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