What a 20 years this has been!
4 weeks ago
Saturday, May 31, 2008
Interesting Website, Interesting Lady!
I accidently found this website "The Assertive Patient" about a woman with cancer who supports actively advocating for yourself. I'm browsing it now, but I like what I've seen so far. Go Girl! :)
Wednesday, May 28, 2008
Cancer Survivor Day is Sunday June 1, 2008
I didn't know there was such a day! Thanks to http://www.ncsdf.org/
Celebrate National Cancer Survivors Day® on Sunday, June 1, 2008
CONTACT: PAULA CHADWELL
Celebrate National Cancer Survivors Day® on Sunday, June 1, 2008
On Sunday, June 1, hundreds of communities throughout the United States, Canada, and other participating countries will observe the 21st annual National Cancer Survivors Day by hosting celebrations of life. NCSD events are filled with joy, camaraderie, hope, compassion, faith, and love. Cancer survivors are honored for their strength and courage, and the contributions of their families, friends, and healthcare providers are recognized.
The activities are as diversified as the towns and cities where the events are held and include parades, carnivals, races, art exhibits, ball games, contests, dances, inspirational programs, and more. Surviving cancer is an attitude about life and living each day to the fullest. NCSD helps call attention to the issues of cancer survivorship and will be commenced with greetings from President George W. Bush and the director of the National Cancer Institute.
A “survivor” is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life, according to the National Cancer Survivors Day Foundation, which reports that an estimated 12 million Americans are cancer survivors.
National Cancer Survivors Day 2008 marks the 21st anniversary of this celebration of life, and the Foundation is encouraging everyone to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center, American Cancer Society office, or contact the Foundation at (615) 794-3006 or info@ncsdf.org. National Cancer Survivors Day 2008 is being sponsored nationally by AstraZeneca, Coping magazine, Lilly Oncology, and R. A. Bloch Cancer Foundation.
About the National Cancer Survivors Day Foundation
The non-profit National Cancer Survivors Day Foundation supports hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day events in their communities, by providing free guidance, education, and networking. Its primary mission is to educate the public on the issues of cancer survivorship in order to better the quality of life for cancer survivors.
About Cancer Survivorship
As the world celebrates life on National Cancer Survivors Day, the accomplishments of modern science are evident in the ever-growing cancer survivor population. Addressing the poorly understood needs of these survivors is becoming a formidable challenge.
A cancer diagnosis can leave a host of problems in its wake. Physical, financial, and emotional hardships often persist after diagnosis and treatment. Survivors may face many challenges such as hindered access to cancer specialists and promising new treatments, inadequate insurance, financial hardships, employment problems, and psychological struggles. To improve the quality of life of cancer survivors, more resources, research, and survivor-friendly legislation is needed.
CONTACT: PAULA CHADWELL
PHONE: 615-791-3834
E-MAIL: PCHADWELL@NCSDF.ORG
Friday, May 23, 2008
Freedom to work????
NOTE: I wrote this before my trip but forgot to post it here. Will update this weekend.
Things have progressed since my last post. I found a funding source to get back on Medicaid (yea!) and am continuing the Xeloda chemo pills. My last CT scan showed no growth, so they decided this time to continue rather than stop the treatment. All the other times my CT scans came back negative, they'd stop that chemo and start something else, or stop everything. Not sure WHAT that is all about.
I have an appointment with Dr. Dragovich at the center. He's the GI specialist Oncologist I mentioned before - that I didn't know he existed, let alone at my own clinic. That won't be until June, but I'm very excited about it. My Oncologist and I seem to have come to an impasse.
I wrote up a bunch of questions for her my last appt. One of them being the triphasic CT scan that the surgeon in CA said he'd need to see to give me an opinion. Her response (through the nurse) was "if she wants a triphasic CT scan, have that Dr in California order it". Wow. The nurse DID tell me that my doc in fact did consult Dr. Dragovich when my CT scan showed growth (in FEB) evidently it was HIS suggestion to try Xeloda. Nice to know. sheesh!
The bad news is that my sister, who's been my main support, is having surgery today for Breast Cancer! She had had several biopsies over the years, always negative, but this time they found a lump. Very small, but aggressive, since it's showed up so fast, but then they are catching it early. Such twists! We're hoping for a clean lumectomy (sp?) and they plan on some radiation. The whole family is reeling from both of us getting cancer at practically the same time.
I'm going back to the Midwest next week. I extended my trip to visit my daughter in Chicago to also go to Minneapolis to visit my sister. I'm so looking forward to that! It's strange all of a sudden being a "caretaker" (as much as I can from 2000 miles) as well as trying to deal with my own issues by myself here in AZ.
I'm feeling ok. Some transitory pain in my middle, diharrea from the Xeloda, and it seems I'm getting fluid around my liver. It doesn't show up on the scan, I guess, but I've gained 15 pounds for some reason (besides eating a lot!) and I can FEEL my middle expanding! The nurse said I have a "little" fluid at my last check up last week, but let it go at that. I just had to buy new pants however!
Anyone know much about this? She just said to watch my salt intake.
All in all I can't complain. They said my prognosis last August was 6-11 months, and we're at 9 months and I'm in good shape!
Things have progressed since my last post. I found a funding source to get back on Medicaid (yea!) and am continuing the Xeloda chemo pills. My last CT scan showed no growth, so they decided this time to continue rather than stop the treatment. All the other times my CT scans came back negative, they'd stop that chemo and start something else, or stop everything. Not sure WHAT that is all about.
I have an appointment with Dr. Dragovich at the center. He's the GI specialist Oncologist I mentioned before - that I didn't know he existed, let alone at my own clinic. That won't be until June, but I'm very excited about it. My Oncologist and I seem to have come to an impasse.
I wrote up a bunch of questions for her my last appt. One of them being the triphasic CT scan that the surgeon in CA said he'd need to see to give me an opinion. Her response (through the nurse) was "if she wants a triphasic CT scan, have that Dr in California order it". Wow. The nurse DID tell me that my doc in fact did consult Dr. Dragovich when my CT scan showed growth (in FEB) evidently it was HIS suggestion to try Xeloda. Nice to know. sheesh!
The bad news is that my sister, who's been my main support, is having surgery today for Breast Cancer! She had had several biopsies over the years, always negative, but this time they found a lump. Very small, but aggressive, since it's showed up so fast, but then they are catching it early. Such twists! We're hoping for a clean lumectomy (sp?) and they plan on some radiation. The whole family is reeling from both of us getting cancer at practically the same time.
I'm going back to the Midwest next week. I extended my trip to visit my daughter in Chicago to also go to Minneapolis to visit my sister. I'm so looking forward to that! It's strange all of a sudden being a "caretaker" (as much as I can from 2000 miles) as well as trying to deal with my own issues by myself here in AZ.
I'm feeling ok. Some transitory pain in my middle, diharrea from the Xeloda, and it seems I'm getting fluid around my liver. It doesn't show up on the scan, I guess, but I've gained 15 pounds for some reason (besides eating a lot!) and I can FEEL my middle expanding! The nurse said I have a "little" fluid at my last check up last week, but let it go at that. I just had to buy new pants however!
Anyone know much about this? She just said to watch my salt intake.All in all I can't complain. They said my prognosis last August was 6-11 months, and we're at 9 months and I'm in good shape!
Wednesday, April 23, 2008
Possibility of Surgery for Bile Duct Cancer?
Ok, the letters got some reaction. My state senator actually emailed me back, several times!! Gotta love that, and besides the response, she also sent my letter to AHCCCS (medicaid) who called ME up! Her name is Paula Aboud, State Senator District 28, Tucson . NICE LADY!
When AHCCCS called, the woman explained some "in's and out's" of the spend down program and gave me some hope that this all might work out somehow and my medical expenses may get at least partially covered. We'll see! My advocate at the cancer center is in the process of getting appointments and billing timed as best as possible to cover as much as possible.
Last night I got ANOTHER call from someone from DES! I'm to call him back this morning, which I will as soon as it's office hours. (I'm still not sleeping much, so I've been up since 5am!) Didn't have a good night last night actually. This guy said that I should qualify for the "Freedom to Work" program of SS/DES. I've read up on it and am not sure. This whole thing about working and SSDI seems a slippery slope. I'll post more as soon as I hear what he has to say. In any case THEY ARE CALLING ME! That is the most shocking thing! When does a government service actually do that?
I also heard back last night from the Pittsburgh the UPMC Liver Cancer Center where I sent my CT scans and records. I called her back this morning. Dr Gamblin looked at my stuff and said it looked stable to him and as long as the systemic chemo was doing the job (keeping things from growing) he wouldn't change anything. I don't think he caught that the last scan showed some growth (to the doc's here anyway) and that they put me on Xeloda, but in any case it was a small amt of growth. He said though that I am NOT resectable. That's a major bit of news.
He said that if my tumors begin to grow again however, he'd recommend chemo embolization. That's where they temporarily block the blood flow to your liver and pump chemo stuff directly there, rather than throughout your entire body. I'll have to look this up again, but it's another procedure and often recommended for liver cancer. You can click on this Blog's title (Possibility of Surgery...) and it will take you to a link that has info on chemo embolization. It is at: http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1 He also said my bilirubin count has to be less than 3. So far that's the case for me. Bilirubin is measured by a blood test, and mine is around 1. People who have bile duct blockage (which I don't, thank god!) tend to have jaundice and high bilirubin counts because the bile is not getting out of the liver. It's these two things that usually indicate bile duct cancer, but mine's "intrahepatic" meaning it's all inside my liver and there is no blockage.
So that was the good news-bad news for this morning so far - and it's only 8am!
When AHCCCS called, the woman explained some "in's and out's" of the spend down program and gave me some hope that this all might work out somehow and my medical expenses may get at least partially covered. We'll see! My advocate at the cancer center is in the process of getting appointments and billing timed as best as possible to cover as much as possible.
Last night I got ANOTHER call from someone from DES! I'm to call him back this morning, which I will as soon as it's office hours. (I'm still not sleeping much, so I've been up since 5am!) Didn't have a good night last night actually. This guy said that I should qualify for the "Freedom to Work" program of SS/DES. I've read up on it and am not sure. This whole thing about working and SSDI seems a slippery slope. I'll post more as soon as I hear what he has to say. In any case THEY ARE CALLING ME! That is the most shocking thing! When does a government service actually do that?
I also heard back last night from the Pittsburgh the UPMC Liver Cancer Center where I sent my CT scans and records. I called her back this morning. Dr Gamblin looked at my stuff and said it looked stable to him and as long as the systemic chemo was doing the job (keeping things from growing) he wouldn't change anything. I don't think he caught that the last scan showed some growth (to the doc's here anyway) and that they put me on Xeloda, but in any case it was a small amt of growth. He said though that I am NOT resectable. That's a major bit of news.
He said that if my tumors begin to grow again however, he'd recommend chemo embolization. That's where they temporarily block the blood flow to your liver and pump chemo stuff directly there, rather than throughout your entire body. I'll have to look this up again, but it's another procedure and often recommended for liver cancer. You can click on this Blog's title (Possibility of Surgery...) and it will take you to a link that has info on chemo embolization. It is at: http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1 He also said my bilirubin count has to be less than 3. So far that's the case for me. Bilirubin is measured by a blood test, and mine is around 1. People who have bile duct blockage (which I don't, thank god!) tend to have jaundice and high bilirubin counts because the bile is not getting out of the liver. It's these two things that usually indicate bile duct cancer, but mine's "intrahepatic" meaning it's all inside my liver and there is no blockage.
So that was the good news-bad news for this morning so far - and it's only 8am!
Write a Letter!
I've been very busy lately writing letters - to the newspaper, to my congresspeople in the state, all sorts!
Here's the latest version of the letter I'd been sending. Next post I'll tell you what happened!
LETTER
In August I was diagnosed with an incurable cancer. At the time it was CUP - cancer of unknown primary, now it’s emerged as bile-duct cancer. This is a rare and usually fatal disease. It is similar to Patrick Swayze's Pancreatic Cancer.
I'm 57 years old and otherwise in good health. I've now been through three different chemotherapies with no good effect so far.
My personal insurance was UPH, a program supported by the State to help small businesses insure their employees. Unfortunately the program overspent their "expectations" and beginning last year they started raising rates and cutting services to such an extent that when they changed again 9/1/07 I found that the insurance was no longer affordable for me. Instead of the zero co-pay the policy I bought had for diagnostic tests in September it was going to 20% co-pay. Just an FYI. The CT scans necessary to monitor the effect of chemo cost in the neighborhood of $4000 each and you need them frequently if your treatments don't go as hoped and they often don't with many cancers especially rare ones where there is not as much research being done.
I was told to apply for SSDI (Social Security Disability) and Medicaid. I easily qualified and so the first 6 months of my care were covered. However in February I began to receive disability - terrific as I was 3 months behind on rent working very few hours due to chemo side effects and was in a world of hurt. BUT then I found out that I no longer qualified for Medicaid (run by the states each with their own rules although it is basically a federal program). So as of April 1st I no longer have ANY medical coverage and no way to pay for the very expensive chemotherapy I am on.
Now the state HAD forseen this sort of problem. Even when you qualify for SSDI you have to wait an additional 2 years before you can receive MediCARE. So for two years you are on your own. Why. I don't know, but I was told it was one way that services were cut during a previous "crunch".
Arizona created a program for people like me who once they get disability make slightly too much to qualify for Medicaid. (To qualify as a single person for Medicaid you have to earn $867/month or less, for example) Not a lot.
Section 4733 of the Balanced Budget Act of 1997 (BBA) allows States to provide Medicaid coverage to working individuals with disabilities who because of their earnings cannot qualify for Medicaid under other Statutory provisions. (They can't have much in the way of assets left either.)
Section 4733 allows States to provide Medicaid coverage to these individuals by creating a new optional "categorically needy" eligibility group.
Arizona had this program and funded it in 2007 but quickly it outspent their (optimistic?) projections. Now there is a "waiting list" that is HUGE of people waiting for it to get re-funded. As am I.
The program is only designed to temporarily help people like me who have catastrophic problems are on disability but have to wait for Medicare. They pay a premium on a sliding scale based on income. I'd be HAPPY to do that!
Instead it's not being funded and I am in the devastating position of not being able to do anything about my rare cancer. I can't even get a second opinion! (AHCCCS turned me down on March 31st even though any and every resource (including ACS) tells you that if you have an unusual cancer if you have no cure offered or several other criteria that I meet you SHOULD get a second opinion!) It's probably another cost-saving measure. In my case, since there are possible surgical solutions only done at Mayo Clinic, (the 2nd opinion I was trying to get). I am facing the "incurable" part pretty dramatically right now. Surgery, if possible, is the only real cure.
There IS a "spend down" option left which in my case means that if I spend all but a few dollars ($347) of my disability payments for three months completely on medical bills Medicaid will pay any remaining bills for 3 months. My question is how do I live on the $347? I'm still able to earn working very part time despite the disabling effects of cancer treatment, at the moment. But that $480/month only adds $480/month to my spend-down. I'm working because otherwise I'd starve and/or be homeless. Is this how we want to treat cancer victims?
What do I do?
Here's the latest version of the letter I'd been sending. Next post I'll tell you what happened!
LETTER
In August I was diagnosed with an incurable cancer. At the time it was CUP - cancer of unknown primary, now it’s emerged as bile-duct cancer. This is a rare and usually fatal disease. It is similar to Patrick Swayze's Pancreatic Cancer.
I'm 57 years old and otherwise in good health. I've now been through three different chemotherapies with no good effect so far.
My personal insurance was UPH, a program supported by the State to help small businesses insure their employees. Unfortunately the program overspent their "expectations" and beginning last year they started raising rates and cutting services to such an extent that when they changed again 9/1/07 I found that the insurance was no longer affordable for me. Instead of the zero co-pay the policy I bought had for diagnostic tests in September it was going to 20% co-pay. Just an FYI. The CT scans necessary to monitor the effect of chemo cost in the neighborhood of $4000 each and you need them frequently if your treatments don't go as hoped and they often don't with many cancers especially rare ones where there is not as much research being done.
I was told to apply for SSDI (Social Security Disability) and Medicaid. I easily qualified and so the first 6 months of my care were covered. However in February I began to receive disability - terrific as I was 3 months behind on rent working very few hours due to chemo side effects and was in a world of hurt. BUT then I found out that I no longer qualified for Medicaid (run by the states each with their own rules although it is basically a federal program). So as of April 1st I no longer have ANY medical coverage and no way to pay for the very expensive chemotherapy I am on.
Now the state HAD forseen this sort of problem. Even when you qualify for SSDI you have to wait an additional 2 years before you can receive MediCARE. So for two years you are on your own. Why. I don't know, but I was told it was one way that services were cut during a previous "crunch".
Arizona created a program for people like me who once they get disability make slightly too much to qualify for Medicaid. (To qualify as a single person for Medicaid you have to earn $867/month or less, for example) Not a lot.
Section 4733 of the Balanced Budget Act of 1997 (BBA) allows States to provide Medicaid coverage to working individuals with disabilities who because of their earnings cannot qualify for Medicaid under other Statutory provisions. (They can't have much in the way of assets left either.)
Section 4733 allows States to provide Medicaid coverage to these individuals by creating a new optional "categorically needy" eligibility group.
Arizona had this program and funded it in 2007 but quickly it outspent their (optimistic?) projections. Now there is a "waiting list" that is HUGE of people waiting for it to get re-funded. As am I.
The program is only designed to temporarily help people like me who have catastrophic problems are on disability but have to wait for Medicare. They pay a premium on a sliding scale based on income. I'd be HAPPY to do that!
Instead it's not being funded and I am in the devastating position of not being able to do anything about my rare cancer. I can't even get a second opinion! (AHCCCS turned me down on March 31st even though any and every resource (including ACS) tells you that if you have an unusual cancer if you have no cure offered or several other criteria that I meet you SHOULD get a second opinion!) It's probably another cost-saving measure. In my case, since there are possible surgical solutions only done at Mayo Clinic, (the 2nd opinion I was trying to get). I am facing the "incurable" part pretty dramatically right now. Surgery, if possible, is the only real cure.
There IS a "spend down" option left which in my case means that if I spend all but a few dollars ($347) of my disability payments for three months completely on medical bills Medicaid will pay any remaining bills for 3 months. My question is how do I live on the $347? I'm still able to earn working very part time despite the disabling effects of cancer treatment, at the moment. But that $480/month only adds $480/month to my spend-down. I'm working because otherwise I'd starve and/or be homeless. Is this how we want to treat cancer victims?
What do I do?
Tuesday, April 8, 2008
Monday, April 7, 2008
Oh I forgot to mention, one of the tumors DID grow!
I just reviewed my later posts and realized that I did not explain why I am now taking the oral chemo. Xeloda. The last CT scan showed that one of the tumors in my liver grew a bit, so now, after waiting with baited breath for 14 weeks, I can exhale and start to deal with the denial I'd been nurturing.
Looks like it IS going to grow. Hopefully it will continue to amaze the medical profession with how SLOWLY it grows, but I am going to have to face this reality and somehow, some way come to terms with a short future. I cannot begin to explain what that is like. It's beyond my ability to write. While it may be a "lesson" in living in the NOW, it's like the phantom limb experience I think. Oops, I was just thinking about how I'd still like to learn Spanish. WHY BOTHER? Quick splash of cold water! What should I do this weekend? Next month? This summer... Should I move? It's weird. Trust me, you do NOT want to know. :)
Looks like it IS going to grow. Hopefully it will continue to amaze the medical profession with how SLOWLY it grows, but I am going to have to face this reality and somehow, some way come to terms with a short future. I cannot begin to explain what that is like. It's beyond my ability to write. While it may be a "lesson" in living in the NOW, it's like the phantom limb experience I think. Oops, I was just thinking about how I'd still like to learn Spanish. WHY BOTHER? Quick splash of cold water! What should I do this weekend? Next month? This summer... Should I move? It's weird. Trust me, you do NOT want to know. :)
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