If you believed in fairy tales,

Then I’m sorry to be the one to take that from you.  It seems a lot of the wonderful people I’ve surrounded myself since my diagnosis must have believed in fairy tales or happy endings or that the kid writing the story always gets better because otherwise-well it just wouldn’t be fair would it?  And life is supposed to be fair!  Do good things and good things will happen!  Karma is real!  And then you learn about the millions of children who get their first breath before dying, the disease, hunger, and war we allow to proliferate that kills millions more.  Children.  Justifiably killed for living in the wrong place.

Okay, so alright Mr. Gloomy, why then should you survive this leukemia, or myelodisplastic  syndrome, or whatever the monstrous thing has become…why should YOU survive it?

Good question.  Because I’m nice?  Because I try not to immediately shatter people’s innocent belief’s in fairy tales and the like?  Because I use proper manners except while driving but believe strongly that passes are issued for misbehaving while driving?  Because I live in the right hemisphere?  (Which is the left when viewing it on a map).

Nope.

bunny

 

She is the reason I deserve to beat this.  This beautiful woman has watched my hair fall out twice, has picked me up every time I’ve fallen, has heard doctors give numbers as high as 90 and as low as 30, has made sure that the medications I needed were administered in a timely manner, has administered many of those medications herself, has cooked for me has cleaned for me and has even cleaned up after me after a very bad course had its effects on me.

And now as they tell me I’ll need a second transplant and I start questioning whether or not I can survive a second one, she is right there to tell them to get it right this time.

She is making a last-minute friend/family visit and I love and miss her so much.

When she returns, pray the doctors have good news for her.  She may look like an innocent little bunny, but believe me, she is my whole reason I’ve gotten as far as a have.  It is hard to give up when you have that beautiful angel by your side DEMANDING you make it!

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What’s Going on?

I got my transplant months ago now.  My counts climbed up and I got to be out of the hospital for a few weeks.  I was having to spend most of my days at the clinic, but got to spend some time out in the world.  There has been a lot of complications along the way, but everything seemed to be on track.  I was looking forward to an almost normal life.  I had a bout with Graft Versus Host Disease, but seemed to have come out on top.  Then I got hit with CMV.  CMV is a virus that lives in about 80% of people but does not really affect you until you are weak in the immune system.  Since they had to purposely make my immune system weak in order to keep me from rejecting the donor cells, it allowed the CMV to attack.  In order to treat the CMV, I was put on a drug called Ganciclovir.  Ganciclovir fights CMV, but suppresses blood cell counts.  My counts fell to the point that I am once again without sufficient cells to fight other infections, and I now have a nasty Staph infection in my shoulder providing me constant pain.  A different medication is usually used for fighting the CMV, but my kidney function was too low to use it according to some of my doctors.  That medication does not suppress blood counts.  I am being switched to that medication today, because my kidney function has improved.  The problem is that this may be too late.  My doctors tell me my graft is failing.  There is hope that the change in medication may save it, but it is pretty wishful thinking at this point.  They may opt to do an infusion of white cells that remain from the donor to see if that boosts the graft or restarts one, but with the failure of this graft, they seem to think it is unlikely that will work.  It looks like I may be headed for a second transplant, but that would be using cord blood which is less of a match than my donor cells were, and the chances of that taking are no better.  I’m also not certain my body can handle the process again.  

So all this seems like it isn’t going to work, but it is.  I am going to recover with this graft.  It is not beyond recovery because the counts actually took at first.  Getting the Ganciclovir out of my system will allow my counts to recover fully.  Do you know how I know this?  It is because I have a great support system in all of you helping me fight this with your thoughts and prayers.  I’m not giving up.  That is what’s going on with me, what’s going on with you?

T-3

So, three days until the transplant.  Right now my stomach is killing me from the chemo.  I’m only halfway through that, and the effects will be felt for much longer.  I am so bored in this hospital room during the day.  Everyone is working or whatever and there is nothing to do. For some of my friends who are under the illusion that once I get the transplant, everything becomes hunky-dory, I would just like to clarify that is not the case,  The transplant means that I MIGHT get the chance to survive longer term.  This is IF the new cells engraft with no real complications and from about a year afterward I continue to avoid some infection as my immune system will be weak for at least that long.  The odds of that aren’t great, but I’m doing my best to think positively.  However, it has kind of pissed me off lately the way people seem to think this struggle is about to end or is anything less than life or death for me, so I thought I’d clarify.  

I miss being able to go out in public.  Life in a hospital room is not much of a life.  It is only for the hope of better things to come that I bother fighting through this sickness and pain.  That and I owe it to the people who have been by my side in all of this.   Especially Hannah, she has sacrificed so much to be with me through this, and I really doubt I’d be sane were it not for her.  If everyone could be like her, this world would be so much better of a place.  

I know I probably sound pretty negative and bitter right now, and I’m sorry for that, but this is not some illness I can simply manage.  I don’t want to die.  So my choices are to fight as hard as I can or let go and die.  I’m tired,  Not giving up, just letting certain people know that when they act like this is nothing around me, it doesn’t help, it makes me feel worse.  I bet they wouldn’t say some of the things they have in my position.  I get people want to see me remain strong, and I’m trying, but I think being allowed to show a little weakness in the face of this should be allowed.  Are you currently thinking about how it would hit your loved ones if you didn’t wake up tomorrow?  Are you wondering if you should give a family member your Facebook password so they can contact your friends to let you know the worst?  I think about these things daily.  

I’m going to make it  Three days until transplant, one year after that to become normal-ish again.  I have no choice.  Bu don’t you dare, ever think that because this MAY cure me if all goes well, that I have it easy.  Don’t ever think that I’m not allowed to freak out as everything I eat ends up coming out as blood or feeling like it needs to be thrown up.  

Thank you to everyone of you I didn’t need to say that too.  I love you all.

The God Thing

So, since it has come up quite a bit lately, I thought I would go ahead and outline my beliefs for everyone.  Many of my more religious friends have been praying for me since I found out I got sick.  Let me start by making it clear that I really do appreciate all of the prayers, thoughts, vibes, etc…  Despite what I know some of you think, I also believe they make a difference.  Just because we may not have the exact same idea of what or who God is, doesn’t mean that I do not believe sincere prayers can’t help.

But how can this be, you ask?  Well, let me tell you what I do and do not believe.  By the end, I am hoping that you will be able to understand that my beliefs are not a threat to yours, and neither are most of those who also do not share your belief.

I guess the easy way to tell you what I believe is to start by telling you what I do not believe.  I do not believe that books, written on behalf of deities, can be trusted absolutely.  The word of God, filtered through man, would be flawed by man’s imperfections, therefore, do not ever try to quote from a book in order to convince me of what I should or should not believe.  I do not believe that millions of people who believe differently from myself or anyone else are necessarily completely wrong, because I believe we are all wrong in an aspect or two.  And I do not believe we know where we are wrong.  I do not believe that God is short of cash, mister.  I do not believe that God is as actively involved in the day to day goings on here on Earth as most people think.  I think there is free will, I think that some things are part of the plan, but occasionally, I think God can intervene.  I do not believe that the Earth is only 6000 years old.  I do not believe the Earth was created in 7 literal days.  I do not believe that humans have not and do not continue to evolve.

So what do I believe?  Well, put simply, I believe that God is energy.  I believe that energy always has, and always will exist.  I believe in the Big Bang, but I don’t believe that was the beginning.  The energy was there.  Something had to create that first particle.  Something had to cause it to explode.  I believe that something is energy.  And I don’t think anything created it, it always has been there.  It is God.  God is everywhere.  God flows through us at all times.  I believe that energy causes things to happen, but I also believe energy can be manipulated to make things happen.  So fate and free will both exist.  But there are some things one may not be able to change.  Science now has theories that thought can physically manipulate energy.  That a stream of consciousness can actually cause something to happen.  This to me, is why your prayers and thoughts matter to me, even if the God you pray to isn’t the image of what I believe God to be.  I believe that new theories in science regarding infinite alternate universes help to reconcile the concepts of Heaven and Hell, and life after death.  I think it also helps reconcile the beliefs of those people who believe in reincarnation, and the beliefs of those who believe in almost any other life after death concept.  I believe that science will never have all the answers, but that science is the correct method for searching for those answers.  I believe that science has proven itself, since I am typing this on my laptop, made possible only through scientific achievement.  If science disproves my beliefs, I will have to alter them.

I don’t want to die.  I like my life.  On hard days, I may not want to face the world, but I still enjoy being alive.  I am not about to give up things in this life, for the possibility that that things will be better in another.  I try to be a good person.  I am not sadistic, and have a good sense of empathy, so I really don’t think it is all that difficult.  Not to say that I am always a good person, I have been a jerk more than once.  But as long as I keep trying to do the right thing, I’m not particularly concerned.  I don’t need to think that if I’m not a good person that I will burn, or that if I am good I will experience eternal bliss in Heaven to do it.  I try to be a good person because I can put myself in the shoes of who I affect.  But, if my beliefs are right, and my consciousness moves on and the next universe is a happy one, then hey, bonus.  My faith is strong, but only in that I know there is SOMETHING out there we do not yet understand.  My faith in my beliefs as to what that is, is not strong enough to forgo fully enjoying this life in the hopes of experiencing another.

So that is basically what I believe.  I don’t think anyone has the right to be offended by it, just as I am not offended by what you believe.  If you are, and this is all blasphemy to you, tough shit.  I don’t live in Pakistan for a reason.

The End of Optimism?

45 days ago, I checked into this hospital with the intention of kicking the ass of the Acute Myelogenous Leukemia that I was diagnosed with just 6 days earlier.  I felt like I really didn’t have a choice.  It was either do that, or live out another couple weeks to months, each day with less energy and unable to make it as long on my feet.  I had no intention of checking into a hospital, only to never leave.  I was doing pretty good believing the doctors and convincing myself that wasn’t going to happen.  I would be out in 4 weeks or less, because my age suggested no complications.  At that point I would have a little time at home before consulting to see if a Bone Marrow or Stem Cell Transplant would be necessary, or if consolidation chemotherapy would work for me.

Day 14 after the end of chemo, and I have a Bone Marrow Biopsy/Aspiration to look for Leukemic cells.  And the results come back.  There is no evidence of disease!  Can’t get better than that!  And I’m on my way to destroying this thing.  My blood counts are low, I’m feeling a little off, worried about getting an infection and basically self-ban visitors, but my spirits are high as I wait for my counts to return.

And a week goes by, could start any day.  One doctor suggests I could be going home on day 25.

And another week goes by.  Nothing.

And into another week.  Another Bone Marrow Biopsy/Aspiration is done, this one with Flow Cytometry.  Still no evidence of Leukemia, but basically no evidence of any cells at all.  Doctors expect them to climb.

And into another week.  Doctors bring up that maybe the dose of chemo I was able to get because of my age and over all health might be delaying the recovery.  That theory lasts a few days.  Then the doctors suggest that perhaps there still is Leukemia that just isn’t showing up because all cell counts are so low, that may be interfering with bringing up my blood counts.  Apparently, their tests are not sophisticated enough here to make sure that those negative results were truly negative.  I am told that in Seattle they can run a test with certainty that would show any even with very, very few cells available.  While all this is going on, I am told by my doctor that he has consulted with a doctor in Seattle and I definitely need a bone marrow transplant.  He also said that if my counts do not come back up it would not be that big of a deal because they would just be wiping them out for the transplant anyway.  Okay, not the news I wanted, as transplants are rather scary things, but let’s get moving on it if that’s what must be done.  My spirits while somewhat frayed, remain intact.

So Monday, I have a large amount of blood drawn for HLA testing (among other tests, obviously) and sent to Seattle.  This was all from an order created Friday by a doctor up in the transplant center I will likely be having this procedure done at.  So on Monday, I give my brother and sister the number to the testing people in Seattle, so they can get their own testing started.  And here is the beginning of the end of my optimism.  (Don’t get me wrong, I have had my share of bad days along the way, but always managed to pull out of them.)  My brother is asked if my insurance has pre-approved the testing.  He is also asked what specific type of testing was ordered, where the testing would be done, all things that should have been in the order on Friday.  I call my doctor’s office from the hospital and ask them to find out what the f_ck is going on.  I get a call back from my doctor telling me that I should have them wait until Wednesday, because, even though the order was done Friday, they would not yet have me in the “system”.  So on Wednesday, my brother calls and finds out that I am in the system and that the order for them to be typed is in there.  Not only that, but it is a rush order.  Great!  Well, no.  Because they won’t test until they receive authorization from my insurance company, which can take 2 weeks.  2 more weeks of my counts at bottom.  2 weeks of my immune system being comprised exclusively of antibiotics.  2 more weeks of languishing in a hospital room.

And here’s the kicker.  Everyday, something seems to get a little worse.  So far, since my counts have been at or near zero, I have had nightly fevers.  Today, I hit 101.1 right around noon.  That is a first and not the kind of first I am looking to have happen.

Make no mistake my friends, even with good insurance, people’s fear of not getting paid and slow processing ability can still kill you.

45 days, heavy chemo, antibiotic side effects, drug cocktails that make an AIDS patient feel bad for me.  I’ve fucking done my part.  I need these assholes to do theirs.  Perhaps if they do so before I get worse and can’t keep up this fight, my optimism will return.  But for now, I am in realism mode, and the reality is that red tape may kill me.

If you want to talk to me about how important it is to keep a positive attitude, try walking in my shoes right now.  I don’t like feeling negative.  I know it doesn’t help.  But you’re not shivering from fevers when it is 75 in your room.  You aren’t the one sleeping 4 hours a night maximum, and all of that broken.  You aren’t the one who knows that without additional treatment, relapse is inevitable.  You aren’t the one who swears you can feel it coming back.

If you were looking for inspiration in this post, I’m sorry it isn’t here.  I just wanted to let anyone who cares know what is going on.  I hope to post some more.  Maybe those will be with good news.  Guess that last sentence is sort of optimistic, right?

A Helpful Guide to Acute Myelogenous Leukemia

Okay fine, it is Sunday, not Friday.  Sue me.

So as you may or may not be aware, on July 24th of this year, I was diagnosed with Acute Myelogenous Leukemia, (or fucking piece of shit AML, for short).  Because of the nature of this cancer, it is important to start treatment as soon as possible.  So I did.  On July 30th, I was admitted to St. Mary’s hospital to begin my Induction.

Induction:  In the world of fucking piece of shit AML, Induction is when you get a dose of a couple of chemotherapy drugs, (one lasting 3 days, the other a week).  The doses are massive, the clinical term is “a shit ton”.  The effect of this chemo is that the cells in your bone marrow, both cancerous and healthy, are wiped out.  The chemo is fairly tolerable, but once it works…

Nadir:  The period in fucking piece of shit AML treatment when your blood cell counts are 0 (without the aid of transfusion).  Some believe this term was named after the doctor who pioneered treatment for fucking piece of shit AML, but in reality, it was a misspelled attempt at naming the term after Ralph Nader, who always got low counts.  This is the part of Leukemia induction treatment that really kicks your butt.  Your white cell count is down to 0.  You have no protection from infection.  You will get a fever.  Then chills.  Then another fever.  Then a high fever.  Then the infectious disease specialists will get called in and will really make your life hell.

Infectious Disease Specialists:  Doctors and a couple nurse practitioners who are programmed to run the same tests over and over, reaching the same results, with little regard to the health and well being of the patient.

You will get stabbed at 4 in the morning, even though you have a line to take blood from, so they can run cultures to make sure you don’t have sepsis.  It will come back negative.  They will put you on IV antibiotics that all have side effects.  You will have another fever.  They will send you down for a two view chest x-ray.  The chest x-ray will come back negative,  They will not stab you at 4 that morning.  The will tell you they can’t find an organism that is causing your fevers.  The next day, you will have another fever, but one that is much smaller than previous.  They will stab you again at 4 in the morning.  The person who stabs you that night does do literally and bruises the hell out of you in her 4 attempts at digging into your vein.  The culture will come back negative.  They will have you on 4 different kind of antibiotics.  They will get a stool sample.  It will come back negative.  They will get a urine sample, it will come back negative.

Somewhere in this, you discuss with one of the nurses that you probably wouldn’t be running fevers if you were actually left alone to sleep more than an hour at a time.  She offers you ambien.  You are so desperate for sleep, you reluctantly accept.

You wake up the next day feeling great.  The infectious disease doctor comes in just as you first sat up to eat breakfast.  She listens to your lungs.  She says you have decreased lung function on one side.  She tells you she thinks you have pneumonia.  You get another two view chest x-ray.  They tell you that if you get a fever they will need to re-culture you and you are not looking forward to being stabbed at 4 in the morning, when you feel better, and the first two didn’t find anything anyway.  You get a breathing tester machine.  Within a couple tries, you max it out.  You don’t run a fever all day.  Then, just after 5, they take your temperature.  You are feeling fine, but it shows a 100.5.  You know you are going to be needlessly stabbed again.  At shift change, the night nurse comes in to check your vitals.  When she puts the pulse/ox sensor on your finger, it shows you have a heart rate of 228.  This is the same machine with the thermometer that read 100.5.  You tell the night nurse you thought that was wrong too.  She brings the portable thermometer.  You are at 98.2.  You have won your first battle in the long war against the infectious disease doctors, but you know victory is short lived.  Any fever for any reason and they will stab and culture as much as they can.  It is their purpose, test, test, test.

So what is left?  Well, another 2 weeks or so of very low white counts, which means another 2 weeks or so of antibiotics.  After that you will have about a month off before you either come back for consolidation therapy or go to get a stem cell transplant.

Consolidation Therapy:  Chemotherapy given over 4-6 rounds after initial remission to prevent recurrence.

Stem Cell Transplant:  Taking blood stem cells from one person and putting them in another person do the receiving person can rebuild their own healthy marrow.

The last part of this guide is some advice, should you ever find yourself with this diagnosis.

STAY POSITIVE!!!  You can beat every aspect of this and will survive it.  Except the infectious disease doctors, they will most likely win.

Not Down With the Sickness

Okay dear reader(s), decided that I would revamp this little blog-type-thing.  

No more recapping the week, just posting on Fridays.  Seemed like a good idea at the time, ’till I realized that most days were just too boring to mention.  

So, what is new with you?  How have you been?  Is your family doing well?  It’s been so long.

With the pleasantries out of the way, how about we get down to business?

Today I have been thinking about life and death quite a bit.  More specifically, I have been thinking about people who have given up on life, but still live.  A couple of events have triggered this line of thinking.  They are, in no particular order:

  • The tragic shooting in Aurora, CO at the Dark Knight Rises premier, and…
  • The tragic trip I took to Wal Mart today

In case you weren’t aware, I am sick.  I have something going on in my blood and/or bone marrow that is kicking my ass lately.  The results from the sudden surprise bone marrow test last Tuesday are expected back at my next appointment in a couple days, and I am just hoping that whatever they find won’t kill me anytime soon, and that it is something I can fight and win against or at least manage for another 5-7 or so decades.  You see, I like living.  It is hard as fuck most of the time.  I struggle on a daily basis to get through, and if I’m honest, I would say the good times are outnumbered by the bad.  And yet, when it is good, it is sooooo good,  When my bills are paid, it isn’t too hot, I’m behind my drum kit playing, or outside on a beach with Hannah, or hanging out with my friends watching a band, or lying down in bed on a quiet morning, or cracking up with my family on the phone, or going on a little road trip, or a million other little things that make my life worth living, all of the crap I’ve fought through to have those moments seem to be worth it.  

And that makes me ask this question:  What the fuck is wrong with people?!?!?!  

Everyone knows that I despise Reno.  I have gone off about the climate, the dirt, the meth heads, the lack of things to do, pretty much every aspect.  But it wasn’t until I had to go to Wal Mart today (don’t hate, I have medical bills up the Sam’s Club), that I realized the real reason.  With the exception of just a few, this town is full of people who have given up.  Not only have they given up on their community, their sense of responsibility, their hygiene, but they have given up on living.  Yes, people give up everywhere, but not nearly everyone in an entire city.  (not even Detroit)

So I’m at Wal Mart.  Now, for a little background, I get dizzy every time I stand up.  It passes after about a minute, but really sucks.  Also, I get winded walking around a store the size of Wal Mart lately.  So I go in, look for a few items, and decide on a little wood TV tray I will be using as a bedside stand for my cool mist humidifier (CVS, best $30 I ever spent, FYI), and a 12 piece dish set because Hannah has a way of making dishes go boom.  I did not grab a cart as I wasn’t really sure I’d find something that would work.  I pick up the items, with my arms.  It hurt.  I am tired.  My hip muscles still feel like someone hit them with a bat.  My hip bone still feels like someone drilled into it, sucked blood & a core sample of marrow out of it (oh wait, someone did).  But you know what, I COULD do it.  It wasn’t fun.  I took the two items out to the Jeep.  As I am walking toward it, some 700 pound asshole motors by me with a few Little Debbie items sticking out of his bag in the basket of one of those handicapped electric carts to his Ford F98750, which he has to CLIMB up into after he HOPS up out of the electric cart.  No handicapped placard, or license plate on the truck o’ genital compensation.  He is parked in a regular spot, all be it as close as one can get without being handicapped.  He leaves the electric cart sitting there and speeds away.  I have not yet reached the Jeep as I did not circle the lot for an hour looking for the closest spot.  I feel pretty satisfied knowing that I am not that guy.  I don’t NEED the electric carts, I leave them for the people who do.  That guy clearly didn’t need them either.  It is clear he is someone who has just given up.  

So the Colorado guy,  Or should I say the Colorado piece of shit.  He decides he can’t hack it as a PhD candidate, drops out, and decides that the only way he will be remembered is for killing helpless innocents in a packed theater.  Famous for being a hated asshole.  Wow, congratulations asshole.  You win.  The world hates you.  Why, when you decided to give up, did you just not give up all the way and take yourself out?  You didn’t show us anything we haven’t seen before.  You were too weak to make it in society.  A society that will move on after they inject you, by the way.  You little weak ass pussy couldn’t make it in your field of study and so you think you need to show how cool you are by killing people?  And guess what?  You look like a little bitch.  In my weakened state, I am near certain I would fuck you up without your weapons.  So you gave up, good for you.  Wish you would have done it sooner, without hurting all those people and their loved ones, but guess what?  You aren’t the Joker.  You aren’t Bane.  You will either die soon or rot in prison.  No elaborate escapes, no henchman working on your behalf.  No one fears you, they just want a few minutes in a room with you so they can do to you what you should have done to yourself when you made your first attempt at giving up.  

So is this one of those, “life isn’t fair when there are bad people like that and good people suffer” posts?  Nope.  Life never has been fair.  People can suck.  

This post is simple.  I am physically sick.  I am not giving up.  I am going to fight against whatever is going to make me suffer.  I am seeing doctors for help with this.  

People with mental illness need to seek help.  Their friends and families need to help with that.  They can’t give up.  Even if it means giving up one life in order to prevent them from giving up on letting others live.

I may have an illness, but I’m not going to just give up.  When you do, that is when you’re just sick.