I Just Don't Get It

As many of you know, Jay is a supernumerary member of Opus Dei. I, while not a member, am a co-operator and participate in lots of Opus Dei sponsored activities, including the retreat I just returned from. I have great fondness and respect for the organization and simply cannot understand why, when I mention it, so many people look uncomfortable.

I have recently been doing some research to figure out why Opus Dei has a "reputation", and all I have come up with is fluff. Yet, for a something so completely unsubstantiated, there certainly is a lot of material to be found suggesting that Opus Dei is secretive, ultra-rich, a cult, elitist, actually controlling the Vatican, demeaning to women, or any other number of sensationalistic ideas that people want to put forth. Most of these theories pre-date The Da Vinci Code, so I can't even point my finger and say that Dan Brown started it all, although he certainly fueled the fire.

So what is it then? I must say I am helpless to understand. In my experience, Opus Dei helps people to become better Christians through being better at whoever they already are: employees, homemakers, spouses, parents and friends. The idea is that the world will be transformed through the transformation of individuals, so the more people learn to live the virtues truly and for the love of God, the better off the world will become.

Through Opus Dei formation, Jay and I have learned such shocking and scandalous notions as: think of others before yourself, pray a lot, make sacrifices for the good of others, be the best you can be at whatever job you do, be cheerful, trust God, strive to improve yourself, and other similar things.

But most of all, we have learned to thoroughly and completely trust God, as we are his children. This is what brings peace, and goodness knows I could not be dealing with my life right now if I did not have this total trust and peace. I credit my Opus Dei formation for the level at which I have arrived at this.

Opus Dei, of course, wants to grow so its formation can reach more people. This is a good thing, nothing scary or threatening. The group is not chasing people down and making them sign up, but instead encourages them to attend activities and then decide for themselves. Once someone decides to join, he or she actually has to wait awhile to be sure that really want to be a part of the work. Just to take myself as an example, in the ten years or so that I have been attending Opus Dei activities, I have never been pressured (or even asked) by anyone inside the organization to join.

Opus Dei does not tell its members how to think or how to vote, it only asks that one form his or her own conscience based on the principals of the Catholic faith (which all Catholics should be doing anyway). Opus Dei does not separate members from their geographical parishes, rather it encourages them to be as involved as possible. It supplements a Catholic's parish activities rather than replaces them.

Pope John Paul II was very supportive of the organization, as is Pope Benedict, so there is no truth to the idea that it is a maverick, wacked-out, red-headed stepchild of the church. Rather, there are many, many diocesan priests who are members themselves, though not actually Opus Dei priests.

So, I simply don't understand why people are suspicious of, put off by or otherwise threatened by Opus Dei. I, for one, think its great and am a far better and happier person for the principals I have learned through my involvement with it.

(Oh, and if any of my readers decide to join after reading this post, please let me know so I can pick up my free toaster! ;-).

Treatment #6

My, how time flies when you're having fun!

I can not believe that today marks my sixth treatment of T-DM1. This means we have been kicking this cancer without hesitation for 15 weeks. It also means that it is time for my second set of post-treatment scans, which will be taken on April 15th. Good thing my taxes are already done, or else I'd be stressing!

Seriously, I would be lying if I said I wasn't a little nervous about these scans, because they are high-stakes for me. I knew without a doubt that the first set of scans would be good because I could feel the regression of the tumor in the breast. Now that the only tumor I can feel externally is virtually gone, I no longer have a marker to assure me that things are continuing to go well. Now, mind you, I don't think things are growing like wild-fire or anything like that, but what concerns me is the possibility of stagnation or slight progression. Stagnation wouldn't be terrible news, but any progression, no matter how small, is cause for my removal from the study. So please pray that there will be none whatsoever.

I have no reason to believe that the news will be anything other than good, but I also don't want to be so naive as to believe that there isn't any possiblility of less than stellar news. So, I will continue to pray, have faith that all things are possible in God and, in the end, whatever happens I will have peace with.

In the meantime, it's off to sleep so those T-DM1 trojan horses can find their entry gates and deliver their poison. A beautiful thing.

In Full Retreat

Days on retreat. Recollection in order to know God, to know yourself and thus to make progress. A necessary time for discovering where and how you should change your life. What should I do? What should I avoid?

--Furrow, Number 177

I am just back from a peaceful three-day retreat filled with quiet reflection, spiritual reading and resolution-making. (Oh, and lots of sleeping, too.)

I do this every year and absolutely love it. I cannot recommend it enough. If you don't already do this regularly in your life, make time for it! I come back refreshed, clear-headed, calm, and ready to make positive changes in my life.

I am renewed in my determination to be the best mother I can be to my children, reconciled with my illness and its place in my life, sure that the path I am attempting to follow is the right one.

Peace. Cheerfulness. Hope.

This is good stuff.

Me? Healthy?

Well, clearly, no. But I'm trying.

For the first time in my life I am attempting to change my eating habits for the sake of my health rather than for the vanity of losing weight.

Those of you who know me well know that chocolate chip cookies are, by far, my favorite food. Followed fairly closely by cake of any sort. Chocolate works for me as well, as do really salty fries.

This being said, it is no small thing for me to substantially ratchet down my intake of these types of items and replace them with healthier alternatives, but indeed this is what I have been doing for the past three weeks or so.

I have been flirting with diabetes ever since three of my last four pregnancies were gestationally diabetic. I regularly check my fasting blood sugars, and have watched as they have crept up to their recent average of 114. This is solidly pre-diabetic. Flat out diabetic is 125.

And, as you already know, I am riddled with cancer, so now seemed like a good time to do whatever I can to make a quick u-turn on the path I am currently on. It would be a terrible irony if I were to beat cancer only to find myself living decades with diabetes! I hope, instead, to live long and healthy.

Three weeks after reading "Stop Prediabetes Now" and implementing much of what was recommended, I have arrived at a fasting blood sugar in the low nineties. I am hoping over time to bring it down another 10 or 15 points. As a bonus, I have lost five pounds. (In fact, my study nurse asked me what was 'wrong' at my last oncology appointment--she was concerned that my appetite had left me again!)

In addition to virtually eliminating carbs (sugar, bread, rice, pasta, potatoes, tortillas), I have substantially increased my intake of non-starchy fruits and vegetables, along with protein such as meat, eggs and cheese. I am also faithfully exercising 20 minutes per day.

I don't like to exercise. And I don't like meat. So, while this does not come at all naturally to me, I am giving it my best shot. I am not perfect, and I will most definitely not go the rest of my life without ever having another cookie or piece of cake, but it is my most sincere intention to make them rare treats. If I get a second chance at life, I want to treat my body with more respect this time around.

Wish me luck, as I attempt to convince myself that food is more for nourishment than for pleasure. 'Cause I still have a lot of self-convincing to do!

Awwww

Is it wrong that I love them best when they are asleep? OK, maybe not all the time, but definitely sometimes!

Bumper Sticker of the Day

As spotted by Jay in Pleasanton, CA today (San Francisco Bay Area):

"Global Warming? Have cats, not kids."

I don't think I need to comment. (Although I certainly could.)

You Can Imagine My Relief

We had a full house of preschoolers today. My neighbor Robin broke her elbow and had to get it cast this morning, so I had her two, along with a friend of Tony's who came over to play. These kids all know eachother well and spend lots of time together, so even though I had six kids under the age of five, it was a very peaceful morning.

One of the things the kids were playing with was a light-up turtle that displays stars on the ceiling of a darkened room. So, they were in the hall closet for awhile, which is windowless, so they could see the stars. I was folding laundry (as usual) just outside the door so I could hear their squeals and giggles, which were, for the most part delightful. Have you ever listened to a bunch of three and four year old converse? It is pretty amusing stuff.

Hours later, while I was driving with them, Bella's announcement to Tony's friend tuned me in to their chattering: "I'm going to love you in the closet!"

Needless to say, I was dumbstruck. My head began to spin with questions. What was going on in that closet, anyway?! Has our world come to a place where I have to gender-separate three year olds for fear that they will be kissing in closets? What kind of moron must I be to allow them to play behind a closed door, even if I am just outside of it and think I know exactly what they're doing? How naive am I? My THREE YEAR OLD is talking about love ,and in a closet for pete's sake!

It took an interjection from Tony, who speaks three-year-old better than I do, for me to realize my mistake: "No, Bella, it's not nice to lock people in closets."

Oh, thank heavens, she meant to say lock, not love. Hallelujia! Suddenly I was back in a world where three year olds are still innocent and nothing untoward is going on in the closet. Silly me.

Small Successes

This is a good reminder for all us moms who are feeling overwhelmed with the magnitude of what needs to get done. The idea, propulgated by the folks over at Faith & Family Live, is that each mountain is climbed by a series of small steps (something we all know but frequently forget). So, I am joining other Catholic mom bloggers to post my small successes of today...

1. I planted a tree, with four-year old Tony's help. It's an Australian Bottle Tree and, by itself, makes our back yard look ready for spring. So what if my arms are sore from digging?!

2. I got all of my laundry done and put away today. That last part is the key, as I often get it all washed but rarely put it away the same day.

3. I exercised. 20 minutes on the Stairmaster. Under heavy pressure from my husband who wants to extend my life as long as possible, I have done this for nearly two weeks now, missing only the day after my treatment (which I TOTALLY get a pass for).

So there you have it. Not bad for a Thursday, and a treatment week to boot. Listing these things makes me feel a lot better about all the things that have not yet made this list. For, surely, they are to come.

So, what were your small successes today?

The Latest

I had treatment on Monday, and treatment days mean I see my oncologist. This was the first time I had seen him since my scan results came in three weeks ago. He said the results were 100% positive and that we would continue on this path indefinitely: treatment every three weeks with scans every nine weeks.

When asked if he now believed a cure was possible, he said that, in his experience, Stage IV cancer could not be cured. This is simply because, even when it looks like it is all gone, it is often lurking, too small to be seen. So, you can never assume you have a cure, even when it looks that way. However, he also acknowledged that we were "playing football with United States rules on Mars" so, in other words, he has no idea what to expect from T-DM1 because he doesn't not have any history on this particular drug. I suppose anything is possible, but it is nothing he has seen so far. So, what we are hoping for, rather than a "cure", is an extended period of NED.

He expressed hope that we would have the problem, come 2014 or so, of deciding whether to continue virtually forever on the drug or risk what might happen if we stop it. That, in his opinion (and ours too), would be a mighty nice problem to have given where I started. His recommendation was that I not allow anyone to pry this medicine out of my hand now that I have it. I am in complete agreement, although the practical thought of going through treatment every three weeks in perpetuity is a bit exhausting.

As far as potential future surgery goes, he is now of the opinion that, depending on the next scan results, a lumpectomy followed by radiation might suffice rather than a complete mastectomy. This was a very pleasant surprise to me, as I had never even considered it as a possibility. In fact, the last time was had talked surgical options we were discussing double mastectomy and the removal of my ovaries as well, so this is a huge leap from there!

So, needless to say, the news was all positive. I am not sure, then, why I have been a little sad ever since our visit. I suppose the reality of this being with me for the rest of my life is hitting me. Given my initial rapid death sentence, I feel like such an ingrate for being even slightly disappointed with where I am now. Any month I am given is a gift, and I am acutely aware of that. Nonetheless, I am realizing now that the initital "I am going to die soon" fear is abating, that I am never going to be the same again, and that is hard to accept. I think this must be true of any major change in life (even run-of-the-mill aging, really!).

But, accept it I must, and accept it I will, and I will gladly hustle my tush down to UCLA for treatments, blood draws and scans 6 times a month with a smile on my face and a prayer of gratitude for every time I am able to go. And in the meantime, I will be hoping that the yet-to-be-written rulebook for Mars will be to my advantage.

A Wedding, A Funeral, and Two Birthday Parties

If my weekend was a movie, this is what it would have been called. However, since I am not in a movie, and Jay is not Hugh Grant (thank goodness!), I will just call it busy.

I had the great honor of singing at a funeral on Saturday. Although I did not know the man who died, I do know his daughter. He was 101 years old when he died! He left behind many children, grandchildren and great grandchildren, and it was such a joy for me to see the church filled with so many people who loved him.

Immediately following the funeral, I joined the church choir in singing at the wedding of two choir members. It was a five tissue ceremony for me--one of those weddings where the joy of the couple is palpable. I felt priviledged to witness it.

Later, at the reception, Sam caught the garter...and held it between his fingertips as if it were toxic waste. I was totally amused. Natalie, who is becoming quite a chunk, ate three pieces of wedding cake. I tried, believe me I tried, to feed her less, but she screamed and clawed her way toward the cake table so disruptively that I ended up giving it to her just to keep her mouth busy. That girl loves to eat.

When you factor in the other weekend invitations we had for the boys' sleepover birthday party and the girls' garden tea birthday party, our living room looked like Christmas, given the number of wrapped presents waiting to be dispersed.

In addition, we had the monthly meeting of our Faith & Family discussion group at our house today. For those of you locals that don't already attend, I invite you wholeheartedly to join us (the first Sunday of each month at 11:15). We support eachother in raising children in the Catholic faith, and our topics vary greatly. There's plenty of coffee and donuts, and kids are always welcome!

I guess I should feel bad that I didn't spend the weekend ordering the house for my upcoming treatment downtime, but I don't really--I had too much fun. (Plus, my dryer is broken again, so I couldn't do any laundry anyway; this is always a blessing as well as a curse.)

I hope you all had a nice weekend too!

Make-Your-Own Party

Every time I walk into the room, Natalie breaks into a little happy dance. It is the most wonderful thing. From her high chair, from the jump up, from someone else's arms...no matter where she is, she starts jumping up and down enthusiastically with complete abandon and pure happiness. I don't ever want this to end.

For the last month, Jay's dad Don and his wife Carmen have been visiting us from Guadalajara, Mexico, where they live. It has been really nice to have the company and the help around the house. I will miss them when they leave tomorrow.

Carmen and I speak mostly in Spanish (although her English is better than my Spanish now), so it has been good practice for me to have her here. I love the differences between the languages and enjoy thinking about how sentences are constructed differently between the two. I also really like some of the idioms of Spanish that I have learned. Which brings me to the reason for this post.

Yesterday, when Natalie broke into her usual happy dance upon my return, Carmen said, "Hace mucha fiesta!" which translated literally means, "She makes a lot of party." Of course, what she meant by that was that Natalie was very happy to see me. but for some reason, this struck me as extremely funny and will forever be a part of my vocabulary now.

How wonderful to be greeted by someone so happy to see you that they, indeed, make their own party. Viva la fiesta!

Time Off for Good (Blood) Behavior

You may have noticed that, lately, I have not been posting much about *The Cancer*. This is because, happily, I have nothing to report! Things are stable with me right now, continuing in a predictable pattern, with no highs or lows. I am loving this!

By bloodwork has been so good, in fact, that I even got this week "off" from driving to UCLA. This is the first week since mid-November that I have not been even once.

At last report, one week after my last treatment, my white blood cell count was normal (granted, it was the very lowest number it could be and still be normal, but normal nonetheless!), and my hemoglobin, which had been as low as 8.3 in recent weeks, was a whopping 11! Just under the normal range of 12-18. My liver function, which had been bordering on "toxic" just a few weeks ago is also nearly normal, with only one measure still running high, and not even very high at that.

Thanks to these numbers, I was able to get my teeth cleaned today! This is a luxury that I have taken for granted my whole life and never really appreciated until I was in jeopardy of being allowed to do so.

Yes, things are good. I believe I am becoming a walking miracle!

Bad Parenting 101

Here is a list of what NOT to do in order to teach your children responsibility and natural consequences of their actions...

1. Should your child, who generally finishes his homework at school, get in the bad habit of leaving his backpack in the car overnight, do not let this continue uncorrected.

2. If, against your better judgement, you HAVE allowed this to continue, and you happen to pick up this same child in your husband's car one day, most definitely DO NOT allow him to leave his backpack in the car, as there is no telling where it might go with your husband (even if your husband's daily routine is unfailingly predictable).

3. If you have completely failed at executing numbers one and two, and your child finds himself without a backpack as you are leaving to take him to school at 7am, absolutely, positively, DO NOT allow him to talk you into driving like a lunatic across town to the church where your husband's car is parked in order to grab his backpack and eventually deliver him to school, unscathed and with virtually no consequences to his irresponsibility other than, of course, your own highly elevated stress level.

4. Most of all, avoid number three if your ever-patient and long-suffering neighbor is waiting for you to be home precisely on time so she can leave with the remainder of the children who need to be delivered to an entirely different school, because doing so might cause a domino effect and cause her completely innocent carful of children to be late due to your son's error. Because even if they weren't actually late, they COULD have been.

There you have it. What not to do. Not that I would know all this from experience or anything...

Just When You Thought You'd Heard it All

For your daily dose of "What is our World Coming To?!" just click here.

Do you think this human rights commission might consider how I feel discriminated against? That I just may consider it a violation of my right to be able to raise my children with the most basic of traditional values...that girls born girls are girls and that boys born boys are boys?

Yeah, probably not.

I find it impossible to believe that this commission is protecting the rights of children rather than pushing their own adult agenda. After all, when is the last time you heard of a consiously transgendered sixth grader? For goodness sakes.

Now, please know that I am not a hate-filled ranting psycho. I truly feel sorry for people who are not comfortable in their own skin. But don't make me put my girls in pants when I happen to love their little plaid jumpers! And don't plant the idea in their heads that wishing to change their gender is as acceptable as changing their hair color, because it's not, and I guarantee you that my first grader is not going to come up with this on her own.

I guess I'm glad I'm not living in England right now. (And, I'm guessing the English Human Rights Commision is equally glad about this!)

Bella-isms

This morning, right after she climbed out of her buckle while I was driving...

Bella: Are you mad, mom?

Me: Yes!

Bella: Is it a huge mad? Let me see your face.



And not an hour later as I am singing Sunday's Gospel Acclamation in the kitchen...

Bella: This is not church.


Good thing she's cute. That's all I'm saying.

Happy Birthday, Bella!

It's official. Isabella is three now. So, that means we must be done with the terrible twos, right?

OK, maybe not, but as I told an incredulous Joey this morning, I wouldn't change a single thing about Bella. She is a totally unique, never-to-be duplicated, often frustrating, always adorable bundle of creative energy and I can't imagine our lives without her. Each day she gets sweeter, funnier, more endearing. Whether she is cooperating sweetly or stomping her little foot in fierce defiance I love her totally and completely.

Bella knows what she wants (though what that is changes every two minutes) and does not hesitate to go after it. That quality will serve her well, I'm sure, at many points in her life. Simultaneously, she is intensely loving and physically affectionate. She melts my heart when she says, "Snuggle me!" and reaches her arms out to me when I tuck her in. She is my most faithful visitor at 2am, when she, without fail, climbs into my bed and plasters herself to my side for the remainder of the night. I never have the heart to kick her out (to Jay's dismay)!

Her enthusiasm is delightful, her inconsistencies entertaining. One minute she is seeking Tony as her sole consoler after her mother has scolded her, and five minutes later she is pinning her latest disaster on him with an innocent, "Tony do it!" (although he was at school at the time of the offense).

Bella, you are shameless, outrageous, clever and passionate. You are the source of much laughter and love in our home. We can't WAIT to see what you become, because it most certainly won't ever be boring! We all love you so much. Happy birthday!

The Full Scoop

I'm feeling much better today, and it's a good thing, too. Jay managed to fix my dryer last night (which has been broken for several days), so if I was still down for the count today I might have drowned in a pile of dirty clothes. As it is, I'm superlaundrywoman today. And grateful for it, too.

At any rate, I am now able to give a more thorough explanation of how my scan looked, for those who are interested. Those who are not can skip the rest of the post and refer to the shorter version of this news contained in yesterday's post.

Before you can understand how good this recent scan is, you have to understand how bad the last one was. I haven't put too much detail up about what my liver and bones looked like when we began treatment, only that the cancer had spread there. In fact, I didn't really know myself exactly how things looked until I picked up my original scan report last Friday in preparation to understand the new results. In retrospect, I'm glad I didn't know the details until I was fairly comfortable that good progress was being made. My doctor was wise to be vague with me.

Before treatment, the cancer was quite widespread and intensely active. Besides the breast, which was basically one solid tumor, I had numerous affected lymph nodes, several of which had measurable tumors in the neighborhood of 2.5 centimeters, and at least eight measurable tumors in the liver. The largest of these was 2.4 by 1.7 centimeters. Cancer virtually covered my bones from neck to knee and, again, was intensely active. In fact, it was so active that the radiologist who reviewed the scan believed that I must be on bone marrow stimulating medication in order to create that kind of metabolic activity. I was not, nor had I ever been.

Last week's scan shows a completely different picture. When examined for actively growing cancer, the breast and liver are noted as "resolved" while the skeleton and lymph nodes are "mild" or "interval reduced". The liver tumors, although still numerous, are now all "subcentimeter". The lymph node tumors are slightly reduced. The sclerotic lesions on the skeleton are unchanged. (Which means they are no longer growing, so this is great news.) I am not sure how bones heal themselves from cancerous lesions, so I will have to ask my doctor more about that. But either way, bone damage is more inconvenient than life-threatening. The liver was, by far, our greatest concern and it is responding beautifully.

Perhaps most significant is that I have made this kind of progress against this nasty, aggressive cancer in just 9 weeks. Only three treatments. There are many people who are on chemo for years without ever hearing news this good. The hope is that I will continue to respond to this drug for many months to come, and there is every reason to believe that I will continue along this path, although, admittedly, I still have a way to go.

In my eyes, my biggest danger right now is hope. When first diagnosed, I never imagined a cure was possible. I never could have entertained the idea of receiving a NED scan someday. (No Evidence of Disease.) Now I want that, am hoping for it, will be disappointed if I don't get it. I prefer, from a self-preservation standpoint, to be less hopeful, but here I am. Full of hope, reassured that prayer really does work, and completely grateful for the medical care I am receiving. Thanks be to God.

Solid Progress

I am truly exhausted tonight, too tired to write the upbeat post that my complete scan results deserve. So, since I know so many of you are waiting to hear, I thought I'd put up a quick post to say that the news was overwhelmingly positive, especially as far as the liver is concerned. I will post all the details tomorrow--probably more than you want to know. But the summary is that I am responding very, very well to this treatment and will continue on it indefinitely. Thank you so much for your continued prayers and amazing support. How blessed I am.

Nice Try

Last night we all sat around the table discussing our goals for lent--what we are trying to do less of and what we are trying to do more of between now and Easter. We like to do this, as I'm sure many families do, as a way to clarify our own goals and to understand eachothers so we can help one another out.

For example, if one child is giving up ice cream I am going to try to find alternate things to have around. If another is giving up a particular TV show, someone who might watch that show should remember to do so in the playroom so as not to shut the first child out of the family room. Little things like that, I've found, can help us all keep our Lenten promises and help keep the peace in the home.

As far as food sacrifices go, we were all busy consuming lots of whatever we were giving up. I, for instance, had a disporportionate amount of chocolate yesterday, in true Fat Tuesday style. Lindsey was slurping up Pixie Stix. Jay got his blender whirring for his farewell margaritas.

Over the blender noise, Joey declared, "Since I'm giving up margaritas too, I need to have one now." Points for creativity, but I don't think so.

On another note, besides giving up margaritas, Jay has also nixed Caribou hunting and hot air ballooning. It's going to be a tough 40 days around here...

Half the Story

The scan results have been slow to come in today. Thanks the the holiday and the need for the radiologist to precisely compare this scan to the last one, the news is trickling in instead of coming in one fell swoop.

So far, we have only preliminary results from just one half of the procedure, the PET. However, the news from this is as good as it could possibly be. The PET shows virtually no evidence of active cancer anywhere. The tracer was not picked up intensely in any spot, including the liver.

So, what we know is that the cancer is not growing. It has at very least been stopped in its tracks. Tomorrow when the CT results are laid under the PET we will be able to see the size of the breast and liver tumors and, hopefully, the bone lesions as well. Of course, the hope is that the tumors have shrunk substantially or even disappeared completely. But for tonight, just knowing that the cancer is no longer on the attack is enough for me.

Naturally, I will post more news tomorrow when the doctor calls. In the meantime, my treatment today has left me quite tired, so I think I'll spend the rest of Fat Tuesday sleeping. Party down!

Procedures

On Friday I had my first PET/CT and echocardiogram since my treatment began. I don't yet have the results, but hope they will be ready when I see my oncologist tomorrow. I am very hopeful!

I, who knew next to nothing about imaging before all this began, am becoming a "lay" expert in these types of procedures. This is probably a good thing, since I will likely have many dozen more over the next few years as we attempt to beat back this cancer. Now, this may not translate into the most interesting of all posts, but nonetheless, I thought I would share some of what I have learned and what they are like for me.

I am completely amazed at the technology we have available to us for diagnosing and monitoring disease in our bodies. I really had no idea what things had evolved to beyond standard x-rays. Have you seen the recent GE commercial where a man is remembering all the beautiful things he has seen in his life? This man, at the end of recounting various splendid scenes, says that even compared to all these natural wonders, the most beautiful thing he has ever seen is the radiology image that detected his wife's cancer in time to save her. I totally get this ad now.

Right now the PET/CT is the test we are most interested in, because it will show how the liver tumors are responding to treatment. I will be repeating this every 9 weeks or so indefinitely. PET stands for Positron Emission Tomography. The PET scan, when overlaid on a CT scan (which is basically a 360 degree x-ray) lights up cancer cells, sometimes even when they are too small to be considered a tumor or able to be seen on a CT alone.

The PET scan is part of what is called "nuclear medicine" because it uses a radioactive tracer to find the cancerous cells and light them up for the "camera". This tracer is attached to glucose and injected via IV for "uptake" into the highly metabolic (usually cancerous) cells of the body. Bone scans, too, are nuclear medicine, but instead of attaching the radioactive tracer to glucose, they attach it to phosphate instead.

To prepare for the PET/CT scan, I can eat no carbs for 24 hours prior and not eat at all for 6 hours prior. After they inject the tracer I have to lie perfectly still for 45 minutes (seriously, I cannot even read or check my email--I generally fall asleep) while it races around my body attaching to all the cancer cells.

While they are placing the IV, I get to pound three cups of unappetizing oral contrast for the CT part of the scan. The CT places the images of the organs where they are so the PET results have some context.

Once in the scanner I place my arms over my head and lie without moving for another 20-30 minutes. The first part is the CT scan, which goes very quickly and then comes the PET scan which takes much longer. Both are in the same machine and are virtually indistinguishable from one another except that they put another type of contrast in my IV for the CT part.

By the time I get off the table I am practically glowing and would most definitely set a geiger counter off. All this radioactivity might concern me if I were perfectly healthy, but as it is it doesn't really bother me. I like to joke..."What's it gonna do, give me cancer?!" This is an oddly refreshing point of view.

Reading the radiology report from a full body scan is really interesting because, not only do they point out all the areas where they found cancer and how active that cancer is (as measured by the rate at which it sucked up the tracer), but they also indicate non-cancerous things. For instance, I learned from my last scan that I have a non-obstructive kidney stone and a non-symptomatic maxillary sinus cyst. Who knew? (And, yes, I know, who cares?!)

In addition to the PET/CT, I also must have regular echocardiograms, as the drug I am taking puts me at some risk for heart damage. So far all my EKGs have been normal but this is a deeper picture, via ultrasound, of how the heart muscle looks. This is a quick (15 minutes) and easy procedure, although I remain of the opinion that ultrasounds of babies are far more interesting.

So, apologies for this less than riviting post, but I thought some of you might like to know what these various procedures entail and what they are like. It just may make the results I hope to share tomorrow a little more relevant.

Positive News of the Negative Type

I received the results back from my BRCA1 and BRCA2 tests to find that I am negative for a mutation on either of these genes. This is good news.

A mutation in either of the two BRCA genes places a woman at a very high risk of developing breast or ovarian cancer in her life (as much as 87% versus 8% for the general population). So high is the risk and worry from these genes, that many women who test positive elect to remove their breasts and/or ovaries prophylactically just to ease their minds. Whenever someone in their 20s or 30s develops breast or ovarian cancer, as I have, a gene mutation is a possibility, so testing makes sense.

While, of course, it doesn't much matter for me personally at this point whether or not I carry these mutated genes (i.e. I already HAVE cancer so I don't have to worry about getting it), it matters a whole lot for my children, especially my daughters. I am quite relieved that they will not have the grave concern that accompanies a positive test.

Nonetheless, my children now have a "strong" family history of cancer with a parent diagnosed under age 40, so they are at increased risk still, but not nearly as much as if the gene test had been positive. As we all know, sometimes cancer "just happens". There is no way to know why or how. So it is with me.

Regardless of gene status, I have great hope that by the time my children are grown cancer will no longer be the fearsome disease is today. Keep on it, researchers!

Stoic

This is a photo of Sam's Pinewood Derby car, six hours before the big race.


(Unfortunately, this is also how it looked at race time.)

Poor Jay. He labored intensively over this car for days, with Sam doing his part with painting, decals, axle prep, etc. When Sam left for school the morning of the impound, he was smiling from ear to ear in anticipation of that night's race and the fact that his entry was the best car the Di Silvestri house had ever turned out.

Jay was doing a final weight check when he saw it was just a smidge over the limit. Anyone who has ever had a Cub Scout knows that any car over the limit does not race. Period. So, Jay used his time honored trick of drilling out a little bit of wood from the bottom of the car to edge down the weight.

The next thing I knew, Jay was standing in front of me, the car in pieces in his hand, with a completely horrified expression on his face. Apparently, the drill hit the internal weights he had positioned near the back, spun them around and irreparably damaged the car. All he could think about was facing Sam and telling him he had no car to race that night.

The school had a morning mass that day, so he did not have long to torture himself. Jay intercepted Sam on his way back to class after mass, delivered the bad news and waited for him to crumble. Oddly, this did not happen.

Sam, although definitely disappointed, was completely consoled by Jay's promise to spend some special time with him over the weekend to make up for the lost race. I was thinking that Sam would want to go miniature golfing or bowling, just him and Dad. But, no. He surprised us both by asking to simply help Jay prepare the dinner for the monthly Knights of Columbus Family Movie Night.

At first, Jay was unsure about having Sam in a commercial kitchen where he was making dinner for 175 people. Plus, he was making chicken wings en masse for the first time and wanted to concentrate on making them correctly. After only a moment's hesitation, however, he acquiesced, and so off Sam went to join Jay in the kitchen.

When I caught up with them several hours later, I was met with perfectly prepared buffalo wings and a beaming father and son. Turns out, Sam was an actual real help in the kitchen, breading somewhere in the neighborhood of 600 chicken wings after being taught what to do. He was so proud of himself that he carried himself differently all night, and Jay was bursting with his own pride at how Sam had handled what could have been a disastrous situation.

Instead of crying and moaning over how unfair it was that he didn't have a car after working so hard, Sam spent one of the happiest afternoons of his life working alongside his dad in the kitchen, providing a real contribution to the meal.

I have no idea how this worked out so well. I wish I could say I had some wisdom that helped this come about or, more important, that I learned how to turn around a situation like this again in the future, but I don't. I'm just slack-jawed and grateful, but not half as grateful as Jay. Go, Sam!

Moving On

When I was first diagnosed with cancer (and learned that it had spread to bones and liver) the primary thing I wanted to know was how much time I had left. Six months? A year? 10 years? My oncologist couldn't tell me, but rather gave me a variety of scenarios. The best case was that I could keep the cancer at bay for many years, decades even. The worst case was that it would get the better of me within a year.

The internet is a dangerous place to be when you have Stage IV cancer. I have learned to be very careful about statistics and probabilities, to check their sources and the data that feeds them. On a bad day I could easily convince myself that I had better get my affairs in order quickly.

Nearly three months have passed now since my diagnosis, and I no longer fear the general statistics. I am younger and stronger than most of the "numbers", and I am blessed to have access to an amazing super drug that just may extend my life beyond anyone's expectations. Moreover, I am completely at peace with this disease and am really, truly OK with whatever the outcome turns out to be. Naturally, I hope for (and will fight like crazy to obtain) enough years to see my children's children. But if that is not in the cards, so be it. Being settled about any possible outcome is absolutely vital to my peace of mind.

That being said, as time goes by, I am finding that I am thinking more and more about things NOT having to do with my illness. Large portions of the day pass now where I forget I even have cancer, so consumed am I with things I used to be concerned with: budgeting for the upcoming year, updating scout patches, paying taxes, planning for the kids' ever-present school projects, general running of the household. As the days pass, I am spending less and less time pondering my health, how well I may be responding to the drug and what is coming next for me.

What I am trying to say is that I am moving on with my life. After being suspended in a state of confusion and concern for months, I am slowly coming out of this daze and resuming life as usual. I will be on medication indefinitely, and I will have whole body scans every few months for the foreseeable future. But these things are now not extraordinary to me...rather, they are becoming part of my new normal. This means I can focus less on them and see them as just another part of my everyday existence, like washing the dishes or making the beds.

Yet, even as life returns to normal, I can't help but hope that the parts of me that have been improved by this experience will stay as they are. My outlook is healthier, my faith stronger, my eyes opened, and I don't want these things to return to how they were before. I hope they stay as souvenirs of these often difficult months now behind me.

I know this is a roller coaster, and that there is a lot of track ahead of me. Some days I will have big climbs and some days I will have big dips. Perhaps next week I will have a euphoric day when my scan results come in. Another day someone may tell me that things are not progressing as we would like. Regardless, I have come to understand that although I may someday die of this disease, it is not likely to be right away and I have lots and lots to do before that happens.

The moral of this story? Live and love as though you only have six months left, but plan prudently for many decades. This is exactly what I intend to do.

Quite Proud of Herself

This is my first attempt at posting a video. However, I could not resist this trying this one because I just had to share some of Natalie's sunshine with all of you. What a gift from God she is!

These are some of her first steps, assisted. So far she has also taken as many as three or four at a time unassisted, so it won't be long before she is walking all over. Happily, it does not seem the brace affected her development too much.

Hope this works (obviously, I am not very technical), and may it bring as much joy to you as it does to me each time I watch it.

The Visitation

You know, I don't really choose what I am going to post; rather, the posts choose me. I find myself thinking of the same thing over and over and it doesn't go away until I write about it. This is especially true of this topic, which has been much on my mind for several weeks.

Continuing on our tour of rosary mysteries, today's stop is Mary's visit to her pregnant cousin Elizabeth. I am supposing that most of you are well familiar with this story, but I am going to summarize it anyway, as I have at least a few Jewish readers, one of whom told me he had learned some things about the New Testament from reading my blog. Plus, it never hurts to review, right?

When the Angel Gabriel appeared to Mary to tell her that she was to be the mother of the Messiah, he mentioned that her cousin Elizabeth was also expecting a child. Elizabeth was by all accounts too old to bear a child and had long been considered barren, so this must have been quite a surprise to Mary. However, given what she had already heard about her own conception, it was probably not as shocking as it might have been.

I'm quite sure that if I had been in Mary's place I would have barely heard the footnote about Elizabeth, so stunned would I have been by my own personal news. (Of course, this helps explain why God chose Mary and not me, but I digress...)

The very next thing we know, Mary is making haste for the hill country to visit Elizabeth. She did not pause to think of how she was going to navigate her own situation, how she was going to explain this to her parents, or what she was going to tell her fiance. Nor did she run around telling everyone the incredible news that she was the chosen one (again, I'm pretty sure I would have told at least one good friend or two). Instead, she raced straight to her cousin, to help her in her third trimester of pregnancy. Never mind that Mary was in her own first trimester with the Savior of the world and could have easily justified resting and protecting the life within her. Never mind that she was quite likely nauseous and fatigued herself. Mary did not waste a moment thinking of herself. She went to serve Elizabeth without question, and there she stayed for several months.

When Mary first arrived to attend to Elizabeth, her cousin was filled with Holy Spirit and said, "Blessed are you among women and blessed is the fruit of your womb. And why has this happened to me, that the mother of my Lord comes to me? For as soon as I heard the sound of your greeting, the child in my womb leaped for joy. Blessed is she who believed that there would be a fulfillment of what was spoken to her by the Lord." Of course, we find out later that the child Elizabeth is carrying, the one who leaped for joy at Mary's very presence, is John the Baptist, who prepares the way for Jesus.

You may be wondering, by this time, why this has been so much on my mind, why this is the mystery that I keep getting stuck on of late. Naturally, I am going to tell you.

I, who have always been one to stay fairly wrapped up in my own affairs and duties, and the needs of my immediate family, have been taught a great lesson by all of you, my friends and family. I have learned, through this journey, what true charity is and how it is practiced. I have become Elizabeth and all of you are Mary.

I am standing at the door of my hill country home, stunned that you should come to me with meals, cards, gifts and so very many prayers. In the threshold, I stare in disbelief at the pure generosity of you all, who give without thought to your own personal situations and concerns, just as Mary did.

Among those of you who have unceasingly cared for me and my family since this adventure began, not a one is without personal difficulties. In fact, the more I learn about what some of you are struggling with as you stir a pot filled with dinner for my family or write an encouraging note to me, the more amazed I am at your ability to put yourselves aside to minister to another.

Some of you have husbands who are, or are yourselves, unemployed. Some, though employed, are struggling with family businesses in this economic downturn or balancing a financial house of cards. One of you has been displaced completely from your home. Another is facing foreclosure. Still others are dealing with the illness of their parents, and some with their own illnesses. Several are experiencing trouble in their marriages or issues of infertility. I am particularly touched by those of you who are battling cancer yourselves and have taken time to prepare a meal or call to see how I am doing. As I am beginning to get my bearings now, I aspire to imitate you. And please know, the intentions of you all are in my daily prayers.

I naively once thought that those who helped others extensively as I am now being helped had lots of time on their hands or didn't have complications in their own lives. I understand now that the most generous of you are often the most battle weary. I must not wait for the elusive time when all my children are grown and my personal affairs are ordered to be charitable. Rather, it is something I must incorporate into every day.

As Mary came to Elizabeth despite her incredible burden/gift, so do you come to me. And as John the Baptist leaped for joy inside Elizabeth upon her arrival, so do I and my family when we hear the sound of your greeting.

Thank you. I am truly humbled.

Misfire

Not long ago I was standing at the bottom of the stairs talking to a friend when Sam came running down crying because Tony hit him in the head with a toy car he had thrown.

I immediately called for Tony in my "you're in trouble and mom means business" voice.

Tony sprinted to the top of the stairs, gave me a completely exasperated look and said, "I was AIMING at Bella!"

(Those of you who personally know Bella will understand why Tony felt no further explanation was required.)

Miracle in Progress

We had very good news at the doctor this morning.

Today's physical exam suggests that the primary breast tumor is just 30% of the size it was six weeks ago. Further, Dr. Glaspy expressed confidence that we would see similar significant progress in the liver when we get the results of my upcoming scan.

As I have mentioned before, Dr. Glaspy is a straight shooter, not one to give false hope. In the past when I have asked him for statistics and probabilites he has been reluctant to give them, or to even suggest that I am likely to have a happy ending (although he has certainly always allowed for that possibility). Therefore, it is his reaction to my progress that tells me the most about exactly how good this news is. After the appointment, Jay and I agreed that the best way to describe it was "suppressed giddyness". Indeed, he was smiling like the the cat who ate the canary as he anticipated the result of my scan, which literally flooded me with hope.

So far, I am feeling better than usual post-treatment. Maybe my body is adjusting to the medication? Or perhaps, like last time, it will hit me more significantly later in the week. Either way, it is nice to be awake right now to enjoy this good news.

It feels as if we just might be watching our miracle unfolding before us. Please keep those prayers coming, because they sure seem to be working!

This and That

You know it was a very busy week when you are actually looking forward to the natural down time provided by your upcoming chemotherapy treatment...

It is California Mission time for Lindsey, so we have been helping her refine her paper and, most of all, complete the detail work on her mission mosaic. She could do the big areas herself but did not have the steady hand needed to get the glue brush into the small areas once there were materials already on the perimeter. Therefore, I personally smell like all the different kinds of spices we used to create the image of Mission San Fernando. As it turns out, red pepper flakes, coffee and cumin do not exactly form a tantalizing odor when combined. I can only imagine what the classroom is going to smell like when all the projects arrive tomorrow!

Coinciding with Lindsey's final mission weekend was the last weekend to complete Sam's Pinewood Derby car for Cub Scouts. The whole house smells like bondo (overwhelming even the combined spice smell) and I'm pretty sure I will never get the fine sawdust out of the cracks in the patio. But the Indy car design looks great, and Sam and Jay are both pretty proud of the work they have done. Let's hope it's as fast as it looks.

You may wonder why, if this was the final weekend for both projects, we did not complete one or the other ahead of time. Well, for one thing, we are procrastinators who really need a deadline to spur us into action. But that aside, Joey had a report on the Loma Prieta earthquake due Friday that consumed the week before. Needless to say, I am looking forward to a little "no project" time.

On an entirely different note, tomorrow's treatment is my third, so it is the last one I will receive before my next PET/CT scan. I don't have any scheduled treatments after this, as all decisions will be made based on the results of the scan. It should happen in the first or second week of February and will tell us a lot about how this medicine is working, and far more objectively than my own observations can.

After the scan I will know if I will continue on the study drug and perhaps have a better idea of how long. I will also know more about when and if a mastectomy is in my future. I am looking forward to the scan but am also a little nervous about it, as it is very easy for me to be positive right now while assuming that a cure is in process. If the results are not as good as I am hoping they will be, I will have a little adjusting to do. But adjust, I shall, to whatever the outcome may be.

Speaking of outcomes, I would like to say an enormous THANK YOU to all of you who clicked over to the Relay for Life page and donated to the Saints and Spirits Take Flight team. Virtually overnight your donations doubled our funds raised to date and we are now the leading team for the event so far. I am very excited about this and thank you all so much for your generosity and kind notes.

So, wish me luck tomorrow. May the cancer be horrified to see more of that T-DM1 arrive in its neck of the woods!

Relay for Life

I am truly delighted that my regular babysitter Alyssia has created a team in my honor for Lancaster's Relay for Life. This American Cancer Society event takes place April 17-18 at Quartz Hill High School.

The team is named "Saints and Spirits Take Flight". (For those of you not local, the Catholic Schools in our area are the Sacred Heart Saints and the Paraclete Spirits, so this team name signifies the families involved with both the K-8 parish school and the valley's Catholic high school.)

This is a 24 hour event where teams camp out at the high school football field in tents and take turns walking or running around the track. Each hour is covered by a team member, representing the fact that cancer never sleeps. The team as a whole raises money for cancer research.

At night, the track is lit by candles, each burning in honor of a donor's loved one who has fought or is still fighting this disease.

So many of you have asked what you can do to help me, so I put this information out here not to pressure you into donating or joining the team, but just so you know this is something you can do if so inclined.

If you follow this link, it will take you to our team's section of the American Cancer Society's Relay for Life site. There are options on this page to 'Join the Team' (a great thing to do if you are local and really want to get involved), 'Donate to the Team' (a wonderful thing for anyone who can do it, near or far) or 'Luminaria'. Luminaria is your opportunity to light one of those candles that burns all night for a specific person you may have lost to cancer or who is still fighting the fight.

I have gained so much from the research done on this disease so far. The tireless work of scientists and doctors could not take place without the donations of people like you and me. As I make my donation, I am thinking of how much more has to be done before my children don't have to fear this disease.

If you can, please join the Saints and Spirits. Anything at all is a help.

Happy Birthday, Lindsey!

Double digits. Unbelievable!

Lindsey, you are growing into an amazing young lady. You are caring and generous, funny and clever. I love your contagious enthusiasm and your passion for the things you care about.

I am blessed to be your mother and am so glad to share my days, my home, my life with you. Don't grow up too fast, because I am treasuring every moment.

Surprise!

Our family moved to Southern California from Marin County (just north of San Francisco) four and a half years ago. In doing so, we left behind some amazing friendships that we made and enjoyed over the ten years we lived in the quaint towns of San Anselmo and Fairfax.

While we lived there we developed a special relationship with four other families and spent lots of time together with them. It was one of those wonderful situations where the women are all friends, the men are all friends, and the children all get along too. Leaving this was the most difficult part of moving. However, as life has progressed for our various families, all but one moved away from the little towns and scattered from Canada and Oregon to Glendale.

This weekend one of those families, the only one remaining in Marin, came down to visit us. We get together pretty regularly, usually three or four times a year, and we always have a great time. Since their arrival late Thursday night I have especially been enjoying my dear friend Tina who I miss dearly.

Imagine my surprise as I arrived home after mass last night to find my good friends Melissa and Andrea waiting for me in my driveway in their pajamas with sleeping bags in tow. Now, Melissa lives in Glendale so it isn't all that unusual for me to see her, although since I wasn't expecting her it was a wonderful surprise. However, Andrea lives in Ashland, Oregon, so I was beyond stunned to see her. In fact, I could not believe my eyes. She had flown down that morning to surprise me and everyone knew about it except me.

I quickly learned that we were having a totally girly sleepover and that all the husbands had valiently stepped up to care for their many children so we could enjoy an evening together, plus lunch the next day. I was in heaven.

Imagine my further surprise when the doorbell rang just before we left for lunch today and it was Anna Lisa and her family, the last of the original five of us. They drove down from Santa Barbara today to get in on the surprise. It had been more than five years since we had all been together, and we got to spend all afternoon together today.

With neighbor Robin in tow (who got along with them all as if she had known them for years), we all went to lunch and spent three wonderful hours together. I cannot remember the last time I was so completely and delightfully surprised. I have really missed my friends!

If it wasn't for the whole "this could end badly" part of having cancer, I would have to say that it is one of the best things that has ever happened to me. It is bringing my distant friends close and my close friends closer. It is cementing my immediate and extended family. It is bringing out the best in everyone I know, including me.

I would have never expected this. How surprising life can be!

Emerging

Like a butterfly departing from its cocoon, so am I breaking free from the illness that characterizes my treatment week. The last two days I have been cautiously resuming my life and it feels great.

I am now settling comfortably into a pattern of life. It goes pretty much like this: 7 days of sleeping and just barely functioning, 7 days of "ramping up" to semi-regular activities like helping with homework and driving again (with plenty of rest and naps thrown in between activities), and 7 days of feeling almost completely normal with regular energy levels and lots of enthusiasm for all the things I did not get done during the prior 14 days. Then I begin all over again.

This is not so bad. I can definitely do this. To be quite honest, sleeping is not a terrible curse for a mother of seven who hardly ever gets enough under normal circumstances. Similarly, nausea is a really good diet plan for someone who has been meaning to drop the baby weight for about three pregnancies now.

Treatment weeks bring friends and family close, and this I treasure. Our guest room has hardly been empty since my diagnosis and I love it. I am being wrapped up in love and care from those around me so that I really can rest and I really can take my time ramping up to normal again. I am so blessed by this all.

I have been trying very hard to go to mass every day, as receiving communion is, in my view, medicinal as well as spiritually uplifting. In the bible, those who simply touched Jesus' cloak in faith were healed immediately, so how can meeting him in the Eucharist each day fail to assist in my healing?

I have found it difficult to get out of the house and to mass during treatment weeks. This problem has been solved beautifully for me, as Jay has now been trained as a Eucharistic Minister who brings communion to the sick specifically so he can bring me communion on days I cannot go. This is a beautiful thing for us both and I am so thankful to those at our church who supported us in making this happen.

Among other things I am grateful for is the fact that I am able to continue to cantor two out of three Sundays. When this first began I was fearful that I would be too ill to sing anymore at all, but as it is turning out I really can make it happen on the two "off" weeks. Yay!

So, there it is, life as I will experience it for the indefinite future. I am grateful for each day, and it shows in how I am spending my time. (I can't remember the last time I played so many board games with my kids!) Each day is clearer and more precious to me. The mundane is not so much anymore, and this is a really good lesson to learn, for anyone.

Feeling It

Yes, indeed, for the past few days I have been feeling as if I actually do have a serious illness. Most of the time I don't feel much more than tired and nauseous, but yesterday and today have been at a new level. Yesterday I slept 18 hours. Really. 18! I didn't know a person could sleep that much. Today I got out of bed only to shower, and was so weak and chilled by the end of it that I had to wonder if I wasn't better off grimy.

I learned at my last treatment that I am moderately anemic, so much so that there was some discussion as to whether or not treatment could proceed. Happily, my oncologist is all about killing cancer and he is on a mission with me, so he barely hesitated, slowing only to take another six buckets of blood from me to try to pinpoint the cause so he can treat it most effectively. Yes, I like this man. For those of you number folks or medical types, a healthy red blood range is 11 or 12 to 18 and mine has been steadily declining to its new low of 8.7. Apparently at 8.0 it becomes "severe" and lots of unpleasantries begin so we're hoping to hold her steady here. Probably not coincidentally, my oncologist is currently conducting a clinical trial on anemia during chemotherapy, so once again I am in the right place at the right time. Funny how this keeps happening, eh?

Happily, I am "feeling it" in another way too. My affected breast now feels so normal that I would not think to seek medical attention for it if I woke up with it for the first time today. In fact, I probably wouldn't even notice it unless I was pretty dilligent in a self exam. So, I may be feeling a wreck, but clearly so is the cancer. I believe the clock has been turned back on it somewhere in the neighborhood of 9 months in just four weeks. That's a miracle i'd willingly feel just about anything for.

Tales from the Infusion Room

It is easy for me to forget just how serious my situation is. Most of the time, I feel pretty normal and there is little external evidence of what is going on inside my body. My children keep engaged in all the little details of life, like school projects, sibling disagreements and constant clean up. If I wanted to, it would be all too easy to dive head first into complete denial about all of this.

This feeling ends completely when I enter the infusion room at my oncologist's office.

When I walk in and sit down, my first thought always is that there must be some mistake, as I most definitely don't belong in these surroundings. There is no way that I fit in with what I see: folks in wheelchairs, people either completely bald or with sporadic tufts of hair, patients with strange skin conditions. To be completely honest, it is frightening. Many of the patients receiving treatment around me look as if they are in their final months of life, and I'm sure many of them are.

At first I sit tensely in my chair, willing it all to be over. Then, as I begin to calm down, I start seeing more and listening to the conversations around me.

I see the other woman about my age with burns from her radiation, crying for an unknown reason as she waits for her chemotherapy to begin. I see another woman, again about my age, calmly eating her hamburger and chatting with her husband about everything mundane. I hear a woman who has been through way too much detailing all her medical ailments to her caregiver who listens attentively, although he must have heard all this a thousand times before. I see the man whose arms are covered with bandages from the half a dozen attempts it took to find a vein that wasn't fried from prior treatments. I chuckle at the attorney sitting right under the "no cell phone use in infusion room" sign arguing loudly on his phone over the terms of a settlement, and then repeating this at least six times while I am there.

I notice the staff, who has come to know each patient well, and knows just what to say to each person to entice a smile. I hear the patients as they support eachother, telling one another about what remedy has worked for them, or how much getting a port-a-cath has helped make their infusions better. I hear them give one another hope for a better drug, a better response, a better day. One tells me about lidocane spray so I don't feel it as much when they access my port. I am grateful.

I also see those who will not engage. Those who look as if they have already lost their battle and don't much care. I see one who is turned away from treatment because her white blood count is too low and she will not be able to withstand the drug. She is bitterly disappointed. These patients are the hardest to see.

No matter how good I am at convincing myself that I don't belong there, I have to accept that I do. As one friend put it, I am now a member of a sorority that I never pledged. It is important that I understand that my illness is no different than that of anyone in that room. In fact, there are really only two differences that I can perceive. First, I am newer to the journey than many of them. Second, I have faith and hope, and plenty of it. So many of them have lost both.

Although I will inevitably progress down the path of this disease and end up with war stories that they all have, I am determined that I WILL NOT lose faith or hope. I have much to hope for, after all! I plan to be the sunshine in that infusion room, the one with hope radiating from every pore, the one who put on her lipstick that day. Because hope is contagious, don't you think? And that's one disease I'd like to spread.

Back in the BarcaLounger

I am here in the infusion center, currently being observed after receiving my second treatment. Odd to have looked forward to something like this, I know, but I am thrilled to be dealing the cancer another blow.

If this cycle is anything like the last one, I can expect to sleep excessively for the next week to ten days and feel a bit like I have the flu. After that, I should feel a little better every day until I hit normal, about two weeks from today. Then, wait a week and start all over again. This will be my life for the next year or so, depending on how the cancer responds. And you know, it is a small price to pay for the possibility of getting my life back when it seemed not long ago there was little hope of this.

As I sit here I am struck once again by how fortunate I am in faith, marriage, family, friends,and doctors. When I have so much on my side, how can I lose?

Ironies

The good news: my appetite is back! For the first time in several months I have been interested in eating again. This tells me (although this thought is not supported by any actual science, mind you) that my liver must be doing better, as I have always assumed that the appetite loss was associated with decreased liver function.

The bad news: also back are four of the fifteen pounds I have lost since my diagnosis. Just goes to show that nothing is ever purely good or purely bad, right? I guess if I had to pick I'd rather be on the chubby side with a healthy liver than skinny with a cancerous one, so all is probably right with the world.

Now all I need is my self-perceptions of healing to be proven out with a scan. Another month and we'll know something for sure. I can't wait!

While I wait, I wanted to ask those of you who are praying for me to also pray for my friend Dawn who was diagnosed with breast cancer the day before I was. We did not know eachother well when we both embarked on this journey but we are becoming good friends quickly due to shared circumstances.

Dawn is only a few years older than me and has six children. She homeschools (which is how I met her, through the Catholic homeschooling group). She had a localized lump which they have already removed with a masectomy, and she began chemo yesterday to take care of any free floating cancerous cells that may have escaped.

The irony of the situation is that although, on paper, her diagnosis and prognosis is far better than mine, her treatment will likely be worse. Her cancer is not HER2 positive so she cannot take advantage of T-DM1 or even Herceptin. Instead, she will be receiving the standard chemo drugs that will likely cause her to feel quite ill and lose her hair.

She is very much in my thoughts and prayers right now so I thought I'd share a little about her since you are all such amazing prayer warriors. She could use some of that amazing support, so please remember her especially this week as she adjusts to her treatment.

Thanks, and Happy New Year! I have a feeling 2010 is going to be a really special year.

Rough Week

It took the dawning of a much brighter day today (odd, since it was raining) for me to realize how tough the last few days have been for me.

My mother was admitted to the hospital on Sunday with a severe kidney infection that resisted antibiotics for several days before succumbing. On Monday I thought she might not make it.

Happily, the infection broke and she was discharged this morning. I am relieved to have her home not only for her health's sake but also because she was in the hospital in Los Angeles which is about an hour's drive from me. It was a strain to have her so far away.

This marks another in a series of medical problems my mother has had lately and it is so very hard to watch her go through all of this. I am reminded often these days how fragile health is and how so many of us take it for granted when we have it.

Funny how I can handle my own medical issues better than I can watch someone I love go through them. I suppose this is happening so I can learn to understand what my family and friends are going through watching me struggle.

I am so very weary of doctors, hospitals, lab tests, imaging, waiting rooms and injections. How I long for the days when a visit to the doctor's office was a rare event not only for me but for anyone in my family.

Since it doesn't look like those days are coming back for me anytime soon, I must learn to find the good in the present situation. I think I can, I think I can... Actually, I KNOW I can, I KNOW I can.

Merry Christmas!

Well, this year for the first time in my adult life I did not send out Christmas cards, so this is our official family Christmas greeting. Merry, merry Christmas to all!

Thanks to Robin, my wonderful neighbor, who corralled the kids for this photo. If she hadn't, I fear there would be no annual photo at all. And I'm so glad there is!

This is particularly amusing to Jay and I, as it marks the second Christmas photo in a row where Bella had to be held up from the bottom to be in the photo. Every group picture we have of her shows her screaming. She does not like to conform, that's for sure.

At any rate, I hope you all have a blessed Christmas and amazingly wonderful New Year. I think 2010 is going to be a GREAT year!

T-DM1

If you are interested, check out this link that gives the best summary I've read of the T-DM1 drug I am currently taking.

Thanks, Donna, for sending this to me.

Keep in mind as you read this article that the results they are citing are for women who have had as many as seven different treatments fail before receiving this drug. For me this is a first-line treatment, so we can hope that the results will be even better.

How wonderful that companies and doctors are working together in an unprecedented way to reach and really help people with this. It gives me hope for humanity!

The Annunciation

As you may recall from my earlier post on the Agony in the Garden, I have been thinking of the mysteries of the rosary in a new light lately, by trying to place myself in the events that took place so long ago. (There is nothing like the diagnosis of a possibly terminal illness to jump start your prayer life, let me tell you!) At any rate, I thought I would share some of my reflections on the Annunciation from my new perspective on things.

Lately I have been thinking that many of my feelings following diagnosis must be similar to those that Mary had after the Angel Gabriel visited her to tell her that she would be the mother of the long-awaited Messiah.

When Mary first saw the Angel, she must have been afraid and apprehensive. How majestic and frightening must have been this glorious creature sent to communicate with her! She must have wondered with trepidation, "What is happening to me? Why am I here? Am I in trouble? This could be very bad!"

Although the creature sent to share my news with me was necessarily less glorious than the Angel Gabriel, she was every bit as majestic and frightening to me, because she held the answer to the rest of my life in the little manila folder in her hand. I stared at her with apprehension much the same way Mary must have stared at the angel Gabriel, and I can tell you that all the same questions were running through my head as well. "Why me? Is this really happening? I must be dreaming."

(Now, here the similarity briefly ends. While among the angel's first words to Mary were "Fear not, you have found favor with God," mine were more along the lines of "invasive carcinoma." Not the same thing, I assure you. But after this we get back on track...)

Mary must have been overwhelmed when the understanding came to her that she had been chosen by God among all others to bring forth Jesus. As a good Jewish girl, she knew what it meant that the Messiah was at last coming, and how amazing it must have been to her that she was THE ONE. Yet at the same time she must have been worried about what was ahead. The angel did not give her a lot of details, and there was much she had to be concerned about. She was, after all, engaged to be married and how was she going to explain this to her husband to be?! Not to mention the pressure that must go along with mothering the Savior of the World. Yet, she took a deep breath, trusted God, said 'yes'.

It didn't take long after my diagnosis to realize that I, too, had been chosen by God. This did not just happen. 38 year old, otherwise healthy women with no substantial family history of cancer do not wake up one day with stage IV cancer as I did. Especially ones who have birthed and nursed as many babies as I have, as each one reduces the risk of breast cancer. It took the perfect storm of events to allow this to grow so long undetected inside of me. No, indeed, this was not an accident. Nor do I believe that God is punishing me with this. So, there is only one conclusion left: this is a gift.

Crazy, you say? Many will think so, but I do not. I firmly believe that God gives us what we need to become better people and for some reason I needed this. This is an opportunity for me to learn charity from those around me, to smooth the rough edges of my pride and to come to appreciate what is really, truly important in life. God would not have picked me for this great trial if he did not think I could handle it and rise to the occasion. And I certainly intend to do so to the best of my ability. So, like Mary, 'my soul proclaims the greatness of the Lord, and my spirit rejoices in God my Savior; he has looked with favor on his lowly servant. The Almighty has done great things for me and holy is his name.'

Also like Mary, I do not have many details about the future. I have things that concern me and much uncertainty. I did not have an angel to tell me to fear not as Mary did, but I do have wonderful priests in my life who have told me again and again, both directly and through homilies to never, ever be afraid. And I am not. I hear God speaking through them and I am listening.

I did not have the opportunity to say "yes" to this cancer, and I can't honestly say that I would have had the strength to do so if asked. However, now that it is mine, I embrace all that I have to learn from it. Behold the handmaid of the Lord.

More Sobbing

Once again, tears of joy and gratitude were falling from my suddenly oft-wet face yesterday. This time, however, they were not in public.

Instead, these tears were shed in the privacy of my own room, when I took note of just how much my primary breast tumor has shrunk in only a week. It is absolutely incredible and if I could not feel it myself I would not believe it.

Mind you, there is still a pretty big tumor in there. But just seven days ago there was no evidence of pliable or healthy tissue at all. Now, there is what seems to be quite a bit of soft, healthy tissue with a distinct lump in the middle. Everything is different, and I almost cannot believe it is true.

My doctor told me I should expect to find a noticeable change in the first week; but this much I did not expect. He also said it would be a good barometer for what was going on in the liver and bones as well, so I am so very hopeful.

Perhaps one of these days I will stop blubbering (and sleeping) long enough to post on another topic, but for now thanks for bearing with me through what is sure to become known as my "cancer period". It is too easy to develop a one-track mind when something like this is going on your life. I appreciate your continued readership!

Can't Stay Awake

After an initial hurrah over my mild side effects, I have since taken to bed and can hardly get up.

Today, for instance, I got up at 6:30, went to mass, loaded the dishwasher, hit my bed again by 10am and have not removed myself since. I have been sleeping, and sleeping, and sleeping some more. I did not know anyone could sleep this much, especially me who rarely even sits.

Last night I drove myself to mass (I definitely have a much-needed mass theme going on) and then fell asleep in the parking lot, taking a good 20 minute snooze before I could muster the energy to walk across the street and into the church. I feel like a narcoleptic!

Nothing serious here, folks. This could be way worse, I know. But as soon as I sit up I feel weak, nauseous and head-achy, all of which disappears when I sleep. Therefore, sleep is my good friend.

I, who LOVE to eat, is forcing myself on doctors orders to put down three square meals. This may be the strangest part of all, as generous people are filling my kitchen with food that looks so good. Normally, I would be ALL OVER this! Luckily the 8 others in the family are, and I am so grateful to not be thinking of what to feed them right now.

As I sleep, I imagine the cancer killing going on inside me and, believe me, my dreams are sweet as a result.

Quote of the Day

Well, I did end up having a few side effects to the treatment, but nothing too horrible. On the drive home I felt like I had come down with the flu...chills (I could not get the car warm enough to Jennifer's dismay), aches and some nausea. By the time I got home I was feeling pretty poorly and went straight to bed. But it really did seem like a standard flu and nothing worse.

This morning when I woke up I felt as if I had been in a minor traffic collision. Everything hurt, even my cheekbones. But when I got up and started moving around I began to feel pretty normal. Aside from being generally quite tired and a little run down, I feel actually quite well. I am pleasantly surprised.

I even felt well enough to give Sam some lessons this morning (he, by the way, is going back to school in January, but I am closing things out to the best of my ability before then). It was during a poetry lesson that he left me in stitches.

Me: We are going to practice using some metaphors and similies. I am going to give you a phrase and you complete it. Ready? 'The girl was as mad as...'

(I am thinking to myself that the word hornet would complete this phrase well.)

Sam: (after a moment's thought) Eight monkeys with seven bananas.

What a joy it has been to spend these months homeschooling this clever, funny, smart boy. I am going to miss him.

So Far So Good

The cancer killing has officially begun. I am sitting here in my infusion room BarcaLounger with all of today's medicine coursing through my veins. Hopefully, at this very minute the T-DM1 miracle drug is chasing down cancer cells, entering them through their little HER2 receptors and imploding them violently from within their very own nuclei. I am really enjoying this imagery.

So far I feel pretty normal. No nausea, vitals are all good. And I should know, as they are checking them every 15 minutes! Right now I am in the 90 minute post treatment observation period so I am basically just sitting here with Jennifer, laughing, reading and snoozing a bit. They even have snacks and hot tea, so it's almost like I'm in the Red Carpet club here. Destination unknown.

I have really lucked out with this study drug, even more than I knew. What I am receiving, I learned today, isn't even really chemotherapy. The drug I am receiving is technically an antibody, which means I don't need any of the steroids, anti nausea meds or Prilosec that normally comes in concert with standard chemotherapy. As an added bonus, I don't have to come back the day after each treatment to receive the often-painful white blood cell stimulating injection I was dreading. If this new drug is as effective as my doctor believes it to be and it is as easy as all this, I'm thinking that I should really buy myself some Genentech stock.

On another note entirely, my treatment nurse is wearing a scapular. I consider this to be an excellent sign.

I am sure fatigue is on the way as this battle rages on within me, but at this moment all I am feeling is relief and profound gratitude.

Treatment Day

I didn't sleep too well last night. As it turns out, it is a lot easier to think cheerfully of chemotherapy in the abstract than it is to actually face it.

But don't get me wrong: I am not terrified or morose. I am just a bit apprehensive. I don't know what level of side effects to expect and this scares me a bit...fear of the unknown and all. Plus, there is the lurking concern that this treatment won't work. But I won't know that for nine weeks, so no sense in worrying about that now.

So, let's focus on the positive: today the cancer that has been happily growing in my body is going to have a very bad day. And I don't expect tomorrow or the next day will be much better for it. So, HA!

Let the games begin.

I Guess I Shouldn't Have Been Surprised

When I picked up the kids from school yesterday, I enthusiastically shared my news of the clinical trial and the new drug. As I drove, I explained how lucky I was to be in the trial and how promising the treatment was. They were definitely happy for me, I think mostly because they could see how happy I was about it all.

I was going along, outlining all the good things that this meant for us when I came to one of the best parts: that I wasn't going to lose my hair after all. I paused and waited for them all to join me in what I was sure would be a unanimous cheer.

Well, it was unanimous, alright, but it was not a cheer. Instead, it was a groan. With a few "awwwws!" thrown in.

I looked at them in total surprise and quickly learned that they were all actually looking forward to my bald head and had been deciding on my behalf exactly what was to be tattooed on it.

Apparently I have ruined the only fun they saw in this whole cancer thing.

(Sorry, guys.)

Prayers Answered

I have been officially accepted into the clinical trial (thank you, Genentech).

I have been randomized into Arm A of the trial, which means I get the very potent and promising trial drug (thank you, prayer warriors).

I have my first treatment on Monday (thank you, God).

I get to keep my hair (I don't really know who to thank for this one but I am certainly grateful).

I received the call from the study nurse letting me know all of this while standing in the toothpaste aisle at Target. When I hung up I couldn't help but cry, as I was so overwhelmed by gratitude. My dear friend Jennifer held me up and wisely reminded me, when I expressed concern about how I was embarassing myself in public, that there really wasn't that much remarkable about a grown woman sobbing into a Listerine display in the Palmdale Target. Point taken.

Yes, it is a good day. I have NO DOUBT that this fantastic news is a direct result of all the prayers being said on my behalf. I am filled with hope and the certainty that God is listening. Thank you so very much.

A Golden Ticket

Do you remember in Charlie and the Chocolate Factory when Charlie unwrapped his Wonka Bar and found the Golden Ticket when he wasn't expecting it? This is what happened to me on Thursday when my oncologist called me unexpectedly to tell me he had obtained a slot for me in a small and very sought after clinical trial of a new drug for Her2 positive metastatic breast cancer.

Specifically, the trial is for women who have not already been treated with other chemotherapy, so I am extra fortunate this slot came up when it did, as I was supposed to start my standard treatment tomorrow. Instead, I found myself running back and forth to Los Angeles at the end of the week getting myself enrolled, and completing all the extra tests required for the sponsor. I don't think there is a single part of my body that has not been scanned, poked or processed in some way. They should definitely have a pretty clear picture by now of what things look like.

Now, I don't much about biochemistry or genes or cancer cell receptors, but I do know this: my rather even-keeled, realist of an oncologist, who is one of the eight UCLA oncologists on this trial, showed excitement that I have not yet seen and spoke of the high hopes that this new drug is giving. Further, the research doctor who came in to explain the medication and trial to me said straight out that if anything was going to CURE my cancer, this was. Two weeks ago I was told there was no hope for a cure, and hope is such a beautiful thing.

This new drug, as my feeble understanding allows, chemically binds the two standard drugs given to patients in my situation: Herceptin and Taxotere. Herceptin is a very targeted therapy that only finds and destroys Her2 positive cancer cells. Taxotere is a general chemotherapy drug, found to be quite effective when combined with the targeted Herceptin at treating my kind of cancer. However, being a more general drug, Taxotere interferes with healthy cells as well, which is why you lose your hair when being treated with it.

Apparently, when you bind these two drugs together, the result is an extremely potent, very targeted cancer killing machine. Being as targeted as it is, it is my understanding that I will not lose my hair if given this drug instead of the standard treatment. At this point, believe me, losing my hair is far from my greatest concern, but, hey, if I can keep it that's great news!

You may notice that I used the word "if" above. IF I get this new drug. Being that this is a clinical trial, there must be a control group. 50% of people enrolled in this study will receive the new drug and 50% will receive the standard treatment of Herceptin and Taxotere that I was scheduled to begin receiving tomorrow before the trial came up. Of course, it is my great hope that I will be computer randomized into the test group as opposed to the control. However, if I am placed in the control group and do not respond well to standard treatment, my doctor can switch me to the new drug since I am a trial participant. For this reason, we have come to view this trial as my golden ticket, as I will have access to this drug if I need it simply by having lucked into a slot.

To give you an idea of the scope of this and just how fortunate I am to be a part of this, here are some statistics for you: There are 120 people in this trial at 25 centers around the world. There are only 10 enrolled at UCLA, where there are 8 doctors and a full time study nurse following the 10 of us. Regardless of which group I end up in, my case will be scrutinized as if I were a bug under a microscope. In this case, scrutiny is a very good thing.

Just having a study nurse assigned to me is a blessing in and of itself. She is in constant contact with me, letting me know what is happening, what I need to do, and what my test results are looking like. Again, a very good thing.

So, pending my final acceptance in the study, which should come tomorrow, I will begin treatment next Monday the 14th. I truly can't wait to get this started. I am ready!

Update

It has been a wild ride this week on our medical roller coaster.

As I type, I am in the waiting room of the surgical center where, in about an hour, they will insert a device called a portacath into my chest. This is a semi-permanent catheter that resides under the skin and allows for easier administration of the chemotherapy drugs.

On another note, I have been offered a spot in a clinical trial of a new, powerful drug for Her2 positive metastatic breast cancer. This is huge for me and exactly what my hope had been in choosing UCLA for my treatment.

It looks like they are ready for me, so I will post more on this later!

Happy Birthday, Natalie!

She loved her cake. She loved her gifts. She loved it when we sang Happy Birthday. How typical of this delightful, happy child who is so easy to please!

Natalie, I cannot believe it was only a year ago that we welcomed you into the world, as it now seems a lifetime ago. You were absolutely meant to be in our family and the world is a better place because you are here, beautiful daughter!

Natalie received the best gift of all from her doctor yesterday...official release from her hip abduction brace! Her hip angles, while still not perfectly proportional, are below threshold levels for treatment, so she is free at last. Her doctor will check her in a year, then in two years to be sure things are correcting on their own, which they often do from this point on. We are cautiously optimistic that her treatment is over and delighted that she is now free to begin walking and continue crawling unfettered.

Happy birthday, Natalie Lucia. Your name literally means "light of Christmas", but please know that for us you light up the rest of the year as well.