A dear person to me is imminently terminal

I've alluded to this a bit previously.

I still don't think I should be going into the details in public, but yes, a very dear person to me was just given a confirmed diagnosis which means this person will die. It could be very soon or "just" soon.

What makes it especially hard for me to both cope with and talk about is that there are some deep level connections / resonances between this and something which happened to/with me when I was in the hospital, something I've still not figured out how to talk about.

So... thought I should at least make it clear that there is imminent loss in my life.
We're frantically trying to work the logistics of my many tests and scans and doctor's appointments such that when the imminent becomes actual I will be able to go to the funeral.

If you know me from real life, odds are you know this person. If you don't, its certain you don't.

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About this poignant picture

Given the circumstances, I had to go with something true to my deepest artistic sensibilities. The picture is from the Wiki commons-

Jheronimus Bosch 4 last things (death).jpg

Dancing with Ambrose in my wheelchair (Not disabled, logistically challenged)

Ya gotta have the fun that's there to be had!

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Not disabled- logistically challenged - Precious Papillon and wheelchair dancing by Rev. Peter (Mr. Dr. Tess) List is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at sonnet99.blogspot.com.
Permissions beyond the scope of this license may be available at sonnet99.blogspot.com.

Video log from Jan 26 - Logistically Challenged, not disabled - winter ADLs

Art Therapy- Video of the Papillon playing in their/our terrarium

I've renamed my main blog "half a page of scribbled lines" after the great line from the longest charting album of all time, Floyd's Dark Side of the Moon

With all the half pages... I decided I needed to do art for its own sake, and this was fun.

My wife and I see such scenes often, but its rare that I am able to get good video of it because the little dears often put their muddy paws on the window.

I repeated the video clip both because the jazzy version of Dance of the Sugar Plumfairy ran long, and to get back to doing that sort of thing... being "me"... this is an "activity of daily living" for me... or it was before all sorts of mayhem broke loose.

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Papillon Terrarium- Winter Frolic set to Dance of the Sugarplumb Fairy by Rev. Peter (Mr. Dr. Tess) List is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
Based on a work at sonnet99.blogspot.com.
Permissions beyond the scope of this license may be available at sonnet99.blogspot.com.

Endocrinologist 1/27/10 & another reason I may not be online much

Yesterday's visit to the endocrinologist went very well... much as I had hoped and expected. Tess and I were struck by how all the things we discussed and tests he ordered were the things we'd both been wanting to explore since...oh...Nov 10th or so (a week BEFORE my leg went out, for those of you keeping track.)

So, got those and one more scan- a Dexa scan- then we reconvene in three weeks.

(Incidentally, in the course of this, the calcium levels came up / out- by themselves, they're good... as expected... .)

Next Tuesday, I see my orthopedic surgeon to explore resumption of full weight bearing and the details of my future course of activity, what sort of pain levels should persist, how long, etc.

So I'll be plenty busy dealing with all these doctors' visits... almost feel like I need a medical secretary just to keep track of it all!

I have started making inquiries to gain the information I'll need such that once we know what's going on with my body, WE can make a good decision about future vocational / educational issues. (Radiology was suggested by a well informed person close to the situation, and has much to commend it.)

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However...

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Another event happened yesterday which will doubtless affect how much time I spend online... where I'll be when, etc... for some time to come.

If you know us well, you know one of my family's hometowns is a bit to the north of Indy. A situation has arisen with the health of a person there which is quite alarming and has hit all concerned quite hard. As it plays out, it will take more of the family's time, attention, focus, energy, emotional resources.

I believe that's just enough information for those who know us well enough to know what I'm talking about.

That's all I care to say on the matter in this ueber-public place.

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General trajectory of pain, range of motion, etc is good. If I overdo, my body tells me, so... live and learn.

Tess and I are getting outside together more... she shot a couple of good videos of me which I hope to upload soon under the title "Not disabled- logistically challenged."

Good thoughts and wishes to/for all out there!

AVN/osteonecrosis- NEVERMIND

NOT avascular necrosis of the shoulder. So next stop... endocrinologist next Weds!

When first heard avn from oncologist, knew I needed to get a ruling from my orthopedic surgeon.

Perhaps there is some such going on, but if so, its not shown by the MRI of my humerus, and my orthoP took flat film x-rays to confirm.

Talked about general situation... he's pretty confident that if there's anything to be found, the endocrinologist will find it, and that's what I've suspected from the start, so... .

In the mean time, pain has "plateaued-down" at pre-Nov 17th level. Mind you, that pain were still the worst I've had in my life to date, but it means I have some time each day where the fog of pain recedes enough to think.

I've been outside doing the sort of exercise and productive puttering allowed by my state of healing for three days in a row. It feels very good. Will doubtless do so again today.

First though, I need to go back through my back-posts here and make sure I spelled my doctor's name right, etc. I took a general thank-you in to the doctor's office yesterday, and I was in a bit of a fog when I wrote it & MASSIVELY mangled his name. Fortunately Tess was clear headed then, so between the two of us... *grin*

Living life well & Another good link on osteonecrosis

This morning my mother, wife, and I went for a "walk" down the street. (Those who know us well know that we live in one of the hillier parts of Indy, there's no level land on our street.) We went down across the bridge, then up a slight grade to the northern terminus of our street. Using both arms and lower legs, was able to do without assistance. It felt good physically, and even more so emotionally. Enjoying time with dear people outside is one of the things which makes me tick, so doing that together was very beneficial and rich with symbolism and poignancy.

Came across a GREAT overview of osteonecrosis (avascular necrosis, aseptic necrosis) on Google Health. It is here.

No new developments... don't expect there to be until I see the orthopedic surgeon Friday. It has been over a week since oncologist took blood and urine tests looking for monoclonal antibodies in the seemingly never ending quest for cancer, and haven't heard anything, so... .

While generally I've been pleased at how wonderfully attentive and aggressive my doctors have been, and I've tended to keep editorial / societal commentary to a minimum in posts like this which start out at my "general public" blog named after Tess' favorite sonnet, allow me a little rant here about our society's obsession with cancer.

The "logic" seems to be...

• There's something wrong
• We can't find a reason
• It must be cancer!

While I'm very knowledgeable about my own body, and pretty well versed in matters medical, I'm not a doctor. Yet I've never thought I had cancer because I've never seen nor been shown any reasons or evidence to support it. There's no history of it in my family, I've not been working in a chemical plant in the third world, etc.

So at this point, I find myself a bit tired of this seemingly never ending quest for something which a biopsy, multiple scans of different types, and so forth, has not shown any evidence for. How long can an argument from silence be maintained?

Its not as if this endless pursuit of nothing has no cost/consequences either... getting anywhere for anything is a major logistical operation for the family and for me. While my pain has been decreasing and range of motion and ability increasing, my energy levels are pretty low.

GENUG!

I have a problem in my right humerus- I'll be seeing my orthopedic surgeon about that Friday. Good- if there's something to be done about it, he's the one to do it. He did a cracker jack job on my femur!

I'll be seeing an endocrinologist who specializes in disorders affecting the skeleton next week... Good! We've not pursued that angle yet, and I've long suspected I'd wind up working with someone like that to finally determine the etiology of these problems with my bones.

I see reason for and benefit to these activities, and am quite looking forwards to them.

Shoveling snow in a wheelchair & a vlog

Shoveling snow in a wheel chair

Vlog

Avascular necrosis in my right humerus indicated by Weds' MRI

Just found out the results of Weds' MRI. Don't know much more than that its there at the top of my right humerus (upper arm) bone near the shoulder joint. Not even sure which of my many specialists will be treating it, what the treatment will be, etc.

The simplest explanation of this in layman's terms I could find it this one.

A more thorough but still generally understandable treatment is here.

A detailed clinical discussion specific to avascular necrosis of the humerus is here.

This is all very new to me, just heard, but skimming over it all yeh, does make me wonder if that's what happened with my femur, and may be happening a few other places.

My "rebar" is a Gamma Nail - where to find out more | Kudos Dr.

Been wanting to post about this too, but decided to just pop the link to the manufacturer's site in a separate post.

Its pretty fantastic what they can do, and I'm so fortunate to have landed with a doctor- Sieber- who could do this for me.

So here's the links...

Manufacturer's Site.

Source of photo (no its not me)

A detailed study from the UK.

Another week, another doctor's visit, scan, etc - Kudos this week to the radiology department of Community North Hospital, Indianapolis & Dr. Logie

First off- I again want to thank everyone online for their patience, understanding, and forbearance while I'm off line. I understand what's going on with me... I've seen it in my dear Tess for years... pain has a way of short circuiting the brain.

So...

Yes, I had the follow up with the oncologist on Tuesday. It went entirely as expected. He referred me to an endocrinologist who specializes in disorders affecting the bones. I see that doctor on the 27th.

Out of due dilligence, he also ordered two follow up scans- an MRI on my right humerus bone and another full body bone density scan.

I had the MRI yesterday, and I gotta tell ya... if we made terrorist suspects go through this sort of thing, the ACLU would be raising holy havoc! It lasted two hours. If you've never had an MRI, its like being locked inside a really narrow cement mixer while someone bangs on it with a hammer.

Kudos and thanks to the Radiology Department at Community North Hospital, Indianapolis. My techs were Brad and Ricky, and they were tops! Brad even remembered me from my MRI in December. They were proficient, attentive, compassionate... and not just to me, but to my mother and Tess.

The attending radiology doctor did well by us too, but I didn't catch his name. There was some uncertainty about where to focus the scan, and he was able to look at my previous scans and the doctor's orders so that they were able to get the scans most relevant and useful.

We've been told to expect the results back by tomorrow, which is commendable as well.

Everyone else we interacted with there- from the valets to the greeters, were good as well.

So... why did I get that scan? I can only speculate. I know there were irregularities in previous scans all over my body. That they focused on this spot must be that it was especially troubling.

Gotta give props to my oncologist / hematologist - Dr. Keith Logie - He ordered the scans himself instead of punting it over to the orthopedic surgeon.

He also answered some other questions I had which he could well have punted on.

His office staff were all great as well... I hope I never have to see them again, but anyone who does have need would be blessed indeed to have such compassionate and capable people as those at the Central Indiana Cancer Center- Fishers.

Next stop then the endocrinologist on the 27th... and down the line, probably an episode on Mystery Diagnosis or House. (Can't take credit for either joke- friends suggested them.)

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Other developments with me and Tess

• Pain levels slowly ebbing,
• Range of motion continues to increase.
• Based on Dr. Logie's advice though, I am going to take the heavy lifting stuff easy- after I shoveled snow from my wheel chair last week, rib cage with "hot spots" got sore, so 20 pound limit.
• Tess is over her chicken pox.
• I told her she'd better not come down with scurvy or leprosy before my next doctor's visit!

Needle hunting postponed till Tuesday, shoveled snow today (in my wheelchair)

Couldn't make it to the oncologist / hematologist yesterday due to the weather, so. Rescheduled it to Tuesday morning. I hope Tess' pox will have cleared up enough to come with me then. I don't know what else they could scan or test though, I've had so many... every square CM of my body's been scanned at least 3 times by three different methods. The areas of particular concern have been scanned four or five times. They must have drawn out a pint or two of blood to test for cancer markers in the hospital too, so I don't know what else there is to be done to find the cause of this, but I sure would like to get it figured out!

Did get out in the snow in my wheel chair yesterday and today. Even shoveled off 1/3 of the driveway today. Tess shot video, she came out with me, but too worn out now to post.

How nice, first murder of the year in Indy at the apartments at nearest stop light

This murder occured at the apartment complex southeast of the nearest stoplight.

Those apartments were rough when I was a kid... now I can only imagine!

You can see this lovely intersection here



When we first moved here a year ago, there was a drive by drug related shooting which ended at the gas station at that corner too, yet shortly afterwards they moved the public safety camera from there to the Monon Trail.

Gotta get back on my feet to resume my "human scarecrow" duties!

The Indiana Orthopeadic Center & Dr. Sieber have done wonders for me - Post-op visit and general kudos

I had my post-operative visit with my orthopedic surgeon yesterday. It was a long but very pleasant visit, as indeed they all have been. The folks at the Indiana Orthopeedic Center have all been wonderful. I've been trying to take down names of people so I can write specific letters of commendation and thank-yous, but if you're somebody who works there, and you've worked with the tall black haired guy who's always working on a rug, I'm talking about you!

( We stopped at the dollar store after the visit and I bought two packs of thank-you cards, but I think I'm going to need more.)

The surgeon who worked such wonders for me is Dr. Jon Sieber He placed a 14 inch by 1/4th inch titanium rod in my femur. Its quite impressive. The ends of this device which anchor in my bone have heads like a dry wall anchor. I wish I'd asked him the precise name of the device, or for permission to take a picture of my x-ray, etc.

I went there on crutches and the receptionist smiled and said "This is a surprise"

When I asked her why she explained that it was surprising and nice to see me not in a wheel chair.

Of course they took x-rays... many, since I'm as lengthy of stature as I am of speech. The nurse was very pleasant too, and she surprised me when she said "I wish all my patients were as cooperative & understanding as you." Now, I don't think of myself as a particularly patient person, nor especially nice. I do at least my share of griping, but not at people who are helping heal me! I heard similar comments in the hospital. I'm glad my health care team appreciated my attitude, but I don't get why people would grouse at them for doing their jobs when their job is fixing you! Its not like they wake up in the morning and say "Oh goody, I get to torture that freak who's always working on the rugs." Sure, some of the x-ray positions hurt, the IV and CO2 meter in the hospital were hassles but... anyway, as above, that's why I make it a point to write thank-yous... they don't get NEARLY enough appreciation!

As for my situation, the etiology remains a mystery, but the doctor is pleased with the progress of my healing and my activity.

I'll be on crutches and off driving for a month. He wants me to say at partial load bearing the next two weeks, and work towards full load bearing and being off crutches by the time I see him in a month.

Tomorrow I see the oncologist- though I have no idea why...

• the biopsy of my femur marrow came back totally clean,
• had blood tests for all possible cancer markers, and they were all clean
• Every square centimeter of my body has been scanned at least once, some as many as half a dozen times by at least two different methods (x-ray, MRI, CT, ultrasound, & dye contast bone density.)

I believe there is still some concern about osteopenia or osteoporosis. Cancer was explored as a possible etiology and has been ruled out by the extensive battery of tests. So perhaps the oncologist will want to explore other disorders which though not cancer could still be responsible for my bone having disintegrated and broken?

Tess seems to be done breaking out with new pox, and my mother bounced back from her fever/stomach problems.

Thanks for all the love, prayers, concern, support.

Exhaustion dims the mirror and increases the pain

I continue to be on the mend, but after I resurfaced onto the web, life around here went nutZ.

Tess' chicken pox became so severe that she was almost ready to imitate Cartman and take a bath in calamine lotion. (See "Chicken Herpes")

My mother woke up to the New Year with a high fever and vomiting.

So my brother and I went shopping for them. That was really pretty cool- I wanted to have more sense of family and community than I'd had in Chicago, and it has VERY much born out here, especially during this preposterous what-ever-the-Krishna-is-going-on-with-my-bones period of life.

I did the entire shopping trip on crutches, with my brother pushing the cart. Not surprisingly given my mad bongo skills, it went great.

However, the net effect of all of this was increased exhaustion and pain.

There is a very strong link... can't tell if its a 1:1 scale, or if at some point you get so tired that your body becomes hyper aware of pain.

Either way, today I'm at about 2/3 of where I was when I resurfaced, so I'm going to take reengaging the world via the web slowly. Taking time and rest and healing has to be my focus...

My mother is doing better, her fever broke yesterday and hasn't had any more GI problems. As for Tess... I'm going through the house looking for every zinc containing skin product we have.

The ground is frozen here, such that I can roll my wheel chair across the yard, so I'm planning on going round the house and across the yard and being upstairs a bit today for the first time since I came home from the hospital. Its great that I am so adept at using the crutches, I'm sure the doctor will give me a gold-star-smiley-face for that Tuesday, but they're quite unsuitable for traversing a frozen slightly snowy yard.

Tess update: 3 white spots on back of her throat- cause for alarm?

Took pictures of them so she could see them, could upload one later if anyone thinks they'd be able to tell us something from them... right now just killing time waiting for my shopping ride.

My mother has stomach flu / Crutching & PT going well

Why not... my mother seems to have stomach flu- high fever, chills, vomiting...

So I'm headed out presently with my brother to do some emergency shopping- gatorade etc. I'll be on my crutches and my brother will follow after with a cart.

There's no doubt now that Tess has chicken pox.