Sunday, February 28, 2010

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.

Monday, February 22, 2010

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!

Thursday, February 18, 2010

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.

Wednesday, February 17, 2010

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...

Tuesday, February 16, 2010

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!

Monday, February 15, 2010

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.

Thursday, February 11, 2010

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!

Monday, February 08, 2010

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!

Wednesday, February 03, 2010

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.

Monday, February 01, 2010

Quite Proud of Herself

video

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.