Where's McDreamy?

Life has been a medical drama as of late. I would so much rather watch this all on Grey's Anatomy with a big bowl of popcorn than experience it all myself! Nonetheless, after many stressful days we have had a number of happy endings that I thought I would share.

First of all, Joey has had a very swollen lymph node under his jaw for over a month now. It is just about a square inch in size and is very noticeable. It looks like he's storing a golf ball or a walnut in his neck. His pediatrician tried antibiotics, thinking it was infected. They did not help, so he was referred to an Ear-Nose-Throat specialist. That doctor ordered a CT scan, a fine needle biopsy and six buckets of bloodwork. After nearly two weeks of waiting, we have finally learned that the biopsy is non-cancerous (as you can imagine, that is what we were mostly worried about given my history) and shows, basically, nothing at all. He has now been referred to a Pediatric Infectious Disease specialist at UCLA for follow up. I spoke to this new doctor on the phone today. After reviewing Joey's case he feels that this is probably a non-specific viral infection (in other words, something we humans haven't identified yet) that will probably resolve on its own in a few months. He will see him next week and will follow through with him until it is resolved, but he basically told me not to worry, so I will try not to! Whew!

Meanwhile, I myself had my routine PET/CT last week and received the results yesterday. Overall, the scans look great as far as the cancer is concerned, but I have developed some sort of lung infection (as anyone who has seen me in the last six weeks can attest to, since I can hardly make it through a sentence without coughing). I now have a pulmonologist who is reviewing my scan images and may or may not decide to stick a tube down my throat in the next few days to pull out some of what's in there and analyze it. The fun just keeps on coming! He assures me that, given the relaxation drugs they will give me to keep me from gagging, I might actually thank him rather than hate him after the procedure. I will reserve judgment on that.

My oncologist's concern is the possibility that my anti-cancer drug is causing this infection, which is why he is so all over this. Since my drug is untested, he has to be careful with any side effects that show up, as they could be medication-induced. It is probably a standard cough, especially since Jay and Lindsey also had one, but, as Dr. Glaspy put it, he did not save me from cancer to watch me die of a lung infection that he could put a stop to. Have I mentioned that I like him? A lot? Well, I do.

So, that's about it from here. I have to close so I can go pick up Julia from school--they just called to tell me she's sick. Why am I not surprised?!

Happy National Metastatic Breast Cancer Awareness Day

You've probably noticed that it's "Pink October". Everywhere you look there are pink ribbons intended to make people aware of breast cancer. I think we can safely say that, by now, just about everyone is aware of it.

Most of the time, breast cancer reports are accompanied by survival stories--courageous tales of women who have taken a stance against this nasty disease and beaten it. Happily, there are many such stories.

Very rarely does a news report focus on those 160,000 or so of us that are living with metastatic breast cancer--that which has spread to other parts of the body. This is probably because there aren't very many happy endings in this subset of cancer patients. It is not inspiring to fund research for those who, statistically, only have an average of three years to live. People want to help those who can win, and more often than not those with early stage breast cancer CAN win. So I completely understand this focus.

Many women with metastatic breast cancer feel left out and overlooked. I know this because I am active on discussion boards for those in my situation. Although I personally am delighted by any research or awareness done, as it ultimately benefits us all, I nonetheless am happy to report that today is National Metastatic Breast Cancer Awareness day. The intent of this day is to educate the general public about those of us living with more advanced breast cancer. And while, no, it's not curable like early stage breast cancer, it IS treatable, and we are living longer and longer with this chronic condition. I, for one, plan to be here much longer than average!

There is a nice article today about it in the Huffington Post, here.

Now that you know, have some cake or something!

Two Lessons Learned?

One thing about driving a fuel efficient car: it's not very fast going uphill. It COULD be, if I took it off of eco-mode, but since I got it for its gas mileage, I simply won't do that. Therefore, I have recently become accustomed to semi-irate people behind me, tailgating and gesturing until I can graciously move over and let them by. Now, I am not moving at unsafe speeds, mind you. I'm simply not engaging in the speed demonics of the drivers in my area, which irritates them to no end.

A few days ago, as I was moseying up a freeway on-ramp, I noticed a motorcycle so close on my tail that I could hardly see him in my rearview mirror. I was thinking to myself, "That's really not smart, to tailgate someone so closely especially when on a motorcycle."

Simultaneously, I noticed Bella, who in this car can easily reach the window button for the first time in her young life, dangling a little pink purse out the window. I had just finished talking to her about this on our last car ride. I explained that if she let go of whatever toy she was holding, she would never see it again. She seemed to take it to heart and rolled up her window at the time, but here she was just a few hours later doing it again. I had not noticed earlier or else I would have rolled up the window and engaged the lock.

Before I could fully process these two concurrent events, I witnessed, in my rearview mirror, the pink purse fly out of Bella's grasp and solidly thwack the motorcyclist in the head. Thankfully, he did not swerve or falter (for if he had, this story wouldn't be quite so amusing). I watched in horror as he removed one hand from his handlebars so that it could be put to maximum gesturing use. He shook his fist, he gave me a, "What the heck?!" and then he passed me on the left. All of this happened in a split second. Bella still hadn't even time to understand that she had lost her purse.

As I slowly began to understand what had just happened (about the time Bella let out the first of a solid 20 minute wall of wails), I was struck with the poetic justice of it all. Dangle a toy out of the window? You will surely lose it. Tailgate at a dangerous distance? You're sure to regret it.

How lovely to quite passively instruct both a preschooler and a motorcyclist in one fell swoop.

My Wish is Granted

There is a metastatic breast cancer conference in Indianapolis in mid-October that I really want to attend.

So much of the information and resources available on breast cancer are mainly applicable to early stage patients--once metastases are diagnosed, it is a whole different ball game, and this conference is solely dedicated to treatment and quality of life issues for those of us a little farther down the line with this disease.

I registered for the conference awhile ago thinking that I would use Jay's air miles to fly there. But, alas, when I went to book my flight I found that my travel dates were blacked out on all three of the airlines we use miles on. I had never considered that! So, I decided that our family had other financial priorities and set about canceling my plans.

As I was just about to notify the group of ladies I was planning to meet there (united through the message boards at breastcancer.org, a wonderful and active forum for those grappling with the ins and outs of breast cancer of all types), I took one last visit to the conference web site to see what I would be missing.

That's when I noticed the "grant" section. It stated that anyone with metastatic breast cancer who would not be attending the conference due to financial concerns could request a grant for airfare. I thought, "Hey, that's me!" So I wrote and asked for airfare.

Within a few hours, my grant was requested! Genentech (let me tell you, I am beginning to like that company more and more) and the Susan G. Komen foundation have sponsored my airfare so I can attend this conference without straining my family's finances. I am positively giddy!

So, off I will go in October to learn about all the latest and not-yet-to market treatments for metastatic breast cancer, to meet others who are taking the same drug as I am, to attend Q&A panels where I can ask every question I've ever had about all things cancer and treatment related.

I am delighted, and totally grateful for the opportunity.

I'll Bet She's Never Heard THAT One Before

Lindsey is working on a book report for school. As part if it, she has to write down the first sentence of the book she just read. This she will read out loud to the class when she presents her report later this week. No problem, right?

Wrong.

Lindsey came to me very upset because the first sentence of her Newbery Award Winning Book called Al Capone Does My Shirts has a *bad word* in it. Indeed, the phrase, "bird turd" happens to be in the very opening sentence of the book. Go figure!

(Although, if you know the book is about life on Alcatraz, and if you've ever been there yourself, you'd know why that was an appropriate opening line.)

"Mom!" she wailed, "I can't say 'turd' in front of the class! I'll get in trouble and they'll laugh at me!"

As I choked back my laughter and attempted to put on my concerned parent face, I assured her that she could not possibly get in trouble for following instructions for a book she is most certainly allowed if not encouraged to read. I read it myself so I know that it is a clean, decent book. It just happens to open with an attention-getter.

I suggested that if she was concerned that she should talk to her teacher about it. But, no. She is way too shy to broach this particular topic. So guess what I got to do tonight? That's right! I wrote a note. To Lindsey's teacher, telling her about this whole turd situation and could we please work something out, as Lindsey's progress on her report has stalled out of sheer panic.

As I wrote, I wondered if she had ever received such a note in her teaching career. I have certainly never written one like it. I'm also pretty sure I've never written the word 'turd' before today.

I think I liked my previous status better.

Today's Embarassing Preschooler Comment

Bella and are in mass today, at the really quiet part after communion, when out of the blue she announces loudly, "I miss my OLD daddy."

What?!

Who's her new daddy, that's what I'd like to know! (And probably so do the dozen or so people sitting near us that must have heard her.)

Update: Turns out, she was talking about her great grandfather who she never met. She finds it unfair that she never met our grandparents and has been asking to see pictures of them and so forth. Mystery solved! Just took me a few days to get to the bottom of it.

Insightful

We have a new car! Well, it's almost 2 weeks old now, but that's still new, right? I'm bubbling over with enthusiasm for it, so I just have to share.

After examining our budget and our driving needs carefully, Jay and I decided that we really had to get a fuel efficient car. Truly, we couldn't afford NOT to. We were spending upwards of $700 per month on gas given how often we go to Los Angeles now, and the fact that we have one car that gets 18 miles per gallon and another just 10. Moreover, since Jay has our Toyota van parked at the airport not infrequently, I am driving around in the huge gas guzzler with only one or two children during the day--rarely do I have all the children with me at once and need the giant van.

We tracked how many miles we were driving and calculated how much we would save in gas by adding a 40mpg car to our garage. We realized a new car would pay for itself while giving us the security of having a more reliable car to take to Los Angeles (the Toyota van is rapidly approaching 200k miles and is starting to require frequent repairs). Plus, if we drive our big church van less, it will last longer...hopefully until we don't need it anymore. Seemed like a no-brainer to us!

After researching all the available options (we seriously considered four cars in all), we settled on the Honda Insight Hybrid. After driving it nearly 1300 miles (in just 12 days--I TOLD you we drive a lot!) we couldn't love it more. We have averaged 47 miles per gallon and everything we read tells us that the mileage improves over time as we get more used to driving efficiently and the car gets broken in. This beats the numbers in our spreadsheet, so it was even more definitely a good decision. It was quite inexpensive for a new car...and Honda is having its 2010 clearance right now so they are offering all kinds of favorable deals.

Our favorite part about the Insight is the feedback it gives the driver. It actually helps you to drive it more efficiently. In some ways, it's like a giant video game. You earn "leaves" on your screen for driving efficiently and you lose them when you accelerate or brake too fast. It's all about slow and steady wins the race. When you drive efficiently for a certain amount of time you can earn trophies and more layers of leaves on your "tree". It's pathetically fun. Plus, you can watch your real time average of mpg and it catalogs your last three trips along with your current one, so you can see how you're doing over time (or criticize your spouse for their less than optimal fuel efficiency, if that's what you prefer to do with the information).

At any rate, we love our new addition and highly recommend the Honda Insight to anyone who might be in the market for a more fuel efficient car. But hurry...the 2010 clearance is ending soon (oh, and get the internet price...it's quite a bit less than the sticker!).

Take Five

The venerable Cardinal Newman will be beatified by Pope Benedict later this month. If you are interested in learning a little more about him and his writing in the wake of this event, I recommend this approachable book, co written by Mike Aquilina and Father Juan Velez: Take Five: Meditations with John Henry Newman.

If, like me, you like to do a little spiritual reading each day but find it difficult to fit it in, this book is a perfect read. It is designed to be consumed in five minute chunks and takes the extensive works of this great author and boils them down to their most relevant points. It also puts the work in the context of his life, which helps to understand where he is coming from.

If you are interested in learning a little more about Cardinal Newman, especially since we will be seeing a lot about him in the news over the next few weeks, this is a good source.

Happy reading!

Now That's A Friend

This morning was "picture day" for my football players and cheerleaders. They had to be at the field in full uniform by 7am. No, that was not a typo. 7am.

Football players? No problem. Roll out of bed, no fuss, no muss. Cheerleaders are an entirely different story. They require hairdos that match their team. They must have the correct (out of three, mind you) hair bow. They go out with curls. They need hair product.

I am terrible with girl hair. TERRIBLE. This is not a good thing for a mother of 4 girls. When I got the requirements for the girls' hair a few days ago, I panicked. Lindsey had to have her bangs french braided into a high, curled ponytail. Julia's was a little easier, just a high curly pony, but still quite a challenge for someone like me. I was stressing to my neighbor about this and, in typical Robin fashion, she set about solving it for me.

She found our good friend Julie, who has been doing cheer hair for years, and before I knew it Julie and her daughter Alyssia (our long-time babysitter) arrived at our house at 6am this morning armed with curlers and mousse. The result was great hair, unified teams for both girls and a really relived mom (me!). Not to mention how happy my girls were that their hair actually got done correctly!

If I was unsure, before this morning, as to whether or not I had good friends (which, happily, I wasn't), I DEFINITELY know it now. Thanks, ladies.

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.