But Wait, There's More

I just talked to MinnesotaCare. I was calling to see if they mailed the Term letter, and to which address.

Apparently the guy I talked with the other day (Sayid) did not actually update my address.

The very cranky woman that I just spoke with today (after I waited on hold for 20 minutes to talk to them) put me on hold for another 30 minutes trying to get ahold of the Department of Human Services (DHS), trying to request the termination letter. Apparently it's not as easy to change the address as Sayid had thought, as there were many things he did not do.

I couldn't actually get a word in edgewise and I had to say perhaps 10 times, "okay, hold on, I just want to make sure you're understanding what I'm asking," and she continued on explaining things that I already knew, off-topic from what I was asking.

After having me on hold with DHS (unsuccesfully) she mentioned that she wasn't allowed to be on a call that long. I said "...but I still have questions..." and she terminated the call.

She volunteered to send me a printout of her screen showing 0 balance and no coverage as of 9/30, which is not an official Term letter but may suffice. THe best she can do is send that through the postal system. SHe has no idea how long it will take to get the Term letter from DHS at the new address. Hopefully just a few days, but then it will be too late.

I'm rescheduling the surgery.

Good News

Just got a very helpful and positive voicemail from Karen at Gallagher, saying that she heard from her contact at MCHA and he talked with Compliance and they confirmed that I *will* be covered, no matter who termed who. Since it was a voicemail he left her, and a voicemail she left me, I didn't have a chance to ask why all the conflicting information, but it seems that there are situations that they make exceptions from the norm, and extenuating circumstances (such as a terminal condition if untreated) counts as a worthy exception. As it should.Since both messages (the one to her from MCHA, and the one from her to me) are now recorded and saved voicemails, we have a good evidence trail.

FYI, apparently the MCHA contact did mention that if someone was Termed for non-payment, that would be a reason to deny coverage for 6 months (though it seems like if you're the fallback insurance company that is designed to cover people who can't get coverage anywhere else for whatever reason, should that really matter? THe past is the past, and people who are willing to pay up front for coverage (which you have to do with MCHA or any insurance company) should be covered. Anyhow, it doesn't apply in my case, but good to know.

So, that all makes me breathe easier.

This was the first message from Karen that I felt she was starting to take this seriously, FYI. Before, its always sounded like she was doing me a favor by continuing to look into this for me.

Hopeful that I'll get the letter from MinnesotaCare today and maybe -- just maybe -- MCHA will approve this ASAP.

Insurance reform, anyone?

More Drama? Or just the Same Drama?

I talked to Mayo today and they mentioned that I might need pre-approval from MCHA before they'd cover me there. This was the first anyone had mentioned of this, so I called MCHA and found out that Mayo is in-network, meaning I don't need a referral. This was what I had thought originally, but it worried me that Mayo was unsure. But then again Mayo was still thinking I was on MinnesotaCare (which practically needs an act of congress to cover Mayo) so I can understand their concern. But still I got that settled once and for all.

While I was on the phone with the MCHA rep, I played dumb and asked a what-if scenario just to see what they'd say: if I Term my own insurance, rather than having it Termed on me, will I have the 6 Month PreEx clause? SHe put me on hold and did some checking. Yes, she said. You will not have coverage for 6 months, this is clearly stated in our rules, she said.

Back where we began, are we?

I took her name and called Karen back at Gallagher. I told her that I've talked to 3 different people there and they've all said the same thing. WTF. I asked her to get ahold of her contact at MCHA and find out why the story I'm hearing is different from what she's hearing. She called him and he said he'd check into the policy. It would take until tomorrow, Tuesday ( at the latest) for him to get back to her with the answer. Why he was able to give her and off-the-cuff answer originally, and now this one takes 24 hours, is a mystery to me.

So we're back in the undecided column. I may be covered. I may not. I have conflicting information, but so far more people have told me that I will *not* be covered than have told me I *will* be.

Oh and the billing office gave me the rundown on how much this entire Mayo thing (9 days of fun) will cost: roughly $110,000.00. So, yeah: I don't want to get that bill in the mail if I can avoid it.

It seems to me that for $110,000.00, one could rent a palatial estate for a month, complete with an army of servants, stock it with food, and have a surgeon and nurse on hand 24 hours a day and have some left over. But what do I know.

I should know more tomorrow about MCHA. It will still be a verbal assurance, but at least we should know why I'm getting conflicting information.

Oh, and today is a postal holiday, so no Term letter from MNcare. One more day of delay on that front.

What is more, Mayo definitely wants me to come down on Thursday for a fasting blood panel at 11 am and I will need to hand deliver the CT scans to them at this point. It will take 4 hours for the blood work to come back (hmmm: my Oncologist managed to do it in about 20 minutes...) and then I will meet with Dr. Hunter at 3pm. They require an in-person meeting the day before any surgery. At 8:15 that evening (and not before) I can call an automated line, enter my Mayo number, and find out what time of day the biopsy has been scheduled for the following day, Friday.

It is very likely that I will *not* have the insurance number in hand when I go down Thursday. Getting the MNCare notice one day later and having to be at Mayo one day earlier has squeezed this thing just a little too much at both ends. It is conceivable that I will try to push the surgery back, but I will wait until Friday to make that call.

On the plus side, I got together with Sean and managed to do some home-improvement planning/shopping (while simultaneously trading phone calls with Mayo, Gallagher and MCHA) and installed some space-organization things in my house. So all is not doom and gloom, of course.

The Story, T2N∅, ^&*%$ Minutes!

So, the whole MinnesotaCare/MCHA fiasco was a result of several things: 1) misinformation from the MCHA customer service people, 2) lack of knowledge about MinnesotaCare and MCHA on the part of the insurance broker, and outdated and inefficient practices on the part of MinnesotaCare.

This all started last week when I was wondering where the hell the Notice of Termination was from MinnesotaCare, and began to check into the status of this form.

To back up: when you're changing to a new insurance policy (as self-insured, not an employer plan) you'll need the Certification of Credible Coverage (showing no more than a 61 day gap in coverage in the last 2 years) and you'll need the notice of termination of your old policy. The normal process in this situation says that you first cancel the old policy, wait for he Notice of Termination to arrive in the mail, and then send the Term notice on to the new provider, who then *retroactively* covers you back to the day your old policy ended.

NOTE: if you have a 61 day (or more) gap in the last two years they can exclude any pre-existing conditions. I don't have a gap, so I'm good as far as that goes.

I knew that this is just how its always done with any insurance changeover, but I was still nervous about having no insurance card in hand that was any good for a week or two.

So, I sent in the request to terminate MinnesotaCare in september and they informed me that they only process these at the end of the month. I sent in my MCHA application -- minus the Term Notice -- knowing that they'd send me a letter saying that they needed this. THe theory here was that the application would get in the works, and when they had the Term notice it would be processed faster.

So we're checking the mail everyday after the first of October and every day the notice from MinnesotaCare is not there. It gets to be the 7th (it should have been mailed on the 1st) and no notice, so I call MCHA to see if maybe they just sent it directly to MCHA? No, they said. WHat's more, when I laid out the situation to the phone rep at MCHA, she told me that, since *I* had "termed" MNcare, I would be excluded for 6 months for any pre-existing conditions (though she called it a "PreEx". Since everyone who calls into customer service is an insurance industry expert, there's no need to actually spell things out and explain what that means.) SHe was quite clear and quite adamant that quitting your insurance to get on MCHA is not what its for an constitutes an abuse of the system that is designed to be fore people who can't get insurance elsewhere.

When I explained that I was leaving MinnesotaCare because I had exhausted my $10,000 annual inpatient (surgical) benefit, she was adamant that it didn't matter: you couldn't leave an existing insurance to get on MCHA, you could only get on MCAH if your insurance cancelled *you* or if you didn't already have it. Part of the confusion appears to have been that I hadn't exhausted *all of my benefits. My chemo, as an example, was done on an outpatient basis and MinnesotaCare picked up the roughly $40,000 cost for that. If I had exhausted *all*benefits, the phone support person said, it would be different. But since I had exhausted only *some* of my benefits, I was ineligible for for MCHA and would have the 6 months PreEx clause, with *all* claims during that time being returned unpaid.

So, I called my insurance broker, who claimed she hadn't realized that I'd only exhausted *some* of my benefits. Even though we talked specifically about this. SHe called MCHA and -- alarmingly, got someone on the phone that confirmed that what they were saying was true: I *would* have the 6 months PreEx clause because I left an insurance program and hadn't exhausted *all* benefits. She mentions at this point that I could have just stayed on MinnesotaCare and MCHA would have covered the inpatient benefit difference. This was something she hadn't known before.

I'd like to point out that I was actually on vacation at this point, staying at a lovely cabin in Wisconsin and trying to have some peace and quiet time before the surgery.

So at this point I'm being told that I have no insurance and that I won't have any coverage (for chemo, prescriptions, surgery, mental health, etc. for 6 months. Add to this the fact that I have been told that if I don't seek aggressive treatment I have about 2 years to live. I'm sitting here thinking: this lady just murdered me. No exaggeration or over dramatization: with 6 months to let this aggressive cancer run rampant and completely unchecked, she just literally *murdered* me.

FYI, Karen Wandmacher is her name, at Gallagher Benefit Services in Bloomington, MN. Feel free to send her a postcard.

Somewhere in the back of my brian I think I remember that if you cancel an insurance policy (at least in Minnesota) you have 10 days to change your mind. Its now getting close to the close of business on the 7th, and tomorrow, Friday, is the 8th. Sunday would be the 10th, so Monday would be too late. If I was going to try to get *back* on MinnesotaCare, I need to do it on what is left of Thursday, Friday, or never. And this is *if* I remembered correctly about the 10 day window. Its about 2:30 pm on Thursday and I start trying to get ahold of MinnesotaCare.

If you've never tried to contact MinnesotaCare, count yourself lucky. Sometimes you'll get a message that says that all lines are busy and try your call again later. No queue, just call back: there are too many people in queue already. Most of the time, you'll get through, listen to hold messages and music, and wait for 10-30 minutes before reaching a representative. But on this particular day I think that the people must have been having a birthday party or some such, since the call would wait in queue, ring perhaps 30 times, and then just end, as if someone had picked up the call and slammed down the phone again. This happened for 2 hours straight, perhaps 10-15 attempts to get through, until they stop taking calls at 4:30.

NOTE: For the record, I am 100% behind nationalized healthcare. But I fervently hope that when we *do* get it, it is better funded and run by people who care about what they do more than the people who run MinnesotaCare. MinnesotaCare provides an essential service and I'm sure on a shoestring budget. I'm sure they're overworked and underpaid. But at that point in the day and in my life I didn't care about anything other than getting health insurance. Anything that stands in my way pisses me off.

At this point there isn't anything else I can do. Its the close of business on Thursday. JL comes up to the cabin as planned, and then I have to ruin her evening as well. I put the best face on it, but she knows this is serious shit and is livid at this women as well.

We debate heading back into the cities (2.5 hours away) but reason theres no real advantage to this. Might as well get some sleep and enjoy what we can of the cabin.

I know that Minnesotacare starts taking phone calls at 9am.

Friday eventually arrives. At 8 am I am up and talking to another medical insurance industry specialist (I think she may be a lawyer, but honestly I didn't even have time to ask) that my mom and her longtime friend ML have recommended to me. This person is amazing, knowledgeable, and helpful. I should have talked to her her long before. Thank you both for the recommendation.

At 9:05 am I am talking to a MinnesotaCare phone rep who confirms that I *can* get back on MinnesotaCare since it is within 10 days, but I will have to provide updated bank statements, car titles, employment information, pay stubs, lease agreements, etc. How this is different from simply reapplying, I'm not sure. But I would need to drive back to Minneapolis and spend all day waiting with a number in hand in order to reapply. And when talking to the rep, with the questions he's asking, and essentially starting the process all over again, I think its just going to take too long to get a decision out of them and I'm not sure they'd take me anyhow.

I call MCHA again, talk to a different rep who essentially confirms what the person the day before had said -- except mentions that MCHA does sometimes make exceptions for some extenuating circumstances. She doesn't have the authority to approve my claim of course, but just that possibility gives me some hope. We fret and stew and realize that it might be best to head back into town. If I need to reapply or go to some government office to get some other form, or knock some heads at Gallagher, I need to be in town. So we pack up and leave 2 days early.

On the way back, JL recommends that I call Karen at Gallagher again, maintaining that its Karen's screw up and her mess to fix. JL is a businesswoman and a boss, and she has many good ideas, especially in situations like this. I agree and -- though I avoid confrontation -- give Karen a call again. Karen volunteers to all MCHA again and get the scoop. To my surprise she calls back a few minutes later and says that its good news: she talked to a supervisor there and got assurances that -- no matter who terminated who or the reason for termination -- MCHA just needs the termination letter and then they'll process my application. Karen has the person's name, assurances, and has documented the call so we'll have a case if they deny my claim or do the PreEx. Why this would be different from what they told her the day before worries me, FYI.

Great news. Definitely. Still, it depends on verbal assurances and say-so, and nothing is in writing, so that makes me nervous. All they need is the Term Letter. And where *is* that term letter, anyhow?

I call MinnesotaCare again, asking them that same question. When was it mailed? And *where* was it mailed? The reason for the delay becomes clear. They sent it to my *old* address. Even though the request for cancellation that I faxed to them *also* had a request to change my address to the new one as well. That's okay, I say, I'm having my mail forwarded. It wont work that way, the guy says: there is a Do Not Forward notice written on the letters from them.

Can they fax it? No. Can they print it out and can I just pick it up? No. Can they email it? No. Printing is done somewhere else by magical elves, apparently, in a secure undisclosed location. They submit a request to print something and it prints the next day -- somewhere -- and is then mailed from there. I update my address and request a new one. It will print on Saturday and hopefully mail out on Monday, hopefully getting to me by Tuesday.

At this point I will need to rush this form to my nearest fax location and send to MCHA. Then I'll need Karen to call MCHA and light a fire under them, asking them to Expedite the process.

The scary thing is that I Mayo actually wants me to come in a day early now, on Thursday, for bloodwork and another CT scan. This means there is about a 20 work-hour window in between me faxing out the Term Notice until I ned to give my insurance number to Mayo. Eek.

If it were a simple process I would move the entire thing back a week. But Dr. Hunter schedules 6 weeks out at a minimum, and I don't think its a good idea to wait that long.

So there isn't much else I can do but have faith and hope that it will all go as they assure me it will, and that I'll have the insurance number before heading into Mayo.

So that's what my life is like, honestly. Its been like this off and on for the past 3 months since I got the diagnosis. Sleepless night dues to worry, hours spent on the phone, letters, forms, faxes, visits, tests. And, I should mentioned, the amazing support I have gotten and continue to get.

Oh and I did get a piece of good news, unconnected to the insurance drama: Dr. Grampa (my Oncologist) and Dr. Hunter (the Mayo Urological Surgeon) conferred an agreed that my tumor is now at T2n0 -- stage 2 tumor, no lymph node involvement, whereas it *had* been T2N1, stage 2, with one lymph node affected. So the chemo and everything else has had a positive effect and it is shrinking.

P.S. I have used about 430 minutes on my celphone in the past two days, eating up the remainder of my monthly minutes and all of my rollover minutes I had banked. This leaves me with just over 100 minutes to get me through until my minutes renew on October 24th. What this means is that I will no longer be accepting or making calls for anything other than business purposes during the week. Calls after 9pm are free for me as are weekends, so I'll talk to people then. I get virtually unlimited text messages, so those are preferable. Email is great, also. If you have AT&T, let me know, since I'll get free calls to you that don't count towards my minutes.

One advantage of the iPhone though: it doesn't cost me minutes to *listen* to your messages, since it actually downloads them to my phone. So I'll get your messages (and feel free to leave them, please) but I will respond via either email, text, or after 9pm or on the weekend.

Thanks so much to everyone, for everything!

Emergency Averted (hopefully)

More info to come, but after hours (and hours) spent on the phone both yesterday and today I have gotten confirmation that everything *should* be back on track with MCHA. If all goes as promised right now, I *will* have coverage for my surgery which is scheduled to begin this Friday. It was a rough 24 hours, but I think everything will be OK now.

Livid

There is an enormous wrinkle in the plan that may mean that I cannot get surgery for 6 months.
At the advice of a benefit specialist who helped me to find out about MCHA and was coordinating my application, I cancelled MinnesotaCare, intending to get on MCHA. I was told by her that you can't get MCHA if you have another insurance, and I needed the certificate of termination in hand before applying.
BUT, it turns out that you can't get on MCHA If you voluntarily leave your existing plan, even if it doesn't meet your needs. MCHA is allowed to exclude me for 6 months based on pre-existing conditions.

The benefit specialist that I worked with now says she didn't realize that I'd only exhausted my *inpatient* benefits, not all of my benefits, though we *specifically* talked about this ad nauseum on the phone. She also specifically told me that I needed to cancel MinnesotaCare *before* applying to MCHA. She knew that I was covered and that I was leaving voluntarily.

It turns out she was dead wrong about having to cancel MinnesotaCare. A person *can* have both Minnesotacare and MCHA at the same time, and MCHA will make up the difference. This is according to MCHA. She admitted that she hadn't known this until today. A major ***ing oops.

Now I have but one hope of having this surgery done in the next 6 months: go crawling back to MinnesotaCare and hope that they'll take me. Of course, I have Cancer, so it wouldn't be in their best interest to do this, financially.

If MinnesotaCare takes me back (and I may need to reapply fresh all over again and wait a month or so to hear the decision) then I still need to get out of them something that I have been unable to get, since no one person feels authorized to give it: a letter stating that I have reached my $10,000 inpatient benefit. MnCare thinks it's HealthPartners (who administers MinnesotaCare for me) department.... and HealthPartners thinks it's MnCare's department.

Before hanging up on my insurance "advocate" at Gallagher benefit Services, I informed her that her oversight and misinformation, leading to a drastic delay in surgery, has almost certainly shortened my lifespan.

At my own hand, acting on misinformation, I currently do not have any health insurance whatsoever. I voluntarily cancelled the only plan I had.

Request, Good Thoughts

Whether you're a person that believes in prayer, good vibes or just plain positive thinking, I could really use any spare prayer/good thoughts energy to be focused on one specific thing: I really need my biopsies on October 15th to come back clean and cancer free.

The results of the 10/15 biopsies will greatly determine the scope and invasiveness of the surgery that I have the following week.

Still hanging in there, though worrying about the surgery of course.

Thank you, to everyone, for your amazing notes of encouragement and cheerleading, I feel very loved.

- M

On the Rise

I'm feeling better by degrees and gradually feeling more like myself. I've had the energy to go on longer walks and even went to the gym yesterday. I still worry about the surgery, etc., but in general I'm doing better.

I've been back at work (part-time, which is as often as I ever have worked during school) and its going well.

My next real steps are:

1) making sure the insurance transfer from MNCare to MCHA goes off as planned at the end on September. I have no reason to suspect that it wouldn't, but I'll rest easier knowing its done with.

2) figuring out the logistics for the Mayo trip. I now have dates in hand:I'll be at Mayo on the 15th for another biopsy, though this will be outpatient, day-surgery. I'll be back in Rochester again on Monday the 18th to get the results from Dr. Hunter I'll plan to check into a hotel that night and stay in Rochester. The next morning, the 19th, I'll check in and have the surgery that day. I'll be at mayo for about a week. The surgery will suck, and the recovery will be annoying. But hopefully I can start getting back into some sort of normal routine by early November.

Good news, bad news.

I am back from the Oncologist's office. The scan was good news: the tumor has still not spread anywhere else, but they couldn't image it clearly on the CT scan. This either means that it has has broken up (this does not mean that I'm cancer free) or just that they couldn't get a good picture.

The good news is that I'm done with chemo, at least for the forseeable future. Though on the chemo subject I am already starting to get a little testy when people tell me that I look good. I think what they really mean is that I don't look anywhere near as bad as they thought I would. Some people even tell me that the chemo was easy (this seems strange to me, since it was me going through it and not them, and there were times when I thought I was going to die I was in so much discomfort). But I am not the kind of person to contradict if I can avoid it. And I am enough of a Minnesotan that when people ask me how I'm doing I take it as a greeting and not as a question of health concern. I respond in the standard Minnesotan way: "pretty good". Even if I feel like my joints are going to explode and I feel like I'm going to black out when I sit up suddenly.

Dr. Grampa reminded me that Chemo here is really just used to keep the cancer at bay. It puts it on pause, so to speak, but isn't able to kill it. They still can't cure cancer. This is why some of the more popular cancers have walks, ribbons, races, etc. Though I sometimes think that these events are more about cameraderie than about fundraising. And cameraderie is great. If you have a popular cancer. Bladder cancer is apparently obscure, so I have yet to meet anyone that has had it. Yet again, I am a rebel: flying in the face of the norm.

My cancer is highly aggressive, so Chemo (and even radiation) would not solve the problem. The only solution is to cut out the affected area of the bladder, anbd take a few lymph nodes in the area to biopsy, and hope that this gets it all. But there is a chance, a very real chance, that this will *not* cure it, and this is what both my oncologist and the bladder cancer doc at Mayo (one of the very best surgeons in the entire world for my exact type of urothelial carcinoma) are telling me.

There is a very real chance that I may be chasing this cancer down for the rest of my life and that it will affect my longevity. We talk about cancer in terms of 5-year survivability. Mine -- with my unusually young onset and freakishly aggressive composition -- is at a 60% chance of survival, according to Dr. Hunter at Mayo. FYI, If I had not done anything at all, I'd have been dead within 2 years, the cancer having by this time spread to bones and other organs. Dr. Hunter mentioned in my initial meeting with him that in his (extensive) experience with this type of cancer it most likely *will* come back within 4 or 5 years, mostly likely in another location. Even if I cut out the affected area of the bladder.

My 5 year survival drops to 20% if the biopsies that Dr. Hunter plans to do before surgery don't come back clean.

I have known about some of the scariest statistics for months but just haven't been sharing them here. I think I was trying to shield people or something. It was a misguided attempt to put on a happy face all the time and not worry anyone when some people are very worried. But I realized that I haven't been blogging much recently because all I have been thinking are these worst case scenarios. And I didn't want to worry anyone. I really don't want to be the guy that you don't call or see because I depress you or remind you of mortality or something. It made sense to me at the time, but I'm starting to get to the anger part of this 12-step grieving process of mine. I shall never be the same. And that part really pisses me off.

On the plus side, having some heads-up of one's possible mortality forces one to make better choices: keep the good, get rid of the bad, grab the wheel with both hands and take charge. None of us ever have any guarantee of being around tomorrow. But it sucks to think that there's only a 60% chance that I'll be around 5 years from now.

Rawhide

I have been progressively feeling better, though still very tired. I no longer feel like I have the bends, and am sleeping well.

Today I had the CT scan, which is a quick and painless scan. The entire thing took less than 5 minutes, and the worst part about it were the clock-watcher techs and nurses at Mother Theresa Institute, more interested in getting maximum patient throughput than anything else. Rawhide-style medicine, I thought at the time: "Keep movin', movin', movin' / Though they're disapprovin' / Keep them doggies movin' Rawhide! / Don't try to understand 'em / Just rope and throw and grab 'em..."

The results will have to wait until next Monday when I meet with my oncologist, Dr. Grampa. This is the scan that will determine whether I have to do more chemo, or Herbert the tumor has shrunk enough that we can do surgery.

Speaking of surgery, I am on Dr. Hunter's schedule at Mayo. If all goes as expected with the CT, I'll be down at Mayo in early October. It's a little scary to have a date set for the surgery. It has a seemed a little theoretical up until this point...