.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

Tocci still strong despite Steeler's loss

I really am stronger and have more energy than I've had since my diagnosis- My CA 125 (which was once 500) is now in the 80's (We are aiming for under 30). I start a new round of treatment on Oct 11th about which I am keeping positive thoughts.

Karen came from California for the weekend for a short but wonderful visit. She said I was supposed to be sick but wasn't acting sick- I tried to fake it but she saw though me. Mimsy, Zoe, Karen and I had a fantastic girls weekend of cooking, baking and visiting.

Jonathan, Sam and Tim went away to Ohiopyle for a rejuvenating weekend of cycling and male bonding.

Ed Stein arrives from Ann Arbor for a visit tomorrow and Friday we leave for Chicago. Our spirits are good thanks to the good medical news and great company.

Tocci and Steelers have a good week on offense

Charlie Batch completed 2 50 yard passes last Sunday and the Steelers crushed Tampa Bay 38-13. It was a game of actual touchdowns, beautiful passes and that famous steel curtain defense. In a related story, Tocci got her CT results today and learned that she too has a winning offensive strategy. The report confirmed that her fluid and nodules (tumor) are both diminishing. This can only mean that her chemo charged offense is indeed crushing her cancer. In both instances, the fans went wild! The Steelers and Tocci intend to keep up the good work- GO TEAMS!
(Pgh Steelers do rag compliments of brother Tim)

Days of Awe (Days of Yuk!)

Several successes to report since our last post- Chemo was Sept 13th and I got my pleural catheter removed- I am no longer tubular! This means that the procedure to remove the fluid in my lungs worked and Jonathan no longer has to drain it every two days. I am minus one of my least favorite accessories.

This was my third and last treatment in the intra-vascular port with carboplatinum and taxol. Cousin Anita joined me as my chemo buddy. We arrived with tons of books and magazines- none of which we opened, because we had so much to talk about. The day after I was flying high from the steroids and attended the grand opening for The Science and Technology Academy. There were four speakers, the principal, the superintendent of schools, the president of the board of Ed. and a sophomore named Sam Rest. Yes, it was a moment of nachas and Sam's 2 minute speech was a big hit. The rest of the week was predictably filled with Yuk- I mostly stayed in bed on Wednesday and Thursday and then started re-emerging. Now I am back to walking at least a mile and am very functional in between bouts of fatigue.

Today Zoe turned 13! The teens and adults are now equally numbered and we've switched from a zone to man to man , woman to woman and man to woman defense. Zoe asked for Wii Resort for her birthday. In describing its signature features she listed "sword fighting and water boarding." Imagine our relief when we learned that it was in fact wake boarding. We didn't think Nintendo had yet completed the Wii Enhanced Interrogation Techniques game.

Next chemo is Oct 11 and now I start a new round of treatments. This one involves intra-peritoneal (IP) cis-platin- so I move to a different port and a different drug. There are 6 cycles of 3 treatments each (M, Tu, M and then a week off) so at least an 18 week process. Not sure what to expect- the chemo nurse says "it's a tough one" but two people who have had it said it was tolerable. Yes, everyone is different- they always remind us.

Pictures taken by cousin John Gray and Jonathan. Top photo is my beautiful niece Jamileh.
Notice my new scarf from Arlene and Linda which I wore to Yom kippur services. Those girls know their accessories.
I received a lovely book from Paul and Marlene, scarf from Vanessa Lee, scarf and perfume and spiritual seed beads from Leanne, hat from Laurie, chanting CD from Debbey - CD from Jen, all with tender notes and prayers attached. It felt like Hanukkah! So many wonderful cards- collecting the mail is now one of my favorite activities as is getting your emails and calls. We continue to enjoy your donations to Wheel Deliver as it allows us to have family meals without the shopping and planning on days when it's really nice not to have to do either. Thank you all.

The Tocci family picture below is missing niece Catherine who is adjusting beautifully as a freshwoman at Smith College. To say we are proud of her is an understatement of huge proportions.

Now that I am feeling better I am working on our documentary and re-emerging professionally on some important projects. Jonathan has become quite the yoga master and takes Bikram at least 5 days a week. I am inspired by his discipline and I am grateful each day for his care and resilience. We head to Chicago on Columbus Day weekend for niece Hannah's bat mitzvah which promises a wonderful reunion with the Rests, Gordon, Sauer, Banders etc.

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Love to you all,
MJ

L'shana Tova

Our wish for a sweet, happy and healthy New Year is turbo charged this year. Wishing powerful healing to brother Tim, Marilyn Knowles and Grandma Lenore. I am confident that this New Year will bring me wellness and perhaps some patience in getting there.

Ann Denz sent this wonderful New Year's prayer that I wanted to share with all of you

May you enjoy your apples and honey!
May you find it easy to give and receive
May you know when to surrender, and do so with grace
May you remember that some people's lives are parched dry... and be grateful for the abundance in yours
May you find beauty in unexpected places.
May you carry your loads with ease amid sweetness
May you learn and teach well.
May you move with as much joy and ease as you can
May your home be filled with fresh air and light
May your tense and angry times be short-lived...
so that you come back quickly to your comfortable ol' self
May you be startled and delighted by new beginnings
May you find your uniqueness
May you enjoy your friends and hear beautiful music
May you come to the surface for air when you need it
May you take exquisite care of yourself
And may everything that hurts you also be a little funny (This is my favorite one)
Have a wonderful 5771!!

I have chemo on Monday and cousin Anita will join me. Thanks to my meditation coach I have a new attitude about it. All week I've said to people that next week I'd likely feel pretty miserable. My coach reminded me that a new narrative was in order. So, I am looking at the chemo as the process that heals me and I expect to feel better next week than I ever have after chemo. Thanks to reiki, breathing exercises I hope to hold on to the positive thinking. Just reread your blog posts from the last blog and feel ready to take this on thanks to all of your amazing energy.

Yes, I danced at the wedding and even made my sister in law Sue cry when she saw Jonathan and I dancing the jitterbug. Brother Joe informed me that he had the orthopedic surgeon on stand by. It was a giant burst of family and the hard part was saying good bye. Then I remembered a phrase from cousin John "Don't regret that it's over, be thankful that it happened". I was enormously thankful to be a part of this gorgeous celebration.

Expecting a visit today from dear friend Frank from Hawaii (also a proud member of the "I beat cancer" club- which I intend to join soon). Friend Deanne from DC will join us too. Tomorrow morning we are doing a walk for ovarian cancer which should be very powerful.

Road Trip

Lab results today gave us very good news. We were planning on going to Erie this weekend for a family wedding but had to make sure my white blood count was high enough. The count was 10 (anything over 4 would have been OK for me to make the trip) AND my CA125 cancer marker test was down by 50%! We now have another way to measure that the chemo is working. Looks like our road trip to Erie, time with my family and cousins and brothers is just what the doctor ordered. We are thrilled.

I struggle with fatigue - Doesn't take much to make me really tired and old standards of productively have to be abandoned. Easier said than done. Kristin has me waking almost every morning and this week we clocked 2.5 miles as our high and 1.2 miles as our low. We are very proud of ourselves. I usually take a 2 hour nap when I get home!.

Always trying to find that new normal. I am reminded that my body is working hard to fight this disease so the fatigue is to be expected. I went to a support group at Gilda's Club, another session with my meditation coach and a chanting circle at Temple Sinai last week. I am collecting tools to manage both the physical and psychological challenges that come with this disease.

Here is my scarf look- gorgeous silk scarf compliments of brother Joe who brought it back for me from China. Scarf tying tutorials upon request. As always, thanks for your cards and your posts, your prayers and your unrelenting care and concern- as you can see- it's working!

Missed and Missing

We will miss this summer as it fades into Autumn. It been a year of many events, good and bad, and I wish we had the opportunity to alter a few. Tim is missing his old hip as well as a few inches of arteries in his chest. It’s great to see him on the mend in ability and attitude. His winter goals include dogsled races where he will be pulling the dogs. We so dearly miss Pap Pap, but know his inspiration and strength lives on and gets us thru the day to day challenges. Just when we thought the storm clouds were passing , we received the news on MJ, which as it turns out provided another opportunity for her to demonstrate how an amazing attitude and optimism can slay any dragons. We look so forward to seeing her very soon, and are excited that she will be joining the Asper clan for the celebration of Kelly’s wedding this weekend in Erie PA.

We miss the wonderful visit we had from Sam and Zoe, but sadly we did need to return them as their Mom and Dad missed them tons. Speaking of tons, as a result of the Sam and Zoe visit we seem to be missing 12 boxes of Mac & Cheese, 11 Titleist Pro V’s, 10 quarts of Ice Cream, 9 Callaway X18 Irons, 8 cases of soft drinks, and our Pittsburgh BB marksman shot the partridge out of the pear tree.

Against the advice of Uncle Joe, the kids took a boat ride with Uncle Tim, who encourage them to participate in some questionable activities. Zoe relied on Sam to hang onto her by her life vest. Unfortunaltely it was a little too big!

When Zoe “surfaced” she promised to be more careful and asked cousin Catherine to watch out for her going forward, so they committed to milder activities such as a gentle game of jetski rodeo. If Mom only knew!

As of yesterday we are also missing Catherine, who felt the need to be off to Smith to keep up with the Jones’.

Ta Ta for now, its time to prepare for a weekend that we wouldn’t miss for anything. Love yunz, see you soon!

Down for the count

Nobody promises you symptom free chemo so today is my day to be down for the count. I am relieved and thankful that brother Joe suggested that the the kids stay with him til Monday - they will have a much better time in Boston and New Hampshire while I get better each day. Added attraction that Tim is on his way to Boston, so I know the weekend will be grand. Much gratitude to my amazing family.

This round is still better than the last one where I couldn't keep food down for 4 days. It feels more like a bad case of the flu- not fun, but tolerable and I expect to feel better tomorrow. Really loved reading all the blog posts from yesterday- made me smile today. Jonathan, as always, is taking such good care of me. His positive energy gets me through each day.