Do your family a favor. Write a will.

Michael died without a will.

He and I talked about things a little bit, and in our last night together, his first night back in the ICU, he wrote some notes about his wishes for some of his instruments and other possessions.

But he did not have a will, which means we are going through probate. This is annoying, but not critical, at least so far. I happen to have a friend from college who is a lawyer, so I have someone to take me through the process and keep me from making any mistakes.

Michael and I did do some things to prepare, like making sure that I had knowledge of and access to all of his various online accounts - this blog, his email, bank accounts and the like. Please note that I am doing nothing with the bank accounts, as that would be illegal, but knowing where they are is going to be a huge help in sorting out his estate.

I understand why he didn't want to make out a will. It involves thinking of yourself as being dead, which is a hard thing to do, and many many times harder when you know that you are indeed going to die soon. It was hard for me to bring up, and I wasn't the one who was dying.

Today, I'm asking you to do something for your family.

Actually, several somethings.

1. Make out a will. Get a lawyer if you can afford it; if not, at least write our your desires and get it notarized. There are a lot of sources for doing this online; depending on your state, the rules vary.

2. Make sure all of your bank accounts are "POD" or "Payable on Death" so your heirs won't have to get affidavits to get your money. If you have a safe deposit box, get your executor or heir added to that as well.

3. Make sure your online accounts are accessible to your heirs - some sites, like Facebook, do a nice job of allowing relatives to easily request that a user's profile be "memorialized" but not all do. I use a password manager (LastPass) to keep track of all the sites I use, my usernames and my passwords. This has a side benefit of making it easy for me to use unique complex passwords for every site, increasing my security while I am alive. And after I am dead, my heirs can use one password to unlock everything.

As soon as we get through dealing with Michael's estate, Christina and I are going to meet with my friend the lawyer and get our wills in order.

On the nature of unintentional expertise

Michael entitled this blog "The Unintentional Expert" because he was in the process of becoming an expert in something that he'd never intended to study - cancer, or more precisely his own cancer and his journey through surgery, chemotherapy and ultimately his own death.

It's an apt title, because he acquired many kinds of expertise in his life, often without apparently intending to do so.

An example: During his long hospital stay in May 2012 for acute renal failure, he had dialysis. But unlike a lot of patients undergoing dialysis, he actually knew a lot about it, because at one point in his career, he spent a couple of years working for Gambro, a multinational health care company specializing in dialysis. He was a communications specialist, and he wrote articles for the newsletters that Gambro published. In the process, he learned a lot about liver dysfunction, so when he went in for acute renal failure, he knew what that was, and that it was better than chronic disease, because acute problems can be treated and possibly cured, while chronic problems are there to stay. He knew what the machines were going to look like, what the process was going to be, what was actually going on with his blood in the machine, and a host of other things.

He was like that. He learned things all the time, and he did so many things in his short life that it feels like I'm going to spend the rest of my life discovering new things about him. In a way, I'm becoming an unintentional expert myself, in the field of Michael.

I think that's a good thing.

- Kevin

What does a memorial gathering mean?

For us, it means that we want to give Michael's friends and those whose lives he touched, as well as those who want to pay their respects, a chance to gather and do so. A chance to reach out to those of us who are suffering the most from his loss and tell us that you care.

We will be at the Nokomis Chapel from 1-5 pm. There is no particular agenda, no service, no need to bring anything other than your memories and your comfort. Come at any time.

Memorial Donations for Michael

I've gotten a couple of questions about memorial donations. Michael loved greyhounds, and adopted many of them, including Boo, who was with him in his final hours. He would like donations to go to GPA-MN (http://www.gpa-mn.org/), the Minnesota chapter of Greyhound Pets of America.

For my part, I think a donation to the American Cancer Society might not be a bad idea. Stupid fucking cancer.

A gathering of friends and family

We are putting this notice in the Thursday edition of the StarTribune:

Matheny, Michael David

Age 45, of Minneapolis, passed June 10, 2012 at J. A Wedum Hospice Center. He was surrounded by family and friends, and will be in their hearts forever. A gathering of friends and family will be held on Saturday, June 16, from 1-5 PM at the Washburn McReavy Nokomis Park Chapel, 1838 E. Minnehaha Parkway, Minneapolis MN.  

www.Washburn-McReavy.com

Nokomis Park Chapel   612-721-1651

It's hard to capture a life in words. Michael's span of years was fewer than he would have liked, but he made the most of what time he had. He lived well and fully, and we will gather and celebrate his life.

We originally intended to have people gather at his house, but we soon realized that there's no way we could fit all of the people whose lives he touched into his tiny (but cute) South Minneapolis house. So we are taking advantage of the services offered by the funeral parlor who handled Michael's cremation, and will be using their space.

This is not the end of celebrations of Michael's life, not by any means. He wanted a proper Irish wake, and we intend to give him one. But this will give all of us whose lives he touched a chance to gather and remember him.

I do have one request. I know that many of you will want to share your sadness at losing Michael with me, and please believe that I honor that. But I have enough sadness to fill my heart forever. I have lost a brother and a friend, and I want to remember him with joy and laughter, and celebrate what we had, not just mourn what we have lost. Please share your fond memories with me as well as your grief. 

- Kevin

An ending, but not the end of the story

Michael David Matheny passed away at 12:20 pm on Sunday, June 10th, 2012 at the Wedum Hospice. He was surrounded by friends and family in his final hours, and he knew he was loved.

We are having a day of remembrance for him at the Washburn-McReavy Nokomis Chapel on Saturday the 16th, from 1pm to 5pm. All of his friends are invited to come and share memories and raise a glass in honor of a life lived well and too short.  The address is 1838 E. Minnehaha Parkway, Minneapolis MN. The number is 612-721-1651, and the web address is www.washburn-mcreavy.com.

If you need information, please email me - I'm kevin.matheny at comcast.net.

His story does not end here. His music is his gift to the world, and I am going to find a way to make it available to everyone. If you have recordings of his music, please contact me.

[Updated 6/14 to correct location - there's no way we can fit the number of people who want to remember Michael into his house]

Saying farewell

Michael is in the hospice.

J.A. Wedum Residential Hospice
9350 Noble Parkway North
Brooklyn Park, MN 55443

He's resting comfortably, with round-the-clock nursing care if he needs it, and his family is there.

The hospice is wonderful, there is lots of room for friends to come and spend time with him. He is sleeping much of the time, but he knows we are there.

 Friends are very welcome to visit. We're going to try to get Boo there on Sunday, and some of his musician friends may be able to play for him as well.

 This is a sad time, so we are crying, but we cry in remembrance of this wonderful man, and in celebration of the vibrant life that he lived and the memories he leaves with us.

 Thank you all.

 - Kevin

Hoping for hospice

Kevin here.

We are hoping to be able to move Michael to a hospice center (Wedum in Brooklyn Park) tomorrow, if he is strong enough to make the transfer. We will know more in the morning. He saw Boo today, which made both he and Boo happy.

Back to the ICU

Michael is back in the ICU. He was having trouble breathing, and they've moved him back to Station 20 so he can be on the BIPAP. This sucks, because it's hard to sleep when you have this assistive breathing device blasting air into your lungs, and it means you can't talk. But without the BIPAP, he can't get enough air. He's trying to sleep now. Jen is with him, as is Mom. I'm not sure if any of us are going home tonight.

Less sweets for the sweet, unfortunately

Michael's blood sugar is up a bit more than the docs want to see, so they're monitoring it and giving him insulin. Which means all of the sweet treats we've been giving him are not such a good idea.

So if you are planning a visit (bearing in mind new precautions and limiting visitors as before), think twice before bringing him sweets.

Did I mention before that we don't need anything else to suck? Because we really, really don't.

Visiting precautions

Michael is "C Diff Positive" -- I'm sure one of the nurses can spell out what exactly that means in medical terms. basically, the antibiotic regimen they have him on has allowed some of his intestinal flora to flourish. The nurses now have to observe additional isolation procedures, including wearing gowns at all times and gloves for every procedure.

What it means to visitors is that, in addition to "foaming in" you will also need to:
- Not sit on Michael's bed, chair or any other place where he has been sitting
- Not touch his bedding
- Thoroughly wash hands with soap and water as you leave
And if you have diarrhea after visiting, see your doctor.

just in case there was a shortage of things which sucked about this whole experience.

Still scheduled to move to Station 30 some time today, but no word yet on when.

- Kevin

Moving day - even better news

Talked to Michael's hospitalist this morning, who said he's ready to move out of ICU and back to Station 30. He's still on 8 liters of oxygen, but has been off the BIPAP for two days and is looking much better. Creatinine levels are down, which means his kidneys are getting better, and he's more alert. All good things.

- Kevin

Somewhat better news

Kevin here.

Things are looking a bit better as of this afternoon.

Michael had a rough night; his nurses accidentally pulled out his nephrostomy tube as they were moving him around (it was intended as a temporary measure so it was not stitched in). He said of this event that it "hurt less than he expected." They then bundled him off to Interventional Radiology to have it re-inserted, which proved to be a fruitless endeavor, so they made him NPO (nothing by mouth, perhaps his least favorite thing aside from catheterization), catheterized him (ouch) and started him on steroids so they could give him contrast for a better image, and scheduled him for another surgery in Interventional Radiology in the late morning.

He went down for that about 10:30 am, and that's when I wrote the preceding post, waiting for him to return. He got back to his room about 12:45 or 1:00, and I got back in to see him about 1:30. They put nephrostomy tubes in both of his kidneys this time, which turned out to be a good thing, as his right kidney was very full - the interventional radiologist described it as "blown up like a balloon" which is not a good image.

About 2:30, I got back in to see him, along with Mom and surprise visitors John and Rachel. We didn't stay too long (since they close the ICU to visitors from 3-4) but we did see him a lot more alert than he had been in the morning, with reduced oxygen demand (down to 10 liters from 15 this morning) and a good appetite - he had several bites of a turkey sandwich, a wee cinnamon roll, some pita and hummus and about half of a peanut butter rice krispy bar with chocolate. The interventional radiologist pronounced him to be "doing great" which is nice to hear.

He's been off the BIPAP now for more than a day, and our new target (according to his hospitalist) is to get him down to the oxygen level where the ICU team pronounces him "too easy" and sends him back to Station 30 (Acute Oncology Observation), where we can make a new target.

- Kevin

Limiting visitation, and how serious is this?

Kevin here.

Michael is in Intensive Care, as he has been since Sunday. This means visitors are restricted; in addition to 4 hours a day when they enforce Quiet Hour and kick everybody out who isn't a nurse or doctor, they want the fewest possible visitors at all times.

If you want to see Michael, call me or Mom or Jen first, and please be understanding if we say no.

How serious is this? Incredibly fucking serious.

His oncologist has no further treatment recommendations. This means no chemo, no radiation, because those things will do more harm than good at this point. He's in ICU because he needs a huge amount of oxygen - 15 liters/minute on the "oximizer" which is the one that looks like a snowy white mustache. For contrast, his home concentrator maxes out at 5 liters/minute. His first night, he was on the BIPAP, which is a forced air system. That's not something he can use at home, since they only do it here in the ICU. Until his oxygen needs go way down, and he can get up out of bed, he can't go home.

This is terminal cancer. That means his life expectancy is limited - less than 6 months. There's a big difference between median life expectancy and reality for an individual, though. Since he's allergic to the contrast dye and has kidney issues, the doctors aren't ordering scans that could assess the progress of the cancer. So we don't know how long we have.

I'm hoping like anything that we have a long time left, and that he gets to go home and enjoy his new back yard, and play music with his friends and have visitors. But the reality is that we don't know how long we have, so we have to make the most of the time we do have. He's in and out of consciousness, between the pain medications, anti-anxiety medications, low oxygen level and exhaustion, so texting or emailing him is the best option. He may not reply right away; please don't be offended. You can also comment here or on Facebook if you are connected there.

Thanks for all the well-wishes and prayers. They mean a lot.

 -Kevin

Hospital time again

Kevin again.

Michael is back in the hospital again.

This morning, as he was having a lovely brunch with Ray, Gabriel and Jen, the home care nurse came by to re-wrap his legs (which are swollen as a side effect of either the kidney problems, the cancer, or both) and do a "basic metabolic profile" which include checking his blood oxygenation level. He was at 78, which is very low, so she sent him packing to the ER. In the ER, they put him on a non-rebreather oxygen mask and 11 liters/minute of oxygen. This got his O2 levels up to somewhere reasonable, but we still don't know what's wrong or how to fix it. A chest x-ray shows something is up in his left lung, which was the case previously. Whatever it is, it's notably bigger than it was two weeks ago, which the radiologist says makes it unlikely to be a metastasis, since that would not have grown so much so quickly.

Possibilities are:
1. Fluid in the lungs
2. Pneumonia
3. Metastasis
4. Some combination of the above

The problem they are having now is that it's hard to tell exactly what is going on without a good scan of the chest with contrast dye. But giving someone contrast dye when they have kidney issues is a bad idea, and Mike has had allergic reactions to contrast dye in the past, making it a really bad idea. So for now, they're going with broad-spectrum antibiotic in case it's an infection, diuretics to reduce fluid levels in case that's the problem, and standing ready with BIPAP in case he needs even more O2. This means he's in the ICU, since the BIPAP is a tight-fitting device, and if he vomits with it on, things will get bad very quickly.

 More news when I know more and get a chance to update. -Kevin