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.