Advice You Will Hopefully Never Need But I Give You Anyway

Should you ever find yourself in the position of having PROMISED to take your 4 year old daughter and six year old son to Disneyland before end of summer, and this promise was made just days before you discovered that your entire life was about to be turned upside down medically, I have some advice for you.

Do it.

No matter how awful you feel. No matter how humbling it might be to be pushed through the park, bald in a wheelchair at age 39. No matter how difficult it was to even get out of bed for five minutes the next day. Because you know what? Tony and Bella have a picture of their mom, scarf and all, coming down Splash Mountain with them that may have cost me an awful lot physically but will pay off in spades in some photo album somewhere until the end of time.

While I'm giving advice on this matter, I cannot fail to caution you in a few areas. If you happen to be going through whole brain radiation at the time (and I certainly hope you will not be!), do not, under any circumstances, no matter how neat your little handicap pass that gets you right to the front of the 90 minute line may seem to be, get on Star Tours in 3D. This is simply too much for the newly radiated brain to take.

Furthermore, do not go anywhere near Toon Town, particularly that blasted Roger Rabbit Spinning Ride thing. It almost killed me.

Stick with things like It's A Small World, once thought by me to be the most boring, repetitive ride in the park. A little brain alteration makes it the most soothing place on the earth, let me tell you. Similarly, Pirates of the Caribbean is just long enough for a nice nap and just dark enough so the kids did not seem to notice, and even a little drool on the shirt passed for some pirate war splash. It was great!

Disneyland is really very good at accommodating guests with special needs and I really appreciated their support in fulfilling this promise to my children. There was little I could think of that I want to do less than go there yesterday and it will take me literally days to recover from it, but aside from the few pitfalls noted above, I am going to give it a two thumbs up recommendation. Especially since no one told me (and I was braced for it all day given my bloated belly) that, sorry, expectant ladies could not ride. I might have gone a tad postal at that but happily did not need to experience it.

Make every minute count with your kids, because there is no way you will ever regret that. It's my advice and I'm sticking with it!

Plugging Along

Just a note to let you know I am still here, taking things one day at a time.

I have been unbelievably blessed to live 18 months as a stage IV cancer patient with very few side effects from treatment, a good response, and maintenance of a normal life as long as I have been able to do this. So many are not as lucky as I have been thus far.

It was inevitable that I would eventually become a real cancer patient, with real effects from treatment, and that is where I am at least for now. As it turns out, when they shoot megawatts of radiation directly into your brain for days on end, things stop behaving perfectly in your body. But as long as those cancer cells are dying, we are good with this.

So for now, I am bald, remarkably bloated, totally fatigued, covered from head to toe with an itchy rash and slightly on this "sloooooow" side (which, is an oddly refreshing break from trying to be on top of things all the time), but am so hopeful that this shall pass into a successfully treated round of brain mets in a few months and that things will improve across the board.

In the meanwhile, what a blessing meals, help with kids, and people keeping me company through all of this has been. It's really, truly, not. that. bad. I can do this! And you are all helping me to do so with great cheer. God bless you all!

More Fun with Cancer

OK, folks, today promises to be a very challenging day for me on a number of levels so I giving you some specifics to share along with me today. Cheer me on, rally me home, 'cuz I know it will go better for me if you are all behind me!

First of all, much of my hair fell out last night. There is still enough there that I will have to do something about it today, either continue sloughing it off or just shave it already, because the sporadic pink (no, I'm not really sure why they are pink, they just have a pinkish tint to them) tufts are beyond disturbing.

You know, when you contemplate the actual losing of your hair, you don't really consider the actual moments of when it is physically dropping off your head. You think of how chic you might look if you happen to have an attractive scalp and how bold you may be in proclaiming bald as beautiful with scarves and shiny oil, but you don't really ever think of how each of those hundreds of thousands of individual hairs are going to come detached from your head and how that prolonged separation might affect you.

Once you notice the tufts dropping, do you help them along? Ignore them in hopes that they'll hang on a few more days? And how to do this while hoping your kids (and worse their teenage friends) don't get scarred for life?

Well, I have no answers, folks, but I will share what worked for me rather peacefully last night. I put on the Sound of Music, darkened the room and de-tuffted into a giant pile while I sang my way happily thorough "My Favorite Things", "Do Rey Me", and "I Am Sixteen Going on Seventeen". By the time we got to the puppet show, about 60% of my hair was in a pile, I looked a little like a crazed Jack Nicholson in the Cukoo's Nest with my hand madly running through my hair and an insane look in my eye, but it was painless for me and the kids didn't notice a thing except my cheerful and likely irritating singing, which they are totally used to anyway. So, probably not your most conventional method, but worked for me. By the time I had removed all I could for the evening I had my night cap in place and all was well.

As for the remaining tufts, I will see what to do. Shaving concerns me a little because of the radiation irritation on the scalp, but we shall see. I believe there is a specialist at the wig store at UCLA who can help me break through to the other side successfully.

On another note entirely, something has gone terrible wacky in my stomach over the last few days. For no clear reason, my abdomen has distended (and I mean really distended--I look like I am ready to give birth any minute to a full term baby which happened to grow in the span of about 40 hours). My children were astounded, thinking they were suddenly getting a sibling, no joke. This is not a normal side effect of the brain radiation or the medications I am on as far as the two doctors who have seen me in the last two days can ascertain, so I get to go to the hospital today for pokes and prods and scans to see what the heck is going on in there before I actually pop.

Could be fluid, could be blockage of some sort, we shall see. I am not in any pain, and it is a good thing I am so used to looking and feeling pregnant because I am just going with it. What else can one do? The waddle, once you've had it, never leaves you, it turns out!

Nonetheless, I can't imagine there is any really good or positive reason that this is happening, so I give this to you, along with my balding woes, to think good thoughts for me and say more prayers that this will all go well so I can get back to the business of cheerfully spending time with my family rather than doctors (who really can be great, but enough already, OK?).

Wish me luck, and I'll keep you posted.

Peace

I thought I would just take a moment to let you know how very peaceful I am, in the midst of all of this craziness. Maybe it will help those of you who are worried about me feel better too.

There is no doubt that this is exceedingly difficult on me physically right now, but as long as my peace is in tact, anything can be faced with complete joy. Even this.

The only component required for peace on earth, I've learned, is to do your very best to be right with God. I know many of you who read this blog are not particularly religious, but please indulge me on this occasion, as my faith is such an integral part of this journey for me and I cannot leave this part out any more than any of the medical particulars.

As a convert, it has taken a long time for me to become a fan of confession. I believe God is a loving and merciful God who did not create any of us to do anything other than love us. If we come to him contritely when we have gone astray, he is our father and will always run to us in love, ready to forgive us. I did not always believe this needed to happen inside of a confessional and indeed I believe it happens many times outside of one as well.

But I am now thoroughly convinced that Confession (Reconcilliation) is an actual, real Sacrament, filled with tangible graces that offers a real life encounter with Christ himself. There is no substitute for this, especially when you are at a place in your life where you are uncertain as how much time you may have to make up for things you have not done as well as you would have liked.

Last week I had the most cleansing confession I've ever had. It left me with a completely clean heart and total peace ever since. I wish I had done it years ago. For years now, I have gone fairly regularly to confession and got out all the usual goop that tends to bog us down. But this time, I went back to my first general confession and went over things again from my youth that I know and understand were completely and technically forgiven the first time I confessed them. But in recent months I would remember a few things that I didn't say at the time or wish that I had said them better. So, I decided what better time than the present to clean the slate.

I just said it all. Everything I have ever regretted doing in my life, all out there, all embarrassing, all so unimportant now that I gave it all up. I was not talking to the priest (though I was), I was talking to God himself and I left knowing that I am absolutely forgiven and I have done everything I can do to make things right. Wow, what a great feeling.

After the priest reminded me kindly to now really, truly let these things go, I have. I am ready for whatever comes and with such peace in my heart.

Don't worry, folks, I am not preparing for my imminent demise or anything, I am just getting my soul in order so I can focus on what is the really important part of living--moving forward without regret or fear.

I know this is a very personal thing to share with you all and I hope I have not been too frank. I just thought some of you might be happy to know that real peace exists, no matter what is going on in your life. God will provide it upon request, and you don't need to wait for a terminal illness to go get it!

And for those of you who think I'm totally nuts...I promise I'll get back to medical stuff and fun kid stories tomorrow. :-)

Going, But Not Yet Gone

Here it is: the interim short cut, intended to make the falling out of gobs of hair easier to take.

Most of the kids hate it, but I am surprised by how much I like it, considering I have never worn my hair short. It is certainly easy--but not as easy as it will be in a few days when I will no longer require hair products of any kind! (That is oddly refreshing to consider... and lets you know exactly how far from myself I actually am right now!)

Stay tuned for new photos in a few days...if I can bear to post them. :-) Hey, it's just hair, right?!

Perfect Day

One of the great gifts of a very serious illness is the instant ability it gives you to figure out what is important. This is the second time I am receiving this gift. The first time, at my diagnosis a year and a half ago, I held on to it for awhile, but as I got better and more comfortable with life as usual, I began to forget. I somehow don't think that will happen again.

Yesterday after my brain zap my family loaded itself up into our giant van, picked up some dear friends and their kids and drove to Santa Barbara where we met some more dear friends and their kids and spent the whole day on the beach. The grown ups chatted (well, truth be told, I mostly slept in the sand with my head on Bella's giant dolphin stuffed animal but that worked very well for me) and the kids played in the water and the waves with each other all day until they were completely spent.

Around 6pm the real dolphins came out and swam back and forth, right next to the beach. We were mesmerized by their grace and simplicity, and I was completely happy there with my family and friends. I'm so happy Jay was able to take this week off to be with me and help me adjust. What a blessing.

Not for Wimps

No sirree, this cancer in the brain business is not for the faint of heart.

This is just a quick post to let you know I am here and surviving, albeit very strangely for me. Please bear with the syntax errors and nonsensical statements that are sure to come, as I am struggling mightily to keep my wits about me. The best way to describe how I am feeling right now is as a very drunk person who is trying hard to be extra careful about how she moves and speaks so no one will know exactly how altered she is (not that I have any past experience with this from my college days or anything). I am in a mental fog that makes me feel slow, stupid and extremely frustrated and my physical dexterity has suffered greatly. Typing and texting (!) have become very difficult and I am very easily overwhelmed by too much information or decisions. For a multi-tasker like me this is very hard to take. I just know there is still a smart person here inside just waiting to break out again when all this is over.

The good news is plenty--I have now begun all treatments (Whole Brain Radiation, Tykerb--the medicine for HER2+ cancer that crosses the blood-brain barrier, Herceptin to manage the currently stable disease below the neck, and Decadron for the brain swelling that is causing most of my physical symptoms like numbness, headaches and balance issues). All the darts are now being thrown, so all I have to do now is survive the intense fatigue and stomach upset that comes with this cocktail. In four months we will scan the brain and see how we are doing. Until then, I just try to stay awake as much as I can and have quasi-intelligent conversations where I can.

So far, the Decadron is the worst, as it makes me extremely emotional and I am trying to not alarm people with massive mood swings. My oncologist warned me about this and told me the story of an really tough NFL player he recently treated for a brain tumor who required Decadron. After the medication he became emotional and weepy. He said the personality transformation he went through was positively stunning, but that ultimately he became a much nicer person. So maybe that will happen to me too!

For someone in my situation, my prognosis is a good as can be hoped for and there is a reasonable chance we can eliminate these lesions from my brain by the end of the year. Even if we can keep them stable or shrink them a little that is also good. So, I am praying fervently for the complete miracle, while filled with gratitude for my community that has surrounded me and my family. I will not be myself for awhile, so please bear with me and know that I am fighting the good fight and not losing heart or faith in any way.

I am beyond grateful for your support and prayers.

Finally, to those of you who have been so kind to send notes and other things, I want to thank you and let you know that I am not in a position to be able to personally respond to these things right now, but know I am receiving them and am truly grateful for your thoughtfulness.

The Good Kind of Drama

The best drama in my life comes from Bella.

After independently completing her shower, where she used copious amounts of soap that didn't quite get rinsed out of sensitive areas, she experienced an unpleasant burning that made her cry. I explained that all she needed to do was rinse and pee and then all would be well. Rather than following this time-tested and sure-to-succeed advice, she chose instead to crumple to the floor and wail, "Whhhhyyyyy did God doooooo this to me!?"

My barely suppressed giggles did not help her feel better. However, her reaction certainly lightened MY mood and reminded me that, no matter what we are dealing with in life, how we react to it defines how important it becomes to us.

Now, perhaps we have a little religious instruction to complete with her...

Gearing Up for Another Miracle--Help Needed!

After a few weeks of dizziness, balance issues, mild headaches and right side body numbness, my oncologist ordered a brain MRI "just to be sure". All these things could be explained, after all, as long term side effects of the T-DM1.

Unfortunately, the medication is not causing these things. Rather, it is the 15 or so roughly centimeter-sized metastatic tumors that were uncovered in my brain today. Yikes.

After a brief freak out, I sensibly made use of my anti-anxiety medication. Turns out that stuff really works for major anxiety (it was actually prescribed to me for chemo-related nausea and that is what I nearly always take it for, so I was delighted at its effect on my very raw nerves). 30 minutes later I had regained control of myself and was ready to speak with my doctor to figure out what this all means for me.

There is no doubt this is a very unfortunate and major setback for me. Nonetheless, the cancer is completely controlled in my liver and bones right now, and this is a very good thing. Because of this, they can focus on treating the brain aggressively right now without worrying about more than maintenance for the rest of my body because nothing there is on fire. Thank goodness.

So, the treatment plan? First of all, I need lots and lots of prayers. Please kick them up, especially through the intercession of Bishop Don Alvaro if you are Catholic (or even if you aren't but are so inclined). I do believe he obtained for me my first amazing healing of the liver which remains clean even now, so I'm sure he can do a heck of a job with the brain! Prayers are what give me peace and the strength to face this with all I've got, so I thank you for them, in whatever form you care to pray them, from the bottom of my heart. I am specifically asking for COMPLETE HEALING. Oh, and prayers for my family would be appreciated as well please, as this is very difficult for them.

I am officially off the TDM1 trial now, but so love that drug that did so well for me for so long. It did its job beautifully but never had a chance in the brain because of its molecular weight. So, we are switching to a new chemo tomorrow. This one is called Tykerb, is for Her2+ cancers, and does cross the blood brain barrier. Those suckers aren't going to know what hit them in a few days. This chemo is in pill form and does not require a port infusion. I am guaranteed to have tummy troubles with this one, but we'll take it one day at a time with that. I will also have Herceptin infused every three weeks to maintain the disease outside of the brain. That one is no big deal. Very similar to the drug I have been on all this time, just a little milder.

In an amazing, and I mean truly amazing, flurry of activity I began the radiation portion of the show today. Same day as diagnosis, can you believe it? It often takes weeks to get started but my wonderful oncologist made a phone call and pled my case with the rad onc and he saw me within 20 minutes and I was actually receiving treatment a few hours later. I did not know it was possible for radiation oncology to move that fast and am so grateful that I was already able to attack this rather than wait seemingly incessantly for treatment to begin.

I will be having 20 treatments of Whole Brain Radiation (WBR). Every business day for 4 weeks. I will have these in Mission Hills so at least I don't have to go all the way into UCLA. I cannot drive for now, so I will need lots of help from lots of people, most of whom don't even know yet that they will be called on. Sorry! But if I've learned anything from all of this, it is that I need help. Humbling, to be sure.

WBR is an intensely fatiguing experience I am told, and this will last for several months after treatment. I have been advised by my doctor to accept all the help I can with the children during this time, as I will have no desire to remove myself from the couch. Hmmm...we'll see how that works out, but a nice thought! I may have some short term cognitive processing problems, so please bear with me if I can't remember what I was talking about or have a hard time finding a word. I am likely to continue to be off balance for awhile as well. But all this should get better over time.

I will be losing my hair in about a week. It may grow back and it may not. The plan is to cut it super short this week so I have less gobbing off. Maybe I'll look like Halle Berry. Or maybe I won't.

I am now on a fairly powerful steroid called Decadron to control the swelling in my brain. This should significantly reduce my numbness and headaches in a few days. That's the good news. The bad news is that I am virtually guaranteed to become an emotional wreck overnight. You may want to avoid me for the next few months. (Unless you want to see what I look like bald, of course!)

I am truly sorry to report such dreary news and pray that all of you who read this will adopt the cheerful and positive attitude that I must maintain to see this through. Lurking under this sunny outlook, however, is enough fire in my belly to attack this, so don't worry that I am going to turn into a passive little flower. I am mad at this sneaky, rotten disease, and I want it out of my body. Now. All of it. ESPECIALLY out of my brain, for goodness sake.

Thank you for your prayers, your kind thoughts, your patience with me and the help that always comes when I need it. I am blessed in family and community and wouldn't trade that for anything.

Masked Bandits

We are on vacation! The boys are doing two weeks of football camp at Marin Catholic High School, so we are staying down the street with our former neighbors who, for some reason I cannot comprehend, continue to welcome our enormous, sloppy, hungry, noisy family into their home for long periods of time...and actually seem happy to see us.

It has been six years now since we lived here, and I am realizing on this visit how many fundamental things I have forgotten about the place. Little things, like which street to turn on, and which grocery store has which products, but also bigger things having to do with the flora and fauna.

For instance, yesterday it was very hot. Unlike in our desert home where heat hardly matters because everyone has air conditioning, the heat descends like a velvet theatre curtain on the surprised citizens of Marin. Unused to it and unprepared for it, lethargy sets in for the general populace and city streets are nearly empty. The boys reported after camp that a full third of the boys took of their pads, declared themselves ill and sat out the practice in the shade. Accustomed to playing in full pads in 100+ degree heat, Joey and Sam were unfazed and wondered what was wrong with everyone.

At any rate, when I got back to the house yesterday afternoon, I pulled into the driveway and rolled down the windows so the car wouldn't get too stuffy in this crazy heat. As I was wrapped up in dealing with my napping child, I did not think a thing of the bag of trash I had accumulated during the day and left in the car to be dealt with later.

Bright and early this morning I went out to the car and found, to my horror, that it had been ransacked! The bag of trash, which unfortunately contained the buns rejected by my little girls during our hot dog picnic in the park, had been ripped open and spread throughout the van. There were crumbs on every surface...which are many in a 12 seat church van, let me tell you.

But that wasn't ALL that was on every surface.

Apparently, the family of raccoons that invaded my van upset their delicate digestive systems with their hot dog bun splurge and left copious evidence to support this theory all over the car. They tagged the seats, nearly all of them. They got the carpet. They even got three of the four sweatshirts the kids had carelessly discarded on the floor.

What is a mom to do with a van full of ripped up trash and raccoon poop at 7am? Get over to the do-it-yourself carwash lickety split, that's what! So there I was, armed with carpet cleaner, Febreze and disinfecting wipes, dumping tokens into the giant vacuum machine before the sun was fully risen, scrubbing with all my might. I could not take the kids to camp in a poop-mobile. Not even I am THAT casual.

So, the good news is that my van is really, really clean now and smells like lavender. The washing machine ran for a good portion of the day on the sanitary cycle so I have lots of clean sweatshirts and socks, too. You see, we don't have to worry about things like raccoons (or even most bugs) in the desert, so I have nearly forgotten completely that they exist in other parts of the world more hospitable to lifeforms of all kinds.

Makes me appreciate the desert.

Happy News in the Happiest Place on Earth

I just returned from two days at Disneyland with Sam. We had such a nice time, just the two of us.

Sam is a very low-maintenance kid. He is not a complainer, is very independent, just sort of does his own thing, nearly always happy. As a result, he sometimes gets less attention than the other kids who are, well, just louder and more insistent. We are aware of this and try to reward him for his easy-going nature whenever we can.

When I realized (without him saying a word about it) that the other three older kids all were going someplace fun this summer, Jay and I decided that Sam should have some fun too. I woke him up early on Tuesday with, "Hey, want to go to Disneyland?" I wish I had recorded how his eyes flew open and mouth curled into his handsome Sammy smile, because it was priceless.

Off we went to the crowds and had a great time just hanging out together. Even the lines were a pleasure with Sam as he never complained or asked how much longer. He is a good example of a cheerful person, one I should do a better job of emulating!

At any rate, on the morning of our second day, I got an email from my study nurse (have I mentioned how much I love her? She is so great about giving me information as soon as it comes up...and when you are waiting for test or scan results, every minute seems like an hour). She sent me a copy of my biopsy report that showed that both spots in the right breast are benign. What an unexpected pleasure that was to read!

So what did we do? Had a GIANT ice cream sundae to celebrate, of course! Then we went on California Screamin'. Love that ride.

Incidentally, I still have to have one of the lumps removed for pathological reasons I don't fully understand, but that does not lessen my delight in the results. I am greatly pleased that they are being so cautious with me given my Stage IV diagnosis. Makes me feel like I truly might be "salvageable" as my oncologist said. It's a good place to be.

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.