[This isn’t my usual blog fare. But I needed to get this off my chest. And if no one reads it that’s fine. I still put it out there. Facebook was another consideration but I honestly cannot take the day-to-day noise that is there right now. So here it is.]
Author: franla1917
Intervention cancelled
My Cardiac Intervention was cancelled. So no surgery tomorrow.
I was told that the insurance company balked at the procedure. This is a definite set-back but also one that is beyond my control. I’m trying to accept it and move on to the next thing.
Once the TAVR was offered and I accepted, joy ensued. Perhaps it was a little too easy, bump, bump, buuuuummmmp. This offsets that a bit.
The next steps are a bit unclear. I’m told that the doctors will appeal and that I should appeal too. I was told that this will not be resolved for 30 days so that’s what I know.
My mental state is disappointment but more just utter confusion. Not sure what to do, what to focus on. It’s a bit like mental motion sickness.
I don’t want to go off in Premera. Yet. And I don’t know what the whole story is because I was told they approved it earlier. I was told by some other medical profession that they have seen this before where one person verbally approves it but then later, when confronted with the paperwork, the company balks.
I thought being in a study would make this irrelevant but the rules change all the time. I was also told that the procedure was recently approved for my specific situation, which should make it more of a no-brainer.
This too shall pass. And at some point they will either do the TAVR or tell me what else to do. In which case I will reluctantly accept it. Right now, the good news is that apart from the echocardiogram, I am unsymptomatic. Perhaps I will develop some good ones in the time until the surgery. To paraphrase Carl the groundskeeper, at least I got that to look forward to, which is nice.
Final pre-surgery meetings
Thursday this past week were my final tests and meetings before surgery. I didn’t know what to expect and I’m not sure what to make of that fact. Usually the UW Med Center is very prompt and organized about sending phone messages before appointments. And, because heart surgery is a big deal, they send snail mail too. So I received on message on my phone and had two meetings. Wednesday night I told Amy this and she said I should have called.
Everyone is nervous. Everyone I talk to show and expresses this concern in different ways. I know people care or they wouldn’t get so emotional about it. I have, over the course of my life, learned to take this all in. But it took a bit of time before I could see this as fear and concern and at the end of the day, simply love and humanity.
But I’m a child of the late sixties and early seventies. Some of us actually believe that stuff.
The hospital meetings were routine and/or not great. My second surgical consult was contentious and, as people out here say, very east coast. Amy and I compared notes about it afterwards and it affected us each differently. But, we both agreed the doctor was a bummer. Perhaps it was his job to point out all the options and risks but we didn’t have any good chemistry. And I had a toss-and-turn night thinking about it.
At the end of the day, nights like that are inevitable. It’s a big deal. There will be sleepless nights.
After the scheduled tests, they sent me to some unscheduled tests, “if I have the time.” This is almost funny because it is sort of like saying, “if you want to step over here, you can avoid getting run over. You know…if it’s not too much trouble.”
Amy had not planned to be at the hospital all day (neither did I, but this has happened before). We grabbed some lunch in the underground cafeteria, straight out of Scrubs. It is here that you see the hospital is, for many people, just where they work. Wearing scrubs is a great equalizer. They make doctors look like janitors and vice versa.
The next two appointments were walk-in. These places in the hospital are funny low spots too. Everyone is treated the same, and you see a cross section of everyone at this urban, teaching hospital.
Most people are not doing as well as I am. They are blind, limbless, breathing heavy or slumped over in a wheel chair. They are wearing masks or dressed in suits, old and young. Usually not too young as most of the young ones are over a Children’s hospital. That’s probably a good idea.
Amy said after I got blood drawn, “I now know what it means when they ask if you are short of breath. You aren’t.” She had seen a couple people for whom walking to the clinic made them essentially pant.
When you are asked the same questions over and over, you start to doubt your answers. “Wait. I do get a little winded walking up that hill by our house,” I thought. Well, not like these people. I am fine by comparison.
It makes you grateful but it also sad. I am speaking from privilege in some respects. My heart ailment isn’t causing me to live a grossly different life, yet. But eventually that’s where I’m headed. If not now, then some day.
While I can, I will breathe in deeply and try to taste it. I hope the pre-surgical needs are mostly filled. I look forward to recharging my batteries a bit in the next few weeks and then spending my time, post surgery, figuring out how to live a life that feels like the right balance of personal fulfillment and love.
Intervention on track
I will keep this one short and sweet.
I was approved for the less invasive heart procedure. May 27 is the date.
For some reason, this procedure is not considered “surgery”. It is performed, not by a surgeon, but by a interventional cardiologist. Whatever, they call it, it is surgery to me. It’s just a lot less difficult than a “open heart” procedure.
I have two minor tests before then. A pro forma meeting with a second surgeon at the UW so they satisfy some type of protocol; and the final meeting with the anesthesiologist.
The tentative date for those is Cinco de Mayo. I was hoping to trek up the Pass and ski on that day because it is a fun atmosphere.
Later this month, I go to Boston for a little over a week to visit family and attend Nathalie’s graduation. Then surgery. Then, a summer of thinking of what is important in life, most likely, if I had to predict.
I feel good about the whole thing right now. First, because it is the TAVR and second, everything is now scheduled to happen. There is never a good time for this type of thing in one’s life. But knowing when it will happen is so much better than the purgatory of not knowing what exactly will happen and when it might happen.
Heart in the right place
[I reserve the right to pull this down at any time. I tend to overshare personal details because I am naïve and despite my reputation, fundamentally optimistic. However, if it turns out to be stupid to have this information so public, I will take it down.]
Recently, on Facebook, through inattention and the vagaries of using my phone to answer a quick question, I unwittingly created a bit of a firestorm over my health. I’M SORRRY!
Thanks for the extension of all the good wishes. I really appreciate that. I had confided in some of my homey’s the current situation, which is a I need a new heart valve. Unfortunately, I overshared in the wrong place and that went haywire (gotta look up where that expression comes from).
First the facts, I had surgery to repair my aorta and replace my heart valve 13 years ago. I freely talk about this so at this point, I figure everyone knows. But everyone does not know.
That surgery happened when I was 40. It was very challenging for my family and well, me, too. It was what is called a Bentall procedure and my valve is a Carpentier-Edwards valve.You can read about my account here.
My current situation came to head in February and my routine echocardiogram revealed that my current valve had moderate to severe insufficiency. That lead my great doctor, Fendley Stewart, to recommend that I have a conversation with my previous surgeon, Ed Verrier.
Dr. Verrier quickly summed up my situation by saying it is disappointing that the valve did not last longer but that this is turning out be average. He recommended me to consider a TAVR and began me the process of getting me in the study.
I am now waiting for word on that. In the meanwhile, I am in the intermediate risk category. I probably could live another 2 years with no intervention. But I will get a new valve with this new procedure, in all likelihood before the summer is over.
I was at the hospital getting tests when I posted a status that said feeling optimistic at UW Medicine. I honestly didn’t think that would stir up as much as it did. It has been an object lesson in how to not use social media. I feel the love but I have been there so often over the years for routine stuff that I didn’t think that would be some kind of trip wire for people’s emotional concern. Thanks for caring and sorry for not thinking that through and saying nothing.
So far, the test results are good news because the new valve might possibly be placed without thoracic surgery. It is called a TAVR, transcatheter aortic replacement valve. I was on cloud nine with possibility.
https://www.youtube.com/watch?v=lQDVNPdEC0U
After my first surgery, I went back to work and met a guy Sam. Turns out we were both have procedures on our aortas by the same doctor in the same week. We became walking buddies because that is something we both needed to do after our procedures.
Recently, I told Sam about my need for more surgery. When he asked me on FB about it, I just blurted out my recent news. I didn’t realize at the time that it was a Post on my FB wall for everyone to see. Somehow, I didn’t take the time to grok that I wasn’t responding directly to Sam. My bad. I take full responsibility for that. Sam is still the man in my book and I’m happy to have input from him about pretty much anything. Even politics.
As I get more news, I will put it here. It is a little bit more private and I’ll try and avoid giving everyone a heart attack. Thanks to one of my buds, I was made aware of the gravitas of having just half a story out there.
Encore! Encore! Encore Career
I was introduced to a phrase recently that I found interesting, the “encore career.” Lately, that’s how I have been thinking of my own time.
I have found it hard to focus on the idea of building a business because I need to have some surgery. Without going into a lot of detail, I don’t have any idea how long I will be out of commission. I’m hoping it is the minimum time but how much can you aggressively go after something and then say, “Wait. I need like 8 weeks to feel better. I’ll get back to you.”
Right now things are just not at a point where that is feasible. And I don’t really want to do to do that. I find it is rare for me to really know what I want. Perhaps it is early conditioning to realize that you have to participate in a family or not being wealthy, but what you do and what you want seem to frequently be on different paths.
In the encore career, the idea is that you are in a different financial place and you can take the time to pursue something more in line with what you want. But what do you want? Some people know already, I want to travel. I want to train for a marathon. I want to practice the piano more and teach tuba lessons.
I don’t really know what I want. I would love to know what I want. Do you? Am I the outlier? Rather than that, here some ideas of things I would enjoy doing:
- teach some tuba or bass.
- write some music
- play in a quintet
- teach some adult swimming lessons
- work with small companies to get their business stuff in the cloud (accounting, web site, etc,)
- write about my experiences
- do some writing projects in technology (i.e. my old job)
- develop an app or two
- play a little golf
- exercise to stay healthy
- eat good
- hang out with my wife
- see my family and friends
- write one book – the history of Franco-American
- spend a little speaking French, Italian, maybe learn a little Spanish
- work in my garden (I used to love doing this and lately it feels less rewarding and more like work – why?)
That’s too much to focus on. That’s no encore. That’s more like a season’s worth of repertoire.
So I don’t know, am I just too scatterbrained? Or is the encore idea just not that well-formed. My goal in starting a business was that it has been something that I wanted to do since my first job in a start-up, Graphx. My personality has not been conducive to thriving a corporate environment. I was good at doing the work but not the politics. And my motivations to do better didn’t fit with the means of promotion in the company.
Over the years, I have worked in number of organizations that kept making the same mistakes. I would like to try to create a place where we avoid those mistakes but maybe that’s just impossible.
Sometimes a person asks the right questions
I called my old buddy Mark last week. I expected to vent and hear him say, there, there. Pat me on the back over the phone but he didn’t.
Frankly, I wasn’t helping him much. Whatever I was saying, it was not eliciting the response I wanted. This is not our normal conversation style. That is, I can always count on Mark. I hope he feels the same way. Mark and I have been having “deep” conversations since the 6th grade, in Mr. Feldt’s homeroom.
That’s a lot of conversations. That’s a lot of expectations. And we’ve been through some shit over that time. And our conversations were more frequent and in many forms. Does anyone remember Prodigy? It was like an early Skype. Later it was AOL. Also, like Skype. For anyone young enough, it’s all like texting.
Anyhow… I was beginning to think this conversation was not going to help me. I was getting a little frustrated because Mark kept asking questions. It threw me. And I don’t remember which question exactly, but it was about lesson plans or business plans, maybe Excel. In my head, it was a minor reprobation but a question that betrayed disapproval. I think in his head, he was just asking questions appropriate for the situation.
I heard, “aren’t you the guy who once made a spreadsheet to calculate your ‘disposable time’ in a given week just so you could be depressed about it?”
“Yeah. I did that. But that was the old me. The anal-retentive guy.”
“And you don’t have a spreadsheet for your start-up business? God, you are such a disappointment.”
But really he was just going through a mental check-list of things that he thought I might have done. And it was actually the perfect question. Eventually, I started to see the wisdom of the questions. He was helping me to find my keys and asking if I checked in the car, on the counter, in my pocket, on the dresser? What were you wearing? Did you have coat?
Instead of getting annoyed, I started to listen and he was right. The big hairy beast that was causing me anxiety and tweaking my depression was amorphous. You can’t grab what you can’t see. You can’t pick up a pile of parts. What goes with what?
He was persistent and he pushed through. He might have sensed my frustration, but he knew that the only way to help was to keep trying. Anyone could get annoyed looking for their keys. This was no different.
Thanks, buddy.
This week I did start writing a business plan for eehoo. And it makes sense. I showed some preliminary stuff to a couple people and got good feedback. I was able to begin making it into projects. Funding, writing, etc.
Mostly, though I was able to feel better. And that’s a priceless reward. And it was also proof that a gentle reminder of what you already know is still sometimes worthwhile. Mark said that too. We were talking about politics and he said that he realized something, lately. That people make decisions based more on feelings than logic because that is what they are trying to improve. That makes a ton of sense. It also sound a bit treacherous but that’s for another time.
The planning that I’ve done now, as a result of the convo, doesn’t guarantee success of the venture. Success is never guaranteed. You can’t know the student will learn but you should still make an excellent lesson plan or you won’t even get through the hour. Recalling all this stuff from our past is also something that is precious. I really value it.
Every day I feel busy
Being unemployed has been a tougher transition than I first thought. I don’t have super-crystal thoughts here but let me distribute some of them shotgun-style.
One of the bigger transitions in my thoughts has been self-identifying as an employee of my own company. Thinking of myself as employed by myself is harder than I thought. I haven’t update FB or Linked-in yet to reflect that. Why? Because that is scary shit.
I’m realizing just how much fear plays into the concept of my work identity.
For a long time, as a tech writer, I had an editor. I miss having an editor. Editors are awesome. I get a lot of confidence from having an editor and the relationship I’ve had with my editors has been so productive and inspiring. Not having one makes feel? Afraid.
I’m learning that fear is a big deal if you haven’t already grokked that.
I wake up every day and get a little overwhelmed at what I have to do. And I don’t really have to do anything. I have only felt this busy a couple times in my life. 1) returning to school after taking a semester off, 2) graduate school and 3) now.
I would love to say the problem is “Lack of Structure.” I’m sure it is. But saying it so definitively makes me afraid too. Why? Because declaring it so strongly could cause a me to go down the wrong path. I could make an argument, though less strongly, for maybe you just have “let go. Give yourself a break. Order will emerge from chaos if you let it.”
Actually, this is starting to sound a bit like Kurt Vonnegut. Good sound conclusions that lead to blind alleys.
As I use this blog to clear my head of thoughts and share. I’m doing that. I don’t really want an answer or a suggestion. Maybe a little support and a little understanding. I am putting it out there because this type of “analysis paralysis” is not that uncommon.
Anyhow, if you start seeing some changes with my subtle acceptance that my world exists apart from Microsoft, you will know why.
One of the images I’m working with is the root ball. When you dig up shrub or a small tree, it is amazing how bit and tenacious the root ball can be. I had no idea that my Microsoft identity had such a strong root ball. It has grown in and over a lot of obstacles. It is entangled with lots of my psyche and my personal stuff including my phone. Stuff like that is so basic that you don’t understand how much you rely on it. I had to get a new phone recently and switched to Android. You can read about that at my other blog.
Giving up the Windows Phone was surprisingly liberating. I don’t love the new phone but I feel better using it. Can you believe that? It’s just a phone. So I’m working on it.
I would give people this advice now that my lay-off is hindsight. Keep learning new stuff and keep a world outside your employer. For instance, go get a professional certification for something. Maybe even pay for it yourself. You will feel like you are more valuable. You will feel more independent. It’s worth it and should you need to explore a new employer, you will have done yourself a service like talking a walk for your health. It’s not that big a deal but you almost always feel better afterward.
I was stupid about that stuff. Musicians think if you have the gig, then you have the gig. You don’t have prove anything more. That’s true. But taking a course or going to the community college is for a different reason. I passed up getting certificates in training I took at Microsoft. Why? Because I already had the gig. No one was ever asking me if I was a Certified Scrum Master. I was a scrum master already. But I wish I had completed the paper work to get that certificate. It was offered.
But mostly, I wish that I had expanded my knowledge and breadth of contacts to continually show there is life outside my narrow little view. That’s what I wish I did differently. I would have helped me now and I would have felt good doing it.
You need a guide sometimes
(originally posted to facebook on January 30, 2016)
Somehow in ripping my CDs over the years, I lost my Jeff Beck CDs and LPs. So I’m ripping them in ALAC and FLAC as an experiment (high def in other words). It got me thinking of my cousin Jimmy. He was one of my musical guides.
Erin, Bob, Keven -tell your dad, thanks from me. He made me listen to Old Jeff Beck and Old Rod Stewart among others so that I wouldn’t be a rock and roll rube. And he bailed out my ass several times, fixing my car, teaching …me to be a bit more self sufficient, the expression “I’ll buy, you fly” and to enjoy a Friday after work beer.
And when my bass got stolen and I needed one, his Fender was loaned up without a thought. That means even more to me now. He was an “older brother” figure. That’s a real thing. I know Jim isn’t on FB but his kids are and his siblings. Thanks to both Jim and Joan for always having an open door for this dipshit. And Jeff Beck for helping remember this.
Happy New Year 2016
Typically, there is a lot of reflection around January 1. This is no exception, but I am a bit to low on the creative energy to go too deep.
- Since being laid-off in late October, I have been in some kind of period of reflection of my work life. I feel surprisingly optimistic about my work prospects for the future. I have a lot of hope that I can build a work life that works for me. I have a lot of positive thoughts there.
- Amy and I have continued our transition to an empty nest. As you might guess with college age kids, it isn’t really empty 100% of the time. That suits us. But, as time has passed, I am also beginning to see the need for us to adjust the exhibits in the museum. We are moving stuff around in the house and trying new experiments with what works for us. More change to come. I feel good about.
- Last year, I lost weight. My cholesterol improved. I look forward to continuing that so that I can transition from being a “loser” to a “maintainer.” I feel good about that too.
- There were some tough times last year as Amy’s parents both shuffled off this mortal coil, if I might put it in the words of Shakespeare. That provided challenges in many complex ways. But through a lot of hard work and time on Amy’s part, she has been able to move forward and regather her strength. I hope she feels good about that.
- More than anything else, I feel that we are both moving in the same direction in our broad lives. That feels good too.
- In the areas that are challenging, I am making changes. This isn’t easy but progress is being made. I have no doubt that some efforts will fail and some will succeed. As we get the results, we will continue to refine and try again. Perseverance is really our only tool here. I don’t feel great about this but that is ok. I feel like I have the will to keep at it.