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!

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?

Remembering Matters: "Snow, Aldo" and Sparrow for President

Remembering Matters: "Snow, Aldo" and Sparrow for President

I love this poem! And this post!

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. :)

Epiphytic Notions: A Miracle Enveloped in a Tragedy

Epiphytic Notions: A Miracle Enveloped in a Tragedy

second Opinion Not necessary

Got a letter today from my "insurance" company. In their infinite wisdom they have determined that even though I have a rare cancer diagnosis of "unknown primary" and recently an even rare-er diagnosis of bile duct cancer, that it really is not of any use to have me go see someplace that specializes in these rare sorts of cancers.

All you have to do is look up second opinions on the web and you will find that EVERY reliable cancer source tells you that a second opinion is not only your right, but a very necessary thing in many circumstances. The biggest circumstances are when you have a terminal cancer that doesn't have a cure recommendation and even more so if you have a rare cancer that not every place is expert in dealing with.

What's not rare about bile duct cancer? on top of Unknown primary? Both are considered rare, both are automatic disability qualifications, both are quickly fatal without treatment and both have many questionable therapies.

But, Pima Health Systems decided to refuse me a second opinion. Their reason:
"AHCCCS does not pay for second opinions unless you have a medical need for it. The notes we have from your doctor do not show that you have a medical need for this second opinion. Please talk to your doctor for help with this."

I'd been in almost daily contact with these folks, trying to get them all of the information they would only parcel out bit by bit. I was working so hard to get it approved before they cut off my insurance completely on April 1st. The letter, dated April 1st. denied any need. I guess even if they didn't pay for it, they believe that there is no use in getting a second opinion on a fatal short prognosis cancer. Heck, I'll be dead before I can effectively protest!