Who Needs A Hand? (Missing the Left)

I’ve long felt that the only thing worse about blogging than the word”blog” itself is blogging  about how long it’s been since you have last blogged.

But now here I am, doing just that. (albeit in a somewhat backhanded way, So I’ll allow it  .  Just this once.)

n the few months since my last post, I’ve actually written down quite a few brain chance notes that I thought I might put on here.  But looking back at them, I saw that most of those notes were mostly just variations on the following:

“I’m tired.”

“I’m sick of being tired.”

But that sounds like complaining,  And I don’t like complaining.  So none of my “ideas” From the last few monthsHave made it onto this blog.  (Lucky for me, and for anyone bothering to read this, Because otherwise it would have just been yet another complain–a–thon-2017.  And we’ve all had enough of that lately. )

But enough interesting developments have occurred just in the last few weeks to make me feel like I really needed to write an update.

So here goes.

I’ll cut to the chase (which I typically am utterly incapable of doing, but right now it is incredibly difficult and complicated for me to type,  so I am going to try to make this as concise as possible.

So here goes… (still meandering around–rather than cutting to–the chase 😉  OK screw it here goes:

A few weeks ago, I had a seizure, at home. (That’s it The chase! But wait, there’s more…)
I only passed out for a few seconds, but when I woke up, the entire left side of my body was completely numb and useless.

Paralyzed, in other words.

  • That was about three weeks ago,And while things have improved quite a bit since then, it is still very difficult for me to type. (as is my fifth craniotomy last summer, my eyesightIs also quite goofy, so thatDoesn’t help.)
    So I am actually writing this using the dictation feature on my laptop. (If there are any strange misspellings typos or other oddities in this post, that is why.)
  • Thank Siri  for letting me still be able to write without using my hands, but… it’s not easy.  (she is a fickle digital assistant),For example, now I have to say things like   “comma” and “new paragraph,” Instead of just typing it super-quickly like I used to.  This kind of messes with the flow of writing, but it works.So I’ll take it,And I’ll try to stop complaining about what a pain in the ass is. (It is a huge pain in the ass.)

So, The reason for the seizure was, as you might have guessed, the Cancerful goings on in my brain.There have been some more developments up there recently, such as:

  • On my last scan about a month ago, We noticed some exciting new Cancerful developments. That is to say, there is some new stuff in my brain(cancer, perhaps)that appears to be…( I will avoid using the word “Spreading,” since”Cancer” and “Spreading”Are together too much of a Ominous cliché,even for me.  And I don’t want to scare anybody––Especially myself.)
  • Wait, where was I?
  • Oh yes:There is some new stuff in my brain, Which might be cancer, that appears to be…creeping” fro my original tumors cavity up into a different part of my brain.And this different part of my brain is the part that controls motor function on my left side. There is also some swelling in that area, which can cause just as much havoc as cancer (#fuckswelling .So when I had that scan, my doctor told me to be aware of potential weakness or loss of feeling on my left side.And then,It happened: I lost everything on my left side.This was mostly a result of the seizure, Which is good in the sense that When this happens, you typically get those functions back relatively quickly.  It’s Probably not permanent ,like damage from a stroke would be. And indeed, three weeksAfter the seizure(3w.A.S.),I am now again able to hold things with my left hand, Which is nice.Buttoning a shirt, however,remains something that is now totally beyond my grasp ( pun very much intended).And tying my shoes?Forget about that.  I have a newfound and profound appreciation and respect for lefties––Particularly my own,who I miss terribly.
  • Because of the results of that last scan, we had already decided that I I would begin a new chemotherapy treatment called Avastin.  Avastin is one of the few chemo treatment options for GBM, And unlike the oral chemo I’ve done before,This one is the old-fashioned kind where you sit in the hospital and get an infusion for an hour, While you watch daytime soap operas. which I had never done before,So that’s fun.
  • And in addition to its cancer– fighting properties, Avastin also can help with brain-swelling problems, so I started it immediately, In the hopes that it might also help with my partial paralysis.  I have had three infusions so far,Without any bad side effects at all. And since my left side feeling and movement is definitely improving, it could very well be helping with that (Remains to be seen what it’s doing with the cancer.)
    I wrote some stuff down the other day that I intended to put on this blog, but I have been dreading the thought of trying to type it up, So it’s been sitting in my notebook since then. But now that I am halfway through this post, And feeling a bit better about the typing– with– my– mouth– thing,I’d like to share it with you. So here goes:  This is what I wrote with my right hand, about a week ago…

I’m restless.Which is a bad combination with exhausted.

This weird cocktail that is my new lifeIs ill – conceived, ill-prepared.(Let’s call it “a  Cancerful,” (Splash of chemo, On the rocks.)

Some sips are so bitter, it stings.

This is one drink that is tough to finish:In addition to its bitterness,It’s too flat ,and it often threatens to lose my attention. (Why bother finishing a drink,if it tastes like shit, and do you know exactly what you’d rather be drinking?)

I often just want to dump it out in the sink…But I am still thirsty, and I have no idea what other kind of drink I could get around here anyway. so I keep at it…

.Keep  writing…

These words themselves are an experiment…Unable to see very well, or use my left hand,I am forced to write differentlyThan I would.

Than I did.

Perhaps this is a good metaphor for my entire life; substitute “do” for ” write”in the sentence above, and you’ve got a good summation of my current situation:

“Forced to do things differently than I would.”

“Than I did.”

But no matter, because it’s the living that’s the thing, right?

For that is what you fight, right?

Right?

No matter that you can no longer drive, nor probably even ride a bike if you tried– Let alone a motorized one– Forget about that Previously favorite part of your life (And somany others like it).

But it’s still life! Right?

Right?

“You’re still alive!” the universe swears, pointing to the several  healthy Last sips still left in your glass–

No matter whether you see That glass as half full, Or half empty… The important thing is whether there is something left in there– Whether they’re are sips still left which you might drink… and if you will taste them…

and if they will taste good to you.

Clearly there are quite a few sips left– Perhaps even a gulp (Depending on how I  ration it.)

And so you reach for the glass with your right hand (the left too unsteady; Unable to grip as tightly as before, you already know)

 And so  you bring the class to your lips, and you drink.

Glancing down with your blurred,unreliable eyes, you see enough to know there is still a good amount to drink in there…

And as the scent of it wafts up to your nose, you can already tell that…

it will taste good.

And it does.

Hours later––Weeks, perhaps– –I want to type all of this up, but I’m wary to even begin; As you would be to dive into even your favorite hobby, with one eye blinded, and one hand tied behind your back.

I don’t want to make a mess of it, after all; and frustrate myself so much that things feel even worse than before…

But I also don’t want to miss the opportunity to show myself thatI  STILL CAN.

I need to see that, even if it’s only with one eye.
i mean, pirates need inspiration too, aye? 😉

Argh, ’tis true.  They do.

And so ,even though
There is no patch on my eye,
No hook on my left hand,

I will still
smile a crooked pirate smile,…

AND IWILL TRY.

For doggedness is probably still in the end,
A Pirate Who Wishes To Sail On’s best friend…

And to those who wait patiently for me by the shore,Perhaps even with a fresh drink for me, Always ready to give me a hand,I thank you.
It is your steady light; your Unwavering presence, that keeps me afloat In these murky waters.

 

 

 

 

 

 

 

 

 

 

23 thoughts on “Who Needs A Hand? (Missing the Left)

  1. Funny…I don’t have time for reading blogs these days, but every once in a while I’ll glance at my feed. And today, there you were! YAY! Glad that your doctors kinda of anticipated your left side misbehaving and even more glad that you are getting some relief. Cheers!

  2. Pretty impressive handless typing- I am so glad to hear from you, and to hear you so clearly in your words.
    I hope Avastin annihilates any cancer cells loose in your brain, and then conquers any swelling with equal dispatch. I hope whatever is in your cup is delicious and that every sip sustains and refreshes you as you find your way forward in the strange land you find yourself in.
    You are always in my thoughts, and I send prayers of peace and ease, and wishes that as you sail on, your rare gift for finding unexpected beauty in scary journeys and unfamiliar horizons brings light and hope, and that you are in the company of those who will button and hold when you cannot.

  3. So glad to “hear” your voice!! Thank you for the post! I use the voice text feature a lot and get some ridiculous mistakes. Sometimes I leave them because they are more interesting than what I was going to say. I so enjoy your metaphors, 🇹🇩. (I typed your name and Siri suggested I use this flag, so there ya go) anyway, your metaphors always stretch me and make me think! Much love, Lisa

  4. Hi
    So glad to see your post as it has been awhile.
    I’m so sorry for the news but as my brother, Tom, would say ” it is what it is.” Always made me smile. I do pray for you and hope that you sense Gods presence even during this mess. I
    Hope that your days can be filled with some
    Happiness and contentment.
    Roxanne

  5. I love hearing from you. It’s been a long time! I know we don’t know each other in the normal sense, but you mean a lot to me. I like knowing you are there with your dry, quirky sense of humor so much like my own. I think of you often and hope you have good days with moments you enjoy. Thank you for taking the time and effort to write.

  6. Your writings are always inspiring and yet at the same time read like a novel.
    I hang on to each word trying as the story unfolds.
    Now for humor stuff- each time you write I think back to French class trying to locate a random country’s flag….always makes me laugh.
    I look forward to your next post/chapter of this novel.
    Mike

  7. Hi Chad,
    It’s wonderful to hear from you again – and hear seems appropriate since your blog post was spoken. 😉
    Best of luck with the Avastin! It should definitely help. And I imagine others have asked you about considering a clinical trial. There are brain cancer trials utilizing immunotherapy that might be appropriate in your case.
    Peace, Marty

  8. How I’ve missed that dry with but steely determination. To be able to hold on to a life that has no resemblance of the life we once knew takes unbelievable strength and courage and shows a zest (and a thirst) for living. May you be rewarded along the way. Take special care.

  9. So glad to read a blog post from you! I guess it would be really to much for Siri to make a rainbow out of words like you have done in prior posts 🙂 There is only so much AI can do. I love your metaphors and I hope your “cup runnith over” . Your words touch many, and you are truly an inspiration!

  10. You are a truly special man and the most adorable pirate I’ve ever seen other than Johnny Depp. Just kidding you’re cuter. I wish everyone could look at life with your attitude because every day offers something new whether big or small good or bad but we live life and that is what counts no matter what. Love you

    Sent from my iPad

    >

  11. It was so good to see a blog from you again. I’m sorry about what you’re going through, but I wanted to remind you of a conversation we had when I first met you. We were at Rachel’s, and I was in a trial with Avastin. We discussed our “new normal”. I had Avastin treatments for six-and-a-half years (yes, years!). It didn’t make the cancer go away, but it did shrink the tumors and it gave me a good quality of life. I’ve been in one treatment after another for over twelve(!) years now. Just keep on keep in’ on! Much love.

  12. Almost everything really wonderful in life is very hard. Here’s to my instincts telling me that your trials have created a powerful springboard to an awe-inspiring future.

  13. Thank you as always for sharing…I don’t always comment but am always moved by your honesty and your great sense of humour (I used to say I had to keep my sense of tumour! Much love for many more sips and may they be sweeter than the recent ones xx

  14. I have been following your blog for quite some time. I haven’t met you but feel close to you because of our somewhat shared circumstances. I know second hand the hurt, pain, exhaustion and worry caused by this kind of cancer. The day before you wrote this the beast in my wife’s head pushed her into eternity. After me and the kids told her it was “ok” with her big brown eyes staring at us her breaths got fewer and farther between. i believe that the moment she drew her last breath she was cancer free and in the presence of her Savior! (Revelation 21:4) I don’t know if you or your readers are “religious” people ..I’m not a religious person but I do believe that the only true healing for this monster we call GBM is through Jesus Christ our savior. Essentially my wife did the resection, radiation and temodar then polio virus trial at Duke,then avastin, then CCNU and then cpt-11. She lived for 21 months and was the most beautiful woman I have ever seen in my life. If you want to see her journey google or facebook Wendy Alpaugh. Hang in there and don’t forget that we can throw all our worries on Him because he cares for us ( I Peter 5:7 ) and that our hope is in Him https://www.youtube.com/watch?v=cjetZn5lrBc I’m not sure if you have ever heard of Cheryl Broyles but she is a long term GBM survivor and her story is very inspiring as well. http://www.cherylbroyles-gbm.com/ she has been fighting it for 16 years! Take care Chad!

  15. I started reading your blog in February (2017) after my own craniotomy – and I have to say you are an amazing writer. I love your humor and your determination. I love that you keep things real while keeping a positive outlook. I ended up going back to the beginning of your story and it gives me hope and a place to acknowledge my own feelings about this whole “brain chance” thing. I’m sure you already know, but you have touched and inspired many people who read your blog, probably most of whom are complete strangers. I was very glad to see this post after the pause…I had been hoping that you were doing alright. I’m sorry to hear that things have been even more challenging for you and I will continue to hope for the best for you! Thank you for continuing your writing even when I’m sure it’s very difficult. It means a lot to your readers.
    ~Fellow “brain chance” friend.

  16. I look at you and wonder where you get the strength to take the lump of coal that you’re dealt and write something warm and tender from it. You wrote such beautiful poems and writings even when you were a kid, when you were not old enough to understand the impact you had on your teachers and school mates and family. I hold them in my heart. And, life continues and so do you. That elixir to write and give us hope and joy will be your legacy. The Loving Book of Chad…that’s what I call it.

  17. On Monday of this week I found out that I have a tumor that has both a hard 4cm center, and a infiltrative flare of what I can only imagine is cancer spanning both lobes of the front of my brain. I have an almost two year old daughter, it’s terrible timing. We’ll find out more on 7/12/17 when I have surgery.

    I just wanted you to know that I appreciate that you keep blogging. I’m sure it’s incredibly difficult, but I’ve taken a lot of comfort that you’re still here and continuing on. In many ways I wish I didn’t know what’s ahead of me, but in the long run I’m hoping it will help me prepare. Thank you for being an awesome person that has kicked cancers ass for a relatively long time. Thank you for being honest and real. And for doggedly chasing life… and inspiring so many. I hope that I can have as much luck as you’ve had with this, even though I’m sure it doesn’t feel like luck every single day. I wish you well, and hope to read more soon.

    I don’t know if this will help at all, but a quote by Eckhart Tolle is currently helping me stay positive (or at least less sad): True freedom and the end of suffering is living such a way as if you had completely chosen whatever you feel or experience at this moment. This inner alignment with Now (the present moment) is the end of suffering.

    Hopefully that wasn’t too annoying for you to read, and makes a little bit of sense.

  18. Oh Chad, you are lovely. I hope you have the chance to read this (or for someone to read this to you) amidst infusions and appointments, and plenty of medical goodness.

    I am a BT survivor too, and your last post made me tear up and really resonated with me. Thank you so much for your words of wisdom and thoughtfully snarky blog.

    Let me know if you ever find yourself in the San Francisco Bay Area….

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