First Sip of Chicken Soup

Associated Press: Dateline 6/30/10 Pittsburgh PA.

Observers witnessed MJ Tocci take her first sip of chicken broth this afternoon at Magee Hospital in Pittsburgh, PA.  Hospital officials had difficulty locating broth of high enough caliber to satisfy Ms. Tocci, a long-time chicken soup aficionado.  After scouring the hospital for several hours, however, they managed to produce a packet of HERBOX CHICKEN BOUILLON. The officials were confident the brew would be satisfactory, even to someone with a palate as sophisticated as Ms. Tocci's. In a press statement issued just prior to the tasting,  McGregor Magee, president of the board of directors of Magee Hospital, was quoted as saying "It's all in the preparation", referring to the manner in which the broth was made. Using the classic heat the water and mix in the powder technique, a steaming Styrofoam cup of broth was placed in front of the eager but relaxed Ms. Tocci. After savoring a mouthful of the Herbox for several long moments MJ declared "It's not as good as mine, but I guess it will do." The official rating was 2.5/10. In comments after the event, Ms. Tocci was heard to remark "If only they'd thrown in a matzo ball or two, they might have earned themselves a decent 5". She was unavailable for further comment, having fallen asleep.

JR

Tube-be-gone YAHOO!!

OMG! The NG tube came out at 6 this morning. What an amazing difference. Big smile this morning. The surgeons want MJ to have the pleurodesis today, but I think we're going to hold off for a day or two, so that she can gain strength. Undoubtedly she'll need to have the procedure at some point, but not yet. We're gonna try to get them to take out her bladder catheter today too --> tube count down from 7 to 5.

This feels like a giant step toward coming home, but we still have a way to go. At the moment, MJ is up in the shower - the first since surgery!

This is a great day....we're happy as clams over here.   By the way, Brother Tim stayed with MJ all night last night - THANK YOU BROTHER TIM. MJ is going to get some chicken soup (broth) today. Probably the best medicine ever invented. Talk to you later...

JR

Better living through chemistry.

 We found a drug that seems to work for MJ's nausea, which is great. This afternoon she took a monster nap and is feeling a little better now.  We're scheduled for the pleurodesis tomorrow, but not sure that MJ is up to it. We'll keep you posted on that....

JR

Cornucopia

Another tough day, unfortunately. That motility God needs more homage paid or whatever, because she's not giving MJ a break. They've added some drugs that are supposed to stimulate the intestine to do its thing, so we'll see. Today's chest x-ray shows no increase in the lung fluid....this is very good. MJ is tentatively scheduled for the pleurodesis on Wed, we may go ahead with it anyway as a preventive measure.



We got our first food delivery today, from Arlene Sanderson (a friend from Yoga class). It is amazing! Chicken, meat loaf and lasagna with salad and roast veges and home made desert. This will clearly last us for several days, and we'll freeze what we don't eat tonight. I just figured out how to edit the task dates on the helpinghands website, so I've deleted many of the dates to more accurately reflect our needs. When MJ comes home, I'll add some more dates, as well as announce them on this blog. Thanks to all involved.

I'm sure the irony is not lost on any of us. Sam and I are trying to figure out how we can manage to eat all this food, whicle MJ is starving in the hospital...

Talk to you tomorrow.

JR

The God of Intestinal Motility

I'm at the hospital early this morning. MJ called around 4 unable to sleep. Naturally when I got here, I awakened her, but I think she was glad to see me. Still some persisting nausea.....we'd love to get the nasogastric tube out (in through the nose and down into the stomach - it sucks out all of the stomach secretions until MJ's own intestinal peristalsis gets things moving southward again). We are now on day #9 without food, so we are really hoping that sometime in the next 24 hours we can get that tube out. Everyone say a prayer to the God of intestinal motility!!

After I arrived, we watched an episode of 30 ROCK on Hulu, then promptly both fell asleep at 5:30. At 6:00, the usual circus began (med students, intern, resident and fellow...followed by nurse, nurses aid, and gyn onc nurse practitioner). Each time we tried to back to sleep, but...  :(

They are going to repeat the chest x-ray today to check on the fluid accumulation in the lungs. We'll keep you posted on that.

And the lotsahelpinghands website is taking off....it's so good it almost feels illegal. Thanks to all involved.

Talk to you later today,

JR

Maintaining Perspective

Today has been a slow news day as the weekend winds to an end. Not too many Dr’s around or procedures performed on the weekends, so the emphasis was on MJ's continuing battle to get stronger each and every day. Although she sometimes finds it hard to see the improvements she is making every day, they are exceedingly apparent to those of us who are watching her. She is standing longer, walking further with a stronger gait each day. The toll for these tremendous efforts however are bouts of nausea and fatigue, which of course bring on frustration. The next major milestone for MJ is “passing gas”, which will mean the removal what she currently informs us is the most annoying of her tubes.

I believe the hardest place to maintain perspective is in a hospital bed.

So with the Doc’s returning to work after their arduous golf outings of the weekend, we will expect to start receiving more medical news perhaps as early as tomorrow. As that is just a guess, please be patient if there is nothing significant to report tomorrow.

As you have all seen the June 25th post which included the letter supporting MJ’s nomination for the Athena award by Justice Carol Corrigan, you are aware of the significant achievements she has made towards gender equality and supporting the advancement of women. I’m sure that you all thought that all of those achievements were wonderful. Apparently though she has also captured the eye of those who do not think so highly of what she has accomplished or who support her views. Brother Joe is currently in China on a business trip, and of course, expected to be able to be kept abreast of any developments through this blog. Surprise. MJ’s blog is being censored in China.

Thanks for all who have sent flower to MJ. I think that she has reached the hospital limit, so she has asked anyone who would still like to send something, that they please send her a gift certificate to The Urban Gardener so that when she is home and stronger she can plant flowers in her yard to give her a continuous vibrant reminder of the support she has received.

Last, but certainly not least, we would like to thank Heather for setting up a lotsahelpinghands Community website, of which she and Jonathan are coordinators. The site is: http://www.lotsahelpinghands.com/c/627958/

Brother Tim

MJ's Walk-a-thon

Tim was here this morning to cheer as MJ strolled out the door, down the hall and around the bend. And this  afternoon's walk was even longer - strong and steady. Upon return to the room, MJ promptly fell asleep for 4 hours. Felt good. And Sam will spend the night with his Mom in the hospital tonight - on a blow-up bed.

Not much new to report medically. I'm sure things will pick up on Monday. MJ's voice is as strong as ever. It sounds normal :)

Talk to you tomorrow....JR

Blessings and curses.

Well, the chest x-ray was unchanged. So no answer there. We're going to repeat it on Monday, and if the fluid level goes down, that's good news. If not, MJ may have to undergo something called a pleurodesis, a procedure to eliminate the pleural space where the fluid accumulates. More on that Monday.

Today was a tough day - pain, nausea etc, but this evening was better. This afternoon we scored a big triumph when MJ walked about 15 feet with help....YAHOO! That's cool.  And then there was the Shabbat service at Rodef that I attended with the two Sams (son and brother). It was a lovely service with about 40 of MJ's friends in attendance (thank you Heather and Lynne for helping to arrange this). We said a Mishabarach prayer for MJ. Rabbi Aaron Bisno talked about blessings and curses, and how language facilitates communication, despite the potential for misunderstanding. He also mentioned how language helps us lend support to one another in the face of adversity (I believe he looked directly at me when he said this). We took a photo of all those in attendance which you see above.

Rebecca Harris delivered MJ's Athena Award nomination booklet to me at the synagogue. We thumbed through it briefly when we got back to the hospital.  I was reminded (again) what an amazing person MJ is. I thought you might like to see one of the recommendation letters included in the nomination. This letter was written by Justice Carol A. Corrigan, who sits on the California Supreme Court. Here is the letter verbatim:

So that brings us up to date. Have a good weekend....I'll be posting throughout.


JR

We're waiting on the chest x-ray....

The lung question is still on our minds. We're waiting for a result on the x-ray from early this morning. Nothing much else to report today. We may try to walk a few feet this afternoon.

Rodef tomorrow evening at 5:30

Sam and I will do our best to be at Rodef tomorrow evening. After the service I would like to take a photo of everyone who knows MJ.

Thanks

JR

Life on the roller coaster.

You can see from my prior post that today started out on a very positive note. MJ made it to the chair with a surprisingly graceful maneuver. A milestone for sure. Then the thoracic surgeon appeared, with some disturbing news. Although the fluid in the left lung is draining well (making MJ's breathing much easier) additional fluid has accumulated around the lung on the opposite side. The thoracic surgeon raised the possibility  that this fluid may not be a reaction to the  surgery, as previously thought. It may be evidence of cancer moving to the lung. But we don't really know....we'll have to wait until tomorrow when we repeat the chest x-ray. Anyway, we are now out of ICU, and into a private room with a lovely view of the Pittsburgh Playhouse. MJ says the view reminds her of S.F. - there's a hill in the distance that definitely looks like the Castro.

When MJ and I gave up our respective legal and medical careers over a decade ago, we signed on for a high degree of uncertainty in life. This latest development propels us even farther along that road. No one can predict the future. You just have to roll with the punches. Kind of like a roller coaster, you know?

JR

Uh oh. The chair...

"One thing I like about the stones in my path is when I cross them they become my milestones" - anonymous.

They want MJ up in a chair today. It seems too much to even consider. What with all 7 tubes, a very sore front side, lightheadedness etc... but that's what's on the agenda. Very positive outlook today. MJ talked to several people on the phone, and even took care of a few emails.  Things heading more toward normal, which is fun. There's even talk that she may leave the ICU for a  normal hospital room later today. Yesterday, son Sam, brother-in-law Sam and nurse Samantha were all in the room with us. It was quite a Sam's Club indeed. By the way nurse Samantha Bundle is extraordinary. Professional and immensely caring way beyond the call of duty. THANK YOU SAMANTHA, and the other ICU nurses and staff.

Will be writing you this afternoon from outside the ICU...

It's pouring outside the ICU.

But we're all cozy in here. MJ had a pretty good day, after a pretty bad night. She's looking better and better, and she's got her voice back.  It's music to my ears. Her tube count remains high at 7, with tubes in every imaginable orifice - and then some. The latest tube was placed in her chest this afternoon, to drain fluid that's accumulated around the lung. It was placed by a resident who had never placed one before...yikes. The wonders of teaching  hospitals. Never fear, though, MJ is lecturing the residents on some advanced communication techniques - like saying "good morning" when you awaken the patient from a deep sleep to ask them how they slept.

As you can imagine, MJ would do anything for a plate of whole wheat pasta, but food is not going to be a part of the picture for another day or two. C'est la vie. The important thing is that she's getting stronger and stronger so quickly, which is nothing short of amazing :)

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Nothing new to report at this moment.

JR

Okay, maybe the ICU isn't quite heaven....

But it's close. A nice big room, with a comfy bed and a big picture window with a view.  A very very attentive staff. Not too bad. But relentless noise all night long, interminable awakenings. You know the drill.

And wow, what a difference it makes. She looks SO MUCH BETTER today! A strong voice, a strong laugh and and the jokes are flying fast and furious.  Medically things are improving slowly, but spiritually a big gain. The pain is still there, but it's a little better.

Dr Krivak was in this morning and we learned that we are likely looking at a year's worth of chemo, once a week. Sounds like quite a challenge. But if that's what it takes, okay then. We're going to spend some time evaluating the different options. If any of you, dear readers, have some thoughts on this, send us a comment.

MJ says you should feel free to share this blog address with anyone who may be interested. And I thought you might like to see the Hydrangeas in front of our house. This was taken this morning on the way to the hospital.

 Talk to you later.

JR

Heaven in the ICU

They were finally able to find a bed in the ICU, and MJ is now happily ensconced there. What a difference - a real bed instead of a gurney. Her mood has lifted dramatically. Too long in recovery....but that's over now. Have a good night one and all. You too MJ. Talk to you tomorrow.

JR

Emerging from anesthesia

We joined MJ in the recovery room this evening (an hour or so after she requested our presence). All things considered, she looked fabulous. Just as Brother Joe suggested, she greeted us with a smile. None of the docs had spoken to her about the results of the surgery, so I filled her in, reciting what Dr Krivak said to me earlier. Needless to say, she was ecstatic about the success of the surgery. She drifted in an out during the 2 hours we were with her. Her stay in the recovery room is being prolonged by the fact that the ICU is full. Presumably some other patient will get the boot. Sorry.

More tomorrow,

JR

Turning tragedy into triumph

Jonathan - thanks for the great news, strength and vigilance
Sam - you were right, your mother is an amazing person, physically and mentally
Tim - your the greatest brother anyone could hope for and a constant steady source of comfort

When I first visited MJ in the hospital, I was trying to be the pillar of confidence, but tough to do with tears rolling down my cheek. Walking thru the door, I was greeted with this smiling happy face, saying " hey Joey, how are you doing". How was I doing????? Well a lot better now seeing my sister's attitude in the face of adversity, upbeat optimism and the ability and sincerity to project that to anyone entering her space.

I cannot believe the inspiration she provided in the face of both disappointment, pain and uncertainty. We are now thru the hardest part, and I cannot help but believe the positive attitude is what has contributed to where she is today.

She has a challenging road ahead, but we all pray for a speedy recovery. And I would expect when Jonathan visits her in the recovery room, he will be greeted with a smile. Makes me proud just to know her.

Wow. It's over.

MJ just got out of surgery, and THANK GOD it went well.  Dr Krivak  was able to get all visible and feel-able tumor out. So he says MJ is now macroscopic tumor free. He did not have to remove any part of her intestines (YAY!). Surgery lasted just short of four hours.

He had to "strip" a fair amount of tumor from under her diaphragm, so this will be quite irritating to the lungs. He also had to remove tumor from much of the peritoneum (the filmy lining of the abdomen). These two things mean that the next 24-48 hours will be rough for MJ. She'll be in the ICU where they will be better able to monitor her fluid balance (the risk is that as a reaction to this much surgery, MJ's body will flood the abdomen and lung lining with a lot of fluid, which they will have to replace with IV's). She's presently on a ventilator, and may remain on it for the rest of today. We can't go back to see her... and even if we could she wouldn't know we were there. They will keep her pretty drugged up for the rest of today and perhaps tomorrow.

So the bottom line is: The surgery went well. They got all the tumor that could be seen or felt. And no indispensable items were removed. So on to the next phase... a day or two in the ICU.

We are taking a break and going home, hoping to return later this afternoon when we can give her a brief hug. We'll keep you posted....

The Waiting Game Continues

Tim, Sam, and I are in the waiting room at Magee. MJ's been in surgery for over 2 hours. I thought you might like to see this picture of MJ with her Dad, taken last November. Hope to be bringing you surgical results very soon....

JR

The Waiting Game

MJ is in surgery as I am writing this post. Now comes the hardest part for me, the waiting for information.

I got in to MJ’s room around 6:30 this morning and she was in wonderful spirits. I think that the combination of a good nights sleep (with a little assist from some ambien) and knowing that likely her surgical team is also coming off of a good nights rest (as compared to the original plan of her going into surgery last night at 6 pm) has given her a boost of confidence and optimism of a good day to come. As we were in her room waiting to be taken down to the surgical prep area, we heard a loud clap of thunder. MJ had me open up the drapes and we watched the torrential downpour of the passing storm, to which she replied “rain is a good sign”. Personally I think it was Mom and Dad’s alarm going off so that they could watch over her and her surgical team during the operation.

So with some parting jokes (good ones from me, not so good ones from her, but she tries), a chuckle, a smile and a kiss, I left her in the pre-op as they came to take her into the OR.

Now with patience (or actually quite a bit of impatience) we wait.

Stay tuned, same bat time, same bat channel (how many of you remember that line??) as the next post will likely be shortly after she comes out of surgery when we have some more concrete information of how she is going to beat this.

Tim (MJ’s much younger brother)

off to the OR

MJ is in the OR. Keep all your fingers and toes crossed.....

MJ's in very very very good spirits.

Just got off the phone with MJ. She is busy sending the blog address to everyone she knows....no small task. She had a good night. They gave her a little oxygen last night and she feels great. In short, she's rarin' to go.

Dr Krivak (MJ's surgeon) came by last night. He was incredibly chatty which really lifted our spirits. Turns out he spent some time at Travis AFB during his training,and knows SF really well. We reminisced about the bay area for quite a while. It was fun. He did his training at Walter Reed in DC. We've heard from a lot of people that we couldn't have found a better surgeon. You can read about him here.
They'll come to get her at 7am. Handsome Tim Tocci is by her side this morning. Stay tuned...our Neilson ratings are bound to be good today!

JR

How we managed to get here.

"I've always grown from my problems and challenges, but when things don't work out... that's when I really learn" - Carol Burnett

Hello from Magee Women's Hospital.

As you can imagine, this has been quite a week. How did we manage to get here? Here's a quick recap. Late last year, MJ went in for a routine physical exam, and her doc found a nodule on the right side of her thryoid. A needle aspiration was not conclusive so, on the advice her doctor, we signed her up to have the nodule removed, along with the right half of her thyroid. On Cinco de Mayo, MJ underwent the surgery without blinking an eye. Recuperation was swift, and MJ was back on track within a few days. 10 days later she delivered a lecture to 100 entrepreneurs at Chatham University as part of the Women's Leadership Conference. The pathology exam at the time of surgery (frozen section) was normal, but the final report showed thyroid cancer. As her surgeon was quick to point out, "If you have to have a cancer, thyroid cancer is the one you want to pick". MJ added that she would choose the NO CANCER option, but this was not one of the listed choices.

On June 14th (Flag Day - MJ prefers to go under the knife on holidays) her surgeon removed the left side of her thyroid for a matched set. Just as was the case with the first surgery, MJ bolted from the hospital within 24 hours of surgery. But the ensuing days were rough.... a fair amount of abdominal discomfort and distention. We attributed these symptoms to side effects from her pain medicine, but by 1am on the 3rd day after surgery the symptoms had progressively worsened. After 3 hours at Shadyside emergency, a CT scan showed ascites (a fluid collection in the abdomen usually caused by cancer).

They shipped us off to Magee Hospital, where they have a team that specializes in cancers of the female variety. We've now been here for 3 days, and MJ has been poked and prodded relentlessly. Magee is a teaching hospital (part of the University of Pittsburgh) so there's been a continual parade of teen-aged doctors-to-be tromping through. Some of them are diligent and adorable, others somewhat clueless. We're very happy to report that MJ's main docs are stellar: Tom Krivak, gyn-onc, and Peter Tanzer internist.

We've had our share of nosocomial (hospital caused) problems, including a skin infection from the needle sticks. Also, an IV blew during a CT scan infusion, dumping 100 cc of contrast dye under the skin of MJ's left wrist.

But all in all, we remain amazingly optimistic. MJ's colonoscopy showed that the tumor does not involve her colon, which is a very good thing. MJ's spirits are very strong and she has an remarkable outlook. "Let's get this show on the road...I have things I need to do" has been her approach all along.

As a couple of the docs reflected on the presence of both seemingly unrelated cancers, one of them remarked "lightening is not supposed to strike twice in the same place....but in this case it looks like it did". That was our feeling too.

Surgery is scheduled for 8:15 tomorrow morning, Tues June 22. When they consented us for the surgery the consent form listed just about every possible surgery one could imagine. This is a reflection of the fact that they don't know what they are going to find. They'll decide what they need to do when they unzip MJ and take a look. Right now, we believe the tumor is ovarian, but we'll know more after it comes out. The surgery will last anywhere from 2-6 hours.....we'll keep you posted.....

We invite you join us on this blog often. We'll do our best to keep it up to date. Thanks to Jody Rosen Knower, whose blog inspired us to write this one. Like Jody, we'll have a few ground rules to help us all remain relatively sane during this process:

1. Please add your comments to the blog. We love to read them, and we can do so on our own schedule.
2. Feel free to incorporate humor into your comments. The doctors have prescribed a diet of as much humor as possible, and they've promised not to remove MJ's sense of humor at surgery tomorrow (as if they could!).
3. When in doubt, post a comment instead of calling or emailing. At the moment, we're limiting visits and calls to immediate family. We'll let you know when this changes.
4. Even if they tried, the docs couldn't remove MJ's sense of humor.
5. We reserve the right to add more rules as time goes on.

Talk to you later.....

Jonathan