Quit Yer Bitchin’!

Christmas is so commercialized.  People are taking Jesus out of the season and ruining the holiday.  I don’t celebrate because I’m not religious.  I don’t have money to waste on some stupid tradition.  There is too much traffic.  The holidays are too stressful.

SHUT THE FUCK UP!!!

YOU are the ones ruining Christmas!  You’re being an asshole to everyone of us who just wants to have a little fun.

Have you seen the original Miracle on 34th Street?  A major theme of the movie is the over-commercialization of Christmas.  Back then!  That non-commercialized Christmas of your past you so long for?  It didn’t exist!

Now let’s talk about your religious objections.  People celebrated this time of year before Christianity, & Christians celebrate too.  Nobody stole anything, & you don’t have to believe anything to celebrate.  Were traditions incorporated?  Absolutely.  Does it matter?  Hell no.

And all those stresses?  Lighten up.  Unless you have kids, you can opt out of the gift giving and still celebrate.  It’s easy.  You don’t like the parties?  Don’t go.  Please, don’t go & complain & ruin it for everyone.  Don’t like the family gatherings?  Well, unless you don’t like your family, suck it up.  It may be the last time you see some of them.  Which brings me to the major point of writing this…

I almost died recently.  Many times.  I am still struggling with trying to live something close to an active life.  This is the first Christmas in years I am somewhat lucid.  So quit bitching.  I want to enjoy this season.  I want to enjoy this life.  I understand the reason we all should celebrate this time of year.  For those of you who don’t, I’ll explain for you.  We celebrate (regardless of your beliefs on religion), & have celebrated this time of year for a very long time, because we are alive.  Years ago, we knew that a lot of us might not make it to Spring.  When plants withered and died, & it was dark & cold, there was a very real possibility that starvation or exposure would kill the people you loved (or you).  So people celebrated like there was no tomorrow (because for some, there wasn’t many).  But now, with central heating, air conditioning, international transportation of goods, etc… we forget how fragile life is.  We get wrapped up in the day to day.

Life is still fragile!  Winter is still deadly.  So quit worrying about stores wanting to make money.  They’re businesses, of course they will commercialize whatever they can.  You don’t have to play along.  If you don’t like it, don’t shop on Thanksgiving & freak out over Black Friday sales.  Quit worrying about who believes what.   Nobody has or deserves the exclusive rights to celebrate this time of year.  Nobody’s celebration has to step on yours.  So shut the fuck up and celebrate.  Live your life before you die of heart disease, or cancer, or in a car accident on the way to lock yourself in your house to avoid the celebrations everyone else is trying to participate in.

If you don’t want to experience the warmth of the season, if you don’t want to celebrate, quit bitching & let the rest of us do it.

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The Big Blog ‘o Love

“Love is all you need”

I strongly believe this.  I think people get confused on what love actually is, so I think that can cause some problems, but the actual statement holds true if you know what love is, & live up to it.  I’m not sure I understood love until my battle with cancer.  I knew caring.  I knew passion.  I knew intimacy.  I knew affection.  I knew attraction.  All components of love sure, but not love, even all combined.  So what is love (baby don’t hurt me, don’t hurt me…)(sorry, got off track)?  I’m not sure I can do it justice by attempting to define it.  Instead, I will tell you a story of recent events, where love changed everything.

If you read my last post (you must have been very bored), you know that I was having bad stomach issues I was hoping would subside by the time I was due to leave for a trip to Reno, NV with my wife, for her best friend’s wedding and to visit family & friends.  Well, my stomach calmed down (temporarily) but the day before we were due to leave…an infection popped up in my leg, forcing me to stay home and go on a course of two IV antibiotics.  Aside from not getting to go, I would be away from my wife for a week which is not easy for me at all.  Still, I’m a big boy, so I wished her a good time, told her not to worry about me (impossible for her, but I wanted her to enjoy her trip as much as possible), & sent her on her way while I spent the next couple weeks in and out of the clinic getting labs done & my IV changed for home infusions of the stomach killing antibiotics.  At a couple days into her trip, I had a routine clinic where my doctor dropped a bomb on me.  This latest infection was a final straw in a huge pile of concerns that had (unbeknownst to me), been building among my doctors for quite some time.  They told me no case they had ever seen, where it had taken this long to recover, continued recovery.  They said they believed my immune system was likely destroyed by the drugs used to fight the severe Graft verses Host disease from my first stem cell transplant.  My last two bone marrow biopsies had remained flat at 20% & they were certain I was no longer building marrow cells.  They told me, while my wife, my love, my support who had been with me through everything was out of town-they told me I would need a 2nd transplant.  Since I barely survived the first, & my kidneys are far more damaged, I was petrified!  Without my wife there, I was more lost than I’d ever been.  Until I got a hold of her on the phone, I really couldn’t function.  Once I did, it’s not like everything was great, but I was able to breathe again.

After my family was told, I decided to post the news on Facebook.  Immediately I was met with an outpouring of thoughts, prayers, and well, love.  I felt different, like a new found energy was surrounding me, and I was going to take this head on, & win.  Yes, the fear crept in every so often, & then I’d get another message from family or friends, or a call from my wife, & it was gone.

So they began the tests to determine if I was even strong enough for another transplant.  My wife got back in time for the first.  Pulmonary function.  A very exhausting uncomfortable test I always seem to have scheduled during a bout with seasonal allergies.  I was tired, but as predicted, my lung function isn’t bad.  One down.  Then the next…the bone marrow biopsy.  This would be done under conscious sedation because the first two I had were not done under sedation and is pure unnecessary pain.  Unfortunately, this time I had developed quite a resistance to narcotics & it hurt.  Bad.  Not the worst pain, but more than expected.  This would confirm the cancer is still gone, the cells are still all donor cells (that usually doesn’t change after they find they are), & most importantly, that I was not miraculously starting to build more cells after remaining flat the last two tests & months apart, & after a longer period of time of no recovery than my team of highly experienced doctor’s had ever seen.

But it didn’t.  In fact, it confirmed that I had jumped from 20% cells to 60% cells.  A miracle had happened!  I AM recovering.  I will NOT need a second transplant!  And I’m not religious, but I will believe as long as I continue to live (a long, long time) that it was the love from everyone that kickstarted my marrow growth, & spared me the hell of a second transplant.  And I love everyone who sent that love to me right back.  Love has saved my life.  All I need is love.

So here is what love means to me.  Feel free to apply it to your own relationships of any kind.  Love is simply a desire to see the object of your love be as happy as possible, and the actions you take to make that possible.  This fits for romantic love, friendly love, family love, love for animals, anyone you want to be happy and are willing to take action to bring that happiness.  But notice there are two parts to what I said.  It isn’t just the desire that matters.  You MUST take action to attempt to make it happen.  That is loving.  If you claim to love someone and don’t do anything to support their happiness, their growth, their dreams…you don’t love that person.  You may feel for that person, you may have affection for that person, but you don’t love that person.  If you keep someone in a box for your own selfish fear of being alone…that is not love.  Love is doing what you can to make that person happy.  You don’t have to succeed.  You DO have to try!  They won’t always love you back.   You don’t need that.  All you need is love.  Love is all you need.

So love the people you love, love the people who love you.  Let the people who don’t love you go, you don’t need them.

I should be a writer!

So.  I took a quiz on Facebook today that said my career should be a writer.  Apparently that quiz is unaware of my already wildly successful blog here with a readership of up to six whole people.  I also took a vocabulary quiz on there, (I’m sure you know it), that said my vocabulary is in the 99th percentile because I recognized certain words.  Never mind the fact that I never use those words, I just know what they mean.  I don’t think that is a required skill for a good writer.  Who cares what a word means if you never use it?  No, in actuality my vocabulary is more like that of trucker.  I am fond of “bad words” because I have a strong belief that actions, not words, are what are truly offensive.

Time for a rapid change of subject.  Are you ready?  Good.  My stomach has gotten better and I think I’m going to make the Reno trip after all!  I’m very excited, despite the fact that I absolutely hate Reno.  We will spend a couple days in Grass Valley for a wedding so that will be fun.  I also will be picking up the Beastess, so that will be awesome.  (For those unaware, the Beastess is my Jeep Grand Cherokee Limited, that I love like a family member).  It will also be good to see some of my old friends while I’m in town as well as my dad.

Just the fact that I’m able to drive again is really a miracle of modern medicine.  Months ago, I thought it might never happen.  All of the medication and complications from cancer and the transplant made me wonder if I’d ever make it back to this level again, but here I am, so Ha!  Take that cancer, you fucking fuck!  Some people say it gets better everyday, but those people are lying.  The truth is, you get better than worse then a little better then the last time you got better, then worse again, then better but not as better as last time, then worse, then better than last time and so on, but the overall direction is better.

So.  The big question.  Eventually, I WILL get better enough to where even the back steps aren’t so crippling.  When I do, I will want to get off this crappy disability and do something with the rest of what will hopefully be a long and meaningful life.  But what?  Facebook thinks I should be a writer, but if this blog is any indication, Facebook is wrong.  I’d rather be a musician, but I can’t sing, my lyrics suck, and the songs I write are just a little too complicated for my guitar abilities to play all the way through successfully every time.  I love to drum, and have even gotten good at it, but that takes playing with other musicians which is the part of the work I can’t stand.  I just don’t like drugs that much.  So what now?  Part of me wants to be a radiology tech or nurse or something, but I wonder if I would be able to handle knowing that my patients weren’t going to fare as well as I did.  I’m in pain, I’m sick, but I’m getting better so slowly over all.  Some people won’t.  Can I handle that?

Well, the good news, which is really bad news but in this case the silver lining is that I probably won’t be ready to work for a while still, so I’ve got time to figure it out.  In the mean time, I guess I’ll just keep writing My Friday Blog on most days other than Friday, because that’s when I feel good enough to do it.

What do you think I should do?  Feel free to comment or contact me to help me decide the direction of my life.  Do you see how much I trust you, my dear reader(s)?

Man-hating Feminism

Yes, my stomach hurts right now due to continued complications from my transplant.  No, I don’t feel like talking about it today, except to say that while cancer has been the dominant thought running through my brain, us survivors DO occasionally have other thoughts and things they care about.  Today, I’m thinking about women.

No, not in the usual way I think about women, which should not be written about here, but in a way that makes me think perhaps there is more to think about them than the usual way.  It occurs to me that women are more than just sex objects.  Apparently, they have thoughts, feelings, and rights, just like us men.  This is sarcasm, but if one reading this doesn’t know me, it might sound like the same kind of bullshit women hear from men all the time.  I want to talk about that.

Right now I know at least 3 women, whom I consider to be close friends, being treated as second class citizens by the men they claim to love, & who claim to love them.  They are expected to cook dinner, clean the house, take care of kids, and still provide income.  Now, if a partner doesn’t work, & the other does, I can see that, but what makes it acceptable for a man to work and then sit on his ass as soon as he comes home when the woman he claims to love must continue working on the house and taking care of their children after they get off work?  Anyone who expects that of their partner just because they are the man, & traditional gender roles HAD women working in the home and then claims he loves her is lying.  Do you hear that?  He’s lying.  Love is a verb.  He may have feelings for you, but he doesn’t love you.

And God forbid you as a woman are too tired from all this work to be sexually aroused as often as he would like.  You should hear some of the things these guys say about their partners who they claim to love.  Once the sex is less often than he would like, his angel is now a bitch, tease, etc…

So why do I care?  This isn’t my relationship.  As a man, I never have to experience this.  So what’s the big deal?  Well, it’s simple.  I don’t like seeing people mistreated.  It gets to me.  Call me overly empathetic, but it just feels bad.  Here is another reason.  These women I know, being treated that way, some have basically stated that they would leave were it not for children with the partner that mistreats them.  That’s all well and good I suppose, it is important to make sure your kids are provided for…but don’t you see what they are learning?  If boys, they learn it is acceptable to treat women this way, & if girls they learn it is acceptable to put up with it.  There is also the fact that these asshole men make women scared or hesitant to get to know all of us.  We all pay for the actions of a fucked-up few by trying to deal with the baggage created by someone who has been “hurt before”.

Finally I worry about my wife as an innocent woman living amongst these males who have had this kind of sexism reinforced.  I worry she may fall victim to the next hard-up little kid who decides to shoot random women because he can’t get laid and views sex as an obligation women must “give up” to him.  I worry about the predators who would flash her, or worse, physically assault her all based on the fact that society views women as second class citizens, who can’t even make decisions over her own reproductive rights.

Look, I’m a man.  I like women and do treat them as sex objects WHEN HAVING SEX and while realizing this sex object is still a person with feelings and rights.  I won’t apologize for my love of women, I won’t apologize for my fondness for sex, but on behalf of men everywhere, I apologize that so many of us feel entitled to you, superior to you, or possessive of you.

I Look Healthy Now, Good Right?

No second transplant for me!  I’m building blood.  Big time!  I had my central line removed not long ago because I haven’t needed a transfusion in months.  Blood, platelets, doing great.  It has even been a month since my last GCSF shot!  I look healthier, stronger, happier.  If you didn’t know me, you wouldn’t know I was still recovering from complications from my bone marrow transplant, over 19 months ago.

I had emergency surgery about 6 weeks ago.  You see, Hannah and I went on our 2 year wedding anniversary trip after months of feeling great.  We took the train.  The night we got back home, an infection exploded in my right leg.  It swelled to 4 times its usual size, I spiked a 103 fever, and was rushed into the ICU with low vitals.  I was then told I needed to have surgery to confirm I didn’t have necrotizing fasciitis.  I didn’t, but to find out they cut two big chunks of flesh from my legs.  No stitches, just wet to dry dressings to heal from the inside out.  It still isn’t healed.  If I’m in long pants, nobody knows anything is wrong.

Since surgery, I’ve had to go to the hospital in the middle of the night, once by ambulance.  The first time I was dismissed as having panic attacks due to being behind on my medication.  I was sent home, in agony.  The second time, pretty much the same thing, only I chose to leave once it became clear I was being treated like a mental case.  The next day I went to my clinic and my REAL doctors confirmed that my Graft Verses Host Disease of the gut was flaring up again.  I had to have my steroid taper stopped & reversed some.  This is also something you can’t see from the outside.

Okay Josh, so what’s the point?  We get it, you’re sick.  Why rant, what’s the theme?

Well here it is.  Nothing wrong with me is visible to the outside.  If nobody knew any better, I’d look as strong and able-bodied as anyone else.  And that is the problem.

You know those people you make fun of as lazy who take the elevator to the 2ND floor?  That’s me.  You know the young man who sits in the front of the bus and doesn’t offer his seat, seemingly so rude?  That’s me.  You know the guy who walks really slowly you make fun of?  That’s me.  I look fine from the outside.  Hell, I look better than some of you.  You have no idea what I’m going through.  You have no idea how I feel.  Just because I’m not old, grey, & wrinkly.  Just because I don’t use a walker or wheelchair, doesn’t mean I deserve to be judged.

So remember that, the next time you see someone pull into the handicapped spot, put up their placard, and walk into the store looking fine.  They may not be cheating the system.  Remember the next time someone walks slow, they might have to.  Remember the next time they take the elevator, they might not be lazy.

Remember most of all, it is not your place to judge.  You can live the healthiest lifestyle possible and this can still happen to you.  I hope for you that this never happens, but the numbers don’t favor your chances.

So don’t judge what you absolutely don’t know.  You never know when you could be on the other end.

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!

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?