Well,
last week didn't go as planned. About 25 minutes into chemo, I had
another reaction. This one was all too similar to the one from June, and
Dad and I both saw the signs sooner than before. It started with a
general rise in my overall body temperature (including my ears getting super
red and hot), then the shortness of breath (inability to get a full, deep
breath in) and the feeling of my heart racing started. We immediately
called the nurse over, and I told her to check my vitals. I was nervous that
my symptoms were all phsychosomatic, and that I was bringing them on just out
of fear. Well, unfortunately, I wasn't, and my BP and pulse were way
higher than they should have been.
My nurse immediately shut off the chemo and disconnected me, and they started pumping me full of the anti-reaction drugs (usually steroids) that help. That was in addition to the preventative anti-allergy drugs they had already given me, just as a precaution. They started looking at my blood work (drawing from my port), and luckily, my kidney function was still normal. However, my liver function, specifically my bilirubin, was high, and the next thing I know, I'm admitted.
Luckily, I was able to stay at CTCA for this hospital visit. I didn't need any additional assistance, like I did with the last reaction, and by Saturday morning, my numbers had started to stabilize. They were keeping an eye on my platelets, because those were lower than they wanted. Saturday night, during doctor's rounds, I was told that I'd be going home the next day, as long as my platelets stabilized.
Sunday morning came, and I was ready to go home. But, my hematocrit and hemoglobin were both really low, so I had to stay another day and get two units of blood. I was, needless to say, disappointed (many tears fell that day). I got the blood, had a few visitors, and went to sleep early.
Sunday was particularly hard, too, because I learned that a friend from CTCA who's been battling ovarian cancer passed away. It wasn't a surprise, and it was a welcome relief to know she wasn't in pain any longer, but it still sucks. It's so hard to make friends on this journey, knowing that you are going to inevitably lose some. Jodi was an amazing spirit, devoted to her beliefs and truly a good soul. She will be missed, and my heart goes out to her husband, her family and those that loved her.
Monday morning came around, and I was anxious to get home. The kids needed me. I was bored and tired of being in the hospital. I was ready....like, really ready to go home. My doctor, Dr. K., rounded the hospital around mid-morning. My blood work looked okay, and I was given the discharge paperwork. However, he brought up another topic that was weighing heavily on my mind.
What do we do next?
I have now effectively eliminated all of the main-line treatments used to fight colon cancer. Now what? Well, we started talking about clinical trials. We have broached the topic before, but I never, ever expected that we would be looking into them this soon. I thought of this as something we'd be dealing with years down the road, not months. But, here we are.
Clinical trials are, I've found, a taboo subject. People assume that you use CT's at the end of your life, when you've exhausted all other options. Dr. K. was very, very adamant that this wasn't an end-of-life decision. Rather, the CT's would be used to extend my life as long as possible. He feels very strongly that this is a road I have to look at and consider. He's worked with this particular group before, and feels that their success and research is worth looking into.
It was hard to hear. Knowing that I've only got a few other FDA-approved options available to me (Xeloda, Erbitux and Regorafenib), we need to look at CT options. It was a fairly emotional conversation, but one that helped me make the decision.
I'm going to look into CTs. I have to. I need to research all of my options, and I trust Dr. K. That's the bottom line. If he feels like this is going to give me more time, then I want to learn more, research it, and try it
I'm not ready to go yet. I have too many things to do. My kids and my husband need me.
Levi and I had a pretty difficult heart-to-heart discussion a few weeks ago. The jist of it was that he wanted me to know that it was okay to stop treatment, if and when I get to that point. Basically, he hates seeing me sick, going through treatment, and not having a good quality of life. This was right after I got out of the hospital in June, and my suffering was fresh in his mind. I understood where he was coming from, and we talked about a lot of different options. I told him that, right now, the good outweighs the bad. I have some bad times, but, generally, I have more good times than bad. And, as long as those scales are tipped that way, I'll keep fighting. If and when the tables turn, and I'm down and out more than I'm living life, we'll talk about changing and/or ending treatment. It's so scary to think about having to make those decisions.
I hate that my family and I have to go through this. I hate seeing the fear in my kids' eyes as they walk into my hospital room. I hate having to answer the questions about the tubes, the medicines, the pills. I hate having my son ask me "Are you finally feeling better, Mommy?" It breaks my heart. But, I feel like I have to keep doing this, so that I can be here to answer those questions. So that I can be here to see them grow up, as long as I can be here.
Every single decision I make is with my kids in mind. I want to be here as long as possible, for them. Yes, I want to be here for my husband and my parents and my brothers and their families. I want to be here to celebrate with friends and family. But, most of all, I want to be here for my kids. It's not fair that I won't be here as long as I want to be here. I understand that. It's awful to think of the things that I might miss. Will I be here to see them graduate from high school? Will I be able to help my daughter pick out her wedding dress, or be there as my son puts the band on his new wife's finger? Will I be there to welcome their children?
Those are questions that no one knows the answers to. But, I have to try to get there. I am trying to live each day in a way that the kids will remember me well, regardless of how long I'm here. I want them to remember the small things, like how I kiss them before bed each night, or how I call them by their nicknames, or how I stroke their hair and hold them close each day. The big things are okay, but I want them to know how much I love them, and that I live for them.
I want to live my life in a way that will make my husband proud, that will make him remember how very much I love him. Our story is long, and twisted, and full of happy and sad times. I want to make more of those happy times. I want him to know how much I love that he reaches for my hand each night as we lay in bed. I want him to know that his smile lights up my heart and makes me grateful for each day with him.
There are so many things I want my parents, my brothers, my nieces to know.
So, I'll look into clinical trials.
And, with that, I'm off to do something ordinary. I'm going to make dinner. And, I'll make my kids laugh.
Yeah. That's a fabulous goal for the night.
My nurse immediately shut off the chemo and disconnected me, and they started pumping me full of the anti-reaction drugs (usually steroids) that help. That was in addition to the preventative anti-allergy drugs they had already given me, just as a precaution. They started looking at my blood work (drawing from my port), and luckily, my kidney function was still normal. However, my liver function, specifically my bilirubin, was high, and the next thing I know, I'm admitted.
Luckily, I was able to stay at CTCA for this hospital visit. I didn't need any additional assistance, like I did with the last reaction, and by Saturday morning, my numbers had started to stabilize. They were keeping an eye on my platelets, because those were lower than they wanted. Saturday night, during doctor's rounds, I was told that I'd be going home the next day, as long as my platelets stabilized.
Sunday morning came, and I was ready to go home. But, my hematocrit and hemoglobin were both really low, so I had to stay another day and get two units of blood. I was, needless to say, disappointed (many tears fell that day). I got the blood, had a few visitors, and went to sleep early.
Sunday was particularly hard, too, because I learned that a friend from CTCA who's been battling ovarian cancer passed away. It wasn't a surprise, and it was a welcome relief to know she wasn't in pain any longer, but it still sucks. It's so hard to make friends on this journey, knowing that you are going to inevitably lose some. Jodi was an amazing spirit, devoted to her beliefs and truly a good soul. She will be missed, and my heart goes out to her husband, her family and those that loved her.
Monday morning came around, and I was anxious to get home. The kids needed me. I was bored and tired of being in the hospital. I was ready....like, really ready to go home. My doctor, Dr. K., rounded the hospital around mid-morning. My blood work looked okay, and I was given the discharge paperwork. However, he brought up another topic that was weighing heavily on my mind.
What do we do next?
I have now effectively eliminated all of the main-line treatments used to fight colon cancer. Now what? Well, we started talking about clinical trials. We have broached the topic before, but I never, ever expected that we would be looking into them this soon. I thought of this as something we'd be dealing with years down the road, not months. But, here we are.
Clinical trials are, I've found, a taboo subject. People assume that you use CT's at the end of your life, when you've exhausted all other options. Dr. K. was very, very adamant that this wasn't an end-of-life decision. Rather, the CT's would be used to extend my life as long as possible. He feels very strongly that this is a road I have to look at and consider. He's worked with this particular group before, and feels that their success and research is worth looking into.
It was hard to hear. Knowing that I've only got a few other FDA-approved options available to me (Xeloda, Erbitux and Regorafenib), we need to look at CT options. It was a fairly emotional conversation, but one that helped me make the decision.
I'm going to look into CTs. I have to. I need to research all of my options, and I trust Dr. K. That's the bottom line. If he feels like this is going to give me more time, then I want to learn more, research it, and try it
I'm not ready to go yet. I have too many things to do. My kids and my husband need me.
Levi and I had a pretty difficult heart-to-heart discussion a few weeks ago. The jist of it was that he wanted me to know that it was okay to stop treatment, if and when I get to that point. Basically, he hates seeing me sick, going through treatment, and not having a good quality of life. This was right after I got out of the hospital in June, and my suffering was fresh in his mind. I understood where he was coming from, and we talked about a lot of different options. I told him that, right now, the good outweighs the bad. I have some bad times, but, generally, I have more good times than bad. And, as long as those scales are tipped that way, I'll keep fighting. If and when the tables turn, and I'm down and out more than I'm living life, we'll talk about changing and/or ending treatment. It's so scary to think about having to make those decisions.
I hate that my family and I have to go through this. I hate seeing the fear in my kids' eyes as they walk into my hospital room. I hate having to answer the questions about the tubes, the medicines, the pills. I hate having my son ask me "Are you finally feeling better, Mommy?" It breaks my heart. But, I feel like I have to keep doing this, so that I can be here to answer those questions. So that I can be here to see them grow up, as long as I can be here.
Every single decision I make is with my kids in mind. I want to be here as long as possible, for them. Yes, I want to be here for my husband and my parents and my brothers and their families. I want to be here to celebrate with friends and family. But, most of all, I want to be here for my kids. It's not fair that I won't be here as long as I want to be here. I understand that. It's awful to think of the things that I might miss. Will I be here to see them graduate from high school? Will I be able to help my daughter pick out her wedding dress, or be there as my son puts the band on his new wife's finger? Will I be there to welcome their children?
Those are questions that no one knows the answers to. But, I have to try to get there. I am trying to live each day in a way that the kids will remember me well, regardless of how long I'm here. I want them to remember the small things, like how I kiss them before bed each night, or how I call them by their nicknames, or how I stroke their hair and hold them close each day. The big things are okay, but I want them to know how much I love them, and that I live for them.
I want to live my life in a way that will make my husband proud, that will make him remember how very much I love him. Our story is long, and twisted, and full of happy and sad times. I want to make more of those happy times. I want him to know how much I love that he reaches for my hand each night as we lay in bed. I want him to know that his smile lights up my heart and makes me grateful for each day with him.
There are so many things I want my parents, my brothers, my nieces to know.
So, I'll look into clinical trials.
And, with that, I'm off to do something ordinary. I'm going to make dinner. And, I'll make my kids laugh.
Yeah. That's a fabulous goal for the night.
Comments:
kristinbednarz said...
Hang
in there Michelle! I'm cheering for you!!! Many hugs today and other days!!!!
August
6, 2013 at 5:58 PM
I
know you trust your doctor, but I trust *you* Michelle. You're a highly
intelligent, highly stubborn woman. DO NOT DOUBT. It's not allowed. Period. End
of story. Yea, I know, reality and all.
Reality is, YOU GOT THIS.
Reality is, YOU GOT THIS.
August
6, 2013 at 6:42 PM
Lyndakwade said...
By
no means are clinical trials equal to end or last ditch effort. Don't ever
think that way. I have survivors in my life for whom clinical trials were first
line treatments for their illness. My husband mike (your uncle Jim's son) who
works in the field looks at trials as choosing the most current, cutting edge
treatment available. Also because of the way clinical trials are funded, you
will be followed very very closely. Everything must be done according to
protocol or they lose their funding. This could be a very positive step.
Nancy keeps us all updated and I'm so glad she shared your blog. I've known of your story for a long time now. My heart hurts for you. From one young mom to another I don't know how you do it and where your strength comes from but I really admire it. I'm amazed by it. ii truly can't imagine it.
Many prayers for continued strength, success and that you will beat this forever! All our best. Lynda & mike wade
Nancy keeps us all updated and I'm so glad she shared your blog. I've known of your story for a long time now. My heart hurts for you. From one young mom to another I don't know how you do it and where your strength comes from but I really admire it. I'm amazed by it. ii truly can't imagine it.
Many prayers for continued strength, success and that you will beat this forever! All our best. Lynda & mike wade
August
6, 2013 at 8:44 PM
Lyndakwade said...
By
no means are clinical trials equal to end or last ditch effort. Don't ever
think that way. I have survivors in my life for whom clinical trials were first
line treatments for their illness. My husband mike (your uncle Jim's son) who
works in the field looks at trials as choosing the most current, cutting edge
treatment available. Also because of the way clinical trials are funded, you
will be followed very very closely. Everything must be done according to
protocol or they lose their funding. This could be a very positive step.
Nancy keeps us all updated and I'm so glad she shared your blog. I've known of your story for a long time now. My heart hurts for you. From one young mom to another I don't know how you do it and where your strength comes from but I really admire it. I'm amazed by it. ii truly can't imagine it.
Many prayers for continued strength, success and that you will beat this forever! All our best. Lynda & mike wade
Nancy keeps us all updated and I'm so glad she shared your blog. I've known of your story for a long time now. My heart hurts for you. From one young mom to another I don't know how you do it and where your strength comes from but I really admire it. I'm amazed by it. ii truly can't imagine it.
Many prayers for continued strength, success and that you will beat this forever! All our best. Lynda & mike wade
August
6, 2013 at 8:44 PM
Stay
strong Michelle...you and your family our in my thoughts and prayers!! Many
hugs to you!!
December
11, 2013 at 11:43 AM
No comments:
Post a Comment