfriends, even more independence and I'm breathing deeply. With two teenagers in the house, life is filled with possibility, imminent catastrophe and negotiations. I knew my meditation practice would pay off beyond cancer.

Today Marlene joined me for the final act of round 5 of chemo. Of course the Women's Cancer Center at Magee was an homage to Steeler Nation. Terrible towels, black and gold ribbons and Steeler accents were everywhere. I was looking for a sign that said "Cancer schmancer, the Steelers are in the playoffs".

My last treatment is January 31th and CT scan will be the third week of February. I will start a year of evastin soon thereafter. This treatments should be easy to tolerate and my hair will grow back. Christie's wants my false eyebrows and wigs but I'm holding out for a better offer. Rumor has it that Troy Polamalu is interested.

The psychology of remission is more challenging than I would have expected. Since my diagnosis all I could think about was that I wanted to get there, stay there, live there and put this behind me. But, I have cancer and I know that often it does not go away permanently. It means living positively with a unique brand of uncertainty. More as I ruminate further on the problem that I hope to have soon.

In the life goes on column, I am assisting the mock trial team at Sam's High School which is the brand new Science and Technology Academy. It's an inspiring group of freshman and sophomores (his school only goes up to 10th grade presently) who compete against high schools with juniors and seniors from across the state. This weekend was their first competition and they made us all proud. Sam received an outstanding lawyer award and as a result has decided that cross examination is his preferred method of communication. This too shall pass.

Zoe seems to be navigating middle school with the appropriate amount of angst. She loves science and math and wants a career that allows her to "do random and creative things whenever she feels like it". Sounds like she will work for Google or become an heiress. Jonathan is enjoying his work with WQED and we are putting the finishing touches on the promo for our documentary.

For whatever reason, December was not productive for me. I needed more rest, surrendered to it and mostly contemplated what the next phase of my life would look like. More to come as the narrative emerges.

Thank you always for your cards, and calls and visits and support. Niece Michele's visit from Spain was so nourishing and she made it as my chemo buddy without fainting. Niece Catherine is coming this weekend and we await a visit next week from grandma Lenore and sister's in law Betsy and Pola. We are all making huge and unimaginable strides together.

17

More good news. My cancer markers continue to drop. Last test result was 22 and we are now at 17. I had more energy after chemo this week than usual and am hopeful for a healthy and energetic weekend. After next Monday's round we can cross off 4 out of 6 IP treatments. My oncologist is talking about a year of evastin when I am done but the schedule and side effects should be much easier than what I've already been through. Bring it on!

We generously provided snow and cold weather for Ann and Karen's visit from California- What a joy to have them here. I went to Florida with my brothers last weekend to spend time with my 88 and 86 year old aunts who we love dearly. Helping them through some of life's tough decisions reminded us that aging is not for sissies.

Looking forward to Jonathan's brother and family arriving on Christmas day and then to the Joseph wedding on New Years with more family. Sending peace and joy from our household to yours.

Cosmopolitan- special chemo issue

Can you believe that Cosmo approached me to do this issue? You have to hand it to Cosmo being up on the latest scientific information. I mean, who knew that they could use your horoscope to chose the right chemo treatment? In the interest of full disclosure there were a few faces of cancer that didn't make it on the front cover- like the Groucho Marx mask I had to wear until I discovered these fab false eyebrows. Thanks here to Linda M, my trusted adviser on accessorizing. When I put the first pair of false eyelashes on upside down I knew that false eyelashes were not in my future. I seem to lack the necessary technical expertise. Any and all advice welcome.
(Cosmo cover by Jonathan Rest.)

Today was the half way mark for the IP treatment. Linda H provided wisdom and comfort during my chemo and homemade sauce and pasta for dinner. So many thanks.

I spent most of Thanksgiving curled on brother Tim and Kimberly's couch knowing that I didn't have to cook or clean. My only effort was in eating the very fabulous meal that they made for us. This approach to thanksgiving appeals to me.

This week is busy with documentary projects, going to Sam's 10th grade class to talk about cancer (they are studying it in science class), teaching an all day module for the the Women Executive Leadership Program on communication and negotiation and then waiting for Karen and Ann to arrive from Ca. for a long weekend.


We are now open to the healing light of Chanukah- I attended David Goldstein's amazing chanting circle with Debbey D.on Sunday at Temple Sinai. Here is the phase that most transformed me:

Al hanisim, v'al ha-nifloat, v'al ha-t'shuot v'al hamilchamot

For the miracles and the wonders, and for saving grace and for the battles.

Chanukah, the festival of lights is sometimes about finding light within the darkness. These symbols are especially powerful this year. Wishing you healing light and comforting light, joyful light and most of all shalom!

Mary Ellen and Dave

I take many trips to Magee hospital for Dr.'s visits,labs or chemo. I enter the hospital knowing that each visit could be either routine or daunting. As I enter into the lobby my step quickens because the first place I go, no matter why I'm there, is to the windows where Dave and Mary Ellen sit. I met Dave and Mary Ellen because it is their job to process my lab documents. They interface with the public all day with grace and resourcefulness. For me they are an indomitable source of energy, encouragement, kindness and inspiration. They can transform a routine or a daunting visit into an uplifting experience just by the way they greet me, express their concern about my progress and tell me how great I look (even when I don't). They have given me strength and courage on days when I didn't even know I needed it. This Thanksgiving as I think about all for which I am grateful - Dave and Mary Ellen will be on the list.

More reasons for gratitude- My cancer marker (CA125) has dropped to 22 (35 is normal and we started at 574). My oncologist described it as "miraculous". He says he considers me in remission but we are still waiting for a normal CT scan. Treatment course is as follows: continue IP (10 treatments left with the last treatment on Jan 31). Next I will have 5 treatments of Avastin three weeks apart staring in mid February. Avastin is an experimental drug which destroys the blood vessels that feed the tumors. Dr. Krivack believes that it will soon be standard protocol for ovarian cancer and according to the chemo nurses the side effects are minimal. That puts us at the end of May for treatment so I'm tentatively scheduling my remission party for sometime in June. More details to follow. Tim and Kimberly threw us a celebration dinner last night. This news is extremely encouraging. A close second was the Steelers victory over Oakland on Sunday. Thanks to Kristin today for round two as my chemo buddy.

I wonder if my CA125 developments had anything to do with the stern conversation I had with G_d at the synagogue on Friday when I berated her for not sparing my eyebrows. I pointed out that I had been a damn good sport about losing my hair and I knew that eyebrows were within her discretion. I let her know in no uncertain terms that I was due for a break. Looks like she heard me.

Update: Thanks to my new false eyebrows I no longer look like an egg.

Next post will profile my new wig and brows!

Easy Catch

On weekends as a family we would often watch sports on TV. As a matter of fact, for a while the Tocci kids believed that the only programing available on TV was sporting events. We would watch the great players, Willie Mays, Lynn Swann, and Ron Swoboda effortlessly excelling in their respective sports. Once in a while we would see that incredible play, the diving catch in the bottom of the 9th to save the game, the tightrope walk in the end zone to win in overtime, and we could predict what our Dad would say next.

"That was an easy catch. He just made it look hard".

As I read MJ's posts, seems this cancer is not so hard. Yeah, OK, a few new wardrobe changes, a few days of being cranky (more that usual), big deal. She almost makes it easy to forget the physical and phycological issues she has had to deal with over the past many months. The point is Dad, MJ got the quote wrong.

"That was a hard catch. She is just making it look easy".

Along those lines, I did want to mention that living in Boston the past 20 some years has been educational. Yes, the Republicans fared reasonably well in most states. We got Barney Frank again.

In Beantown we received a visit from Uncle Tim last week. Wouldn't you know he arrived just before the gametime when the Steelers were playing the New England Patriots. The Terrible Towel Toting Tocci came into town with guns blazing looking for a bet. We here are used to the simple life, and when he sugested a wager on the game we were not accustomed to or prepared for that type of competive confrontation.

The line in the paper was favoring the Steelers by 5. Just before game time we received a call from daughter Catherine. She informed us that Timmy had called her at school earlier and requested a bet, and she was given the Patriots and gave up the 5 points. I was upset and told her she got it backwards, the line should have been her getting the 5 points. My poor daughter did not do Pap Pap proud. She lost on the first tee, and was take advantage of by an older and wiser trusted relative. I told her that the Patriots looked so bad against Cleveland the prior week she mind as well pay up early.

She assured me not to worry.

Well the Pats crushed the Steelers, and when I spoke to her the next day to discuss investment of her winnings and ask her how she knew, she informed me that the Patriots were 24 and 1 in games following a loss in the prior week. It was in the bag from the get go. She said...

"That it was an easy bet. I just wanted to make it look hard".

These Tocci women all make Pap Pap proud.

Shout Out For Veterans Day

I am a passionate liberal democrat who loves Veteran's Day! This is not an oxymoron.

Today Sam and I went to the cemetery to visit my parents as my dad was a WWII vet who always thought it important to honor our veterans and celebrate this day. Dad enlisted in the navy at 18 and was an electrician on the USS Carr, an aircraft carrier in the Pacific. He was of course captain of the ship basketball team. Uncle John parachuted into Normandy, Cousin Lee served in Vietnam, Tom flew helicopters in Panama and brother Tim flew P3 Orions and served in the first gulf war.

As if we were in a Normal Rockwell painting we happened upon the Blairsville Veterans Day parade. Blairsville, population 3500 is 43 miles east of Pittsburgh in the Conemaugh River Valley with the Conemaugh River forming 180 degrees of the town's perimeter border. It was a mill town connected by a railroad stop to the coal mines. It is also the home of my maternal ancestors and where my parents, maternal grandparents, aunts and uncles are buried except Uncle John and Aunt Mary Jane who rest in Arlington Cemetery. The parade was spectacular and the enthusiasm of the spectators equally so. It included the Blairsville High School marching band, baton twirlers, volunteer fire department, girl scouts, boy scouts, and of course veterans from several wars who walked or drove down main street in Blairsville. I cried as I cheered and waved each veteran on and cried again when I heard the national anthem and saw the vets proudly put their hands to their hearts. I remain haunted by how badly our Vietnam Vets were treated upon their return home and I felt a surge of patriotism watching these vets marching - old, young, healthy, fragile in their assortment of uniforms. Most of us can't appreciate what they've done for us or the sacrifices they've made. The notion that we liberals aren't patriotic and don't care about Veterans is pure fiction. So many of us care deeply and appreciate greatly what our vets have done for us and our country. Thank you veterans with a special shout out to Dad, Uncle John, brother Tim and cousins Lee and Tom for your service to our country. Thank you dad for helping me understand how important it is to say thank you on this day.

It was a glorious day at the cemetery, 70's, sunny with color still in the trees overlooking the valley as Sam and I sat on our yoga mat telling stories about mom, dad and the entire family assembled there. Our memories are vivid and this is a way of keeping them so. I really miss them. They taught us how to be a family and how to be there for each other and I have been a recent beneficiary of what Jackie calls our mighty army of cousins. There is comfort in knowing how much of all of them lives on in us.

Sam selected the music for the trip and we sang together reminiscent of our family trips to Blairsville when the 5 Tocci's sang in 4 part harmony. We asked mom to just mouth the words. Gratitude is the watchword for the day.

We plan, god still laughs!

I hate it when things don't go the way I plan them! I expected a down day from chemo last Thursday and then planned to pop pack into the swing of things by Friday. I had also planned a normal weekend which included attending the Women and Girls Foundation event Saturday night. Instead, Friday was a lousy day- I was tired and sad and had a cough that was keeping me from sleeping. Saturday was worse- especially emotionally and I couldn't go to the event on Saturday night which was so disappointing. I was just spent. It wasn't until Sunday that I was feeling any energy at all but I was still very depleted. My friend Batia put the best perspective on it when she called to say "I'm so relieved to hear that you are depressed- it you didn't get here once in a while I'd worry that you weren't calibrated correctly". She then reminded me that being the super human cancer warrior wasn't who I needed to be, especially all the time. So I put my cape in the closet and rode it out. My reiki session on Sunday helped tremendously and by Sunday night I was accepting that not being at the top of my game had to be OK.

As always happens, I wondered on Sunday night why I was dragging my friends with me to chemo and by Monday morning I was so thrilled when Marlene arrived at my door to be my chemo buddy. The time flew by and she was such an upbeat and positive force. I left the session feeling so much better than when I went in thanks to Marlene, a few steroids and Heather the world's best chemo nurse. This chemo session even came with catering and Marlene brought fabulous sweet potato soup. I have the most interesting friends- how lucky is that!

Had to cancel my business trip to LA this week which was disappointing but a recognition that taking care of myself is actually important. It's amazing how bad we all are at taking care of ourselves on so many levels. I'm learning, slowly and painfully that we all have to address this deficit or it comes back to haunt us later.

Connected with my friend Liz who is recovering from a stroke, my friend Linda who is back in chemo from a 12 year remission for ovarian cancer, and several other dear friends facing daunting medical or emotional obstacles. When my friends started to get sick- sometime in my forties- my father advised me that this was not an aberration but rather a part of life- He laughed when I told him that I was too young for my friends to be getting sick and cautioned me that I would face challenges too, no matter how healthy I felt then. "Don't be surprised, just deal with it as a part of life" were his words to me. I'm going to the cemetery on Veterans day to tell him how right he was.

The weather had been glorious and my daily walks with Kristin and sometimes Nancy with our golden-doodles in tow have been truly energizing. Watching the Steelers almost blow a 20 point lead last night was not energizing. Yoga with Stacy today was energizing; living with teenage mood swings is not always energizing. Life is rich.

Good numbers

Sorry I left you hanging after my last post- much good news to report. I went to Chicago for my first business trip to work with my dear friends Frank and Holly and the great folks at Latham and Watkins for their Advanced Trial Program. It was thrilling to step back into the game and still be able to play at a level that was very satisfying. The firm was beyond hospitable and the experience chocked up another "new normal". I passed on the evening activities and was in bed by 7:30 each night. I was sorry not to see any of my Chicago family but the evenings were destined for extra rest this time.

I feel great and am up to almost my former energy level. Just bought jeans (size 4 and 6)- been waiting for this moment for 20 years but I don't recommend this diet regimen. I am actually trying to gain weight which is way more challenging than I could ever have imagined. No- I'm not expecting much sympathy in this department.

I had chemo yesterday and have another one today at noon with reiki in between. My plan is that reiki will make the rest of this week easier. Still using reiki, yoga and mediation to manage both the physical and emotional side effects and will continue to use them well past my remission- they are now important ingredients for daily coping with whatever comes my way.

MORE GOOD NEWS: When I had chemo yesterday I got the results of my CA125 (cancer marker). When I was diagnosed it was 574 (astronomical) then last test it was down to 84 and NOW it is 34 (35 is normal but my oncologist wants it under 30). I was thrilled with this news. The internal exam was also normal which leaves us waiting for normal CT scan results. Last time there were still tumors present but they were shrinking so we have every reason to be hopeful that this trend will continue. The CA125 news together with the exam results had me in great spirits yesterday.

Kristin was my wonderful chemo buddy for a long day but then we did a quick turn around and went to watch Sam's friend Evan play soccer for the city championship- they lost but I remembered how much I enjoyed watching high school sports. Sam is joining the swim team and Zoe has started piano lessons (at her request!). Jonathan is in negotiations with WQED to produce middle school science training films for teachers. The work seems to be fascinating and will tap his many talents. He is very excited about this and we are so proud of him. We are working on finding funding for our documentary Changing the Face of Science which is about pathways to success for girls in math and science. My work with my favorite clients on Women's Initiatives in law firms is beginning to get back on track and I have really missed it.

Brother Tim still struggling with back pain which he refuses to complain about so I have to get the straight scoop from Kimberly his girlfriend. Keep him in your prayers as well- he could sure use some relief after his medically challenging year. He takes such good care of me and continues to be a huge source of support. Brother Joe keeps me laughing with the funniest emails imaginable. He promised not to taunt me tomorrow with election results likely to put him in good spirits and me booking flights to Canada.

Your support and prayers are working- keeping me sane and hopeful and energized. Many thanks for the meals and posts and emails and calls. I need them and appreciate them greatly.
Cheers
MJ

.5

On the eve of today's treatment I hit the psychological skids- I announced that I was weary of being brave, positive and being such a good sport about having cancer. I had even lost my desire to accessorize creatively and was stalking the house with my bald head. I had a stomach ache and a bad attitude and was dreading today's chemo. I wanted my total health back and I wanted it now!

My family met me halfway and gave me permission to be as cranky as necessary. Poor me was the theme of the evening. The problem was that my family kept making me laugh when I was determined to be miserable. It turns out that it is almost impossible to laugh and wallow in self pity at the same time. One of my mantras in life has always been "It's not what happens to you but how you deal with it". My kids had mockingly put that phrase to music long ago and pulling no punches sang it to me last night. That was the final blow and I was forced to end this foray into negativity. Jonathan and I watched Randy Pausch's last lecture last night. Jonathan took his class while at CMU. I watched the lecture again today. If you haven't already seen it, I recommend taking a look. It's 75 minutes long, and worth every minute.

Click here to see the lecture.

I'm not sorry I had this funk. Sometimes you have to visit that dark space as a reminder of how useless it is in moving forward. It's about facing fear in the positive rather than negative spaces and knowing what cancer can and can't take away from you. I'm sure I'll be there again, but not for a while.

We used to say in the Tocci family that humor was a combat sport. Jonathan, Sam and Zoe rose to the challenge in yet another example of their resourcefulness and love.

Today I finished the first round of the new regimen. Arlene was there at 6:45 with her palpable generosity of spirit. Any remnants of last nights sadness were dissolved by her mere presence. She sat with me while I mostly slept but I loved that she was there as a constant reminder that caring relationships keep us in a positive space. I have never feel alone during chemo and that has made it so much easier to handle. Susan, my meditation coach is helping me rewrite so many narratives around disease and healing. Not that anyone would chose this path, but there is much to learn from this if you are dealt this hand and I will come through this a very different person.

So we are half way there- 5 treatments down and 5 to go. 15 actual days of chemo left and then we see where we are- which we pray will be remission. The remission party will be grand- with Frank and Deanne playing Lady of Spain on the accordion. I'm sure Ed Stein will do a roast and the rest of you can begin thinking of how best to celebrate. I can only imagine.

Thanks for taking the first half of the journey with me- and I know we are all in this for the long haul. Having you on this journey with me is such a gift.
Blessings to all
MJ

Way better than expected

Sorry for the radio silence during the week of treatment- I was feeling good and waiting for the other shoe to drop- but it never did. Most of the worst symptoms of the cisplatin never appeared- most notably the nausea- I had a day a a half of profound fatigue (in bed for one of them) and then started recovering more strength each day and today am feeling just fine. Had some stomach discomfort (they do call this a chemo bath) but it was quite tolerable. I have one more treatment of IP taxol tomorrow and then the dreaded neulasta shot (for my white blood count) on Tuesday. The shot usually makes me pretty cranky for the next two days with joint and bone pain. I am considering more pharmaceuticals this time around since the advil hasn't been doing the trick. Then I have 12 days off til the next round. If you are keeping score, that would be one down and 5 rounds to go. We can do this!

I have my eye on a trip to Chicago on Thursday if I'm feeling up to it.....won't know until the last minute. Today is a glorious fall day- the sun radiating the colors in the trees. We are anticipating black and gold action later today.

I will be relieved to have gotten through one of these new treatment cycles so I can know what to expect and plan accordingly. The uncertainty is the hardest to deal with. All in all, the news is good and I'm declaring victory over cisplatin!

Tocci planning book signing

Today I wrote another chapter for my up coming best seller Cancer is not nearly as much fun as it's cracked up to be. Today was my first day of chemo for the new regimen but surprisingly it prompted a book chapter about the fun part of cancer- (or at least the silver lining).

First, my dear friend Denise picked me up at 7:15 a.m. to be my chemo buddy. The time flew by today thanks to her companionship; she put in a long day with grace, humor and enthusiasm for which I am very grateful.

Today's drug was one I'd already had in my usual port and tomorrow I start the IP cisplatin (the heavy stuff). Brother Tim is on duty tomorrow and he is picking me up at 6:45 for a 7:00 am appt. What would I do without him?

The Chemo nurses continue to be informative, attentive and kind. It's a reminder of the unsung heroines of the world who are doing great work, genuinely affecting people lives and not getting nearly enough credit for what they do. Meanwhile the NY Times chose to devote several pages in the Sunday paper to hate mongers- The real news is happening in the chemo room with these dedicated professionals going beyond expectations every day.

My new hospital friends continue to wish me well each time I see them. The people behind the counters give me high fives and words of support- they know my name and I know theirs. I got a hug from my rock star internist today who told me I looked great. This all makes such a difference.

Then I arrived home to two enormous surprises that knocked my socks off. Jan and Marya sent me a fresh orchid lei from Hawaii which I will wear to chemo tomorrow- What better antidote for strong drugs than this symbol of love and beauty around my neck? Thank you so much! There's more! I got a gorgeous fall (my favorite season) bouquet from niece Jax and fiance Brian with a stunning note that made me cry (which is very hard to do). I got calls, cards and emails from family and friends checking in on my status. Kristin was there for a walk and a trip to the farmer's market at the end of the day. I am overcome with gratitude.

This day of unrelenting richness inspired the chapter: Who knew cancer had such a big payoff?

The weekend in Chicago was a warm and joyful celebration of both Hannah's becoming a bat mitzvah ( with flawless and gorgeous chanting) and acknowledging the good fortune we all have as a fiercely connected family continuing to share the happiness and hardships of life as they come our way.

In a post shortly after my surgery we mentioned that it was difficult for me to take calls- that is no longer the case except when I am recovering from chemo. I do love your emails and posts but don't hesitate to call as well. Don't worry, if I'm not feeling well, I'll call you back when I'm better.

Keep those prayers rolling this week- I know that my parents are camped out in God's office "reminding" her to focus on my recovery :)

update: wore my lei to chemo- I was a big hit. Amazing how well a Steeler doorag goes with just about anything.
Much love
MJ