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


Sunday, May 31, 2020

Travelling Back From Out Of The Fog



A few years ago, I decided to deprioritize the blog... for several reasons.

First, my life was all cancer all the time, and I really just didn't feel like I was writing much worth reading that wasn't about the cancer and the impact it had on our life.

Second, and more relevant to the current state of social media, is that in large part, people stopped commenting on blogs... They would comment on twitter, or facebook, or reddit, or wherever they found the post, or had the post shared with them etc... but they wouldn't actually comment on the blog itself.

... The discussion moved away from the platform... and that killed the entire point of blogs, which was to actively engage with readers and commenters. Otherwise, it's just a web site... or worse, a livejournal...

So, I moved my primary social media activity and most of my new writing, from this blog, to other social media... Mostly facebook, with a little bit of twitter, and eventually a little bit of MeWe.

... I still occasionally posted, as my loyal readers hopefully noted... but often I went months at a time between blog posts.

However, I am generally a long form writer... I've got several blog posts exceeding 10,000 words, and at least a couple exceeding 20,000 words... and across the last 15 years that Ive been writing in this space, I've managed to write a couple of series of posts exceeding 100,000 words, which is entire book length.

... And Facebook isn't exactly well suited to long form writing... though I've still managed to write a fair few long form posts anyway.

Well... For quite some time now, a lot of my readers and friends have asked me to start posting my longer FB posts back to my blog... at the very least because FB makes it extremely difficult to save and find posts later, and it can be difficult to link to or excerpt a post when you want to etc...

As it happens, I had already decided to do so... and few days ago I mentioned I was already in the process of doing it... But, you have been following both FaceBook AND the blog all along, you may have noted I hadn't done so yet (or at least not until a few minutes ago).

I haven't forgotten about doing so... I'm just in the process of collecting, cleaning up and re-writing in blog format, and then scheduling those posts to come out one or two at a time, so i'm not flooding the blog with tens of thousands of words all at once.

... So... why now?

Well, a few reasons... For one thing, I've noted that some people are starting to engage with long form writing and blogs again. Also, my life, while not exactly great at the moment, is at least no longer all cancer all the time, so I feel like I can write more about what I actually want to write about.

... But there WAS something specific that prompted me to act on the notions that have been stewing for months, where I was hesitating before now...

For the last 10 years, I have suffered from what I, and other cancer warriors call "cancer brain"... I have had long and severe bouts of  overwhelming fatigue, lack of clarity and focus, writers block, and even readers block, where I literally can't concentrate or focus enough to read, sometimes for months at a time. I have spent days, weeks, months at a time, going in and out of what those of us who suffer from it call "brain fog"... where I can have seemingly normal function, even be reasonably intelligent and clever and seem to write reasonably well... but it's not me... it doesn't feel right, it doesn't... work... It's not good work and good writing, or at least not good enough. I try to grasp ideas and work with them, and they just slip away. I try to write the proper words to say what I really mean, in the way I want to say it... and I just can't.

... But there have been moments when I came out of the fog, and WAS able to do good work... even some things I thing are great. Among the best I've written... They're not common, but they have been happening more and more, as I recover more and more.

A few days ago, I managed to write about 20,000 words, on several different subjects, in just a few hours... I think maybe some pretty good ones, as I have strung them together.

My brain started working close to how it should for a few hours... Waking up after a good quality sleep with less pain and no reflux (for the first time in days) was undoubtedly a big help there... but sometimes, in the midst of the fog, I hit a clear patch, and can think, and write, and be productive, at least a bit like I used to.... And hopefully will again.

And in that clear patch,  I wrote wrote couple of the best things I've written in a good long while, as well as a couple of linked posts that are...

...Let's call them interesting seeds, that will hopefully grow from possibilities in peoples minds, to interesting realities in peoples lives.

So, I decided that I would stop letting the perfect be the enemy of the good, and at the very least, post here, whatever I may write that I think is good... or that may plant interesting seeds in peoples minds...

...If I can achieve that... it's something worthwhile... And you can't hope for much better than that.

Wednesday, February 26, 2020

Strength, Recovery, and Gratitude

This started out as a light and fun post in my head... but as I started writing... it got kinda long, and serious... and then it got very long and very personal and very serious... but I have to get this out, and y'all are my friends and the people I love, and who love me.. so... if you're interested... here it is... 

...I warned you...

Now that I'm back on a full dose of thyroid meds... after three months of taking the minimum dose to keep me from going myxedemic, before I was able to get a new prescription... and given the recovery I've made over the last 18 months... I've been feeling like it was time to start working out again.

I still need to get back on my testosterone, modafanil and adderall, to be able to really be OK mentally and physically... and particularly the testosterone to really build any muscle back up very much for that matter (I need to raise the money to get a local doctor, and blood work, and then pay for the scrips)... but I'm recovered enough that I feel like I can get started back again at least. 

I don't have a functioning vehicle (I have a motorcycle, but it needs a new clutch and I don't have the cash for it) and I can't walk more than 50 yards, so I can't get to a gym regularly. We don't have any free weights here, and I don't have the money to get any... 

...But...

...We DO have a Bowflex Ultimate 2, with all the attachments, that has just been sitting, broken down for a few years and gathering dust... 

Now, I would much rather have free weights... and eventually I will again...  But a bowflex is actually great for circuit training, and honestly, that's what I need to be doing right now. Light weights, high reps, get into the aerobic cardio heart rate zone, and not strain my back too badly while I rebuild my supporting musculature.

So, my project for the day, is to clean up and get this machine working again, and then do my first real workout that wasn't physical therapy, since 2012 when I had my first round of cancer surgery and radiation. 

Christ... It really is almost 8 years since I've been able to work out at all... I have a hard time with that honestly... 

I was still recovering from the first round of cancer and radiation... and moving across the country FIVE times in three years... from 2012 until 2015. Then we found the next round of cancer in late 2015,  and then the next round after that and my spinal injury in late 2016...  and I was literally bedridden from late 2015 to late 2018... and now its 18 months of recovery from my last round of cancer surgery...

...and finally, I can start working out again....

I don't really have the words to describe what that means to me. 

I started in Jui-Jitsu when I was five, wrestling when I was 12, football and kenjutsu, and serious weight lifting when I was 13. Then power lifting when I was 14, and finally the SCA, and fencing (I fenced saber in college) and what they now call HEMA (whacking each other with medieval through rennaisance swords) when I was 16. 

From age 13 to age 30 I worked out almost every day... I was a serious competitive powerlifter, a football player, an airman and officer, a fencer and swordsman, a wrestler and juijiteiro... and I was strong, always... Even after I busted my knees up bad, other than running, I could always make my body do what I needed it to do, always lift that weight, always move that thing that nobody else could move, always carry that pack that was too heavy for everyone else... 

Then I started getting sick... And gaining weight... In less than 3 years, I gained over 200 pounds... But still, from  30 to 35 I worked out whenever I wasn't too sick... Which was less and less as I got worse and worse... and now after 8 years of being too damn sick, too broken down, to crippled up, to even work out at all...

... I can finally start again... 

I'm sorry that I'm rambling and repeating myself...It's just... Kind of a very big deal for me.

Up until my spinal injury... Being the strongest guy... or at least one of them... in almost any room, was a big part of my identity, and my sense of self. Not in a meathead ass kind of way... just... Knowing that whatever it was, I could handle it...  

Even when I was sick I was still the guy who hauled a 350 pound couch onto my back and took it down two flights of stairs and out to the truck.. I was still the guy who picked a 480lb lathe off the truck lift gate, and hauled it into my shop, when the truck driver  couldn't get close enough to the concrete slab, and would have had to unload it into the gravel. I was still the guy who was stupid enough to take a situps challenge, and do 200 situps in less than ten minutes  just to prove I still could, when somebody assumed I was just some fatass, and I just NEEDED to prove them wrong...

Immature? Petty? Stupid? Yeah,maybe a little... But you have to understand just how much being seriously chronically ill strips away the things that make you feel like yourself. And how hard you feel like you have to hold on to them. How not being able to walk without a walker for two years breaks down your self image. How not being able to get to the damn bathroom and having to use a commode for 18 months strips away so much of what you thought you were... How not even being able to get put of bed, and  being comoletely dependent on others for... everything... How that breaks you down.

...Through it all, I have always kept in my head and my heart... that core of me... the man who absolutely cannot be defeated... the man who has fought, and been broken down and damn near destroyed... but never defeated. The man who was too exhausted to keep fighting, but still SURVIVED when I couldnt fight anymore... The man who lived, when it was all I could do to live... when dying was so damn easy, and living was impossibly hard... 

When my body was useless and dying, and I couldn't even complete the basic tasks of keeping myself alive without help...

... At my core, I always held that... I don't know what to call it... hope, knowledge, conviction... that WILL... that CERTAINTY... That eventually, I would get back to being ME again. I would be able to think clearly again. That I would be able to write again. That I would be able to work again...  and that eventually  I would be STRONG again...

Over the last 18 months... since leaving a literally toxic environment that was killing me, and keeping me from recovering... I have lost over 100 pounds (I still have another 100 plus pounds to lose, but I've done pretty damn good so far). I have recovered more of the muscle tissue destroyed by my spinal injury and the resulting rhabdomyolysis and atrophy from almost three years of being bedridden, than my doctors and I thought possible. I have recovered enough muscle tone, and enough of my supporting musculature, that I can walk 50 yards without a walker or a cane on a good day (on a bad day I can't really walk at all, but there are more good days than bad now) which my doctors were dead certain would never happen again... 

They told me that I would probably never walk more than a few feet without assistance  again. They told me I would never be able to work out or lift heavy again. They told me I would never be STRONG again... Not like I was anyway...

A few days ago, I did 50 crunches... just to see if I could
It HURT... but I could do it. I could barely move the next day... But I still did it. 

I have recovered more than those who didn't really believe in me... even those who I thought loved me and supported me... ever thought I would.

I have recovered more than even I thought I ever would, or could... 

... And today... I'm going to use my strength again, and start working to build it back up again... I'm going to be STRONG again... I'm going to be ME again. 

And there is no way I can find the words to say what that means to me. 

... But I'm glad I tried.. because my friends, and the people who love me and care about me and support me... Maybe they need to hear this, as much as I need to say it.

Thank you.

Thank you all for keeping me alive, and keeping me going, and keeping me fighting through all of this... For giving me something to fight for when everything was ripped away from me... when those closest and most important to me abandoned me... when would have been expected to give up, to stop fighting...  you all kept me going. 

Thank you...

Time to get to work.

Saturday, March 09, 2019

"Cancer Free" Doesn't Actually Mean Cancer Free...

Something many people don't seem to understand about cancer in general, and my specific kind of cancer in particular...

When you have surgery to remove cancerous lymph nodes... it doesn't CURE the cancer. You still have cancer, it's just in remission, because you don't have enough actively malignant cancer cells to detect a large mass.

Even when they say you are "cancer free", it doesn't actually mean you're cancer free, it just means there are no detectable large masses of cancerous tissue.

... And you PRAY most fervently, that there are no large undetected masses... because there easily can be... and that you have a long while before the cancer grows enough again to be a threat to your life.

You have to understand... once cancer is in your lymphatic system, small clumps of cancer cells circulate through your entire body. You just have to hope and pray they don't implant and grow... or at least they won't for as long a time as possible...

... Because, barring some kind of miracle, lymphocytic cancer ALWAYS comes back... it's just a question of how long until it does.

My cancer is currently in remission... at least I hope so, because I haven't had a post surgical scan, or my six month scan. So there very well could be more large malignant masses growing in me right now... I don't have the money to get the tests necessary to know whether I do or not.

...But the odds are about 75% that it will be back within two years. About 85% within 5. About 95% within 10, and about 99.6% within 15.

... And my own personal history proves that out...

I had my first cancer surgery in July 2012.

We detected the lymphocytic metastasis in November of 2015.. three years... and had surgery in March of 2016, when they got "all the cancer"... and at they time, they absolutely thought they had.

Six months later, in October of 2016, I had approximately twice as many cancerous nodes as they had taken out in March... and at the time, it looked liked they had got all the cancer... again...

21 months after that, I had approximately double THAT amount of cancerous lymph nods and infiltrated tissue removed.

It's been a little less than 8 months... There's a very good chance I have more cancer right now... but I won't know until I can raise enough money... or work enough... to get the tests I need.

So... yeah... That...

Monday, March 21, 2016

Who "Spoons" A Fuck?

"I'm all out of spoons"...

Yaknow... if it works for you, great... but I hate the spoon thing...

Yes, the concept makes sense once you explain it... but using spoons for it is just arbitrary and silly... there's no logical or metaphorical connection. It has to be explained to someone, rather then being intuitively understood, or there being a clear chain of reasoning to get there themselves.

I prefer it this way...

On a given day, I have a variable number of fucks to give.

Some days I have a lot of fucks to give. Some days not many at all... some days in between.

I don't know how many fucks I will have to give on any given day.

Sometimes I can estimate how many fucks I have to give that day, while I'm giving them, and I can manage them reasonably well.

Sometimes, I run out of fucks to give right in the middle of something, with no warning.

It takes a variable number of fucks per hour, simply to stay alive.

Some days... some hours even... that number is lower... Some much higher.

It takes a variable number of fucks to deal with pain, and stress...

...again, some days... or hours... relatively low, some days quite high.

Some days, I run out of fucks there... or even before... and there is more pain and stress that day, than I have fucks to give...

...Those are very bad days.

It takes another variable number of fucks to deal with whatever shit I absolutely must fucking deal with that day.

Some days I run out of fucks to give before I can deal with that shit.... Some days I don't.

Mostly I get around that by minimizing the stuff I absolutely MUST do, and either stack it all up for one day I can expend exceptional effort on, burning extra fucks on willpower and drugs...and then recover for several days... Or I try to spread them out and be flexible... so that I can get shit done when I have the spare fucks to give.

... a lot of times I have to have someone else give those fucks for me, or it just won't get done in time... and that really fucks me up...

Whatever fucks I may have left to expend at that point, go to whatever else there may be in this world.

First, to my wife, kids, family, friends... the people I love and care about, and who care about me...

They get all the fucks I can give them... or they can stand from me...

Then, to "leisure activities"...

...Which, since I'm way more than broke (right now I can't even pay my medical bills, keep the lights on, keep a roof over our head, or keep transportation), without a vehicle, very sick, and in a lot of pain...

... Mostly consists of reading, watching videos, and "social media"... and frankly, my focus and attention for reading has been horrible for a couple months...

... honestly, right now I can barely get through a web article and remember it at the end some days...

...Worst thing, is that for a couple months now, I can't seem to just sit and read a book to save my life (one of my favorite things in the world, and one of the very few things that relaxes me at all... and something where when Im healthy I can and will gladly read several books a day). I start reading, and I lose focus, and read the same page over and over and forget what I was reading...

... Really,.. that one... that one really fucks with me quite badly... I've been here before, and I really don't want to live through fucking "Flowers for Algernon" again... It's... Not worth it for me... and it's fucking hard to do it even for my wife and kids...

...but anyway, those fucks go to keeping my mind occupied, and amused, and distracted from the pain and the stress and everything else...

Finally, very last of all, are whatever the fucks I may have left to give for everything else...

Among the "everything else", that I have had so few fucks to give about recently...

...Taking the time, effort and energy, to bother deeply explaining things to, persuading, or arguing with other people, who don't bother making even the most basic effort at listening, learning, or thinking.

Sometimes I will still make an effort...

If those other people are worth bothering with... great... Makes me feel good, and if I help somebody learn something new, or help myself learn something, even if it's how to better present the information... spectacular... It may even replenish some of fucks to give... which is great. It's why I ever bother doing any of it at all.

Or if it amuses me... that's always worth doing...

But most of the time... it's just not worth giving a fuck...

Shit, when I really want to, I can turn people around 180, and make them think it was their own damn idea...

... But that takes a hell of a lot of giveafuck...

... and unfortunately... about most things, for most people...

....I've just run out of fucks to give.

So, unless they're someone I like or care about... or I think they may be worth it... Or I think that their particular brand of stupidity, or leaving them ignorant, would be harmful to people or things I care about... or even harmful to the world as a whole...

...Or if they annoy me enough I can't let it go...

... Or if it would amuse me to fuck with them...

...Most of the time, they're absolutely not worth wasting a fuck on.

I just don't have enough of them right now, that I can afford to waste them.

Fuck cancer... Fuck it up the ass, sideways, with a rusty chainsaw...

Saturday, January 02, 2016

Lessons From the Well Spouse - The Types Of People You Run Into While Treating Cancer

For the longest time I've held on to the draft of the post you're reading now and since we're starting Chris Has Cancer Round 2, I thought maybe it was time to finish the post. True to form we've seen all of these types again, plus some new types that either we didn't have in our lives at the time or have sprung up since.

The Mostly Benign


The Know-It-All Who Knows Nothing: this person is the instant expert on your condition, despite not actually knowing anything about it. Easily identified by their blanket statements and complete inability to do any medical research, they will gladly tell you how "natural foods will cure any cancer" or "you should try *insert current medical fad here*". Most of their medical knowledge will be gleaned from Facebook. Assess their intentions (most of them are actually trying to help) and if you need to use to magic words, "thanks, I will totally look into that".

The Misinformed Overgeneralizer - this person heard "cancer" and has no clue that not only are there many, many different types of cancer but also that the treatments are highly specialized and not universal. Usually their first comment is along the lines of "omg are you gonna lose your hair?" Generally considered benign, they are sometimes worth educating or at least worth throwing a few search terms to set them on the right path.

The Person Who Can't Use Google - sometimes a variant of the Misinformed Overgeneralizer, they are willing to admit their ignorance. However, they will expect *you* to explain everything to them. This person's opinion automatically does not matter, and depending on how much you give a shit about them you can spend the time to explain or you can tell them to Google it for themselves.

The Math-Impaired - this person doesn't understand odds, survival rates, or any statistics whatsoever. Prone to coming to the wrong conclusion or falling for spurious medical studies (they don't understand the concept of sample size at all) they will come to an understanding of the situation that's either overly pessimistic or overly optimistic. Best ignored.

The Story Teller - this person is usually suffering from the need to say something but not knowing what to say. They will typically try to find common ground, and will sometimes succeed if they're a survivor or close to a survivor. However most of the time they will fall flat on their faces. The stories will run from reasonable attempt ("my aunt had a cancer kind of like that and she survived") to the distressing ("my brother just died from _____ cancer, it was horrible") to the utterly insulting ("my dog had prostate cancer so I totally know what you're going through.") Generally these people are at least trying to do the right thing, so you can at least smile and nod.

The Stunned and Wordless - self-explanatory. These people will mumble "I'm so sorry" when they get their wits back. They're benign, they just have no clue what to do.


The Road to Hell is Paved with These Guys


The Blamer - Monsanto, pollution, the American Diet, chemicals in our food, chemtrails - this person is certain your cancer is caused by *something*. Their intention is generally to help, though their speeches don't actually do anything but annoy the hell out of you.

The Fixer - diet, juice cleanse, exercise, meditation, hypnotherapy, acupuncture - this person puts their trust in everything other than modern Western medicine. They will argue with you over the best treatment for their condition while (unironically, somehow) telling you that surgery, radiation, and chemotherapy will kill you. Sometimes they're right in that some people die from the treatments but they completely ignore the very important fact that an untreated malignant cancer will generally kill you much faster.

The Fixer, Religious Variant - pray enough and it will go away, have enough faith and God will heal you. You will somehow resist the urge to tell them that yes, God has answered your prayers and He will heal you... with the help of your cancer treatment team.

The Fixer, Cannabis Variant - do I really need to explain this one?

The Saint-Makers and Pedestal Builders - yes, they intend it as a compliment when they say "bless you, I could never manage keep calm and carry on in your circumstances". They honestly don't understand that it's really lonely up on that pedestal, and that you don't really want to feel superhuman at the moment, and that you really, REALLY don't want to think of your situation as that bad and unmanageable. These guys will take the wind out of your sails without knowing it, so do your best to accept it as a compliment and remember that if they were in your position they'd probably buck up and manage too.


The Narcissists


The Suddenly Absent - this person used to be a friend but suddenly dropped off the face of the planet when you told everyone the news. This fair-weather friend can't handle the discomfort or you no longer serve their purposes. Either way you're better off without them.

The More Distressed Than Thou - this person is not close to the patient or otherwise impacted by the cancer but somehow has FOUND A WAY to be more upset over the news than you are. There may be hysterics, sobbing, rending of garments or other displays of extreme emotion and those displays will be calculated to get the most attention possible. Sometimes they will suck you into comforting *them*. Avoid them at all costs.

The Conspiracy Theorist - an odd mix of the Blamer and the Fixer, this person should be benign. They're not. In all of their ranting about how Monsanto gave you the cancer and Big Pharma is hiding the universal cancer cure in a bid to get more money, they are actually demonstrating their ability to not be sheeple and not be brainwashed. Congratulations, you are now a character in their latest narrative about how The Man is killing us all.

The Nihilist - "If I were you I'd just kill myself and get it over with." Gee, thanks for that vote of confidence! This person will sap your will to live as they prove to themselves that life isn't worth living.

The Fault-Finder - this person invariably is an adherent to *some* sort of religion or dogma and needs to find the reason that you, personally, are going through cancer, Their reason is usually a variation of their concept of sin. God is smiting you personally for your sins, you smoked or did drugs, you're not a vegan, you're not eating organic, any reason will do. As long as they can come up with some reason why you're sick that's your fault they can avoid the uncomfortable truth that cancer could happen to them, too.

The Doers and the Helpers


The Doctor/ Nurse/ Medically Inclined - this person asks for specifics and either knows about the condition or runs off and does their own research. They can help you with resources, tell you where to find studies or clinical trials, vet your docs, give you tips, and otherwise help with the medical part of things. They can range from totally benign to totally helpful and give you real advice like how to find advocates, how to treat the nurses, who to talk to, and how to fight with insurance.

The Truly Empathetic - this person will listen to you rant, give you a shoulder to cry on, and otherwise be a support as best they can.

The Helper - like the Truly Empathetic they want to help you, but may not know what to say. Instead they'll show up and clean your house, bring you meals, visit you at the hospital, watch your kids, do your laundry, and otherwise help you with keeping life together.

The Avenger - this person lost someone to cancer and WILL NOT LET CANCER WIN AGAIN DAMNIT. Will do as much as they can to help you have a positive outcome, including all sorts of medical, mental, emotional, physical, and logistical support.

The Survivor - like the Truly Empathetic and the Helper they can be an invaluable resource and support, but unlike the Truly Empathetic or the Helper their knowledge of how to get through comes from real experience, either their own or from going through cancer with someone really close to them. They are the Tribe you will become part of for the rest of your life.


Mel


Wednesday, August 12, 2015

Proof and Motivation

Almost everyone I love or care about, suffers from depression, anxiety, addiction or substance abuse, chronic pain, chronic fatigue, or some combination thereof.

So, whether I would otherwise or not... I do too... It's different for me of course, but I do too.

And if you are in the same boat, so do you.

And if you are a primary sufferer, remember... those who love you are suffering through it too.

You may not see it, they may be hiding it from you, they may show it in different ways... and they most likely will not tell you, because they know you will just use it as ammunition against yourself.

And when you feel like you're alone, and nobody loves you... the fact that they are their suffering with you, is the most tangible proof you will ever have that you are loved and you aren't alone.

Tattoo it on your forehead if you have to, so every time you look in the mirror you'll be reminded.

Don't use it as an excuse to feed your depression and anxiety and pain even more... Don't use it as an excuse to justify the evil thought "they would be better off without me". Use it as proof that you're loved, and not alone, and motivation to drive on and live your life as best you can.

When you love someone... their pain, is your pain... And their "not wanting to hurt you" or minimizing or "leaving for your benefit" or anything else... I doesn't stop the pain, it makes it worse.

Use it as proof, and motivation.... it's the best that you can do.

Saturday, July 25, 2015

I am annoyingly expensive to keep alive...

Earlier, my wife posted on Facebook about our monthly prescription drug costs... It got me thinking about our total medical expenditures, and what it takes to keep me alive and functional over and above the "normal" persons needs.

I came to the conclusion that I am rather expensive to keep alive...

At this point I take 7 different daily or weekly prescription medications.

I normally take 15 prescription pills total per day, plus one injection per week (which is way down from the 23 pills a day I was taking at one point).

As of right now, we pay about $350 a month for just my scrips (down from about $600 18 months ago), out of pocket, using several different pharmacies and several different prescription discount plans (it would be three times that price if we didn't).

I think the retail on them combined, used to be around $1500 for generic, but over the past two years, it's gone down to about $900-$1000... Which is still ridiculous. Thankfully, the discount plans really help a LOT.

Name brand, DISCOUNT (never mind retail) cost on my scrips would be several thousand dollars; as name brand retail on just one of those scrips is something like $900, and a couple of the others are $300 to $700.

Oh and that doesn't include the Provigil (modafinil generic), which I have been prescribed, but don't take, because it's INCREDIBLY EXPENSIVE. It used to be $750 with the discount, and it's still $400 with the discount ($1018 retail) for a 30 day supply. And of course, that's generic... name brand is $1350 AFTER DISCOUNT!

Even when we had insurance, Provigil is only covered for narcolepsy and other sudden sleep disorders, not for what I need to take it for (sudden overwhelming fatigue and loss of mental acuity and alertness, with occasional daytime somnolence; due to endocrine dysfunction); so at best, I can get it at the discounted price.

Since I can't afford the medication that actually works.. pretty much I just gut it out. When I have the sudden fatigue etc... I take another adderall and another cytomel, and try to do things that don't require much brain function... or nothing if I can, or if I'm at home try to lay down or nap... until my endocrine system and other meds catch up and my brain works again (it can last for anywhere from 20 minutes, to 2 hours).

And of course, that's just the daily and weekly prescriptions; not the periodic or as needed scrips, or the other OTC meds and supplements that I REQUIRE... Require as in NOT OPTIONAL... necessary for life.

It doesn't include the incidental OTC medications that I need (if I were a low deductible insurance patient I'd get scrips for them, but as a cash patient OTC is cheaper). Mostly prilosec, nasocort, and zyrtec. Those run something like $100 a month for both Mel and I together, so $50 a month for me alone.

It doesn't include the appx. $200 a month in OTC vitamin and mineral supplements I have to take because my body doesn't absorb, retain, or use the amounts I get in my diet properly (megadoses of calcium, potassium, magnesium, chromium, zinc, vitamins A, b1, b2, b5, b6, b12, C, D, and E; and creatine).

Again, these are NOT optional, or I become severely vitamin and mineral deficient, and the medications that keep me alive don't work.

It doesn't include the as needed scrips for allergy and sinus medications (about $50 a month when I need them, several times a year).

Finally, it doesn't include the medicated shampoo, steroid foam, medicated oil/cream, and periodic antifungals and antibiotics; that I need to suppress or relieve certain unpleasant side effects of the cancer and endocrine issues*** (see below). Those run about $300 for a 3 month supply, so $100-ish a month... but I can live without them for a few months at a time.

Basically... I am extremely expensive to keep alive, to the tune of about $650 a month extra just to survive, another $150 on top of that to not be miserable... and $400 on top of that to be awake, alert, and functional full time.

...$1200... a month...

As I always say folks... Cancer sucks, I strongly recommend not getting it. 

*** Because I am immuno-suppressed, have endocrine dysfunction, and because my body doesn't absorb or use vitamins and minerals properly; there are a number of other unpleasant but not life threatening... mostly cosmetic and minor irritation... medical issues I have to deal with.

I suffer from moderate to severe hyperkeratosis and seborrheic dermatitis, and mild angiokeratoma and angioectasia; on my scalp, sometimes my face, and in some other "senstive skin" areas.

At times, as a complication of these, I also develop folliculitis, sebaceous cysts,and cellulitis in those areas.

It's unpleasant, but usually I can deal with it without medication, unless the infections get severe. It does mean I have to shave my head frequently, and severely scrub my scalp, among other things. Also, I've added some more gnarly scarring to the collection that had already graced my skull. 

Monday, June 29, 2015

Anxiety, Failed Methods, Helpful Methods, and ACT

(this is cross-posted from Renaissance Wife)

Hello there random reader-person,

My name is Melody, though everyone calls me Mel. I'm a wife, a stay-at-home mom (what a misleading term), and a professional assistant. I'm a writer, a geek, a baker, and a lover of pretty shoes and designer lingerie.

I'm also anxious as all hell, practically all the time. And I'm going to do something that pegs my anxiety to an incredible degree, all the way to the red zone.

I'm going to write about anxiety.

My experience with anxiety

I'm not a doctor. I don't have initials behind my name.

... but if you're anything like me, you're sick of dealing with doctors, and counselors, and psychologists and psychiatrists anyway.

What I am is a long-time sufferer of anxiety who spent much of her life undiagnosed and misunderstood. I've tried many methods, watched many methods fail, spent thousands of dollars on therapy, spent hundreds on self-help books, and finally figured out some stuff that actually worked.

The technical list of psychiatric ailments I've been diagnosed with (in order of diagnosis and age):

Depression (15)
Bi-polar Disorder (17)
PMDD (psychiatric symptoms are part of the disorder) (26)
Generalized Anxiety Disorder (26)
Social Anxiety Disorder (26)
Panic Disorder (26)
ADHD (30)

Only one of those diagnoses is inaccurate (Bi-polar Disorder). The rest were incomplete without the full list.

I've seen a lot of psychiatrists and counselors and taken a lot of different combinations of medications.

As for when the anxiety started, it took my now-husband watching me go into a panic attack before anyone figured out that's what my "tantrums" were. Watching my then 3-year-old daughter suffer through a panic attack, my mother remarked "oh, we just thought those were tantrums".

In other words anxiety and panic attacks became my companions at a very early age and, evidently, have a genetic component.

Why am I laying this out on the table like this?

I dealt with enough psychiatrists and counselors and well-meaning people who just DID. NOT. UNDERSTAND. Frankly, if you've never experienced a panic attack then you don't know how it feels, how out of control you feel, how ashamed you feel, how crazy you feel.

That leads to getting several "helpful" suggestions that are anything but.

So when I say I've found some methods just don't work, and some methods actually do, I've personally tested everything listed. When I say I've managed to significantly reduce the suffering that comes with my anxiety and the impact anxiety has on my life, that also means something.

Well maybe your anxiety is mild, and that's why it's so manageable...

My life went from being a "normal" amount of anxiety-inducing events to a raging flood of doom in September 2010, when my ex-husband tricked a judge into letting him take my daughters out of the country.

In January 2011 my husband's brother died suddenly. In February 2011, while we were at the memorial service, the IRS started auditing my husband due to lost records and seized all of the funds in our bank account. Also in February 2011 we found the cancer that caused my husband's health issues. In May 2011 we found out my husband's job of 6 years would be disappearing due to workforce reduction. In October 2011 the job officially ended. Contract work would be sporadic after that, and still is. February 2012 my husband's mother died AND the IRS seized our bank accounts, again. In August 2012 my husband went in for cancer surgery 2 days after we found out I was pregnant. We found out a few weeks later that he'd been close to dying. September 2012 saw radiation treatment and the repossession of one of our vehicles. Between September 2012 and February 2014 my husband's health fluctuated so badly that he came close to dying multiple times. In March 2013 our son was born. In August 2013 we were so financially strapped we had to leave a place we loved and move in with my father. In November 2013 we moved across the country for a job that ended up lasting only a few months. In January 2014 we ended up back at my father's while my husband struggled with health issues that almost killed him. In May 2014 we moved across the country again to live with a friend.

It is now June 2015. Work has still been sporadic. We've lost another vehicle. My husband's health is finally somewhat under control. I'm handling a hyperactive hyperintelligent 2-year-old on a daily basis. We're broke, we're almost out of food, income is another month away, our car is currently undriveable, and yet THIS IS THE BEST WE'VE BEEN DOING IN YEARS.

I know about anxiety and stress y'all. The very fact that I'm not hiding in bed 24/7 is an indication of how far I've come in managing my anxiety.

10 years ago this level of stress and anxiety would have had me popping Xanax like mad in order to not be a completely non-functional shaking mass of human hiding from the world.

I know of what I speak.

Methods I've tried and discontinued for various reasons

Counselors
Life coaches
Psychiatrists
Talk therapy
"Parenting myself"
Several antidepressants
Xanax
"Working through it"
... all forms of navel-gazing


Seriously, if it involves "tell me about your mother" I've done it. Identify the causes. Figure out the past. Find out why I am the way I am. Try to fix my brain. Try to undo the damage. Blame other people. Blame myself.

None of it worked, and I was on a timeline.

What actually started working

My mother's anxiety kept me socially isolated and therefore badly socialized.

I wanted better for my kids.

So despite the fact that social interaction caused me varying levels of anxiety ranging between "get me the hell out of here" and "full-blown panic attack" I did what I needed to give my kids the socialization they needed.

I interacted with the other mothers at school on a daily basis. I talked to the teachers. I volunteered at the school. I took the kids to after school activities, playdates, and birthday parties.

I started to notice something.

Every time got a little bit easier. Not no anxiety, just less anxiety. Like a person with a phobia going through aversion therapy, my anxiety became more and more manageable.

Not gone, just manageable. Like my threshold increased.

The panic attacks started to diminish in number and intensity, but still plagued me.


Aversion therapy was not enough

Aversion therapy didn't get me all the way there. We moved during this time, and leaving behind old patterns and habits helped. Continuing the aversion therapy through social interaction helped, as long as I kept pushing my limits. Knowing my limits and not pushing too far past them helped. Self-care and proper nutrition and rest helped. Self compassion helped as well.

The anxiety still plagued me. I still wanted to be rid of the anxiety and panic attacks forever. I wanted to be "normal", to not be "sick", to be "healthy".

So while I reduced my anxiety, life circumstances never let up and I was always one more major problem away from rolling panic attacks. I'd made tremendous progress but life seemed intent on throwing even more anxiety and panic inducing circumstances my way.

While my ability to deal with the anxiety increased, the physical symptoms of the anxiety also increased and made me utterly miserable.

Sometimes you just need to ask the right person

In this case the right person ended up being a friend who is a doctor who told me to look into an alternate therapy concept called ACT, or Acceptance and Commitment Therapy.

ACT ended up being extremely helpful, and while I still end up in occasional panic attacks (low food supplies mixed with lack of cash mixed with changing life circumstances outside of my control is my panic-causing kryptonite) the panic attacks have gone from controlling me to being annoying. If one more major life stress is resolved I expect the panic attacks to leave me be until something else potentially life-ending occurs.

But isn't the goal to get rid of the panic attacks and anxiety?

That's an awesome, noble goal. I've spent years of my life chasing that particular goal.

I've got next to nothing to show for it, other than an empty bank account and a huge stack of self-help books that didn't help at all.

Learning to live with the anxiety and manage how it affects my life, well, that's actually improving my life.

That's the goal of ACT: learning to live, function, and pursue your goals despite the anxiety

Remember when you thought figuring out why you were the way you were would suddenly resolve the issue and make you a healthy person without insane levels of anxiety?

How well did that work?

It doesn't. That kind of navel-gazing makes the assumption that your anxiety somehow responds to logic and conscious attempts to change.

That's a faulty assumption.

Don't get me wrong. Understanding the "why" is useful, in that it helps you practice the self-compassion you'll need to manage your anxiety. It's just not the end.

The fundamental assumption of ACT: your brain is a dirty, dirty liar that isn't interested in your happiness, only in avoiding pain

This makes sense. Happiness isn't a survival strategy, Avoiding pain is an awesome survival strategy, if your life isn't complex.

Panic attacks are often associated with the "fight or flight" instinct and tend to happen in situations in which you don't pick either option. Your brain has associated the anxiety-causing situation with pain or fear and therefore tries to get you to get the hell away because it might kill you.

Useful reaction, if the situation is coming across a mama bear in the wild. Detrimental reaction if it's your first day at a new job and your brain is balking at the concept of the unknown. "What are you doing?!?!?!?!?!" your brain screams "we've never been there before and there might be a predator hiding in there!"

Congratulations! Your insanely low anxiety threshold would have made you more likely to survive and have children who survived... when we were still in caves.

Our brains haven't exactly caught up to our new world order.

Even better, our brains can "learn" to identify more situations as dangerous because they cause us emotional pain. Ever been heckled on stage? Stage fright for you from now on. Been bullied? Let's avoid other people, because they cause us pain. Cheated on? Have a freak out every time your new man is out of sight, courtesy of your brain learning that situation causes pain.

There's nothing conscious about this. Your brain would just rather avoid the pain. It's not smart enough to reason through the fact that no risks means no change, and no possible increase in happiness.

In order to convince you that you're better off avoiding those situations, your brain plays a dirty trick on you: it lets you think it's right and that your emotions are right and based on reality. In other words it lies to you and lets you think that your thoughts and emotions are truthful and real.

Thoughts and emotions do not necessarily reflect reality

How much conscious control do you have over your thoughts and emotions?

Try not to think of the pink elephant.

That's how much control you have over your thoughts, next to none.

Ever watch a movie and burst into tears?

That's how much control you have over your emotions, so little that someone who doesn't even know you can manipulate your emotions.

ACT is about recognizing that your thoughts and emotions aren't you and don't necessarily reflect reality.

This is a radical departure from therapies that you may have tried before because...

ACT isn't an attempt to "fix" your brain, it's an attempt to learn to live with your brain

What happens if you accept that your thoughts and emotions aren't necessarily real or truthful and your brain manufactures anxiety based on unconscious assumptions that you don't control?

You stop trying to control it. You accept the way your brain works. You accept that the thoughts and emotions exist but don't necessarily mean anything.

That's the A in ACT. Acceptance. Your brain, your thoughts, your emotions are not "you" and not fully under your control.

Try not to think of the pink elephant. Try to keep the image out of your mind.

Now think of the pink elephant and let your attention go somewhere else.

What took less energy and ended the thoughts fastest? Struggling with them and trying to control them, or noticing and letting them go?

Emotions are much the same. Ever try *not* to be angry at someone? How well did that work? What about just admitting you're angry, accepting it, and moving on to something else?

How much did your anxiety level just drop?

One of the theories behind ACT is that the act of trying to control the anxiety, the thoughts, and the emotions is actually more painful and damaging than just letting the anxiety, thoughts, and emotions happen.

You notice the anxiety, you notice the symptoms, you notice the thoughts, you notice the emotions, you accept that they exist, you let them go (there's several techniques for this that can be found in any book outlining ACT), and you go act in accordance with your values and goals without regard to the anxiety.

ACT isn't about how you think or feel, it's about what you do

What would you do if you didn't have anxiety? Finally finish that book? Get a degree? Ask that person out on a date?

ACT is about learning to do what you want and need to do despite the anxiety, thoughts, or emotions that plague you.

That's what the C stands for: commitment. Commitment to your values and goals.

Is a clean house important to you? Do you go into a panic attack any time you start to clean because of past trauma (I do)?

The goal of ACT is learning to clean the house despite the panic it will induce. Or talking to a stranger, Or being on the stage.

The goal is to act in accordance with your values and goals. The side effect is a reduction in anxiety,

Think about it. Doing things despite your anxiety is just another form of aversion therapy. Every time you do what causes you anxiety and you don't suffer harm, you brain (as stupid as it is) believes in the supposed danger of the situation a little bit less.

Do it enough, and the brain barely puts up a protest anymore.

Keep avoiding it however, and the brain continues to think the situation is horribly dangerous and must be avoided at all costs. The more you think about it, the more anxiety you feel, the more your brain interprets the anxiety as pain and danger, the more powerful the anxiety becomes.

Learn how to push forward despite the anxiety, and the anxiety starts dropping.

Counterintuitive, huh?

ACT is about learning methods for letting go of the thoughts and emotions so you can do what you want to do. There's mindfulness techniques, relaxation techniques, techniques for resolving panic attacks, the whole deal. More techniques than I can list here.

Eventually you get practiced enough that you don't need the crutch in the form of the techniques. You just accept what's going through your head and go on your merry way doing whatever it is you need or want to do.

So why did I spend so much time going over ACT?

Frankly, it's a new way of thinking about therapy, and... well...

Okay fine, Psychologists seem to only speak two languages: jargon, and "woo".

I understand jargon to a certain extent. I hate hate hate "woo".

Jargon makes them sound smart and gives specific words for specific purposes. Woo sells self-help books.

I should know. I have an entire stack of them.

For example:

Developed within a coherent theoretical and philosophical framework, Acceptance and Commitment Therapy (ACT) is a unique empirically based psychological intervention that uses acceptance and mindfulness strategies, together with commitment and behavior change strategies, to increase psychological flexibility. Psychological flexibility means contacting the present moment fully as a conscious human being, and based on what the situation affords, changing or persisting in behavior in the service of chosen values.
I can't tell if that's a mission statement or a description of a new religion, or both.

I love the book I picked up on the subject, The Happiness Trap, but it even has a sprinkling of the woo, enough that sometimes it sounds like the psychological equivalent of healing crystals.

It's not, it's actually very useful, the techniques outlined are very useful, the ways of looking at things are very useful.

If you're expecting anyone writing a self-help book based on clinical therapy techniques to somehow translate into layman properly, you're expecting too much.

That's why I was asked to write something up from the patient's perspective, and why I encourage you to look into ACT and aversion therapy as techniques for dealing with anxiety. They actually do work, and while my anxiety is not gone with a combination of the techniques I'm improving my life despite the panic.

Rather than wait to be perfectly healthy, I'm doing what I need and want to do the way I am, at this moment.

I'd rather be happier now than keep trying for a perfect that will never happen.

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, October 08, 2014

The Road Not Traveled

This story is making the rounds on Facebook this week:

Brittany Maynard, a 29-year-old woman battling stage 4 brain cancer from San Francisco, plans to die two days after her husband’s birthday on Nov. 1 by assisted suicide. As part of her legacy, she’s launched a nationwide campaign she’s launched calling for death with dignity laws.

I understand where she's coming from. Chris's brother Rob made the decision not to treat his cancer. Chris made the decision to beat the hell out of his cancer.

Two different decisions, two different roads.

I won't debate Brittany's decision, I'm not in a position to pass judgement either way. She sees her options before her, the roads she could take, and she's choosing the road she thinks is best. She's dealing with the difference between a few months and six months.

We're familiar with that timetable; when the histologist's report came back on Chris's cancer the surgeon told us if he hadn't removed the main tumor Chris would have been dead in two months.

Geeks (and sci-fi geeks in particular) talk about alternate universes. Rarely are the alternative universes involved so easily defined. On one road Chris's cancer is removed just in time. On the other road, two more months are what kills him.

I don't often think about the universe that we don't live in. I try to actively avoid doing so actually. In that universe I'm widowed at 32, pregnant, and grieving my husband alone. I would have been in deep grief when Christopher was born. I'd most likely be living with relatives and raising a son without his father now.

In the universe we DO live in Chris is here for his son. In this universe Chris was there for his son's birth, his first words, his first everything. In this universe we're barely scraping by but Chris is alive and here with us. That's the road he's traveling, and therefore the road we're traveling with him.

Every now and then people who don't know any better do something to piss me off. They tell me how they couldn't do what I do, how they wouldn't be able to handle it, how it's amazing that I do what I do in the circumstances I'm in.

It pisses me off because it's a mix of pity and disbelief, and honestly I don't need to think about other peoples' lives or how much better things could be. When I dare to look at how much easier it is for other people, or how much better life could be, the self-pity monster comes out and messes me up. Just going into that headspace can screw me up for days.

Because yes while my life is "so much harder" than the lives around me (or what the lives around me look like superficially), I don't draw strength and resilience from that comparison. I don't strive to have their supposedly easier lives.

I draw strength and resilience from the knowledge the surgeon gave me that day. Out of the two roads before us, Chris and I are traveling the road that leads to the better future.

The other road didn't have Chris. This road does. This is my best possible future, hardship and all, because this future includes Chris.

That's why I get up every morning and why I keep trying to improve our lives, because I know what the other road looks like. I'm much happier to be in this life.

Mel



Wednesday, May 14, 2014

There's no age restriction....

Hey, 20 somethings and 30 somethings... I have some advice for you...

You are not immortal, and cancer happens in your 20s and 30s, as much as in your 40s and 50s.

--

I was about 27 or 28 when my cancer could have been detected...

It wasn't ACTUALLY detected until I was 33, in late stage 2... and it wasn't thought to be too serious.

When it was removed 18 months later, it had progressed to stage 4, even though I was under the care of excellent doctors. When it was removed, I was at most, three months from dying, possibly as little as a few weeks.

--

My brother died a few months before he was 32. His cancer wasn't discovered until it was stage 3, when he was 29...

It could likely have been detected when he was 25 or 26, but by the time it actually WAS detected, It had progressed to the point where he had decided that living with the treatment was worse than dying from the disease.

He died of a painkiller overdose, while recovering from an infection caused by his cancer.

He was 31...

31...

--

My friend David Smyth, Heck, just died because they didn't find his cancer until it was stage 4.

Had they looked for it properly.... had anyone known... It was probably detectable some time before it was actually discovered.

By the time anyone figured out it was cancer, it was stage 4.

Heck died 4 days ago, at age 31.

--

Stop thinking that cancer is just something that happens when you're old... or you might not live to see "old".

Thursday, February 13, 2014

Better, but not Recovered

Robb Allen posted something yesterday about his father in laws last chemo treatment. He notes how he's come to understand that once the docs are done treating the cancer, you aren't exactly "cured"

You're better because you aren't dying any more, but you aren't recovered.

Your cancer goes into remission, but you're not cured.

 I've officially been cancer free for 1 year, 1 month, and 21 days (my doc declared me cancer free Dec. 22nd 2012).

The last six weeks or so, have been a very vivid reminder that while my cancer may be gone, I am by no means recovered.

I had multi-endocrine cancer, which had metastasized into my blood stream (there was extreme vascular invasion, but thankfully it had not gone lymphocytic).

The cancer presented as a primary thyroid tumor (which eventually grew to over 4" in diameter), with secondary lesions throughout my endocrine system, which caused my body to go haywire in many strange ways (this is called paraneoplastic syndrome).

We treated the cancer with surgery, and high dose radiation. No chemo thankfully.

Between the cancer itself, and the radiation, my endocrine system is permanently damaged. I no longer have a thyroid, and my other endocrine glands and regulating systems are shot.

They'll recover somewhat over the next 3 or so years, but will never work properly again. I'll be on hormones and endocrine medication for the rest of my life, and even then my bodies regulation will be erratic at best.

I am immunocompromised, even more than a year later. Over time it will improve somewhat, but I will likely always have some level of immunodeficiency.

Because of the radiation, I'm now infertile (most likely permanently, though there is a small possibility some slight fertility may return over time. It's also possible that doctors could harvest viable sperm from me, and we could conceive with IVF).

I now bruise easier, and don't heal as well. I have less energy overall, and I'm fatigued easier. My inflammatory response is completely out of whack...

There are mental side effects as well. It significantly impacted my memory, both short and long term, both retention and recall. I have far less focus, mental energy, and mental drive than I used to. My attention span, and depth, are both worse. I can't concentrate like I used to, nor can I split my attention like I used to. I've become absent minded, and now have difficulty remembering names, dates, addresses and phone numbers. I often can't recall words, names for things, technical terms etc... even for areas in which I'm an expert.

I've always been an insomniac, but its FAR worse now than it has been at any time in my life except my early teens (another time when hormone regulation is out of whack).

There's all sorts of relatively little things... but they add up.

Most of them should get somewhat better over time, though there's no way to know how much.

I the mean time though... at times it FEELS like I'm recovered, until I try to do things like I used to.

Then I get smacked pretty hard in the face with just how NOT recovered I am.

It's very... discouraging, disorienting... it's almost an alienated feeling; when you know this is something you should know, or be able to do, or were good at... and it's just not working.

Robb also talks about how some cancer patients, when their cancers come out of remission, decide to live and die as it comes, rather than go through more chemo or radiation.

I can understand that. I dont think that would be my choice, but I can respect it...

It's the choice my own brother made.

When he was 30, doctors found that Rob had developed a rare type of bone cancer, with lesions in his pelvis and femur.

When they found it, it was treatable.

The treatment would have involved cutting muscle away from bone, and excising the lesions in the bone (literally burning then grinding them out), followed by chemotherapy, and possibly radiation.

Even if the treatment were successful, it would have left him unable to walk, and either confined to a wheelchair, or at best using crutches; most likely permanently. No matter what, it would have been incredibly painful, with literally years of recovery time, to a life far more constrained than the one he had before.

And after all that, there was a high likelihood the cancer would recurr anyway.

Rather than go through that, my brother chose not to treat his cancer.

Rob died a few months before his 32nd birthday, from a combination of the effects of the cancer,  a septic infection which weakened his body dramatically, and an accidental overdose of the several different kinds of opiates he was taking (for the pain from the cancer and the infection).

There's no such thing as a good way to die from cancer, but my brother died as he chose to. That's better than nothing.

I am sick of the last six weeks

The last six weeks have been double plus ungood.

This is a long story, but I really need to get it all out, at least to vent.

Ok... here goes.

So, just before we left New Hampshire, after a month of looking for a house and being repeatedly disappointed (a couple were sold out from under us, a couple weren't available 'til March or April etc... etc...), we managed to sign a lease on a house in Laconia.

Laconia is the biggest town in the New Hampshire lakes region, and largely the center of activities for the area. It's a nice place, an old mill town, and it still has a lot of the original 19th century architecture.

If you're a biker, Laconia has additional meaning, because it's the home of the third largest motorcyclist gathering in the country (after Daytona and Sturgis); Laconia bike week, held the week of fathers day every year.

The house wasn't exactly what we wanted (we wanted rural, or at least private, on some land if possible), but it was near the big lake (less than a mile from Winnepesaukee), pretty big (5 bedrooms, over 3000 square feet including the partially finished basement), in a nice quiet neighborhood but still close to everything, and it had a big fenced yard (important for the dogs). It even had a good sized pool off the rear deck.

So yay, new house.

Now all we had to do was drive back to Arizona, get our stuff and our dogs, then haul all of it, and us, back to New Hampshire.

How hard could that be, right?
**No, I wasn't silly enough to actually say, or even think, "how hard could that be" or "what could go wrong". After DECADES of extremely painful experience, I most certainly know better. Ask those questions, and they WILL be answered, THOROUGHLY.
Yeah... So that's when the REAL unfun started 

Actually, to be fair, the prelude to the unfun started on Christmas day, when Mels 93 year old grandmother (who lives with Mels dad) had a stroke, falling and breaking her hip in the process.

Now, our original plan was to drive back to Arizona over new years, spend less than two weeks with Mels dad (one week of which I was supposed to be at a clients site in Seattle), hook up the trailer, pack up the dogs, and head straight back to New Hampshire.

The second part of that got screwed up just before we left.

Mels grandmothers injury put her in the hospital for a week, after which she was transferred to a rehab clinic. The plan to deal with Grandmas injury was to have her come home from the rehab clinic the following week, and get a live in home care aide.

From a practical standpoint, what that meant to us, was that we couldn't stay with Mel's dad, because the spare bedroom would be in use by the home care aide.

So then, the plan was to stay with Mel's best friend (none of my friends in the area were in a position to put us up for a couple weeks). Unfortunately, her housemate (who is also her brother) objected to living with a two extra adults and a teething baby for a few weeks (understandably. It's a small house, and there's not a lot of noise isolation).

What we ended up having to do, was stay in a hotel; which should have been fine, since it was only supposed to be for a couple weeks anyway.

Sure, it's not cheap even in a room with a kitchen (it ended up being about $450 a week at an Extended Stay America. You pay more for the kitchen, but spend a LOT less on food and drink), but it's certainly tolerable.

So... then we actually set off...

The trip itself was pretty nice actually, minus the repeated ice storms. We got to hang out with friends and family we haven't seen for a while, and I got to meet family I hadn't met before; always good things.

Unfortunately, towards the end of the drive, I started coming down with something.

From about January 4th (when we checked into our hotel), I had a full blown flu. From the symptoms, likely H1N1 aka "Swine Flu", which has been widespread this flu season.

Meanwhile... 

...actually, while we were driving from NH to AZ...

...the client changed their schedule.

So, instead of being onsite the week of the 6th, I was supposed to be onsite the week of the 13th.

From one perspective that was a good thing, since I ended up being sick the week of the 6th and wouldn't have been able to fly out there anyway.

Unfortunately, we were planning on LEAVING Arizona the week of the 13th (we were supposed to take possession of the house on the 15th). Moving the onsite a week later, also also meant staying in AZ until at least the 20th, and for logistical reasons the 25th.

So, we changed our plans again, and extended our hotel stay to the 25th.

Then, the Friday before I was to leave, the client cancelled the onsite week entirely. So, yay, I didn't have to fly while I'm still sick, but we'd already prepaid for a hotel through the 25th (had to prepay or it was 20% more expensive), and rejiggered everything else to make the 25th work. We couldn't change it all back.

Turns out that the later date would have been necessary anyway however, for four reasons:

First: At the same time as my client was being fickle, our new house in New Hampshire had a pipe burst. A large portion of the house flooded, with significant water damage; and the house wouldn't be ready for us to take possession until at least the 1st of February, possibly later.

We planned on, and agreed with the owners to take possession of the house on the 5th of February (that way we could leave the Friday before, and drive over the weekend, giving us plenty of time to get there).

Second: The next week, the steering on our truck failed while Mel was driving it.

Thankfully no-one was hurt, but the entire steering mechanism and part of the suspension were badly damaged, and needed replacement (with a newer design, heavier duty setup from the factory).

The failure was due to defective tie-rod ends (which it turns out were subject to a recall). The tie-rods were covered under the recall, but the parts that were damaged or destroyed because of them (and the associated labor) were not. The repairs, all up, including a rental car for five days, ended up costing about $3,000.

Third: Money...

By January 31st, between repairs, hotel bills, additional meals, additional travel expenses, and unreimbursed expenses from work (they're being paid on my check this Friday), we had to lay out a HUGE amount over our planned and budgeted expenses for the month.

Then there's the AMEX bill, covering all the previous travel and expenses, and purchases from December (moving is EXPENSIVE).

Then there's the actual BUDGETED travel expenses, and all our regular bills and expenses (truck payment, fuel, food, insurance, phones, medications etc... also budgeted).

Combined, our total outlay Jan-1 to Jan-31 (which, to be fair, included paying most of the bills and expenses from December) was somewhere around $17,000 (and no, I don't make NEARLY that much a month. In part it was covered by expense reimbursement, combined with pretty much all of what I took home in January, and part of what I took home in December).

That's nearly double the outlay we had planned for the month.

That $17,000 meant we wouldn't actually have enough cash to complete the move ($4,200 in rent and security deposit on the house, and $2,500 in travel expenses for the drive. Hauling a trailer, 3 people, and 2 dogs 3000 miles is EXPENSIVE) before February anyway.

Fourth: At that point I was still sick, and getting sicker.

The flu seemed to subside around the 14th or so, which was good. Unfortunately, the flu led to a sinus infection and bronchitis, which was not.

The sinusitis and bronchitis hung on for a while, but I was managing the symptoms fairly effectively with medication (I take adderall, and a very strong anti-inflammatory anyway, and it just so happens that the combination makes a pretty effective treatment for the symptoms of sinusitis and bronchitis).

Unfortunately, I take those medications because I need them to function properly. When their effects are being taken up relieving symptoms, they aren't actually making me functional.

Worse, the medications also masked the fact that I wasn't actually getting better. I was just staggering along being propped up by the wonder of modern medicine.

Some time around Friday the 24th, I started getting sicker again.

MUCH sicker.

For the first week I thought it was just a combination of sleep deprivation, and a relapse of the flu.

Meanwhile...

We couldn't extend our stay at the Extended Stay America past the 25th, as they were fully booked. Unfortunately, this is the time that peak golf travel season hits Arizona, and rates at any of the extended stay/kitchen suite places went from $450 a week, to $700 a week, basically overnight.

Thankfully, rather than find a place for a week at a ridiculous rate, a friend agreed to let us stay with him 'til the end of the month (when we planned to leave for NH).

Unfortunately, he got sick that week as well (though not from me. I was past the contagious stage then, and it turned out to just be a bad cold or maybe a light flu for him).

And I kept getting sicker...

By Sunday the 26th, I was pretty much in bed 24/7. In fact, from the 26th until today (February 13th. 19ish days ), I've pretty much been sick in bed, minus changing the actual location of said bed.

A couple times I've felt better for a day or two, only to be slammed back down even worse afterwards.

Anyway, our friend was sick, and he needed his place free of a teething baby and two houseguests in order to rest.

So, we ended up transferring from our friends place to another hotel a couple days early, and swallowing the $700 for a week (six nights actually). At least it was a much nicer place than the ESA (a Hilton garden inn, with a 2 room suite. Funny thing was, it was actually only $40 more than the ESA would have been).

Unfortunately, I couldn't enjoy the nicer surroundings, because I was pretty much out of my head sick. By that point, it was clear that my Bronchitis had developed into pneumonia.

And then life got more complicated...

At that point it was ALSO very clear we wouldn't be leaving AZ until WELL after the fifth. So, we asked our new landlords if we could take possession on the 15th.

Initially they agreed. Unfortunately, a few days later, they insisted that we take possession on the fifth, and pay a full months rent for February, plus the deposit etc... and that they wanted the full amount by the 5th.

Apparently the husband (who had initially agreed to our request) was fine with what we wanted to do, but the wife wasn't, and she was making the decisions.

After I told them this was unacceptable to us, they agreed to prorate the rent from the 5th, but no further.

I told them I was perfectly willing to pay from the 15th, ON the 15th, whether we were there to take possession or not; but that we weren't going to pay a full months rent for a half months occupancy (or likely less, given that we wouldn't even be able to LEAVE AZ until at least the 15th... frankly I doubted whether we could get to NH before the end of February). I thought it was kind of silly to lose tenants over a matter of 10 days rent, and that if they agreed to the 15th I would be willing to send them half the security deposit immediately.

Well, that wasn't acceptable to them.

So as of February 1st, we were stuck in Arizona, no longer having a new house to bring our stuff and our selves back to.

We started looking for a new place immediately of course.

And we had to change venues again...

By the 1st, it was clear that Mels grandmother wouldn't be coming home. Between her injuries, the stroke, and her dementia, she can no longer be cared for at home, even with an aide. She's still in the rehab facility, but when they release her, we're transferring her to a 24 hour care facility.

This is really for the best. She needs 24 hour care that she can't get here.

That also meant that the spare room in my father in laws house would be available to us again (of course, it ended up being available the whole month, and we could have avoided wasting $2,000 for a months worth of hotel charges, and god knows how much more on a bunch of takeout/restaurant meals for when we didn't want to use the kitchenette... but we didn't know that at the time).

So, not knowing how long it would take to find a new place to live in NH, and rather than pay for more hotel rooms, on the 5th we transferred our operation back to Mels fathers house.

And I kept getting sicker...

The day we moved over my father in laws house, I basically collapsed into the bed, and I've barely left it since.

The last eight days have been really bad, with low to medium fevers, sweats and chills, lots of pain (particularly joint pain, and stomach pain), a nasty cough, myalgia, stomach and intestinal issues, sinus problems, photophobia... it's just sucked frankly.

Actually, yesterday (the 12th) was the first day since the 24th that I didn't have a fever.

The only compensation has been that for most of the past week, the pneumonia has knocked me out for 10 or 12 hours a day. For the first few weeks of this crud, it was bad enough to keep me from sleeping, but NOT bad enough to knock me out.

Oh and by the by, my wife, and my 10 month old son have ALSO been sick for the last three weeks (since the week with our friend), though thankfully it's just been a mild flu or bad cold (it can be hard to tell) and a touch of bronchitis for them.

...Of course, it's also kept THEM from sleeping  until the past few days as well.

Combined with the boys MASSIVE teething issue the past month or so... (he's cried more in the last six weeks than he did in the entire previous 9 months)... I pretty much hadn't slept the entire month of January.

Basically I was averaging about 2 hours of not particularly restful sleep out of every 24.

And then of course there's been the stress issue. The money, the mad rush, the uncertainty, the not having a place to live... You could say it's been a LITTLE bit stressful.

Between being sick, and not sleeping, I was pretty much a zombie for most of January (unless I was taking plenty of adderall, nasal spray, and anti-inflammatories, which you can't do all day every day).

Oh and of course, stress, sleep deprivation and exhaustion make illnesses worse, and make healing much harder. Frankly, it was probably the sleep deprivation and exhaustion that made it progress to pneumonia in the first place.

The bad news...

I just spent most of my second month (and half my third month) with a new employer, dead sick. For two weeks of that, I've been damn near useless.

I've been so sick, I've barely done any useful work in the last two weeks (I've been doing a lot of reading and research, and a little bit of writing), and I haven't been on anything billable for four weeks.

Also, I'm still in Arizona, a month after I was supposed to be back in New England, with at least a few more weeks to go before I actually make it back.

They're somewhat less than thrilled with me at the moment.

The good news...

I've got two pieces of good news actually.

First, the pneumonia seems to have broken. I haven't had a fever in over 24 hours, my coughing is greatly diminished... the only major thing really left is a particularly nasty sinus problem... and I think that's really a leftover, not a new sinus infection.

Second, we found a new house... and it's damn near exactly what we were looking for, at about half the price the Laconia place was (though it is MUCH more remote... which is both good and bad). Even better the owners are going to work with us on a lease to buy option. We're in the process of signing on it now (more on this house in a later post).

Ok, vent over...