Friday, December 14, 2012



Life After Michael, Six Months On,
How Are We Changed?

Aching loss and constant awareness of his absence. Sadness and bitterness at his life left unfinished. Surrounded by his beautiful, well crafted and quality things. Pain from sudden memories like  lightening bolts. Joy for his music and the sound of his voice. Grateful that he escaped death so many times. Thankful that he was in my life for so long. Awed by all he did in his short life. Amazed by the number of people who loved him and were touched by him.

How do I remember him, honor him and yet go on with my own life?
How has his death changed me? Do I live differently?
Has the sorrow marked me and set me apart?
How have his friends been affected by his death?

What did I learn from Michael? 

I see that I am gentler with myself and others.
Gentleness was always my way, but I more quickly give permission to myself and others to be imperfect and incomplete.

I want to do things I have left undone.
He was so tenacious and pushed the envelope so hard.
I had given up on making any further mark or contribution.
I was old and failing so why even bother to try.
But I saw that he fought every day, not just to live, but to fulfill his dreams.
He planned, until the day he died, to get up out of that bed and have a good life:
to marry Jen, buy a house with her, finish his album, write more music,
become a teacher, go to Holland with his Mom and his brother,
travel with Ray and Gabriel, raise greyhounds,
enjoy the company of his family and friends ...

So, I have a life, a good life, and damnit, I better use it well.
That's what I learned from Michael.

Other Lessons Learned:

Be open and honest with my feelings.
Let sadness be there, but let joy also come in.
Be patient with others and with myself.
Be OK with retiring from the world for a day or a week when needed.
Let those you love know it.
Kiss them and hug them whenever they are within reach.
Keep pursuing the things you want from life.
Do not be discouraged, keep fighting.

My Grief Journal:

Month One
Will I survive this?
Do I even want to?
Can you die of grief?

Month Two
I guess I will live.
I seem to have chosen Life.
One foot ahead of the other.

Month Three
Soggy, tears and stress.
Saying goodbye to his house.
So sorry for all of us.

Month Four
Drowning in his things.
Everything different and changed.
Wanting the normal and comfortable back.

Month Five
Looking for focus and purpose.
Finding it in cooking and working with clay again.
Understanding that I will never be the same.

Month Six
Mind returning to better function.
Being busy is good therapy.
Sadness and tears are there, but do not interfere with life.


Recently Learned:
A grieving person experiences pain. The MRI of the brain of a grieving person looks like that of a person in real physical pain. But then we knew that. Right?

Tuesday, November 27, 2012

Missing Michael



I am missing Michael very deeply today. Though I miss him nearly every hour of every day, in sometimes heart stopping ways, today I want to reach out and TALK to him. I need his ideas on something that is troubling me.

He would listen to me in his you-have-my-complete-attention kind of way, respect my worries, give me insight, add his own personal knowledge, and provide help and the kind of support and balance that only he can give me because he is Michael, my son, and Kevin's Brother, the missing piece of my family. I miss you so much, Michael.



Sunday, October 28, 2012

My daughter made me cry

Nell made me cry tonight.

She didn't mean to. She was catching up with a friend she hasn't seen in a couple of weeks, chattering away about a book that the two of them have just read. They were having a very animated conversation about plot points and characters and the frustration that both of them have with the ending, and at one point Nell remarked to her friend Maggie "if anyone is hearing just one side of this conversation they probably think we're crazy."

She got off the phone, and asked me a question. "Dad," she said. "When you were little, or when you were my age at any rate, did you have a friend you could talk to about anything at all?"

I couldn't answer her, because my voice wouldn't work.

I had a brother. And I could talk to him about anything at all, and he understood my jokes, and I loved him.

The last thing I said to him, when he was able to respond, was "I love you." And through the breathing mask, he said "I love you too."

I miss him every day.

Saturday, October 06, 2012

The Long Goodbye

Michael died nearly 5 months ago; a hard, hard, thing to come to terms with. We, who loved him and miss him, have tried to find ways to say goodbye. The letting go is hard, our respect so deep, and the missing him so huge that this seems impossible to do. It seems that with a traditional (sort of) memorial, an Irish Wake, a goodbye to his house, and three separate memorial concerts, we should be able to say that we have paid our respects and completed our goodbyes.

Yes, a part of me knows that there is really no need to say goodbye to him at all because our memories of him will remain with us forever. We also have his beautiful and soul searching music to console us. And, joyfully, he was composing and recording to the end, which means that there are more recording of his music yet to come.

Nevertheless there is still one piece missing.

We found that Michael had made a list of things he wanted us to do for the wake, but we found the list only after the wake was past. As we read it we were relieved and pleased that we had done well in bringing together the people and music that he would have wanted, except for one thing. He wanted the poem, The Lake Isle of Innisfree, to be read by his friend, Bill Lochen. It was to be, I think, his goodbye to us. It seems a message that he was, and that we should be, at peace about his passing.

So I reproduce it here for all his friends and family, his parting message to us. Imagine it being read by Bill Lochen, or you don't know Bill, imagine perhaps Patrick Stewart's voice.

Posted by Mom

The Lake Isle of Innisfree

I will arise and go now, and go to Innisfree,
And a small cabin build there, of clay and wattles made;
Nine bean-rows will I have there, a hive for the honey-bee,
And live alone in the bee-loud glade.

And I shall have some peace there, for peace comes dropping slow,
Dropping from the veils of the morning to where the cricket sings;
There midnight’s all a glimmer, and noon a purple glow,
And evening full of the linnet’s wings.

I will arise and go now, for always night and day
I hear lake water lapping with low sounds by the shore;
While I stand on the roadway, or on the pavements grey,
I hear it in the deep heart’s core. 

Tuesday, September 18, 2012

Minnesota Renaissance Festival tribute show

I just got this from Michael's Gallowglass bandmate Lojo Russo:

You are invited to a special memorial show for Michael Matheny on Saturday, Sept. 29 at 5pm on the Pavilion Stage at the MN Renaissance Festival.

This show will be a time of remembrance and celebration and will include musical performances by Gallowglass and many of your favorite acts from the MN Renaissance Festival. A traditional “skiffle session” will follow these performances.
Many thanks to Carr Hagerman and the staff at the Minnesota Renaissance Festival for making this happen.

The Minnesota Renaissance Festival ("Festival" to some of us, "RenFest" to others, and simply "the Fair" or "the Renaissance" to many more) was a big part of Michael's life. He discovered it in 1983, I think. I know he talked me into going out there in 1984, in the summer between high school and college. He was assistant stage manager of Crown, where the featured act was Penn & Teller. Over the next few years, he talked Ken Larson out of being a juggler and into being a musician, met Lojo and (after some initial rough patches) formed Gallowglass Irish Trio, which made him part of the Festival forever.

There's a lot of history there, and I'm glad that the musicians and cast members will have the chance to remember Michael in the place where one of his stories began.


Saturday, September 08, 2012

Probate as a learning process

So how does this probate thing work?

Basically, when someone dies, we have to figure out what to do with their estate - the things that are legally theirs, including both assets and debts. 

Someone needs to do this work. In our case, I'm doing it, since Michael wanted me to take care of his finances. I'm getting a lot of help from Christina and Mom, and the rest of the support network, but there's a lot to do. 

First is getting the estate into probate. We're fortunate in that since Michael's assets were not significant, we can do "informal" probate. This means getting someone (me) named as Personal Representative for the estate. To do that, the primary heirs (Mom & Dad, since Michael was not married and had no children) needed to both renounce their claims to the estate and nominate me as Personal Rep. 

A note on "renouncing claims" - someone who does this is not giving up the ability to receive things from the estate, they're just declaring that it's okay if someone else (the Personal Rep) makes the decisions. 

I also have to petition the court to be named the Personal Rep. This petition needs to include an inventory of the assets of the estate. If there's too much money, or complex property stuff, then you may need to go into formal probate. That looks like it sucks; there are a lot of forms. 

Then we wait for the court to process all of this. If the petition is granted (and it was), then the court can issue "Testamentary Letters" to let asset-holders know that the Personal Rep is indeed the Personal Rep and has standing to do things like get access to bank accounts and safe deposit boxes. 

We also need to post a notice of Michael's death, to let any potential creditors know that they have a limited time (4 months from the date of my petition being granted) to make claims against his estate. We did this already. 

I opened an estate account as well, to make keeping track of all this easier. And I hired a lawyer (my friend John Fossum, who helped us with the Power of Attorney in Michael's final days). 

I got an Tax ID number for the estate; this will be needed for the final tax return. 

The next step (which I'm working on now) is to get letters out to the companies that have Michael's assets (like his bank), asking them to transfer the funds to the estate account. I haven't found a good template for that in an hour or so of Google searching, so I'm making that up. Once I get a form that works (that is, one that results in the bank just transferring funds without calling me for clarifications), I'll post it online. 

- Kevin

Sunday, August 26, 2012

A trip down memory lane

I just got back from Disney World. This was a trip we intended to take with Michael and Jen, so it was hard that he was not there.

Back in 2002, Christina and I signed up for the Disney Vacation Club - it's a timeshare, more or less, that works on a point system. We usually go every other year and stay in a two-bedroom suite, so the kids have their own room. This time, since we were intending to have another couple along, we booked a "grand villa" which has three bedrooms, a dining room, a living room, a tv area, three bathrooms, a laundry room and a full kitchen. It's bigger than most NYC apartments, I think - more than 2100 square feet, which is as much finished square footage as my house.

It's way too much space for four people, which reminded me of who I was missing. That wasn't all bad - yes, I'm still grieving, but I was also reminded of Michael and the trip we shared back in 2005.

When he was going through his second divorce, we spent a lot of time talking, and had made plans to take a trip to Disney together. He'd never been there, so I was going to get to play native guide, which is something I enjoy doing. I made the room and dinner reservations (with a lot of assistance from Christina), and he booked a flight to Orlando. We were really looking forward to it, since we were not seeing each other much, with him living in Colorado and me in Minnesota.

In between making the plans and taking the trip, though, his plans changed a bit. He was in his second motorcycle accident, which gave him some minor brain damage. Just enough that he had a hard time concentrating, making it hard for him to work full-time. It turns out that concentration is important for working as a communications specialist, researching and writing for publications. So he decided to make a life change, move back to Minnesota and return to school to get his BA in English and then pursue a Master's in education, intending to become a teacher.

So as it happened, he spent a week in Colorado packing his house (with Mom's help), then put her on a plane back to Minnesota, flew to Florida to spend four days at Disney with me, then flew back to Colorado, got into a truck and met me at my house two days later. Wild.

Our time at Disney was fun. I hadn't been there without kids since my kids were born (that's 1998-99 for those of you who don't know me), and it's a different experience as an adult. We spent our first evening at the bar in the Animal Kingdom lodge, which was a new thing for me. Not spending an evening at a bar - I've done that plenty of times - but spending an evening at a bar in Disney World. That was new.

We saw Off Kilter play in Canada at World Showcase, and I think Mike bought one of their albums. We stopped to see Matsuriza play in Japan, spent afternoons idly wandering through the shops, and had a great time.

One of the things about being a sibling is that you can communicate on many levels. We didn't need to talk in order to communicate, although we did plenty of talking. Our second day, we had dinner at Rose & Crown, and I learned about the way bangers & mash was served at the pub Mike went to with the Centennial Pipe Band on his Scotland trip - with the sausage "sticking up in a rather suggestive way" from the mashed potatoes.

We had an awesome dinner at House of Blues, with the best soundtrack I could have imagined - for whatever reason, they had an 80s new wave marathon going on, and we were reliving our childhood and talking about the albums we bought and the concerts we attended.

It was a great trip, and I'm glad I got to share it with my brother.

I wish I could have one more.

Saturday, August 25, 2012

Dark companion

There's a song by Tuxedomoon called "Dark Companion" which Michael and I played on our radio show at Macalester back in the 80s. It's a dark, jangly kind of a song, which suits my mood rather well. Here's a link, if you care to check it out.

I thought of it not long ago, as I was musing about the specter of grief that I carry around with me. It's odd, but sometimes grief is elusive.

I know it's there - it sneaks up on me when I am driving, or walking, or doing any of a thousand ordinary things. I have that moment when I realize that my brother is gone, and I feel the tears welling up. Sometimes - when I am driving, most often - I put it aside, because I don't have time for it. Other times, I try to let it come to me, so that I can come to terms with it, and I find that it... slips away.

It's like this dark companion, hanging around at the edge of my perception. Some of the color of the world goes away, and some of the warmth. There's a hole in my world.

I miss my brother.

Sunday, July 29, 2012

Baseball

My apologies for the long silence. I've been busy over at my own blog rather than Michael's, mostly blogging about baseball.

But as I finished up, I thought of Michael. He made it to one of Alex's games last year, but wasn't well enough this year to come. I told him about the games, and he read my updates.

I don't think he got baseball in the same way that I do - he liked it, certainly, and he and Jen enjoyed going to Twins games. But to the best of my knowledge, he never scored a game.

I thought of one of the last text messages I got from him. I'd seen him at the hospital earlier in the day, and then left to get Alex to the game. I was on the field coaching, so Christina had my phone and was sending him updates. She got kind of excited about the game - it was our 4th game of the year, against the only other undefeated team, our long-time rivals the Maplewood Express (seriously, I'm not making this up, you can read about it on my blog if you have the time) and missed his reply to one of her updates.

His message was "Are the Ironpigs still ahead?"

They were; we won that game and all but one of the rest, on the way to finishing in first place.

I told him about the game the next day in the hospital, but he was drifting in and out from the painkillers.

This was a painful, painful summer. I lost a brother who was my friend, and I had to watch him die and know there was nothing I could do about it.

Baseball helped me through that; coaching Alex and his teammates in a magical season was good for my soul.

Baseball season is over. We made it to the championship game and fought it down to the wire, but lost. We went down fighting, though - we had the tying run at the plate when the final out was made.

The Ironpigs are still ahead, bro. They're still ahead.

I miss you.

Monday, July 09, 2012

A mighty fine wake

We spent the weekend remembering Michael's music.

He's been in many bands over the years, but two really stand out.

The first is Gallowglass Irish Trio, the band that made him a musician. Gallowglass shows are half concert, half comedy routine. As Ken Larson says, "We're Gallowglass Irish Trio, and if you came in late, we are musicians." This was the band that started it all, and watching him play with Ken and Lojo Russo was always a delight.

The second is The Long Straight Forever, the band he founded with Raymond Yates and Matt Ogden. This is the band that featured Michael in full command of his abilities as a musician, writing songs, singing and playing his heart out. This is the band that featured Michael at the peak of his career.

I love both of these bands, and I am so glad I got to hear Michael play in them.

This past weekend, both bands were scheduled to play at CONvergence, a science fiction convention here in the Twin Cities. With Michael's passing, both were faced with the impossible task of playing without him.

It would have been easy, in some ways, for Ray and Matt and Ken and Lojo to say "we can't do this without Michael." They could have cancelled the shows, and I think everyone would have understood. These are people that were my brother's friends, people who called him "brother" and meant it. Playing a show without him, playing his music without him there, was painful. But it was beautiful.

Ray and Matt played on Friday night, with Ken and Lojo and Scott Keever and Gabriel Hilmar sitting in for Michael. They played his songs, and they played for him and to remember him. It was sad and beautiful and I am forever grateful to them for that show. At the end of the show, Lojo said, with tears streaming down her face "No ballads on Sunday!"

Ken and Lojo played on Sunday afternoon, with Ray standing in for Michael, along with Adam Stemple and Scott Keever. As Lojo said, "it takes three guitarists to fill Michael's shoes." They did a fine job of it, especially Ray, who was goofing around as Michael would have, cracking up Ken and Lojo. He said he could feel Michael's spirit in him, and I could see it.

Lojo proved herself a liar, singing a ballad she wrote for Michael, a beautiful song called simply "Brother" that put the feelings of everyone there into words. It was a show that combined grief and joy in equal measure, and a fitting last show for Gallowglass.

Sunday night, we had a wake for Michael. He didn't want a funeral, he wanted a proper Irish wake. Minus the Catholic priest. He wanted a wake at Kieran's, with drinking and laughter and tears. He got that. Many of his (and my) old friends were there, raising our glasses to "absent friends." And many of the same musicians that had played over the weekend were there, along with others that had played with him over the years.

Lojo played her song again, breaking my heart a second time. Ken played "Could I Face Tomorrow" which is the first love song Michael wrote. I cried the first time I heard it, listening to him play it alone on the end of a dock, playing to the setting sun and singing about love slipping away. I have cried every time I heard it, and last night was no exception. John Sjogren, an old friend and a fellow cancer warrior, led the singing of Finnegan's Wake, as much for me as for Michael. And there were many more songs, laughter and tears, and many toasts. 


Jen remarked to me, as the evening was winding down, that this was what we - she and I and Mom - had needed. Not the memorial - that was about giving the rest of the world a place to show their respects, and it was good - but this wake, this gathering of friends and singing of songs. This was what Michael wanted, and he was right.

It was a mighty fine wake.

Thursday, July 05, 2012

On the durability of digital media

Mom, Jen and I have spent a lot of time going through Michael's things, sifting through a lifetime of memories. It's part of the process of grieving, and of finding the things that help us remember the man we have lost.

I've been looking through the files on his computer, trying to make sense of everything. In the last couple of months, he and I made sure that I had access to all of his digital life - he gave me his password for his computer, and we set up a master password locker for all of his various accounts, so I could take care of his bills for him while he was in the hospital.

But we didn't talk about his backups, and I wish we had. Like me, he was a computer guy - for most of his career, he worked on computers, and he always had a computer at home. Over the course of a lifetime, you accumulate a bunch of backups of various sorts - when you leave a job, you often take files with you, and when you switch computers, you may not take all of your files forward.

But as it happens, digital media is less durable than one might imagine. In going through Michael's stuff, I've found a bunch of CD-Rs that are unusable - fortunately, I think they are just work files from his Gambro days - and a hard drive that won't read. I think it was a backup drive, and his computer's hard drive is fine (and backed up to a new drive AND a cloud backup), so I don't think we lost anything.

But I wonder where his backups are. Back in (I think) 1996 or so, he created an album cover for the 5th Gallowglass album. He called it Wake in the Morning, and the only known version of it is this t-shirt that Lojo still has.


I'd love to find the original file.

Today's lesson: talk about your backups with your backup.

Wednesday, July 04, 2012

Instrument stories - the Bambu electric

Michael was many things in his life - teacher, art director, writer, pilot, biker, and more - but ever since he first picked up a guitar at the age of sixteen or seventeen, he was a musician.

The first guitar he ever loved was an electric. This probably surprises some of you, who know him as a folk musician with a fondness for acoustic instruments. We grew up listening to The Clancy Brothers and Tommy Makem at Dad's house, along with Dad playing guitar and singing (Finnegan's Wake in particular is the song I most strongly associate with memories of Dad playing the guitar). At Mom's house, we listened to the Beatles and the occasional Fleetwood Mac album. In the late 1970s, we discovered punk and new wave music, and especially Devo.

I think that's what inspired Michael, and he decided he wanted to play guitar as well, and bought an electric guitar from the Podium in Dinkytown. It was a Bambu, an odd but well-made and beautiful instrument with a bamboo neck.

I found a link to a similar guitar: http://www.a6string.net/MI/bambu.html. I found that link on this page - http://forum.frugalguitarist.com/yaf_postst1587_missed-opportunities--the-Bambu.aspx - where the poster talks about playing such an instrument at the Podium in about 1979/80/. Chances are fairly good that the guitar in question is the one Michael bought.

Since he couldn't read music, but wanted to learn a song, after first couple of lessons, he left a tape with the instructor so that the instructor could figure out the song and teach it to him. The tape was Devo's Are We Not Men, and the song he wanted to learn was Mongoloid. The instructor put the tape in on the wrong side, though, and learned Come Back Jonee instead.

He never used the Bambu much, but he kept it over the years, and he never bought another electric guitar. He went on to become known for his acoustic prowess, and the instrument most people think of as the iconic Michael Matheny instrument is probably his Hoffman guitar, or his mandola. But for me, it's the Bambu, the guitar he used to play Devo.

His wish was that it go to his bandmate Matt Ogden. A few things worth knowing about Matt. Michael more than once described Matt as "so good he doesn't know how good he is," and told me that he lived in fear of the day that Matt figured out how talented he was and moved on to something better than The Long Straight Forever. One of Michael's favorite things to do in a TLSF concert was to just point at Matt and let him riff. When Michael and Matt first talked about playing together, Matt said that he knew nothing about Irish music or folk, and Michael said "that's perfect." He wanted a bandmate with no preconceived notions about what playing Irish music or folk-rock meant, and in Matt he found a soulmate and a brother-of-the-heart.

I want to hear Matt play the Devo that Michael loved so well on the guitar he carried for those many years, the first guitar he ever loved.

- Kevin

Tuesday, June 26, 2012

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.

Sunday, June 24, 2012

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

Thursday, June 14, 2012

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.

Tuesday, June 12, 2012

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.  
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

Monday, June 11, 2012

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]

Saturday, June 09, 2012

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

Friday, June 08, 2012

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.

Wednesday, June 06, 2012

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

Tuesday, June 05, 2012

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

Sunday, June 03, 2012

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

Friday, May 25, 2012

Home again.

Kevin here.

Michael is home today, and we're hoping for an uneventful weekend. If you have the desire to stop by and wish him well, call first - he has a lot of sleep to catch up on.

More appointments in a week to check on things like kidney function, and sometime soon he'll get a PET/CT to assess progress of the cancer, but for now, we're just enjoying little things like a real bed and real food.

- Kevin

Wednesday, May 23, 2012

Scanners on full

Kevin here.

Sorry for the intermittent updates. I don't write them at the hospital, preferring to spend my time with Mike when I'm there.

As of Wednesday afternoon, what we know:

Michael is still in the hospital. For those keeping score at home, this marks the 23rd consecutive day of being in a hospital, although there was a brief break last Thursday, where he got to be checked out and spend part of the night at home. Only to come back in on Friday morning to get checked in again.

Which sucks. In a really huge way. I'm not sure I understand how much it sucks to be in that place, where your own body is trying to kill you, and parts of you are failing. Mike described this in a text message last week, during the first leg of this stay:
...it feels like I'm made of duct tape and cardboard, and they're just trying to patch me up while another bit starts to fail. 
 So, why is he still in the hospital?

Several reasons. Fair warning: medical details follow. 

He has two infections, or perhaps the same infection in two places. He has an E Coli infection in both urine and blood, indicating that it's fairly serious. The blood part is minor, as these things go - the doctor we talked to today talked about a spectrum of various degrees of blood infection, with some serious shit at the top end. Mike's near the bottom, but this is still something they take seriously, with IV antibiotics for multiple days. He'll also likely have oral antibiotics for multiple days after the IV.

He's also having a lot of trouble breathing, and thus far the doctors aren't seeing something that explains the breathing troubles he's having, so the first of his two scans today was a CAT scan aimed at trying to get an image of his lungs. When we get that, we may know more about the amount of tumor growth, but the real data is on the other side of a PET/CT scan, which the doctors haven't ordered thus far. Being on oxygen all the time sucks for a variety of reasons, but it's better than suffocating.

The second scan was done in Nuclear Medicine, and was a scan aimed at his right kidney, to make sure that the double-j stent they put in almost two weeks ago is still working, because he's not urinating. At all. His "perc neph" which is the drain they installed in his left kidney, also about two weeks ago, is working just fine, and he's pretty much blood-free, which is a very nice change. But still, that's a problem.

He's also retaining a lot of fluid in his legs - a condition called edema - which again, is moderately confusing to the doctors, since there is not currently any clotting going on that would explain the retention of water.

And he's not up and walking, since all of this is going on, and his back still hurts like hell from the degenerative disc condition, and so on.

We're aiming at Friday, because that's when the IV antibiotics will have run their course. Things may change between now and Friday, of course, but from what we know now, it's a good target.

- Kevin


Sunday, May 20, 2012

Blood work

Kevin again.

We now know the reason for the shakes Michael was having Friday morning: he has an E. Coli infection in his blood. According to the infectious disease doc, this is not surprising given the number of surgeries he had. They actually had pretty much figured this out on Saturday, but at that point all they were sure of was that there was a "gram-negative rod bacillus" in his blood. Bacteria take longer to show up in bloodwork, since you have to culture them -- as the doc said "they have to grow before you can figure out what they are."

We also know that these bacteria are resistant to the antibiotic they gave Michael on Saturday. Boo! But it turns out that the antibiotic they gave him on Friday is the right one. Yay!

The course of action is 7 days of treatment with Rocephin (the new antibiotic), which has to be administered intravenously. Fortunately, that does not mean Michael has to stay in the hospital for 7 days - he can do IV drugs at home, probably with the help of a home health aide. We still don't have an ETA for his release, but we're hoping that tomorrow will bring a consultation with the hospitalist and a plan for getting home.

He's looking good, although still very fatigued and in a lot of pain from his lower back, which is aggravated by lying in a hospital bed. Putting on a pair of sweatpants is enough effort that it leaves him trying to catch his breath, which is worrying.

Once he does get home, he needs to get back in for a PET/CT scan to assess progress of the cancer; that apparently can't be done as part of his hospital stay but needs to be done outpatient after he's released. American healthcare is wonderful, but our insurance system is pretty screwed up.

- Kevin

Saturday, May 19, 2012

One step forward, two steps back

Kevin again. 

As it turns out, Michael spent less than a day at home. We got him home Thursday afternoon, and he and Jen settled in for a restful evening of mac & cheese and TV watching. He was running a fever, but that's not unusual for someone who's had four surgeries in the past two weeks and whose immune response has been knocked down by chemotherapy and kidney issues. Jen called in, and they removed the cap on his perc neph. 

The real problem started about 3am Friday morning, when Michael woke up with problems breathing. He asked Jen to turn up the flow rate on his oxygen, but could not catch his breath, even with the maximum 5 liters/minute that his home unit can deliver. So off to the ER they went, to spend a couple of hours being monitored. Tests showed an elevated white blood cell count, consistent with the mild infection issues noted above, which confirms that suspicion. 

After a couple of hours, things cleared up,  and Michael felt okay again, so they went back home... and about 11am, it happened again, after Michael took a nap. So, back to the ER, where he spent the afternoon, before being checked in for observation. So he's back at Abbott, on the oncology observation ward. We're hoping it's just for the weekend, and that we can figure out what's up. 

We don't know what's wrong.  I guess in a general sense, we do -- he has cancer -- but what's triggering these specific episodes is a mystery. Mom thinks he's having an allergic reaction to his dog, Jen thinks it might be related to the fact that he was actually sleeping on his back and the fluid in his lungs may be pooling differently (in 16 days of hospital time, aside from never getting a full night's sleep, he also had never laid fully flat, due to the nature of the hospital bed. I have no theories, but I think Jen's sounds good. And I think it's worth getting a good air filter and doing a deep cleaning on his house to get rid of pet hair and the like, because even if he's not having an allergic reaction, having lots of particulate matter in the air is bad for people with breathing issues. 

Have I mentioned that Jen is the most amazing person I think I've ever met? I am so very glad that Michael and she found one another - true love is a rare and precious thing. 

- Kevin

Thursday, May 17, 2012

Home.

Kevin again.

Mike is home. After sixteen days at Abbott, HOME.

We were very glad to say goodbye to the nurses in the Critical Observation Oncology ward, but not because they weren't awesome - they were great. It's just that the hospital isn't someplace you choose to be unless you work there.

Oxygen is down to 2L/minute, and he has a prescription for the portable concentrator, which should give him much greater mobility than carrying tanks. We may test that out tomorrow.

Blood counts are nearly normal, and he's almost entirely free of tubes - one remaining from the "perc neph" but that's supposed to come out Wednesday. He's tired, and he still can't walk very far, but he's up and walking, and home.

If you're feeling the urge to stop by and say hello, give a call first. I think he's got some sleep to catch up on. In a real bed. At home.

- Kevin

Saturday, May 12, 2012

Transfusion redux

Kevin again.

Mike did not go home today. He got two transfusions instead, one set of platelets to help with clotting and another unit of whole blood. If you can give blood, please do so - you'll be helping someone who really needs it. The problem currently is that he's still bleeding in his kidneys from the surgeries, and the doctors want to see that stop before they remove the "perc neph" - the percutaneous nephrostomy from the second surgery.

He needs to have 24 hours of mostly clear (or at least mostly blood-free) fluids in the perc neph before they remove it. Which means he's at least a day away from going home, or was as of earlier tonight.

In happier news, we've been dialing back his oxygen, trying to get him down to below 3 liters/minute so he could switch to the portable concentrator. That seems to be going well. We've also asked the nursing staff to get him tested for switching to pulse delivery of oxygen, which would be better in a couple of ways: first, because the portable concentrator can deliver pulses at higher volume than it can a steady flow, and second, because he wouldn't have the steady flow of air drying out his nasal passages.

I have the feeling I wrote that before. Oh well, it's important enough it's worth saying twice if I did.

- Kevin




Friday, May 11, 2012

One malt, one walk, one chair

(Title adapted from "One Bourbon, One Scotch, One Beer" by George Thorogood)

Kevin here, catching up on the last couple of days...

Thursday

Mom and I got Mike a vanilla malt, size small - the "Junior" according to the register at Andy's Garage in Midtown Global Market - for lunch Thursday.

He hadn't eaten much of anything on Wednesday - his mouth is sore from the chemo and possibly some of the other drugs, and the oxygen blasting into his nose has dried out his nasal passages and throat, despite the bubbling tank of distilled water it's blasting through. He was also nauseated from the various drugs, which didn't help much.

Mom and I took a walk to Midtown Global Market (henceforth MGM) to have lunch while he napped. It's about a half-mile from Abbott, but there is a skyway that connects the two, so we had an easy walk over across the Greenway. We chose Andy's Garage for lunch, because of the malts. Mike had wanted ice cream the night before, which I failed to deliver for Movie Night. In my defense, I did manage to find buttered noodles.

When we got back with the malt, Mike was awake and sitting up. He managed to eat the whole thing over the span of about 20 minutes, which was very good. We had a good talk before I headed off to watch Alex's baseball game, in which I reminded him that he needs to get out of bed before he can go home. Mom called later to let me know that he did get in a walk and spent about an hour in the chair instead of the bed.

Friday
I just got in a short visit on Friday after work, before he started drooping about 8pm. Ray & I walked over to MGM to pick up food again. I got a malt this time. :)

We picked Mike up some refritos and rice - easy foods to eat, not too spicy, but not bland.

He's off the catheter, and was off the IV as well. Oxygen was down to 3.5, heading to the below-3-liters-per-minute level that would allow him to use a portable system instead of a stationary oxygen concentrator. This would be a good thing.

When I got there, he was up and sitting in the chair, and Jen said he'd been walking around when she got there. He got in another walk today, using the walker but not relying on it.

Saturday release is possible. Here's hoping.

- Kevin

Tuesday, May 08, 2012

Walkies

Kevin again.

Major milestone today was getting in the first walk since the first surgery (for those keeping score at home, we are at two surgeries in this hospital stay of a currently-planned three). The Physical Therapist was an elegant and wiry woman who boasted proudly that she had not had a patient with an exposed backside in more than 20 years. I pointed out that this was quite a streak of not streaking.

Mike's color is much improved, his energy is up, and I'm no longer wondering if he's ever going to get to go home. Which is a good thing. He's down to 4 liters of oxygen per minute, from 6 yesterday (and most of today). The PT prescribed a second walk today, and at least three tomorrow. The idea is to get him on the road to mobility, so when he goes home he's not helpless. I like this line of thinking.

As of today, the plan is for surgery number three on Thursday (I'm guessing early because most of his surgeries have been early - I think hospitals tend to schedule the morning and use the afternoon as buffer to deal with emergencies, but what do I know, I'm no medical professional).

Earliest possible release day is Friday, with Saturday looking more likely to me. Again, not a medical professional.

- Kevin

Thursday, May 03, 2012

Out of surgery already

Kevin here again.

Mike had dialysis yesterday - apparently the wide variety of things he's been subjected to have been hard enough on his kidneys that they basically shut down, which is why he's in the hospital. The process for dealing with this is to hook him up to a machine that can filter the crap out of his blood for him, since his kidneys are not living up to their part of the bargain.

Stupid kidneys.

He went into surgery this morning and it finished quickly, which is a probably a Very Good Sign. The purpose of the surgery was to put stents into his kidneys to allow them to function better. He'd been told there were two options - the easy way would be going in through the urethra, but if there was blockage from the cancer in the abdomen, the surgeon might need to get to the kidneys from the back. Which would be a bigger deal.

Jen texted me at 8:20 to tell me Mike was going into surgery, and called at 8:40 to tell me he was out. Sounds like the fast option worked.

Still unknown: recovery time from the surgery, time to get back to normal creatinine levels, time to get back to normal kidney function, effect of all this on various medications, whether this affects the chemotherapy... so much we don't know. But for now, he's out of surgery, which is better than being in it.

- Kevin

Wednesday, May 02, 2012

Once more into the hospital, dear friends.

Kevin here.

Mike is in the hospital again. He went in under his own power yesterday. His oncologist called Tuesday afternoon, after reviewing some of the bloodwork from the infusion session on Monday, with concerns on high levels of creatinine. This indicates some kind of kidney problem -- as Mike says, "one of the few organs not already involved with the cancer" -- and is worth looking into.

So, to the hospital, for some additional scans of the kidney, and as long as he's there, how about some scans of the chest and an EKG. Waiting for the results and monitoring him means he is (was) there overnight at least. Which is good, because he's really short of breath, and bad, because hospitals are not restful places to be.

I got there about 8pm, as he was off for scans, accompanied by Mom. He eventually made it back to the room, and then Jen showed up and we had a little hangout party until about 11pm when Mike's eyes were starting to droop, and then we sent Jen and Mom home. I stuck around for a while. He was tired but not asleep, and we were waiting for the middle-of-the-night scans recommended by the hospitalist, so I figured some company wouldn't hurt.

Hospitalist is an interesting word. Wikipedia tells me that it dates back to 1996, and is used to describe doctors whose professional focus is on a location of care (hospitals) rather than an organ (podiatrists), a disease (oncologists) or the patient's age (pediatricians). Man, healthcare is complicated.

The hospitalist in question was very nice. She'd clearly read through Mike's charts and background information, and followed up on the specifics of why he was in and the chest pain he had reported to the staff while he was being transported to and from radiology. After some thought (and some medical poking and prodding) she offered a preliminary diagnosis of musculoskeletal pain, caused by his heart working overtime to get oxygen to his body with his low hemoglobin counts. The other options, for those keeping score at home, are heart attack (not likely because of the location and symptoms) or pulmonary embolism (not likely because of the symptoms and the sound of his lungs).

The night nurse, Rosalinda, is really nice. I sometimes wonder why people chose nursing as a profession, but it's clear that she chose it because it means she gets to take care of people. She was even doing it to me. I was fine up until that point, but I started crying after they took him off for scans about 12:30 am and she told me I could listen to him (and go home) or stay if I wanted.

More when we know more.

- Kevin

Thursday, April 26, 2012

"Pass the Crimson to me, Jimson"

Those of my generation (or older) might remember the Nervous Norvus "hit", "Transfusion", which I recall having on perhaps a well-worn 45 as a kid, though it may have actually been on an LP collection called "Goofy Greats" that sounds vaguely familiar to me. My  brother may remember more clearly what we had. 

Anyhow, there is a point to all this reminiscing. I'm currently at Abbott Northwestern awaiting a red blood cell
Transfusion. Well, two transfusions, technically. Or one transfusion of two units. 

The reason for all of this is that my hemoglobin (part of red blood cells that function as oxygen transport) has been steadily falling since my chemo treatment with the new drug, Alimta, a couple of weeks ago.

My low Hgb could be a large factor in my shortness of breath over the past few weeks. Even with the supplemental portable oxygen, I'm still functioning as if I live at about 12,000 feet. I did for a number of years live at about 9,000 feet up, and had much, much more energy than I do now. 

Supposedly, the positive effects Of the infusion (more O2, more energy) will be felt just about right away, and may last for a few weeks, potentially. But now we know that in my body the chemo and the Hgb fight against each other. I'm scheduled for chemo next week, and the hope is -- with this transfusion -- that I'll be strong enough to go through with chemo as planned. It also means that I might be able to leave the house and maybe play a few songs at a house concert in a week or two. I'm hopeful that I can reclaim some "normal"-ness, at least for awhile.

Living with this shortness of air is at best annoying, and at worst hugely anxiety-producing for me. The tubing (when home) and the shoulder tank (when going out) are cumbersome and make me very self-conscious. Even the exertion of climbing the 4 steps up from the back door after letting the dog out or in are sometimes too much for me and afterward I collapse on the couch, gasping for air and trying to remember to breathe deeply and slowly. Meanwhile my heart is racing, partly from anxiety that I'll stop breathing, and also because my heart is trying like mad to push the blood around to make up for the oxygen deficiency. 

So I'm looking forward to the end result of the transfusion. The process isn't much different from my chemo infusions, except that the transfusion takes longer, and the blood is refrigerated so I'll be very chilly all day.

Oh, and, while I'm on the general subject: donate blood. It's the right thing to do, and they give you cookies. If you're eligible to donate blood platelets, you could literally be a lifesaver. Platelets are in the shortest supply, nationally, as they only have a shelf life of 7 days. Some cancer patients need blood platelet infusions a few times a week, even. There are some donors who will donate for a dedicated patient (in order into make it easier on their immune systems) and these relationships could go on for years. To be clear, right now I don't need platelets, just red cells. But there are many out there who desperately need your blood. The blood donation center will figure out what blood product you're the best candidate for donating and -- assuming your blood is clean, which they'll test for up front -- they'll take it over and over again. They don't pay for blood (like they sometimes do with plasma) so it truly is a donation. But it makes you feel really good. And not just because you're light-headed from the brief drop in blood volume.

I have donated blood many times in my life, and I feel better about being a blood recipient today knowing that I have also given. 

Want to help? Not sure what to do? Donate blood!

Friday, April 20, 2012

Pneumonia, the Sequel.

So, with a progressively worsening cough, I went to see Dr. Larry (my primary care practitioner) yesterday afternoon. He ordered a chest x-ray, and just called a few minutes ago with the positive results.

He described it as "early pneumonia", but since it seems like its maybe the same old pneumonia as before, I think it's probably more like "the Return of Pneumonia". "Son of Pneumonia" makes it sound like some sort of revenge plot (which for all I know is the case. I get so little I formation about the wars going on inside my body). "Pneumonia, the Goopening" is another possibility that fits.

I have been prescribed, and am dutifully taking, an antibiotic. I started this last night and felt some slight relief already about 4 hours later.

I need to watch out for increased shortness of breath and continued fevers, etc. As with last time, a turn for the worse could mean some hospital time.

Right now I'm enjoying the possibility that this will all fade away and I'll start to get some energy back. I might even be able to get off the portable O2, if it goes well.

Tonight I'm looking forward to improved energy, and a great weekend with Jen.

Boo is worried, but I think she's getting to the "but what about me?" stage of all this, and it hitting up all the visitors for treats and walks, etc. It makes it harder that she refuses to sleep on the people bed, so we don't even get that time together. If I'm out a lot during the day, or napping, or she prefers her dog-beds to the shared people/dog couch (generally she does) then it feels like we don't get much time together at all.

Anyhow, that's the news.

Thursday, April 19, 2012

Doldrums

Or perhaps just the nadir. That's got to be what I'm feeling.

Tired, exhausted, out of breath, tired of coughing, not sleeping well enough, etc.

Here we are at chemo (Alimta) round 1 +11 days, I feel chemo-y, but different -- but there's likely a few things going on.

Last night I ran a fever -- it was 100.3, which is the magic number at which you're supposed to call the oncologist, day or night. We did. The other symptoms I was having weren't worrisome enough to warrant a trip to the ER, so I was instructed to take a Tylenol and check the temp again in an hour or so. It was then down, below 100, so that was good.

The back is slowly improving after the shots, but not as fast as id like, so that still a factor.

Today has been a slugfest. I have nothing concrete planned for a few hours, so I decided to get in some extra napping/snoozing as much as I could. It was only moderately successful. Boo is very patient, but she has already had breakfast and has been out a couple times, thanks to Jen.

I'm feeling extremely thankful for all the help I get, and more than a little frustrated by my current need for it. Using portable oxygen and occasionally taking advantage of wheelchair rides and ramps is just not who or where I thought I'd ever be.

Friday, April 13, 2012

Final word: no lung or leg clots!

I just heard from my oncologist, who relayed the radiologist's final findings: no blood clots or embolisms in legs or lungs. Good news!

Thursday, April 12, 2012

Embolism?

According to the verbal report from the radiologist, yesterday: no, I do not have any embolisms in my lungs as far as he could find. Another radiologist was doing the "official" read and I should have all results today, hopefully, including the leg ultrasound results.

And, so far, the o2 seems to be helping -- though it is a bit cumbersome.

Tuesday, April 10, 2012

Round 1 (formerly Round 5)

Today I had the first treatment of Alimta, the new chemo drug. Infusion on this one is really fast -- about 10 minutes for the drug itself, but there are a few other things they run before and after, so the whole process was about 2 hours. So far I feel just a bit nauseous.

The Lungs, and O2.

And there's another concern. Something else to worry me and many of those close to me. Hooray! Because of my shortness of breath and coughing situation, and my resting/active/recovering pulse/ox sats and heart rate, I need to be followed closely to make sure that I don't have a blood clot in my lungs, otherwise known as a pulmonary embolism. This should be a particularly scary term to my extended family, as my aunt (my mother's sister) recently died very unexpectedly of a pulmonary embolism following a bad coughing situation that just wouldn't go away and a feeling of starving for air, which I feel occasionally these days now. This means I get more scans tomorrow. This one will be a CT (*totally different from the PET/CT that I had last week...) as well as an ultrasound of my legs, where these things can start. This will (hopefully) rule out the existence of clots. I should have the results of this tomorrow or the next day at the outside, and will report.

It also means that I qualify for my own home oxygen tank(s), which will be delivered shortly. No, you will not see me shopping at Rainbow carting around an O2 tank. It will stay at home, as I am way too self conscious to venture out when using it. And its not an all-day thing, anyhow. Each tank only lasts about 4.5 hours. If I smoked, I'd be one of those people taking hits from the tank and then having a cigarette, until there was eventually a loud explosion. Luckily, I don't smoke.

Rounds, rounds.

Because I'm on a new drug, the numbering system for rounds has officially changed: the clock is now reset to round 1. They'll scan me again at mayo after 2 or 3 rounds, so in about 6 to 9 weeks. Lets hope that Alimta sucks less than Docetaxel for me... AND is easier to tolerate.

Otherwise, pretty standard post-chemo here: feeling tired and a little bit nauseated. Jen is making me some great delicious-sounding dinner concoction, partially based on Easter Ham leftovers. And special cancer-fighting dessert cookies. Yum! :)


Friday, April 06, 2012

Good News, Bad News

I had a 2-day trip down to Mayo this week and -- as always -- it was informative. I had a PET/CT scan, met with my Mayo medical oncologist, Dr. Abbott (who works in conjunction with my Minneapolis medical oncologist, Dr. Straightshooter (also known as Dr. Way Better At Communicating with Patients than My Last Local Oncologist. Hence the switch, and the name.) The scans and meeting were on Wednesday, and the following day I had an appointment with a interventional radiologist, who did more steroid "facet" injections in my lower back, to give me some more relief there.

This is going to be one of those "Good News, Bad News" blog entries. Since the good news is shorter than the bad, I'll start there. 

1) I was there with my mom and brother, and it's always nice to spend time with those two.

2) We stayed at one of the nicest hotels in Rochester, the Kahler Grand Hotel -- the same place (so I hear) where the VIPs and Oil Sheiks stay when in town. The beds in our large, non-vip rooms were okay, though I didn't sleep very well. It had been a busy day Wednesday and there was much to process, mentally. 

3) I had two decent meals at my favorite Rochester Mayo-area greasy-spoon Greek/American comfort food diner, Mac's. Its *not* worth a trip just to Roch to go to Mac's, and probably not even worth a trip across Roch if you're in town, but its very convenient to the Gonda building (where all of my appointments seem to be). It's strange, but tasty, to get gyro meat in an omelette or mixed with hash browns, if that's to your taste. They do breakfast and dinner.

This time we did *not* eat at the Canadian Honker, which is like a one-off Perkins. The Honker is convenient to Mayo St. Mary's hospital, where I had surgery in fall of 2010. (The hospital and the "clinics" which is usually what people mean when they say they're going to "Mayo") are a mile or so apart from each other. The Honker is also not really worth the trip, but they do have their own gourmet "pleasonings" (basically salt, spices and MSG) at every table, and also available for sale. I have a bottle here at home that I got as a gift. Sometimes -- though not very often -- food just needs Pleasonings to bring it home.

So anyhow, that's the good stuff. Good company, a fancy-ish hotel, and gyros.

The bad stuff.

Well, part of the bad stuff is not all bad, but I hope you'll forgive me lumping the related items together.

To review, I have had 3 rounds of chemo (9 weeks) on docetaxel (or Taxotere), treating once every 3 weeks (which I do locally in Minneapolis), thats 9 weeks since I've been to Mayo. This means it was time for another round of scans to see where the cancer is at.

When it comes to having radiologists read scans, Mayo is lightning-fast. It takes a pro to understand and accurately interpret exactly when they're seeing). Many hospitals need 24 hours or more. Mayo does their scan reading in-house, and it takes usually less than 4 hours, and sometimes as little as 2.

I had my scan in the morning, which was a PET/CT Nuclear Medicine scan. The PET/CT is really not too bad in the spectrum of being-stuffed-into-a-tube-for-half-an-hour-in-a-really-cold room scans. I took some Ati-van (loraze-pam) prescription anti-nausea/anti-anxiety beforehand and was only marginally considering jumping out and running away by about 15 minutes in. The PET/CT machine bore (opening) is bigger than a standard MRI, and whereas MRIs are hideously noisy, the PET/CT is almost completely silent. So claustrophobia is less of an issue, here. But if you thought the airport body scanners were invasive, the PET/CT has it beat, hands down. It shows a detailed image of everything (inside and out) from your eyes to your thighs. Albeit in a series of thin slices than make it look like you've been through an industrial-sized Hobart meat slicer. 

So anyhow, the scan process was mildly uncomfortable and confining, but not too bad. Then on to breakfast (I wasn't allowed to eat anything pre-scan past 4 am (and at 4 am I was sleeping). And then we meet with Dr. Abbott a few hours later.

I was beginning to suspect that the news wasn't good, since he didn't launch into the radiologist's report and/or pull up the scan images right away. In general, I've had poor experiences getting bad news at Mayo. Dr. Hunter seemed to leave it to one of his residents, who always ended up doing a hatchet job. This is all still better than the late (as in, not my doctor anymore), un-great, Dr. Ungawa. He simply left the path report that talked in technical language about Stage 2 Urothelial carcinoma on the desk when I was initially roomed to get the test results. I can only assume this was an error, but still it's a huge and inexcusable one.

But Dr. Abbott is a pro: no printed reports left lying around, here.

He asks how I've been feeling, I tell him very tired, and we talk about that. We also talk about my recent pneumonia. After a few minutes we *do* get to the scan and the report.

The news, as previously stated, is not all bad. The docetaxel that I've been on has had some positive effect. Some of the known metastases have shrunk, indicating a "partial response" in those areas. 

But the alarming and unexpected news is that, at the same time that some areas have decreased, there has been simultaneous "disease progression". And not just increase in size of known areas, but evidence of new metastases in new areas, including new kinds of metastases. There is a largish looking "met" in the right lung, near where the pneumonia was. There has been evidence of spread to the lungs for 6 months or more, but it is clear that it is growing there.

There is now also clear indication of spread to 3 new areas: the liver.  Past that, there is indication (still uncertain, for some reason) of metastases in the pancreas, and also now signs of cancer in the bones in two locations. Finally, there is something odd going on in the bladder (where all of this started) that is also unclear as to what it means or whether it is cancerous. There are no tumors or metastases there, but there is a "circumferential" (all the way around) thickening of the bladder wall. My local urologist looked inside the bladder recently and saw no tumors or anything obvious, but clearly that all needs to be checked out more.

To be clear, even though I now technically have lung cancer, liver cancer, pancreatic cancer and bone cancer, this is all still considered bladder cancer cells (urothelial carcinoma). The drugs used to treat everything are still bladder cancer drugs, even though this seems strange to me. Different cancers area treated in different ways, and some (like mine) are just plain more aggressive than others. 

Dr. Abbott reiterated that all of the therapies available to me are "palliative and not curative" meaning there is no cure for this.  I know that people have reached stage 4 metastatic cancer and managed to beat it into remission, but they are clear that this is not a realistic hope for me. Surgery is still not an option, likewise radiation (as they'd have to essentially irradiate me from head to toe. Transplants, as I understand it, are also not an option as my cancer-filled blood would likely just jump into the new organ, ruining that one as well. And transplant surgeries are serious and dangerous even when a person is in the best of health. Which usually they're not, if one needs a transplant.

ANother disquieting piece of news was Dr. Abbott's analysis that some of the tiredness I've been feeling was not all the chemo, or even the pneumonia, but the cancer itself, as my body fights it more and more. It seems I've reached that point where I'm feeling the cancer itself, not just the drugs. He made it clear that its all up to me -- I don't have to go through with treatment. I assured him (and my family present) that I am very interested in continuing treatment. There may be a time where the combination of the cancer and chemo means that I'll likely need to take a break from all therapies for an unspecified period of time.

I will be changing chemo drugs as of this coming Tuesday. The new chemo drug is called Alimta (brand name) or pemetrexed (generic). On the plus side, the infusion (the actual IV treatment) is a shorter duration than the last drug. On the downside, the drug saps vitamin B, and early tests found that it killed organs because of it. My final indignation on Wednesday (after hearing the depressing news about the growth of the cancer) was a big intramuscular shot of vitamin B-12. This, in addition to another prescription that I will be taking for the duration, boost my defenses against the Alimta.

To me, Alimta sounds like a n antidepressant specifically geared towards people who have lost limbs. I think I should name  drugs on a freelance basis.But cancer drugs are tough. I'd probably come up with stuff like "Whoknowsia", "Worthatryadine" or "Betterthannothinga"

Feelings, etc.

I haven't really talked about my feelings about all of this, but in a nutshell I'm annoyed, disappointed and more than a little scared by all of these implications. Having cancer in now 4 organs (lung, liver, pancreas and apparently still the bladder... which I guess is really 5 organs if you count each lung separately) as well as in the bones now, has scary longevity and quality of life implications and assumptions. I'll likely be blogging more about my emotions, etc. over the next little while.

Chemo will pick up next week again with the new drug. I'm now very curious (and quite anxious) about the side effects of this drug.






Thursday, March 22, 2012

Round 3 (this time for sure)

I began round 3 of chemo this past Monday. The pneumonia has lessened to the point where it's safe, apparently.

Not much otherwise to report other than I'm feeling generally chemo-y these days, as expected.

Wednesday, March 14, 2012

Unexpected Delays

I should have had chemo two days ago (on Monday), but there was an unexpected complication. Apparently, I have pneumonia.

Who knows where these things come from, but apparently my avoidance of sick people was not quite complete enough. It is odd, though, that I experienced very few outward signs other than shortness of breath. I went in to my general practitioner last week seeking a refill for my asthma inhaler, and (after an x-ray) confirmed a small amount of pneumonia in the right lung. It explains, potentially, why I have been so tired of late.

On Monday, the oncologist decided that it was better to push everything back a week and give me more chance to recover. This does have a ripple effect, though, as now the rest of my chemo schedule will be delayed by a week, and weeks that I thought I'd be feeling pretty good (at the end of the cycle) I'll now be feeling not-so-great. This affects planned trips, scheduled gigs, etc.

Right now I'm still incredibly tired, likely from a combination of the chemo and pneumonia.

Sunday, February 26, 2012

The pendulum swing

I'm still not yet out of the woods for this round, but I wanted to document some of my side effects and what I'm feeling.

WIth my last chemo drugs, carboplatin and gemcitabine, the drug=s effects hit earlier, but not quite as hard. I'm still figuring out the precise trajectory is with this new drug, docetaxel, but in general it hits me later, and harder.

Getting treated this week on a Tuesday, it seemed that the side effects came on in this order:

Nausea. This showed up Tuesday, during the chemo treatment itself and hasn't left yet. It seemed to be worst on Friday.

Tiredness. This showed up Wednesday and got progressively worse, seeming to peak at Friday. I took 3 naps during the day.

Lack of appetite. Appetite disappeared pretty much altogether immediately during the treatment (its oddly fascinating to watch it just slip away so quickly) but the oral steroid they have me taking the day before, day of and day after treatment (in addition to the IV steroid they give me at treatment) artificially gives me a bit of appetite. The crappy thing is, my stomach is mostly closed to food and nothing really sounds good... I just have this feeling like I want to be munching on stuff. That tastes metallic and horrible. It's a cruel joke.

Problems sleeping: This started Tuesday, the night of treatment, partially due to the chemo drugs, and partially due to the steroids. The steroids should work their way out of my system by about Thursday, but that's when the real aches and other issues crop up. So basically, for one reason or another, I don't really sleep at all without sleep aids like Ambien until about day 10.

4) Body aches and pains. These started on Wednesday, the day after treatment, and came to a cruel crescendo on Friday night. Everything hurt. My back, my long-ago broken left femur, my teeth, all of my joints, my wrists, my ankles, my guts. Everything that had once sustained any sort of trauma was screaming. I took a cocktail of 5mg oxy-co-done, tylenol and Ambien and eventually slipped into some kind of sleep, telling myself over and over that it was temporary, temporary, temporary. At about 4 am I woke up and realized that the aches had faded away -- like some fever passing. I'm still a little stiff and sore today, but nothing like Friday. The worst of it departed early Saturday morning. Thankfully.

My mouth tasting like an old leather belt. This really started in earnest on Saturday, but was of course brewing all week. On Tuesday, foods didn't have as much flavor, and everything tasted like it needed salt, as an example. I'm at that stage now (again) where everything tastes bitter and metallic, and even water tastes unpleasant. I've been good at dong a baking soda and salt mouth-rinse to change my oral PH balance to be more neutral (this helps avoid mouth sores, which I have not had, thankfully). Though this, itself, tastes horrible. Also, I have been downing the Ricola natural honey cough drops one after another. The menthol numbs the mouth a bit, and the cough drop puts some other flavor in my mouth than the usual flavor these days, which tastes like I'm eating a popsicle made of a chunk of old, poorly-cured cowhide.

Light headedness: This really started yesterday (Saturday) but feels worse today. As I approach that day 8-15 "nadir" point in my cycle where my blood cell counts are lowest, the light headedness will likely get worse. Its interesting that my cell counts being low doesn't necessarily have all that much to do with my energy. Or at least, the chemo drug fading out of my system has a bigger positive effect on my energy than the negative one felt by the low cell counts. During my nadir last round, I was feeling pretty good, though still lightheaded if I'd stand up too fast or take more than about 3 stairs without resting.

In all, I feel like I'm on the mend for this round, which is good. Near the end of the last round, my taste buds had returned nearly to normal, and I was feeling some appetite. The nausea faded to nearly 0 as well. Hopefully, the trend will continue and I'll feel normal-ish again in about a week.


Tuesday, February 21, 2012

Round 2

As I write this I'm at the chemo clinic getting a my second dose of docetaxel/taxotere.

It's too early for the ill effects to really start kicking in (I will likely feel the full force of it within about 12 hours). I am feling tired from the IV dexamethasone (steroid), an also IV Benadryl -- both to reduce nausea. The "dex" steroid will also keep me awake and give me some energy (enough so that I will have to take sleeping pills so tht I *can* sleep for the next few nights). I'm also taking more oral steroids (more dex) the day before, day of, and day after chemo. Lots of nausea prevention, and even still: this is and the most consistently nauseated that I've felt on any chemo.

In addition to all of the above, I took my own Ativan/lorazepam anti-nausea pill and a librium anti-anxiety pill before coming in.

So it makes sense that I feel a little tired right now.

I had a good weekend but was afraid that I may have overdone it, energy-wise. Twice in my last chemo series, my neutrophils (part of white blood and associated with immune function) were too low for me to safely get chemo, and they sent me away. Not today, though.

Jen and I shopped for and bought a new mattress Saturday (i had tge energy to visit 3 stores, which was impressive for me). Even after essentially closing down Palmer's bar in West Bank Minneapolis Sunday with friends from the touring Irish band Solas who were in town for the night, and then a busy day at home the following day getting ready for my dark week ahead, my cell counts we're normal (they always do a full blood panel very week). So that's a relief. I hate the side effects of this drug, but I want the (hopeful) benefit, so I was glad that I could proceed as planned today.

Yesterday's food and house preparations reminded me of preparing for a big snowed-in blizzard. These were common in the mountains when I lived there. Though slightly more common in the winter than the summer, just for the record.

Tonight I have the pleasure of Jen's company for likely a very bland dinner -- by my request, necessitated by the chemo. It's a testament to her well-established cooking ability that she can do that so well if need be.

The docetaxel has just finished and I'm just now starting to feel the first waves of nausea. And also the initially-entertaining but then soon afterward extremely annoying chemo hiccups, which last for a few days, sometimes affecting my sleep.

Here we go again.

Wish me luck, and hopefully I'll have another update in a week or so.

Thursday, February 16, 2012

My Own Personal Zenith

I was told that days 8-14 of my 21-day chemo cycle would be my "nadir", or lowest point, in terms of immune function. My blood test on Tuesday confirmed that my neutrophils were low (I had no idea what neutrophils were a year ago). They were not dangerously low, but were below human normal range, and low enough that I need to avoid sick people, watch out for fevers, etc. etc. Nothing really new there.

But what I do find fascinating about this new chemo drug is that it knocks me down so completely for about 8 days, and then I begin to recover steadily, to the point where I feel very close to normal. Compared to the last drug combo of carboplatin and gemzar, on the new drug (docetaxel) I feel worse than before at the beginning of the round, and better than before at the end of the 3-week round. Currently I have no nausea, a decent appetite, am sleeping pretty well (even without sleep aids) my mood is good and my energy, while still low, is enough that I can take care of things like walking the dog around the block, driving, doing dishes and laundry, etc.

If the opposite of nadir is zenith, then I believe I am reaching my energy zenith. The horrible metallic bitter taste has faded almost completely, water tastes normal again, and my mouth doesn't feel burned. 

This is a pretty big range to experience over a 3-week period, but it gives me continued hope that this chemo will be manageable. When the chemo nurse said, "I think you'll really like this chemo," (and she really did) perhaps she meant the last 2 weeks of it. I don't know.

I'm nervous about the next treatment, mostly becuase I know I'll feel terrible afterward, but at least at thius point I now what *kind* of terrible I'll feel, and for about how long. Knowing that it's temporary makes a world of difference for me, psychologically.

Acupuncture, my secret weapon

To a large degree, I credit my post-chemo recovery to my acupuncturist, with whom I've been working for nearly 2 years now, seeing her once a week, every week. She's good enough that she deserves a plug: Christine Gendreau, at River Island Acupuncture in St. Paul. I experienced a night-and-day change from day 8 to day 9, largely because I had acupuncture on day 8. Some think acupuncture is "out there", woo-woo, psychosomatic healing, and with some acupuncturists I think it can be. Everyone has branches of medicine that they think are bunk. I have talked to people who said "yeah, I tried acupuncture once..." its subtle yet powerful medicine. The needles (and I don't like needles) are so fine that they are generally sensation-less going in. I find that it takes a few treatments for the acupuncturist to get to know you and to figure out what your body needs. Christine, by this point, knows me very well and has the ability to succeed where a drawer full of pills failed. Example: digestive troubles, brought on by the opiates, resolved within 45 minutes, drug-free. My mood, terrible and dark one day -- sunny and upbeat the next, following treatment. Again: drug-free. Acupuncture can address nausea, appetite, etc. with great success. My back also experienced about 60% relief immediately using acupuncture. When my neutrophils were low, a treatment helped to bring them back up to a reasonable level within a few days. Just a few examples. And acupuncture is covered by many insurance plans, these days. I know that Christine takes HealthPartners and possibly more.

Sadly, my insurance (Medica) doesn't cover any acupuncture as far as I can tell. I pay 100% out of pocket. And even so, I go every week.

Check it out, but do yourself a favor and go 3 or 4 times. You'll notice a difference, I guarantee.

I recommend acupuncture strongly to anyone going through chemo. It can mitigate the side effects to a very large degree, and I consider it to be one of the absolute, most powerful tools in my post-chemo toolbox.

There are diferences in Acupuncturists and certification thereof. Some doctors and chiropractors offer acupuncture (usually limited to pain relief) but many go through a fast-track, abbreviated program that can be as little as 200 hours. Most dedicated acupuncturists (most are NCCAOM accredited, in my experience) go through an arduous, 2,000 hour (or more) program that takes many years to complete.

Some veterinarians offer acupuncture as well, which I jokingly refer to as dogupuncture. Watching acupuncture being used on my dogs was actually the turning point for me in believing that it is not psychosomatic. A dog doesn't have any reason to believe that this needle being put in its back should help him to calm down and have less separation anxiety, but when it clearly works -- you know there's something real going on, there.

And, while I'm on the subject: thanks so much to the anonymous donors who have bought me some treatments along the way. It is very touching and very helpful. Thank you. Sincerely.

Dr. Owen Wilson

I met with a new local urologist today as a followup to all the recent ER/hospital drama, and to find out what has been causing all the issues. Perhaps because it was caused by Mayo, they have been unhelpful in working with me to diagnose the problem. But maybe its just because its a mundane complaint in their world, and not very interesting. Regardless, its a good idea to have a local urologist for me, and doubly so since I'm getting frustrated with Dr. Hunter (the Mayo urologist) recently. He's a great surgeon, but I think he's dropped the ball a few times for me, recently, and may actually be to blame for not catching the spread of the cancer (becuase he hadn't ordered scans that would catch it) before it metastasized. That last bit, if true, could be a megabuck malpractice suit. Maybe that's why he's distancing himself from me. It certainly seems that way.

The new doc is a year older than me, and we know some of the same people from my high school, etc. Tall and blond, he looks more like a retired surfer than a doctor. He reminded me a little of Owen Wilson so I thought the name was appropriate. He's communicative, friendly and knowledgeable, and doesn't seem to have that "me doctor; you patient!" barrier than some docs can have. The scoping procedures were as pain-free as they have ever been, which I appreciated. I also like his staff, which is a big plus. Jen liked him as well. I plan to continue with him as my local urologist, and will see Dr. Hunter at Mayo only as needed, now.

His guess is that the trouble could have been (as I suspected) some damage to the prostate during the bungled catheterization at Mayo a few weeks back. Dr. Own Wilson says that the prostate is healing nicely, though.

With any luck, I won't have to go to the ER again anytime soon.