Ah -
Saturday. Woke up this morning with minimal nausea, so I consider that a
mark in the win column. LOL!
As you saw, Wednesday didn't go quite as planned. Once I got home from the second trip to the onco, I was exhausted. A short nap and nausea meds, for sure. My dear friend Karena brought over dinner (chili and cornbread - YUM!), which was amazingly helpful. I will definitely be asking for more help with meals - having that taken care of made all the difference. I was able to function normally with the kids that night, which helped us all.
Thursday was an early morning back to the onco office, after we dropped the kids off at school. We got called into the financial office and were hit with the numbers. Don't let anyone ever tell you that chemotherapy is cheap - my one drug is around $400 each time. Another drug is well over a grand per use, and the Neulasta shot will be around $600 per use. Needless to say, hitting my $8000 max out-of-pocket isn't an issue. *sigh* We got that figured out, and we went into the chemo room.
I hate the chemo room. I know I shouldn't, since it helps me and it will give me my life back, but I hate it. I hate the smell of the office. It makes me nauseous. I hate the chairs we have to sit in, the IV poles, the fact that everyone in there is older than me. I hate that people look at me with pity when I'm in there, especially when they hear it's my second go-round with cancer. I don't want pity. I want to smile and laugh and LIVE. I don't feel like I can do that in there.
Anyways, we got to chemo and got hooked up with the Avastin. I had a conversation with the nurse about my concerns - everyone keeps assuming that, since we went through chemo almost four years ago, that we know what's going to happen. I had to stop her and explain that I have willingly and purposefully forgotten everything I learned during that time frame. That doesn't even take into account what's leaked out of my brain as a result of chemo brain. :) So, we had a discussion about side effects, the differences between Folfox (previous chemo) and Folfiri (this chemo), etc. I was glad we had the discussion, but upset that we had to initiate it.
I had them give me a full dose of Ativan before they started the Avastin - the Ativan is an anti-anxiety medicine that also has anti-nausea properties. I was super-nauseous before we walked in there, so I knew that this was a necessity. Needless to say, I fell asleep (one of the great things about Ativan), and actually woke myself up snoring in the chemo room. Embarrassing, but at least I wasn't nauseous. :)
We were out of there by 10:30 or so, and headed home. My dad dropped me off at my house so I could sleep some more, and he went back to his place to greet my brother Bob, my SIL Ashley, and my niece Bella. Yeah for family visitors! I went over there a bit later, before I grabbed the kids from daycare for their parent/teacher conferences. Those went well (of course - my kids are amazing...), and off we went back to Mom and Dad's house for dinner with (some of the) whole family.
Yesterday brought with it more nausea in the morning, but some iced coffee (so odd) and toast helped. We took the kids to the Wildlife World Zoo here in West Valley. It was fun - tiring, but fun! While there, I started to notice some sores in my mouth. So much for no side effects from this chemo. When we got home from the zoo, I called the oncologists office to try to get a script for the mouthwash that helps with mouth sores. What a debacle that was.
Getting in touch with a chemo nurse is a treat. Leave a message and wait for a call back. Then, they called in script. Perfect - except, when I got to Walgreens, the pharmacist told me that one of the ingredients of the compound is no longer made. Really? After much discussion between the pharmacist and the nurses (and some bitchiness on both sides), we finally got the ingredients settled. Basically, the nurses kept saying that the pharmacy could just use my script from four years ago (really?), which they couldn't because a) they only keep records for 18 months, and b) one of the ingredients is no longer made. I can't be the only person in this four year time frame to have asked for this "miracle mouthwash". How have they not run across this issue before? Luckily, the pharmacist was willing to stick up for me, and fought to make sure I got what I needed. He said that the nurses at chemo were bitchy and mean, and he decided that he would be a jerk back to make sure I got this ASAP. Thankfully, he was able to compound the mouthwash and I was on my way.
I think what bothers me most is that I have to fight to get answers and to get my script. If I call the drs office, I shouldn't have to go through a bodyguard (aka, pharmacist) to get what I need. And, even though I went through this four years ago, I still need help with this. This is all still new to me. I know it's not new to them, but to me, this is all new territory. And, to have someone keep acting like it's a pain in the ass to them to give me answers makes me feel like I should start looking elsewhere.
And, that brings me to the next piece of news. With the help of my amazing friends, I have started the process of changing doctors. Nothing is complete yet, but we are in the process of getting the new facility the medical paperwork. The new place is called Cancer Treatment Centers of America (CTCA), and is one of the foremost leaders in treating advanced cancers. The local facility is in Goodyear, which is closer to our house than the current doctor's office. I'll go into their facility more in detail in a future posting (especially once we get more information from them). Right now, I'll say that I have had personal experience with this facility (it's where my friend Kim was treated), and I know of several other colon cancer patients that have been/are being treated there. It's where I told my family that I wanted to be if my cancer ever came back. My friend Amy did some research for me, and got me enough information that it was worth pursuing this facility. Long story short, the financial impact is the same whether we stay at the current facility or go to CTCA. I firmly believe that the treatment I'm going to get at CTCA is going to be much more complete and personalized, and right now, that's what I need.
We have meetings with them next week - they will be going back to my original diagnosis to look at all of the tests, including a potential rediagnosis if needed. They are going to look at my case completely and totally, and we will be working with not only an oncology team, but a nutritionist, naturopath, mind/body therapist, and others to give me a complete, whole body treatment plan, rather than just dealing with the cancer. I am so excited about this! I'm especially excited about the nutritionist, b/c I've forgotten to eat in the past couple of days, and that had a big impact on how I felt. My eating habits have changed just in the past couple of days (my tastes are completely different), and I know it's not good for me.
Anyways, now that this post is way longer than I intended, I'll say that I have more hope today than I did a week ago. I'm excited about this new possibility for treatment, and I'm so glad that I have this opportunity. Don't get me wrong - cancer still sucks, and I wish I wasn't dealing with this. But, with the help of my friends and family, I'm going to absolutely and completely beat this. I WILL be one of the stage 4 survivors!
Boo-yah!
As you saw, Wednesday didn't go quite as planned. Once I got home from the second trip to the onco, I was exhausted. A short nap and nausea meds, for sure. My dear friend Karena brought over dinner (chili and cornbread - YUM!), which was amazingly helpful. I will definitely be asking for more help with meals - having that taken care of made all the difference. I was able to function normally with the kids that night, which helped us all.
Thursday was an early morning back to the onco office, after we dropped the kids off at school. We got called into the financial office and were hit with the numbers. Don't let anyone ever tell you that chemotherapy is cheap - my one drug is around $400 each time. Another drug is well over a grand per use, and the Neulasta shot will be around $600 per use. Needless to say, hitting my $8000 max out-of-pocket isn't an issue. *sigh* We got that figured out, and we went into the chemo room.
I hate the chemo room. I know I shouldn't, since it helps me and it will give me my life back, but I hate it. I hate the smell of the office. It makes me nauseous. I hate the chairs we have to sit in, the IV poles, the fact that everyone in there is older than me. I hate that people look at me with pity when I'm in there, especially when they hear it's my second go-round with cancer. I don't want pity. I want to smile and laugh and LIVE. I don't feel like I can do that in there.
Anyways, we got to chemo and got hooked up with the Avastin. I had a conversation with the nurse about my concerns - everyone keeps assuming that, since we went through chemo almost four years ago, that we know what's going to happen. I had to stop her and explain that I have willingly and purposefully forgotten everything I learned during that time frame. That doesn't even take into account what's leaked out of my brain as a result of chemo brain. :) So, we had a discussion about side effects, the differences between Folfox (previous chemo) and Folfiri (this chemo), etc. I was glad we had the discussion, but upset that we had to initiate it.
I had them give me a full dose of Ativan before they started the Avastin - the Ativan is an anti-anxiety medicine that also has anti-nausea properties. I was super-nauseous before we walked in there, so I knew that this was a necessity. Needless to say, I fell asleep (one of the great things about Ativan), and actually woke myself up snoring in the chemo room. Embarrassing, but at least I wasn't nauseous. :)
We were out of there by 10:30 or so, and headed home. My dad dropped me off at my house so I could sleep some more, and he went back to his place to greet my brother Bob, my SIL Ashley, and my niece Bella. Yeah for family visitors! I went over there a bit later, before I grabbed the kids from daycare for their parent/teacher conferences. Those went well (of course - my kids are amazing...), and off we went back to Mom and Dad's house for dinner with (some of the) whole family.
Yesterday brought with it more nausea in the morning, but some iced coffee (so odd) and toast helped. We took the kids to the Wildlife World Zoo here in West Valley. It was fun - tiring, but fun! While there, I started to notice some sores in my mouth. So much for no side effects from this chemo. When we got home from the zoo, I called the oncologists office to try to get a script for the mouthwash that helps with mouth sores. What a debacle that was.
Getting in touch with a chemo nurse is a treat. Leave a message and wait for a call back. Then, they called in script. Perfect - except, when I got to Walgreens, the pharmacist told me that one of the ingredients of the compound is no longer made. Really? After much discussion between the pharmacist and the nurses (and some bitchiness on both sides), we finally got the ingredients settled. Basically, the nurses kept saying that the pharmacy could just use my script from four years ago (really?), which they couldn't because a) they only keep records for 18 months, and b) one of the ingredients is no longer made. I can't be the only person in this four year time frame to have asked for this "miracle mouthwash". How have they not run across this issue before? Luckily, the pharmacist was willing to stick up for me, and fought to make sure I got what I needed. He said that the nurses at chemo were bitchy and mean, and he decided that he would be a jerk back to make sure I got this ASAP. Thankfully, he was able to compound the mouthwash and I was on my way.
I think what bothers me most is that I have to fight to get answers and to get my script. If I call the drs office, I shouldn't have to go through a bodyguard (aka, pharmacist) to get what I need. And, even though I went through this four years ago, I still need help with this. This is all still new to me. I know it's not new to them, but to me, this is all new territory. And, to have someone keep acting like it's a pain in the ass to them to give me answers makes me feel like I should start looking elsewhere.
And, that brings me to the next piece of news. With the help of my amazing friends, I have started the process of changing doctors. Nothing is complete yet, but we are in the process of getting the new facility the medical paperwork. The new place is called Cancer Treatment Centers of America (CTCA), and is one of the foremost leaders in treating advanced cancers. The local facility is in Goodyear, which is closer to our house than the current doctor's office. I'll go into their facility more in detail in a future posting (especially once we get more information from them). Right now, I'll say that I have had personal experience with this facility (it's where my friend Kim was treated), and I know of several other colon cancer patients that have been/are being treated there. It's where I told my family that I wanted to be if my cancer ever came back. My friend Amy did some research for me, and got me enough information that it was worth pursuing this facility. Long story short, the financial impact is the same whether we stay at the current facility or go to CTCA. I firmly believe that the treatment I'm going to get at CTCA is going to be much more complete and personalized, and right now, that's what I need.
We have meetings with them next week - they will be going back to my original diagnosis to look at all of the tests, including a potential rediagnosis if needed. They are going to look at my case completely and totally, and we will be working with not only an oncology team, but a nutritionist, naturopath, mind/body therapist, and others to give me a complete, whole body treatment plan, rather than just dealing with the cancer. I am so excited about this! I'm especially excited about the nutritionist, b/c I've forgotten to eat in the past couple of days, and that had a big impact on how I felt. My eating habits have changed just in the past couple of days (my tastes are completely different), and I know it's not good for me.
Anyways, now that this post is way longer than I intended, I'll say that I have more hope today than I did a week ago. I'm excited about this new possibility for treatment, and I'm so glad that I have this opportunity. Don't get me wrong - cancer still sucks, and I wish I wasn't dealing with this. But, with the help of my friends and family, I'm going to absolutely and completely beat this. I WILL be one of the stage 4 survivors!
Boo-yah!
Comments:
Amie said...
That
is such great news about CTCA!! Sometimes, getting a second perspective is just
what is needed - two eyes are better than one to look at your case and what you
need to beat this!!! I am so excited about the whole body treatment - that is
so cool and I love using all those modalities together!!! Love you! Let us know
how it goes!
March
31, 2012 at 9:30 AM
Yay
for whole body treatment! Just what you need! Love you and the family is
praying for you!
March
31, 2012 at 9:42 AM
Sorry
you have had to deal with such crap. It's so hard to deal with all that other
stuff when you should just be concentrating on your health. You have a
wonderful support system to help you--what a blessing!! Hope you can get into
CTCA and get the care you really need!
March
31, 2012 at 10:24 AM
papadragon said...
CTCA
IS AWESOME! Theirs is a comprehensive program not only for you but things for
the family as well. They aren't stuck on "this is the only thing that
works" cookie cutter treatment, they will and do explore many traditional
as well as non traditional therapies, and come up with a winning combination
for your unique needs.... Add compassion and understanding to the mix and you
have an awesome team.... I think the best part of it is that they include you,
the patient, and give you some responsibility for your treatment, a level of
control you dont have at other treatment facilities....
April
1, 2012 at 4:31 PM
I'm
Canadian and I've heard for the CTCA! That is amazing. Reading about your
mouthwash debacle made *me* crazy...fill a four year old script...really? Gotta
hate it when common sense is in short supply!
April
2, 2012 at 4:57 AM
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