Four out of Four Doctors Agree

It's biopsy time again. Luckily, it is soon (Friday) and I will have results early next week, so I don't have long to wait.

I actually had a very nice day at UCLA today in the care of the folks at the Revlon Breast Cancer center and the Iris Cantor Breast Imaging Center which, surprisingly, I had never been to before today. I have a ton of confidence in my surgeon and find her very presence reassuring. Her wonderful staff got me upstairs for initial imaging within a half hour (I am used to waiting weeks in between referrals and procedures).

I had a similarly great experience with the fellow who performed my ultrasound. She was exceptionally thorough, knew my history completely, and eventually corroborated her findings with the radiologist who read the MRI that began all of this last month. They decided together what to do while I waited. (Incidentally, for you Kaiser patients, she told me that she would be heading to the Kaiser system as soon as her fellowship was over, so you will soon be getting a great new radiologist!)

Not once today did I feel like a Stage IV patient. I felt like any other young(ish) woman who might find a suspicious lump in her breast that could be successfully treated. Everyone I came in contact with today was interested in being aggressive with this latest finding and assumed that it could be completely eradicated, regardless of my prior history. I LOVED that. They even took new baseline mammogram, which I was not scheduled for, so they would know the character of anything new that came up over time. I truly appreciated that long-term view.

I am in the very unusual position of not really caring all that much whether these lumps are benign or malignant. I know that sounds crazy, but if they are malignant, they are so early that they can be treated easily. Of course, I'd rather not have the lumpectomy and radiation that are sure to follow a malignant diagnosis, but in the grand scheme of things I'm certainly not afraid of the diagnosis, as I was the first time. It won't significantly change my life--that has already happened.

I read a beautiful account of this profound change in a book I'm reading called The Emperor of All Maladies by Siddhartha Mukherjee. I hope you will indulge me as I quote it here, as it so perfectly captures the unwelcome portion of a patient's transformation during treatment for cancer:

The Italian memoirist Primo Levi, who survived a concentration camp and then navigated his way through a blasted Germany to his native Turin, often remarked that among the most fatal qualities of the camp was its ability to erase the idea of a life outside and beyond itself. A person's past and his present were annihilated as a matter of course--to be in the camps was to abnegate history, identity and personality--but it was the erasure of the future that was the most chilling. With that annihilation, Levi wrote, came a moral and spiritual death that perpetuated the status quo of imprisonment. If no life existed beyond the camp, then the distorted logic by which the camp operated became life as usual.

Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away. Every last morsel of energy is spent tending the disease. "How to overcome him became my obession," the journalist Max Lerner wrote of the lymphona in his spleen. "If it was to be a combat then I had to engage it with everything I had--knowledge and guile, ways covert as well as overt."

This passage could not be more true. I wish I was not so focused on my own health, but no matter how hard I try to drag myself away from it, I cannot escape. Thanks to my family and friends, I do think of other things(like who has what practice after school and who has to remember to bring a share to school this week) but some days it is nearly impossible for me to not dwell on this battle I am constantly engaged in. It is often draining, but I am glad to know I am not unusual in this and that, indeed, it is par for the course if I am truly going to put up a decent fight.

Anyone who has read this blog for long knows that I often speak about the positive things that this cancer diagnosis has brought, for there certainly are many. I honestly believe that I am a better person for it, overall, and don't wish the entire experience away (though it could happily end anytime now). But that doesn't mean that it isn't difficult at times.

Like, say, during a biopsy week. Wish me luck!

Thank Goodness for Children

At this morning's mass, during the Eucharistic prayer, Bella is barely enduring it all, when suddenly, she perks up, whips her head around to me and asks with wonder, "Mama, did the priest just say Smurfs?!"

It was heartbreaking to have to tell her no, but so delightful to have been asked. Can I live in her world for awhile?

At Least I Got 24 Hours

Of peace, that is. To enjoy the clean scan results, and the prospect of nine weeks without drama. However, I am getting the clear message that long-term peace is not to be mine, at least not yet.

I saw my oncologist yesterday, ready to rejoice with him in my stunning scan results. Instead, he expressed concern--to my complete surprise--about the developments in the right breast. Apparently, he did not like what was seen on PET combined with MRI, even though I thought it was fine (I guess I should have gone to medical school!). So, he is sending me off to the surgeon for a biopsy.

This is not something I would have chosen. In fact, when he asked me if I wanted a biopsy, I actually snorted and laughed as I shouted, "NO!". But apparently this was a rhetorical question. Though I would have preferred to ride it out the nine weeks and see, he was pretty insistent that I have this done, so I will do it.

But it's not all bad...he let me know that it was because he doesn't think I'm going to die of the original cancer any time soon that he is choosing to be aggressive with this, and that is nice. Too many Stage IV patients are essentially written off by their doctors and not treated because they see no point. In contrast, I was told yesterday I was "salvagable" (who knew I could ever be so happy to be described by that particular word?) and therefore deserved the full work up. Doesn't mean it's malignant.

But it does mean I'm going for another whirl on the roller coaster when I really, really wanted to get off. Hang on, here we gooooooooooo! (I hope I don't throw up.)

Doing the Happy Dance

Scans came in today, and they are completely clear of progressing cancer!

The new spots in the right breast are seen but not metabolic, which indicates they are benign. The T9 vertebrae is healed as a result of the stereotactic radiation (which I am thrilled about but did not expect since it still hurts quite a bit). The rib lesion is still mildly active but much reduced in intensity from the last scan 5 weeks ago.

My liver is clear. Totally clear of anything abnormal at all. This is the most calming news of all, as the strange abdominal pressure and appetite changes I have been experiencing continue. But since two scans now have shown nothing unusual, I am ready to peacefully accept these symptoms are due to something else and are nothing to worry about. I really needed that peace of mind and am grateful to my doctor for ordering this extra scan for me so I could receive this great gift.

What a roller coaster of stress and emotion and worry this has all been these past few months. I am so, so happy for this reprieve and fully intend to enjoy these nine weeks until my next regularly scheduled scans (when I am sure to begin to worry all over again...because I am all too human).

Thanks for all your support and prayers during these past few months as I have dealt with my first real bump in the road since initial diagnosis. I am sure it will not be the last, but in the meantime I am going to appreciate every moment of this period of, as the radiologist so beautifully reported it, "decreasing disease".

Can Someone Explain How This Happened?

I woke up on Friday morning, May 20, to find a teenager in the bed my little boy used to sleep in.

This man-child is huge, with feet the size of scuba flippers, and--gulp--hairy legs! He is taller than me, and nearly as tall as his father. He has a smile the size of Texas with a heart even bigger than that. He is lean and muscular, hysterically funny and witty as all get out. He makes me laugh every day and continually delights me with his character, which I could not be prouder of.

I am so happy that this newly minted teenager still likes to hang out with me and his dad. He talks to us about all sorts of things and delights in telling us stories and dumb jokes. He wants us to see the things he thinks are funny and tell us about things that concern him. I hope and pray that he does not change in this regard.

He is a wonderful--though requisitely obnoxious and torturous--big brother to his six younger siblings, and sets a good example in honesty and integrity. He has chosen quality friends and is loyal and objective.

I can't believe that my little boy is officially a teenager. How did this happen? I blinked and he grew up. Now comes the fun part!

And Now for Some Good News

Yesterday we had Joey's tri-annual IEP review. Every three years the school evaluates the resource children to see how they are doing. They talk to all their teachers, test them to see if they need more or less services, and then make a recommendation to the parents.

Joey's review could not have been more positive. His teachers unilaterally called him hard working, intelligent and kind. All have seen progress this year in his physical writing skills (except spelling which remains atrocious). He is making As and Bs with no resource help whatsoever, so he has been moved to a "monitor" status, which means he is out of resource advisory and will check in with the resource teacher now only periodically or if he needs something.

We are so proud. Just a few years ago we were consumed with worry about our child who was not progressing in school. We would have done anything, paid anything, ransomed anything to hear the news we got yesterday. As a complete bonus, he has turned out to be quite the track star, solidly winning three sprints at his last meet. All this has combined to give him the confidence he was lacking for so long. We are literally watching him blossom and realize the potential we always knew he had.

Happy, happy, happy.

The Totally Backwards MRI

Well, the long-awaited MRI results came in today. They were...interesting.

As you may recall from my last post, I have a large mass that has recently developed in my left breast in same location as the original cancer. Even though it did not show up on my recent PET/CT, I was insistent that something was wrong, hence the MRI which is clearer imaging for the breast.

When the MRI was done, I showed the tech the mass and asked afterward that she check to be sure she saw it. She did see it and was able to show me on the screen the area that corresponded the the mass we could see and feel. I left happy in the knowledge that it had indeed been captured and would be properly analyzed.

So, the good news is that the mass is nothing to worry about (and I now believe this since two different imaging systems agree). The radiologist referred to it as likely post surgical changes (interesting, since I never had surgery) but classified it on the BI-RAD scale (1 being nothing seen at all and 5 being without a doubt malignant) as a Category 2, benign. I am now officially ready to put this to rest.

However.

There are two new suspicious lumps in the right breast. I cannot feel them, and they are still quite small, about 6 mm each. These fall on the BI-RAD scale at category 4B, which means "suspicious abnormality, biopsy recommended". I immediately got out my MRI from my original diagnosis and was a bit dismayed to learn that my original cancer was classified as a Category 4C.

Why am I concerned, you may ask, since I already know I have cancer and it has already spread through my body? Because breast cancer, as far as I understand, does not spread to the other breast. It spreads out of the breast into bones, lungs, liver and brain, but does not infiltrate the healthy breast. Therefore, if these lumps are indeed malignant, they will indicate a new primary cancer.

It would be strange for me to have a second primary since I didn't have any risk factors for the first one, but I have been on a trial drug for quite some time and have received more radiation than the average person, so who knows? I suppose anything is possible. A new primary could have the same biology or completely different biology as the first one. Sometimes, even different lumps in the same breast have different pathologies. That means, if these new lumps are malignant and are not HER2 positive, they would not respond at all to the drug I am currently on. However, since these are still so small, I suspect they can likely be easily dealt with through a lumpectomy. But what do I know.

I am going to wait until I see the NP on Thursday before I get too excited about all of this, but it is definitely a setback for me mentally. There is a decent chance it may not be malignant at all. My doctor may not even recommend a biopsy at this point, preferring to wait for the next PET (in fact, I am guessing that will be his strategy). But at the end of the day, it is another thing to worry about, more tests on the horizon, more waiting and more anxiety. I would be lying if I said this was all easy to take.

Nonetheless, I am choosing to focus for now on the fact that the big mass seems to be nothing to worry about. Let's take our victories where we find them, shall we?

Now, I believe I have some children to tend to!

A Very Belated Health Update

My apologies for being silent for so long...while there has been no shortage of things going on over here, I have experienced a blog-deadly combination of intense fatigue and intermittent internet problems. But I am here and all is well!

For those of you who want a detailed update on my condition, read on. For those who don't, you can stop right here secure in the knowledge that I am still alive and kicking, and happily so.

I completed two weeks of daily radiation to my rib last week, as well as a single high-dose zap to my spine. I stayed with a friend in Glendale during my treatment so I wouldn't have to drive back and forth, and that was a nice break for me. I took the two little girls with me as I could not bear to leave them. This made for a heavier load on my friend who watched them while I was treated, but eased my conscience greatly about leaving my family unattended for so long. I am truly grateful for her help and for nurturing my spirit as well as my body while I was in her care.

The daily radiation, while certainly inconvenient, was really not that bad. Each appointment only took about 15 minutes and didn't hurt at all. I have a little skin discoloration where the beam passed through my skin but it doesn't bother me. The same cannot be said of the stereotactic dose to my spine. That single shot of radiation sent me into a spiral for no fewer than three days and caused me discomfort in my kidneys and on my abdominal skin. This, happily, passed in a few days and all is now well.

With some notable exceptions.

The pain in my spine and rib, which by all accounts should be gone now, has not abated. In addition, a large and very suspicious mass has developed in my breast exactly where the original cancer was, and I have a strange tenderness in my abdomen. When I showed these things to my doctor, he immediately ordered scans. We all expected them to come back showing that the cancer had continued its march in my breast and liver, and my doctor assured me that I should not worry if that was the case, that there were many tricks left in his arsenal. Needless to say, this time of waiting and wondering was very stressful.

The scans came back last week showing nothing. Absolutely nothing. Instead of being happy about this, as any normal person would be, I was incredulous. I went back to my doctor and asked that the NP do another physical exam to assure me that I am not imagining the mass in my breast. She concurred with my findings completely and could not understand why it didn't show up in the PET/CT. She ordered an MRI to see if we can get some more information on what is going on. That will be on Tuesday of this week.

So, the waiting and wondering has not ceased for me, even after all these weeks, but I am more peaceful with the state of things. As far as I can tell, there has never been a large active cancer that has not shown up on a PET, since cancer is by definition metabolic and the PET measures metabolic activity. Therefore, I have concluded that it has to be something else and I am wasting these precious nine weeks of happy scan results with needless worry. I tell you, the emotional roller coaster of cancer has been, for me, far worse than the physical insult. It is very difficult at times to get my head around living and dying, living and dying, and preparing for both simultaneously. But I am still a basically happy and peaceful person. That's the faith and prayers part!

One more minor thing to mention, if I'm coming clean. For the past nine weeks I have been receiving iron infusions to bolster my sagging hemoglobin. This has done wonders for my energy level and I have begun to feel more like a human being as my numbers have crept up. I am still below normal in my iron saturation, about half of what I should be, but double from where I was, so it is definitely working.

Just after my iron infusion on Thursday I nearly passed out. I had an intense bout of nausea and dizziness that almost flattened me. I alarmed the nurses, who called for my doctor (who was there in a flash and very reassuring) and kept me for awhile, giving me Benadryl and waiting while my blood pressure returned to normal. I have no explanation for this, and my doctor has called it a bad reaction to the iron, which happens occasionally, but rarely after so many infusions. Needless to say, he has discontinued the iron so I hope that my blood can find its own way from here on out. Just another piece of the puzzle. Truly, the entire episode was nothing short of humiliating for me, as I do not relish losing control over myself for even a moment. Especially in an infusion room filled with other patients.

So, there you have it. The up-to-the-minute update on my ever dramatic health situation. I am very fortunate to have children to distract me from all of this, because otherwise I might be in danger of becoming totally self-absorbed in my own health. But as it is, each day remains relatively normal for me, as I am pulled along with the tide of my family life. Thanks be to God.

Congratulations, Julia!

Julia made her First Holy Communion yesterday. She was a vision in her dress, and the day was a joy for us all. For the first time, we made it through a first communion mass without having to evacuate small children to the crying room, so I'd say it was an unqualified success!

As this day fell on the weekend between two weeks of daily radiation treatment that have me spending more time with doctors than with my family, I was simply grateful that we were all together.

Julia, may you never stray from the Holy Eucharist, which will always be your source of grace and strength. Congratulations!

It Was...Interesting

Jay does not insist that I do much for him; as far as husbands are concerned, he is pretty low maintenance. He likes his food to be hot, and that is really about it as far as his "must have" list. (Yes, I know I am blessed in this, and of course it makes me want to do all sorts of things to make him happy since he is so easy to please!)

So, imagine my surprise last week when I received an email from the producer of X-Factor (Simon Cowell's American Idol-like singing competition) confirming my audition in Los Angeles for Sunday. I thought it must be a mistake, because I would never, EVER sign up to audition for that show or any other reality circus that would require me to be on television, subject myself to riddicule and, most importantly, keep me away from my family who I leave often enough for medical reasons.

Then I scrolled down and read the entire thread. Apparently, Jay received a general notice of auditions some time back and took it upon himself to contact the producers to let them know that his wife has "a beautiful voice" but that, due to her cancer treatments, she could not stand to wait in the kind of lines required to obtain an audition. The producer then wrote back to Jay assuring him that he could get me a special, confirmed audition due to my condition that would minimize my wait time substantially and allow me to sit most of the time. Once this was in place, Jay decided to let me know that I would be auditioning, in three days' time.

After I scraped my jaw off the floor, I immediately launched into the million reasons I had no desire to do this. For one, I may sing fine in church, but I am no American Idol (nor do I wish to be). I don't perform or dance when I sing--I pray! When I don't pray a song, I don't sing it particularly well. Jay agreed that I sing best when praying and rather than excusing me from this farce he instead went to work assisting me in selecting songs that would allow me to show the judges who I am--a Christian genre singer.

Knowing that a Christian singer of any caliber would most likely not have the "X Factor" they are looking to share with a very secular, often musically offensive public, I refused to do it. I could see no point: I didn't want to audition, I didn't want to compete, I didn't want to be rejected, and I didn't even want to win a recording contract to be a pop star--not that I could have ever seen it going that way. Nonetheless, what else could this be but a complete waste of time?

But Jay looked at me, smiled sweetly, and said, "Please? I really want you to give this a try. For me."

What could I do?! Nothing, I tell you. I was doomed.

So, off we went on Sunday to the LA Sports Arena where I joined 15,000 hopefuls being herded and sorted like cattle. I tried to be cheerful and not grumble, because if I was going to do it to please him what would be the point in being grumpy about it? But I did let him know--sweetly, of course--that he owed me big time and that he had better not leave me alone for even a minute!

And you know what? I'm glad I went. It was really an experience like no other. I saw every type of human, and, sadly, what many of them would do to get on camera. I don't understand that desire at all, so I watched in a completely detached way the antics, outfits, and plotting that went on around me. I was partly amused but mostly horrified at what reality television has done to our society. I asked Jay, as we watched the scene around us with our jaws half open, if he thought God might be regretting his promise to never send another flood. Because, looking around at what the human race has become, it seemed like it might be a good time for another one.

Thankfully, there were a handful of normal, actually talented people there too. I got to talk to some of them who just wanted a platform to launch a legitimate singing career. This was in stark contrast to the man dressed like Michael Jackson and the girl group wearing blue wigs and satin pants.

Needless to say, I got to say "I told you so" to Jay when the judge told me, immediately with his body language and soon thereafter with his words, that I am most definitely not what they are looking for. Hmmm, who could have predicted that? Oh, that's right, I could have!

The best part of the experience for me was seeing how truly disappointed Jay was that they didn't see in me what he sees. That confidence and support of me was worth the entire day, so how could I regret it?

So what if I don't have America's X Factor? I have Jay's, and that is all I need!

It's Good to Know Your Lines

Sam's 4th grade teacher recently had a talk with the kids about personal hygiene. Apparently a warm up in the weather caused some unpleasant odors in the classroom, so they gently learned--many of them for the first time--about the wonders of deodorant.

Sam came home in a fever to get some Old Spice deodorant of his very own. At first I thought, "Old Spice?! Really?" I remembered Old Spice in our bathroom when I was very small and so I associated it with older dads and grandfathers. In fact, I remember that our Old Spice product had an old-fashioned brush for shaving with it. So, I hardly think of it as modern, and I certainly don't think of it as something a nine year old would aspire to.

Then I remembered the Old Spice Guy, that handsome gentleman who has been ceaselessly promoting Old Spice on TV. As someone who's career was in marketing before becoming a mom, I can most definitely appreciate the concept of brand repositioning, and Old Spice has certainly done that. They are now appealing to women, who do most of the decision making at the grocery store, and are advising them to ensure that their man smells like one. So, it was with admiration for the marketing team at Old Spice that I was pleased to ensure that Sam got his own deodorant.

The next morning, Sam came downstairs, lifted his arm proudly and said, "Mom, how do I smell?"

Luckily, I knew my line: "Like a MAN!"

Yep, that was the correct response. I don't think he stopped smiling for an hour.

What's Ahead

If you are interested in knowing what is ahead for me as I enter the world of radiation treatment, take a few minutes and watch this excellent summary put together by the UCLA Radiation Oncology department. Not only does it explain in detail what I can expect and how radiation works, but it features my own doctor (Dr. Selch) and the very same office and treatment rooms I will be seen in.

My spine will be treated with high-dose stereotactic radiation therapy, while my rib will receive the more traditional multi-dose beam over a period of somewhere around two weeks. I should get started in a week or so, after my insurance processes all of this.

So, here is everything you ever wanted to know about cancer radiation therapy. May you never need it yourself, but rest assured that, like almost everything in life, the concept is far scarier than the reality. I can definitely do this!

Boys are NOT Girls

Yesterday I heard some alarming noises coming from the trampoline area so I bolted out of the kitchen to see who was hurt. As I rounded the corner I saw Sam and his friend rolling around in the middle of a circle of other children (some mine, some visiting).

At first I was confused--I couldn't tell which one was hurt. Then, it occurred to me that they were fighting. This was very difficult to process, as these two are good friends who spend a lot of time together and I could not imagine them in a physical fight.

I finally cried out to the crowd in a desperate attempt to see what was going on, and they all looked at me like I was from Mars. "Mom," Lindsey said, as if I were the least intelligent person she had ever encountered, "they're playing tap out wrestling."

Duh.

No, wait. What's that?!

I watched in horror for a few moments as they rolled over eachother and jabbed at one another, fairly evening matched from what I could tell. I finally couldn't take it any more and said, "This can't possibly be fun for you, can it?!"

The wrestling came to an abrupt halt. Sam grinned at me, blood oozing from a (small) cut on his lip, and said enthusiastically, "YES!" His friend agreed with equal enthusiasm, just before he lunged at Sam anew.

I looked pleadingly at the girls in the crowd and said, "Have any of you girls ever felt the need to do this?" Again, they looked at me like I was dumb as a fence post. "No!" they chorused. Of course not. But it didn't stop them from enjoying the show, I noted.

Boys will be boys, I guess, but this girl will never, ever understand them.

Spring is in the Air

It may still be Winter officially, but at our house we ushered in Spring today. Amidst the blossoming trees and warm beams of sunshine could be heard the delighted shouts of my children as they opened the pool for the first time since Fall.

You couldn't pay me enough to get in that unheated water (although I could be convinced to join them in the 99 degree thawing tub). However, seeing my children truly worn out from several hours of hard core swimming? I would pay plenty for that.

I've missed you, sun! Welcome back.

My Annual Torment

Why, oh why, do the Girls Scouts time their cookie season to match Lent?

Every year I look longingly at boxes of Samoas and ponder the question of whether this is a cruel joke or a complete coincidence. I currently have two girl scouts who badger me to order cookies in January, when it seems like a really good idea. However, when the order arrives during Lent I wonder what I was thinking. For weeks these boxes sit on the pantry shelves while I shoot loving glances their way, counting the days until they can be mine.

Today, as an added bonus, I got to spend three hours with Julia outside of Lowes staffing her troop's cookie booth. We sold dozens of boxes to happy people while I imagined them, somewhat resentfully, ripping the boxes open the minute they got back to their cars (which is exactly what I would do if I were them, no doubt!). Julia, like me, gave up cookies for Lent, so she abstained along with me while the other girls of her troop liberally sampled their products. I was proud of her, especially her cheerful disposition about the whole thing.

It helps that we always exclude Sundays from our Lenten promises. They are, after all, feast days in and of themselves, so we treat them as such. We were both imagining tomorrow when we would be consuming the box of Samoas we tucked away for the occasion.

It also helps that Easter is late this year so we had a little time to enjoy a few cookies before Ash Wednesday happened upon us.

Still I want to know. Why cookies at this time of the year? There are 11 other months that would work just fine. I'm just saying.

Doesn't This Just Say It All?

At the moment, I have many friends in need of encouragement. From marital issues to health problems, from unemployment to children with disabilites, everyone, it seems, has their crosses to bear. My prayer list is getting longer and longer, and my heart simply aches for each person on it. Please know, dear friends, that I am with you through it all, and that all of this will pass in time. In the meantime, please consider this beautiful quote that has inspired me.

"For a son of God, each day should be an opportunity for renewal, knowing for sure that with the help of grace he will reach the end of the road, which is Love.

That is why if you begin and begin again, you are doing well. If you have a will to win, if you struggle, then with God's help, you will conquer! There will be no difficulty you cannot overcome!"

-St. Josemaria Escriva

One day at a time, my friends. One day at a time.

One Less Thing to Cry Over

I'm speaking of spilled milk, of course.

I came home a few nights ago to a pile of wet kitchen towels on the floor of the laundry room. (Incidentally, this is exactly where I ask the children to place things that need washing, as I find their sorting skills somewhat lacking in precision.) I didn't think much of this, and carried on with serving dinner and helping with homework.

In the context of a completely unrelated conversation, it came out that Bella had "helped" earlier that evening by bringing in a gallon of milk from the garage, and that she had accidentally dropped it by the hall closet. Naturally, the plastic split and an entire gallon of milk spread itself across the tile.

As I questioned the children about this, completely stunned that there was virtually no evidence of this having happened (other than the wet towels), I learned that Sam, hearing the spill from upstairs, dashed down and set to work cleaning it up without hesitation. No grown up asked him to do it. He had nothing to do with the mess. He just fixed it, and did a great job doing so. If I hadn't seen the towels, I wouldn't have ever known it had happened. That is a real first for me.

Sam definitely earned "kid of the week" in this family. May this helpful trend be contagious and oft repeated!

Just A Bump In The Road

Scan results are in...

The good news:

1. My liver is still completely clear.
2. My doctor continues to be delighted with my response to treatment.
3. I continue on the clinical trial of T-DM1.

The less good news:

1. I have some new, active skeletal metastases in my rib and thoracic vertebrae.
2. They hurt.

The good news in response to the less good news:

1. I will receive radiation on these spots to relieve the pain and hopefully zap this cancer into total oblivion.
2. The clinical trial I am on does not consider progression of cancer in the bones as "worsening of disease". In other words, I get to keep receiving this drug that has done so well for me for so long.
3. I have been advised that activity in the bone does not pose a threat to other organs. Apparently, bones behave differently than tissue.
4. My doctor is not even slightly alarmed by this turn of events and still believes I am doing amazingly well.

In other news, I have begun to receive a weekly iron infusion to combat a hemoglobin deficiency that has caused me great fatigue of late. I am thrilled that the problem has been identified and that we can now address it, as my energy levels have been sub-human the last few weeks (and don't the kids know it--they smell weakness a mile away!)

Although it is difficult to not become alarmed by progression of any kind, my entire medical team has assured me that this is really not, in and of itself, a big deal and is really par for the course with a Stage IV diagnosis. While we all, of course, had hoped that we had beaten things back completely and permenantly with our first strike, the reality is that I am living with a chronic disease. It will rear its ugly head occasionally and we will just have to beat it back into submission each time it shows up with whatever tools we have in our arsenal. And there are plenty of things in that arsenal.

We will tackle this bump in the road head on with every expectation of success and the ever-present knowledge that God is ultimately in charge of it all.

So, let's bring on the radiation, continue with the drug that is keeping my liver healthy, and, above all, keep the faith!

Not Your Usual Breakfast Comment

Today I had a PET/CT scan. As usual, this required that I fast beforehand and follow some other general guidelines (such as no exercise for 24 hours--now THAT one is hard to take, I tell you). These scans also require that I keep a roughly 10 foot space between the kids and myself after the scan for the remainder of the day in case I am shedding radation. As you might imagine, this is difficult for the little ones to understand, and I am so grateful for the older children, husband and grandmas who are quick to hold, help, change or read to smaller siblings in order to distract them from this ordinance.

At any rate, I have now done nuclear tests so often that my kids can recognize the difference in my morning routine on a scan day. Particularly observant this morning, Julia said, "Oh, do you have a scan today?" I confirmed that I did. (I'm sure her ability to recognize this had NOTHING AT ALL to do with fact that I might possibly have been a bit edgy without my morning coffee).

"Will you be radioactive?" she asked next. I confirmed that I would be.

Tony, listening to this from the other side of the breakfast counter, promptly wailed, "Aaaawwwww, I HATE it when you're radioactive!"

Not your typical breakfast conversation to be sure, but a very real part of our crazy reality.

Scan results will be ready Thursday, and I will make every attempt to post them that same day. Thanks for waiting along with me!

Locks of Love

I have not been able to cut my hair since my diagnosis. At first it was purely psychological--I was supposed to lose my hair and, indeed, was prepared to do so. When I found out I was spared that particular side effect thanks to my study drug, I clung to my tresses with all my might.

After a few months of observing the women in the infusion room who were not as fortunate as I in their follicle response to chemo, I began to realize that I was growing it for a purpose. Locks of Love is an organization that makes real human hair wigs for children who have lost their hair due to cancer treatment or other health disorders causing hair loss. My hair met their specifications for donation, provided I could give them 10 inches. Now, that's a lot of hair. Nonetheless, I was determined to give back what should not have been mine and so the growing began.

Last week I made the cut and sent the envelope off with much joy and a beautifully complete sense of purpose. I have had the chance to return a gift that was given me and I couldn't be happier about it. Plus, I love my new haircut!

Here's what 10 inches of hair looks like...

What Does This Say About Our Family?

Tonight was open house at Sacred Heart School. We were visiting Lindsey's classroom when Sam caught sight of her "Life Goals" poster on the wall. We stopped to read it together.

There were about 10 things on the list, roughly half having to do with places Lindsey would like to visit. I was reading off this list--Visit New York, Visit Paris, Visit China, etc.--when I came to number seven: "See Big Ben".

Sam paused for a minute and then said, "Big Ben Roethlisberger?" clearly impressed that his non-football-fan sister would have this on a short list of her life goals.

After explaining to Sam that she meant the clocktower in London and subsequently witnessing his total disappointment in this, it occurred to me that we just might want to spend a little more time on world culture and a little less time on football stats.

Or not. 'Cause really, which will be more useful in everyday life? Seriously!

A Sad Day Indeed

One of the things I have been enjoying about Natalie recently is how she looks at me, raises up her arms and says, "Hold you!" I have asked her so many times, "Can I hold you?" that she now has her pronouns for this sentence totally mixed up.

This morning she waited for me at the top of the stairs, raised her arms and said, "Hold me!" I did a double take and said, "Hold ME?!" She repeated clearly, "Hold me!"

Awww. I HATE when they grow out of my favorite mispronunciations.

At least Bella still says "besince" instead of "because". I'll enjoy it while it lasts.

Isn't it Obvious?

Jay called me over this morning, as he often does, to ask that I take a moment out of my busy day to appreciate the dog. This is the scene that inspired his affection:

Unmoved, I said, "You know, I could do that. Lay around all day and bask in my own odor, contributing nothing to the house. Would I get the same admiration?"

Jay, looked totally shocked, exclaimed, "But he IS contributing something to the household!"

"Oh really?" I asked skeptically. "What's that?"

"Aesthetics!" he confidently replied.

Of course. Don't know how I could have missed it.

Clarification, Please

It's family prayer time...the part where we all go around and state our specific intentions.

Tony says: "And I pray for mommy's cancer...."

There is silence, as the kids process this. Then come some smiles and suppressed giggles.

Tony is looking proud of himself for remembering me in his intentions.

Finally, Jay says: "You mean, that the cancer does BADLY, right? You're not rooting for the cancer, are you?"

Tony, burying his head under the covers, just nods. Everyone is relieved.

Natalie

Poor Natalie. As the seventh child, she is most definitely not as well-documented as her older siblings.

As I delighted in her antics this morning, I decided to dedicate a post just to her, so we could take note of some of the things I am not writing in her baby book. (Since I haven't made one for her. YET, of course. I plan to get right on that.)

Because she is preceded by a sister with such a strong personality (I speak, of course, of Bella), I tend to think of Natalie as having a mild-mannered temperament. However, she is quite her own person with plenty of spunk of her own. She definitely has her opinions and makes them known.

Natalie, more than any of my other children, is influenced by her siblings. Now that Joey and Lindsey are old enough to help care for her, she spends a decent amount of time being carted around, bathed, changed or fed by her older siblings. Even Sam and Julia help her out a lot, and she knows to go to any of the older four children for the things she needs. If she wants milk, she asks whoever she finds first. It is really the first time one of my children looks to their older siblings as often or more often than to me. This is not a bad or a good thing, it just is what it is. I appreciate the help and she loves the attention.

As you might imagine, spending so much time with older brothers and sisters brings its own dimension to her personality. For instance, as we were sitting in church a few Sundays ago, waiting for mass to begin, Natalie stood up, wiggled her little rear and enthusiastically shouted, "Conga, conga, conGA!". I didn't have to ask where she learned that, as her older siblings nearly fell under the pew trying to control their laughter.

Similarly, last month she delighted me with her statement, "I Santa. Ho Ho Ho!" It was followed shortly by the clicking sound the reindeer make on the roof as she chanted, "Reindeer, reindeer, reindeer." I was convinced she was the smartest two year old on the planet until I realized that she had been carefully coached. Although I am still convinced of her obvious intelligence, I now understand that Julia invested a decent amount of time imparting this critical knowledge to her.

Less delightful is her penchant for coloring. On the walls, on the couch, on herself. I took her to the doctor yesterday for a vaccination and was completely embarrassed when I removed her clothes and found not one but two marker colors broadly decorating her torso and legs.

Jay and I joke that as far as candy is concerned, Natalie is like one of those pigs who can sniff out truffles in the forest. If she is silent for more than two minutes (and I am sure there are no markers in the vicinity) I can be sure that she has moved stools, stacked things or otherwise connived to locate any hidden stash of candy anywhere in the house and is helping herself liberally. You can't imagine how many times I've heard an outraged cry of an older sibling who has found their Halloween candy, or birthday treat bag, rooted through and completely looted.

Natalie LOVES Dora. I felt a little guilty about how much of it I let her watch when I heard her count to seven in Spanish yesterday (remember she is just 25 months old). I quickly buried my guilt, however, with the consolation that she will be a leg up when she begins her Spanish classes in high school.

Natalie is going to be quite the ballerina some day (the linebacker body and tree trunk legs notwithstanding). She asks me to sing the "Ballerina" Song (made famous by Miss Kitty) and twirls and twirls until I stop. Her grand finale is usually a seat drop wherever she is, be it on carpet or on tile, which never fails to crack up the rest of the family.

She is definitely her mother's daughter in that she savors her food. Every time she takes a bite of anything she says, "MmmmmMMMM!" and beams at me. She never fails to say, "Thank you!" for anything I give her. She has also learned that a well placed, "Pleeeeeeeease?" goes a long way with us all. She greets me enthusiastically whenever I return to the house (even if I just took something to the trash) and runs to me, hugging my leg. I will miss that someday. She says, "I love you!" all day long, and I never get tired of hearing it.

There are a million more things to say about her amazing little personality and her entertaining activities, but I think this serves its purpose. So, Natalie, please know that although I can not chronicle your life as if you were an only child, you delight me as much as if you were one. I love you!

Humble Acknowlegement

My last scans came in clear. Again.

This means that every scan since last April has been free from active cancer. My breast shows no evidence that there was ever a tumor in it. My liver has no lesions. My bones, though scarred, show no significant uptake on PET scan. I have one little "hot spot" on a single rib that is almost certainly a microfracture over a healed lesion . And that is all.

For some reason, even though I have had good scan after good scan, I have been reluctant to declare myself as the miracle I know that I am. Jay has been anxious for our NED party, but I have not been able to give the all clear for it. Perhaps it is because I have been quite guarded that this good news could end at any time, or maybe it is because I am waiting for the bones to completely heal (which they may never do). Whatever the reason has been, it is time to move forward.

So here is my declaration: I am a walking miracle! God has chosen to heal me, has heard all the prayers and has answered them. Apparently, I have more to do here on earth (no pressure, right?!). I am humbled and so very grateful, especially for my family who needs me.

My oncologist told me at my last visit that I have demonstrated a "complete response" to treatment. In other words, I am in remission as far as Stage IV can be in remission. He very frankly told me that he didn't know what to do with me now, that no one could know, as we sailed off the map long ago on this clinical trial. Should we go off the medicine and hope the cancer does not return or should we keep on with it for a good while? He does not know and neither do I. He has to assume, based on his years of experience, that there are still some cancerous cells in my body that are just too small to see radiologically. Yet, he also says I might be cured. Only God knows.

So, for now, we have decided to continue with the treatments since the side effects are tolerable for me (certainly versus the potential alternative!). This decision was made easier due to the fact that T-DM1 is not yet commercially available and I could not go back to it if I wanted to.

While I cannot technically have a NED party (No Evidence of Disease) since my bones show plenty of evidence, I most certainly can have a CR (Complete Response) party and intend to do so shortly. I think I will wait for one more clean scan, just to be sure, and then, with all of you as witness to this promise, will set a date and start the planning.

And there you have it.

Merry Christmas to ALL

Julia made sure the reindeer were not forgotten, and that Santa was sure to know that these were for his team, not diet food for himself.

We wish you all a very Merry Christmas. May peace and joy permeate your home this day.

Suzanne and Family

P.S. Apologies for not posting the news of Joey's pathology, as many of you have asked. His lymph node tested negative for everything and the doctors have concluded that it just reacted to something and went a little crazy. He is healthy and completely through with all of this. Thanks for your concern and prayers!

Over and Done With (I Hope!)

We are home!

Joey had surgery yesterday to remove the inexplicably swollen lymph node in his neck, and all went very well, thanks be to God. Nonetheless, his surgeon admitted him for observation overnight and as anyone who has ever been in the hospital knows, it is a bit like the roach motel...you can check in, but you can't check out! It took hours and hours to clear him for departure today and we were both literally dancing out of the ward when we were finally released.

Since I've had such a life-saving experience at UCLA we chose to have Joey's surgery there. Once again I was impressed by the care we received, not just medically but from a human standpoint as well. Everyone was so very kind and accommodating, which helps a lot when you are worried about your kid.

The surgery took about two hours and left Joey with a roughly two inch incision mid-neck with a small drain, which was removed right before we left today. He was amazingly stoic throughout the whole thing and didn't even need any pain meds at all today. His doctor ended up removing two lymph nodes rather than just the one since it had become fused to its neighbor due to its significant swelling. She assured me that he still has plenty left and that he won't miss these at all. Since she managed to deftly avoid the two nerves that ran right through the area and maintain all of Joey's facial movement I am feeling quite grateful to her.

Joey's lymph node is now in pathology where it will be dissected and cultured a dozen ways to see if they can figure out exactly what went haywire with it. We should have results in a few days. His blood shows no sign of infection of any kind, so if the pathology is clean this may be the end of this all. I certainly hope that is the case.

Thanks to those of you who have been praying for him and checking in to see how he is. We are truly grateful.

Here is a picture of Joey acting goofy right as they were wheeling him into the OR. The meds hadn't yet put him under but clearly had done their job in relaxing him. You can see the lymph node protruding from the left side (his right). He is not sorry to have that bulge gone.

Here's to great medical insurance...hip hip hooray!

Post Season Report

Perhaps the football team she cheered for didn't win any games this year, but at least its cheerleaders were champions.

Julia and her talented squad brought home the first place trophy at yesterday's cheer competition, and boy did they deserve it! I could not believe how good they were. They are, after all, only seven and eight year olds, but darned if they didn't pull off a complicated, original, perfectly synchronized and virtually flawless performance. As soon as I get the DVD I ordered I might have to put it on youtube for you all to enjoy.

Both my girls kept their routines tightly under wraps in order to surprise me on competition day, and I was so completely delighted by not only Julia's but also by Lindsey's unique and playful performance. Lindsey's team did not place this year (don't get me started on why she should have placed above a team that relied on a raunchy dance to secure its trophies) but that did not diminish the beauty of a job well done for her team as well. I'm very proud of my girls and somewhat surprised (and don't quote me on this) to discover that cheerleading actually IS a real sport. Kind of.

Like my football players, my girls have learned to be part of a team, how to rely on one another, how to win and lose, and that a group is only as strong as its weakest link. Plus, they've learned to yell really, really loudly, and when is that not a skill to be valued in a family of seven children?!

As for the end of the football season, Sam's team lost in second round playoffs and Joey's team lost in the championship game. So, neither brought home the first place trophy, but both had a great season and played for well-coached and classy teams. All in all, a great year.

So, while everyone around here is a little depressed that football is over for the year, I am personally reveling in the fact that for the next six months I don't have to stuff pads, run the practice trolley and keep track of multiple hair bows. I'm entering my off season as well, and I'm pretty happy about that. Whew!

What Bella Brought to the Dentist

Just in case, cuz you never know what you might need.

Happy Cancerversary to Me!

One year ago today I was given the news that would change my life, and that of my family and friends, forever.

Cancer.

Four days later I learned the unimaginable...Stage IV, no possible cure.

On this day one year ago, I could not have imagined the challenges and blessings that this year would bring. I wouldn't have predicted how close to the brink I would come and how resoundingly I would bounce back. I could never have guessed how tightly my family, friends and community would embrace me and how they would keep me from falling. I couldn't have understood that this bleak diagnosis would do so many wonderful things for me.

For here I stand, one year later, a stronger and more peaceful person. Confident in God's love and mercy, sure that whatever path he ultimately chooses for me is the right one. Not afraid of anything life might throw at me now. Grateful for each and every day I have to (hopefully) positively influence the character of my children. Astounded at how completely this disease has backed away from the medication I have been blessed with. Unshakable in my belief in the power of prayer.

No one knows how much time they have left. I am not unique in my situation, unless I consider statistics. But I won't. I have already won the lottery of life in my faith, my marriage, my family and my friends. This gift of unexpected health one year after bracing for an early death is decidedly a great bonus, and I will gladly accept many more to come, if that it what is to be. And you know? I'm feeling more and more optimistic that this will be the case.

Thanks so much for all your prayers and support over the past year. I wouldn't be here without them!

Order Up

We have been busy writing our letters to Santa.

It is my understanding that the elves have less stress in their lives if they have time to respond to specific Christmas requests, so we are getting a leg up and starting early this year.

The way it works around here is that each child asks Santa for three things and can reasonably expect to receive one of those things, at Santa's discretion. So, for the last few days I have been sitting with each child and helping them write their letters.

This afternoon Bella said to me, "I'm going to put my princess bike with the baby carrier on back, my princess scooter and my princess kitchen all next to my bed." I stopped for a minute to process what she had said (it always takes me awhile since her chatter is near-continuous) and then realized that she had listed all three things from her Santa letter, as if they were a done deal.

"Bella," I said, "you know that Santa generally only brings one of the things from your list, right?"

She paused and thought this over for a moment. "No." She finally said with complete confidence. "I ordered all three."

From the Football Field

It's been a great season!

We just returned from Sam's first round playoff game, which his team decisively won. Joey's team had a bye for the first round of playoffs because of their regular season ranking, so that was nice. What this all means is that now both boys advance to round 2 of playoffs. If either or both win next Saturday, they will go on the the Superbowl. We've got our fingers crossed!

Sam, after playing most of the season on defense only, was put on offense today as well with good results. The kid is not afraid of hitting and comes off the line like a heat-seeking missile. It is really fun to watch. He has turned in some nice sacks this season, which always gets me on my feet in the stands.

Joey is now playing tight end and wide receiver on offense, and defensive end and tackle on defense. He has had a really good year in these positions and made his first touchdown--an impressive jump for the pass followed by a 30 or 40 yard run--a few games ago. He has been a solid pass catcher since.

It seems a funny thing to say, but I am so grateful for football and the character that it is helping instill in my boys. When Joey first played two years ago he was a third string player. He could not finish his lap without walking and he begged to quit that first week of conditioning hell. Three years later he is a leader on his team, playing almost every snap, and is someone his team needs to win. A few weeks ago I watched him at practice as he went back, after finishing his run, to help along a teammate who was struggling. Not long ago that struggling kid was Joey, and it is through three years of consistent hard work that he has changed his situation.

From football my boys are learning how to be part of a team, how to be counted on and, best of all, how working hard at something over time can bear great fruit. They are learning how to win, how to lose and how to help lift up another person for the greater good of the team. They are learning how to receive praise when they've earned it and honest criticism when they require it.

If I could have known that first week of football three seasons ago how much I would come to appreciate this sport that, at the time, I thought was going to break my firstborn, I wouldn't have believed it.

Go Rebels!

Finally, I'm Queen!

So what if it's of a hive of bees? A queen is a queen.


In other Halloween news, Edward's got nothing on Tony...

Sam and his friend Darian chased eachother around all night long...


And Bella flashed her winning smile, oblivious to her sister's plight behind her.


Joey was "too old" (his proclamation, not mine) to dress for Halloween this year (sniff, sniff) and elected to stay in to watch the Steelers/Saints game rather than take the neighborhood for all its candy.

How is it that he's too old and I'm not? Perhaps I'd better not think about that too much.

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!