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.

Day After Chemo

Had my appointment with Jeffrey today to shave my head and begin the exploration of life's many head adornment options. Kristin came with me and the wonderful energy in the studio made the time very empowering. Here is the first photo shoot with Jeffery and my new wig, It feels great and the whole experience was truly uplifting. It was a celebration of seizing control and knowing what matters.

Also having a surprisingly good day with little nausea and hope for the best tomorrow.

Chemo and Accessorizing

"It's been my experience that as long as we are correctly accessorized, we can pretty much face anything" - friend and author Denise Caruso.

I was able to get chemo yesterday because my white blood count bounced back to within the normal range (very good news). The distention in my abdomen is significantly better after only one treatment (more good news). I no longer worry that they will think I'm the oldest pregnant woman at MacGee Womens Hospital (even more good news). They gave me a new drug for nausea so here's hoping it helps me weather this round. Whoever thought that seeing the numbers on the scale go up would be GOOD news?

What does all this have to do with accessorizing? I decided yesterday morning to get dressed up for chemo - a look good, feel good sort of approach. I thought it might be time to alter what my husband described as the "straight from the shtetl" look (imagine a schmata on my head and loose fitting clothing). I even put on makeup and earrings and wore a pumpkin colored scarf with gold threads wrapped around my head several times. In the chemo waiting room, two women independently asked how I tied my scarf. Once inside, another woman asked too. Finally, a man came over. He wanted to know where I got my "headdress". He wanted to purchase one as a gift for his wife. He was amazed when I told that I did it myself. When I had to arrange a group tutorial, I knew my moment had arrived. In a room filled with people with cancer...you find joy in surprising places. Somehow it seems appropriate that my first contribution to the world of cancer patients would involve accessorizing.

I read a terrific article from the Huffington Post about the gender wage gap written by friend and colleague Joan Williams. When I put the article away I turned to check on the blog only to find a lovely comment from said Joan Williams. These connections astound me.

Chemo went well and Jonathan was my steady and comforting companion. I had a really good day yesterday, but last night I got anxious again. Fortunately, my newly learned breathing exercises help me move through the anxiety. I appreciate the good days and never take them for granted.

Brother Joe is hosting the kids till Monday - we miss them terribly...but know that the time with their aunt, uncle and cousins is allowing them to build lifelong connections. It brings me back to my summers with my own cousins, who now feature so prominently in my life. A recent visit from John and Heather a prime example.

I'm enjoying my time with Jonathan - we're beginning to reconnect with some projects that are particularly meaningful. Especially our documentary CHANGING THE FACE OF SCIENCE. As always, we're thankful for your support. By the way, we had Mexican last night from WHEEL DELIVER. Thank you, thank you, thank you. And thanks to Franny for the chicken soup. Yum.

Love MJ (and JR)

We plan. God laughs.

It's been a week of up and down around here. We spent the first part of the week taking care of work stuff, which went very well. Then, on Wednesday, we packed up the kids and shipped them off to New Hampshire. Thanks to the brilliant posts by brother Joe, we know that they've been having a blast on Lake Winnipesaukee. Sam has already begun lobbying for us to get a jet ski to use on the Monongahela. Somehow it doesn't seem like it would be the same.

MJ has been feeling pretty good overall. On Friday they called from Krivak's office with the news that her white blood cell count is down to 2 thousand cells / cubic millimeter of blood (normal is around 5 ). Based on that, they've postponed the chemo which was scheduled for next Monday - it's now scheduled for Monday the 30th. MJ has to steer clear of uncooked vegetables, and eggs (especially given the current salmonella egg crisis). And yesterday MJ spent a fair amount of time in the bathroom - she has asked to me to describe as her as being "indisposed" during that time. And she noticed clumps of hair coming out in the shower yesterday. So much for sailing through treatment number one unscathed or just barely scathed. It looks like we've more scathed than we were willing to admit.

Friday was also the day MJ had her first session with a mediation coach. They're using some breathing techniques to work through MJ's anxiety about all this. Good results so far. On Saturday, encouraged by dear friend Batia Rascoe, MJ took an hour-long walk around the Highland Park Reservoir. A big milestone for sure. And she made it to Rodef for the Saturday morning Shabbat service. So....not so bad.

The kids are due back on Thursday. We had planned for them to be out of town during MJ's second chemo, but God had another plan in mind. We're looking on bright side....another week to prepare for that second treatment. This week we'll be getting ready for school to begin, just like all of you. We'll keep you in mind...

Love,

MJ and JR

We Miss You

We are greatly enjoying Sam and Zoe this week, but miss having MJ and Jonathan here. Sounds like MJ's next round of Chemo will be delayed a couple of days, so hoping for as relaxing a week as can be expected in Pittsburgh. Jonathan and MJ's family member visits have been considerate and meaningful, however I expect the downtime is a blessing. Especially knowing thier children are in the calm and safe hands of brother Joe and Susan.

Speaking of safe hands, not sure how Sam grew the 2 new ones, but I expect they will be nice to have around the house the next few months. Sam and Catherine also went golfing yesterday, and had a great time. Lot of mumbling when I asked them how they scored. My suspicion is they played incredibly well, but did not want to compromise negotiating position for the up and coming family match.


Zoe enjoyed the boating, but initially decided to take a more passive role as a boat model. She enjoys the lake, and today we hope to get her engaged in a few more water activities. At the end of the day she jumped in and assisted Susan in all aspects of preparing a wonderful dinner after watching 2 episodes of Ratchel Ray. The teamwork resulted in a memorable feast.

We hope for another great day today and hope to get a visit from Karen and Mike - MJ's friends from Oakland. They and daughter Annie and are visiting NH and staying right down the road.


Uh-Oh - Zoe just got up and asked to go out on the Jet ski this morning. Do you want to go now? No, she replied, I want to wait intill Catherine gets up and go with her, because there will be no room on it with your big butt! So now she can safely go out instead with someone who is not up for the safe driver award. Will keep you posted.




Joe & Sue

New England Adventure

The Belmont Tocci's have the pleasure of spending a few days with Sam and Zoe this week. They arrived intact last night, and Sam assisted us with cleaning out the refrigerator before heading north to New Hampshire this morning. It was OK when Sam grew taller than I when he was about 10, but I didn't expect to be eye to eye with Zoe quite yet.

On the way home from the airport we informed Zoe that we had disconnected the internet from our houses, and it would be a quiet week with no game's, TV and computers. She slapped me on the back ot the head while driving (I was driving at this point, not Zoe), and told me that was not possible. I asked her why, and she said we must have the internet, otherwise how would we be able to ever book airline tickets or buy clothes. I didn't have a good answer for that one.

We hope MJ has the opportunity to relax while have the pleasure of enjoying some wholesome outdoor activities with the kids. Today might be limited to biking down Mount Washington and possibly some cave diving in the lake. After that we will enjoy an nice dinner of lard fried hotdogs wrapped in bacon, dipped in Mayo. MJ - Wish you were here! If thing go well with Sam and Zoe maybe Joey and Catherine will try some of this stuff too.

Really looking forward to spending time with the kids, circumstances have resulted in Sam being asked to mature beyond his years, and he has grown into an amazing adult. However the plan this week is for us all to be kids again.

Love and kisses to our Pittsburgh Parents and....

Let the games begin!

MJ calls it nesting.

Another good day. Working around the house, hanging pictures and so forth. It's good to get caught up in this kind of stuff. Theraputic. MJ calls it nesting.

We got Zoe situated for Wednesday's webcast, so we're all set for now.

Later...

JR

A note from MJ herself....

Today was a good day. Reasonable energy, cleaning my office - which is a herculean task. Things pile up faster than imaginable. My friend Kristin and I made it .78 miles on our “endurance walk”. She and brother Tim are my personal trainers who don’t seem to fall for any of my excuses for not walking. Guess I picked the right two. We were also pleased with today’s progress on the culinary front - we baked an apple pie to go with J’s delicious dinner.

As Jonathan mentioned in yesterday’s blog- we are so grateful for the Wheel Deliver meals, and (of course) those which have been dropped off by you. Unfortunately they won’t tell us who contributed. Thank you all, but please let us know so we can send you a note. Can’t promise a hand-written one, but we’d like to express our gratitude to you.

Here is a favor we need - if at all possible on such short notice. On this Wednesday August 18^th we have a live webcast for our Navy client scheduled from 1-3pm. Trial Run partners Warren and Dave will be hosting and my role is very limited. We would greatly appreciate it if someone can host Zoe from about 10 or 10:30 to 3:15. She is leaving for New Hampshire later that afternoon but the webcast demands are so urgent that it would be easier for us if she was occupied elsewhere. I just don’t have consistent energy to entertain her while Jonathan is tied up with the webcast. Let us know if you can help.

Again, thanks for your prayers, all your kindnesses, the wonderful cards, comments and emails. They truly sustain us.

Much love

MJ

Bye cousin Sue.

My cousin from Chicago (first cousin, once removed) left yesterday after a lovely week with us. We reminisced about family, shopped for new bedding, and enjoyed "Jewish Chicken" - an old family recipe from a surprisingly young cousin. Sue even took MJ for a double cure (manicure and pedicure). MJ enjoyed a strong week - her symptoms significantly better - until yesterday afternoon when things got worse again. Friends have likened cancer treatment to the weather...a few good days followed by a few bad ones. That's true. Tonight seems better again.

We are due for Chemo #2 on August 23rd. Sam and Zoe will travel to New Hampshire for 8 days starting on the 18th to be with MJ's brother Joe and his family. This week Zoe has been in Naperville, Illinois cozying up to my brother Sam and his family, as well as grandma. Thank you Sam and Ann! (The fact that my brother and my son have the same name is sheer coincidence).

On Monday I called WHEEL DELIVER to inquire if there were any participants under our name. I was shocked to find that there is a veritable fortune in our account. THANK YOU TO ALL WHO MADE A DONATION FOR US. Unfortunately, WHEEL DELIVER is not able to give us names. PLEASE PLEASE - if you donated money for us, please send an email to let us know: jonathanrest@gmail.com. Thank you again. Also, we have some dishes left from those who delivered food, but we are unsure whose they are. If you are missing a dish let us know.

We continue on a most hopeful note, anticipating the next round of chemo. The first seems to have done some good.

Lots of love,

MJ and JR

PS - I had sushi tonight from WHEEL DELIVER. It was nice. Unfortunately MJ isn't hungry :(

More on the "Road to Recovery"

Praying we have turned a corner here and hope that MJ will be able to recognize some sense of improvement once the initial effects of the first Chemo work thru. It’s been a process that has not really given her a break from procedures. But I hope the next few weeks can begin the healing physically and emotionally. With the incredible support from friends and family, Hopefully the “new beginning”, of road to recovery will be swift.

I wanted to write some notes for the blog earlier, but felt incredible pressure. Timmy had told me some folks had noted some earlier blogging that I had done. So in contemplating what to write, I listened to a few of my favorite songs. I put on vinyl classics like “rappers delight” by the Sugar Hill Gang, “Cry Me a River” by Julie London, “Achy Breaky Heart” by Billy Ray Cyrus, and one of my Barry Mann favorites “Who Put the Bomp (In the Bomp Bomp Bomp), and suddenly felt inspired by these other one hit wonders.

I was initially confused as to the treatment that MJ will be undergoing over the next few months, so I did some independent research. I found that its roots are in china, brought in by immigrants in the late 1800’s. The jist of it is a participant marks 1-20 numbers on a card that has 80 numbers arranged in 8 rows of ten. She must not have picked the right numbers on Monday and she seems to be taking it hard. Come on MJ, lighten up, will you!!!! Your chances of winning will increase each time you play.


One of the things that will make this recovery process easier is that MJ’s sense of humor is in great shape. I know she misses the training, so since she can’t get to Yoga, we can bring some Yoga to her;

In that light, remember,

90% of the game is half mental
If you come to a fork in the road, take it
90% of short puts don’t go in (thanks Pap Pap) – like cutting the pizza in 4 pieces
No you didn’t wake me up, I had to get up and answer the phone anyway

I think that all we can Berra for now on that subject.

So MJ and family, we look forward to seeing you soon, and hearing more good news on the Road to Recovery!

Chemo day - the first step on the road to recovery.

It's so cool to have MJ home. Cousin Jackie left Saturday morning on the Greyhound to DC. Jackie's visit was wonderful....we planned a cozy week at home, but by the time she arrived MJ was unexpectedly back at Magee. So Jackie became expert at navigating route 71a on the Port Authority Bus...and we tag-teamed it. Home with Sam and Zoe, and at Magee with MJ. Thank you Jackie. We miss you.

A couple hours after Jackie left, MJ came home. I have to be honest with you...she's frail. Not a lot of stamina, a fair amount of nausea, and still somewhat short of breath. Fortunately, my sister Betsy arrived from Minneapolis that same afternoon. So good to have her with us...thanks Mike for letting us have her!

So with MJ home and Betsy here, we've been setting up for end-of-summer, return to school and chemo. Betsy and I have been doing some fun cooking....although MJ's appetite hasn't been great. Sam started his internship this week. He's working with Susanne Gollin in her genetics lab. Pretty exciting. Zoe will be going to Naperville to be with my brother and his family this weekend. A busy few days.

And today, I'm writing this entry from the Women's Cancer Center at Magee. MJ is finally getting her first chemo treatment. We've been looking forward to this for quite a while. We settled on a little less aggressive chemo regimen to start with....for at least two cycles. MJ will get Taxol and Carboplatin I.V. today, and again in three weeks. She'll have the intervening three weeks off. After that time, depending on her response to the treatment, we may move to some more aggressive treatment.

We're feeling very positive about the chemo. They're getting very adept at handling side effects these days, and the drugs are getting more specific in targeting cancer cells. The surgery MJ had when she first came to Magee removed all of the MACRO-scopic tumor. The chemo is aimed at the remaining MICRO-scopic tumor (plus whatever has grown back in the interim). There's still a lot of tumor left....as evidenced by the fluid in the lungs, fluid in the abdomen, pain etc. These symptoms will all be significantly improved by the chemo, since it will likely get all of this remnant tumor. So the chemo is indeed the path to recovery. We'll be sure MJ gets whatever nutritional supplements are appropriate in chemotherapy. Additional treatments (including some alternative treatments) may play a role once MJ is in remission.

You may have noticed that there are no more volunteer food dates on the helpinghands website. We are cooking much more often now. We will, however, add some other tasks...including some Zoe activities (breakfast, lunch and other outings). We've also set up an account at WHEEL DELIVER for restaurant meals delivered to our home. If you would like to make a donation to WHEEL DELIVER for us just call (412) 421-9346 and tell them you want to donate to the "Tocci Rest" account. They'll tell us about your donation.

So that's it for now. MJ is feeling stronger today, and we are very hopeful for the future. Thank you for hanging in there with us. Love MJ and JR.

Addendum:
Now 8:30 pm on first chemo day. MJ feels good. Our spirits are excellent.
JR