Return to near normalcy

Today was the big day: catheter out at Mayo. Everything went as planned and, without getting too much into the details of the procedure, I'm healing well and am on the road to being something like normal once again.

Today I'm mainly feeling frustration, though. I was very much at the end of my own patience with this thing on Saturday, and even though the pain had lessened to just a constant ache and burn (as opposed to a tearing sensation) I just could not stand to have this thing any more. Too many changes, modifications, things I can't do or have to do differently. Sleeping was difficult, napping was nearly impossible, walking was painful, etc. Etc. So it's gone, and I'm glad for that. The process was embarrassing and it still is. Early on I made a conscious effort to share the whole story, buy it takes a strong constitution that I do not always possess to talk frankly about socially embarrassing things like this. I end up resenting myself, the world, life. Really I want to turn it all off and return everyone to their regularly scheduled programming. But I'm not quite done dealing with the inconvenience of this, though I would like to be.

As the dust settles, for the most part now my job is to try to make up for 5 months of lost time with school and work, and to try to not worry too much about my 3 month followup at Mayo.

I am thankful for the support, feedback and encouragement that I have had throughout this process. I have learned a great deal about family and friendship. I have been surprised at the cornucopia of reactions to my situation, from panic to apathy. I have found that some of the people I thought I was close to before, I really wasn't... and vice versa. In all, I have learned and have grown.

It's always something

So I get an urgent call from my primary care doc at the end of the day. "Remember that Cipro prescription I gave you a few hours ago that you just started taking? The secondary tests came back and it turns out that your infection is resistant to Cipro." so another trip to the pharmacy and now I'm taking Cefuroxime. If it ain't one damn thing, it's another. Hopefully this will fix it...

Connecting the dots

I just now received my very own laminated member card from MCHA/Medica. Hooray! I immediately called Mayo and gave them the info. Mayo will bill Medica for the surgery. This is not a new revelation at this point, and it is what I was told would happen, but it feels good to actually have the card in hand and have given Mayo the number.

In other news: I have a UTI, which I have had since at least last Tuesday. The urine tests just came back from my primary care practitioner. It it a hollow victory to be proven right: there was indeed something wrong and it was hurting more than it should have. I'll start mega doses of Cipro today and am pounding the cranberry juice.

The road back

One thing that has worried me throughout these past 11 days or is the constant level of Codeine-family (opiate-based) painkillers I've had in my body to combat the pain. I've even been setting an alarm at 3 am to get up and take more on schedule, just to keep the level up and the pain at bay. I realize how addictive this stuff can be, and I have known opiate addicts in my life. I know that the effectiveness decreases over time, leading to more and more intake if a person is not careful. I don't believe anyone ever *intends* to get hooked on anything, but I have been taking the maximum recommended daily dose for a week straight and that hasn't been fully fighting the pain. I've resisted the strong urge to fake more than the recommended dose. The farther I get from the surgery and as the pain fades somewhat naturally, I have decided to start weaning myself off of them. Today I started halving my dose, taking 375mg of hydrocodone every 4 hours rather than the 750 I'd been taking. I figure I'll do that for 2 days and then halve it again: 375 every 8, etc. Hopefully it will be reasonably painless to get off this stuff.

Frustrating, but livable

It is annoying, to say the least, to spend 2 weeks with a tube coming out of you. There are things to worry about that are new. Making sure the line is clear and not kinked, as an example. But since we have nerve sensation in our entire bodies, we're used to physical sensations when we need to go to the bathroom, sit down, sleep, etc. THe line-and-bag has no nerves, of course. I need to constantly visually check it, making it feel like a numb appendage. A problem, by the time is causes me sensation, will be a very urgent problem. This was part of the problem with yesterday's visit to the Emergency room. the line had become plugged (yeah, its gross but sorry: this entire thing is gross) since its not just processing urine but draining through a wound site. Drinking mega-water is the solution. Apparently I'd slacked on my water just enough for a clot to form in the line, and then suddenly my poor bladder, so tortured last week during surgery, was getting a workout and having to work like a bladder again when its just not ready to. It was forced to stretch to hold the non-emptying liquid. The danger here was if it stretched too far it might burst some of the stitches in the bladder. If this had happened, and if urine had gotten into the abdominal cavity, I would have been susceptible to sepsis, and -- most importantly -- would have risked spreading urothelial cancer cells into my abdominal cavity, creating a cancer field-day in my abdomen. This all could have gotten 10x worse, giving me several new, different cancerous areas just yesterday if the catheter had remained blocked for just another hour or so.

So, its frustrating. But I am good at reminding myself that it is just two weeks. If this was a permanent lifestyle change, I'd probably need some therapy and there would be some major adjustment. I know people that live with this 24/7 and they adapt just fine. Most of the problem, I realize, is my own feeling of broken-ness. Its a constant reminder of the Cancer Thing in a way that the hidden, theoretical, internal cancer never was. It showed up on x rays and scans, but I basically felt fine. The chemo was different, and that was the moment when it started to seem like it was real, that it was really happening to me. But there were times during the chemo that I just felt tired, sick, etc.,etc: at least these were familiar feelings to a certain extent, even though the chemo is unlike anything else I've ever experienced. It still felt theoretical. like it could have just all been a mistake. I couldn't ever see the cancer. The catheter is a visual, physical reminder of where I'm at. I'm amazed that I can sleep at all with it in, but the human body is quite amazing at adapting. It still surprises me and shocks me a little to see it coming out of me. I'm partially plastic at the moment: this thing becoming an unfeeling appendage that I nevertheless take care of as I would any other vital body part. I'm not saying that I will miss it once its out -- quite the contrary --- but for a few days afterward I may still tend to look for a nearby place to hang the catheter bag whenever I stop moving. I haven't yet walked away from it leaving it hanging there, FYI: its amazing how quickly one gets used to the idea of this thing and understands how much that would hurt.

It is temporary, and it is survivable and it is tolerable. Episodes like yesterday's trip to the emergency room leave me frustrated and feeling that I'm really tired of taking up people's time (most notably mine) with this thing. But the surgery is done. The cancer is out. The bladder is healing. Just 3 more nights and then I'm back to normal (whatever that is).

Oops

I am reminded that catheters -- like parachutes -- function better when open. 1 quick trip to emergency room later, and everything should be fixed. Ow.

Much Better

Feeling much better today. Whatever was causing the discomfort appears to be fading . Not 100% gone, but worlds better than yesterday. Other than that not much to report other than I'm still looking forward to getting the cath out and being post-cancer, at least post immediate-obvious-cancer stuff. I can handle getting a CT every few months, even if I will have to drive down to Rochester to get it.

Reflections

I am developing the skill of sitting or laying in the same position for a very long time and being comfortable doing jt. I usually think of myself as a fairly fidgety person, but since finding a comfortable position with no catheter pain is rare these days, when I find one I can stay stay still for a very long time. The discomfort of cramping muscles is still less than the sharp catheter pain. I'll take the lesser of two evils, please.

7 days to go

I talked with Mayo today to schedule the catheter removal for Tuesday the 2nd, and the scheduler mentioned we'd have to do it a day earlier, on Monday the 1st, since Dr. Hunter will be in surgery on Tuesday. Totally fine with me. So 7 days to go on the catheter instead of 8. May the good news just keep pouring in.

An average-to-good pain day today. Still not able to go off the painkillers, but at least they're working well.

Fabulous news

I just talked to MCHA, calling to make sure they'd gotten the termination fax from Friday. "Yeah, that was approved," the dude said, after calling up my file. I was only expecting him to be confirming the receipt of fax. "... that was approved today, retroactive to 10/1." he says. He has no idea what a great piece of news this is for me: I will *not* have to personally be responsible for the $66,745 that the mayo surgery cost. He told me how to go online and print out the claim forms. I'll have an I.D. Number in a few days.

Huge sigh of relief.

Looking up?

While the pain has been nearly constant, it's subsided to a reasonable level, and I had a few blissful, pain-free moments last night that were amazing. When the pain starts to become normal, it's absence feels like nirvana. Unfortunately, since most of the pain is caused by moving, I move very little, planning my trips up from the couch or bed to economize: taking a small load everywhere I go, such as my empty water bottle, phone, breakfast plate, book etc, and setting the items down in a pile as I refill the water, pit the plate in the sink, then grabbing the book and phone and continuing my rounds, etc. I can lift more than 10 pounds for 6 weeks, so I'm careful also not to take too much.

My extremely painful incident on Saturday was a bladder spasm, caused by the aggravation of an overfull bladder, I believe. These bladder spasms (uncontrollable painful clenching of the bladder muscles) are common after urological surgery, and I have a prescription, Ditropan, that's I've been taking regularly. Side effects include dry mouth and nausea, but both are preferable to the deep, organ pain that I'm getting with the spasms. My dad commented on tooth pain, and I was actually thinking that organ pain is perhaps very like tooth pain, it feels like something that our animal nature tells us to run away from, illogical as that is. The flight reflex is very strong.

I'm feeling spacy and out of it, but I will trade that for the pain. My apologies in advance if I see you or talk to you on the phone and I am a little distracted: I'm pumped full of schedule II prescription narcotics. Only 8 more days until the catheter comes out. The 'scrips will run out before then, so I'm hoping I'll either e lain free or can get a refill.

I've been fortunate to have a stream of people keeping me company and either bringing for or just making stuff for me from my well stocked pantry. Jen, my mom, Ray, etc. Thank you all. And i have many other distractions: hooray for Netflix, Roku, and World of Warcraft. I have plenty of distractions and an doing fine mentally and emotionally. If feels like the pain peaked on Saturday and Sunday and is now in decline.

Grin and bear it

Still homebound and shuffling slowly about the house. I had an acute bout with pain yesterday from the catheter which is the sort of pain that could make a person insane if it went on long enough. A never-ending, searing, toe curling pain that literally drove me to to tears for 10 minutes or more. It took a herculean effort not to just forcibly yank it out, though that pain would likely have made me pass out. And I'd just have to go to the emergency room to have it put back in again. Jen was here and i was reflecting in which is worse: to have such pain with an audience, or to be alone. Just 9 more days. This is more constant and specific pain than I've had at any point in this process, including chemo. I'm taking the maximum daily amount of my opiate painkillers, Tylenol, etc. My preference was be off them but it's just not possible at this point. Oddly, I feel only muscle stiffness from the incision (about the size and location of a C section scar) and some pain when first standing up or sitting down.

Nothing makes the catheter pain go away, it's with me 24/7. Though hopefully not as bad ever again as it was yesterday.

Tomorrow, Monday, I will call MCHA and make sure they got the fax from Friday. Karen at Gallagher mentioned there's nothing she can do to move the application along faster at MCHA, and she took the first part of next week off, anyhow. So I'm on my own with MCHA.

I feel like boredom *may* set in once/if the pain goes away, but the two are fairly incompatible.

Well, Glory Be

A big undercurrent in the past couple of weeks has been the MCHA/MinnesotaCare insurance switch over. All I needed was a letter of termination from MInnesotaCare -- which actually comes from Hennepin County, who services my benefits. Seems simple enough, but not for the single-celled organisms at Team 261.

When you're having problems with a state agency, and kicking it upstairs just isn't helping, eventually you're going to reach an elected official. This was my brother Kevin's idea, and a good one it was. We talked to my district 4 commissioner, Peter McLaughlin, and his assistant Dorothy was a rabid attack dog on our behalf. "that's just not acceptable," she said when we laid out the Situation.

I'm not sure what she said to them, but all their stories to me of "it takes two weeks to send out a new form," and "no we can' fax, email and you can't pick it up," dissolved like so much dust. Within hours of Dorothy calling, someone there had hastily, fearfully whacked together a termination letter and sent it to Dorothy (at her request, so she could make sure they were doing what they said they were doing this time rather than just blowing smoke). Hours after out first call to her she had the hand-composed letter on her desk, faxed. Amazing.

Of course, Team 261 being the idiots that they are, it was full of typos and omissions and didn't meet our needs. We felt vindicated that Dorothy got to see firsthand what we'd been dealing with. Dorothy worked them again, and late Friday an accurate, useable letter was faxed to her. She faxed it to Jen at her work, who in turn faxed it on to MCHA. Hallelujah. It only took 23 days to get this letter in their hands.

Thanks also to my mom, who was working the phone with Dorothy even as I was in surgery, and Kevin for the great suggestion, Jen for the help as well. This entire process (the cancer, not just this letter) would have been insurmountable without all of the great help and support thy I have gotten and continue to get, and I appreciate it wholeheartedly: thank you.

From here, it's just up to MCHA to approve me and (hopefully) retroactively cover me for the Mayo surgery. When the catheter comes out in 10 days I'll have this entire thing behind me, other than lifetime regular check ups, which I can certainly live with.

Oh, and if you live in his district, Vote for Peter McLaughlin for Hennepin County Commissioner on November 2nd. I'll be getting a yard sign.

Home at last

They released me from Mayo yesterday, disconnecting me over the course of the day from the IVs and getting my discharge paperwork together. I've said it before, but the Mayo folks are top-notch, as you'd imagine. The nurses, docs, everyone was very kind and helpful.

We headed out at about 2:30, with Ray and Gabriel driving down from the city to get my Mom and myself. The world moves by dizzyingly fast after just a couple of days in a bed. The light was too bright and i found myself fascinated by everything, but also tired out by it as well. who would think that a 1.5 hour car ride would exhaust me so much? I crashed immediately when I got home.

It was nice stepping back into my own home, which I had (brilliantly, I think) cleaned up completely before I left, doing all of the laundry and dishes, etc. My dog is still with a friend, partially because I'm not totally ready to take care of her, and also because she scraped her leg when at her foster mom's house this past weekend and has bandages of her own :(. So we're both healing. It will be about a week before I get her back. I hope she's doing okay.

I am struggling with the opiates that they sent me home with. I don't like the idea of being on them for a week or two, and I don't like the side effects (dizziness, spaciness, dry mouth, etc.) but they are the only thing that really kills the pain. The catheter (i know: gross) is my main source of pain right now, more than the incision site which is surprisingly not very tender.

Catheter Fun

p.s. if you're squeamish or something, you might want to skip this. But since I have bladder cancer my life has been all about pee-related stuff for the last few months. I guess I'm used to it, and I figure that 10% of the people out there might want to know more about it, so here goes. And I hear that there are other people in the world that need to pee also, so maybe we should all just get over it. ;)

The catheter, or "foley" is a soft, flexible blue silicone tube that is inserted into the wee-wee and is held in place by a small silicone balloon inside the bladder that is filled with saline. Anyone ever see the movie Hot Tub Time Machine? Its forgettable, but there is one scene where one of the characters is in the hospital and is catheterized, and he yanks the catheter out of himself, breaking the balloon, and leaves the hospital. Having had a catheter in before (and having one in right now) I cannot imagine the pain that this would cause in real life. Mostly, its just an uncomfortable, sickening tugging feeling deep inside your body that is and area that we're not used to feeling anything. Bladder spasms are part of the post-bladder-surgical experience, and feel like you have to pee in the worst way imaginable, causing pain so intense that my normally stoic countenance is reduced to uncontrollable exclamations that the neighbors might be able to hear. The bladder spasm drug is an opiate-based drug that mostly controls these, so I'm taking it only when needed. I'd like to be taking nothing but Tylenol right now, but its just not practical.

In the hospital, the (female) nurses were mystified that my catheter was so sensitive to me. Every tiny tremor in the line felt like a rough piece of wood was being put in places that guys generally don't want rough pieces of wood. Or anything, for that matter. This pain was due to 2 reasons: I just had bladder biopsies last friday, so they had gone in through the urethra with tools of some sort (I don't think I actually want to know). The other reason is that I'm younger than most of the urological surgery patients by 30 years or so. Dr Hunter said that if I was 80 I wouldn't mind it so much, but the 43 year olds feel more and so complain more.

The (male) tech from urology training that was showing me how to take care of the catheter kept tapping the hose and I would wince and tell him it was really sensitive. "Well, it shouldn't be." he said, acting like I was being high-maintenence. If he had tapped it just one more time I would have made him explain the process from the far side of the room. I don't know if he's ever had a catheter in, but he was certainly at least 20 years older than me. I think it should be required in his line of work to walk around with one for a day.

So, I'm home-bound, shuffling from room to room, for most of two weeks. I can only hope that it gets better but I'm not able to sleep without painkillers yet.

I have many distractions, many offers of help. No dog, sadly. But this will all be getting much more normal in about 11 days, when I get the catheter out on election day.

Wednesdaze

Good news, indeed.

But first, my day.

I had a blurry, uncomfortable, dimly-remembered day and evening last night. The pain and nausea from the 7" long incision nearly got the better of me and I was hooked up to a morphine pain button all day and night. I kept requesting more antinausea meds but they would decline, telling me I'd had all I could have for one day. Morphine makes me groggy yet antsy, doesn't actually kill the pain, and makes me unable to sleep well. Sleep, when it does come, is brief and filled with vivid colors, sounds and creative horrors. Not what I'd recommend.

Fresh out of recovery, I had a hard time focusing my eyes on anything and visiting with the army of well-wishers waiting in my room was tiring and felt like a carnival ride. Faces kept sliding in and out of focus. I was pleased and surprised at the crowd, but also self conscious since I felt like crap and clearly looked it as well. The Ill fitting floral blue and white hospital Mumu doesn't help my self image.

That day and night I had 2 IV's, a nasal oxygen cannula, a catheter, a blood pressure cuff, a fingertip pulse oximeter, and two inflating cuffs attached to my calves to keep from developing a clot. Thus encumbered, moving was nearly impossible, and painful when I did manage it. This is the part if surgery that I hate most: the first night hooked into tubes and wires, beeping machinery glowing through the night, attentive nurses checking on me every 1/2 hour or so, their well intentioned visits interrupting my fitful sleep. The pain and meds fight each other until eventually they call a truce and sheer exhaustion leads to moments of black sleep.

Morning, blessed morning. Dr. Teenager and Dr Hunter give me the good news from the day before and see how I'm doing. They reiterate that I should be able to leave on Thursday, which is great news. They are clearly pleased with the result: the urothelial cell carcinoma is not normally a good candidate for the partial cystectomy due to it's aggressive nature and the way that it spreads. But they got it all, and I'm now classified as N.E.D.: No Evidence of Disease. Great news, and now it seems more and more that -- other than regular checkups for the rest of my life -- I will soon gave this behind me and everyone can get back to some semblance of normality. A welcome change.

On the mend

Mike's awake enough to be entertainingly grumpy this morning. He's in pain, of course - abdominal surgery will do that to you - but he's now controlling that with oral medications.

I was over in time to catch Dr. Teenager and Dr. Hunter this morning as they were doing rounds. They said pretty much the same things they did yesterday - the tumor was a bit larger than expected, but the surgery went well and all the lymph dissections and the surgical margins were negative for cancer - and added one thing that we did not hear yesterday: the tumor was stage 3 (T3), invasive of the fat cells around the bladder. Or to put it another way, it's a damn good thing that Mike didn't wait around to resolve insurance shenanigans before scheduling surgery.

I expect you'll be hearing from him today.

- Kevin

"Negative" is a wonderful word.

We just talked to Dr. Hunter. Mike's out of surgery, everything went fine. The margins - the bladder tissue around the tumor - were negative (as in, no signs of cancer), as were the lymph samples they took.

It's hard to convey the sense of relief that went through all of us with those simple words. There's no sign of cancer in the remaining bladder tissue, no complications during the surgery, negative negative negative.

The tumor was about 3cm, and Mike only lost about 10% of his bladder.

This is, honestly, the best outcome we could hope for.

*update*

While I was typing the above, a nurse came and got us; Mike now has a room of his own so we're moving our camp. He'll be in post-op monitoring for about 90 minutes (or so; it varies a bit) and then will be moving to his own room. Dr. Hunter is expecting that Mike will spend two nights here and then go home, but we'll see how things go - if he's unusually quick to recover he could be out of here Wednesday, or it could take until Friday until he's able to walk, eat and has the post-operative pain under control.

- Kevin

Updates on surgery

Mike went in to the OR at 10:22. I just got a call from the nursing staff, letting me know that they actually started surgery at 11:25.* 

According to Dr. Hunter yesterday, surgery may take 2-3 hours, depending on how fast they can get results back from the lymph nodes they're extracting during the procedure. After surgery, Mike will be in recovery (from the anesthesia) for a couple of hours. On Friday, he was out of recovery in an hour, but then again, he was only under for about 15 minutes for that procedure. He'll be under for a lot longer this time, so I am expecting it will take longer for him to recover. 

We (current set: me, Mom, Jen and Ray) are in the Family Waiting Room on the first floor of the Alfred building. Some time in the next few hours, probably when Mike is out of surgery and in recovery, he'll be assigned a room, and we'll move to the Family Waiting Room near there. 

Some notes on the FWR experience... here at Alfred 1, there are three TVs with the sound off but closed captioning turned on. At this time of day, we have a two different news channels and a soap opera. This is an upgrade from earlier, when one of the news channels was running long-form infomercials. it makes me miss the House marathon from Friday, honestly. 

The room itself is pretty nice - decent chairs, about half-full at this point. There is a monitor showing the status of patients (they use ID numbers to protect privacy, two vending machines (one Pepsi and one snacks), magazines, games and puzzles. Ray has set his sights on a 550-piece number. 

As long as I'm talking about the experience, it's ranting time. 

The Mayo St. Mary's Campus approach to numbering floors has some crazy in it. If you step into an elevator, you'll see buttons for G, M and 1. I think that's Ground, Main and First floors - all of which are synonyms for "the primary ground-level floor of the building." Not at Mayo St. Mary's, though. M is the ground-level floor, G is the basement, and 1 is what you and I would think of as the second floor (unless you're European, in which case you'd think of it as the first floor). 

And what is up with the room labels? Outside the door of every patient room, here is a small plate that reads something like "Al 1-204" and immediately below it a much larger plate reading "Alfred 1-204".  I don't see why the small plate is needed...

- Kevin

*When I started writing this, that is. It was 11:38, if I recall correctly. 

Quote of the day

So we're in the family waiting room, and Jen and Ray go to check on Mike. Since we're not entirely sure which way is which (with our extensive minutes of experience with the Francis building), this involved peering around the nurses to see if they had the right room.

This prompted one of the nurses to ask them:

"So are you with 41, or do you just like seeing people get shaved?"

To clarify, they were shaving his wrist to prep for the IV.

I know what you were thinking.

- Kevin

7:30 Call

I need to report for surgery at 7:30 am. Good thing we're in a hotel across the street. The surgery will likely actually get under way at about 9, and will take 2 or 3 hours. Recovery will take an hour or so, and then I'll get into a room, so likely by early afternoon. The other good news is that I'll be in the hospital for less time than we has originally thought: just 2 or 3 days. So I'll be home by the weekend.

Negative, Partial Cystectomy

So we got done with Dr. Hunter a while ago. Good news: the random bladder biopsies came back negative, which means thatch cancer has not spread. (there is still cancer in the original cancerous area, of course). This means that Dr. Hunter has agreed to do the Partial Cystectomy, which means he'll take out a piece of the bladder and put it all back together again. If the biopsies had been *positive*, he would be removing the bladder altogether, creating a new "neobladder" from large intestine, and taking out the prostate completely. If you don't know what the prostate does already, do a little research into the function of the prostate and you'll be able to see why we men like to keep it if we're able.

To review: I'm doing the partial cystectomy, I get to keep the bladder and prostate. I'd definitely relieved.

I will need to undergo cystoscopies (a look into the bladder) every 3 months for 2 years.

Surgery will take 2 or 3 hours and I should be out of recovery by late Tuesday afternoon. Hopefully in time to groggily wait on hold with Hennepin County.

Total cost for today and tomorrow: $46,000.00. Total cost in the last 7 days: $66,745.

Gonda 7 South

An update from the Urology waiting area at Mayo, Floor 7 South of the
Gonda Building at Mayo. The pathology is behind, so we're waiting a
very long time.

Over the weekend we had a brainstorm: the original Notice of
Termination that was sent to me at my old address should certainly
have been returned back to Hennepin County by now. Shouldn't it just
be sitting in my file or something? Couldn't they just open that
letter and fax it?

So, this morning I called Hennepin County (the people qho administer
my MinnesotaCare case) right at 9am when they opened and waited for an
average wait time: 25 minutes. I talked to Rhea, who was personable. I
left out the bulk of the details, focusing on the fact that I wanted
her to check in my file and see if there was a letter of termination
in there. She put me on hold, did some checking, came back and told me
that it had been faxed out on Friday. This surprised me, since the
number it had been faxed to *was* a fax number that I had given them
on friday, but it was a fax number that they were to send it to when
the new (4th request) Termination Letter came in from the Department
of Health and Human Services in order to expedite it. Bear in mind
that they told me on Friday that it would take two weeks for this
termination letter to come in. Which made me finally decide that that
these people are just totally pulling information out of their as*es.
So anyhow, Rhea tells me they faxed it. We call and check the work fax
at JL's work (office of 5 people) and no fax waiting for her.
So I call back to Henepin County. This time only about a 15 minute
wait on hold. I actually get Rhea again and explain the missing fax.
She mentions that they have 7 days to respond to fax requests, but
that she'll see if she can get it out today. I give her Karen
Wandmacher's fax number at Gallagher. I'm heading out ot town to
Rochester and don't have time to wait by a fax. Its time for Karen to
start doing something here, anyhow.

It occurrs to me that Rhea may have just been reading a note in my
file -- left last friday -- that they *should* fax the form to JL's
work fax when it comes in (left on friday the 15th), and incorrectly
interpreting this as a note that they *had* faxed it on friday the
15th. As of 4 pm today, still no fax recieved by Karen at Gallagher.
As brother Kevin put it, its time to start kicking over anthills. I
talked to the state Ombdsman's office (who gave me the number of the
Healthcare Accessibility Department) and a Place called Portico
Health. I don't know what Portico does. Something to do with health,
I'm guessing, but their number was given to me as possibly being able
to help and i'll take all the help I can get. Kevin talked to my
Hennepin County Commissioner and we have figured out who my State
Senator (Linda Berglin) is. I've known Sen. Berglin(though her former
assistant) for about 20 years, so I feell pretty confident that she'll
help if she can.

The main problem is that no one at Hennepin County Social Services
appears to give a sh*t about this. They have made nit one but 5
mistakes in a row on this and refuse to take ownership and just fix
it. They grudgingly answer the phone, tell me something to put me off,
and then terminate the call if it goes too long, knowing that I'll
just call back if I'm really serious and that the next person in line
will go through the same motions

ANother thought has occurred to me that really steams me: I'm getting
poor customer service becuase I don't matter. I'm serviced by Team 261
(Adult Services). Becuase I'm "poor". Don't forget that you can
actually get MinnesotaCare if you make up to (what I seem to remember
as) $27,000 a year. You can have up to $20,000 in assets (savings,
stocks, car, etc.) I know a lot of people who make less than that and
have less that $20,000 in assets. Students are perfectly eligible, and
its generlaly better and cheaper than student insurance plans. This
isn't welfare: It's designed to fill the insurance gap in a way that
the government isn't doing. So, yay, Minnesota. But I vote to fire
100% of the people currently administering it, since they suck.
So: do they actually *have* the form and they're trying to get around
to faxing it today, or did Rhea just pull some random info out of her
a*s as Hennepin County Social Service Team 261 so often seem to do?
And, if they think they sent it, have they closed the file?

As of 6pm, nothing faxed today. Of course, Karen leaves at 3:30. Sigh.
Tomorrow, I will spend most of the day under anesthesia and then in
recovery, so it will be difficult for me to keep beating the bushes on
this issue. But i will. I will be in my bed with tubes and wires
attached to me waiting on hold with Hennepin County Team 261. Just
like any other day.

WTF do you mean, "the path's not ready"?

We're back in the waiting area. Dr. Hunter came in, moments after that last post, and told us "the path's not ready." "Path" means "pathology report" and despite the biopsy having been taken on Friday morning and it now being Monday afternoon, it's not done. Aaaargh.

So they want to use their room for other people, understandably, and asked us to move back to the waiting area. Aside from the Muzak (and the delay) this is a good thing, as it has a lot more (and more comfortable) seating.

Still, annoying.

- Kevin

Waiting, continued

We're in the room waiting now. So we have that going for us. Based on my experience (which, I should point out, is with lesser hospitals), the amount of time one spends in the roo. Waiting for the doc is equivalent to the amount of time one spent waiting to get into the room. Based on that, we have at least a half hour left.

Isn't this thrilling? I feel like Wolf Blitzer must, standing in front of those giant monitors,waiting for any kind of actual development in the story of the day. It hadn't occurred to me to feel pity for him, so it seems today is not without its upside.

- Kevin

The waiting game

... is not a fun game. We're now 54 minutes past the time for our appointment. Mom is (understandably) somewhat bitter about being forced to hurry her lunch so we could get up here in time.

For my part, I enjoyed having a reason to dispose of the execrable chicken that dishonored the name of General Tso. Henceforth it shall be known as Private Ronald's Chicken, due to its uses of McNugget knockoffs.

I do hope, dear reader, that my attempts at humor do not seem strange in this the most humorless of circumstances. It's how I deal with stress.

-Kevin

Elevator music

We're back in Rochester. Today's agenda is a meeting with Dr. Hunter, Mike's surgeon, to find out the results from the biopsy on Friday.

We got here just after noon, and then spent some time in the Very Imposing Marble Lobby of the Gonda building. Mayo continues to seem like an operation that really has its shit together. Mike says it reminds him of Disney - they've thought about the experience they want to create and are making sure it comes through.

Clearly, this does not apply to the food served in the Gonda cafeteria, which was terrible. If General Tso was served his namesake chicken and it tasted like the version they serve here, he'd have ordered the village razed. I'm just saying, is all.

After the meeting with Dr. Hunter, we'll be checking in to the fabulous Blondell Hotel, just across the street from the Mayo St. Mary's Campus, which is where the actual surgery will take place.

Somin and Garfunkel's "Sounds of Silence" is even more schmaltzy in a Muzak version. I'm not sure what the effect is supposed to be, but I find it kind of depressing. Kind of an odd choice for a hospital waiting area. Now it's tone to something that sounds like the romantic music from an early Disney movie.

So yeah, you're getting stream-of-consciousness live-blogging of the waiting experience. At least I'm using punctuation, so you can thank me for that.

- Kevin

Back Home

A loooong day today. My discharge instruction pamphlet mentioned that -- because I'd been under anesthesia today -- I should take it easy the remainder of the day and refrain from making any important decisions or signing any legal documents. So naturally I spend the entire car ride home arguing with MinnesotaCare and Hennepin County (who Administers MinnesotaCare for me).

No termination letter today, and so I called again to find out why. The person I talked to today mentioned that -- since they'd sent me a screen shot of the page in their system that says I owe zero balance and don't have coverage currently -- they didn't actually send me the termination letter 'd requested a few days ago. They had a record of something having been sent from their office, so they didn't do anything else.

I have already checked and MCHA has assured me that this screenshot printout won't suffice: they need the actual Termination Letter. A reasonable request, one that they're allowed to make by law. Me actually *getting* a Term letter is also required by law, and a reasonable request. On the phone today, I requested (for the fourth time, if anyone's keeping track) that Hennipen County / MinnesotaCare send me the Termination letter. The woman I spoke with today mentioned that she could do that, but it takes a minimum of 2 weeks to get the Term letter from the state. This is a longer timeframe than I've been told before. Usually they have been saying a few days, but the woman today was adamant that it is a few weeks.

If I don't get the termination letter into MCHA by 10/29, MCHA can flush my application: they only have to hold it for 30 days. Who would have guessed it might take more than a month to get a termination letter?

Still hopeful (for some reason, despite repeated setbacks) that Hennepin county will actually get me the term letter, that MCHA will take my application , that MCHA will approve me, and that they'll retroactively cover my Mayo costs.

I also left a second voicemail with the supervisor at Hennipen county in the department that oversees my case. This is the second message I've left now with her, detailing how frustrated I am with the lack of response and bumbling, keystone cops-esque, comedy-of-errors that is Hennipen County Social Services. I said this in a very nice way, of course.

On the plus side, Mayo is a place that truly deserves its world-class reputation. Oddly, the efficient, silky-smooth operation of everything reminded me of Disney or like any high-end resort or 5 star restaurant. seamless integration of departments; knowledgeable, friendly people; efficient business practices; top-notch customer service and medical care. They're not perfect, of course: the cafeteria is only adequate. But in every way that really matters they're consistently excellent. If you stop and look confused for a moment there will be a greeter waiting to point you in the right direction; signage is everywhere and the check-in process from walking in the front door to sitting on my bed-for-the-day was less than 15 minutes -- and when we walked in there were at least 20 people checking in at the same time. The check-in reminds me more of an airport check in queue (except much, much faster) with 3 lanes labeled "5:30 am check in", "5:45 am check in" and "6 am check in". Clearly, they change out the signs every 45 minutes or so all day long. Pre-op is a large room with 36 stations, and the anesthesiologists, nurses, nurse-anaesthetists (one team per patient) introduce themselves and clearly spell out everything that they're going to do. Every aspect appears to have been honed and refined to provide the best patient care and while to doing it profitably and efficiently. I applaud them for demonstrating that its possible to be both attentive and profitable, proving that one does not have to exclude the other. They take regular insurance (assuming you have it...) so its not just for oil sheiks and the like. Anyone can be seen there.

In all, the Mayo experience is worlds apart from Fairview Southdale (where I had my first biopsy with Dr. Ungawa). Admittedly, Southdale is commonly thought of as one of the worst hospitals in the Twin Cities.

On the road again

Of course, the doc showed up as soon as Mom and I went to get lunch at the cafeteria. We got the signature we were missing on Mike's prescriptions, so they could get filled. Now we just need to drive back home.

Out of recovery, recovering

10:30 AM

Mike's back in his room, with the bunch of us in attendance. He's alert and impressed with the system and the level of care at Mayo. You'd think it was a world-class hospital or something.

Next up: more waiting!

Recovery time

9 am.

Got distracted by the House MD marathon on USA, so I didn't update earlier. Now we wait for him to come out of the recovery room, which takes somewhere between 1 and 3 hours.

Yes, it's as boring as you imagine it to be.

Dad and Jean are here as well, so we have a pretty full set waiting.

Procedure start

8:21 AM.

We missed it, actually - we went out to survey the Blondell Motel next door. Seems like a nice place, and the guy working the desk (who may well be the owner) was attentive and caring. Mom, Jen and I booked rooms starting Monday, figuring we'll be here for the conversation with Dr. Hunter on Monday and that surgery on Tuesday may well be early in the morning again.

Anyway, Mike is in now. What he was told yesterday is that the actual biopsy would be about 15 minutes, so I'm expecting to hear that he's moved to recovery any minute now.

A routine biopsy doesn't really deserve this level of play-by-play, of course, but it gives me something to do.

Once more into the breach

6:35 am.

We're at Mayo - me, Mike, Jen, Mom - after an early morning drive. Mike just headed off to the surgical theater for the biopsy. The procedure is supposed to take about 15 minutes, but will be preceded by anesthesia prep (in addition to the induction he's already had). Then 1-2 hours of recovery, then he'll be back in the hospital room where we can see him, and the he has to demonstrate that he can walk and "empty his bladder" as one nurse rather delicately put it.

With the (obscenely early) start, we may be out of here by noon. I'm not counting on it, though - I prefer pleasant surprises.

Mayo (St. Mary's campus) is nice, and the nurses are professional and caring. Good signs.

More later.

O Dark Thirty

Yep, the time is not a typo. Mayo has an automated number that patients call at 8:15 pm the night before surgery to find out what time your procedure has been scheduled for. My surgery is scheduled for 7 am, with a 5:45 am check in. In Rochester. 1 1/2 hours away. So, yeah, we're all up at 3 am. Today I'll do the biopsies. Financing/insurance still unresolved, but the next appointment they offered me if I had to cancel this one was December 14th, 2 months away. So its bite the bullet (and hope that all the verbal assurances they've given me that it will be retroactively covered are accurate) or risk a huge delay. There's a lot of faith needed at this stage that it will all work out. Total cost for yesterday's blood tests, office visit, CT analysis and today's biopsies: $18, 745.

Appointments galore

For those of you keeping score at home, here's the rundown on the events of the next few days, assuming things go according to plan. Plans having "gang aft agley" in the recent past, I hope you will forgive me if things change.

Thursday (today): Mike's at Mayo for bloodwork and handing off CT scan disk.
Friday: Back to Mayo for biopsy.
Saturday and Sunday: a relaxing weekend spent wondering what the hell the biopsy shows.
Monday: Meet with the surgeon at Mayo to find out biopsy results and get surgery recommendation
Tuesday: Surgery (at Mayo, of course)
Wednesday-Monday: Recovery at Mayo

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...

The Bends

I have been off line so much partially because the chemo appears to be affecting my eyesight as well, making me slightly more farsighted temporarily. Focusing on my iphone for any length of time gave me piercing eye/head pain. And I just moved and haven't set up the computer yet, since I don't have a desk. 5 steps forward, 6 steps back. I love the new house though and am busying myself by getting things sorted here. It is a much healthier place to be in than my last apartment which was cramped and dark. Kaia loves her yard as well.

In general, Im feeling like I have the bends. I've never had the bends, but this is my idea of what they would be like. My joints and muscles ache, chest feels tight. I feel unsettled, restless. Fevers come and go. Having a hard time sleeping, even with Ambien. Nausea is slight yet constant.

Yesterday was perhaps the worst day yet as far as general malaise goes. Up until this point my biggest concern had been the nausea, which was fairly well controlled. I had been thinking, if need be I could easily do another round if they wanted. Yesterday I began thinking that I'm not sure if I would. Or at least, I'd likely have an anxiety attack as they're putting the needle in, knowing what was on the other side.

The nice thing is that hopefully this is it for the chemo. The tumor is shrinking (this is my intuition and observation talking). This will be confirmed by the CT, then we'll start talking about surgery. That will be adventure #2, about which I am trepidacious. I am likewise looking forward to getting through it all and looking back on this from the perspective of time. May not have much more to report until the CT scan on 9/7, as I should be steadily improving until then.

Last one?

Round 3

Have been offline a lot recently, spent last weekend moving with the help of many kind people. It was a little like an Amish barn raising, everything got packed, loaded, moved, unloaded and unpacked in a matter of hours. It was a sight to see and it was timed mid-month to take advantage of the end of chemo round 2 when I would be feeling the best. I was feeling pretty good, actually, just a tiny bit tired.

It's cool to be in what feels like my own house and to know that I'll be here for awhile. I've been trying to go through my stuff and figure out what can stay, what doesn't fit, etc. IKEA is my new best friend. Also it's really nice to not have a hyperactive 2nd shift upstairs neighbor rearranging furniture every night of the week at 3 am.

I'm at the clinic for my final round of chemo, this is the cisplatin and gemzar. Next week I'll get just the gemzar, and then that's it for round 3.

The plan is: after the next treatment I'll get a CT scan. If the tumor has shrunk, I'll be cleared for surgery and will have that in early November at Mayo. A week in the hospital for the surgery, another couple of weeks with very limited mobility, and them hopefully all done with this entire business except for occasional checkups.

Feeling enormously tired right now, but I know it's not the chemo since I'm only getting saline right now, no actual IV drugs yet. But I did take the Emend this morning (my prescription preventive anti emetic). So that must be kicking in.

Another One Down

Chemo round two over with, and energy feeling very good. No nausea left and feeling quite normal except for the hair loss, which continues but is now somewhat irrelevant due to the recent head shaving. I'm still adjusting, but it's growing on me. No pun intended.

I spent the weekend at the Dublin Irish Festival. Sadly, it was Dublin, Ohio and not Ireland. But still: the nicest Irish fest I've been to yet. Big, clean, well run and plenty of good acts. I was here with RY and GH. RY was brought out from The Cities to run sound for an internationally touring Irish band, considered by many to be one of the best Irish bands the world in their genre of traditional session style Irish music. Being associated with the band by extension meant I got to spend time with, get to know and play music with musicians that are at such a high level of skill and musicianship that people would pay a great deal for the opportunity. I managed to get invites from these people to play, jamming until 4 am. A wonderful time.

This is a rare opportunity for the bands as well. They all tour most of the year, but don't have as many opportunities to be all in the same place together all weekend, so they swap songs and stories, bum cigarettes, talk nose to nose and buy each other drinks. It was a reminder to me of how hard the touring life can be. Not necessarily physically, though it can be that too, but emotionally. For most bands like this, the only people they can count on are the bandmates, everyone else they see and interact with changes from day to day. Having a relationship, a dog, or even an apartment is frequently impossible. This weekend was a chance for these musicians to see not just fellow countrymen and women and hear familiar voices and accents... but to see genuine old friends that have their own tour schedules year round so their paths rarely cross. It was lovely to watch and I'm happy for all of them to have these sorts of opportunities.

this week I'm packing to move, which will be be on Sunday the 15th. Chemo the following Tuesday, which will hopefully be the last round. I also need to work on switching my health Insurance this week, which will mean that I am have Dr. Hunter at Mayo do the followup and schedule the surgery. Hopefully this will all be done with by thanksgiving.

Round 2, Part 2.

Off to chemo again shortly with JL. This will be the first time for her seeing the actual process firsthand. It's actually fairly boring in general, but I get nervous with the needle sticks to get the IV in. Once that's in and running, it's fairly easy.

Today I will get only one drug: the Gemcitabine (Gemzar). This one is easier on the system, causing only a little nausea. The first day of the cycle (which was last week for this cycle) they give me the Cisplatin and Gemzar, plus a steroid, plus a whole bunch of saline since the Cisplatin is so hard on the kidneys. Luckily the IV is on a pole and I'm allowed too e around, 'cause I have to get up to use the bathroom like every 1/2 hour of the 5 hour treatment with all that liquid going in.

In my first round they also gave me an IV steroid, but that kept me up and unable to sleep well for about 3 days. I have talked them into giving me no steroid at all with the Gemzar, so I may be tired tonight but at least I will sleep.

Last week was rough, in all. Upping the Cisplatin plus just the cumulative effect of this all meant that I was good for nothing whatsoever on Thursday and even Friday, and have felt nauseous and tired all week. Yesterday the appetite was coming back slightly, and I slept well on Saturday night, not as well last night.

In all, the recovery back to 100% seems to be taking a little longer each week. Since this experience is so different from person to person; there really isn't a "normal" here. The course, type, delivery and duration of chemo varies so much from one patient to the next (depending on the cancer's location, severity, stage, age of patient) that reports from other people regarding the severity or lack thereof of their own chemo experiences are helpful Information, but still somewhat irrelevant to what I will experience. Even the docs cant tell me 100%: they can give good guidelines for what's normal with my drugs and regimen, but really there's no way know exactly how it will affect me until I'm in the thick of it, or looking back on it from the perspective of time.

New day, new look.

Definitely on the mend. I think Thursday was the low point in my blood cell counts. This round felt a little worse than the last, possibly due to the increased Cisplatin dose that I got last Monday (from 140 to 170 ml).

The nausea has been worse, overall. Today I was actually woken up by nausea (not recommended, if you can avoid it) but have felt otherwise much more like myself. The mental fog I was in yesterday --seeming dangerously close to black-out level if I'd sit up too quickly -- is mostly gone today. I felt queasy and motion sick just from nodding in agreement yesterday.

The key, as everyone keeps telling me, is in the eating. It keeps the nausea away and keeps the energy up. But when nothing sounds good, and in fact every food you can think of seems a little stomach-turning, it's a real conscious effort to eat. I've always been blessed/cursed with a decent appetite, so this part of it is very new and strange to me.

JL shaved my head last night. I was stressed about the transition and she admitted that it was helpful for her to be a part of it as well. It was and is shocking to see myself in the mirror still.

The process of shaving ones head actually takes awhile, involving at least 3 steps. First a clipper is used to get down to a military buzz cut length, but those only get it so short. From there, shaving cream and a sharp facial razor got it down to almost nothing, but several passes were needed. Finally my new electric razor finished the job. It was JL's first head shaving, and she did great. I still have the same number of ears that I started with, and no nicks or cuts at all.

I've been sleeping oddly, which is about the only way that I can find to describe it. I'll wake up in the middle of the night to use the restroom, certain that I've been asleep for 6 hours or more, only to find that it's only been 50 minutes or so. I wake up 5 or 6 times during the night but sleep very deeply when I do sleep. This without sleep aids. Though I might get back on them tonight.

Hopeful that the recovery will continue nicely, and that the next chemo treatment (scheduled for Monday) is easier.

The New Do

Thursday

Boring title, but it's the best I can do.

Feeling very lethargic, still nauseous, dizzy and weak. Went to the acupuncturist today and that wiped me out enough that I needed another nap. Blood cell counts likely lowest of the cycle today.

Hair loss undeniable now, psyching myself up for shaving it all off tonight.

No appetite at all, but I know from experience that I need to eat something or the nausea will get worse. Just had some simple quinoa with chicken and peas a few minutes ago and the nausea is coming back down.

Another new symptom today: my tongue feels weird. Too big, perhaps. It tastes funny, and feels slightly numb, as do my lips. The feeling reminds me of something I've experienced before but not sure where. Some drug reaction, most likely. Or hypoxia? They talked about that during my pilot training... or low cell counts? No idea.

Sense of smell magnifying as well. Along those lines, I find that the more organic something is, the less it bothers me. I've given over my cologne for essential oils, and have taken to burning just white sage as incense.

Kaia (my dog) is very patient as always and seems a little concerned. Luckily, there is little in life she enjoys more than a nap, so she's very happy when I decide to take one myself.

Will post shaven-headed pix when I do the deed.

Brief update

Not much new to report, may be getting the hang of this chemo thing already: get chemo, feel crappy the next day, slightly less crappy the day after that, etc. My blood cell counts will be at their lowest in the cycle tomorrow, apparently, but by then the nausea should be wearing off. It's all manageable, just basically annoying. Hanging in there and taking good care of myself.

Keep On Keepin' On

Hanging in there today. Have been eating. Stuff is going down okay but still no appetite at all. It's a conscious process of reminding myself to do it. Speaking of which, I have a turkey sandwich on wheat from Seward Coop that is staring me down at the moment.

I had acupuncture this morning and that is a great non-medical way to fight the nausea. It works as well if not better than the prescription antiemetics, with no tiredness or "hangover" later. Truly, the acu is powerful medicine.

This Ain't No Mudd Club / Or C.B.G.B. / I Ain't Got Time For that Now

And just like that it all starts again. Back to the nausea, sense of taste all whacked. The Chemo is working.

I just took a two hour nap, trying to beat the window before the I.V. Steroid kinks in and I *can't* sleep tonight. When I laid down a fresh chicken burrito from Chipotle or Burrito Loco with beans and cheese and sour cream was sounding awesome.

That was then, this is now. With the first waves of nausea starting up, I know that the best thing is to get some food in me or it will only get worse. Nothing sounded good, so after staring at cupboards and fridge for awhile I selected a plain organic brown-rice ricecake. For the record, this really didn't sound good either, and they're bland at the best of times. But the blandness was what I was after. It tasted like cardboard, or maybe more like moldy cardboard. One of those off-taste moments like swigging milk right after drinking lemonade.

My stomach nearly rejected the first bite, and honestly it tasted terrible. Bland would have been preferable. I just had one from the same pack with peanut butter on it a couple of days ago and it actually tasted good and slightly sweet. Today, I ate 3/4 of the ricecake and am still getting up the courage to eat the last bite. At least it settled the stomach a bit.

The catch 22 of all of this is the lack of hunger and the odd sense of taste and smell leading to lack of eating, which leads to nausea, which makes me *not* want to eat, which makes the nausea worse. It's a weight loss plan that is ironically doctor-caused yet not doctor approved. I lost 10 pounds in the first week of chemo.

I don't recommend the process or the other side effects, but not eating at all sure makes the pounds fly right off.

This Ain't no Fooling Around

Back from Chemo. It went well, no nausea at all at the moment, really feeling just fine except I'd like to take a nap, which I will shortly. The steroid will kick in tonight and make it hard to sleep, so I need to take advantage of it while I can.

Oh, and out if curiosity I asked the nurse for the cost for the Chemo: about $5,000 per round (thats for 2 days of treatments, bloodwork, chemo drugs, doctor and nurse time, etc) or between $15,000 ad $30,000 for the whole thing (3 to 6 rounds). When I go to MCHA for health insurance I will hit my yearly out of pocket max within my first visit of the round. That first visit will hurt (the $3,000 that I will personally pay) but all health care will be 100% covered afterward for the rest of the year. Health insurance: it's a necessary evil. My guess is that this cancer stuff will cost my insurance company $70k-100k just this year alone. Ouch. I'd better run for governor or something, since Minnesota is doing a lot for me. I feel like giving back.

This Ain't No Disco

Had labs drawn (everything looks great) and met with the oncology Doc, Dr. Grampa. He said 3 to 4 rounds of chemo, which means about 6 to 9 weeks more of this. Surgery to follow about 30 days after last treatment. This isn't new information, exactly: just a clarification. I was told originally that it could be up to 6 rounds.

Chemo finally underway at about 10:45 am.

They had some troubles getting the I.V. In, it took 2 nurses and 3 sticks. After the first unsucessful one, I get more and more jittery, so that makes their job harder as well.

Feeling dizzy and tired from the Emend pill and from the Palonosetron I.V. injection (more anti nausea). IV saline running now. Actual chemotherapy drugs yet to come.

This Ain't No Party

Up at 7am so that I can make it to the Pharmacy right at 8 to pick up my Emend, the anti-emetic (anti nausea) pill that I have to take 1 hour before the first day of chemo in each round, and then once a day for the next 2 days.

While showering, noticed the first of the hair loss. It's slight, but I've been keeping a close eye on it since I started chemo 3 weeks ago, and this was the first day of hair loss. Likely will shave head this week. Another reminder that this is some serious sh*t: I've been feeling so good recently that its easy to forget that I'm doing Chemo.

Speaking of which, off to chemo on a few minutes. This is the long treatment that will take 4 or 5 hours hooked up to an IV. My mom will be there as well. The treatment itself isn't all that bad, and they actually make the patients very comfortable while there, with flatscreen HD tvs, leather vibrating heated la-z-boys, juice on demand, etc. And so far everyone at the clinic has been extremely, hugely kind, and the nurses and docs are very knowledgeable, experienced, and genuinely caring. It's a certain kind of person that goes into Oncology, since one has to be aware that patients are very sick and may not get ever get better, but so far I'm feeling it's the cream of the crop. It doesn't have a sad hospice feel, which is what I would have expected. Instead, the nurses feel more like awesome flight attendants (of which there are none in the real world) if that makes any sense: good natured, even jovial, anticipating all of your needs, answering all of your questions, tailoring the experience to fit your situation and checking in on you constantly.