Showing posts with label Health and Medicine. Show all posts
Showing posts with label Health and Medicine. Show all posts

Monday, May 03, 2021

Time to go BACK to War

 I had a consult with my oncological surgeon... and it was pretty bad news. 

What it comes down to, is about an 85% chance that I'll be gone within a year, and about a 15% chance of survival. 

I'm attaching two pictures here. These are frames from my PET scan with contrast. The hotspots circled in red are definitely cancer, that we already knew about. 


Those are in my neck. The rest, are in my lungs, and that's the problem.

The hotspots in green, are almost certainly cancer... That we didn't know about until the PET scan. It's not confirmed, but it isn't just a hot spot on the contrast, there's also some visible structure in the CT... it's about 85% certain that its cancer. 


... And this cancer would be inoperable. 

The orange hot spots are potentially cancer, because of the hot spotting, but they don't have much or any structure visible in the CT without contrast. They're only about 15% likely to be cancer. However, if they are... then they're likely not treatable, and I likely only have a few fairly unpleasant and painful months left to live. Less than a year certainly. 

If the only new cancer is the green, then theres a good chance that I am a good candidate for immunotherapy. My care team is consulting with several different oncology specialists now, and will get back to me soon with potential treatment options. 

My next year is... likely going to be very difficult, and very painful. If the treatment works, great... but it's gonna REALLY hurt the entire damn time.

I'm not sure how much longer I'll be able to work... My plan is to work as long as I can, and then try to use my short and long term disability insurance... See how that goes.

But what it comes down to... is that I'm probably dying. 

If that happens... I'm OK with it. I came to terms with that back in 2012 when I had just a 4% chance of surviving. 

But my plan, is to survive, at least long enough to see my son graduate college... and he's got another at least 14 years to go... so... time to go back to war. 


UPDATE:

I had my first meeting and first sample collection for the first series of genetic testing, with my new oncologist. 

She's one of the leading oncologists in biologic and genetic immunotherapies. The good news is she thinks that yeah, the large defined mass circled in green is almost certainly cancer, but there's a good chance the orange stuff is either not cancer, or is not sufficiently advanced that it I wouldn't be a good candidate for immunotherapy, and that I have a good chance of responding well to it. Maybe double or triple the chance of surviving a year or more than my surgeon was thinking... 

...If... and it's a BIG IF... 

...the genetic testing comes back showing that I am a good candidate and the cancer is the right kind of cancer with the right genetic and molecular makeup.

Oh and yeah, there's apparently new kinds of pathology and new kinds of molecular testing of the cancer tissues that helps them tailor the treatment exactly to your cancer, with biologic or genetic immunotherapy. 

I'm having a biopsy in the next few days or week and they'll send that tissue out for both genetic and molecular analysis, as well as conventional pathology. Those various series of tests are going to take 3 to 6 week.

So... yeah... I'll know more in 3-6 weeks.

Friday, October 09, 2020

Well... Hell... Time for Round 5

 





I have been struggling with when and how to talk about this for a while now...

A few months ago, my blood sugar started rising again... after having been falling on its own without requiring insulin for almost 2 years. I also started having recurrence of other symptoms, which I had experienced 4 times before...

As it happened, I was starting a new job, and my new health insurance wouldn't be active until September 1st... and then I had to get a new endocrinologist and get the process of confirming the diagnoses started. 

I just got the ultrasound report back today... Its been an almost two month process to get here... and the cancer is definitely back.

Well... hell...

The good news... so far it doesn't look bad. Only 13 suspect masses, 10 of which are small and may not be cancerous. 3 larger ones are definitely cancer... they're all more than in inch in every direction.

That said, they are all round or ovoid, and they're free not implanted or infiltrated... I can actually move one of them around with my fingers its close enough to the surface... and the larger ones seem to be encapsulated well. 

Those are all good signs. 

I've also had supporting blood work, which was mostly good... my CEA, creatinine, calcitonin, and thyoid antibodies are all good... which means there is no recurrence of medullary or C-cell anomaly cancers. My thyroglobulin was pretty ridiculously high (1800) and theres some kidney damage that is probably leftover from the rhabdo and the paraneoplastic insulin resistance... but may indicate spread elsewhere. 

Next steps are biopsies of the masses, and then a full body contrast MRI to look for distant masses.... particularly on other organs. 

The good news is it looks like there was no spread into my chest... the cancerous nodes all seem to be among the few left in my neck after the last three radical neck dissections. None of them were in the mediastinal area, which would indicate direct spread... There's still a chance for distant spread, but hopefully it's just local lymph nodes... the MRI will confirm.

So... hopefully, the solution should be just another round of surgery... maybe another round of radiation after... we'll see. 

My work is 100% supportive of me, it should all be good there. And I should be able to work right up to the surgery, and be back working the next week.


Saturday, January 20, 2018

What is it, and what does it mean?

I was asked a pair of fundamental questions:

What is your definition of disability?

And...

What does having a disability, or being disabled, mean to you?

Very BIG questions those... with very big answers...

A disability, is some functional area that requires a "normal" or acceptable  level of effort and difficulty for the large majority of the population, and which is considered "normal" and important to living life within a society; for which some people have either a total inability to satisfactorily function in that area; or for whom doing so, is so difficult as to cause significant problems in that person's life; or for which they require special assistance to function in such a satisfactory manner.

These can be physical, emotional, or mental.

That definition should I think, adequately address the functional aspects of both questions... social and emotional aspects are FAR more difficult and complex.

So... what are my disabilities specifically?

Well... I have limited mobility due to multiple severe musculoskeltal, and neuromuscular injuries, some with degenerative aspects in my joints and connective tissue; as well as arthritis relaated, and endocrine disfunction related inflammatory issues, which are also degenerative.

The pain from these also has general, and cognitive, disabling effects.

Then, further, I have general and cognitive disabilities, caused by stage 4 metastatic lymphocytic endocrine cancer, with thyroid, pituitary, adrenal, and gonadal insufficiency and disregulation; with associated paraneoplastic syndrome (including paraneoplastic insulin resistance), and degenerative neuromuscular and connective tissue issues.

I used to have near perfect eidetic memory... now there are times I can't remember the names of good friends, or the terms common to my profession which I have PhD level education in, and which I teach others at a postgraduate level.

There are times when I can't sleep for days... my record thus far is 12 days without full sleep (I was able to partially doze for short periods but could not reach full sleep), and more than 6 days with no sleep or rest at all.

On the other hand, there are times when I am overwhelmed by fatigue and the irresistable need for sleep, which when I am overcome, results in my sleeping for anywhere from 20 minutes, to 20 hours.... but the "sleep" is not restful or restorative.

I gained 200lbs, in less than two years, while on a restricted diet... because my metabolism simply slowed down, and I retained huge amounts of excess fluid. So much that I can still easily gain or lose more than 20 pounds in a single day and as much as 68lbs in three days, and 87 pounds in 5 days.

...Because of a specific spinal injury and little over a year ago, which caused rhabdomyolisis, partial kidney failure, and muscle death... I lost approximately 30% of the muscle and nerve tissue on on the left side of my body, from midback, down to my left foot andntoes.... I have spent the last 16 months, basically bedridden...

... and and of course, I am on my  third go around with this cancer, that is doing its best to kill me...

That's just a small subsample of the issues that have developed over the last 15 years that I have been fighting my illness.

So... it's understandable why I look in the mirror and sometimes, see a stranger, who only barely resembles "me".

Socially and emotionally... For me... I'm not someone who has ever given much of a damn about what other people, or "society" think... I am internally motivated and internally validated, almost entirely.

I am also someone who, for most of my life, both physically, and intellectually, outperformed almost everyone... There was very little I couldn't do, if I was sufficiently motivated... to a level that others might consider insane in itself...

For me... emotionally... what having severe disabilities has meant.. was that my body betrayed me, and made me... not me anymore.

Flowers for Algernon...

Thursday, March 31, 2016

What I'm Up Against

So... Just so you guys know what I'm in for next week... and the next few months...

The surgeon had a cancellation, and now my presurgical consult is on the 6th, and I'm tentatively scheduled for surgery on the 7th... there may be a conflict with the OR scheduling, in which case it may be the following week, we're not sure yet.

At this point, most of the lymph nodes in my neck are cancerous... at least 9 are over 1.5cm... a couple of them are over 4 cm... it's not great. A couple of them are just under the surface of the skin, and you can actually see them distorting my neck.

I'm going to have what's called a radical neck dissection.

Basically, my entire neck, and parts of my shoulders and upper chest will be cut open and dissected to ribbons, pretty much down to the bone, including at least separating, if not severing, most of the muscles, tendons, and ligaments in my neck...

They do this to get room to see and cut out the cancerous lymph nodes, and other masses, and then one or two more lymph nodes beyond the cancerous ones.

That means they'll be cutting up all the muscles that I chew with, swallow with, hold my head up with, speak with... yeah...

They may also need to cut shoulder muscles... and there will be some tendon and ligament damage, even if they don't have to cut any of them... and they may need to cut some of them...

Worst case, they may have to go into my chest, under the sternum, and around my lungs... We know that the lymph nodes around the mediastinal notch are cancerous, so they're going to have to go at least that far... if they have to go more... Well, that's not great. It basically doubles to triples the trauma, and the recovery time.

...and there is likely to be substantial nerve damage no matter what, including potentially some nerves being completely dead permanently.

After my surgery, I will need to stay in the hospital for anywhere from 2 or 3 days, to more than 2 weeks, depending on how my healing gets going.

I won't even be able to chew, swallow solids, speak much, or hold my own head up... for at least 6 weeks, and possibly as long as 3 months.

... and it's going to hurt... a lot... the whole time...

I may permanently lose a lot of strength, mobility, and control, in my head and neck, and may suffer permanent pain, from the damage.

I may also lose the ability to raise my arms... or raise them above waist or chest or shoulder level... or I may need to go through extensive rehab and PT to do so...

It's possible I may lose my voice, in whole or in part, for an extended period of time... Possibly permanently.

Oh and I'll be on a liquid diet for at least the first six weeks, possibly as long as 3 months.
Then, as soon as I am healed enough to be beyond major risk of secondary infection, and I can get up and out of bed without assistance... that's when the radiation starts.

... And that's another three to six months of baseline recovery time, depending on whether I need one or more courses of radiation...

During the radiation, I will have no immune system, and I will also be dangerously radioactive to other living creatures... Including my wife, my son, and my dogs... so I will have to be in isolation... One of the reasons we kept this house, we because it has an area where I can be in isolation.

That's gonna be fun...

... and then 18 months of recovery time for all of the above after that... Recovery from radiation, rehab and physical therapy, and hopefully getting some of my immune system back... Basically all the things I went through in 2012 only worse.

God...

Yeah... I'm really not ready for this again... It was... living hell the first time around... now...
... The only thing that keeps me going, is that I need to be there for my family...

If anyone wants to help out... Melody is handling everything because I'm going to be useless for months... but we can always take donations through paypal at chris@chrisbyrne.com and here's the gofundme link:

https://www.gofundme.com/kdmtkm6k

Thursday, December 31, 2015

So... its a bad news good news kind of thing...

God I had hoped I'd never have to write something like this...

The bad news, is that I definitely have either a recurrence, or additional metastasis, of cancer... Either way, this still counts as stage 4, as it has spread to multiple systems.

The cancer appears to be in at least one of my parathyroids, and at least 8 of the lymph nodes, around my thyroid bed (left and right sides, and bottom at least... and its likely to have spread to most or all of the anterior cervical and superclavicular nodes). Most of the enlarged nodes are under 1.5cm, but at least one of them is grossly enlarged to over 2.5cm, and at least one parathyroid is grossly enlarged as well.

So yeah... technically, I have stage 4 metastatic lymphocytic cancer...

That's pretty bad.

The GOOD news is that it doesn't seem to have had any distant or systemic lymphocytic metastasis, or metastasis outside the typical local spread common to these kinds of cancers.

The BEST news... It doesn't seem to be either of the two REALLY bad varieties of cancer that it could have been (there are strongly negative indicators saying it isnt).

If it was one of those, it would be effectively untreatable, and I'd have a few months left to live on the outside.

It's HIGHLY unlikely to be either of those, based on existing blood test results, and general evaluation of the current diagnostic data. This will be confirmed with pathology on the tumors, and further blood tests.

So, yesterday afternoon, I had FIVE FNA biopsies (somewhat uncomfortable having needles stuck into your neck over and over again... and it stays uncomfortable for a coupel days), and more blood tests; to narrow down what the cancer subtype and pathology are exactly.

Once we have that nailed down, I"ll get more imaging to ensure it hasnt spread further (there's a moderate probability it may have spread to some of the nodes in my chest as and a small chance it could be in my liver or in other areas).

It could still be one of several moderately bad types of cancer, or a greater than anticipated metastasis; with as little as a 40% positive short term and 25% positive long term prognosis... but that seems unlikely at this point.

Most likely, I have something like a 75% to 92% positive short term (1 to 5 year) prognosis, and a 40% to 80% positive long term (5 to 10 year) prognosis.

So that's good.

I'll write more later...

Saturday, July 25, 2015

Acronyms, and Zebras, and Quarter Billions

Hah.. remember how I've mentioned that my cancer was not only incredibly rare in and of itself, but that I had an incredibly rare form of it (which is one reason why it took years to get a diagnosis)?

Well, today I was looking up some of the long term side effects of the cancer in question, and I actually found a paper about the specific incredibly rare presentation that I had... Which was really cool, because it even has an acronym.

In particular, I had atypical Multi-Endocrine Neoplasia (MEN... tentatively classified as an atypical MEN2 presentation), presenting with primary thyroid carcenoma, and non-metastatic undifferentiated micro-lesions (meaning they were only a few cells each, and couldn't be biopsied or typed accurately) of the pituitary, adrenals, and other endocrine tissue.

These microlesions, and possibly the specific type of primary cancer, also caused associated paraneoplastic syndrome, Basically, they makes your endocrine system go out of control, and make your body act like it has other diseases that it doesn't have.

Most prominent in my case, I developed many of the gross symptoms of Cushings disease; so much so that they attempted to treat me for Cushings at one point. However, the treatment actually made me worse, and the next series of tests showed that I absolutely did NOT have Cushings (but at that point, they still had no idea what I actually had. It was another 2 years before they found the cancer).

Notably, while I had microlesions of the parathyroid (along with all my other endocrine tissues), and reduced parathyroid function (I still do in fact, but I have enough that I can metabolize enough calcium as long as I drink a lot of milk or orange juice, or have a few calcium tablets a day) I had no significant parathyroid masses, and no pheocrtomocytoma (I had microlesions, but not large tumors).

These are atypical for MEN2... and for MEN in general. In addition to the currently formally classified MEN1, and MEN2a, MEN2b, and MEN2-FMTC (which is still controversial and not universally accepted),  they are considering making classifications for MEN3 and MEN4 variants which include such presentations.

MEN2 is in itself incredibly rare... Something like 1 in 500,000 people have the genetic anomalies for it, and most with the anomalies don't ever present with the symptoms necessary for diagnoses. Most doctors... even most oncologists and endocrinologists, will never see a case of MEN2 in their practice. Then further, MEN2-FMTC may be as few as 1 in 20 million.

...But that wasn't the new info.. I already knew about MEN2 from way back. The FMTC part IS new, because that has only provisionally come into use in the last few years, and as it happens I had what appears to be a further sub-variant of FMTC, based on the type of primary thyroid tumor I had.

Because what made my presentation atypical (and difficult to classify properly) and even more rare, was the type of primary thyroid cancer I had developed.

The most common types of thyroid cancer are papillary (about 70-75%), and follicular (about 20-25%), with all other types representing less than 5% combined. Of those, medullary is the most common (about 3%), with anaplastic cancers conventionally considered the rarest (less than 1%).

There are a few more rare presentations however, particularly "mixed" or "complex" presentations, where two or more different types of cancerous cells (mixed), or two or more different types of anomalous cancer cell structures or structural abnormalities (complex) occur, within the same tumor. When these happen together, it's a "Mixed complex" presentation.

My tumor exhibited complex mixed papillary, follicular, and parafollicular (medullary) structure, poorly differentiated, with grossly enlarged and malformed nuclei.

As it turns out, it's possibly the rarest form of thyroid cancer... So rare that they are not sure if it should have its own classification, or not... But they made an acronym for it anyway: MMFC (Mixed Medullary and Follicular structure with C-cell presentation... Which may also include papillary and non-epithelial structures as well. These are WEIRD tumors).

How rare is it? As of 2000, only 40 cases of my primary type of tumor had been confirmed and documented world wide... and of those, only 2 were in males, both of whom had MEN2 (as did about 1/3 of the women).

40... total... ever.... (or at least since 1908 when the first was recorded)

According to the best estimates I can find, approximately 10 billion people have lived on earth between 1900 and today. 40 in 10 billion (well... 41 including me, but we'll round off)...

That's 1 in 250,000,000

 Basically, 1 case in America alive today... me... and another 25 or 30 all around the whole world.

...Though to be fair, it's likely there were more, they just weren't documented; either because they died quickly and their COD was just listed as "natural causes" or "thyroid cancer"; or because the disease was treated before it progressed to the point where MMFC could be diagnosed.

...Or they just didn't notice that it was MMFC, because the presentation is so rare, that histologists and pathologists don't look for it, and assume it's a bad test when they see it (it can look like a bad sample, or one that's been contaminated with cleaning solution or something similar).

My first biopsy in fact, while it showed this unusual presentation, was also annotated by the lab as "inconsistent and unreliable", and they considered it "inconclusive". The pathology wasn't confirmed until the post-excision analysis.

Of all the documented cases, those that progressed far enough, ALL had the same tumor progression. They began as relatively slow growing mild malignancies through stage II. Then after reaching between 10 and 15cm, they exhibited rapid anaplastic transformation, reaching stage IV in a matter of weeks or months. At that point they became extremely aggressive and invasive undifferentiated anaplastic malignancies, with lymphovascular infiltration, and invasion of nearby tissues.

... Which is exactly what mine did.

My cancer had aggressive vascular infiltration by the time they excised the primary mass (the doc said it had built its own blood supply with a couple large blood vessels, and dozens of small malformed blood vessels in and out of the capsule) but thankfully hadn't gone aggressively lymphocytic, because the tumor had remained encapsulated. There were a few small clusters of small speckles of cancerous tissue throughout my body, and LOTS of tiny speckles all over (I lit up like a Christmas tree on the body scan), but there were no large distant masses, or large or dense clusters of cancerous tissue.

When they did my post surgery followup, and got the pathology report, they told me that it was the strangest (with the mixed complex structure) and most aggressive anaplastic thyroid cancer they had seen. They said if I hadn't caught it right then, I would have died in as little as a few weeks to at most 3-6 months, depending on how long it took for the capsule to burst, and for the cancer to completely metastasize through the lymphatic system.

That was when they decided I had to have the most aggressive radiotherapy option... which I'm still suffering side effects from almost 3 years later. Because with that type of cancer, you either nuke it hard, or it kills you more than 90% of the time.

Anaplastic thyroid cancers are generally considered effectively untreatable once they invade other tissue, or if they exhibit lymphocytic metastases.

They have a very very poor survival rate... 4-7% survive five years after SUCCESSFUL treatment, because the cancer aggressively returns, even with surgery, radiation, and chemotherapy...

....Unless the tumors are encapsulated...

Thank God mine stayed encapsulated.

By God I am so lucky, and so blessed, to be alive...

... But anyway...

I now have the right acronym for my MEN subtype:

MEN2 - MMFC

Wednesday, May 27, 2015

Low Testosterone... It's not a joke, it's not hard to fix, and if you don't, it might kill you.

Since yet another friend has had this become a major health issue recently... And unfortunately, so many men still don't have good information about low testosterone, what causes it, and the impact it has...

Just a little primer for those who aren't familiar... It's a bit long, but it's the minimum to explain the problem... And it's important for all mens health.

After ages 18-24, 27, and particularly after age 35, and 45, there are substantial changes in average natural testosterone production levels, with lower shorter peaks in T levels, and longer lower troughs.

There are also changes in the bodies efficiency and effectiveness at taking up and using T in the bloodstream.

At the same time, the body tends to naturally convert more T into undesirable amounts of estrogens and other anti-androgens; as well as producing changing levels of Leutenizing Hormone, Human Growth Hormone, Follicular Simtulating Hormone, DHEA, and other hormones and , which impact general mental wellbeing, energy, focus, motivation and drive, muscle mass and tone, fat creation and retention...

...basically everything about your body, and a hell of a lot about your personality.

The higher your bodyfat is above around 14% (possibly as broad a neutral range as 12%-18%, but it appears that for most, the negative effects begin worsening at around 14%) the more testosterone production and uptake are suppressed, the less effective the body is at using the T it uptakes, and the more T is aromatized into estrogens and other anti-androgens (as well as all the other "good" hormones being reduced, and the "bad" hormones being increased).

Other illnesses such as diabetes and other insulin related issues can dramatically worsen this. As can thyroid issues, pituitary issues, excess cortisol, and other adrenal issues... Pretty much every endocrine disorder.

Also, if you have naturally higher levels of estrogens, for example if you are gynocomastic naturally (as a significant portion of men are, including me), this worsens DRAMATICALLY.

One issue that most don't understand, is that even a small thyroid deficiency... "Within normal range", but on the low end of the range, can HUGELY impact testosterone (and all of the rest of the endocrine system, your health, your energy drive and focus, and your wellbeing... "sub-clinical thyroid deficiency, should be eliminated from doctors vocabularies, because there is no such thing).

Also, what doctors regard as "low normal" levels of Testosterone, are essentially the same as 75 year old men. They are paranoid of the DEA penalizing them for over prescribing Testosterone, and are very reluctant to supplement someone unless they are persistently under 300ng/dl peak, and under 100ng/dl trough.

Testosterone levels this low, subject men to substantial negative health consequences, including dramatic muscle loss, fat gain, cardiac health problems, mental focus and acuity problems, depression (often severe), anxiety, personality changes, sexual dysfunction, sleep pattern disruption, developing or worsening other endocrine linked health problems such as diabetes, and substantially increased risks and severity of several forms of cancer.

These include a 50% or greater increase in the chance of developing aggressive prostate cancer, and several times the chance of developing male breast cancer. In general, low testosterone correlates with at least a 50% increase in risk of a lifespan reduced by at least 10%.

However, that isn't the whole story, by a long shot. One need not be nearly so severely deficient in testosterone to suffer significant negative health impact.

Testosterone levels under 700ng/dl peak, and under 300ng/dl trough, are not considered "low testosterone" by most doctors. In fact, they are considered "normal to high normal" for men over the age of 35.

However, at any age, testosterone levels persistently below 700/300, are low enough to make men depressed and anxious, lethargic and sluggish, lose muscle mass and tone, gain more fat, retain water, gain weight, have significant negative health impacts and complicate and worsen other health issues (as above), and generally feel like crap. This is aside from the common issues of loss of sex drive and desire, and intermittent or persistent sexual dysfunction.

You'll note, these effects are also those that suppress testosterone even further, driving it ever lower, in a vicious spiral.

By the time many doctors are willing to supplement, they have to work 3 or 4 times as hard, to get even above 300/100, never mind 700/300... And then, most are not willing to supplement enough, for most men to stay consistently above 300/100.

You have to insist on enough testosterone, frequently enough, to get your peaks above 700, and lasting at least a few days, and your troughs above 300, and lasting no more than a few days. You can force the issue with testing if necessary.

For most people, after the initial 3 months of supplementation (which may be at a higher level more frequently) that means injecting at least every 3 weeks, and may mean injecting every two weeks, every week, or even more often (though more than once a week after the initial period is rare).

It is also important to note, that once one has actually reached such a low level of testosterone that one is experiencing significant symptoms, or when one has bodyfat above 18% to 20% or so (and particularly above 24% to 28%); transdermal patches and gels are substantially less effective (in fact, they are essentially ineffective unless you have almost no testosterone at all) at raising available testosterone in the blood stream.

Even worse, they generally result in greater aromatization of testosterone into estrogens... Which actually suppress the action of testosterone even further.

If this is happening, raising your dosage actually makes the aromatization worse, but may show "sufficient testosterone in the bloodstream", on tests.

So you're counteracting the "sufficient" testosterone you have, and in fact making your symptoms of low testosterone and excess estrogens MUCH worse (especially the depression, muscle loss, fat gain, water retention, gynocomastia, sexual dysfunction, and increased cancer risks).

And yet, these treatments are also several times the cost of injectable T.

Unless you're skinny, with low bodyfat, and you aren't really very low on testosterone, you really need deep intramuscular injection.

Even with IM injection, many men on supplementary testosterone need aromatase inhibitors, to prevent the same issues with excess conversion to estrogens.

This is particularly true if you inject more than 1ml at 100mg/ml every 3 weeks, and almost without question if you have high bodyfat, gynocomastia, high estrogens in general, high cortisol, diabetes, or inject more than 2ml every two weeks.

Unfortunately, as with prescribing enough testosterone in the first place, many doctors are reluctant to prescribe aromatase inhibitors... Again, because they are worried about the DEA penalizing them, for prescribing "performance enhancing substances".

As far as the DEA is concerned, every man wanting to have their heatlh, sex life, drive, motivation, energy, and focus back to near what used to be... Is just another steroid abuser.

You have to advocate for your own health here. If your doctor isn't willing to do what is necessary, find a sports medicine specialist, or a mens endocrine health, or mens sexual health specialist, and they will.

You might not think it's worth the time, or the cost, or the pain of injections, or that it won't have a significant impact anyway... and it's just because you're getting older, or getting fat or... whatever justification you may have...

You're wrong.

I guarantee you, keeping your testosterone above 700/300, is worth every bit of trouble it takes to do so... and a lot more besides

Wednesday, December 03, 2014

Soylent is made out of Diabetes... DIABETES




A commenter asked what I think of Soylent, the food substitute beverage, funded through kickstarter, that is supposed to provide all the nutrition you need in three drinks a day.

I think it's an abomination before god and man.

Food is meant to be enjoyed, savored, appreciated... it isn't just caloric intake for the purpose of maintaining body temperature.

However, in all seriousness, looking at the actual nutritional information, Soylent rather closely adheres to the Food Pyramid, with appx 50% of the calories from carbs, 30% from fat, and 20% from protein.

This is the Archer Daniels Midland diet, in its purest form.

And I mean that literally... You are literally replacing your entire diet of meats, fruits, vegetables, and grains, with the products of Archer Daniels Midland (they are by far the largest supplier in the country of the primary ingredients)... processed byproducts of corn and rapeseed.

http://cdn.shopify.com/s/files/1/0421/5993/t/12/assets/files_Complete-Soylent-Nutrition-Facts-1p2.pdf

The #1 ingredient, and the largest source of calories (almost 50%), is maltodextrin, which is literally corn sugar... or rather it's a polysaccharide derived from cornstarch.

Its common use in food is as a thickening agent, to absorb oils, and as a dusting powder; either infused with a flavor (like salt and vinegar potato chips), or to prevent clumping and sticking.

It's also used to provide bulk calories in protein shakes, weightlifting supplements, carboloading supplements for runners and cyclists etc...

It has the same glycemic index as pure glucose, and it has a similar effect on insulin triggering. Diabetics are specifically warned against consuming maltodextrin in more than very small amounts, for that reason.

The lipid component is almost entirely Canola oil, which is one of the highest Omega 6 oils there is, which dramatically increase inflammatory response and arterial hardening, and may contribute to prostate cancer.

Basically, the guy formulating this stuff believed all the junk science garbage about low fat, and low saturated fat, and polyunsaturated seed oils, and high carbs being the best diet; and formulated Soylent to match that.

The original formula was somewhat better (using olive oil, and having a better carb/protein/fat balance), but it has been reformulated to be cheaper, and vegan.

He also formulated it for three meals to have 100% of the minimum RDA of those nutrients defined by the USDA to have a minimum RDA... and NOTHING else.

That's idiotic.

It's also very engineerlike... which is what the developer of Soylent is... a software engineer.

He has stated that he never wants to think about or worry about or have to cook food again, and that science should let us do this cheaper, and be healthier, than eating actual food.

He couldn't be more wrong in every way.

Never mind the aesthetic issues... and the dehumanization and mechanization of one of lifes greatest joys...

Soylent is essentially the worst diet you could possibly have, and still pretend to be "healthy". It seems almost deliberately calculated to cause diabetes and heart disease.

I honestly think that if someone who was prediabetic went on soylent for six months, they would end up insulin dependent.

Friday, October 17, 2014

Performance Enhancing? Nope... normalizing... But don't try to tell the DEA that.

There's a funny thing about my life... I'm not sure if this is comic, tragic, ironic or what...

I spent more than 10 years as a serious competitive powerlifter, football player, wrestler, and martial artist, and another few years as a just a hobbyist.

In that entire time, I never did a single "performance enhancing drug"... Never even tempted to do so.

Now I'm a broken down, fat, middle aged cripple... who the DEA looks at like I'm a drug dealer or abuser of "performance enhancing substances"... just to keep from getting fatter, more broken down, and more crippled.

I'm 8 years into the frank symptoms of chronic illness (which turned out to be a weird and rare kind of endocrine cancer, that almost killed me, and basically destroyed my endocrine system. I have been cancer free for almost 2 years now), and  I am now on damn near the exact combination of drugs that "juicers" would traditionally use for such things.

I take more testosterone every week than most steroid abusers would even think of... and I don't cycle it, I take it constantly, deep muscle injection every week.

I take an aromatase inhibitor to keep all that testosterone from converting to estrogens and testosterone antagonists (and giving me all the nasty side effects that not cycling off testosterone injections give you). We're experimenting with that one right now, but we may end up adding an estrogen/estradiol antagonist to the mix on top of the aromatase inhibitor.

By the by... those drugs are normally what they give to breast cancer and ovarian cancer patients. They actually say in the interaction warnings "do not take if you are a man"... unless of course you're a man whose body is producing too much estrogen, or converting too much testosterone into estrogens and testosterone antagonists, and blocking his ability to produce and use testosterone properly. If you're not one of those men, it dramatically increases the effect of testosterone (and other steroid hormones) on your body.

I'm on enough primary thyroid hormone to quite literally kill a normal person... in fact, not just "enough", the amount I take is several times the lethal dosage. It's still may not be enough for me. The doc just increased it today, and will probably increase it again in 6-12 weeks when we sort out the effects of the new meds. Sometimes athletes abuse thyroid hormones for weight loss, increased energy, and to boost other performance enhancing hormones naturally.

For allergies, and for inflammation pursuant to the endocrine issues, I take two different other steroidal medications (a glucocorticoid and a mineralcorticoid), which act as bronchodilators and anti-inflammatories.

To deal with some of the unfun and nasty side effects and after effects of the cancer (to improve metabolic function, energy, mental acuity etc...) I'm also taking enough creatine to put a normal person into kidney failure... For me, it actually makes my kidneys work better.

Because of the aftereffects of the cancer, the endocrine issues, and the side effects of the medications, I'm on megadoses of vitamins and minerals. I mean MEGADOSES.

Between all of those, my growth hormone production and DHEA production should be elevated through the roof... as if I was taking illegal supplementation of HGH. It's not... because my endocrine system is so screwed up.
For my edema (another lovely endocrine side effect, which can be made worse by my meds), I take more diuretics than the most abusive wrestler, gymnast, or bodybuilder. I've lost 24lbs in 24 hours, and 48lbs in 7 days just from the pills.

For musculoskeletal pain and systemic inflammation, I'm on more and stronger anti-inflammatories than any athlete rehabbing after a major injury (I take 1000mg of etodolac twice a day). I also get periodic shots of antiinflammatory medications directly into my knees.

Those let me get out of bed and walk. Without them... I just don't.

Between my normal blood chemistry, the damage the cancer did, and the side effects of medications, I've got polycythemia, and I'm a hyperclotter. I'm basically naturally blood doping.

To counter the aftereffects of the cancer and make the other meds work better (adrenal and pituitary support), I'm on enough stimulant medication (which is also a bronchodilator) to make the DEA look funny at my doctor... until he explains all of the above.

In fact, the DEA looks funny at several of the drugs I'm taking above. My doctors have had to explain to my pharmacists, and both have had to explain to the DEA... no, I'm not a drug dealer or abuser, I'm not a steroid abusing weight lifter... I'm just a guy who needs this stuff to live.

I should be taking actual pain killers too... I've got enough musculoskeletal  damage, neurological damage, and inflammation, that my baseline background pain is pretty substantial.

For those familiar with pain management, I live at about a 3-4 most days, with breakthrough to a 7 on good days, and 6 or 7 with breakthrough to 9 or 10 bad days.

That's with the meds. Without... there are no good days. There's just days I can get out of bed, and days I can't.

I simply refuse to take painkillers. They don't do a damn thing for me unless I take horse tranquilizer doses, and then they knock me out cold... or worse, leave me sami conscious and barely awake, but unable to think, or concentrate, or really actually sleep. Beside, I don't like the other side effects.

I've learned just to live with the pain, and take what pain reduction I can get with my other medications.

And by the way... this is a MASSIVE REDUCTION of the stuff I used to be taking, during the cancer. My primary care physician and my endocrinologist are both alternative and integrative medicine believers who hate drugs, and only prescribe the absolute minimum necessary.

I'm not overmedicated... if I go off of any of them, or all of them, nothing gets better and it all gets worse. We've done differential testing, going off one at a time and seeing the impact then going back on, then varying dosages... I'm definitely not overmedicated.

If anything, there are some other medications that might help me more. We're very slowly adding things in one at a time, so we can test and measure and adjust.

This isn't overmedication...

This is what happens, when your endocrine system completely loses the ability to regulate itself. It's trying to regulate through medication, what the body normally regulates naturally.

It's what I need to live, and be functional.

The worst thing is though... because of DEA actions, regulations, guidelines, and investigations... Several of my medications, that I need to live, and be productive, and actually be ME?

They're constantly short of them, or out of them entirely. Sometimes it's every pharmacy within 30 miles.

They don't stock them, they don't stock the dosages I need, or they don't stock enough to fill my scrips for a month.

I have to get hand written, signed scrips every month, I can't get refills, and I can't get more than a 30 days supply at once. If I'm caught with more than a 30 days supply, I can be charged with unlawful possession, and possession with intent to distribute.

I have to hand carry those scrips to the pharmacies, only for them to tell me that it might be a week, maybe two weeks, before they can fill the scrip; because the DEA production quota for that quarter had been exceeded, or the distributors orders were above the DEAs suspect threshold, or because they had sold out of all they could order for that month without the DEA investigating them, or because one scrip of mine was more than the DEA told that pharmacy they could keep in storage.

We won't even get into what the drugs themselves cost, or what they would cost without the regulatory and compliance burden to deal with these issues.

...And god help me if I actually took the painkillers I should be taking.

All this... because the medications that I need to live and function... are sometimes abused by other people to "enhance their performance".

... and somehow, some people still seem to think that the "drug war" is helping?

Sunday, August 31, 2014

Rash Behavior

A reader asked a question about how to deal with heat rashes.

Now, a simple rash caused by friction and moisture is pretty easy to deal with. Clean the area thoroughly with soap and water or other cleanser, scrubbing off any easily removed dead skin in the process. Then disinfect the irritated and surrounding areas with a topical sanitizer like rubbing alcohol, witch hazel etc... (Some prefer non astringent sanitizers, personally I think they work better). Dry fully, and then dust with calamine powder, monkeybutt powder, extra strength gold bond etc...

Do not use cornstarch or other organic material containing carbohydrates (and if you wear makeup, either don't wear makeup on the irritated area, or use a mineral powder based makeup). Cornstarch is sometimes recommended for babies, as being gentle on the skin, and because some babies are irritated by talcum powder. However, cornstarch can actually feed infectious fungi and bacteria living on the skin (particularly candidensis), and make any existing infection worse, or even jumpsart an infection that wouldn't otherwise have taken hold.

Also, avoid anything which will tend to clog the pores (which means only applying powders when you are thoroughly dry, and only a light dusting. Don't use pore clogging creams or deodorants, like glide on sticks or gels. Alumina based sprays and alum crystals are fine so long as they are used lightly. They shrink the pores, but don't actually clog them so long as you wash them off every 8 to 16 hours). Clogged pores combined with bacteria or fungi, can turn a simple rash into a sebacious pustule, cyst, boil, or carbuncle.

If the irritation is really bad, but not blistered, oozing, cracking, or bleeding, you may want to use a topical antiinflammatory like cortisone cream.

BUT...

Its very easy for a simple "heat rash" to turn into a bacterial or fungal skin infection... Or it may have been a bacterial or fungal rash in the first place.

This is especially true if you do a lot of hot and heavy work or exercise, live in a tropical climate, use communal pools, gym, or shower facilities, swim or spend  a lot of time in the water, or have pets or contact with livestock.

If you are obese, diabetic, have liver or kidney problems, or are immunocompromised, its both far easier to get such an infection and far more dangerous to you when you do.

With all that in mind, here's some tips from a pro at dealing with this sort of stuff (military service in hot and humid climates, living in florida, Arizona, Georgia, Texas etc... Dealing with animals, and having been a competitive athlete; I've een a hell of a lot of it. Now that I'm a fat man, and immunocompromised to boot, they are something I personally deal with at least a few times a year); on how to avoid, and how to treat, most common mild infectious skin issues.

The first thing is the basic rash advice above. Keep things clean and dry, and help them to stay that way with judicious use of powders, and wearing clothing that allows airflow made from fabrics that breathe and wont hold moisture against the skin. Bathe frequently but not so frequently you dry your skin out and strip protective oils. When you do get damp, don't then put that skin through a lot of friction, and dry it off as quickly and completely as possible.

If you see a rash coming on, or have an active rash or mild infection that doesn't appear to be serious, isn't spreading, and isn't having systemic effects inflammation in other areas, fever etc...) here's how you slow it down, reduce its impact, and treat it.

You can get prescription creams and foams etc... That will help clear things up, but you can make some for yourself that will generally be just as effective... And a lot cheaper.

First, get a big squeeze bottle from your local Walmart or analog, in the hair and beauty products section. Then get yourself three different kinds of anti dandruff shampoo in the smaller non family size bottles.

Nizoral has ketoconazole, which will help with some kinds of skin fungus and bacteria (its an anti fungal specifically but also has antibacterial and antiinflammatory properties). Denorex has both fairly strong concentrations of salicylic acid, and menthol, both of which can help with skin inflammation and are antimicrobial. Finally, head and shoulders uses selenium (usually selenium sulfide, but there are other formulations out there), which can be effective against both some fungal, and some bacterial vectors.

Feel free to buy the generics, or other brands, just make sure you get the strongest concentrations of each ketoconazole, salicylic acid, and selenium. You can also get anti-acne body washes that have high concentrations of salicylic acid, which can work.

Dump the entire bottle of Nizoral (it only comes in small bottles) into the big squeeze bottle. Then fill the rest half and half with the other two, and shake to mix thoroughly.

Shower twice a day, and after any workout, other heavy exertion, or swimming; using the mix as a body wash.

Using your hands only, thoroughly wash and scrub the inflamed areas, as well as other susceptible areas (skin folds and creases, underarms, crotch, behind the ears, around the mouth, your face, your scalp etc...), keeping the wash lather on your skin in those areas for at least two minutes.

To avoid transferring bacteria or fungi between areas, save any inflamed or infected areas for last; and wash your hands thoroughly after cleaning the inflamed area, including getting under your nails.

The very last thing before leaving the shower, clean your feet, top and soles, and between the toes, very thoroughly, using the wash.

Step out only onto a cleaned and sanitized tile floor, or a clean and dry towel NOT onto a bath mat. Use shower shoes or flip flops which you can sanitize if you need to.

Dry off thoroughly and vigorously, in order to help get rid of any dead skin which may increase the risk of irritation and infection. Avoid drying off any already inflamed areas until the end (again, to avoid spreading infection).

When you're FULLY dry, use the gold bond on the irritated areas, and any of the susceptible areas that may stay moist or get chafed.

If you have an active minor infection or any raised or rough inflammation, use  an antimicrobial treatment (if surface/subsurface fungal or bacterial infection) such as ketoconazole cream (which can be effective for both fungi and some skin infection bacteria). If you are certain it is just skin irritation and not infected, a steroidal topical antiinflammatory cream like cortisone can help reduce irritation and itching.

If you have a bacterial or fungal infection, using a steroid cream alone may make it worse.

There are tradeoffs... They suppress inflammation and itching which reduces the risk of skin cracking, minor abrasions etc... thus reducing the likelihood of infection; but if there is already an infectious bacteria or fungal spore in the irritated area, a steroid may reduce your natural ability to resist infection).  The act of applying the cream may also possibly spread the infection wider... so be careful. If you suspect bacterial or fungal infection, only use a steroid in concert with an antifungal or antibacterial (or preferably one that has both properties such as ketoconazole or miconazole).

Finally, spray or wipe down your bathtub or shower, the bathroom floor, and if you used any, your footwear; with either a bleach solution or ammonia (or other strong sanitizing agent), and clean your towels with a strong sanitizing agent (do not use them more than once without sanitizing them).

Also, wash your linens and your clothes, particularly undergarments, socks, and swimsuits; with either chlorine bleach, an oxygen bleach (like oxy clean or color safe bleach), or other strong sanitizing agent.

Many shoes and socks say they are antibacterial, antifungal, or otherwise antimicrobial... Don't believe it.

Always wear socks with any footwear that can't be sanitized and which holds moisture against the feet.

If you wear sandals, surf shoes, crocs etc... Make sure you sanitize them before you put them on after showering, and either in the morning or before bed... Or both. Spray or wipe them with dilute bleach or an oxygen bleach solution, ammonia solution, or some other strong sanitizing agent (Lysol works for example). Make sure you wipe them off well before putting your bare feet into them however, to avoid potential contact dermatitis.

If you wear socks, dust them with a sanitizing foot powder or a strong mentholated drying powder like gold bond. Do the same with the inside of your shoes if they enclose the foot fully, or they have a fabric or leather inner lining.

You're going to want to do all this even if its "just a simple rash", because often " just a simple rash" isn't, and because even if it is just a simple rash this routine will help prevent it from becoming something much worse.

Now... Here's the kicker... If its just friction irritation, inflamed moist skin, or contact dermatitis, you can stop this routine the day after the irritation subsides. If however it's a bacterial infection you need to continue for a week after the irritation clears, and if its a fungal infection, or the irritation reappears within 7 days, you need to continue the regimen for FOUR FULL WEEKS after the apparent infection or inflammation subsides. Fungal infectious vectors are extremely persistent and can survive for a long time on towels, clothing, tiles, in tubs and showers etc..

In general, to help avoid such infections, you should clean and sanitize your bathing areas (wherever wet skin may touch a surface basically) at least once a week if not more frequently

Oh and if you have a persistent rash or any kind of skin infection, even with sanitizing, anyone who shares bathing facilities with you should wash with the mix, cleaning the susceptible areas at least once a day, and take particular care to avoid infecting their feet (for example, they may want to use shower shoes as well).

If your rash doesn't respond to this regimen at all within a few days, shows bullseye or expanding ring presentation, becomes seriously inflamed or discolored; bruising or subcutaneous bleeding or blood vessel discoloration or ruptures appear; the rash spreads over a large area or breaks out in widely separated unrelated areas of the body; it exhibits blistering, cracking, bleeding, or suppurating; or you experience any systemic symptoms such as diffuse pain or inflammation, inflammation or discoloration of mucous membranes or nail beds; joint pain, fever, or any respiratory or neurological symptoms; seek medical treatment IMMEDIATELY.

Saturday, August 23, 2014

The Real Victim

Stop calling people who commit suicides "Victims of suicide", They are not.

You cannot be a victim of your own conscious choices and actions. That's not victimization, that's consequence.

Victimization is an unearned and unjustified harm imposed on you.

Victims of the disease of depression and anxiety? Ok...

Victims of a society that has no idea how to deal with mental illness, and actively worsens it? Ok...

Victims of a "mental health system" that often seems like nothing more than a funding mechanism for a series of uncontrolled trial and error experiments? Ok...

But those who chose to kill themselves are not "victims of suicide".

The victims of suicide, are those of us who are left behind to suffer the loss.

Thursday, May 22, 2014

It's getting better all the time

just about 2130 local... and I've just sat down from about 12 hours now of continuously running around and or actively "doing something" not actually at a computer or in front of a screen...

...much of it actual walking around...

These are "Good Things"tm.

First time in a long time when that was happening, outside of the context of actual travelling across the country.

Getting borderline heatstroked and dehydrated while doing it because it was 93 at 90% humidity and I didn't eat or drink enough today... not such a great thing.

Quantity of necessary and useful stuff which got done today... very high... also a very good thing.

Having an adorable 3 year old girls birthday party at the end of it all... A wonderful thing.

Having a few hours of paperwork to do on a new project now before I collapse... maybe not so great. I might do it in the morning.

My joint pain was actually pretty OK most of the day... the meds overall are working a lot better now with the better thyroid medication... If I can be this mobile tomorrow as well... that would REALLY be fantastic.

Honestly... today I have felt physically better than I have felt since 2010 or so... maybe better than that. My pain has been lower, my energy and focus higher... And I'm still recovering, and we've still got a lot of medication adjusting to work with... so hopefully things are really going to continue improving.

Friday, May 02, 2014

Sleep Debt



Sadly, if I get 4 hours a night, I'm lucky... or sick.

In fact, the last time I got more than 4 hours was when I was recovering from almost dying... so yeah.

At the moment though, I'm more sleep deprived than usual.

As I write this, 2am on a Friday morning, I've slept a grand total of about 18 hours in the last 7 days, no more than 2 hours at a time, and no more than 4 hours in any 24.

... and I've had 5 phone interviews so far this week...

I basically never sleep more than 6 hours unless I'm ill, I've physically exhausted myself, or I've gone too many days in a row with less than 4 hours. I don't recall ever having slept 6 or more hours for more than 3 days in a row.

When I was 20 though, I could do that for weeks at a time and still be OK. Not optimal, but OK.

As I've got older, my insomnia has SLIGHTLY improved... But my need for sleep has GREATLY increased.

Honestly, I can't recall an age when I didn't have trouble sleeping (my mother says I never slept much even as a baby) but it started getting bad around age 5, and by 13 I would regularly go days at a time without sleep.

Around 19 I started improving, until I stabilized in my mid 20s averaging around 4 hours a night, with "catchup" nights every few days of 6 hours or so.

From then until the cancer hit hard, I got a bit better, a few more six hour nights, a bit fewer under 4 hour nights etc...

Then the cancer and the endocrine problems made both the insomnia worse, and the need for sleep greater.

Then we had a baby.

Then he started teething and having growing pains at the same time.

That was six months ago... He hasn't stopped yet... won't for a while...

Lovely how that works sometimes huh?

The really funny thing though, is that almost everyone I know online (and most in person for that matter), almost every conversation you have ever had with me, and almost everything I've ever written...

All of it was while I was severely and chronically sleep deprived.

Yes... All of that was me with a fraction of my full energy and focus...

I'll leave it to those who have seen me while I was well rested and healthy to comment on what I'm like then, if they wish. I'm not exactly the best observer there, because I'm so used to it.

Sleep deprived, I do feel slower, less aware alert and perceptive, and less able to focus and split my attention and multi-task effectively. This of course worsens as my sleep debt builds; but until the deprivation gets REALLY bad, it only feels slightly different to me, inside my own head

Thursday, April 24, 2014

Lessons From the Well Spouse - Help! I'm Young and My Spouse Was Just Diagnosed With...

... fill in the blank. Cancer, MS, any kind of potentially deadly or debilitating condition. Doesn't matter. All the advice will be the same.

So recently a couple of friends' spouses have been diagnosed with potentially deadly or debilitating conditions. Evidently I've become the go-to person for how to deal with your spouse's medical emergency when you're young.

First, let's define "young". If you
1. are under the age of 45 or
2. have minor children or
3. if someone were to say, "well they had a good run" in reference to your spouse you'd want to punch them or look at them in disbelief or
4. if your spouse were to pass you're sufficiently young to be facing multiple decades of life without them
... you count as young in my book, at least for this exercise.

Why is it important to make a distinction? Simple. Advice for the senior set and their spouses would emotionally destroy you. It's that simple. A lot of advice for seniors in your position refers to things like  "acceptance", "quality of life" or "preparing for life without your spouse".

If you automatically thought "fuck that shit, dying isn't an option and I want to FIX this" then this is written for you.

So here's a rundown of things you need to know that nobody (other than survivors of this situation) will tell you. A lot of examples will center around cancer because all examples are from my own personal experience, but other conditions will have similar issues.

There's 2 things you need to do immediately for your own sanity.
1. Get a piece of paper, or your phone, or your computer and make 3 lists. Title these lists "People Whose Opinions Matter", "Give the Smile and Nod Treatment", and "Don't Talk to Unless Required". Later you'll be tempted to make a list of "People I Want to Physically Harm" and "Never Talk to Again" but those are extreme reactions you want to avoid.

Everyone in your life that's closer than acquaintance (and some acquaintances) will end up on one of these lists. Everyone. You'll soon find out why.

For now, populate these lists with close friends, family members, and in-laws based on how you already interact with them. There will be a lot of movement from one list to another, this will cease to shock you after a while.

2. Set up your social media so you repeat news as few times as humanly possible. If you have a blog link your blog to Facebook and Twitter. If you don't, consider making one or accept that you'll be using Facebook for news dissemination. The point is, every time something important happens make it so you can post it once and reach as many people as possible. Your goal is to make as few phone calls as possible and respond to as few questions as possible. This will help your sanity immensely.


Now on to what you should expect to happen and how the world will work from now on.
1. You will be in shock initially.
How long it takes this shock to fade will vary depending on the situation and the person. You will feel overwhelmed, despair might be your new friend, and you'll have lots of depressing thoughts. This is normal and natural.

If you express this to anyone and they tell you to "get over it" or "just accept it already", move them to the "Don't Talk to Unless Required" list. It will just save time and irritation.

2. Transition as fast as you can into the warrior mindset.
If someone tried to kill or harm your spouse right in front of you, what would you do? Stand back and wring your hands over your helplessness, or find a way to kick their ass? The faster you wrap your head around cancer being the enemy, or any other condition being the enemy, the faster you'll transition into a place of power.

Fight. Pretend you're in a war and the opposing army is attempting to invade your village and kill everyone in sight. The goal would be to take out the threat while doing as little damage to the village as possible.

Your goal is to take out the threat to your spouse's health while causing them as little harm as possible. You're not powerless, not in the least. The sooner you recognize you have the means to fight, the better. You can find a good commander in the form of a good doctor. You can find good mercenaries, er, specialists. You can build your own army.

3. Knowledge is power.
Research your enemy.

Find out what you can about the condition, how it's treated, how people who have survived managed to survive. Find out its weaknesses. Figure out how to exploit them.

As a bonus you'll understand why the doctors are making their recommendations and how the battle will proceed. This will insulate you from further shocks.

Preferably do at least a little bit of this research before spreading the news so you have a basic understanding of what's going on that you can communicate to other people.

4. Write your speech and practice it BEFORE spreading the news.
"______________ has ________. The doctors think we should do _____________. We're doing some research and figuring out how we will handle this. We don't have a firm prognosis yet, we'll let everyone know when we do. The next time we will have any information is (date)."

Yes, you need a speech. Because you need to be prepared for...

5. People will expect you to help them deal with the situation.
It's not fair, in fact it's pretty horrible. There will be some people who expect you to manage their emotions and calm their panic. Sometimes it's understandable, like your mother-in-law being in shock and not knowing what to do. Sometimes it's really really not. Don't be roped in unless you want to. By having a speech prepared you'll know what to say. Don't let them ask a ton of questions before you're ready to answer them. Just let them know when you'll know more and maybe when you're in less shock you'll be able to help them through the process. Also it will keep you from engaging when you find out that...

6. People are breathtakingly ignorant and can be utterly self-righteous about their own ignorance. You will discover this while spreading the news. After a while it will cease to shock you.

How ignorant, you ask? Well this really requires a post all its own, but people react in different ways to news. Some of it will be an opportunity to educate. "Is that like ______ cancer?", "will they lose their hair?", "is that what Michael J Fox has?" are opportunities to educate or let them get their own education. If you want to spend the time educating them, do so. If not, give them the correct spelling and send them on their way. You can decide whether they're on the "opinions matter" list or "smile and nod" list later.

That's benign ignorance though. Benign ignorance is much preferable to blamers and fixers.

Some examples of blamers include "well if they'd just been on the right diet" or "it's all the chemicals we use now" or "what did they do to deserve this?". Yes, people will say this stuff right to your face in your hour of need. The need to find something to blame to make themselves feel better. Doesn't matter if they're right or not, blamers need to be put on the "don't talk unless required" list.

Less horrible but pretty horrible are the fixers. "If you take this supplement it will go away", "if you smoke enough pot you'll be cancer free", "if you pray enough you'll be cured." Occasionally they're somewhat correct. Most of the time they're breathtakingly ignorant in a harmful way. Assess their intentions (honestly trying to help or promoting pet cause?), tell them you'll look into it, and place them on the "smile and nod" list or "don't talk to" list accordingly.

7. People are also breathtakingly insensitive and clueless.
Sometimes they just don't know how to react. That's fair. However far too much of the time it's clear they don't even hear the words they're saying.

"Oh I'm so sorry your husband has cancer. My dog had cancer so I understand what you're going through."
"My aunt had that cancer. She died."
"My nephew's wife died from cancer. He killed himself later."

Refrain from killing them if you can. Assess their intentions, assign to lists accordingly.

NOTE: I told you there would be people you'd want to harm. Also, by distributing news via Facebook or another group medium you can keep how much you deal with these people to a minimum. Hopefully you'll have a few relatives or friends on your friends list who can point out how stupid they're being and model better responses. Please let them.

8. All medical facilities are not equal.
Some really are better than others, have better doctors on call, have nicer nurses, have better specialists and equipment. If you can get to a medical center or hospital that specializes in your condition, do so. The choice of where you get treated can be the difference between life and death.

9. Doctors are neither omniscient nor universally competent.
We spent 5 years trying to find out what was wrong with Chris. When we found out what was the wrong the first surgeon wouldn't operate until he lost enough weight. She wanted him to get a gastric bypass first.

If we'd gotten the gastric bypass Chris would be dead. He'd have no way to "fix" the medication issues he's currently having.

After the second surgeon removed the tumor we found out Chris would have been dead within a couple of months.

We'd gone through 8 highly respected doctors and 1 highly respected surgeon. The people who actually were responsible for saving Chris were 1 physician's assistant, a stubborn endocrinologist, and a cocky surgeon.

Always get a second opinion. Always keep pushing. Follow your instincts. Don't believe that the doctor is necessarily correct just because they're a doctor. The field of medicine is far too large to be understood by any single person.

Keep going until you find a doc and specialists who 1. you trust and 2. treat you like an individual, not a bunch of statistics. Good doctors research what's been done before and know what *usually* happens in 90% of cases. Excellent doctors understand it's possible they're dealing with the other 10%.

The best doctors will appreciate it when you bring them what you found out through your research and will look at the information themselves to see whether or not it applies. Which brings me to...

10. Rules? What rules?
Some nurses will hate me for saying this but...

You're the spouse. Sometimes the rules don't apply to you.

Whenever you're given paperwork, particularly HIPAA paperwork, make sure you're listed as someone who can receive medical info. Go to every appointment you can. Take notes. Be extremely knowledgeable. The docs will respond to you accordingly and will respect you. Where they wouldn't trust most spouses with info, they'll trust you.

When you get to the hospital, be calm. Be collected. Be knowledgeable. Take care of your spouse. Ask the nurses questions about when you should call for help and what to watch out for.

Do this, and you'll find out visiting hours no longer apply to you and they'll move mountains to make sure you can stay with your spouse. Make it clear you'll make life easier, not harder, and overworked nurses will happily bend the rules for you. Cots and extra pillows will suddenly show up and food will be found for you in the middle of the night.

Become a pain in their ass or cause your spouse distress and hospital "policies" will spring up from nowhere.

11. You're now part of the "tribe", and the tribe has the nicest people you'll ever meet.
All that faith in humanity you lost? It's coming back. Once you find people who have gone through what you're going through, or even something similar, you'll find kinship you won't find anywhere else. When we went to have the genetic screening while I was pregnant, the doctor who went over the results with us found out Chris had cancer. Turned out she was in the middle of treatment for colon cancer. We talked for hours about how no one else "got it".

People who have been through cancer know what it's like. They'll help people who are new to dealing with their conditions. The spouses will help you. It's a big support network you never knew existed.

When you find other people who "get it", hold them close. You'll need them. Because...

12. It's never over.
The declaration of remission is just that. Remission. Cancer can always come back in other ways. What you did to survive might try to kill you, just like it tried to kill Chris. The aftereffects last for the rest of your life.

Even if your spouse is "cured" of something you'll spend the rest of your life questioning every symptom and knowing how close you came to permanent loss. You'll never be the same. You'll keep looking for the next invading army.

So don't treat it like a "temporary" crisis. It's not. It will sap your strength for years to come. So take care of yourself, live as much as you can in spite of what's going on. Adapt to your new circumstances. Life goes on.

Mel



Wednesday, April 23, 2014

Sustainable and Improving

So, for those who don't know... My wife has been posting a bunch of stuff on facebook about thyroid, pituitary and adrenal stuff, medications, diet, how I could have died etc...

Here's why:

A few weeks ago, after months of getting sicker and sicker without realizing that was what was going on (we thought it was just cumulative  exhaustion and burnout from overwork, overstress, traveling,  not sleeping for months, and having had severe pneumonia for six weeks)...

...I spent about a week and a half going in and out of a shallow coma.

It turns out this was because the medications which are supposed to keep my hormones regulated post endocrine cancer, were not working at all (and were in fact having adverse effects and interactions).

I became acutely and critically deficient in several substances necessary to regulate my metabolism and brain function, and my body basically started to shut itself down for 18 to 20 hours at a time.

Because I was on these medications... Very large doses of them in fact.. The cause of the problem, and thus the treatment, were unclear. It seemed impossible that the cause of the problem could be what we eventually found it to be.

I came very close to going into systemic shock, a deeper coma, possibly even brain damage or death.

The thing is, with endocrine issues, sometimes, for some people, the medications that work for everyone else, don't work for them...

Worse, the tests don't necessarily show that the meds aren't working until you reach a critical state.

This is complicated in that endocrine illnesses often present similarly to other problems, or present symptoms which mask real problems, as was happening here.

In fact, in my condition, the primary medication I was taking such a high dosage of, was actually making the problem worse.

Eventually, symptomology made it clear that my medications could not be working, no matter the dosage or what the tests might say.

We have temporarily switched to another primary medication, which has helped immensely. I am no longer close to a coma, and after an initial big improvement, I am recovering gradually.

However, this other medication is very difficult to dose consistently, and has some unpleasant side effects (which is why it is largely no longer used).

Essentially, I roller coaster from moderately too little, to moderately too much of the hormones I need, plus a big dose of stuff I don't want or need (and the somewhat to severely unpleasant side effects thereof), just to ensure that I have at least the minimum amount no matter what, while not having far too much (which can kill me just as easy as not having enough).

There are other options which we will be investigating as we are able to do so, but right now we have no medical insurance and can't afford the extensive testing necessary to find the right drugs and the right dosages; nor can we afford those drugs (they are much more expensive than those I was taking, or have now switched to).

For now... I'm OK but not great... I'm in a sustainable and improving, not deteriorating state. And that's better than I have been for quite some time.

Thursday, October 17, 2013

I have had this conversation

CHUCK LORRE PRODUCTIONS, #422
Doctor: 
Your adrenals are under-functioning, your thyroid is flat-lining, your pituitary is DOA, your testosterone levels are below those of a twelve year-old girl, and your body is sadly lacking in almost all the critical enzymes that make life possible. 
Me: 
Give it to me straight, Doc. Don't pussyfoot.
My doc said pretty much the same thing to me.


So, to Chuck Lorre I say... enjoy the music:


Monday, September 30, 2013

Feeling a bit waterlogged...

So, I'd been feeling a bit puffy lately... inflammation and swelling high, edema high etc...

Deciding that more accurate information was important, I stepped on an accurate scale; something I hadn't done in about a few weeks... 

...And lo and behold, I'm 45lbs heavier than last time I checked.

I've been eating less, and particularly eating snacks and fast food etc... less (the last couple months in Idaho we ended up eating a fair bit of "convenience" food, because of the baby), so I knew it was all water retention.

I haven't been taking my diuretics for months, because they were screwing around with other things; causing vitamin and mineral deficiencies in particular; and because the edema had been much better since the surgery and radiation. 

Unfortunately, while my edema isn't nearly as bad as before the surgery... it's by no means gone...

So, for the first time in months, I took a dose of my diuretics today.

2 hours later I had already lost 10 lbs...

So yeah... back on the diuretics it is for me...


Friday, September 27, 2013

The REAL "real" reason for ridiculous medical care costs in this country

In the past few weeks, this video:



Explaining some of the reason Americas health care costs are so high, has become very popular... And it's got some good points to be sure; in fact, it's one of the first and best relatively plain language explanations I've seen outside of Libertarian circles, of the basic economics that drive healthcare pricing in America.

Unfortunately, many seem to take the message out of this that "Oh well, it's just because the government doesn't regulate how much things cost, and the health care companies are gouging us for evil evil profit, we MUST get the government to take over" etc... etc...

Today, a friend linked this NYT article on colonoscopies as a good example of how American health care pricing is out of whack... And again, it raises some good points, but again misses the point completely in some ways... Perhaps intentionally.

Watch the video and read the article for context before you read on...

I say "perhaps intentionally", because although the article (and the video) both make clear that certain procedures, medications etc... are priced FAR higher in the U.S. than elsewhere, they didn't really get into why the "price" invoiced is so ridiculously high.

They did touch a bit on a few areas, but both simply seemed to suggest that it is because the government doesn't regulate the prices and therefore the healthcare companies gouge Americans for huge profits just because they can.

Knowing me... One might have certain suspicions as to my thoughts on that concept...

Although, as the article suggests, it sometimes IS because of gouging, or because of unnecessary profit motivated procedures (particularly the overprescription of marginally effective, marginally necessary medications; and the over use of preventative or diagnostic procedures with marginal value), most of the time our ridiculous health care costs (and they absolutely are ridiculous) are NOT the result of gouging for profits.

Both the article and video highlighted the market failures (and yes, without doubt healthcare is a failed market in this country), but other than saying "doctors charge too much and do unnecessary high profit things", and "it's because the government doesn't set the prices lower", and that the market is distorted and largely failed... again, they don't really explain why the prices are what they are.

In addition to the points raised in those pieces, there are three major factors:


  1. The price listed or invoiced is nowhere near the price actually paid. Often the total the insurance company (or medicare/medicaid/state health care) pays is up to 80% less than that invoiced.

    This comes from negotiation, pricing arrangements, discounting plans.... and sometimes just pure fiat. The doctors submit their invoices, and the payers send back how much they are willing to pay, and if you don't like it, too bad, you agreed to take this insurance. The only recourse is to drop that insurance and those patients.
  2. The healthcare providers, device makers, drug makers etc... inflate the official list prices, so that those who do pay, cover the costs for those who don't, or who pay much less.

    U.S healthcare consumers subsidize the cost of those on medicare, and the uninsured (either paid for through emergency care which cannot be turned down in this country, or through state healthcare programs); as well as healthcare consumers in other countries where their governments regulate far lower prices.

    Rather than take a loss, or lower profit, because of all of those who don't pay, or pay less, they jack up the price on U.S. consumers.

    Because we as individuals don't directly pay for the majority of our healthcare expenses (typically we only pay 20% of our insurance premiums, our copays typically max out at 20% of the invoiced cost), and those costs are kept opaque from us, we can't shop around, or even demand a better price... if we even know the price at all, which, most often, we don't.
  3. In the U.S. up to 80% of every "healthcare dollar" isn't spent on healthcare, it's spent on lawyers, taxes, administration, and insurance.

    For example, just on the care delivery side of our healthcare industry today (meaning doctors, nurses, hospitals, and the companies that "manage care", do their billing and paperwork etc...), there are actually EIGHT people working in administrative roles, for every person actually delivering healthcare to the patient.

    Simply for billing alone, there's generally one person working on billing, insurance, medicare, paperwork etc... for every two doctors.

    For an even more costly example, the article highlighted the increased costs of surgical centers over doctors offices for outpatient procedures, suggesting the widespread use of outpatient surgical centers was solely so that doctors could gouge patients.

    What they didn't mention is that malpractice insurance for doctors who do inpatient surgery in their offices is anywhere from 2-8 times as expensive (if they can even get coverage) as for doctors who do not. Whereas in the surgical center, the additional malpractice insurance burden is covered by the center itself, with the individual doctor bearing far less of the cost.

    These are not trivial insurance costs... a single doctors insurance premiums can go over $300,000 a year in some specialties and some markets. Anesthesiologists and Ob/Gyns in particular pay among the highest insurance premiums.

    This is why there is an nationwide shortage of OB/GYN's. In some markets, there aren't ANY independent Ob/Gyn's who actually deliver babies. In Las Vegas anymore for example; they simply cannot get malpractice insurance in that market anymore, and have to be covered under a hospitals or group practices group/umbrella policies.

    And THAT isn't just insurance companies gouging doctors... Industrywide, from 2004 to 2009, payouts in settlements and lawsuits against several different categories of doctor (including OB/GYN) exceeded premiums.

    And THAT isn't because doctors are making more mistakes, or worse ones; in fact the reverse is true. Infant death particularly during the final few weeks before delivery and first few weeks after, is vanishingly rare in this country among otherwise healthy babies; and is becoming more so every day.

    There are two issues there.

    The first is that we are saving more and more pregnancies and more and more babies, that in other countries, or in the past, would not have been saved, gone to term, or survived delivery. This results in far more high risk pregnancies and high risk infants in this country than in other countries (and by the way, that's also why our infant mortality statistics are worse than many european countries. They don't count marginal viability pregnancies and deliveries as infant mortality in their statistics). The fact is, the best doctors in the world, with the best gear, drugs, and techniques... sometimes fail to save those who are at high risk, without any error or fault of their own.

    Which feeds into the second issue...

    Which is the jackpot court system in this country. Presented with a tragic story of a high risk infant and suffering angry parents, juries largely don't give a damn if there was malpractice or not. They figure hell, the doctors are rich and have insurance, they can afford it; and so they give grieving families, or families facing a huge burden of care for their disabled children, massive awards (many of which end up being dramatically reduced by judges).

    Meanwhile, actual malpractice, if it isn't sexy enough to get a big trial lawyer involved, is nearly impossible to show

So yes, the U.S. healthcare market has failed, badly... but it's not because markets are bad, or healthcare is some weird special beast. It's because the market is horribly distorted and opaque, often deliberately so.

If the market were allowed to function with far less distortion and forced to function with transparency, it would be an entirely different situation.

I don't know about you... but my personal experience... and for that matter their track record in healthcare... Suggests to me that counting on the government to fix ANY market in general, and the healthcare market in particular, is a SPECTACULARLY bad idea.

... But maybe this time will be different... because... umm... unicorns and rainbows and Barack Obama?

Thursday, March 28, 2013

Babys coming

Mels water broke 2 hours ago. As of right now shes 3cm, contractions are under 3 minutes. He's coming soon. 3 weeks early.

Update at 5pm: 5 hours in, she's a bit under 5, contractions have been consistent at 2 minutes for a couple hours. She's getting her epidural now. At first it looked like we might just have a real short labor, but things have slowed down a bit. I'll keep updating through the day.

Update at 6pm: Epidural is working well, she's relaxed and fine, babys vitals look good, we're hoping the epidural helps her dilate and move along.

Mostly happy Mel:


The view from Mels bed out onto the creek, the train track, and the lake and mountains beyond (this hospital is really located in a great spot).


Update at 1910: Baby's coming soon. Contractions under 90 seconds, 9-10cm dilation. A few minutes more, less than an hour certainly

Update 1935: Baby Boy Byrne is HERE! go to the post for pics etc...

Tuesday, March 19, 2013

Well... this has been sucking...

So... I have barely written anything in a couple months.

Simple reason why.

I have been very sick, for quite some time now.

And I'm not talking about in the head.

I've had multiple persistent, antibiotic resistant and or viral respiratory infections, one after another, for something like two months now.

I got the flu in january, which was very nasty and knocked me out for two weeks.  Then while I was still recovering from the flu,  I got a simple cold (viral), which moved on to a nasty sinus infection (bacterial), which then drained into my lungs and became an upper respiratory infection (both. primary and secondary), which then moved lower in my lungs and became bronchitis...

Every time I start to get better, I get reinfected, or get another subsidiary infection etc... because my immune system, screwed up by the endocrine cancer, isn't recovering fast enough.

This past weekend I was feeling good enough that I went out with friends on Friday... and two people in the large group of friends we were hanging out with were recovering from strep.

In theory, they were beyond the high percentage infectious period (more than 48 hours after presentation, with more than 3 days on antibiotics)... in theory.

So, a couple friends came back to the house for the weekend... and by Sunday we were ALL very sick.

VERY sick.

By Sunday afternoon, my voice was gone completely. I can't actually speak right now, just kinda croak.

One friend went to the docs yesterday, and Mel went this afternoon. Both were told at the time that it wasn't strep... But our friends cultures came back late this afternoon, and she definitely has strep.

So, we're going to see if Mel gets worse tomorrow, if she does she goes back in to the docs.

Meanwhile, I've been completely useless since... January?

I've managed... literally a few days... of usefulness in that time, through heavy use of medication. Otherwise... pretty much non functional.

Yes, I know, it's bad. No, there's nothing else wrong with me... or rather nothing else we didn't know about... This is what happens when you have endocrine cancer, and then high dose radiation treatment. Your immune system is screwed for months... sometimes years...

Sucks.