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

Challenge

Dear Sister, I am sorry, but I think it now time to take this blog to a new level. Since there have been a few quiet news days, and in an effort to keep your followers riveted, I feel it is my responsibility, and even more, my duty as the youngest and most annoying brother, to begin a historical segment of this blog. I take on this task with the full knowledge that it may end my privileges as an official poster for blog entries, but then, even if only a few privileged readers are able to see this sneak peek into your past, I feel that I will have achieved my goal.

But, before I get to the good part, I will post a different challenge to followers of this blog. I'm sure you have all seen the Athena Award recommendation letter that had been posted last month on this blog, in which just some of MJ's incredible accomplishments were eloquently exposed. I know that you who follow this blog have been touched by and have wonderful memories of experiences you have shared with MJ from so many different periods of her past, both professional and personal. As time goes on in this blog, I would like to post some of your stories to refresh the and rekindle the love and joy that she brings to all of us. So, I invite you to email me, tjtocci@gmail.com, any anecdotes, you would like to share so that we can all learn more about how she has touched each of our lives. Names will be with held upon request. I will be posting these (assuming I still have privileges after this post) randomly, so it may be weeks or months before your story shows up. I maintain full editorial privileges of what and when to post any stories, some may show up as comments, some as posts.

So to kick this chapter of the blog off, I am issuing a challenge called:
Where in the picture is Mary Jane (MJ) Tocci???
There are two pictures below, and one of them really does have MJ in it. See if you can find her. Post in your comments which picture (top or bottom) and which number (1 - 5 left to right) of who you think is the real MJ.

Good luck and good hunting!!!

Pictures worth 1000 words

Photos taken today.

JR

Better late than never

I know that I was supposed to get you a photo a couple of days ago, and I apologize for that. So here it is...




Zoe is home, which is great great great. She had a splendid time at Camp Guci...lots of friends, lots of singing, lots of reading, and very very tan. It's so nice to have her back.

And MJ is doing well. Repeat chest xray this week showed no additional fluid accumulation in the lungs (!). Pleurodesis has officially been canceled for now (yes!). The thoracic surgeon, Dr Manisha Shende is a very cool lady doc from India. She is one of only two females in a group of 14 thoracic surgeons...MJ will be signing her up as a coaching client soon.

She's not only giving us very helpful advice about MJ's lungs, but also giving us first hand reviews of the iPhone IV (she likes it, but says it's very slippery to hold). We have an appointment with Dr Krivak on the 19th, and chemo will start very shortly after that. MJ is getting her hair cut short tomorrow, and will have her head shaved the day before chemo starts. She feels like that's a pretty good way to take control of the situation.

We all went to Toy Story 3 this evening, and it was a hit. Especially Buzz Light-Year doing the Tango. Some very famous voices and good writing. MJ is slowly working up to some additional outings, so don't be surprised if she calls and asks you out to lunch.

: ) JR

a little bit of a holding pattern

It's so great to be home. There's no doubt about that. And now we're in a little bit of a holding pattern, waiting for the next phase of treatment to begin. MJ continues to improve, though each day is unpredictable. Some days she has an amazing amount of energy, and it seems like we can do just about whatever we want. Other days are rough, with a lot of pain and fatigue. Add to that the psychological ups and downs, and you have a pretty good picture of what's going on. The caring and support that comes in the form of food, plants, blog posts, email and cards is wonderful. We still get overwhelmed by the phone, so email or posting on this blog are the best ways to talk to us.

We are in the process of learning about chemo, and preparing to start in about 10 days. We remain powerfully optimistic about this whole process. Zoe comes home tomorrow...we are so very excited to see her. We look forward to the remarkable energy with which she fills the house. Sam spent today at the Woman's Open in Oakmont...he was so excited he could barely breathe. He is very tied in to MJ, and is involved in all aspects of this process.

We promise pictures tomorrow....

JR

False Alarm

We spent about an hour at Magee Emergency last night...MJ just wasn't feeling right. They were great. We were in a treatment room within 10 minutes of arriving. Nurses were in and interviewing MJ 5 minutes after that. And Dr Garg was in immediately after.







And GOOD NEWS...everything checked out fine. Dr Garg was as warm and supportive as she could possibly be.

We got home around midnight, and MJ slept like a log for the rest of the night. We're going in to see Dr K tomorrow. I may have some news about when we'll start the next phase of treatment after that visit.

Really glad the visit was a false alarm....

JR

Enjoying the heat...while keeping our cool.

It's supposed to get up to 94 degrees in Pittsburgh today...but we're cool. MJ gains strength daily, feeling more and more like her normal self. We've been decorating our new deck with frequent trips to the store for outdoor furniture, plants etc. It's looking pretty cool indeed.

We're getting twice weekly visits from the home health nurses. Needless to say they are a great help, managing the injections, blood draws and the rest. I'm even getting a chance to brush up on my medical skills now dormant for the last 14 years.  MJ says I'm much too enthusiastic when it comes to giving her the injections or otherwise sticking her with needles. I don't know if I agree...

She's been cleaning like a maniac. Tackling projects overdue for years...where'd she get all this energy??

The pleurodesis is scheduled for next week,  but may not be necessary. We have an appointment with Dr Krivak next week,  to determine the chemo regimen. We'll  keep you informed about all that.

The food continues to arrive. All of it much better than any restaurant  you can imagine. It's paradise.

Thanks for your continued interest in our adventure.

JR

Fireworks again?

For about 10 seconds, we considered doing something this evening to celebrate Independence Day. Then we realized that the celebration was in being home together....so that's what we've been doing. MJ continues to improve. They want us to go back in 10  days for the pleurodesis...but we're going to try to avoid it (don't worry - if they insist, we'll do it. But if MJ's breathing remains easy, we may not have to.)

We were in Lowe's today, and MJ rode one of those electronic carts. It was fun. We continue to enjoy the food deliveries....they are nothing short of superb.

We'll keep you posted. Remember starting tomorrow you will have to sign in get access to the blog.

JR

Home sweet home...

MJ is sitting in the back yard with the hugest smile on her face - sipping some of JR's world famous iced coffee. What a relief to be home.

JR

Bye Bye Magee

Well folks, it looks like we'll be moving on to the next stage of this adventure. MJ continues to improve, so we'll head home this afternoon - or tomorrow morning at the latest. Thanks for tuning in during our stay at Magee. This blog will continue, but we'll set up authorization so you'll have to sign in to participate. And I'll add some more food dates on to the helpinghands website. Thanks to Arlene and Marlene for kicking off the food deliveries.

Thanks for being here with us. Your participation has made this whole experience much more tolerable!

JR

MJ's on Easy Street...relatively speaking.

"I turned a big corner yesterday." Indeed she did. Once the NG tube came out, things started to fall into place. The bladder catheter is out. The surgical drain is out. Incisional staples are out. Diet is advancing. MJ is up walking around and causing trouble. Thinks are definitely looking up. Tonight - solid food...

We're even starting to talk about GOING HOME!!! Maybe Saturday. We'll let you know...keep your fingers crossed.

JR