I know I have been very bad at updating. Truth is, there
hasn't been much to update you on. Which, I suppose, given my history, is
a good thing. :)
The only thing of note is that my CEA has been steadily
increasing. It had leveled out at 9 for a while (or close to it), and
because of that, Dr. K. felt that it would be the opportune time to take me off
the Xeloda (which was causing my platelets, whites and reds to tank a bit) and
see how Erbitux alone would fare.
Unfortunately, it didn't go as well as we had hoped. My CEA
has been on a slow, steady incline over the past 2 months, topping out this week
at 15.7. The good news is that it has been steady over the past two
cycles....16 2 weeks ago, and 15.7 this week. Small victory, but I'll
take what I can get.
Per the plan, I had a CT scan this week, on Monday. It was
awful - the back pain has been increasing again, and although we switched my
meds, it hasn't been enough to fully control the pain. Therefore, I had
to take double doses of my breakthrough meds (these are meds that are meant to
help with spikes in the pain, where long-acting or ER meds are meant to bring
the overall steady level of pain down), and a Valium. No, I didn't drive
myself home.
CT results were on Tuesday, and they were pretty much what I was
expecting. The tumors in my lungs have grown, both in number and in size.
The two that the tech pointed out are: one nodule went from 9mm -
12mm, and the other went from 1.2cm to 1.5cm. Still small, but the fact
that they grew, and that they grew in number is not a good sign.
The
tumors in my liver appear to still be gone, which was a piece of good news.
The tumor in my peritonium (which is the lining
of the abdomen) is still the same size, but the margins are more defined on the
scan. I'm not entirely sure what that means, but there you go.
The team wasn't excited about telling me this information, as you can well guess. Dr. K. was pretty clear about letting me know that there aren't many options left for me, as far as chemotherapy goes. We had three options that we talked about.
1) Continue my current regiment of Erbitux, but add Xeloda back in. There are pros and cons to this. The pro is that it has worked in the past, and it worked well. The con is that it does have a negative effect on my bone marrow, and inhibits my platelets, my white blood cells, and my red blood cells. Dr. K. made it very clear that using this method is, in his words, a stopgap measure.
2) Look at using Stivarga/Regorafenib, which is the only other FDA-approved chemotherapy drug left for me to try. This is an option we have to seriously consider, but there are a lot of cons with this. First, the method that this chemo works on in the body is a similar pathway to Avastin, which I had a massive allergic reaction to last year. This drug also comes with a HUGE list of potential side effects...among them, fatigue, high blood pressure, elevated liver counts, low platelets, anemia, and hand/foot syndrome.
3) Clinical trials. This would obviously be dependent on what was open, what I qualified for, where they were located, etc. There is nothing at CTCA currently, but there may be some things coming down the pike. Additionally, if I do a clinical trial, I have to have what they call a 4-6 week washout period, which means I would have to be off of chemo for that long before I started a clinical trial.
*sigh*
As you can imagine, this appt with my team was not very happy and joyful. It was pretty somber.
The plan for right now is to go back to the Erbitux/Xeloda plan. We are switching my Erbitux treatments to a weekly cycle, and I will be doing a week on/a week off with the Xeloda. They are going to pull my labs on a weekly basis, to see how badly the Xeloda tanks my bone marrow, and make this a very fluid plan. I will be getting Neupogen shots pretty regularly, to keep my numbers where they need to be.
As Dr. K. said, this is just a stopgap. This can't be a permanent plan. My system just isn't going to tolerate it long-term. And, that scares the crap out of me. I tolerate this so well - there aren't many side effects that I affect my everyday living. And, the thought of moving to another, unknown-to-me drug is terrifying.
Then, there's the thought that this is the end of the line, chemotherapy wise. That's a very scary thought. What happens if I get through this treatment, it stops working, and the next drug doesn't work. Do I just keep living life, knowing that I'm on borrowed time (which I honestly already feel like, but it will feel that much more....well, imminent). Do I just sit around and wait to die? That's kind of what I feel like I'm facing. Choices that aren't great, options are decreasing, and I am sitting here, feeling like I'm waiting for the Grim Reaper to peek his ugly head around the corner and tell me, "It's time."
Please don't read this the wrong way - I'm not giving up. More, it's just a stark realization that things aren't looking as good as we'd like them to be, and I am having to face some very serious issues. I have started some conversations with friends about doing what we always said we'd do, but keep putting off for a variety of reasons. I contacted some friends that are spread throughout the country - we keep talking about getting together, doing some wild and crazy things, but life keeps getting in the way. I told them that I didn't want the next and/or last time I see them to be when I am on my deathbed. We have started the process of making plans.
I guess what I'm saying is that I'm trying to take this information, process it, and use it to the best of my ability. I do realize, now more than ever, that my time here is very finite. I want to live until I'm 100, but in all honesty, I am going to be damned lucky to make it to 40. Therefore, I need to stop saying, I want to do this someday. I need to start doing that shit NOW!
Another thing that put this all into perspective is a friend was told she has 6 months to live. She and I are the same age, same cancer, kids are similar ages (though hers are a bit younger), and we are both married. She lives right around the corner from us. We have been spending time with this wonderful family - I'll call her Jane. Jane and I have had some very serious talks about how we want things to go, what we need to do to leave a legacy for our kids, etc. It's disheartening and scary, but so nice to have someone to talk with about this who is in the same boat I am.
Isn't that an odd statement.
Anyway, between watching Jane go though her time, and me knowing that my time is limited - well, it helps push things I want to do to the front of my list. I am not going to live the next (unknown) months/years in fear, living with regrets, wondering "what if I had done XYZ when I felt better". I want to do that stuff now, when it means the most.
So, on that note, I am going to get off the computer, get my kids lunch, and spend some time with a friend this afternoon. I am going to make my family chicken fried rice (Kevin's favorite meal), and I am going to hold my husband's hand as we fall asleep tonight. I am going to tuck my kids into bed, kiss them on their cheeks, and huh them so tight that they complain about it....then, they hug me right back with the same intensity, which is amazing.
I am going to live the freaking HELL out of whatever time I have left on this earth. I am not going to spend the rest of my life feeling sorry for myself, or asking why this had to happen to me, or wondering if I'll ever get to do the things I want to do the most. I am going to teach my kids that, no matter what life throws at you, you can have a wonderful life and fit a lifetime of happiness into a short period of time. I want to be the kind of person that others look to for inspiration as they move forward in their lives. I want to be the person that people talk about long after I'm gone.
Wonder if I can make that happen.
Anywho....I'm off. More later.
The team wasn't excited about telling me this information, as you can well guess. Dr. K. was pretty clear about letting me know that there aren't many options left for me, as far as chemotherapy goes. We had three options that we talked about.
1) Continue my current regiment of Erbitux, but add Xeloda back in. There are pros and cons to this. The pro is that it has worked in the past, and it worked well. The con is that it does have a negative effect on my bone marrow, and inhibits my platelets, my white blood cells, and my red blood cells. Dr. K. made it very clear that using this method is, in his words, a stopgap measure.
2) Look at using Stivarga/Regorafenib, which is the only other FDA-approved chemotherapy drug left for me to try. This is an option we have to seriously consider, but there are a lot of cons with this. First, the method that this chemo works on in the body is a similar pathway to Avastin, which I had a massive allergic reaction to last year. This drug also comes with a HUGE list of potential side effects...among them, fatigue, high blood pressure, elevated liver counts, low platelets, anemia, and hand/foot syndrome.
3) Clinical trials. This would obviously be dependent on what was open, what I qualified for, where they were located, etc. There is nothing at CTCA currently, but there may be some things coming down the pike. Additionally, if I do a clinical trial, I have to have what they call a 4-6 week washout period, which means I would have to be off of chemo for that long before I started a clinical trial.
*sigh*
As you can imagine, this appt with my team was not very happy and joyful. It was pretty somber.
The plan for right now is to go back to the Erbitux/Xeloda plan. We are switching my Erbitux treatments to a weekly cycle, and I will be doing a week on/a week off with the Xeloda. They are going to pull my labs on a weekly basis, to see how badly the Xeloda tanks my bone marrow, and make this a very fluid plan. I will be getting Neupogen shots pretty regularly, to keep my numbers where they need to be.
As Dr. K. said, this is just a stopgap. This can't be a permanent plan. My system just isn't going to tolerate it long-term. And, that scares the crap out of me. I tolerate this so well - there aren't many side effects that I affect my everyday living. And, the thought of moving to another, unknown-to-me drug is terrifying.
Then, there's the thought that this is the end of the line, chemotherapy wise. That's a very scary thought. What happens if I get through this treatment, it stops working, and the next drug doesn't work. Do I just keep living life, knowing that I'm on borrowed time (which I honestly already feel like, but it will feel that much more....well, imminent). Do I just sit around and wait to die? That's kind of what I feel like I'm facing. Choices that aren't great, options are decreasing, and I am sitting here, feeling like I'm waiting for the Grim Reaper to peek his ugly head around the corner and tell me, "It's time."
Please don't read this the wrong way - I'm not giving up. More, it's just a stark realization that things aren't looking as good as we'd like them to be, and I am having to face some very serious issues. I have started some conversations with friends about doing what we always said we'd do, but keep putting off for a variety of reasons. I contacted some friends that are spread throughout the country - we keep talking about getting together, doing some wild and crazy things, but life keeps getting in the way. I told them that I didn't want the next and/or last time I see them to be when I am on my deathbed. We have started the process of making plans.
I guess what I'm saying is that I'm trying to take this information, process it, and use it to the best of my ability. I do realize, now more than ever, that my time here is very finite. I want to live until I'm 100, but in all honesty, I am going to be damned lucky to make it to 40. Therefore, I need to stop saying, I want to do this someday. I need to start doing that shit NOW!
Another thing that put this all into perspective is a friend was told she has 6 months to live. She and I are the same age, same cancer, kids are similar ages (though hers are a bit younger), and we are both married. She lives right around the corner from us. We have been spending time with this wonderful family - I'll call her Jane. Jane and I have had some very serious talks about how we want things to go, what we need to do to leave a legacy for our kids, etc. It's disheartening and scary, but so nice to have someone to talk with about this who is in the same boat I am.
Isn't that an odd statement.
Anyway, between watching Jane go though her time, and me knowing that my time is limited - well, it helps push things I want to do to the front of my list. I am not going to live the next (unknown) months/years in fear, living with regrets, wondering "what if I had done XYZ when I felt better". I want to do that stuff now, when it means the most.
So, on that note, I am going to get off the computer, get my kids lunch, and spend some time with a friend this afternoon. I am going to make my family chicken fried rice (Kevin's favorite meal), and I am going to hold my husband's hand as we fall asleep tonight. I am going to tuck my kids into bed, kiss them on their cheeks, and huh them so tight that they complain about it....then, they hug me right back with the same intensity, which is amazing.
I am going to live the freaking HELL out of whatever time I have left on this earth. I am not going to spend the rest of my life feeling sorry for myself, or asking why this had to happen to me, or wondering if I'll ever get to do the things I want to do the most. I am going to teach my kids that, no matter what life throws at you, you can have a wonderful life and fit a lifetime of happiness into a short period of time. I want to be the kind of person that others look to for inspiration as they move forward in their lives. I want to be the person that people talk about long after I'm gone.
Wonder if I can make that happen.
Anywho....I'm off. More later.
Comments:
I'm
sorry about these results and hope that things turn around. I'm glad you are
intent on spending time your way. Hugs.
July
4, 2014 at 5:27 PM
Teary.
And angry at life and what it has allowed. Not only for you, but for 'Jane' as
well. And countless other mothers etc. This is a cruel world.
July
6, 2014 at 3:49 AM
Since
I met you at the CTCA blogging conference I've been following your experience
because I deeply admired your attitude and "way of being" about your
disease. You seemed both practical and optimistic at once, which as anyone with
metastatic disease knows, is no small accomplishment.
I'm truly sorry for this difficult news. I know you will continue to navigate with grace, good sense and awesome amounts of love.
Wishing you good things,
Jody Schoger
I'm truly sorry for this difficult news. I know you will continue to navigate with grace, good sense and awesome amounts of love.
Wishing you good things,
Jody Schoger
July
6, 2014 at 1:16 PM
I
am so sorry. I had not read your blog for a bit, and last time I read it ,well
things were ok. Do all you can, as quickly as you can. Make memories with your
children. My husband's best friend passed from brain cancer almost two years
ago. We walked with the family, and he made wonderful memories for his kids. I
will keep you in my prayers.
July
24, 2014 at 5:01 PM
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