It took the dawning of a much brighter day today (odd, since it was raining) for me to realize how tough the last few days have been for me.
My mother was admitted to the hospital on Sunday with a severe kidney infection that resisted antibiotics for several days before succumbing. On Monday I thought she might not make it.
Happily, the infection broke and she was discharged this morning. I am relieved to have her home not only for her health's sake but also because she was in the hospital in Los Angeles which is about an hour's drive from me. It was a strain to have her so far away.
This marks another in a series of medical problems my mother has had lately and it is so very hard to watch her go through all of this. I am reminded often these days how fragile health is and how so many of us take it for granted when we have it.
Funny how I can handle my own medical issues better than I can watch someone I love go through them. I suppose this is happening so I can learn to understand what my family and friends are going through watching me struggle.
I am so very weary of doctors, hospitals, lab tests, imaging, waiting rooms and injections. How I long for the days when a visit to the doctor's office was a rare event not only for me but for anyone in my family.
Since it doesn't look like those days are coming back for me anytime soon, I must learn to find the good in the present situation. I think I can, I think I can... Actually, I KNOW I can, I KNOW I can.
Wednesday, December 30, 2009
Friday, December 25, 2009
Merry Christmas!
Well, this year for the first time in my adult life I did not send out Christmas cards, so this is our official family Christmas greeting. Merry, merry Christmas to all!
Thanks to Robin, my wonderful neighbor, who corralled the kids for this photo. If she hadn't, I fear there would be no annual photo at all. And I'm so glad there is!
This is particularly amusing to Jay and I, as it marks the second Christmas photo in a row where Bella had to be held up from the bottom to be in the photo. Every group picture we have of her shows her screaming. She does not like to conform, that's for sure.
At any rate, I hope you all have a blessed Christmas and amazingly wonderful New Year. I think 2010 is going to be a GREAT year!
Thursday, December 24, 2009
T-DM1
If you are interested, check out this link that gives the best summary I've read of the T-DM1 drug I am currently taking.
Thanks, Donna, for sending this to me.
Keep in mind as you read this article that the results they are citing are for women who have had as many as seven different treatments fail before receiving this drug. For me this is a first-line treatment, so we can hope that the results will be even better.
How wonderful that companies and doctors are working together in an unprecedented way to reach and really help people with this. It gives me hope for humanity!
Thanks, Donna, for sending this to me.
Keep in mind as you read this article that the results they are citing are for women who have had as many as seven different treatments fail before receiving this drug. For me this is a first-line treatment, so we can hope that the results will be even better.
How wonderful that companies and doctors are working together in an unprecedented way to reach and really help people with this. It gives me hope for humanity!
Tuesday, December 22, 2009
The Annunciation
As you may recall from my earlier post on the Agony in the Garden, I have been thinking of the mysteries of the rosary in a new light lately, by trying to place myself in the events that took place so long ago. (There is nothing like the diagnosis of a possibly terminal illness to jump start your prayer life, let me tell you!) At any rate, I thought I would share some of my reflections on the Annunciation from my new perspective on things.
Lately I have been thinking that many of my feelings following diagnosis must be similar to those that Mary had after the Angel Gabriel visited her to tell her that she would be the mother of the long-awaited Messiah.
When Mary first saw the Angel, she must have been afraid and apprehensive. How majestic and frightening must have been this glorious creature sent to communicate with her! She must have wondered with trepidation, "What is happening to me? Why am I here? Am I in trouble? This could be very bad!"
Although the creature sent to share my news with me was necessarily less glorious than the Angel Gabriel, she was every bit as majestic and frightening to me, because she held the answer to the rest of my life in the little manila folder in her hand. I stared at her with apprehension much the same way Mary must have stared at the angel Gabriel, and I can tell you that all the same questions were running through my head as well. "Why me? Is this really happening? I must be dreaming."
(Now, here the similarity briefly ends. While among the angel's first words to Mary were "Fear not, you have found favor with God," mine were more along the lines of "invasive carcinoma." Not the same thing, I assure you. But after this we get back on track...)
Mary must have been overwhelmed when the understanding came to her that she had been chosen by God among all others to bring forth Jesus. As a good Jewish girl, she knew what it meant that the Messiah was at last coming, and how amazing it must have been to her that she was THE ONE. Yet at the same time she must have been worried about what was ahead. The angel did not give her a lot of details, and there was much she had to be concerned about. She was, after all, engaged to be married and how was she going to explain this to her husband to be?! Not to mention the pressure that must go along with mothering the Savior of the World. Yet, she took a deep breath, trusted God, said 'yes'.
It didn't take long after my diagnosis to realize that I, too, had been chosen by God. This did not just happen. 38 year old, otherwise healthy women with no substantial family history of cancer do not wake up one day with stage IV cancer as I did. Especially ones who have birthed and nursed as many babies as I have, as each one reduces the risk of breast cancer. It took the perfect storm of events to allow this to grow so long undetected inside of me. No, indeed, this was not an accident. Nor do I believe that God is punishing me with this. So, there is only one conclusion left: this is a gift.
Crazy, you say? Many will think so, but I do not. I firmly believe that God gives us what we need to become better people and for some reason I needed this. This is an opportunity for me to learn charity from those around me, to smooth the rough edges of my pride and to come to appreciate what is really, truly important in life. God would not have picked me for this great trial if he did not think I could handle it and rise to the occasion. And I certainly intend to do so to the best of my ability. So, like Mary, 'my soul proclaims the greatness of the Lord, and my spirit rejoices in God my Savior; he has looked with favor on his lowly servant. The Almighty has done great things for me and holy is his name.'
Also like Mary, I do not have many details about the future. I have things that concern me and much uncertainty. I did not have an angel to tell me to fear not as Mary did, but I do have wonderful priests in my life who have told me again and again, both directly and through homilies to never, ever be afraid. And I am not. I hear God speaking through them and I am listening.
I did not have the opportunity to say "yes" to this cancer, and I can't honestly say that I would have had the strength to do so if asked. However, now that it is mine, I embrace all that I have to learn from it. Behold the handmaid of the Lord.
Lately I have been thinking that many of my feelings following diagnosis must be similar to those that Mary had after the Angel Gabriel visited her to tell her that she would be the mother of the long-awaited Messiah.
When Mary first saw the Angel, she must have been afraid and apprehensive. How majestic and frightening must have been this glorious creature sent to communicate with her! She must have wondered with trepidation, "What is happening to me? Why am I here? Am I in trouble? This could be very bad!"
Although the creature sent to share my news with me was necessarily less glorious than the Angel Gabriel, she was every bit as majestic and frightening to me, because she held the answer to the rest of my life in the little manila folder in her hand. I stared at her with apprehension much the same way Mary must have stared at the angel Gabriel, and I can tell you that all the same questions were running through my head as well. "Why me? Is this really happening? I must be dreaming."
(Now, here the similarity briefly ends. While among the angel's first words to Mary were "Fear not, you have found favor with God," mine were more along the lines of "invasive carcinoma." Not the same thing, I assure you. But after this we get back on track...)
Mary must have been overwhelmed when the understanding came to her that she had been chosen by God among all others to bring forth Jesus. As a good Jewish girl, she knew what it meant that the Messiah was at last coming, and how amazing it must have been to her that she was THE ONE. Yet at the same time she must have been worried about what was ahead. The angel did not give her a lot of details, and there was much she had to be concerned about. She was, after all, engaged to be married and how was she going to explain this to her husband to be?! Not to mention the pressure that must go along with mothering the Savior of the World. Yet, she took a deep breath, trusted God, said 'yes'.
It didn't take long after my diagnosis to realize that I, too, had been chosen by God. This did not just happen. 38 year old, otherwise healthy women with no substantial family history of cancer do not wake up one day with stage IV cancer as I did. Especially ones who have birthed and nursed as many babies as I have, as each one reduces the risk of breast cancer. It took the perfect storm of events to allow this to grow so long undetected inside of me. No, indeed, this was not an accident. Nor do I believe that God is punishing me with this. So, there is only one conclusion left: this is a gift.
Crazy, you say? Many will think so, but I do not. I firmly believe that God gives us what we need to become better people and for some reason I needed this. This is an opportunity for me to learn charity from those around me, to smooth the rough edges of my pride and to come to appreciate what is really, truly important in life. God would not have picked me for this great trial if he did not think I could handle it and rise to the occasion. And I certainly intend to do so to the best of my ability. So, like Mary, 'my soul proclaims the greatness of the Lord, and my spirit rejoices in God my Savior; he has looked with favor on his lowly servant. The Almighty has done great things for me and holy is his name.'
Also like Mary, I do not have many details about the future. I have things that concern me and much uncertainty. I did not have an angel to tell me to fear not as Mary did, but I do have wonderful priests in my life who have told me again and again, both directly and through homilies to never, ever be afraid. And I am not. I hear God speaking through them and I am listening.
I did not have the opportunity to say "yes" to this cancer, and I can't honestly say that I would have had the strength to do so if asked. However, now that it is mine, I embrace all that I have to learn from it. Behold the handmaid of the Lord.
Monday, December 21, 2009
More Sobbing
Once again, tears of joy and gratitude were falling from my suddenly oft-wet face yesterday. This time, however, they were not in public.
Instead, these tears were shed in the privacy of my own room, when I took note of just how much my primary breast tumor has shrunk in only a week. It is absolutely incredible and if I could not feel it myself I would not believe it.
Mind you, there is still a pretty big tumor in there. But just seven days ago there was no evidence of pliable or healthy tissue at all. Now, there is what seems to be quite a bit of soft, healthy tissue with a distinct lump in the middle. Everything is different, and I almost cannot believe it is true.
My doctor told me I should expect to find a noticeable change in the first week; but this much I did not expect. He also said it would be a good barometer for what was going on in the liver and bones as well, so I am so very hopeful.
Perhaps one of these days I will stop blubbering (and sleeping) long enough to post on another topic, but for now thanks for bearing with me through what is sure to become known as my "cancer period". It is too easy to develop a one-track mind when something like this is going on your life. I appreciate your continued readership!
Instead, these tears were shed in the privacy of my own room, when I took note of just how much my primary breast tumor has shrunk in only a week. It is absolutely incredible and if I could not feel it myself I would not believe it.
Mind you, there is still a pretty big tumor in there. But just seven days ago there was no evidence of pliable or healthy tissue at all. Now, there is what seems to be quite a bit of soft, healthy tissue with a distinct lump in the middle. Everything is different, and I almost cannot believe it is true.
My doctor told me I should expect to find a noticeable change in the first week; but this much I did not expect. He also said it would be a good barometer for what was going on in the liver and bones as well, so I am so very hopeful.
Perhaps one of these days I will stop blubbering (and sleeping) long enough to post on another topic, but for now thanks for bearing with me through what is sure to become known as my "cancer period". It is too easy to develop a one-track mind when something like this is going on your life. I appreciate your continued readership!
Thursday, December 17, 2009
Can't Stay Awake
After an initial hurrah over my mild side effects, I have since taken to bed and can hardly get up.
Today, for instance, I got up at 6:30, went to mass, loaded the dishwasher, hit my bed again by 10am and have not removed myself since. I have been sleeping, and sleeping, and sleeping some more. I did not know anyone could sleep this much, especially me who rarely even sits.
Last night I drove myself to mass (I definitely have a much-needed mass theme going on) and then fell asleep in the parking lot, taking a good 20 minute snooze before I could muster the energy to walk across the street and into the church. I feel like a narcoleptic!
Nothing serious here, folks. This could be way worse, I know. But as soon as I sit up I feel weak, nauseous and head-achy, all of which disappears when I sleep. Therefore, sleep is my good friend.
I, who LOVE to eat, is forcing myself on doctors orders to put down three square meals. This may be the strangest part of all, as generous people are filling my kitchen with food that looks so good. Normally, I would be ALL OVER this! Luckily the 8 others in the family are, and I am so grateful to not be thinking of what to feed them right now.
As I sleep, I imagine the cancer killing going on inside me and, believe me, my dreams are sweet as a result.
Today, for instance, I got up at 6:30, went to mass, loaded the dishwasher, hit my bed again by 10am and have not removed myself since. I have been sleeping, and sleeping, and sleeping some more. I did not know anyone could sleep this much, especially me who rarely even sits.
Last night I drove myself to mass (I definitely have a much-needed mass theme going on) and then fell asleep in the parking lot, taking a good 20 minute snooze before I could muster the energy to walk across the street and into the church. I feel like a narcoleptic!
Nothing serious here, folks. This could be way worse, I know. But as soon as I sit up I feel weak, nauseous and head-achy, all of which disappears when I sleep. Therefore, sleep is my good friend.
I, who LOVE to eat, is forcing myself on doctors orders to put down three square meals. This may be the strangest part of all, as generous people are filling my kitchen with food that looks so good. Normally, I would be ALL OVER this! Luckily the 8 others in the family are, and I am so grateful to not be thinking of what to feed them right now.
As I sleep, I imagine the cancer killing going on inside me and, believe me, my dreams are sweet as a result.
Tuesday, December 15, 2009
Quote of the Day
Well, I did end up having a few side effects to the treatment, but nothing too horrible. On the drive home I felt like I had come down with the flu...chills (I could not get the car warm enough to Jennifer's dismay), aches and some nausea. By the time I got home I was feeling pretty poorly and went straight to bed. But it really did seem like a standard flu and nothing worse.
This morning when I woke up I felt as if I had been in a minor traffic collision. Everything hurt, even my cheekbones. But when I got up and started moving around I began to feel pretty normal. Aside from being generally quite tired and a little run down, I feel actually quite well. I am pleasantly surprised.
I even felt well enough to give Sam some lessons this morning (he, by the way, is going back to school in January, but I am closing things out to the best of my ability before then). It was during a poetry lesson that he left me in stitches.
Me: We are going to practice using some metaphors and similies. I am going to give you a phrase and you complete it. Ready? 'The girl was as mad as...'
(I am thinking to myself that the word hornet would complete this phrase well.)
Sam: (after a moment's thought) Eight monkeys with seven bananas.
What a joy it has been to spend these months homeschooling this clever, funny, smart boy. I am going to miss him.
This morning when I woke up I felt as if I had been in a minor traffic collision. Everything hurt, even my cheekbones. But when I got up and started moving around I began to feel pretty normal. Aside from being generally quite tired and a little run down, I feel actually quite well. I am pleasantly surprised.
I even felt well enough to give Sam some lessons this morning (he, by the way, is going back to school in January, but I am closing things out to the best of my ability before then). It was during a poetry lesson that he left me in stitches.
Me: We are going to practice using some metaphors and similies. I am going to give you a phrase and you complete it. Ready? 'The girl was as mad as...'
(I am thinking to myself that the word hornet would complete this phrase well.)
Sam: (after a moment's thought) Eight monkeys with seven bananas.
What a joy it has been to spend these months homeschooling this clever, funny, smart boy. I am going to miss him.
Monday, December 14, 2009
So Far So Good
The cancer killing has officially begun. I am sitting here in my infusion room BarcaLounger with all of today's medicine coursing through my veins. Hopefully, at this very minute the T-DM1 miracle drug is chasing down cancer cells, entering them through their little HER2 receptors and imploding them violently from within their very own nuclei. I am really enjoying this imagery.
So far I feel pretty normal. No nausea, vitals are all good. And I should know, as they are checking them every 15 minutes! Right now I am in the 90 minute post treatment observation period so I am basically just sitting here with Jennifer, laughing, reading and snoozing a bit. They even have snacks and hot tea, so it's almost like I'm in the Red Carpet club here. Destination unknown.
I have really lucked out with this study drug, even more than I knew. What I am receiving, I learned today, isn't even really chemotherapy. The drug I am receiving is technically an antibody, which means I don't need any of the steroids, anti nausea meds or Prilosec that normally comes in concert with standard chemotherapy. As an added bonus, I don't have to come back the day after each treatment to receive the often-painful white blood cell stimulating injection I was dreading. If this new drug is as effective as my doctor believes it to be and it is as easy as all this, I'm thinking that I should really buy myself some Genentech stock.
On another note entirely, my treatment nurse is wearing a scapular. I consider this to be an excellent sign.
I am sure fatigue is on the way as this battle rages on within me, but at this moment all I am feeling is relief and profound gratitude.
So far I feel pretty normal. No nausea, vitals are all good. And I should know, as they are checking them every 15 minutes! Right now I am in the 90 minute post treatment observation period so I am basically just sitting here with Jennifer, laughing, reading and snoozing a bit. They even have snacks and hot tea, so it's almost like I'm in the Red Carpet club here. Destination unknown.
I have really lucked out with this study drug, even more than I knew. What I am receiving, I learned today, isn't even really chemotherapy. The drug I am receiving is technically an antibody, which means I don't need any of the steroids, anti nausea meds or Prilosec that normally comes in concert with standard chemotherapy. As an added bonus, I don't have to come back the day after each treatment to receive the often-painful white blood cell stimulating injection I was dreading. If this new drug is as effective as my doctor believes it to be and it is as easy as all this, I'm thinking that I should really buy myself some Genentech stock.
On another note entirely, my treatment nurse is wearing a scapular. I consider this to be an excellent sign.
I am sure fatigue is on the way as this battle rages on within me, but at this moment all I am feeling is relief and profound gratitude.
Treatment Day
I didn't sleep too well last night. As it turns out, it is a lot easier to think cheerfully of chemotherapy in the abstract than it is to actually face it.
But don't get me wrong: I am not terrified or morose. I am just a bit apprehensive. I don't know what level of side effects to expect and this scares me a bit...fear of the unknown and all. Plus, there is the lurking concern that this treatment won't work. But I won't know that for nine weeks, so no sense in worrying about that now.
So, let's focus on the positive: today the cancer that has been happily growing in my body is going to have a very bad day. And I don't expect tomorrow or the next day will be much better for it. So, HA!
Let the games begin.
But don't get me wrong: I am not terrified or morose. I am just a bit apprehensive. I don't know what level of side effects to expect and this scares me a bit...fear of the unknown and all. Plus, there is the lurking concern that this treatment won't work. But I won't know that for nine weeks, so no sense in worrying about that now.
So, let's focus on the positive: today the cancer that has been happily growing in my body is going to have a very bad day. And I don't expect tomorrow or the next day will be much better for it. So, HA!
Let the games begin.
Wednesday, December 09, 2009
I Guess I Shouldn't Have Been Surprised
When I picked up the kids from school yesterday, I enthusiastically shared my news of the clinical trial and the new drug. As I drove, I explained how lucky I was to be in the trial and how promising the treatment was. They were definitely happy for me, I think mostly because they could see how happy I was about it all.
I was going along, outlining all the good things that this meant for us when I came to one of the best parts: that I wasn't going to lose my hair after all. I paused and waited for them all to join me in what I was sure would be a unanimous cheer.
Well, it was unanimous, alright, but it was not a cheer. Instead, it was a groan. With a few "awwwws!" thrown in.
I looked at them in total surprise and quickly learned that they were all actually looking forward to my bald head and had been deciding on my behalf exactly what was to be tattooed on it.
Apparently I have ruined the only fun they saw in this whole cancer thing.
(Sorry, guys.)
I was going along, outlining all the good things that this meant for us when I came to one of the best parts: that I wasn't going to lose my hair after all. I paused and waited for them all to join me in what I was sure would be a unanimous cheer.
Well, it was unanimous, alright, but it was not a cheer. Instead, it was a groan. With a few "awwwws!" thrown in.
I looked at them in total surprise and quickly learned that they were all actually looking forward to my bald head and had been deciding on my behalf exactly what was to be tattooed on it.
Apparently I have ruined the only fun they saw in this whole cancer thing.
(Sorry, guys.)
Tuesday, December 08, 2009
Prayers Answered
I have been officially accepted into the clinical trial (thank you, Genentech).
I have been randomized into Arm A of the trial, which means I get the very potent and promising trial drug (thank you, prayer warriors).
I have my first treatment on Monday (thank you, God).
I get to keep my hair (I don't really know who to thank for this one but I am certainly grateful).
I received the call from the study nurse letting me know all of this while standing in the toothpaste aisle at Target. When I hung up I couldn't help but cry, as I was so overwhelmed by gratitude. My dear friend Jennifer held me up and wisely reminded me, when I expressed concern about how I was embarassing myself in public, that there really wasn't that much remarkable about a grown woman sobbing into a Listerine display in the Palmdale Target. Point taken.
Yes, it is a good day. I have NO DOUBT that this fantastic news is a direct result of all the prayers being said on my behalf. I am filled with hope and the certainty that God is listening. Thank you so very much.
I have been randomized into Arm A of the trial, which means I get the very potent and promising trial drug (thank you, prayer warriors).
I have my first treatment on Monday (thank you, God).
I get to keep my hair (I don't really know who to thank for this one but I am certainly grateful).
I received the call from the study nurse letting me know all of this while standing in the toothpaste aisle at Target. When I hung up I couldn't help but cry, as I was so overwhelmed by gratitude. My dear friend Jennifer held me up and wisely reminded me, when I expressed concern about how I was embarassing myself in public, that there really wasn't that much remarkable about a grown woman sobbing into a Listerine display in the Palmdale Target. Point taken.
Yes, it is a good day. I have NO DOUBT that this fantastic news is a direct result of all the prayers being said on my behalf. I am filled with hope and the certainty that God is listening. Thank you so very much.
Sunday, December 06, 2009
A Golden Ticket
Do you remember in Charlie and the Chocolate Factory when Charlie unwrapped his Wonka Bar and found the Golden Ticket when he wasn't expecting it? This is what happened to me on Thursday when my oncologist called me unexpectedly to tell me he had obtained a slot for me in a small and very sought after clinical trial of a new drug for Her2 positive metastatic breast cancer.
Specifically, the trial is for women who have not already been treated with other chemotherapy, so I am extra fortunate this slot came up when it did, as I was supposed to start my standard treatment tomorrow. Instead, I found myself running back and forth to Los Angeles at the end of the week getting myself enrolled, and completing all the extra tests required for the sponsor. I don't think there is a single part of my body that has not been scanned, poked or processed in some way. They should definitely have a pretty clear picture by now of what things look like.
Now, I don't much about biochemistry or genes or cancer cell receptors, but I do know this: my rather even-keeled, realist of an oncologist, who is one of the eight UCLA oncologists on this trial, showed excitement that I have not yet seen and spoke of the high hopes that this new drug is giving. Further, the research doctor who came in to explain the medication and trial to me said straight out that if anything was going to CURE my cancer, this was. Two weeks ago I was told there was no hope for a cure, and hope is such a beautiful thing.
This new drug, as my feeble understanding allows, chemically binds the two standard drugs given to patients in my situation: Herceptin and Taxotere. Herceptin is a very targeted therapy that only finds and destroys Her2 positive cancer cells. Taxotere is a general chemotherapy drug, found to be quite effective when combined with the targeted Herceptin at treating my kind of cancer. However, being a more general drug, Taxotere interferes with healthy cells as well, which is why you lose your hair when being treated with it.
Apparently, when you bind these two drugs together, the result is an extremely potent, very targeted cancer killing machine. Being as targeted as it is, it is my understanding that I will not lose my hair if given this drug instead of the standard treatment. At this point, believe me, losing my hair is far from my greatest concern, but, hey, if I can keep it that's great news!
You may notice that I used the word "if" above. IF I get this new drug. Being that this is a clinical trial, there must be a control group. 50% of people enrolled in this study will receive the new drug and 50% will receive the standard treatment of Herceptin and Taxotere that I was scheduled to begin receiving tomorrow before the trial came up. Of course, it is my great hope that I will be computer randomized into the test group as opposed to the control. However, if I am placed in the control group and do not respond well to standard treatment, my doctor can switch me to the new drug since I am a trial participant. For this reason, we have come to view this trial as my golden ticket, as I will have access to this drug if I need it simply by having lucked into a slot.
To give you an idea of the scope of this and just how fortunate I am to be a part of this, here are some statistics for you: There are 120 people in this trial at 25 centers around the world. There are only 10 enrolled at UCLA, where there are 8 doctors and a full time study nurse following the 10 of us. Regardless of which group I end up in, my case will be scrutinized as if I were a bug under a microscope. In this case, scrutiny is a very good thing.
Just having a study nurse assigned to me is a blessing in and of itself. She is in constant contact with me, letting me know what is happening, what I need to do, and what my test results are looking like. Again, a very good thing.
So, pending my final acceptance in the study, which should come tomorrow, I will begin treatment next Monday the 14th. I truly can't wait to get this started. I am ready!
Specifically, the trial is for women who have not already been treated with other chemotherapy, so I am extra fortunate this slot came up when it did, as I was supposed to start my standard treatment tomorrow. Instead, I found myself running back and forth to Los Angeles at the end of the week getting myself enrolled, and completing all the extra tests required for the sponsor. I don't think there is a single part of my body that has not been scanned, poked or processed in some way. They should definitely have a pretty clear picture by now of what things look like.
Now, I don't much about biochemistry or genes or cancer cell receptors, but I do know this: my rather even-keeled, realist of an oncologist, who is one of the eight UCLA oncologists on this trial, showed excitement that I have not yet seen and spoke of the high hopes that this new drug is giving. Further, the research doctor who came in to explain the medication and trial to me said straight out that if anything was going to CURE my cancer, this was. Two weeks ago I was told there was no hope for a cure, and hope is such a beautiful thing.
This new drug, as my feeble understanding allows, chemically binds the two standard drugs given to patients in my situation: Herceptin and Taxotere. Herceptin is a very targeted therapy that only finds and destroys Her2 positive cancer cells. Taxotere is a general chemotherapy drug, found to be quite effective when combined with the targeted Herceptin at treating my kind of cancer. However, being a more general drug, Taxotere interferes with healthy cells as well, which is why you lose your hair when being treated with it.
Apparently, when you bind these two drugs together, the result is an extremely potent, very targeted cancer killing machine. Being as targeted as it is, it is my understanding that I will not lose my hair if given this drug instead of the standard treatment. At this point, believe me, losing my hair is far from my greatest concern, but, hey, if I can keep it that's great news!
You may notice that I used the word "if" above. IF I get this new drug. Being that this is a clinical trial, there must be a control group. 50% of people enrolled in this study will receive the new drug and 50% will receive the standard treatment of Herceptin and Taxotere that I was scheduled to begin receiving tomorrow before the trial came up. Of course, it is my great hope that I will be computer randomized into the test group as opposed to the control. However, if I am placed in the control group and do not respond well to standard treatment, my doctor can switch me to the new drug since I am a trial participant. For this reason, we have come to view this trial as my golden ticket, as I will have access to this drug if I need it simply by having lucked into a slot.
To give you an idea of the scope of this and just how fortunate I am to be a part of this, here are some statistics for you: There are 120 people in this trial at 25 centers around the world. There are only 10 enrolled at UCLA, where there are 8 doctors and a full time study nurse following the 10 of us. Regardless of which group I end up in, my case will be scrutinized as if I were a bug under a microscope. In this case, scrutiny is a very good thing.
Just having a study nurse assigned to me is a blessing in and of itself. She is in constant contact with me, letting me know what is happening, what I need to do, and what my test results are looking like. Again, a very good thing.
So, pending my final acceptance in the study, which should come tomorrow, I will begin treatment next Monday the 14th. I truly can't wait to get this started. I am ready!
Friday, December 04, 2009
Update
It has been a wild ride this week on our medical roller coaster.
As I type, I am in the waiting room of the surgical center where, in about an hour, they will insert a device called a portacath into my chest. This is a semi-permanent catheter that resides under the skin and allows for easier administration of the chemotherapy drugs.
On another note, I have been offered a spot in a clinical trial of a new, powerful drug for Her2 positive metastatic breast cancer. This is huge for me and exactly what my hope had been in choosing UCLA for my treatment.
It looks like they are ready for me, so I will post more on this later!
As I type, I am in the waiting room of the surgical center where, in about an hour, they will insert a device called a portacath into my chest. This is a semi-permanent catheter that resides under the skin and allows for easier administration of the chemotherapy drugs.
On another note, I have been offered a spot in a clinical trial of a new, powerful drug for Her2 positive metastatic breast cancer. This is huge for me and exactly what my hope had been in choosing UCLA for my treatment.
It looks like they are ready for me, so I will post more on this later!
Tuesday, December 01, 2009
Happy Birthday, Natalie!
She loved her cake. She loved her gifts. She loved it when we sang Happy Birthday. How typical of this delightful, happy child who is so easy to please!
Natalie, I cannot believe it was only a year ago that we welcomed you into the world, as it now seems a lifetime ago. You were absolutely meant to be in our family and the world is a better place because you are here, beautiful daughter!
Natalie received the best gift of all from her doctor yesterday...official release from her hip abduction brace! Her hip angles, while still not perfectly proportional, are below threshold levels for treatment, so she is free at last. Her doctor will check her in a year, then in two years to be sure things are correcting on their own, which they often do from this point on. We are cautiously optimistic that her treatment is over and delighted that she is now free to begin walking and continue crawling unfettered.
Happy birthday, Natalie Lucia. Your name literally means "light of Christmas", but please know that for us you light up the rest of the year as well.
Monday, November 30, 2009
Hip Hip Her2-Ray
Just when you think you've got a plan, everything changes.
We learned today that my cancer is Her2 positive. We had been waiting for a pathology culture that tested for this and it came back today.
At first glance, this might seem unfortunate. Her2 positive cancer is very aggressive and historically has a poor prognosis. The Her 2 receptors, as I understand it, cause the cells to divide rapidly and get out of control quite easily.
However, Dr. Chang (my surgeon) declared that this was "outstanding" news because it means that an aggressive treatment option, previously unavailable to me, is now open. In her experience, treatment with Herceptin (a relatively new drug for Her2 positive cancers) gives us a chance not just to halt the growth of the cancer as the hormone therapy might, but to possibly shrink it back. In particular, it has a unique chance of getting rid of Her2 positive cancer cells that have spread outside of the original tumor (in my case, liver and bone). Other therapies cannot do this. Dr, Chang had told me last week that she was hopeful we would get a positive result, and was nothing short of delighted when she called to deliver the news that we had indeed achieved this.
I have yet to discuss what this means to me practically with my oncologist. However, within an hour of receiving these results his office called to set up an appointment, so clearly he intends to move quickly with an alteration to my therapy. I see him on Wednesday.
Herceptin is most often given in conjunction with chemotherapy. So, just when I thought I'd have three months of not-too-bad, I am now likely faced with "here we go". But you know, I'm ready for this. I want to really feel like I am hurting the cancer and so far I have not felt much of anything.
So, bring on the baldness, the vomit, the fatigue. I am stronger than you, cancer, and we are going to bring you down!
We learned today that my cancer is Her2 positive. We had been waiting for a pathology culture that tested for this and it came back today.
At first glance, this might seem unfortunate. Her2 positive cancer is very aggressive and historically has a poor prognosis. The Her 2 receptors, as I understand it, cause the cells to divide rapidly and get out of control quite easily.
However, Dr. Chang (my surgeon) declared that this was "outstanding" news because it means that an aggressive treatment option, previously unavailable to me, is now open. In her experience, treatment with Herceptin (a relatively new drug for Her2 positive cancers) gives us a chance not just to halt the growth of the cancer as the hormone therapy might, but to possibly shrink it back. In particular, it has a unique chance of getting rid of Her2 positive cancer cells that have spread outside of the original tumor (in my case, liver and bone). Other therapies cannot do this. Dr, Chang had told me last week that she was hopeful we would get a positive result, and was nothing short of delighted when she called to deliver the news that we had indeed achieved this.
I have yet to discuss what this means to me practically with my oncologist. However, within an hour of receiving these results his office called to set up an appointment, so clearly he intends to move quickly with an alteration to my therapy. I see him on Wednesday.
Herceptin is most often given in conjunction with chemotherapy. So, just when I thought I'd have three months of not-too-bad, I am now likely faced with "here we go". But you know, I'm ready for this. I want to really feel like I am hurting the cancer and so far I have not felt much of anything.
So, bring on the baldness, the vomit, the fatigue. I am stronger than you, cancer, and we are going to bring you down!
Thursday, November 26, 2009
More Thankful Than Ever
I am acutely aware of my blessings on this Thanksgiving Day. Never before have they seemed so bountiful...and fragile.
I don't belive I have ever been so thankful to simply be present at the table, sharing the meal with my family. Nor have I ever really appreciated the strength I had to help prepare the meal and clean up after it. But I did today.
I am beyond grateful for my marriage, unshaken by life's twists and turns, that will endure all things to come, and for my extraordinary husband who makes me a better person.
I am so very blessed by my seven healthy children. Today I delighted particularly in their observations and activities, and simply enjoyed the buzz of their circulating around me. (Until, that is, the buzz got so loud that it annoyed me, at which time I chased them all out of the kitchen unceremoniously.)
No one has ever been surrounded by a more supportive and loving community of family and friends, both near and far. I am thankful for every email and phone call and blog comment I have received, letting me know you are all thinking of me and wishing me well.
I am thankful for doctors and researchers, and for all who have traveled this road before me and helped to pave it.
But most of all I am thankful for my faith, which is strengthened through my own weakness. Without it, none of this would make sense.
Happy Thanksgiving--may your blessings be counted as many!
I don't belive I have ever been so thankful to simply be present at the table, sharing the meal with my family. Nor have I ever really appreciated the strength I had to help prepare the meal and clean up after it. But I did today.
I am beyond grateful for my marriage, unshaken by life's twists and turns, that will endure all things to come, and for my extraordinary husband who makes me a better person.
I am so very blessed by my seven healthy children. Today I delighted particularly in their observations and activities, and simply enjoyed the buzz of their circulating around me. (Until, that is, the buzz got so loud that it annoyed me, at which time I chased them all out of the kitchen unceremoniously.)
No one has ever been surrounded by a more supportive and loving community of family and friends, both near and far. I am thankful for every email and phone call and blog comment I have received, letting me know you are all thinking of me and wishing me well.
I am thankful for doctors and researchers, and for all who have traveled this road before me and helped to pave it.
But most of all I am thankful for my faith, which is strengthened through my own weakness. Without it, none of this would make sense.
Happy Thanksgiving--may your blessings be counted as many!
Wednesday, November 25, 2009
Wishing For My Own Personal Summer
I am waiting.
Just waiting for hot flashes, night sweats or any other tell-tale sign that the estrogen is departing my body in a hurry. So far, all I'm feeling is tired and occasionally dizzy, and that is not definitive enough for me. I want to FEEL that I'm kicking this cancer where it lives.
Perhaps I should just be grateful that I'm feeling well (and I'm sure when symptoms do kick in I will wish myself right back where I am right now) but I'm ready to feel something, anything that tells me we are gaining some ground.
After so much activity and lots of news in such a short period of time, I think I am going to have trouble adjusting to this waiting period. Three months with no progress reports, feedback or status is going to seem like three years.
Thanks for waiting with me and keeping me afloat.
Just waiting for hot flashes, night sweats or any other tell-tale sign that the estrogen is departing my body in a hurry. So far, all I'm feeling is tired and occasionally dizzy, and that is not definitive enough for me. I want to FEEL that I'm kicking this cancer where it lives.
Perhaps I should just be grateful that I'm feeling well (and I'm sure when symptoms do kick in I will wish myself right back where I am right now) but I'm ready to feel something, anything that tells me we are gaining some ground.
After so much activity and lots of news in such a short period of time, I think I am going to have trouble adjusting to this waiting period. Three months with no progress reports, feedback or status is going to seem like three years.
Thanks for waiting with me and keeping me afloat.
Because There Are Other Things In Life Besides CANCER!
I don't know what's wrong with my photo editor, but if you can focus on this microscopic image you will see that it is a photo of my very happy eldest son Joey, clutching his second consecutive Superbowl trophy. It was earned last Saturday in a complete domination (28-0 I think) of the Jets, his team's long time Rivals. The boys end their regular season undefeated and, all told, it has been 22 games since they have lost. As wonderful as this is, it's starting to get a little boring...we haven't seen a really close game in a year! In search of a challenge, the Rebels will be traveling to the Jr. Rose Bowl next week in Anaheim where they will attempt to defend their title as champions. In addition, they play the Superbowl champs of the Los Angeles Youth Football League on December 12th.
Thank goodness it's still football season around here, because it is a great distraction for the whole family.
Tuesday, November 24, 2009
Guerilla Warfare
First things first: I am delighted with my Oncologist. His name is Dr. John Glaspy and I am completely confident in his ability to handle my situation in the best possible way. He is the Chief of Oncology/Hemotology at UCLA and a very published researcher who will know of and have access to the newest and most advanced cancer treatment therapies as they become available over the years. I am fortunate to be in his care.
As we suspected would the case, the game plan has changed now that the cancer has spread. Initially we thought we would attack it hard and cut it out, in hopes that we would kill it all and be done with it. This is no longer an option for me. As Dr. Glaspy explained, if we try to win this war, it will kill me in the process. Short of a miracle cure (which, by the way I am most certainly NOT discounting), I will always have this cancer and I will alway be fighting it.
Now, I must admit, this has taken a little swallowing, this change of mindset. When you have something dangerous and unwelcome growing in your body, every instinct you have is to squash it out and dominate it completely. Instead, I must learn to co-exist peacefully with this. The goal is this: keep me alive as long as possible with the best quality of life possible. Really aggressive treatments are not sustainable over the long haul (and believe me, the long haul is what we want!) so for now we are going with the old adage "slow and steady". It won't win the race but should give us the best combination of results.
Like guerrilla soldiers, we will not attack head-on or draw battle lines. Instead, we will constantly annoy it...drop grenades on it from here and there instead of firing bazookas. As good guerrilla fighters, the first thing we are going to do is cut off the cancer's food supply and watch it flail around for awhile. This should make it good and angry.
My particular cancer, as Dr. Glaspy explained it to me, is addicted to estrogen. It is what it feeds on to grow. If we cut off the estrogen available to it, it should cease growing for now, and may even shrink a bit. This may work for a few years (or much more or much less) and then, when we need to, we will talk about what needs to happen next. All the avenues of chemo treatment are still open to me, but we won't break them out until (and if) the cancer stops responding to this starvation, which is called "hormone therapy".
So, you may ask, how do we cut off the estrogen supply to the cancer? By completely removing it from my body in a very short amount of time. Like the cancer, my body is not going to enjoy this very much. Essentially, I will be passing into complete menopause in a matter of days. Most women find this uncomfortable spread over months as the body adjusts, so he has warned me that I am likely to find it quite uncomfortable for a few weeks. Still, it all sounds better than chemo to me, so it's all relative at this point!
This is the plan: we will begin to shock the estrogen out of my system today with an injection and oral therapy that will continue for 3 months. At the end of 3 months we will re-scan my entire body to see if we have indeed halted the growth of the cancer. If it is working, we will remove my ovaries to make my post-menopausal status permanent and consider whether or not to proceed with the masectomy, depending on how the breast tumor is looking.
Warning: I am apparently going to be intensely crabby and weepy over the next few weeks. (Pray for Jay!) It has been suggested to me that I consider laying off the blog during this time in case I alarm any of you with what are sure to be crazily shifting perspectives on all of this. I may and I may not, but do be forewarned as to the potential instability of my sanity as my body adjusts. By all accounts it will return eventually.
Oh, I almost forgot to mention the really good news in all of this: So far, the spreading cancer has not done much damage to my liver. It is sprinkled all over it like fairy dust, but has not really dug in anywhere and affected its function. So, if we stop this thing where it is I can literally live for decades with it. That's right, decades! This is so much more than we hoped for when we walked into that office yesterday, and hope is such a good thing.
Of course, the less attractive alternative remains that the cancer does not respond to hormone therapy at all and continutes to grow over the next three months, so please pray specifically that it responds (and keep up with that whole complete miracle cure thing too, if you don't mind!).
Thanks again, amazing family and friends. You teach me strength, faith and charity, and humble me with your kindness.
As we suspected would the case, the game plan has changed now that the cancer has spread. Initially we thought we would attack it hard and cut it out, in hopes that we would kill it all and be done with it. This is no longer an option for me. As Dr. Glaspy explained, if we try to win this war, it will kill me in the process. Short of a miracle cure (which, by the way I am most certainly NOT discounting), I will always have this cancer and I will alway be fighting it.
Now, I must admit, this has taken a little swallowing, this change of mindset. When you have something dangerous and unwelcome growing in your body, every instinct you have is to squash it out and dominate it completely. Instead, I must learn to co-exist peacefully with this. The goal is this: keep me alive as long as possible with the best quality of life possible. Really aggressive treatments are not sustainable over the long haul (and believe me, the long haul is what we want!) so for now we are going with the old adage "slow and steady". It won't win the race but should give us the best combination of results.
Like guerrilla soldiers, we will not attack head-on or draw battle lines. Instead, we will constantly annoy it...drop grenades on it from here and there instead of firing bazookas. As good guerrilla fighters, the first thing we are going to do is cut off the cancer's food supply and watch it flail around for awhile. This should make it good and angry.
My particular cancer, as Dr. Glaspy explained it to me, is addicted to estrogen. It is what it feeds on to grow. If we cut off the estrogen available to it, it should cease growing for now, and may even shrink a bit. This may work for a few years (or much more or much less) and then, when we need to, we will talk about what needs to happen next. All the avenues of chemo treatment are still open to me, but we won't break them out until (and if) the cancer stops responding to this starvation, which is called "hormone therapy".
So, you may ask, how do we cut off the estrogen supply to the cancer? By completely removing it from my body in a very short amount of time. Like the cancer, my body is not going to enjoy this very much. Essentially, I will be passing into complete menopause in a matter of days. Most women find this uncomfortable spread over months as the body adjusts, so he has warned me that I am likely to find it quite uncomfortable for a few weeks. Still, it all sounds better than chemo to me, so it's all relative at this point!
This is the plan: we will begin to shock the estrogen out of my system today with an injection and oral therapy that will continue for 3 months. At the end of 3 months we will re-scan my entire body to see if we have indeed halted the growth of the cancer. If it is working, we will remove my ovaries to make my post-menopausal status permanent and consider whether or not to proceed with the masectomy, depending on how the breast tumor is looking.
Warning: I am apparently going to be intensely crabby and weepy over the next few weeks. (Pray for Jay!) It has been suggested to me that I consider laying off the blog during this time in case I alarm any of you with what are sure to be crazily shifting perspectives on all of this. I may and I may not, but do be forewarned as to the potential instability of my sanity as my body adjusts. By all accounts it will return eventually.
Oh, I almost forgot to mention the really good news in all of this: So far, the spreading cancer has not done much damage to my liver. It is sprinkled all over it like fairy dust, but has not really dug in anywhere and affected its function. So, if we stop this thing where it is I can literally live for decades with it. That's right, decades! This is so much more than we hoped for when we walked into that office yesterday, and hope is such a good thing.
Of course, the less attractive alternative remains that the cancer does not respond to hormone therapy at all and continutes to grow over the next three months, so please pray specifically that it responds (and keep up with that whole complete miracle cure thing too, if you don't mind!).
Thanks again, amazing family and friends. You teach me strength, faith and charity, and humble me with your kindness.
Sunday, November 22, 2009
The Agony in the Garden
Since Monday, my meditations on the mysteries of the rosary have taken on a new light. I suppose this is natural, since I have experienced this before through other events of my life. As my perspective on things changes, so does my understanding of the events of the lives of Jesus and Mary. This is part of why the rosary is such a beautiful prayer.
I find myself suddenly with new perspective on what it must have been like for Jesus while he waited and prayed in the Garden of Gethsemene.
Jesus knew what was coming. He knew the soldiers would come for him, and he knew he would suffer great physical and emotional pain, though at that time he was only experiencing the agony of anticipation.
He knew he would be leaving his disciples to fend for themselves and had to trust that the principals he had instilled in them would bear fruit. He also knew they would stumble along the way.
He prayed that this cup might pass him by. Yet, even in his distress, he remembered "Thy will be done, not mine."
He watched as his friends repeatedly fell asleep, though he asked them to wait and pray with him.
Like Jesus, I know what is coming. I know that the soldiers are coming for me, though I can only physically sense the barest hint of their presence right now. I know that there will be great physical and emotional anguish ahead for me and for my family and friends, yet right now I see only the graces that this situation is bringing as my community surrounds me with strength.
Like Jesus, I know that I may be leaving my children, hopefully not physically anytime soon, but to a degree, while I turn to face my battle. I must trust that God, with the assistance of my family and friends, will guide them through the worst parts of this when I am unable to, and that the seeds we have planted in them will bear great fruit in this time of trial.
Like Jesus, I fervently pray that this cup might pass me by. But always, His will be done.
However, unlike Jesus, my friends and family have not fallen asleep. You are all very much here with me in the garden and wait, wide awake, to face this by my side. Because of this, I will never truly understand the depth of Jesus' suffering. Thank you.
We always teach our children to pray, "Please let me be like Jesus." Well, now I have the chance.
I find myself suddenly with new perspective on what it must have been like for Jesus while he waited and prayed in the Garden of Gethsemene.
Jesus knew what was coming. He knew the soldiers would come for him, and he knew he would suffer great physical and emotional pain, though at that time he was only experiencing the agony of anticipation.
He knew he would be leaving his disciples to fend for themselves and had to trust that the principals he had instilled in them would bear fruit. He also knew they would stumble along the way.
He prayed that this cup might pass him by. Yet, even in his distress, he remembered "Thy will be done, not mine."
He watched as his friends repeatedly fell asleep, though he asked them to wait and pray with him.
Like Jesus, I know what is coming. I know that the soldiers are coming for me, though I can only physically sense the barest hint of their presence right now. I know that there will be great physical and emotional anguish ahead for me and for my family and friends, yet right now I see only the graces that this situation is bringing as my community surrounds me with strength.
Like Jesus, I know that I may be leaving my children, hopefully not physically anytime soon, but to a degree, while I turn to face my battle. I must trust that God, with the assistance of my family and friends, will guide them through the worst parts of this when I am unable to, and that the seeds we have planted in them will bear great fruit in this time of trial.
Like Jesus, I fervently pray that this cup might pass me by. But always, His will be done.
However, unlike Jesus, my friends and family have not fallen asleep. You are all very much here with me in the garden and wait, wide awake, to face this by my side. Because of this, I will never truly understand the depth of Jesus' suffering. Thank you.
We always teach our children to pray, "Please let me be like Jesus." Well, now I have the chance.
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