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.