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

Turning the corner

MJ definitely turned a corner yesterday. She took 4 long walks during the day, including a visit to the Magee organic vegetable garden, where we sampled a couple cherry tomatoes. Delicious! Her sense of humor is back, and it seems like she may really make it home on Saturday. She's not out of the woods yet....the pain persists. But it's manageable.

I've heard that a couple friends have spouses in the hospital...my heart goes out to you. It's no picnic. Is it the way the stars are aligned?

Crossed fingers for MJ to return home tomorrow.

JR

It's painful.

The pleurodesis went without problem yesterday morning, but it hurts. Tube count is back up again. Thick fog with lots of pain medication and sedation. MJ will be at Magee until Saturday or so. Then chemo starts on Tuesday. This is tough.

JR

We're on a roll....

Greetings from Magee. MJ is breathing much easier now that they've drained the fluid around the right lung. We've been getting all our ducks in a row for chemo over the last couple of days.


Tomorrow morning at 7:30 MJ will undergo the pleurodesis and placement of an intravenous chemo port. After the surgery she'll remain in the hospital for for 2-3 days with a chest tube. She's most likely going to be pretty uncomfortable for those days, so she won't be able to receive visitors. If you feel like it, however, she would love to read comments posted on this blog....so (as my son would say) knock yourself out.

I'll let you know how things go tomorrow.

JR

Hello again Magee.

The shortness of breath got worse today. So off we went to the Magee ER around noon...where a chest x-ray showed that the fluid around the lungs is significantly worse. So now we know why this has been such a rough week. They called in the interventional radiologist (Dr Amy Lu) who easily inserted a catheter in MJ's right pleural space , which drained quite a bit of fluid. The breathing is MUCH better now. A big relief. They're keeping her overnight to see if they need to do the other side. Maybe home tomorrow.

My sister Pola was here much of the week. She was an invaluable help and source of love and support. Thank you Pola!

JR

Waiting for Godot

Okay okay, I gave you all the impression that we were starting chemotherapy this week, which is not the case. Actually, we wish we could start this week, but there is still some preliminary stuff to take care of, like more lab work and port placement. MJ was in a fair amount of pain during the early part of the week, but we've now got her on a Fentanyl patch, which seems (so far) to be helping. So that's good news. The pain is probably coming from the cancer, so we would like to start the chemo asap, because it will help to alleviate the pain. Hopefully we'll start the chemo next week.

In addition to the wonderful food that the helpinghands community has been bringing, MJ has received some great gifts - books, flowers, hats, cards, and so forth. As I mentioned before, all this amazing support has been vital to her healing. This has been a hard week, and MJ hasn't been able to individually thank everyone. Know that she is aware of your gifts and that they mean so very much. MJ also hasn't been able to take phone calls this week. Your understanding is appreciated.

So we are still in limbo, waiting for chemo to begin. Whoever thought we'd be eagerly anticipating chemo? Well, we'll let you know when it starts....

JR

Everything is in relation to everything else.

Tomorrow at 9:30 am we'll take the next step. We've gotten a virtual second opinion from a friend of a friend who is a gyn oncologist at MD Anderson in Texas. All the docs are in agreement about the kind of chemo MJ should undergo, so tomorrow we start the process.

The food deliveries continue and are miraculous and life affirming. In fact, the breadth of support that finds its way to MJ makes her courage about this voyage possible. And that's just as it should be.

"All things appear and disappear because of the concurrence of causes and conditions. Nothing ever exists entirely alone; everything is in relation to everything else." - Buddha



JR