I went to my first support group today and everyone had stage IV breast cancer. I had the newest diagnosis and two of the women were diagnosed over 10 years ago. I was also reminded by an old friend woes mom fought it for 10 years with so much courage. All these people give me hope and strength. They all were excited about my stories of CTCA. They couldn't get over that Travis was so included, that my doctor spent over an hour with us, that i have his cell phone number, and that several of my side affects are already better including my energy just from supplements.
Although i will have this forever, so do people who have diabetes. I think the thing that is so frustrating is the days i feel good i get so excited that i might be "normal" again. Then i have my bad days and dread that this could be forever. It is difficult to get into a routine. For example, I can't just run 26 miles when I feel like it. I have to keep up with a schedule so i don't hurt myself. So if i miss three weeks of running, i cant just pick up where i left off and that is very frustrating. I am working on being flexible with myself, but cancer is getting in my way.
As for that pathology report...apparently Emory never did the tests on my biopsy to see if i was actually her2 and er/per. So my doc at CTCA he order that tissue be sent to him and they are going to do the tests themselves. Very frustrating.
We are on our way to a comedy show tonight to support a new friend that we met at CTCA. He is an attorney and a comic, funny in itself.
Thursday, January 22, 2009
Friday, January 16, 2009
Last Day
We have had an incredible week. We met so many people that have similar stories of doctors that don't give them all the info, aren't willing to do the tests they want or even worse is how their issues are just dismissed. It is extremely frustrating to hear so many people that get screwed by the system. That is why i am so glad we decided to come. Dr. Citrin said that what we have been doing is correct. He tapped on my liver, measured it, and did blood work and said it was all positive. They will do a PET scan in a few weeks and I will come back up here the end of February to get my results. Then we will really know how well everything is working. If not he has two studies going on i could try.
The naturopath has been my saving grace. She gave me several supplements to help boost my immune system, increase iron, D and B6, help my guts function better, and two that will help with my hand/foot issues. I love that everyone here has multiple degrees. My doc has a MD and PhD, the naturopathy is one of 6 in the nation that is an oncologist/naturopath, the CEO has a MD, PhD, and MBA. Even the mind/body person has her PhD.
The really weird thing that happened to us yesterday is that our doc here cant find from either of the hospitals in Atlanta if i am actually Her2 + and I have been told this entire time that i am estrogen -. The report he received from Emory is that i am estrogen +. He is eagerly trying to track down these results since this would change my course of action. The report stated that they "ASSUMED" that i was Her2 + and that is what really concerned my doc here. Emory still has tissue on file encased in wax to retest if need be, but a little disconcerting. These are the kind of stories we have heard over and over from patients here. "This is crazy, this is crazy." If you don't know this quote, you should really see Vacation a few hundred times.
If you haven't guessed, we decided not to go into Chicago today due to the sub degree temps. Just walking across the street is almost unbearable. Our boogers froze in our noses, our ears under our hats were freezing and my eye balls were stinging from the cold. These people are crazy to live here and the Flemings (my other family), you are all crazy to have lived in MN for 10 years. I really do not know how you did it. We are going stir crazy after one week. Michigan Ave will have to wait until our next trip. Sammy wanted me to take pictures of the American Girl store here, but i am not sure hypothermia is worth it.
One last note... we spoke to the insurance company to see if they would make CTCA in-network and they said no but I could go to their "Centers of Excellent" instead. These include Sloan Kettering, Moffitt, Mayo, Northwestern, etc. and i finally said all the people at CTCA have been been to these places and are now here. I know there are other great cancer centers, but this is the only one i have found that integrates alternative medicine by licenced doctors and where they all work together. Before i sat down with three different people yesterday, they had already heard about the "missing file." I was also held up in Dr. Citrin's office due to the confusion of the "missing file" and the nurse called my next three appointments to let them know i could be late. I saw the next doctor one hour after my scheduled time and she still made time to see me. I love that.
I will have to tell you the rest when i get home. We are off to qigong.
Love to you all,
Laura
The naturopath has been my saving grace. She gave me several supplements to help boost my immune system, increase iron, D and B6, help my guts function better, and two that will help with my hand/foot issues. I love that everyone here has multiple degrees. My doc has a MD and PhD, the naturopathy is one of 6 in the nation that is an oncologist/naturopath, the CEO has a MD, PhD, and MBA. Even the mind/body person has her PhD.
The really weird thing that happened to us yesterday is that our doc here cant find from either of the hospitals in Atlanta if i am actually Her2 + and I have been told this entire time that i am estrogen -. The report he received from Emory is that i am estrogen +. He is eagerly trying to track down these results since this would change my course of action. The report stated that they "ASSUMED" that i was Her2 + and that is what really concerned my doc here. Emory still has tissue on file encased in wax to retest if need be, but a little disconcerting. These are the kind of stories we have heard over and over from patients here. "This is crazy, this is crazy." If you don't know this quote, you should really see Vacation a few hundred times.
If you haven't guessed, we decided not to go into Chicago today due to the sub degree temps. Just walking across the street is almost unbearable. Our boogers froze in our noses, our ears under our hats were freezing and my eye balls were stinging from the cold. These people are crazy to live here and the Flemings (my other family), you are all crazy to have lived in MN for 10 years. I really do not know how you did it. We are going stir crazy after one week. Michigan Ave will have to wait until our next trip. Sammy wanted me to take pictures of the American Girl store here, but i am not sure hypothermia is worth it.
One last note... we spoke to the insurance company to see if they would make CTCA in-network and they said no but I could go to their "Centers of Excellent" instead. These include Sloan Kettering, Moffitt, Mayo, Northwestern, etc. and i finally said all the people at CTCA have been been to these places and are now here. I know there are other great cancer centers, but this is the only one i have found that integrates alternative medicine by licenced doctors and where they all work together. Before i sat down with three different people yesterday, they had already heard about the "missing file." I was also held up in Dr. Citrin's office due to the confusion of the "missing file" and the nurse called my next three appointments to let them know i could be late. I saw the next doctor one hour after my scheduled time and she still made time to see me. I love that.
I will have to tell you the rest when i get home. We are off to qigong.
Love to you all,
Laura
Thursday, January 15, 2009
Wednesday, January 14, 2009
CTCA Day 3
Holy Cold! Right now it is 7 and feels like -9. Tomorrow's high is 1. Good thing we are not outside at all.
Some hiccups have happened in our visit regarding it being an out of network facility. We have been talking to United Healthcare and the hospital constantly for the last two days to figure out exactly what our out of pocket expenses are going to be. So in the meantime we had all the tests cancelled, which is not that big of a deal since we really needed to wait another month (the end of 3 cycles of Xeloda) in order to see if the chemo is working. We might also be getting all the tests done in Atlanta and bringing the scans up with us. They are working with us a ton.
That said, we have continued to be impressed with every aspect of this hospital. Yesterday we met with the Naturopath, who prescribes vitamins and mineral supplements to increase the absorption of the chemo and help the organs recover faster as well as helping with the side effects. One thing we learned that really upset us was the Xeloda is supposed to come with B6 in order to help with the hand and foot cracking, this was not even mentioned to us by our doctor in Atlanta. Simple stuff that should not be overlooked in our opinion. But that is why we are trying to make this hospital work with our insurance. We even had the doctor we met with the first day catch up to us in line at the cafeteria to find out how everything was going. Not sure that happens at other facilities...at least in our experience at Emory and Northside.
Getting ready to go out to dinner, I think in Kenosha. Laura is pooped since we have been going 100 mph this whole week. Tomorrow is the big day when we meet with everyone to get specific treatment options from the oncologist, nutritionist, and naturopath in conjunction with each other.
Talk tomorrow, ya, you betcha! (think fargo)
Some hiccups have happened in our visit regarding it being an out of network facility. We have been talking to United Healthcare and the hospital constantly for the last two days to figure out exactly what our out of pocket expenses are going to be. So in the meantime we had all the tests cancelled, which is not that big of a deal since we really needed to wait another month (the end of 3 cycles of Xeloda) in order to see if the chemo is working. We might also be getting all the tests done in Atlanta and bringing the scans up with us. They are working with us a ton.
That said, we have continued to be impressed with every aspect of this hospital. Yesterday we met with the Naturopath, who prescribes vitamins and mineral supplements to increase the absorption of the chemo and help the organs recover faster as well as helping with the side effects. One thing we learned that really upset us was the Xeloda is supposed to come with B6 in order to help with the hand and foot cracking, this was not even mentioned to us by our doctor in Atlanta. Simple stuff that should not be overlooked in our opinion. But that is why we are trying to make this hospital work with our insurance. We even had the doctor we met with the first day catch up to us in line at the cafeteria to find out how everything was going. Not sure that happens at other facilities...at least in our experience at Emory and Northside.
Getting ready to go out to dinner, I think in Kenosha. Laura is pooped since we have been going 100 mph this whole week. Tomorrow is the big day when we meet with everyone to get specific treatment options from the oncologist, nutritionist, and naturopath in conjunction with each other.
Talk tomorrow, ya, you betcha! (think fargo)
Monday, January 12, 2009
CTCA Day 1
Alright, this is Laura's understudy writing for her while she is getting a ton of tests. Got into Chicago last night and had some confusion with the limo so we ended up sharing another limo with two other people who were each on their second visit to CTCA. They both boasted about the care they were getting, one even saying his doctor came in on Christmas day to check on him after surgery. Funny part is he said he was from the Palm Beach area and when I told him I was too he clammed up. We nicknamed him Salty. The woman in the limo we nicknamed Chatty for obvious reasons. Snow drifts everywhere and it was cold!
We got here this morning and started with the registration, orientation, nurse assessment, initial doctor consultation, and a partridge in a pear tree. We started getting frustrated since we were getting a little lost in the shuffle. Just got out of a meeting with our Nurse Navigator Consultant (which by the way, everyone has a title, I guess so we know who exactly we should be talking to, might be easier than "you need to talk to his nurse..." that we get at Emory all the time, but we will see) and we feel much more at ease with the process going forward. In about an hour Laura is getting a bone scan to assure that the cancer has not moved into her bones. The rest of the schedule is as follows:
Tomorrow: Mind Body appt/Nutritionist appt/Group Orientation/Pastoral Care appt/Naturopathy appt/PET Scan
Wed: CT Scan/NM MUGA Scan then we have the afternoon off
Thurs: Massage(for two...nice!)/Reiki Therapy/FIRST TIME WE SEE THE ONCOLOGIST with a plan of attack for treatment/Exit meeting with Internal Medicine Doctor/Nurse Navigator Appt/Some Naturopathy appt we are not sure when though.
Friday: Site-seeing in Chicago/Deep Dish Pizza/Michigan Avenue
So now we know the plan and are going to have to see the results of all the scans and tests and see what treatment plan the doctor here would recommend. The chemo really wont change since Her2neu+ breast cancer only has 2 options, Herceptin and Tykerb. So it will be interesting to hear how the additional treatments will be incorporated.
We also met with the financial advisor and are going to follow up with her later. They may have misinterpreted our insurance maximums, etc., sooooooo stay tuned. Could be good news.
Anyway, we appreciate everyone's thoughts and prayers so much. There is supposed to be a blizzard tonight and 2-5 inches of snow and 35mph winds. We asked if the roads would be closed and they laughed. In Atlanta the entire city would be shut down for 3 days!! Welcome to the north!
We got here this morning and started with the registration, orientation, nurse assessment, initial doctor consultation, and a partridge in a pear tree. We started getting frustrated since we were getting a little lost in the shuffle. Just got out of a meeting with our Nurse Navigator Consultant (which by the way, everyone has a title, I guess so we know who exactly we should be talking to, might be easier than "you need to talk to his nurse..." that we get at Emory all the time, but we will see) and we feel much more at ease with the process going forward. In about an hour Laura is getting a bone scan to assure that the cancer has not moved into her bones. The rest of the schedule is as follows:
Tomorrow: Mind Body appt/Nutritionist appt/Group Orientation/Pastoral Care appt/Naturopathy appt/PET Scan
Wed: CT Scan/NM MUGA Scan then we have the afternoon off
Thurs: Massage(for two...nice!)/Reiki Therapy/FIRST TIME WE SEE THE ONCOLOGIST with a plan of attack for treatment/Exit meeting with Internal Medicine Doctor/Nurse Navigator Appt/Some Naturopathy appt we are not sure when though.
Friday: Site-seeing in Chicago/Deep Dish Pizza/Michigan Avenue
So now we know the plan and are going to have to see the results of all the scans and tests and see what treatment plan the doctor here would recommend. The chemo really wont change since Her2neu+ breast cancer only has 2 options, Herceptin and Tykerb. So it will be interesting to hear how the additional treatments will be incorporated.
We also met with the financial advisor and are going to follow up with her later. They may have misinterpreted our insurance maximums, etc., sooooooo stay tuned. Could be good news.
Anyway, we appreciate everyone's thoughts and prayers so much. There is supposed to be a blizzard tonight and 2-5 inches of snow and 35mph winds. We asked if the roads would be closed and they laughed. In Atlanta the entire city would be shut down for 3 days!! Welcome to the north!
Wednesday, January 7, 2009
Better Day
I always feel so much better after i vent; thanks for listening. Gavin was so much fun today and Sammy had two friends over. The laughter always lifts my spirits. I had to relinquish my duties as leader of my marathon group and that makes me mad. I was really hoping to run the Breast Cancer Marathon in Jax, Fl on Valentines Day, but another opportunity missed. I find myself saying this phrase a lot these days, "Maybe next year " and hoping there will be another year.
I picked up my chemo drugs yesterday and had to pay $3000. That was a little shocking, but now our in-network deductible has been met. Now we just have to worry about the out of network cost. We have to pay 20% of everything including a $7000 deductible. It is kind of scary to think 20% of my $6000 chemo drugs per month is $1200. That doesn't include any testing or doctor visits. My PET scans are $6000 each and MRI's usually run $3000 unless they scan my brain again at a higher resolution. Then the cost multiplies and i haven't even see that bill yet. Needless to say that this is one of our concerns for Chicago since it is out of network. We are hoping we can do most of our stuff here so it will be in-network such as my drugs. Travis also spoke with the benefits person at work and she has been extremely helpful. She informed us that our policy has a life time coverage of $5,000,000 instead of $1,000,000. This makes us feel so much better since i have already used up $550,000. Thank goodness for insurance.
I have had so many nice emails from people i haven't spoken to in quite a while. Novak you totally made my day. Tanya and Teil I loved my flowers. Trishie and the Flemings, your generosity made me cry. The food from all our neighbors is awesome and the overwhelming support for sitters and lunches for the kids is incredible. Thank you so much everyone. It means so much to all of us to know you all care about us. When this is all said and done i want Sammy and Gavin to read all that you have done and realize how loved we all are.
A request... I was hoping to make a book for the kids of the cards and emails you have sent and was hoping to include memories of me that you all have. If you could email me a story, a funny, a memory, etc. that would be so great. I may have to have a PG 13 or R rating on some, but those are the ones i love the best.
Any who as Mrs. Fleming always says...
Hugs and Kisses
I picked up my chemo drugs yesterday and had to pay $3000. That was a little shocking, but now our in-network deductible has been met. Now we just have to worry about the out of network cost. We have to pay 20% of everything including a $7000 deductible. It is kind of scary to think 20% of my $6000 chemo drugs per month is $1200. That doesn't include any testing or doctor visits. My PET scans are $6000 each and MRI's usually run $3000 unless they scan my brain again at a higher resolution. Then the cost multiplies and i haven't even see that bill yet. Needless to say that this is one of our concerns for Chicago since it is out of network. We are hoping we can do most of our stuff here so it will be in-network such as my drugs. Travis also spoke with the benefits person at work and she has been extremely helpful. She informed us that our policy has a life time coverage of $5,000,000 instead of $1,000,000. This makes us feel so much better since i have already used up $550,000. Thank goodness for insurance.
I have had so many nice emails from people i haven't spoken to in quite a while. Novak you totally made my day. Tanya and Teil I loved my flowers. Trishie and the Flemings, your generosity made me cry. The food from all our neighbors is awesome and the overwhelming support for sitters and lunches for the kids is incredible. Thank you so much everyone. It means so much to all of us to know you all care about us. When this is all said and done i want Sammy and Gavin to read all that you have done and realize how loved we all are.
A request... I was hoping to make a book for the kids of the cards and emails you have sent and was hoping to include memories of me that you all have. If you could email me a story, a funny, a memory, etc. that would be so great. I may have to have a PG 13 or R rating on some, but those are the ones i love the best.
Any who as Mrs. Fleming always says...
Hugs and Kisses
Tuesday, January 6, 2009
RAT in a CAGE
Today is not a good day. I feel so freakin isolated i want to scream. I don't even know who or what i am anymore. I have no energy to do anything. Eating isn't even fun since it just makes me run to the bathroom or nauseous. All i want to do is have fun with my kids and then they wake up and i cant wait for Gavin to take his nap. He is so precious and i am missing everything.
My rash is so bad know that i have multiple bruises all over my legs because i am scratching so much. Ssince i cant sleep from all the itching i have been taking sleep meds that then make it difficult to get up in the morning or work out. Then i drag all day and it all starts again. My husband in his typical manly way tries to fix the problem and gives me his useful advice, "then just stop scratching." If i had more energy i might have punched him. He is trying so hard to support me, but doesn't understand all i am going thru. When i get upset he takes it personally, retreats, and tries to solve the problem. None is helpful, but then i have no idea what he is going thru either.
I am like a walking time bomb and no one knows when or why it will go off. Not sure if it is the meds, depression, or every ting else. Sammy is so frustrated with me and I used to be so sympathetic with her. Now all i do is snap at everyone. I just want to escape from everyone and everything, but at the same time be with everyone i love, especially Travis and the kids. If we could just take a month long vaca to an island with a nanny who will play with Gavin and we could watch.
I want to have an identity again. I cant tell you one thing i do anymore besides sleep, shit, and scratch and the sad thing is there is no end this time. If Chicago isn't the miracle i am hoping for than this is my life and so far it sucks. The best day i have had in a long time was shopping with a gift card all by myself the day after Christmas or reading what funny thing Temple wrote on my blog for the day. How sad it that, no offence Temp.
I could keep writing forever about my issues, but i think i am running out of space.
Sincerely,
The itchy RAT
My rash is so bad know that i have multiple bruises all over my legs because i am scratching so much. Ssince i cant sleep from all the itching i have been taking sleep meds that then make it difficult to get up in the morning or work out. Then i drag all day and it all starts again. My husband in his typical manly way tries to fix the problem and gives me his useful advice, "then just stop scratching." If i had more energy i might have punched him. He is trying so hard to support me, but doesn't understand all i am going thru. When i get upset he takes it personally, retreats, and tries to solve the problem. None is helpful, but then i have no idea what he is going thru either.
I am like a walking time bomb and no one knows when or why it will go off. Not sure if it is the meds, depression, or every ting else. Sammy is so frustrated with me and I used to be so sympathetic with her. Now all i do is snap at everyone. I just want to escape from everyone and everything, but at the same time be with everyone i love, especially Travis and the kids. If we could just take a month long vaca to an island with a nanny who will play with Gavin and we could watch.
I want to have an identity again. I cant tell you one thing i do anymore besides sleep, shit, and scratch and the sad thing is there is no end this time. If Chicago isn't the miracle i am hoping for than this is my life and so far it sucks. The best day i have had in a long time was shopping with a gift card all by myself the day after Christmas or reading what funny thing Temple wrote on my blog for the day. How sad it that, no offence Temp.
I could keep writing forever about my issues, but i think i am running out of space.
Sincerely,
The itchy RAT
Thursday, January 1, 2009
TMI
On Monday the 22nd i developed a UTI. The first meds didn't work, so after several uncomfortable days they finally put me on penicillin. Both meds multiplied the effects of my chemo drugs and have caused such severe diarrhea that my back went into spasms. Then because of the 29 pills and all their side effects, i woke up Christmas morning vomiting at 4 AM. This woke the entire family up so we decided to start opening gifts at 5:30. I slept most of the day, but had fun watching the kids open gifts for 3 hours from the couch. The rest of the week i have been recovering and letting my mother-in-law take good care of me. It was also nice to have Travis home for the entire week. We are sad to see him go back tomorrow. Hope everyone had a great Christmas.
We leave for Chicago on the 11th and are very excited. This is the first time anyone has been willing to take care of our kids since Gavin was born, so Travis and i are so excited to have a week to sleep in, be together, and get some great info from new doctors. Please keep us in our prayers
We leave for Chicago on the 11th and are very excited. This is the first time anyone has been willing to take care of our kids since Gavin was born, so Travis and i are so excited to have a week to sleep in, be together, and get some great info from new doctors. Please keep us in our prayers
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