There is not a whole lot to report. Yesterday was my first infusion without getting the Oxaliplatin. That cut 2 hours off the infusion time which was super nice. And because I had been getting so sick the past few times they drugged me up really well with anti nausea drugs before we got started and that seemed to work pretty well. I was a bit loopy in the head and probably couldn't have passed a sobriety test, but I had Kevin there to help me to the car. :-) I am a bit nauseous and can't seem to keep any drugs down, but there is nothing else in my tummy so I can't do too much damage. I will probably just go today without eating much and see what tomorrow brings. All in all I would say this round is better than the last couple.
I didn't get to see my doctor so I don't know anything more about the body scan I had last time. Next time I go I will see the nurse and she can probably read us the radiologist's report.
Some really bad news came on Wednesday when we got a letter saying we did not receive the hospital Charity Care, which we were really hoping for as that would relieve us of the pressure of paying for all of these bills. There is still some hope, however. Kevin called the number they gave us to appeal and when the woman looked at our case she was shocked that we were denied and said she would have to speak with someone else to get more information. Maybe with a second review they will realize we are worthy candidates and grant us the Charity Care. We have also not heard from Medicaid yet so there is still some hope there as well. And finally, Kevin found out about a program at the hospital if we are denied the Charity Care again that we can apply for. It is a one time forgiveness of 80% of your bills. Given how generous all of you, our wonderful friends have been, we could probably work out a deal for paying 20%. I am still hopeful that one way or another this can still work out.
But, in the meantime, I am still going strong. I am walking or riding my bike most days. Now that it is warming up I am hoping to get out more and build enough strength to go on a backpacking trip this summer. And of course the Tobacco Trail is calling my name and I have to try and do my 30 mile doughnut run. While it is a bummer I only have half the weekends to have fun, I am filling up those weekends with many adventures and living life to the fullest. Most of the time I feel great and who can ask for more? Thank you for your continued support. It really does make all of the difference. I am so lucky to have such wonderful people in my life.
Friday, March 27, 2015
Thursday, March 12, 2015
Good News....and bad.
I am in my chemo chair now, having just visited with the doctor, and I figured I would try to get this done before I get sick. :-) The anticipatory nausea is beginning to settle in but I think I can keep that at bay for a bit longer.
First the good news. I had a CT scan today and it looks great. My lungs are looking much healthier, one of the lymph nodes that was affected has disappeared (it isn't lit up so that means the cancer doesn't appear to be active there.) and while the scan hasn't been read by the radiologist yet, just looking at the scan shows that everything is going in the right direction.
The bad news, first of all, I gained 13 lbs!! Where in the world did that come from? At least my clothes all still fit me...of course, my doctor wasn't upset about that at all. Keeping weight on for cancer patients is a good thing. But my goodness, that didn't make me happy.
The other thing that didn't make me happy is learning that my chemotherapy is never going to end. I thought it was just a 12 week cycle and that after that I would at least get a break and maybe I could go onto the clinical trial or who knows what, but something different. But, two weeks after treatment #12 I will have treatment #13 and then 14 and on and on for the rest of my life. But, there is some good news to go with that. Today will be the last time I get the Oxaliplatin. It is the drug that makes me cold sensitive. Now I am going to have to use pure will power to stay away from the ice cream. But not having that drug will definitely make a difference in how I feel and will also make my chemotherapy go quicker on the days that I come in. Then, after my next scan in 3 months, if it looks good then I will be taken off of the Irinotecan. That is one drug that makes me very sick and is also the main culprit that causes hair loss so if I can get rid of that drug my hair can start growing back again. At that point I will just be on the flourouracil which is the one I have to wear the pump for. The side effects for that are pretty minimal and life should seem pretty normal at that point.
All in all, I know I can be grateful. Better to keep going and reduce the amount of drugs that I have to take than to get the break I was hoping for and then start all over again with the drug regiment that I started with. So I guess I just need to readjust my thinking from "when I reach the end of chemo" to "when I only have to take one chemo drug."
My doctor said that she is still incredibly impressed with how well I have done on the three drugs. She said I am a poster child for this therapy. I think they really should make a poster with me and then pay me for it!! :-) (Just kidding.) I have much to be thankful for. Thank you for all of your prayers and support.
First the good news. I had a CT scan today and it looks great. My lungs are looking much healthier, one of the lymph nodes that was affected has disappeared (it isn't lit up so that means the cancer doesn't appear to be active there.) and while the scan hasn't been read by the radiologist yet, just looking at the scan shows that everything is going in the right direction.
The bad news, first of all, I gained 13 lbs!! Where in the world did that come from? At least my clothes all still fit me...of course, my doctor wasn't upset about that at all. Keeping weight on for cancer patients is a good thing. But my goodness, that didn't make me happy.
The other thing that didn't make me happy is learning that my chemotherapy is never going to end. I thought it was just a 12 week cycle and that after that I would at least get a break and maybe I could go onto the clinical trial or who knows what, but something different. But, two weeks after treatment #12 I will have treatment #13 and then 14 and on and on for the rest of my life. But, there is some good news to go with that. Today will be the last time I get the Oxaliplatin. It is the drug that makes me cold sensitive. Now I am going to have to use pure will power to stay away from the ice cream. But not having that drug will definitely make a difference in how I feel and will also make my chemotherapy go quicker on the days that I come in. Then, after my next scan in 3 months, if it looks good then I will be taken off of the Irinotecan. That is one drug that makes me very sick and is also the main culprit that causes hair loss so if I can get rid of that drug my hair can start growing back again. At that point I will just be on the flourouracil which is the one I have to wear the pump for. The side effects for that are pretty minimal and life should seem pretty normal at that point.
All in all, I know I can be grateful. Better to keep going and reduce the amount of drugs that I have to take than to get the break I was hoping for and then start all over again with the drug regiment that I started with. So I guess I just need to readjust my thinking from "when I reach the end of chemo" to "when I only have to take one chemo drug."
My doctor said that she is still incredibly impressed with how well I have done on the three drugs. She said I am a poster child for this therapy. I think they really should make a poster with me and then pay me for it!! :-) (Just kidding.) I have much to be thankful for. Thank you for all of your prayers and support.
Tuesday, March 3, 2015
Carolina Week
Last week's edition of Carolina Week did contain the story about chemotherapy that I had mentioned. Here is a link: http://carolinaweek.org/ The episode that is posted there now is the correct one but will be replaced tomorrow with a new edition. (Sorry I didn't check it earlier.) The story starts at 13 min. 37 sec. into the program, if you don't want to watch the whole thing. You don't actually see any part of me at all, it is just the footage they show of the chemotherapy being administered is being given to me. That is my dose of Irinotecan you see on the screen. (That is drug #1 of my little biweekly cocktail.)
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