As Cancer is a life and death sort of disease - it brings about a LOT of strong opinions. And now with our country's entry into a new world of healthcare, opinions are running rampant. I am quite saddened that fight against cancer is getting lost in political rhetoric. Mainly I am speaking of the debate on Avastin that is being waged right now. Genentech is appealing the ruling of the FDA to remove Avastin as a protocol for women with breast cancer.
This is where the 'death panel' arguments come in against Obama from the right and the left takes the bait, taking our eyes off of the real issue. It is being argued that Avastin is being pulled simply because of cost. But the REAL argument is - "Is this a good idea for women with breast cancer?"
Regardless of the cost, is this treatment a good treatment for women with breast cancer? In my case, it is. When I started to take the drug I was told that the average time before the cancer started to progress was 10 months. 10 MONTHS!!!!! My son was barely 2 when I was re-diagnosed. I was just hoping to make it to his 3rd birthday. I have been taking Avastin for 2.5 years and it is still working. I hope that it continues to work. I beat out the average time to onset, so I am hoping that I am a "super responder" - someone who continues to respond very well to the treatment.
Not all breast cancer patients respond this well to Avastin. As I mentioned before; 10 months is the average before progression of the cancer. The other measurement is life expectancy. If a woman takes Avastin for metastatic breast cancer she has a 20% chance of living another 5 years. This is the same with a woman with metastatic disease undergoing normal chemotherapy treatment. I have to tell you, I would MUCH rather be on Avastin for 5 years than on anything else. At least I have hair, a decent amount of energy and zero nausea. 5 years of on and off regular chemo treatments sounds horrible to me. But not all breast cancer patients have the ability to take Avastin because it just didn't work for them.
So the arguments at this point should not be, should we keep Avastin for not, it should be, why are some people responding VERY well to this treatment? We know that cancer is different in each person and we are discovering more variables that we can treat. I feel like with each variable that is uncovered it is another step closer to a cure or prevention.
The real argument is not Obama-care or any politics. It is - Does the drug work to treat Breast Cancer? Yes it does, albeit in a very small percentage of the population. Let's find out WHY this is working on some people, and not at all in others. I'd like to make it to my son's wedding.
Monday, January 31, 2011
Thursday, January 20, 2011
Disability Continues....
I actually started to create an excel document to track my progress with all of the different companies that I was contacting. After a while, I also added comments like "does not look legit", "not a current number", and "broken links-can't contact". I think that this might be an area where the government could save some money. What a mess...
I did get a call back from ONE company. I had a very enlightening conversation with a lovely lady named Pam. According to her, "Maximus is working on the problem [of the legitimate companies]." I hope so! After the conversation with her, I am going to set up a meeting with Social Security. I read all the documentation on the Maximus website - even took the mini tests during the training and got a 100%. Even so, Pam and I have different comprehension of how the Ticket to Work program works. Since this is her job. I am guessing that she is right. But I think I need to talk to Social Security as they are the one that holds the contract with Maximus. And ultimately, I personally answer to Social Security.
Just a preview for the next couple of posts - I'll be chatting about nutrition, and Avastin.
I did get a call back from ONE company. I had a very enlightening conversation with a lovely lady named Pam. According to her, "Maximus is working on the problem [of the legitimate companies]." I hope so! After the conversation with her, I am going to set up a meeting with Social Security. I read all the documentation on the Maximus website - even took the mini tests during the training and got a 100%. Even so, Pam and I have different comprehension of how the Ticket to Work program works. Since this is her job. I am guessing that she is right. But I think I need to talk to Social Security as they are the one that holds the contract with Maximus. And ultimately, I personally answer to Social Security.
Just a preview for the next couple of posts - I'll be chatting about nutrition, and Avastin.
Wednesday, January 12, 2011
A Foray into the world of Disability - Ticket to Work
In March it became abundantly clear that working was not option for me and I would have to go on long term disability. I'll write about that decision making process another time. It has been almost a year since I have been on disability. I finally qualified for Social Security back in October. Along with qualifying for Social Security I also qualified for the "Ticket to Work" program. They literally sent me a big postcard Ticket. So Willy Wonka. Four months later, I have finally decided to take a look into this program. This is a little long, but bear with me.
Maybe I am incredibly judgmental, or maybe I just have high expectations. But I have not been impressed so far in my short journey figuring out the Ticket to Work program.
How many steps should this take, and how many different people should I talk to for this to be effective? The first thing I did was flip through the pamphlet that came with my Ticket. It told me to go to the website for valuable information. I also notice that there was a company "MAXIMUS, Inc." that I need to call to get started. Interesting.... a third party handles all of this? Why don't I have any information from them being sent to me then?
Let's go back to my two options at this point - go to the website for Social Security or call Maximus. I did check the website and got some more information. I decided to Google Maximus before calling them. (I like to know exactly to whom I am talking). I found a website for them, apparently Maximus is aptly named. It appears to be rather large in size, handling a ton of different services for the government. I looked at more info on their website going over the Ticket to Work program. They don't have much info online geared toward the beneficiaries like me. Their barebones, ancient looking website for Ticket to Work, was targeted at getting more EN's signed up. Oh sorry, jumped into the government world there for a second. EN's are yet another group that I have to deal with at some point. These are Employment Networks. It has an entire paragraph about them on my golden ticket.
I found a list of these EN's on the Maximus website. I typed in my city and state to reach EN's that work with my area. It also states that the list will show other locations that have agreed to work in my area. Interesting, so the one that is clearly geared to Florida is really going to be able to support me all the way here in Indiana? I am already not very impressed. Then I start to click on a few here and there just to see what they are like. Hmmm, broken link to the state page for Indiana Vocational Rehabilitation Services, along with a few other EN's that are listed. A couple of the sites don't even seem legitimate. I'm not forking over $30K for them to help me develop my own business! These folks don't even have a decent website. Ugh, ok enough of this, let's call someone.
Hello Maximus. I finally call the number that was in the pamphlet to get started. After a while of ringing, a man who, of course, barely speaks english. And to boot, he can't seem to talk into the receiver and keeps cutting out. I know that a lot of people complain about folks not speaking english, but maybe they only have a little accent, get over it. Enjoy the accents of non-native english speakers. But, I draw the line, when they cannot speak english well. I think that the individual that I spoke to, had a limited comprehension of english as well. He took the normal information from me. And then asked me what I wanted. This kind of surprised me, as this is the number "To Get Started" with the vocational services. It should be clear what I want, right? I decided to play nice - "I need to get started with the Ticket To Work Program," I tell him nicely. And this is where we go down hill. He has a script that he is obviously reading from, hastily. I stop him from time to time to clarify what he is saying as he is mostly unintelligible. I also interjected when he got to the EN's, with "Some of those on the list do not look reliable." He just continued on, either not comprehending what I said, or ignoring.
In the end, it appears that I have to call EACH one of the EN's and decide which one is going to suit me best. I found 6 in my city out of a list of 61 that apparently work in my area. I have to find one that matches the services that I require and one that suits my disability. Seriously, a very basic drop down menu would be wonderful here.
Let's see what tomorrow brings. That's when I will start the phone calls.
Maybe I am incredibly judgmental, or maybe I just have high expectations. But I have not been impressed so far in my short journey figuring out the Ticket to Work program.
How many steps should this take, and how many different people should I talk to for this to be effective? The first thing I did was flip through the pamphlet that came with my Ticket. It told me to go to the website for valuable information. I also notice that there was a company "MAXIMUS, Inc." that I need to call to get started. Interesting.... a third party handles all of this? Why don't I have any information from them being sent to me then?
Let's go back to my two options at this point - go to the website for Social Security or call Maximus. I did check the website and got some more information. I decided to Google Maximus before calling them. (I like to know exactly to whom I am talking). I found a website for them, apparently Maximus is aptly named. It appears to be rather large in size, handling a ton of different services for the government. I looked at more info on their website going over the Ticket to Work program. They don't have much info online geared toward the beneficiaries like me. Their barebones, ancient looking website for Ticket to Work, was targeted at getting more EN's signed up. Oh sorry, jumped into the government world there for a second. EN's are yet another group that I have to deal with at some point. These are Employment Networks. It has an entire paragraph about them on my golden ticket.
I found a list of these EN's on the Maximus website. I typed in my city and state to reach EN's that work with my area. It also states that the list will show other locations that have agreed to work in my area. Interesting, so the one that is clearly geared to Florida is really going to be able to support me all the way here in Indiana? I am already not very impressed. Then I start to click on a few here and there just to see what they are like. Hmmm, broken link to the state page for Indiana Vocational Rehabilitation Services, along with a few other EN's that are listed. A couple of the sites don't even seem legitimate. I'm not forking over $30K for them to help me develop my own business! These folks don't even have a decent website. Ugh, ok enough of this, let's call someone.
Hello Maximus. I finally call the number that was in the pamphlet to get started. After a while of ringing, a man who, of course, barely speaks english. And to boot, he can't seem to talk into the receiver and keeps cutting out. I know that a lot of people complain about folks not speaking english, but maybe they only have a little accent, get over it. Enjoy the accents of non-native english speakers. But, I draw the line, when they cannot speak english well. I think that the individual that I spoke to, had a limited comprehension of english as well. He took the normal information from me. And then asked me what I wanted. This kind of surprised me, as this is the number "To Get Started" with the vocational services. It should be clear what I want, right? I decided to play nice - "I need to get started with the Ticket To Work Program," I tell him nicely. And this is where we go down hill. He has a script that he is obviously reading from, hastily. I stop him from time to time to clarify what he is saying as he is mostly unintelligible. I also interjected when he got to the EN's, with "Some of those on the list do not look reliable." He just continued on, either not comprehending what I said, or ignoring.
In the end, it appears that I have to call EACH one of the EN's and decide which one is going to suit me best. I found 6 in my city out of a list of 61 that apparently work in my area. I have to find one that matches the services that I require and one that suits my disability. Seriously, a very basic drop down menu would be wonderful here.
Let's see what tomorrow brings. That's when I will start the phone calls.
Monday, January 10, 2011
An introduction.... Again.
I would first like to introduce all of you to my story. I was originally diagnosed with breast cancer in September of 2001. Yes, a month and year that was horrible for many. Not only did monumental buildings fall that September along with our feelings of safety and security, but my own private world toppled as well. I found that I had breast cancer in my right breast. I was only 24 years old, had just celebrated my second wedding anniversary and was in a job that had me running full tilt. Babies were next in my future, not cancer.
Over the next few years I was the poster child for Herceptin. A new drug at the time to treat the dreaded Her2Neu version of breast cancer. Aggressive and hard to treat, a Her2Neu diagnosis is NOT what you want to hear. I responded well to cutting edge treatment, now a standard in treating this particular type of cancer. Part of my story is included in a Lifetime Television documentary "Fighting for our Future." This documented the unique struggle that young women have with breast cancer. And at the time, it was quite unknown that young women can and do get breast cancer. There is also a book with the same title that I highly recommend for anyone diagnosed with breast cancer. Both the documentary and the book cover several women with different stories.
Unfortunately, my story with cancer continues. I went all the way to 2009 - cancer free. By all accounts, I should not have had a recurrence. I had passed all the milestones. I had a great appointment with my doctor, Dr. Miller, in October 2008. We discussed children, we both have boys around the same age. Everything looked great. When she went to leave the room and turned and said - "This is the way it is suppose to go." Two months later I felt a lump and knew exactly what it was. It was just before Christmas. I didn't tell anyone. Why ruin a perfectly fine Christmas when I knew we had a hard battle in front of us. Right after Christmas I went in to the doctor and had a needle biopsy.
My phone rang the next day. I didn't even need to look at the number. I knew who it was and what they were going to say. I immediately got up in the middle of a meeting and left. I tried to find my friend while I was on the phone talking to the doctor who performed the procedure.
I'll skip the details for now. I'll save the rest for another post. But suffice to say - I am on track with another cutting edge treatment and I am hoping for the best. Part of my therapy and dealing with this disease is to talk about it. I want to let other's know that they are not alone.
Over the next few years I was the poster child for Herceptin. A new drug at the time to treat the dreaded Her2Neu version of breast cancer. Aggressive and hard to treat, a Her2Neu diagnosis is NOT what you want to hear. I responded well to cutting edge treatment, now a standard in treating this particular type of cancer. Part of my story is included in a Lifetime Television documentary "Fighting for our Future." This documented the unique struggle that young women have with breast cancer. And at the time, it was quite unknown that young women can and do get breast cancer. There is also a book with the same title that I highly recommend for anyone diagnosed with breast cancer. Both the documentary and the book cover several women with different stories.
Unfortunately, my story with cancer continues. I went all the way to 2009 - cancer free. By all accounts, I should not have had a recurrence. I had passed all the milestones. I had a great appointment with my doctor, Dr. Miller, in October 2008. We discussed children, we both have boys around the same age. Everything looked great. When she went to leave the room and turned and said - "This is the way it is suppose to go." Two months later I felt a lump and knew exactly what it was. It was just before Christmas. I didn't tell anyone. Why ruin a perfectly fine Christmas when I knew we had a hard battle in front of us. Right after Christmas I went in to the doctor and had a needle biopsy.
My phone rang the next day. I didn't even need to look at the number. I knew who it was and what they were going to say. I immediately got up in the middle of a meeting and left. I tried to find my friend while I was on the phone talking to the doctor who performed the procedure.
I'll skip the details for now. I'll save the rest for another post. But suffice to say - I am on track with another cutting edge treatment and I am hoping for the best. Part of my therapy and dealing with this disease is to talk about it. I want to let other's know that they are not alone.
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