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.
Sunday, February 28, 2010
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.
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!
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.
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!
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!
(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.
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
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.
Sunday, January 31, 2010
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.
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.
Thursday, January 28, 2010
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.)
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.)
Monday, January 25, 2010
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!
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!
Sunday, January 24, 2010
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!
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!
Thursday, January 21, 2010
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.
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.
Tuesday, January 19, 2010
Happy Birthday, Lindsey!
.bmp)
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.
Saturday, January 16, 2010
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.
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!
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!
Wednesday, January 13, 2010
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.
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.
Friday, January 08, 2010
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.
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.
Subscribe to:
Posts (Atom)