Well,
today is the day I'll find out what options, if any, I have in front of me.
I go to T-Gen (the
clinical trials group) this afternoon, and we'll have more information. I
just made the mistake of looking on their website at the open clinical trials
for colon cancer, and there is only one open, which I don't qualify for.
I'm hoping there are other options that aren't on the site.
I'm nervous. It helps to say it. This almost feels like when I was first diagnosed - I am going into a doctor's appointment to talk about something I'm not familiar with, and I know they are going to throw terms, acronyms, big words, etc. at me. It helps to accept that I'm going to be lost.
The difference this time around, though? I'm prepared for it. I'm a stronger, more empowered patient. I know to ask them to stop, repeat what they said, bring it on down to laymen's terms, and then ask more questions about what I don't understand. I'm more informed about my cancer in general, and I know what my body can or can't handle.
I also had a bit of reassurance from Dr. K. yesterday. I happened to run into him at CTCA, and told him that the appointment with T-Gen was today. He grinned and said "I know..." That grin made me feel at peace. This is what I need to be doing. I truly believe that he wouldn't send me someplace that he didn't honestly, truly feel wasn't going to benefit me.
So, we'll see what happens. I'm spending some time this morning reviewing the many pages of materials I've found (many thanks to some wonderful people on facebook support groups), and trying to understand what questions I might need to ask. I've already printed out several pages of "Clinical Trial Questions" from a variety of well-respected cancer websites, and I'm just planning to bring them all along, read through them once the doctor gives me time for Q&A, and see what happens.
And, in case I miss something, I'm going to bring my fully-charged phone and record the entire conversation. That way, I can go back later and listen to what he had to say, make notes, form more questions, etc. I think it's going to help me a lot, since I know I'm going to be completely overwhelmed and utterly lost after today's appointment.
********************************************************
Physically, I'm doing better. I'm still fighting fatigue, but it's no where near as bad as it was, say, a month ago. OT and PT are definitely helping, and I'm loving the fact that, even though it's not burpees or push-ups from the medicine ball or high-intensity training (all things I did with my trainer before this re-diagnosis), I'm doing *something* to make my body stronger, healthier, etc. It helps, physically and emotionally.
Re: my last post and my bitchy attitude, I'm doing better. Venting here always helps, and I did a little retail therapy (mama needed a new purse). I also have a goal regarding some advocacy things I'm working towards, which is still in the cancer realm but allows me to know that what I'm going through isn't for nothing. If I can help one person, it makes it all worth while.
I'm also going to start working on a few DIY projects that I've planned for and are still sitting, waiting on me. I also have been on pinterest like a crazy woman, looking at recipes, Halloween projects, etc. Hey - I just realized, I could also start working on my Undy 5000 shirt design, costumes, posters, etc. Hmmmm.....seems like Hobby Lobby and I are going to be good friends.
I think it's important to recognize and understand emotions that seem to come from nowhere (like bitchiness, especially when you're normally fairly bitch-free). Recognizing them, thinking about what caused them, and then doing something about it is essential to getting through any obstacle life throws at you, including cancer. For me, I've chosen to use the energy that I do have for positive things. I spend time with the kids, Levi and my parents. I try to carve out time for friends, as much as possible. I've made a conscious decision to (most of the time) use what energy I have on positive endeavors, and to quit complaining. To me, it's just not worth the energy I could put into complaining, asking "why me", and moaning about how hard my life is.
My life is difficult, but first-world-problems difficult. I have a roof over my head, food on the table and in the pantry, friends and family that I can count on, a loving husband, great kids....seriously, what do I have to complain about? Right now, I feel stronger than I have in a while, and I'm going to use the energy that I do have for good things.
Anyways, I wanted my readers (whom I adore) to know that it's okay to have your bitch moment, but that it's also okay to do something for yourself to put the bitch away.
And, my bitch? She's gone for now. But, when she pops back up, I'll try to tame the shrew. :)
I'm nervous. It helps to say it. This almost feels like when I was first diagnosed - I am going into a doctor's appointment to talk about something I'm not familiar with, and I know they are going to throw terms, acronyms, big words, etc. at me. It helps to accept that I'm going to be lost.
The difference this time around, though? I'm prepared for it. I'm a stronger, more empowered patient. I know to ask them to stop, repeat what they said, bring it on down to laymen's terms, and then ask more questions about what I don't understand. I'm more informed about my cancer in general, and I know what my body can or can't handle.
I also had a bit of reassurance from Dr. K. yesterday. I happened to run into him at CTCA, and told him that the appointment with T-Gen was today. He grinned and said "I know..." That grin made me feel at peace. This is what I need to be doing. I truly believe that he wouldn't send me someplace that he didn't honestly, truly feel wasn't going to benefit me.
So, we'll see what happens. I'm spending some time this morning reviewing the many pages of materials I've found (many thanks to some wonderful people on facebook support groups), and trying to understand what questions I might need to ask. I've already printed out several pages of "Clinical Trial Questions" from a variety of well-respected cancer websites, and I'm just planning to bring them all along, read through them once the doctor gives me time for Q&A, and see what happens.
And, in case I miss something, I'm going to bring my fully-charged phone and record the entire conversation. That way, I can go back later and listen to what he had to say, make notes, form more questions, etc. I think it's going to help me a lot, since I know I'm going to be completely overwhelmed and utterly lost after today's appointment.
********************************************************
Physically, I'm doing better. I'm still fighting fatigue, but it's no where near as bad as it was, say, a month ago. OT and PT are definitely helping, and I'm loving the fact that, even though it's not burpees or push-ups from the medicine ball or high-intensity training (all things I did with my trainer before this re-diagnosis), I'm doing *something* to make my body stronger, healthier, etc. It helps, physically and emotionally.
Re: my last post and my bitchy attitude, I'm doing better. Venting here always helps, and I did a little retail therapy (mama needed a new purse). I also have a goal regarding some advocacy things I'm working towards, which is still in the cancer realm but allows me to know that what I'm going through isn't for nothing. If I can help one person, it makes it all worth while.
I'm also going to start working on a few DIY projects that I've planned for and are still sitting, waiting on me. I also have been on pinterest like a crazy woman, looking at recipes, Halloween projects, etc. Hey - I just realized, I could also start working on my Undy 5000 shirt design, costumes, posters, etc. Hmmmm.....seems like Hobby Lobby and I are going to be good friends.
I think it's important to recognize and understand emotions that seem to come from nowhere (like bitchiness, especially when you're normally fairly bitch-free). Recognizing them, thinking about what caused them, and then doing something about it is essential to getting through any obstacle life throws at you, including cancer. For me, I've chosen to use the energy that I do have for positive things. I spend time with the kids, Levi and my parents. I try to carve out time for friends, as much as possible. I've made a conscious decision to (most of the time) use what energy I have on positive endeavors, and to quit complaining. To me, it's just not worth the energy I could put into complaining, asking "why me", and moaning about how hard my life is.
My life is difficult, but first-world-problems difficult. I have a roof over my head, food on the table and in the pantry, friends and family that I can count on, a loving husband, great kids....seriously, what do I have to complain about? Right now, I feel stronger than I have in a while, and I'm going to use the energy that I do have for good things.
Anyways, I wanted my readers (whom I adore) to know that it's okay to have your bitch moment, but that it's also okay to do something for yourself to put the bitch away.
And, my bitch? She's gone for now. But, when she pops back up, I'll try to tame the shrew. :)
Comments:
Joan
Bardee said...
bitch
away. whatever helps. i hope your appointment today went well.
August
21, 2013 at 2:01 PM
Keep
the fight going. I'm from Singapore and my CEA started from 692 and went down
to 3.4 and up to 4.9 most recently. I'm on standard drugs for now, with the 3
you have mentioned
-erbidux (k-ras wild, not mutated)
-oxalinplatin
-port 5FU.
Trust in God. Only He can heal.
-erbidux (k-ras wild, not mutated)
-oxalinplatin
-port 5FU.
Trust in God. Only He can heal.
August
26, 2013 at 1:44 PM
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