More good news. My cancer markers continue to drop. Last test result was 22 and we are now at 17. I had more energy after chemo this week than usual and am hopeful for a healthy and energetic weekend. After next Monday's round we can cross off 4 out of 6 IP treatments. My oncologist is talking about a year of evastin when I am done but the schedule and side effects should be much easier than what I've already been through. Bring it on!
We generously provided snow and cold weather for Ann and Karen's visit from California- What a joy to have them here. I went to Florida with my brothers last weekend to spend time with my 88 and 86 year old aunts who we love dearly. Helping them through some of life's tough decisions reminded us that aging is not for sissies.
Looking forward to Jonathan's brother and family arriving on Christmas day and then to the Joseph wedding on New Years with more family. Sending peace and joy from our household to yours.
Friday, December 17, 2010
Monday, November 29, 2010
Cosmopolitan- special chemo issue
Can you believe that Cosmo approached me to do this issue? You have to hand it to Cosmo being up on the latest scientific information. I mean, who knew that they could use your horoscope to chose the right chemo treatment? In the interest of full disclosure there were a few faces of cancer that didn't make it on the front cover- like the Groucho Marx mask I had to wear until I discovered these fab false eyebrows. Thanks here to Linda M, my trusted adviser on accessorizing. When I put the first pair of false eyelashes on upside down I knew that false eyelashes were not in my future. I seem to lack the necessary technical expertise. Any and all advice welcome.
(Cosmo cover by Jonathan Rest.)
Today was the half way mark for the IP treatment. Linda H provided wisdom and comfort during my chemo and homemade sauce and pasta for dinner. So many thanks.
I spent most of Thanksgiving curled on brother Tim and Kimberly's couch knowing that I didn't have to cook or clean. My only effort was in eating the very fabulous meal that they made for us. This approach to thanksgiving appeals to me.
This week is busy with documentary projects, going to Sam's 10th grade class to talk about cancer (they are studying it in science class), teaching an all day module for the the Women Executive Leadership Program on communication and negotiation and then waiting for Karen and Ann to arrive from Ca. for a long weekend.
We are now open to the healing light of Chanukah- I attended David Goldstein's amazing chanting circle with Debbey D.on Sunday at Temple Sinai. Here is the phase that most transformed me:
Al hanisim, v'al ha-nifloat, v'al ha-t'shuot v'al hamilchamot
For the miracles and the wonders, and for saving grace and for the battles.
Chanukah, the festival of lights is sometimes about finding light within the darkness. These symbols are especially powerful this year. Wishing you healing light and comforting light, joyful light and most of all shalom!
Tuesday, November 23, 2010
Mary Ellen and Dave
I take many trips to Magee hospital for Dr.'s visits,labs or chemo. I enter the hospital knowing that each visit could be either routine or daunting. As I enter into the lobby my step quickens because the first place I go, no matter why I'm there, is to the windows where Dave and Mary Ellen sit. I met Dave and Mary Ellen because it is their job to process my lab documents. They interface with the public all day with grace and resourcefulness. For me they are an indomitable source of energy, encouragement, kindness and inspiration. They can transform a routine or a daunting visit into an uplifting experience just by the way they greet me, express their concern about my progress and tell me how great I look (even when I don't). They have given me strength and courage on days when I didn't even know I needed it. This Thanksgiving as I think about all for which I am grateful - Dave and Mary Ellen will be on the list.More reasons for gratitude- My cancer marker (CA125) has dropped to 22 (35 is normal and we started at 574). My oncologist described it as "miraculous". He says he considers me in remission but we are still waiting for a normal CT scan. Treatment course is as follows: continue IP (10 treatments left with the last treatment on Jan 31). Next I will have 5 treatments of Avastin three weeks apart staring in mid February. Avastin is an experimental drug which destroys the blood vessels that feed the tumors. Dr. Krivack believes that it will soon be standard protocol for ovarian cancer and according to the chemo nurses the side effects are minimal. That puts us at the end of May for treatment so I'm tentatively scheduling my remission party for sometime in June. More details to follow. Tim and Kimberly threw us a celebration dinner last night. This news is extremely encouraging. A close second was the Steelers victory over Oakland on Sunday. Thanks to Kristin today for round two as my chemo buddy.
I wonder if my CA125 developments had anything to do with the stern conversation I had with G_d at the synagogue on Friday when I berated her for not sparing my eyebrows. I pointed out that I had been a damn good sport about losing my hair and I knew that eyebrows were within her discretion. I let her know in no uncertain terms that I was due for a break. Looks like she heard me.
Update: Thanks to my new false eyebrows I no longer look like an egg.
Next post will profile my new wig and brows!
Monday, November 22, 2010
Easy Catch
On weekends as a family we would often watch sports on TV. As a matter of fact, for a while the Tocci kids believed that the only programing available on TV was sporting events. We would watch the great players, Willie Mays, Lynn Swann, and Ron Swoboda effortlessly excelling in their respective sports. Once in a while we would see that incredible play, the diving catch in the bottom of the 9th to save the game, the tightrope walk in the end zone to win in overtime, and we could predict what our Dad would say next.
"That was an easy catch. He just made it look hard".
As I read MJ's posts, seems this cancer is not so hard. Yeah, OK, a few new wardrobe changes, a few days of being cranky (more that usual), big deal. She almost makes it easy to forget the physical and phycological issues she has had to deal with over the past many months. The point is Dad, MJ got the quote wrong.
"That was a hard catch. She is just making it look easy".
Along those lines, I did want to mention that living in Boston the past 20 some years has been educational. Yes, the Republicans fared reasonably well in most states. We got Barney Frank again.
In Beantown we received a visit from Uncle Tim last week. Wouldn't you know he arrived just before the gametime when the Steelers were playing the New England Patriots. The Terrible Towel Toting Tocci came into town with guns blazing looking for a bet. We here are used to the simple life, and when he sugested a wager on the game we were not accustomed to or prepared for that type of competive confrontation.
The line in the paper was favoring the Steelers by 5. Just before game time we received a call from daughter Catherine. She informed us that Timmy had called her at school earlier and requested a bet, and she was given the Patriots and gave up the 5 points. I was upset and told her she got it backwards, the line should have been her getting the 5 points. My poor daughter did not do Pap Pap proud. She lost on the first tee, and was take advantage of by an older and wiser trusted relative. I told her that the Patriots looked so bad against Cleveland the prior week she mind as well pay up early.
She assured me not to worry.
Well the Pats crushed the Steelers, and when I spoke to her the next day to discuss investment of her winnings and ask her how she knew, she informed me that the Patriots were 24 and 1 in games following a loss in the prior week. It was in the bag from the get go. She said...
"That it was an easy bet. I just wanted to make it look hard".
These Tocci women all make Pap Pap proud.
"That was an easy catch. He just made it look hard".
As I read MJ's posts, seems this cancer is not so hard. Yeah, OK, a few new wardrobe changes, a few days of being cranky (more that usual), big deal. She almost makes it easy to forget the physical and phycological issues she has had to deal with over the past many months. The point is Dad, MJ got the quote wrong.
"That was a hard catch. She is just making it look easy".
Along those lines, I did want to mention that living in Boston the past 20 some years has been educational. Yes, the Republicans fared reasonably well in most states. We got Barney Frank again.
In Beantown we received a visit from Uncle Tim last week. Wouldn't you know he arrived just before the gametime when the Steelers were playing the New England Patriots. The Terrible Towel Toting Tocci came into town with guns blazing looking for a bet. We here are used to the simple life, and when he sugested a wager on the game we were not accustomed to or prepared for that type of competive confrontation.
The line in the paper was favoring the Steelers by 5. Just before game time we received a call from daughter Catherine. She informed us that Timmy had called her at school earlier and requested a bet, and she was given the Patriots and gave up the 5 points. I was upset and told her she got it backwards, the line should have been her getting the 5 points. My poor daughter did not do Pap Pap proud. She lost on the first tee, and was take advantage of by an older and wiser trusted relative. I told her that the Patriots looked so bad against Cleveland the prior week she mind as well pay up early.
She assured me not to worry.
Well the Pats crushed the Steelers, and when I spoke to her the next day to discuss investment of her winnings and ask her how she knew, she informed me that the Patriots were 24 and 1 in games following a loss in the prior week. It was in the bag from the get go. She said...
"That it was an easy bet. I just wanted to make it look hard".
These Tocci women all make Pap Pap proud.
Thursday, November 11, 2010
Shout Out For Veterans Day
I am a passionate liberal democrat who loves Veteran's Day! This is not an oxymoron.
Today Sam and I went to the cemetery to visit my parents as my dad was a WWII vet who always thought it important to honor our veterans and celebrate this day. Dad enlisted in the navy at 18 and was an electrician on the USS Carr, an aircraft carrier in the Pacific. He was of course captain of the ship basketball team. Uncle John parachuted into Normandy, Cousin Lee served in Vietnam, Tom flew helicopters in Panama and brother Tim flew P3 Orions and served in the first gulf war.
As if we were in a Normal Rockwell painting we happened upon the Blairsville Veterans Day parade. Blairsville, population 3500 is 43 miles east of Pittsburgh in the Conemaugh River Valley with the Conemaugh River forming 180 degrees of the town's perimeter border. It was a mill town connected by a railroad stop to the coal mines. It is also the home of my maternal ancestors and where my parents, maternal grandparents, aunts and uncles are buried except Uncle John and Aunt Mary Jane who rest in Arlington Cemetery. The parade was spectacular and the enthusiasm of the spectators equally so. It included the Blairsville High School marching band, baton twirlers, volunteer fire department, girl scouts, boy scouts, and of course veterans from several wars who walked or drove down main street in Blairsville. I cried as I cheered and waved each veteran on and cried again when I heard the national anthem and saw the vets proudly put their hands to their hearts. I remain haunted by how badly our Vietnam Vets were treated upon their return home and I felt a surge of patriotism watching these vets marching - old, young, healthy, fragile in their assortment of uniforms. Most of us can't appreciate what they've done for us or the sacrifices they've made. The notion that we liberals aren't patriotic and don't care about Veterans is pure fiction. So many of us care deeply and appreciate greatly what our vets have done for us and our country. Thank you veterans with a special shout out to Dad, Uncle John, brother Tim and cousins Lee and Tom for your service to our country. Thank you dad for helping me understand how important it is to say thank you on this day.
It was a glorious day at the cemetery, 70's, sunny with color still in the trees overlooking the valley as Sam and I sat on our yoga mat telling stories about mom, dad and the entire family assembled there. Our memories are vivid and this is a way of keeping them so. I really miss them. They taught us how to be a family and how to be there for each other and I have been a recent beneficiary of what Jackie calls our mighty army of cousins. There is comfort in knowing how much of all of them lives on in us.
Sam selected the music for the trip and we sang together reminiscent of our family trips to Blairsville when the 5 Tocci's sang in 4 part harmony. We asked mom to just mouth the words. Gratitude is the watchword for the day.
Tuesday, November 9, 2010
We plan, god still laughs!
I hate it when things don't go the way I plan them! I expected a down day from chemo last Thursday and then planned to pop pack into the swing of things by Friday. I had also planned a normal weekend which included attending the Women and Girls Foundation event Saturday night. Instead, Friday was a lousy day- I was tired and sad and had a cough that was keeping me from sleeping. Saturday was worse- especially emotionally and I couldn't go to the event on Saturday night which was so disappointing. I was just spent. It wasn't until Sunday that I was feeling any energy at all but I was still very depleted. My friend Batia put the best perspective on it when she called to say "I'm so relieved to hear that you are depressed- it you didn't get here once in a while I'd worry that you weren't calibrated correctly". She then reminded me that being the super human cancer warrior wasn't who I needed to be, especially all the time. So I put my cape in the closet and rode it out. My reiki session on Sunday helped tremendously and by Sunday night I was accepting that not being at the top of my game had to be OK.
As always happens, I wondered on Sunday night why I was dragging my friends with me to chemo and by Monday morning I was so thrilled when Marlene arrived at my door to be my chemo buddy. The time flew by and she was such an upbeat and positive force. I left the session feeling so much better than when I went in thanks to Marlene, a few steroids and Heather the world's best chemo nurse. This chemo session even came with catering and Marlene brought fabulous sweet potato soup. I have the most interesting friends- how lucky is that!
Had to cancel my business trip to LA this week which was disappointing but a recognition that taking care of myself is actually important. It's amazing how bad we all are at taking care of ourselves on so many levels. I'm learning, slowly and painfully that we all have to address this deficit or it comes back to haunt us later.
Connected with my friend Liz who is recovering from a stroke, my friend Linda who is back in chemo from a 12 year remission for ovarian cancer, and several other dear friends facing daunting medical or emotional obstacles. When my friends started to get sick- sometime in my forties- my father advised me that this was not an aberration but rather a part of life- He laughed when I told him that I was too young for my friends to be getting sick and cautioned me that I would face challenges too, no matter how healthy I felt then. "Don't be surprised, just deal with it as a part of life" were his words to me. I'm going to the cemetery on Veterans day to tell him how right he was.
The weather had been glorious and my daily walks with Kristin and sometimes Nancy with our golden-doodles in tow have been truly energizing. Watching the Steelers almost blow a 20 point lead last night was not energizing. Yoga with Stacy today was energizing; living with teenage mood swings is not always energizing. Life is rich.
As always happens, I wondered on Sunday night why I was dragging my friends with me to chemo and by Monday morning I was so thrilled when Marlene arrived at my door to be my chemo buddy. The time flew by and she was such an upbeat and positive force. I left the session feeling so much better than when I went in thanks to Marlene, a few steroids and Heather the world's best chemo nurse. This chemo session even came with catering and Marlene brought fabulous sweet potato soup. I have the most interesting friends- how lucky is that!
Had to cancel my business trip to LA this week which was disappointing but a recognition that taking care of myself is actually important. It's amazing how bad we all are at taking care of ourselves on so many levels. I'm learning, slowly and painfully that we all have to address this deficit or it comes back to haunt us later.
Connected with my friend Liz who is recovering from a stroke, my friend Linda who is back in chemo from a 12 year remission for ovarian cancer, and several other dear friends facing daunting medical or emotional obstacles. When my friends started to get sick- sometime in my forties- my father advised me that this was not an aberration but rather a part of life- He laughed when I told him that I was too young for my friends to be getting sick and cautioned me that I would face challenges too, no matter how healthy I felt then. "Don't be surprised, just deal with it as a part of life" were his words to me. I'm going to the cemetery on Veterans day to tell him how right he was.
The weather had been glorious and my daily walks with Kristin and sometimes Nancy with our golden-doodles in tow have been truly energizing. Watching the Steelers almost blow a 20 point lead last night was not energizing. Yoga with Stacy today was energizing; living with teenage mood swings is not always energizing. Life is rich.
Tuesday, November 2, 2010
Good numbers
Sorry I left you hanging after my last post- much good news to report. I went to Chicago for my first business trip to work with my dear friends Frank and Holly and the great folks at Latham and Watkins for their Advanced Trial Program. It was thrilling to step back into the game and still be able to play at a level that was very satisfying. The firm was beyond hospitable and the experience chocked up another "new normal". I passed on the evening activities and was in bed by 7:30 each night. I was sorry not to see any of my Chicago family but the evenings were destined for extra rest this time.
I feel great and am up to almost my former energy level. Just bought jeans (size 4 and 6)- been waiting for this moment for 20 years but I don't recommend this diet regimen. I am actually trying to gain weight which is way more challenging than I could ever have imagined. No- I'm not expecting much sympathy in this department.
I had chemo yesterday and have another one today at noon with reiki in between. My plan is that reiki will make the rest of this week easier. Still using reiki, yoga and mediation to manage both the physical and emotional side effects and will continue to use them well past my remission- they are now important ingredients for daily coping with whatever comes my way.
MORE GOOD NEWS: When I had chemo yesterday I got the results of my CA125 (cancer marker). When I was diagnosed it was 574 (astronomical) then last test it was down to 84 and NOW it is 34 (35 is normal but my oncologist wants it under 30). I was thrilled with this news. The internal exam was also normal which leaves us waiting for normal CT scan results. Last time there were still tumors present but they were shrinking so we have every reason to be hopeful that this trend will continue. The CA125 news together with the exam results had me in great spirits yesterday.
Kristin was my wonderful chemo buddy for a long day but then we did a quick turn around and went to watch Sam's friend Evan play soccer for the city championship- they lost but I remembered how much I enjoyed watching high school sports. Sam is joining the swim team and Zoe has started piano lessons (at her request!). Jonathan is in negotiations with WQED to produce middle school science training films for teachers. The work seems to be fascinating and will tap his many talents. He is very excited about this and we are so proud of him. We are working on finding funding for our documentary Changing the Face of Science which is about pathways to success for girls in math and science. My work with my favorite clients on Women's Initiatives in law firms is beginning to get back on track and I have really missed it.
Brother Tim still struggling with back pain which he refuses to complain about so I have to get the straight scoop from Kimberly his girlfriend. Keep him in your prayers as well- he could sure use some relief after his medically challenging year. He takes such good care of me and continues to be a huge source of support. Brother Joe keeps me laughing with the funniest emails imaginable. He promised not to taunt me tomorrow with election results likely to put him in good spirits and me booking flights to Canada.
Your support and prayers are working- keeping me sane and hopeful and energized. Many thanks for the meals and posts and emails and calls. I need them and appreciate them greatly.
Cheers
MJ
I feel great and am up to almost my former energy level. Just bought jeans (size 4 and 6)- been waiting for this moment for 20 years but I don't recommend this diet regimen. I am actually trying to gain weight which is way more challenging than I could ever have imagined. No- I'm not expecting much sympathy in this department.
I had chemo yesterday and have another one today at noon with reiki in between. My plan is that reiki will make the rest of this week easier. Still using reiki, yoga and mediation to manage both the physical and emotional side effects and will continue to use them well past my remission- they are now important ingredients for daily coping with whatever comes my way.
MORE GOOD NEWS: When I had chemo yesterday I got the results of my CA125 (cancer marker). When I was diagnosed it was 574 (astronomical) then last test it was down to 84 and NOW it is 34 (35 is normal but my oncologist wants it under 30). I was thrilled with this news. The internal exam was also normal which leaves us waiting for normal CT scan results. Last time there were still tumors present but they were shrinking so we have every reason to be hopeful that this trend will continue. The CA125 news together with the exam results had me in great spirits yesterday.
Kristin was my wonderful chemo buddy for a long day but then we did a quick turn around and went to watch Sam's friend Evan play soccer for the city championship- they lost but I remembered how much I enjoyed watching high school sports. Sam is joining the swim team and Zoe has started piano lessons (at her request!). Jonathan is in negotiations with WQED to produce middle school science training films for teachers. The work seems to be fascinating and will tap his many talents. He is very excited about this and we are so proud of him. We are working on finding funding for our documentary Changing the Face of Science which is about pathways to success for girls in math and science. My work with my favorite clients on Women's Initiatives in law firms is beginning to get back on track and I have really missed it.
Brother Tim still struggling with back pain which he refuses to complain about so I have to get the straight scoop from Kimberly his girlfriend. Keep him in your prayers as well- he could sure use some relief after his medically challenging year. He takes such good care of me and continues to be a huge source of support. Brother Joe keeps me laughing with the funniest emails imaginable. He promised not to taunt me tomorrow with election results likely to put him in good spirits and me booking flights to Canada.
Your support and prayers are working- keeping me sane and hopeful and energized. Many thanks for the meals and posts and emails and calls. I need them and appreciate them greatly.
Cheers
MJ
Monday, October 18, 2010
.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
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
Sunday, October 17, 2010
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!
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!
Monday, October 11, 2010
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
Monday, October 4, 2010
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.
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.
Wednesday, September 29, 2010
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)
Monday, September 20, 2010
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.
NOTE: When you post a comment please include your name. The comments often show up as anonymous and we want to know who you are.
Love to you all,
MJ
Saturday, September 11, 2010
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.
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.
Saturday, September 4, 2010
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!
Wednesday, September 1, 2010
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!
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!
Thursday, August 26, 2010
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.
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.
Wednesday, August 25, 2010
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.
Tuesday, August 24, 2010
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)
Sunday, August 22, 2010
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
Saturday, August 21, 2010
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
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
Thursday, August 19, 2010
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!
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!
Monday, August 16, 2010
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
Sunday, August 15, 2010
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 18th 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
Friday, August 13, 2010
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 :(
Saturday, August 7, 2010
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!
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!
Tuesday, August 3, 2010
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
Friday, July 30, 2010
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
Thursday, July 29, 2010
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
Tuesday, July 27, 2010
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
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
Saturday, July 24, 2010
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
Thursday, July 22, 2010
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
Sunday, July 18, 2010
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
Saturday, July 17, 2010
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!!!
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!!!
Wednesday, July 14, 2010
Tuesday, July 13, 2010
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
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
Saturday, July 10, 2010
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
Thursday, July 8, 2010
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
Tuesday, July 6, 2010
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
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