While reading some medical stuff recently I came across the phrase, “When you hear hoofbeats, think of horses, not zebras.” I thought it was essentially the same as Occam’s Razor, but Wikipedia says they’re different.
In the next month I’m going to have a CT scan, an MRI, radioactive iodine, gamma radiation, more radiation, then more radiation. So it seemed fitting that I should buy The Incredible Hulk tv series DVD set. :)
Back in the day, this series was influential on me, and I was very aware of its influence. After moving out of Chicago we lived in a small town, and this series opened my eyes to the possibility of just wandering around and living a vagabond lifestyle.
When I was young I used to think, “How do I know where I should live? Where’s ‘home’? Maybe I should just wander around until I find a place that feels right.” That may sound unusual — it seems like most people want to settle down in one place — but I feel fortunate to have lived in many towns and many states, and gotten to know people in all of those places.
My mother is the nicest person in the world, and has dementia. She was also in a coma for ~10 days after falling down a flight of stairs in 2015, which eventually resulted in both of us being patients in the same hospital at the same time.
During a lucid moment last week one of my sisters asked her why she didn’t do something, and mom replied, “I have trouble remembering things.” :)
As of this past Thursday, June 23, 2016, I am now being tested for something called “Systemic Mastocytosis.” rarediseases.org describes this illness as, “Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs (liver, spleen, gastrointestinal tract and lymph nodes).”
From the Mayo Clinic website:
“When triggered, these mast cells release substances that can overwhelm your body. You might experience symptoms such as facial flushing, itching (pruritus), a rapid heartbeat, abdominal cramps, lightheadedness, or even loss of consciousness (syncope).”
From rarediseases.org
“Bones affected by mastocytosis may become softened and deteriorate ... break-down of bones ... may lead to life-threatening episodes of anaphylaxis (anaphylactic shock).”
They also state, “Recent studies have found that up to 10% of patients with severe allergic reactions to bee stings may have mastocytosis.” I don’t know what they mean by “severe,” but I’m supposed to carry an EpiPen with me after having a bad reaction to a bee sting in the late 1990s.
I also developed severe facial flushing and hives after having an “MRI with contrast” a few weeks ago, and patient.info states that “some radiographic dyes” are a possible trigger for mastocytosis symptoms.
1) The first problem in figuring out what’s going on with my body is that all of these illnesses are rare, so you have to find a doctor who knows about them. An endocrinologist deals with the pheochromocytoma and paraganglioma, and I don’t know who specializes in mastocytosis. This is what led me to the University of Colorado.
2) The problem with figuring out if I have (a) mastocytosis or (b) pheochromocytoma/paraganglioma is that I have symptoms of both illnesses. For instance, I have facial flushing, itching, rapid heartbeat, abdominal cramps (twice), lightheadedness, loss of consciousness, nausea, vomiting. I also have a problem I describe as feeling like my bones are spontaneously breaking while I’m doing nothing. The last time that happened I couldn’t walk on my left foot for four days. Furthermore, in regards to blood pressure, if anything my blood pressure tends to go high rather than low, and that’s more a symptom of pheochromocytoma/paraganglioma than mastocytosis.
3) A third problem is that I have many of these symptoms, but not all of them. For instance, I don’t have any skin lesions, so I surely don’t have “Diffuse cutaneous mastocytosis.” I also don’t have diarrhea, which seems to be a common mastocytosis symptom. Both illnesses state that headaches are common, and I had severe headaches for nearly three months late last summer, but since then they have subsided.
4) A fourth problem is that my previous labwork indicated that I may have a pheochromocytoma or paraganglioma, but the University doctor suspects that mastocytosis is more likely. My labwork showed certain values that were two to three times higher than normal, and she said that most people with these tumors have values that are five times normal, or higher.
5) Back in December through February I used to have “attacks” (or episodes) where I would have severe symptoms that would last 15-30 minutes, but more recently this has changed, and now the symptoms are much more consistent (and persistent). They aren’t “attacks” so much any more as they are things that I try to live with. I either try to work through them, or I lay in bed as long as necessary.
6) Finally, another problem is that there are other things going on. Several times since December my calcium levels have been high, and despite being on a DASH diet since December, my creatinine level has been measured between 1.2 and 1.8, with the latter tests indicating CKD II or III.
When I was trying to read about “bone pain” in regards to mastocytosis last night, I found some numbers related to mastocytosis life expectancy. I can’t find the website I was looking at last night, but that website said that depending on the sub-type of mastocytosis you have, the life expectancy would be one of these things:
This isn’t the same website I was looking at, but patient.info states, “The median survival for aggressive systemic mastocytosis is 41 months and for mast cell leukemia it is less than 6 months.”
If you’re interested in the nitty-gritty research details, it looks like the original source of this information is probably this bloodjournal.org article, which states, “Survival in patients with ISM (median, 198 months) was superior to that of patients with ASM (median, 41 months), SM-AHNMD (median, 24 months), or MCL (median, 2 months).”
Honestly, those numbers strike me as odd. The thought that comes to mind is, “X number of months from what?” In my case, I knew something was wrong last October when I first went to my doctor. After that I started passing out on December 14, 2015. Then the symptoms went from (a) “episodes” to (b) nearly constant somewhere around February. And now in June I’ve been passed from one doctor to another, and she wants to repeat the labwork. So again, “X months from what exactly?”
While my doctor at the University is testing me for systemic mastocytosis, I forgot to ask her how or why this would also result in labwork that indicates a possible pheochromocytoma or paraganglioma. Obviously I’m not a doctor, but it seems weird to have labwork that shows I may have these things, but she thinks it’s more likely that I have the systemic mastocytosis.
That being said, she isn’t ignoring this labwork; she just doesn’t seem to trust the previous labwork and wants me to repeat it when my symptoms are bad again.
Honestly, the thing running through my mind is, “How many more bad days do I get to have before I don’t get to have any more?” All of the symptoms are consistently getting worse, so when you’re going through this it makes you wonder how many times you can pass out, until one time you just don’t wake up again. (If it’s not obvious, I’m a wee bit frustrated at the moment.)
May the Fourth Be With You.
Waitin’
Watchin’ the clock
It’s four o’clock
It’s got to stop
Tell him
Take no more
She practices her speech
As he opens the door
She rolls over
Pretends to sleep
As he looks her over
She lies and says
She’s in love with him
Can’t find a better man
She dreams in color
She dreams in red
Can’t find a better man
Talking
To herself
There’s no one else
Who needs to know
She tells herself
~ Better Man, by Pearl Jam (a favorite song of the last week)
“Writing a book is an adventure. To begin with it is a toy and an amusement. Then it becomes a mistress, then it becomes a master, then it becomes a tyrant. The last phase is that just as you are about to be reconciled to your servitude, you kill the monster and fling him to the public.”
~ Winston Churchill
“If you’re going through hell, keep going.”
~ Winston Churchill
Fact of the day: Billionaires Larry Ellison of Oracle, Steve Jobs of Apple, and Jeff Bezos of Amazon were all adopted.
Jobs met his biological mother and sister in his thirties. He would later meet his biological father once in passing at a restaurant, and they even shook hands, but they didn’t know they were father and son.
Bezos grew up with his biological mother. He says he doesn’t remember his father, who he last saw when he was three years old.
Ellison would meet his biological mother at age 48. (That’s all I know about him.)
(jeff bezos information from the book, the everything store)
When I went to the gym today a very large young man looked at me like, “What are you doing in my gym, old man?” Before he left, he gave me the “You’re welcome to come back” nod of approval.
Don’t let a rare blood disease, multiple types of cancer, or musclebound young men intimidate you. :)
You can tell sometimes when doctors have something they don’t want to tell you. One of my doctors is an older “manly man” kind of guy, and while we’ve had some interesting conversations, they’ve never been about clothes. But the last time I saw him he walked in and said, “That’s an interesting shirt. What does it say on it? Where did you get it?” The conversation felt weird, and then I realized he was stalling. Finally he said, “Well, the biopsy shows that you have cancer.”
So now, ever time I put that shirt on, like today, I think of that conversation.
Today’s song of the day is, Can You Read My Mind, from the 1978 Superman movie.
Today’s song of the day is Sinner’s Prayer, by Godsmack’s Sully Erna.
“They can be a great people, Kal-El, they wish to be. They only lack the light to show the way. For this reason above all, their capacity for good, I have sent them you, my only son.”
~ Jor-El, the first Superman movie
Doctor: This isn’t the type of cancer where we tell you to go fishing.
Me: Phew, that’s great to hear, because I really don’t like fishing.
Here are some of the lyrics from one last Sully Erna song today, this one named Seven Years:
If there was no tomorrow
Would you still remain the same?
Or live your life so shallow
And take it for granted everyday?
So take away tomorrow
And tell me again why we blame
Why we waste all our time
When time may not wait another day
So again, years go by
So many tears I cried
Now that we’re through
I’ll still honor you
And harmlessly swallow my pride
It’s time to fall away
It’s time to separate
And maybe we’ll be alright
Seven years gone by
For seven years
I’ve tried to make it
But how long can I take it
It’s time to fly
Seven years gone by
If there was no tomorrow
Would you still retain all your hate?
Or live your life with no one to spite
And free your spirit again
Here’s another beautiful “unplugged” song from Sully Erna, this one is named My Light. A few lyrics:
You always bring me light
And you help me find my way
A gentle kiss goodnight
Is the innocence I crave
Here I am
Humbled and amazed
This beautiful little miracle of life
Was gifted to me
And here I am
I never thought I’d say
If ever I could live my life again
I’d live it your way
You’ve always brought me life
And you’ve helped me find my way
A simple kiss goodnight
Is the innocence I crave
Under the light you shine on me
I promise I will be there for you baby
I’d never wanna leave you anyway
You’ve become my light
I cross my heart that’s in your hands
With hope that you will always be my best friend
I promise I will be there ’til the end
You’ve become my light
Under the light you shine on me
I promise I will be there for you baby
I’d never wanna leave you anyway
You’ve become my light
I cross my heart that’s in your hands
With hope that you will always be my best friend
I promise I will be there ’til the end
You’ve become my light
You’ve become my light
You’ve become my light ...
I’m a fan of many Godsmack songs, and this is their lead singer, Sully Erna, playing piano and singing a beautiful song named Until Then. (With Irina Chirkova playing the cello.) A few lyrics:
Lie
Awake
Watching you run through my head
I’m alone again, but not for long my friend
We face another day
And distance has come and taken you far away again
But I’ll see you soon my friend
And then I’ll sing you my song
I can’t go home alone again
No I can’t
My friend
Until then
Eyes, I recognize
Taking me back
Familiar to me from some other time
Or maybe another life
Remember our times, and know who I am
The memory stays, until we can breathe as one again
And I’m coming back my friend
And then I’ll sing you my song
And I can’t go home alone again
No I can’t go home all alone again
No I can’t go home all alone again
No I can’t
My friend
Until then
“Every wall is a door.”
~ Ralph Waldo Emerson (also, the Kool-Aid Man)
The name Homer on The OA reminded me that my uncle was named Elmer, but we knew him as Uncle Mousey. He was a famous jazz drummer, and he called everyone Cat or Cool Cat. When he visited, my dad made him smoke his special, hand-rolled cigarettes outside (and often joined him). Here’s a short video of him on the drums with some other cool cats. :)
(Men in the Alexander clan don’t live long. He passed away at 66, my dad died younger than that, and their other brother — who was a favorite cool cat — died in his 40s. I assume complications related to mast cell disease was involved in there.)
