Denied

Today the FDA denied Roche's application for fastrack approval of TDM-1 based on what seems to be a technicality. It was generally thought, given the convincing results of Phase II trials conducted in heavily pre-treated woman, that the drug would be approved for commercial use in the first months of 2011. It has now been delayed until at least mid-2012.

You can read the full story here.

This is devestating news for women with HER2 positive breast cancer. This development does not affect me directly because I am guaranteed, through my participation on the clinical trial, to have uninterrupted access to TDM-1 as long as it continues to work for me. But indirectly, I am sad, mad and frustrated for the thousands of women who did not qualify for clinical trial (the requirements are very specific) and will run out of time before 2012 arrives. I know I would have, had I not been accepted into the trial.

TDM-1 (not at all discounting divine intervention) has saved my life, plain and simple. It is a travesty that women who have no other options cannot receive this drug.

I certainly understand the importance of properly conducted clinical trials. I definitely believe that drugs, before they are released to the public, need to be thoroughly evaluated. But why isn't there a provision for the compassionate use of drugs which, though not completely evaluated, show such promise that they just might turn the tables for someone who has no other option and is surely going to die without at least a try? It seems to be only humane.

In the meantime, keep at it, Roche--and I'll keep providing you the data you need to help bring this baby to market.

At Last It Has Arrived

This year we officially gave up the pretense--we are not a soccer family, or a baseball family or a basketball family. We have participated in those sports in the past only to kill time until the real action begins, so this year we didn't bother. We just waited. Patiently. And now it's time!

Last night Joey and Sam both opened their season with a scrimmage and did pretty well. They missed some blocks, they were not perfect, but overall it seems that we are in for a great season. Both boys are playing first string offense, Joey at Tight End and Sam at Tackle. This is a huge accomplishment for Joey in particular, as he has worked hard for two years to have a chance on the starting line. Joey is also starting Defensive End and loving it. Jay caught this action in particular last night:

This is Joey charging the running back behind the line of scrimmage. He completed the tackle, resulting in a loss of 5 or 6 yards for Palmdale. Good times, good times.

This, of course, is Sam. He shows a lot of promise and has no fear, so I think he will have a great season. By the second half last night he found his groove and was consistently driving his opponents back a number of yards. Number 68, by the way, was Jay's high school number, so it's pretty neat to hear them call another Di Silvestri by that number over the loudspeaker.

Welcome to fall--we are definitely fans!

Two Weeks Under His Belt

For those of you wondering what I finally decided to do with my little man Tony, here is a photo of him at pick up time during his first week of Kindergarten at Valley View, our local public school.

So far, he absolutely loves it and I feel comfortable that I made a good decision. We are calling this "Kindergarten 1", and he knows that he will be going to Sacred Heart next year for "Kindergarten 2."

Only time will tell if this was the right thing to do, but as parents all we can do is the very best we know how to do at any given moment...and for me, this was it.

Thanks to you all for your willingness to share your opinions and experiences in this matter--ulitmately, it was all of your comments that let me to my decision.

Scanxiety Alleviated

Just got the results of my latest PET/CT and bone scans...everything is stable, thanks be to God.

My favorite quotes:

-"No evidence for solid organ metastases." (Hello, beautiful liver of mine!)
-"Stable metastatic disease to the axial and appendicular skeleton without metabolic activity."
-"No new nodules."
-"Subcentimeter right and left axillary and subpectoral lymph nodes remain stable."

What does it say about my life that these lines read like the finest poetry to me? (That is a rhetorical question, by the way.)

So, to summarize, some disease remains and doesn't seem to be going away. However, it is not active or growing, nor is it on a vital organ, so it does not impact me at the moment. Treatment will continue as is for another nine weeks, at which time we will scan again and see where we are.

Here's to another nine weeks. Yippee!

The Good Archbishop

Last week Jay had the pleasure of meeting Archbishop Jose Gomez, the new co-adjutor archbishop of Los Angeles, in a small group setting. The Archbishop celebrated mass, visited both before and after with the attendees, and stayed for dinner as well. Jay was particularly impressed that Archbishop Gomez was among the first to arrive and the last to leave, making sure all who wanted to speak with him had the chance to do so.

All reports of the Archbishop's kindness, generosity of self and obvious love of Christ were confirmed by Jay, who was beyond thrilled to have the opportunity to speak with him during the evening. Jay told the Archbishop about me and asked for his prayers on my behalf, which he readily agreed to offer, even asking Jay my name twice to be sure he had it right. Quite humbling for me, I assure you!

We are very fortunate indeed to have this man as our new Archbishop. I wish him all the best in his tenure in Los Angeles.

Health Update

It has been awhile since I've posted anything about my health (how's that for a postive change!?) and I know many of you are wondering how I'm doing, so I thought I'd take a minute to share what's been going on.

Right now I am exactly where I want to be: my last few scans have shown no active cancer, only evidence of where cancer has been. My doctors tell me that Stage IV cancer cannot be cured, which means that even when the cancer is inactive and too small to be seen, it is still there lurking and a potential threat. Therefore, they use words like "control" rather than "cure", and "stable" rather than "clear". At the end of the day, this is all just semantics, and the summary is that I'm doing as well as I could possibly be doing and can potentially remain in this state for years to come.

Or, it could all change at any time, which keeps things exciting.

I will continue with my treatments of TDM-1 every three weeks as long as my liver can process the medicine and as long as my heart muscle is not damaged by it. So far, both of these measures are just fine. The treatments vary in how hard they hit me--some are hardly noticible and some deal me a bit of a blow, but nothing life-stopping. I am truly fortunate in this, as it means that I can continue treatment without giving the cancer a break to regroup, as I would need to if I were on traditional chemo.

I will continue to be thoroughly scanned every nine weeks as long as I am in treatment. I will always post those results here as I get them. My next scans are this Thursday and the following Monday so look for news probably around the end of next week.

I will not be having surgery. My oncologist and surgeon agree that once the cancer has spread around as mine did, there is no benefit to surgery at the original tumor site. Plus, there is no detectable tumor left in the breast anyway, so they would basically be cutting off a healthy breast to prevent nothing. I am good with this.

So, that's about it for now. The medicine is working beautifully, I feel pretty good most of the time (more often than not I feel normal, which was unexpected six months ago), and I am hopeful for a good, long run at this status quo.

Thanks for keeping me in your thoughts and prayers for so long.

Decisions, Decisions

Tony's birthday is in July. Since he just turned five, he is eligible to start Kindergarten at Sacred Heart this year and, until recently, I had no doubts that he would be doing just that.

In the last few weeks, however, I have been strongly contemplating holding him back for a year and having him start Kindergarten next year when he has just turned six. If I send him now he will be the youngest in his class (or close to it), and if I wait he will be among the oldest.

I have heard many arguments in favor of holding him and few in favor of sending him. He himself likes the idea of going to our local public school for a year of Kindergarten before starting "for real" at Sacred Heart, especially since his very good friend will be doing the exact same thing. This is the same public school that gave Joey such a positive experience, so I do not worry about sending him there in general.

By all tests, Tony seems ready to start Kindergarten. Yet, giving him an extra year to mature (especially since he is a boy, and since our children are notoriously handwriting challenged anyway) and develop his fine motor skills seems like it might give him confidence in the long run. If he ends up struggling academically, I will always kick myself for not having done this. Plus, if he ends up being bored, I can move him up easier than hold him back later, right?

I am interested to see if any of you have an opinion about this. Valley View starts on Monday, so I am going to have to make a final decision over the weekend one way or another. Have any of you held your children back or started them early? What have you done with your "summer birthdays" and how have they fared? Any advice or thoughts are appreciated!

Bypassed

The fire moved southeast and passed us by. The house smells like smoke and the sky is gray and ashy, but thanks be to God we are all fine.

Bless the firefighters who have been up all night defending our homes and may they continue to be successful as the fire threatens other parts of Palmdale!

New Fire Photo

Here is the current situation, as viewed from Lindsey's window. The power of nature is astounding...makes one feel very small and insignificant.

Fire!

It's big, it's moving fast, and it's too close for comfort. Please pray for all of us who are in the path of this beast.

Above is the current view from Lindsey's bedroom window (a bit blurry, but you get the idea).

My mother in law, who lives about a mile and a half away from us, was just evacuated, so we are preparing to go as well. No small feat for a family of our size, to be sure.

Hopefully it won't come any closer. Hopefully the ring of fire fighters waiting for it at the bottom of the hill will knock it out before it threatens us. Hopefully no one will lose their lives or their homes.

Off I go, to decide what goes and what stays. Talk about a grounding prioritization! I'll keep you all posted, of course...

Sibling Rivalry

Today Joey and Lindsey spent a decent amount of time trying to outdo eachother as to who had the better school schedule.

Joey goes from 8 to 1:55, Lindsey from 8 to 3. They have (I think) the same number of school days in a year, but Joey starts earlier with longer vacation times throughout the year.

As they argued the merits of their particular situations, it became evident that they were near parity. It came down, finally, to that extra hour or so that Lindsey has four days out of the week (she gets out early every Friday).

I explained to Lindsey that her extra time must be so that religion could be taught, as she goes to a Catholic School. Public schools don't teach that subject so they can have a little less time. I went on to assure her that Joey, too, had religious instruction, but with me in the evenings. Therefore, I tried to help them conclude, they ultimately had the same amount of time in school each year.

Joey, not one to lose any argument at all, quickly came back with, "Ha! My religion only takes us 15 minutes, so I win! You have an hour!"

Lindsey gnawed on that for a few moments. Then, with her voice reflecting all the desperation of a sinking sailor, she wailed, "Maaaaawwwwm! You HAVE to make Joey's religion longer!"

Yeah, I'll get right on that. So they can find something new to compete over.

Vacation

Sorry for the very sparse blogging, folks, but I am enjoying some time off with my family in Northern California. We are on our annual visit to Marin County where some of our kids are attending Bible Camp at St. Rita (our former parish), Joey is at another week of football camp, and I am hanging out with the three little ones being domestic in someone else's house (which we all know is WAY more fun than being domestic in our own homes!).

It has been a really great week. Tony turned five on Monday and is enjoying his new Buzz Lightyear suit immensely. We are staying with his godparents so it was extra special to spend his birthday with them. Tuesday we had dinner with friends from my Dreyer's Grand Ice Cream days and had so much fun catching up.

Yesterday Jay and I went to mass at a church in Sausalito where we had heard our former pastor (the one who brought me into the church and baptized my first four children) was now retired. Luckily, he was presiding and we got to visit with him for awhile after mass. It was so good to see him and we were happy to learn how well things are going for him now. He prayed over me especially for my total healing.

Today the kids went to the beach on Tomales Bay where they saw dozens of jellyfish washed up on the shore. Sam, especially, had fun with that. Tomorrow Joey will visit Angel Island (his camp ended today and was a great opportunity for him to work out at wide receiver before hell week begins with his regular team on Monday) with a friend.

Jay is working from here and enjoying lots of peace and quiet to do so in the detached cottage at our friends' house. I am cooking, cleaning, doing laundry and taking the kids to the playground. Best of all, I'm watching lots of chick flicks with my dear friend Tina and eating way too much dessert. My carb reduction plan is reduced this week, and I'm totally OK with that.

I hope you are all enjoying your summer and I will try to get back into a more regular blogging routine when I return home on Monday.

Blast from the Past

Remember this guy?

Clearly, the picture is not that great, as his head is cut off by the tree, but I had a toddler and a three year old on the loose, so cut me some slack...I did what I could!

Bella, who is newly potty trained (thank goodness), had me turn off the I-10 in a hurry on Saturday to make a pit stop. Imagine my delight when I found the famous "world's largest" dinosaurs that I remember so well from my childhood. I didn't even know they were still around! I would never have thought to even look for them, much less realize that we were anywhere near them. So, thanks to Bella for her urgent bathroom visit that sent me down memory lane.

What was I doing on the I-10, you may be wondering? I dropped Lindsey off at camp in the San Jacinto mountains, somewhere inbetween Hemet and Palm Springs. I went through Hemet on the way up so I decided to go through Palm Springs on the way back. I'll be heading back on Saturday to pick her up. Which way to go, which way to go?

Perhaps the dinosaurs will help me decide!

Just for Fun

A friend sent me this optical illusion. Give it a try if you have some time to kill!

***

Fond Memories

Sam, Joey and Jay are in Marin County this week so the boys can attend football camp. Joey is staying with a friend he is still in contact with from his kindergarten and first grade days at St. Rita School, so Jay and Sam are enjoying lots of time together, just the two of them.

This morning Jay took Sam out to breakfast at a coffee shop where we nearly always had breakfast after mass on Sundays. Sam (who was just turning 4 when we moved) remembered the place right away. He surprises me constantly with how much he remembers from his early years in Marin.

This quote demonstrates just how well he recalls it:

"Oh, I remember this place! Joey tied my shoelaces together and I fell down right there!" As he said this, he pointed enthusiastically to the exact location in the restaurant where he hit the ground.

Now, I remember the place more for the waffles, but we all have our favorite memories, right? How nice for Sam that he can relive that one.

So Tired

Dishes make me feel like this too. I totally get it.

What I don't get is how she managed to stay on the stool after she fell asleep. When I first walked in the kitchen and saw her like this my heart stopped!

I'm thinking that perhaps I missed a few "I'm tired" cues that would have led me to put her to bed before it came to this. But since I didn't, we now have this great picture!

Marriage By The Numbers

Years Married Today: 15
Children Born: 7
Children Loved But Not Born: 1
Communities Lived In: 2
Houses Owned: 3
Dogs Loved (or Endured, depending on which one of us you are): 2
Other Animals Housed: 2 cats, 1 hamster, 1 guinea pig, 4 fish
Trials Endured: A Few
Trials to Come: Only God Knows--but we'll survive them together!
Blessings to Count: Innumerable
Duration Ahead: 'Till Death Do Us Part

Happy Anniversary, Jay--I love you!

It's All Part of Nailing the Cancer, I Guess

I have had it pretty easy through this whole cancer thing. A little fatigue, a little nausea, some anemia...at worst, it's been like the intense part of first trimester pregnancy. I recently told a friend that I have managed to contract the Disney version of Stage IV cancer, if there is a such a thing, and for this I am truly grateful.

HOWEVER, today I feel the need to log my first real complaint about all of this. This week, after treatment 10, my fingernails have suddenly betrayed me. I know, I know, you are thinking, "Seriously, is she really going to complain about her FINGERNAILS when she is giving cancer a fatal blow with minimal side effects?" Well, yes, I am. And then I'm going to feel ashamed about it later.

I have always had strong, long fingernails. This was true even before my pregnancies, but childbearing served to enhance their growth and strength further. I wouldn't go so far as to say I was proud of my fingernails, but I will say that I had come to comfortably rely on them as tools. I used them to pry things open, parse and cut things and generally make my life easier.

This has all ended for me. All of a sudden, my nails have begun bending backward, splitting to the quick and breaking off, from simple activities such as rotating the laundry or even reaching for my shoes. So, today, I mourned their loss and cut them all back to the quick. Sniff.

As I gaze at my stubby fingers or find myself reaching for a knife to do the job I once could do unassisted I will try my hardest to remember how lucky I am in all other aspects of this. But I'm allowed a brief mourning period for this small sign of my loss of health, aren't I?

I thought you'd agree.

Eyes Wide Open

As I was praying my rosary this morning (as you all know, that is when I have my "deep thoughts"), I was thinking about why Jesus was at first unrecognizable to his disciples after his resurrection.

Mary Magdalene thought Jesus was the gardener when she saw him outside of the tomb. The seven disciples by the Sea of Tiberius did not recognize him when he asked about their fishing. The men walking to Emmaus had a lengthy conversation with him about his own crucifixion without realizing it was him. It was only later that their eyes were opened and they all realized that they had been talking to the resurrected Jesus.

What could be the reason for this, I wondered? Why would so many not recognize right away and need their eyes opened for them to see what was right in front of them?

I did not wonder long before I knew the answer: Jesus is in all the people around us, whether we can see him or not. Often we need our eyes opened to see him, but he is there. Not in body, as was the case with the befuddled disciples, but just as real.

He is there in our spouses, our parents, our children, our friends. It is easiest to see him there, in those who are good to us or who treat us as we imagine Jesus would--with loving care and concern. But he is also in those who don't treat us as they should. Those who drive us crazy, those who we judge.

Our eyes are opened to his presence in these difficult people when we allow ourselves to see. We see the opportunities these people provide us to work on our patience, our compassion, and our Christian kindness. We see the needs that these people have that cause them to act the way they do, needs that we can often help fill. The need for acceptance, love, or understanding. When we see these thing, we see Jesus in everyone, and our eyes are opened.

Is this easy? Of course not! It is nearly impossible. But nothing is impossible with God. Lord, may my eyes be opened to see.

Further Evidence I'm Failing Completely As A Parent

Joey: I'm bored.

Me: Don't ever say that in this house or you'll quickly find yourself doing manual labor.

A pause...

Joey: OK, then. I'm unsatisfied with today's entertainment.