People keep asking me, "How are you doing, Really?" I don't blame them one bit. Let's face it, we've all done it, answered that question, "fine" when we really don't believe the answer. Usually just to move on the next thing, not open up to some vunerability or because we can't be bothered with the real answer. I've done it a thousand times, so what's the real answer for me?
Well in the last few weeks its changed daily, sometimes hourly. However, since going on vacation and even (much to my surprise) since being back, I can answer honestly I am doing really well, dare I even say (insert whisper) great?
I won't say I never have my moments of fear of death, fear of chemo, fear of vomiting my way through the next 4 months, but in general I feel like I am being taken care of by the ultimate nurse, our Lord. Some of you will read that and say, "Amen, sister!" others of you will read that and say, "oh, brother, what a whack job, this cancer thing really made her nuts." Only those who have really experienced what its like to be in the midst of the storm may understand. That story of Jesus in the storm has really spoken to me in recent months. I read it in church one day. I am sure I have heard it a thousand times before, but it was different this time. It goes something like this...
Jesus is in a boat with some of his disciples. They are trying to fish, he is trying to get some shut-eye. Who knows why he is sleeping, its not like he wasn't a busy guy. Maybe he had had a lot of talks that day, maybe a lot of healings, maybe he had been traveling for days, maybe he was just exhausted from dealing with all the emotional needs and wants of others (boy, haven't we all been there at some point or other) but he was snoozin'. So then all hell brakes loose. A storm (like something out of the perfect storm) hits them like a hurricane. Here's the kicker and the part that recently got to me. JESUS IS STILL ASLEEP! I read that about 2 weeks after my diagnosis and I even wrote a note next to the margin that said, "do I feel like he is still asleep in my storm?" The disciples are in a panic that they will die. (I am in a panic that I will die) and Jesus is still asleep, why???? Here's the good news...
If I were asleep and the kids started into panic, but I knew before I fell asleep that this panic would be over nothing and that I was going to fix it just fine when I woke up and (most importantly) if I knew that no harm would come to them during whatever crisis they were experiencing, I might keep sleeping too. That's Jesus. He knew. He knew that the storm was not going to harm them, almost as trivial as when I know that my daughter's life is not going to end when she can't find a hair clip to match her outfit.
Why didn't the disciples know? I mean come on, Jesus had healed, calmed and restored endless times for all of them to see. Why didn't I know, I mean Jesus had healed me when I thought Bethany was going to be born way too soon (despite many doctors disbelief), Jesus had calmed me when I was scared about all my boyfriend break-ups, test flunkings, or disappointing someone I cared for. Jesus had restored me when I thought I would never get married, or when someone hurt me. Why didn't I know that he was sleeping in my storm, because he knew I would not be harmed?
I imagine I will struggle with that on and off for a long time. But for now, thanks to good doctors, a great network of family and friends and a true peace that can only come from the Lord, I feel like my storm may not be calm, but I can hold onto the helm and know that Jesus will come to captain the ship when it becomes too much for me to deal with.
Does that mean I won't have pain, vomiting, or heartache? No. Does that mean I won't die someday? Of course not. Does it mean that I can wake up everyday and be thankful that I even have the chance to ride out the storm? Absolutely.
So how am I doing, really? I am thankful and peaceful about the fact that I even have a seat on the boat. I feel like life can and will go on for me. I feel like I will take one Savior on board asleep and all powerful, then no savior at all. That's how I am doing, really.
Thursday, July 27, 2006
Tuesday, July 25, 2006
Time for some comic relief...
I found a great new website, called www.planetcancer.org It has great stuff for people coping with cancer including a humor section called "Cancertainment" I want the T-shirts they sell, they are so funny!!! Thought I would share some of my favorite things.
Monday, July 24, 2006
Gotta love the second opinion
Today was a good doctor day.
I had my 1st appointment at 8:15 this morning in Salem (about a half hour away) and it was my second opinion with a new oncologist. I had heard that is Dr. was a Christian, but I also went into this meeting fully prepared to have to plead my case for the DD (dense dose) chemo and addition of Taxol to the AC. As described in my previous blog I had done some research on both of these items and felt hope at the results these additional treatments seem to be offering in lessening the chance of recurrence. My first oncologist said these studies had not changed the standard protocol at all and had not indicated a change in outcome. The more I thought about this, the more I realized, what he was saying is, "if you are going to get your cancer back and die from it, these things will not change that." What I realized is that though these things may not change the final outcome they do a great deal in prolonging or delaying that outcome. In the worst case scenario the cancer comes back (which I believe in my heart of hearts that it won't, but I have to at least entertain the thought) if I do the first doctor's suggestion of treatment, it could kill me in 10 years, but adding these additional things I could push that recurrence back to maybe 15 years, no one really knows. The really big thing that also matters is that no one knows how far the research and cure options will have come in 5 extra years. So yes, my options may not change my ultimate outcome with today's knowledge, but my additional aggressiveness may very well change my outcome with tomorrow's advances. If you look at pure numbers alone, if I do no additional treatment, my chance of recurrence for my age is 30%. With AC chemo alone its 20%, with the addition of Taxol its 15%, with the DD and possible later treatments it is reduced to as little as 12%. I will take those odds.
Let me digress for a moment to talk about the value of being your own best advocate for care. I walked into this dr.'s office armed with a full arsensol of current research, a full understanding of my type of cancer (THIS IS KEY, KNOW YOUR ENEMY) and a general understanding of the pros, cons, risks and side effects my options included. My Dr. laughed at me that I was the first patient he had every had that came with my own personal print out of a treatment module that is supposed to be only available to Drs. (yes, unofficially, for registration purposes, as of yesterday there is a website that now believes I am Dr. Kat Werner) However, the module I printed out was the exact same computer module that he used to determine my treatment plan. It pays, sometimes with your very life, to be your own best doctor and researcher.
All this being said, it took no convincing, this new oncologist, Dr. Fintel, agreed exactly with my treatment suggestions for exactly the reasons I decided to do them. So he is officially my new oncologist. I will start with 4 rounds of DD AC (dense dose AC) that is chemo once every two weeks, closer together than my original treatment with the same amount of chemo, (that is why it is much more intense, your body has less time to recover between hits) followed by 4 rounds of taxol or taxane. The frequency of the taxol will be decided after the AC. Getting this in DD is not as important. So at the maximum at this point we are assuming I will have 20 weeks of chemo.
Dr. Fintel also addressed to other major issues that my first Dr. had dismissed or ignored. First, Dr. Fintel insists I have an internal line or porta-cath put in. This is a temporary line (for the duration of my treatment) that is surgically implanted in my arm that ties in directly to my arteries to administer my meds. Chemo is rough on the veins and this will eliminate me losing most of my good veins in my arms as they search for a new one to use each treatment. Also, this will prevent me from having arms that look like I am a drug user for the rest of my life. This is a half day out patient procedure that he will do himself (yes, I will be knocked out for them to do it). So my start of chemo will now be determined by when they can put that in. They can start chemo as soon as the next day. I will let you know when I do.
Secondly, Dr. Fintel addressed the issue of future hysterectomy. I asked him when he recommended I do this and he responded, "Well that depends, are you done having kids yet?" I said, "what do you mean, I thought I shouldn't have any more kids because of the cancer recurrence." To which he said, "No, if you were hormone positive (estrogen and progesterone) then I would recommend against it, but since you are hormone negative not only does pregnancy not have anything to do with recurrence, but there are some recent studies that suggest pregnancy in hormone negative women after cancer has decreased their chance of recurrence." I thought he was going to have to scrap me off the floor. I had completely prepared myself for the end of my child bearing. I had rationalized through it, tried to convince myself that it was for the best and tried not to think about it. Now, he was telling me we could think about it as a someday possibility again. Obviously this is a discussion for another time, and won't be considered until 2-3 years after treatment, but even the hope of the possibility gives me warm fuzzies again. I said to Jeff just last night that it was the one thing I was most sad about losing in all this, and I couldn't help but look around our family and feel like someone is still missing. He said on my last kid, during my last C-section, just ask my OB to do a full hysterectomy and I would be done with it.
Now you can see why it was a good Doctor day.
love
Kat
I had my 1st appointment at 8:15 this morning in Salem (about a half hour away) and it was my second opinion with a new oncologist. I had heard that is Dr. was a Christian, but I also went into this meeting fully prepared to have to plead my case for the DD (dense dose) chemo and addition of Taxol to the AC. As described in my previous blog I had done some research on both of these items and felt hope at the results these additional treatments seem to be offering in lessening the chance of recurrence. My first oncologist said these studies had not changed the standard protocol at all and had not indicated a change in outcome. The more I thought about this, the more I realized, what he was saying is, "if you are going to get your cancer back and die from it, these things will not change that." What I realized is that though these things may not change the final outcome they do a great deal in prolonging or delaying that outcome. In the worst case scenario the cancer comes back (which I believe in my heart of hearts that it won't, but I have to at least entertain the thought) if I do the first doctor's suggestion of treatment, it could kill me in 10 years, but adding these additional things I could push that recurrence back to maybe 15 years, no one really knows. The really big thing that also matters is that no one knows how far the research and cure options will have come in 5 extra years. So yes, my options may not change my ultimate outcome with today's knowledge, but my additional aggressiveness may very well change my outcome with tomorrow's advances. If you look at pure numbers alone, if I do no additional treatment, my chance of recurrence for my age is 30%. With AC chemo alone its 20%, with the addition of Taxol its 15%, with the DD and possible later treatments it is reduced to as little as 12%. I will take those odds.
Let me digress for a moment to talk about the value of being your own best advocate for care. I walked into this dr.'s office armed with a full arsensol of current research, a full understanding of my type of cancer (THIS IS KEY, KNOW YOUR ENEMY) and a general understanding of the pros, cons, risks and side effects my options included. My Dr. laughed at me that I was the first patient he had every had that came with my own personal print out of a treatment module that is supposed to be only available to Drs. (yes, unofficially, for registration purposes, as of yesterday there is a website that now believes I am Dr. Kat Werner) However, the module I printed out was the exact same computer module that he used to determine my treatment plan. It pays, sometimes with your very life, to be your own best doctor and researcher.
All this being said, it took no convincing, this new oncologist, Dr. Fintel, agreed exactly with my treatment suggestions for exactly the reasons I decided to do them. So he is officially my new oncologist. I will start with 4 rounds of DD AC (dense dose AC) that is chemo once every two weeks, closer together than my original treatment with the same amount of chemo, (that is why it is much more intense, your body has less time to recover between hits) followed by 4 rounds of taxol or taxane. The frequency of the taxol will be decided after the AC. Getting this in DD is not as important. So at the maximum at this point we are assuming I will have 20 weeks of chemo.
Dr. Fintel also addressed to other major issues that my first Dr. had dismissed or ignored. First, Dr. Fintel insists I have an internal line or porta-cath put in. This is a temporary line (for the duration of my treatment) that is surgically implanted in my arm that ties in directly to my arteries to administer my meds. Chemo is rough on the veins and this will eliminate me losing most of my good veins in my arms as they search for a new one to use each treatment. Also, this will prevent me from having arms that look like I am a drug user for the rest of my life. This is a half day out patient procedure that he will do himself (yes, I will be knocked out for them to do it). So my start of chemo will now be determined by when they can put that in. They can start chemo as soon as the next day. I will let you know when I do.
Secondly, Dr. Fintel addressed the issue of future hysterectomy. I asked him when he recommended I do this and he responded, "Well that depends, are you done having kids yet?" I said, "what do you mean, I thought I shouldn't have any more kids because of the cancer recurrence." To which he said, "No, if you were hormone positive (estrogen and progesterone) then I would recommend against it, but since you are hormone negative not only does pregnancy not have anything to do with recurrence, but there are some recent studies that suggest pregnancy in hormone negative women after cancer has decreased their chance of recurrence." I thought he was going to have to scrap me off the floor. I had completely prepared myself for the end of my child bearing. I had rationalized through it, tried to convince myself that it was for the best and tried not to think about it. Now, he was telling me we could think about it as a someday possibility again. Obviously this is a discussion for another time, and won't be considered until 2-3 years after treatment, but even the hope of the possibility gives me warm fuzzies again. I said to Jeff just last night that it was the one thing I was most sad about losing in all this, and I couldn't help but look around our family and feel like someone is still missing. He said on my last kid, during my last C-section, just ask my OB to do a full hysterectomy and I would be done with it.
Now you can see why it was a good Doctor day.
love
Kat
Sunday, July 23, 2006
Back from Disney World
Greetings all my wonderful friends and family. Your encouragement, emails, comments and words of love have really fueled me the last few weeks, thank you so much. I thought about many of you and your out-pouring of love while we were on vacation. I have quickly learned it is much more fun to focus on the love and blessings rather than the fear and doubt.
We returned late on Friday night. We decided to drive straight home since we didn't want to have to do another day of driving and spend a night in a hotel. We learned on our trip down to Disney that Liam has now learned how to quickly climb out of his pack 'n play, making him impossible to contain from running around if and when he decides to get up for the morning (or in the middle of the night for that matter)
As I posted earlier, we had an amazing time at Disney. Though I was ready to sleep in my own bed, use my own shower and lay on my own couch, I was a little heavy hearted about coming home. Jeff was ready to be back, I knew that as soon as I walked into the house I would have to start dealing with cancer "stuff" again. I unpacked, seeing all my notes, pamphlets, special bras and bandages laying about. In Disney World, I didn't have to think about that stuff. I didn't have to take meds, only had to change a "steristrip" (a small tape that runs along my incision) once a day and was in general in very little pain. I found myself tired at the end of the day, but after a full day in 100 degree humid weather, walking around all day, who wouldn't be?
First thing tomorrow morning, the doctors appointments begin again. I am sick of the doctors. I know they wouldn't take it personally to tell them that. I haven't actually counted, but I think I have been to 25-30 doctors appointments/tests since this all began. I have had at least 10 hospital tests, and two surgical procedures. I have only just begun. Tomorrow I meet with a second oncologist for a second opinion (more on that in a little bit), my general surgeon for a follow up to my surgery, and an ob/gyn for a full check up "down there" before the ravages of chemo hit me. I will also be discussing with them my future for prophylactic oopherectomy (removing my ovaries) vs. Hysterectomy. Tuesday I have a bone scan and numerous CT scans.
I have already had a heart scan to make sure my heart can handle the chemo. Its funny, I said to the tech as she was wheeling me into the machine, "Isn't this a little bit like the doctor's physical they give a boxer right before he gets the heck beat out of him?" Just making sure I am healthy enough to get the heck beat out of me. :)
Friday, I have an appointment for my first "fill up." This means I will go to the plastic surgeon and they will begin adding about 50 cc of saline to each of my tissue expanders, the purpose being to grow enough skin for my eventual implants. They will do this process every 2 weeks or so until I have reached the desired size (on average about 400 cc of fluid) I have also asked my sister to come with me before this appointment to a special wig store so I can be fitted for and pick out my wig of choice. On average most women lose their hair about 14 days after their first chemo treatment, so I want to have one on hand for when that happens.
Now on to the chemo question. I have been researching my little brown eyes out. Thank God for the internet, I can't imagine having access to this kind of research even 10 years ago. What I have learned is that even though I am "node negative" if my tumor were just slightly bigger (2.0 cm instead of 1.8 cm) I would be considered stage 2 breast cancer. This matters to me because at stage 2, my chemo treatment would be more aggressive and more frequent. Given my age and family history I had already opted to be as aggressive as possible. Well, there is two recent studies that impact me on this. First, there is evidence to suggest that having chemo in "dose dense" (every 2 weeks instead of every 3 weeks) has provided some significant strides in early research to indicate it has lessened the chance of recurrence. This research is only about 5 years old, but has already indicated an average of 42 % better results. The second study that affects me is the decrease (about 8%) in recurrence of cancer in women who have 4 rounds of AC chemo and 4 rounds of Taxol type chemo. Well this all seems like great news, Kat, go for it right? Here's the rub...neither of these things are considered protocol for treatment yet. In otherwords, its not the default of what oncologists are doing now to treat my cancer. Usually it takes a little bit more time in research and evidence before something will be switched to the new protocol.
Here's where my battle begins...I have a second opinion tomorrow and I would like to put on the table a proposition for me to do the "dose dense 4 rounds of AC and 4 rounds of Taxol". I have already talked to my first oncologist about the additional chemo of taxol and he was not in favor of the idea, since it is not "protocol" yet. This is where the value of numerous opinions comes in. I will probably say this a thousand times, but if you ever have a major medical problem ALWAYS GET A SECOND OPINION!!! I have already learned that with my surgeons, it is so important. I need to discern if I want to continue to push for this very aggressive form of chemo. I have no delusions that it will be easy or fun, but I don't want to wonder if I should have pushed harder many years from now. So for today, and tomorrow that is my prayer request. That I will either find favor with the new oncologist for this more aggressive chemo, or that I will find peace in the decision that the less aggressive chemo is more than enough for my cancer (after all its already gone and the "you are not welcome here" sign is on the door).
I will post pics from our trip in coming days. Thank you a thousand times for your prayers, we felt them from day one and in every detail. I will share more about the "God sightings" we had on this trip later.
love
Kat
We returned late on Friday night. We decided to drive straight home since we didn't want to have to do another day of driving and spend a night in a hotel. We learned on our trip down to Disney that Liam has now learned how to quickly climb out of his pack 'n play, making him impossible to contain from running around if and when he decides to get up for the morning (or in the middle of the night for that matter)
As I posted earlier, we had an amazing time at Disney. Though I was ready to sleep in my own bed, use my own shower and lay on my own couch, I was a little heavy hearted about coming home. Jeff was ready to be back, I knew that as soon as I walked into the house I would have to start dealing with cancer "stuff" again. I unpacked, seeing all my notes, pamphlets, special bras and bandages laying about. In Disney World, I didn't have to think about that stuff. I didn't have to take meds, only had to change a "steristrip" (a small tape that runs along my incision) once a day and was in general in very little pain. I found myself tired at the end of the day, but after a full day in 100 degree humid weather, walking around all day, who wouldn't be?
First thing tomorrow morning, the doctors appointments begin again. I am sick of the doctors. I know they wouldn't take it personally to tell them that. I haven't actually counted, but I think I have been to 25-30 doctors appointments/tests since this all began. I have had at least 10 hospital tests, and two surgical procedures. I have only just begun. Tomorrow I meet with a second oncologist for a second opinion (more on that in a little bit), my general surgeon for a follow up to my surgery, and an ob/gyn for a full check up "down there" before the ravages of chemo hit me. I will also be discussing with them my future for prophylactic oopherectomy (removing my ovaries) vs. Hysterectomy. Tuesday I have a bone scan and numerous CT scans.
I have already had a heart scan to make sure my heart can handle the chemo. Its funny, I said to the tech as she was wheeling me into the machine, "Isn't this a little bit like the doctor's physical they give a boxer right before he gets the heck beat out of him?" Just making sure I am healthy enough to get the heck beat out of me. :)
Friday, I have an appointment for my first "fill up." This means I will go to the plastic surgeon and they will begin adding about 50 cc of saline to each of my tissue expanders, the purpose being to grow enough skin for my eventual implants. They will do this process every 2 weeks or so until I have reached the desired size (on average about 400 cc of fluid) I have also asked my sister to come with me before this appointment to a special wig store so I can be fitted for and pick out my wig of choice. On average most women lose their hair about 14 days after their first chemo treatment, so I want to have one on hand for when that happens.
Now on to the chemo question. I have been researching my little brown eyes out. Thank God for the internet, I can't imagine having access to this kind of research even 10 years ago. What I have learned is that even though I am "node negative" if my tumor were just slightly bigger (2.0 cm instead of 1.8 cm) I would be considered stage 2 breast cancer. This matters to me because at stage 2, my chemo treatment would be more aggressive and more frequent. Given my age and family history I had already opted to be as aggressive as possible. Well, there is two recent studies that impact me on this. First, there is evidence to suggest that having chemo in "dose dense" (every 2 weeks instead of every 3 weeks) has provided some significant strides in early research to indicate it has lessened the chance of recurrence. This research is only about 5 years old, but has already indicated an average of 42 % better results. The second study that affects me is the decrease (about 8%) in recurrence of cancer in women who have 4 rounds of AC chemo and 4 rounds of Taxol type chemo. Well this all seems like great news, Kat, go for it right? Here's the rub...neither of these things are considered protocol for treatment yet. In otherwords, its not the default of what oncologists are doing now to treat my cancer. Usually it takes a little bit more time in research and evidence before something will be switched to the new protocol.
Here's where my battle begins...I have a second opinion tomorrow and I would like to put on the table a proposition for me to do the "dose dense 4 rounds of AC and 4 rounds of Taxol". I have already talked to my first oncologist about the additional chemo of taxol and he was not in favor of the idea, since it is not "protocol" yet. This is where the value of numerous opinions comes in. I will probably say this a thousand times, but if you ever have a major medical problem ALWAYS GET A SECOND OPINION!!! I have already learned that with my surgeons, it is so important. I need to discern if I want to continue to push for this very aggressive form of chemo. I have no delusions that it will be easy or fun, but I don't want to wonder if I should have pushed harder many years from now. So for today, and tomorrow that is my prayer request. That I will either find favor with the new oncologist for this more aggressive chemo, or that I will find peace in the decision that the less aggressive chemo is more than enough for my cancer (after all its already gone and the "you are not welcome here" sign is on the door).
I will post pics from our trip in coming days. Thank you a thousand times for your prayers, we felt them from day one and in every detail. I will share more about the "God sightings" we had on this trip later.
love
Kat
Thursday, July 13, 2006
The Princesses are real!
Greetings from Disney World! We have been here 6 days now and we are having an amazing time with Mickey Mouse and all his pals. My prayer that this would be an amazing vacation with little thought of cancer has been answered. The first day we entered the park, Saturday July 8th, was also Jeff's birthday. We had a 10 am appointment to meet the princesses at Cinderella's castle for a morning brunch. (an appointment that took me 6 months to get, not an easy ticket) and something I could claim was for Bethany's sake, but the truth is, I have always wanted to eat at Cinderella's castle. From the moment we entered the Magic Kingdom, my heart was overwhelmed with the intensity of all we have experienced. July 8th, just a quick 1 month ago I was diagnsosed with the beast that would change my life forever. 12 hours, 4 weeks, 2 breasts and uncountable tears ago, I was a different woman than the one that made the plans to be in Disney World at this moment 14 months ago. I could not have known when I made these plans, how important this place and time would become and the enormity of it all hit me from the moment I saw that castle. God knew. He knew that on July 8th, 2006 we would need the healing p0wer of being a kid again, family time together and the excitement of the new future that lies ahead. God knew that the timing, his timing, would be so perfect that my healing would be just enough to get me to this place. God knew that my kids smiles and my husbands knowing looks would mean immeasurably more to me on this day, then any other thing in the whole world.
Jeff and I took turns crying this first day. It was the simple things like characters singing songs in the streets, or the look on Bethany's face when she saw Cinderella, Sleeping Beauty and Belle for the first time. But the culmination came when we saw the most amazing fireworks over Cinderella's castle that night. I found it so prophetic that the display is entitled "wishes" and boy was it true. Jeff and I both fought off the tears the whole time we were there and I knew God was there in our midst.
One of the highlights of that morning was when Bethany leaned over to us at the Breakfast and said, "Mommy, I can't believe it, the princesses are REAL!" Even Liam was excited about this princesses, after all he looks up to his big sister quite a bit, and whatever she loves, he loves.
Our time here has been truly blessed. WE usually go to the parks in the morning, come home to nap (yes, me too, I am not over doing it so don't you all worry) and then we return to the parks in the evening.) So far we have had perfect timing ducking in and out of the parks to avoid rain storms. We are avid sunscreen users and firm believers in using the "fast pass" (this is Disney's brilliant way of having to avoid ever really waiting in line.)
Later today Jeff's family will join us. As I write this, Walt, Jeff's dad is at the doctor receiving the full report on all his tests. WE are praying for good news, and a simple treatment. I will try to update you all in days to come about his diagnosis. We know this will set the tone for the rest of our trip and we are trying to continually focus on life and hope.
In the midst of all of this, the Lord has given me two words that I think about first thing every morning and ring like a chorus in my brain throughout the day, "Live graciously" I think about that as we encounter crowds at the park. I think about it with the kids when they are tired and cranky and I think about it in my thoughts and attitudes. I am almost ashamed to admit that it took cancer to make me think about this so much, but the reality is, that's exactly what it took. I hope that at the very least these words are who I will become and strive to shape my life to be. This is the Lord's life that I am allowed to borrow for a while, not mine, and boy am I glad that he has allowed me to ride along through the journey.
Thank you for your continued prayers, I feel them, I really do.
Please forgive me for not spell checking or grammar checking this blog. I type fast and I am paying for this internet access by the minute.
Love, Kat
Jeff and I took turns crying this first day. It was the simple things like characters singing songs in the streets, or the look on Bethany's face when she saw Cinderella, Sleeping Beauty and Belle for the first time. But the culmination came when we saw the most amazing fireworks over Cinderella's castle that night. I found it so prophetic that the display is entitled "wishes" and boy was it true. Jeff and I both fought off the tears the whole time we were there and I knew God was there in our midst.
One of the highlights of that morning was when Bethany leaned over to us at the Breakfast and said, "Mommy, I can't believe it, the princesses are REAL!" Even Liam was excited about this princesses, after all he looks up to his big sister quite a bit, and whatever she loves, he loves.
Our time here has been truly blessed. WE usually go to the parks in the morning, come home to nap (yes, me too, I am not over doing it so don't you all worry) and then we return to the parks in the evening.) So far we have had perfect timing ducking in and out of the parks to avoid rain storms. We are avid sunscreen users and firm believers in using the "fast pass" (this is Disney's brilliant way of having to avoid ever really waiting in line.)
Later today Jeff's family will join us. As I write this, Walt, Jeff's dad is at the doctor receiving the full report on all his tests. WE are praying for good news, and a simple treatment. I will try to update you all in days to come about his diagnosis. We know this will set the tone for the rest of our trip and we are trying to continually focus on life and hope.
In the midst of all of this, the Lord has given me two words that I think about first thing every morning and ring like a chorus in my brain throughout the day, "Live graciously" I think about that as we encounter crowds at the park. I think about it with the kids when they are tired and cranky and I think about it in my thoughts and attitudes. I am almost ashamed to admit that it took cancer to make me think about this so much, but the reality is, that's exactly what it took. I hope that at the very least these words are who I will become and strive to shape my life to be. This is the Lord's life that I am allowed to borrow for a while, not mine, and boy am I glad that he has allowed me to ride along through the journey.
Thank you for your continued prayers, I feel them, I really do.
Please forgive me for not spell checking or grammar checking this blog. I type fast and I am paying for this internet access by the minute.
Love, Kat
Monday, July 03, 2006
Took a couple days off
I decided I couldn't talk about life for a few days. Since the majority of life now a days has something to do with Cancer I feel like some days I just want a break from my own life. Thursday we leave for Disney World. I can't think of any where else on this earth I would rather be. I was excited a year ago when we started planning this trip, now I am over the moon about it. I feel like a little kid waiting for Christmas. I want to experience the healing power of Mickey Mouse and the "Magic Kingdom".
I have had an ongoing dialogue with God about all this since day one. Some days its pleading, some days its frustration, some days its the desperation to experience His peace. The last few days has been a seeking of discernment of the next decisions I have ahead. As funny as it may seem to some, the decision to have a double mastectomy with reconstruction was not difficult for me. Though it was offered, I didn't even consider the lumpectomy. 90% of that is the mental feeling that my breasts were some diseased part of me that I had to be rid of, combined with the feeling that if I could even buy 1-2% odds in my favor that the cancer would not return, I would take it. The next decision in this journey is a little more complicated.
Enter Chemo....I knew I would have chemo all along. It is an age thing and the type of cancer they found. If I were a 65 year old with the same diagnosis, I may have been fine with the surgery. But, at 31, all parties agree that I have a 30% chance that cancer could return in my body in my lifetime, so chemo is a must.
Chemo is not black or white, there are many shades of grey. I assumed I would just opt for the most aggressive option on all fronts and though it would suck for 6 months as I was going through it, it would help me fight better. Well, I am learning it is not that cut and dry. I am offered AC for 4 cycles (21 days apart), or TC for 4 cycles (similar to AC with perhaps less drain on your heart, but may not be quite as aggressive, they just don't know the long term implications) or if I get picked for the magic formula in the randomized study I could get 6 rounds of FEC. This is believed to be the most aggressive of these three options, but again they just don't know 10, 15, 20 years if it is, that's the point of the study. This is the standard of treatment in Europe, so I know its at least as aggressive and I like the possibility it could be more so, even though I will have to endure 2 additional chemo treatments. However, I have no control over whether I get this or AC, its all decided by a computer somewhere. Lastly, there are some people who believe you should be really aggressive and have 4 rounds of AC and 4 rounds of Taxol after. The problem with this is that it is much tougher on your body, heart and long term wear and tear. There is no evidence that supports the idea that adding taxol to your treatment will change your eventual outcome in the longterm. They have had great results with it with people who have positive lymph nodes (which thankfully I do not), but they have no indication that it makes any difference in node negative patients. There is of course that nagging feeling that maybe one extra drug will make the difference someday. I just don't know, and will never know if that one drug made a difference or not.
I have learned A TON about the chemicals involved in chemo in the last few days. I thank my William & Mary degree for teaching me the value of detailed research. Who knew this liberal arts major would someday wish she had taken more science classes.
On the spiritual side of things, I HAVE to believe that the Lord will not allow me to pursue the option that he has not perfectly laid out for me. I can't exist outside of what he knows is already going to happen. I pray that he will make my decision on this abundantly clear and since He already did that with my surgery, I know it is possible. I have decided to "throw out my fleece" (for those of you who are not sure about that term, I have used it before, but I will let you pursue the Bible, look for Gideon, follow his life story, you will get it.) I have decided to enter the study and hope for the FEC. I honestly believe that God is leading me in this direction. If I am not chosen for the FEC, I can continue with AC or pull out of the study and seek other options. I also have a second opinion scheduled with a Christian Oncologist at the end of July. I am hoping he will shed light on what I have already received consule about.
As a funny side not to all this, we are getting ready for Disney World. As part of that process I have to buy a new swim suit, since none of my old ones that have "built in bras" will work with my current flat-chested silhouette. I can hear a big "Amen" from all my sisters in life out there who know that swim suit shopping is annoying enough, without having to account for covering large scars and finding something without a built in bra. Wish me luck as I continue this pursuit. I am determined to swim while we are in Florida.
Please keep praying for my heart as I let the fear creep in sometimes. I want to feel the Lord's fresh blessings new every morning and not awake to uncertainty and fear of what my future holds. Please pray that my chemo decision would be made for me, by all other options being dismissed. Please pray that our family has the most amazing vacation that restarts our lives of freedom from fear and worry. --Kat
I have had an ongoing dialogue with God about all this since day one. Some days its pleading, some days its frustration, some days its the desperation to experience His peace. The last few days has been a seeking of discernment of the next decisions I have ahead. As funny as it may seem to some, the decision to have a double mastectomy with reconstruction was not difficult for me. Though it was offered, I didn't even consider the lumpectomy. 90% of that is the mental feeling that my breasts were some diseased part of me that I had to be rid of, combined with the feeling that if I could even buy 1-2% odds in my favor that the cancer would not return, I would take it. The next decision in this journey is a little more complicated.
Enter Chemo....I knew I would have chemo all along. It is an age thing and the type of cancer they found. If I were a 65 year old with the same diagnosis, I may have been fine with the surgery. But, at 31, all parties agree that I have a 30% chance that cancer could return in my body in my lifetime, so chemo is a must.
Chemo is not black or white, there are many shades of grey. I assumed I would just opt for the most aggressive option on all fronts and though it would suck for 6 months as I was going through it, it would help me fight better. Well, I am learning it is not that cut and dry. I am offered AC for 4 cycles (21 days apart), or TC for 4 cycles (similar to AC with perhaps less drain on your heart, but may not be quite as aggressive, they just don't know the long term implications) or if I get picked for the magic formula in the randomized study I could get 6 rounds of FEC. This is believed to be the most aggressive of these three options, but again they just don't know 10, 15, 20 years if it is, that's the point of the study. This is the standard of treatment in Europe, so I know its at least as aggressive and I like the possibility it could be more so, even though I will have to endure 2 additional chemo treatments. However, I have no control over whether I get this or AC, its all decided by a computer somewhere. Lastly, there are some people who believe you should be really aggressive and have 4 rounds of AC and 4 rounds of Taxol after. The problem with this is that it is much tougher on your body, heart and long term wear and tear. There is no evidence that supports the idea that adding taxol to your treatment will change your eventual outcome in the longterm. They have had great results with it with people who have positive lymph nodes (which thankfully I do not), but they have no indication that it makes any difference in node negative patients. There is of course that nagging feeling that maybe one extra drug will make the difference someday. I just don't know, and will never know if that one drug made a difference or not.
I have learned A TON about the chemicals involved in chemo in the last few days. I thank my William & Mary degree for teaching me the value of detailed research. Who knew this liberal arts major would someday wish she had taken more science classes.
On the spiritual side of things, I HAVE to believe that the Lord will not allow me to pursue the option that he has not perfectly laid out for me. I can't exist outside of what he knows is already going to happen. I pray that he will make my decision on this abundantly clear and since He already did that with my surgery, I know it is possible. I have decided to "throw out my fleece" (for those of you who are not sure about that term, I have used it before, but I will let you pursue the Bible, look for Gideon, follow his life story, you will get it.) I have decided to enter the study and hope for the FEC. I honestly believe that God is leading me in this direction. If I am not chosen for the FEC, I can continue with AC or pull out of the study and seek other options. I also have a second opinion scheduled with a Christian Oncologist at the end of July. I am hoping he will shed light on what I have already received consule about.
As a funny side not to all this, we are getting ready for Disney World. As part of that process I have to buy a new swim suit, since none of my old ones that have "built in bras" will work with my current flat-chested silhouette. I can hear a big "Amen" from all my sisters in life out there who know that swim suit shopping is annoying enough, without having to account for covering large scars and finding something without a built in bra. Wish me luck as I continue this pursuit. I am determined to swim while we are in Florida.
Please keep praying for my heart as I let the fear creep in sometimes. I want to feel the Lord's fresh blessings new every morning and not awake to uncertainty and fear of what my future holds. Please pray that my chemo decision would be made for me, by all other options being dismissed. Please pray that our family has the most amazing vacation that restarts our lives of freedom from fear and worry. --Kat
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