Update: It’s Good!

Had an MRI this morning— the first one I’ve had since my 3rd(!) brain surgery, on June 24th. I like to try really hard not to worry too much or nervously anticipate these eight-week brain parole hearings, since they come at a relatively frequent clip, and will very likely go on for the rest of my life. I would rather spend the 59 days between MRIs working and writing and doing things I enjoy (like going down the shore with my family for a few days, which I just did, and enjoyed very, very much) rather than worrying about something that’s for the most part entirely out of my control. But this was the first one since that recent surgery, so I was “anticipating” this one… looking forward to seeing how well the tumor removal “took.”

Turns out it took pretty damn well. Doctor C.P. the Brain Surgeon (no relation, despite the identical initials) did a nice little number on me brains, and so in addition to feeling and looking relatively healthy at the moment, it appears that I am relatively healthy at the moment. So that’s good. That’s something to hang your hat on. For at least two more months, at least.

So to celebrate, I’m going to spare you my typical existential meanderings this time in favor of a regular old-fashioned medical update post, which is what this blog was supposed to be for in the first place, before my head started to get all (figuratively, artistically) swollen. So here goes:

• The MRI results looked good! Dr. Hu actually used the word “wonderful” to describe them. Which I found to be a bit highfalutin’, but hey it’s my brains he’s talking about, so I should take a “wonderful” and go home happy. Which is what I did.

• The area where the tumor had reappeared a few months ago looks nice and clean now, nothing more than a black hole (filled with cerebralspinal fluid, as opposed to infinitely dense matter).  This is all completely safe, in case you were wondering. All the useful brains are still there, just a little compressed and smooshed off to the side. They’ll be able to stretch back out into the hole if they want to, but there’s no harm if they decide to stay as-is.  Strange, but true.

• Here is a picture of the MRI scan itself. On the right you can see the image that was taken today, compared with the image (on the left) of my brain pre-surgery, back in June…
August 2014 MRI

 

• The angle of the two scans is a little different, but generally speaking what you’re looking for is the area in the center left side of the head.  On the left (June) MRI, you can see a little white nose-shaped blob.  That was Cancer!  And now, on the right, you just see a clean black hole in me brains where the Cancer! no longer is.

• So that’s great.  But keep in mind (as I must, both literally and figuratively) that the cancer was there the whole time– even during the last year when my scans were looking great– because it DID grow back.  So there was something there.  So there could still be some stuff there now.  Or maybe not.  There’s no way to know, other than the wait-and-see approach.  Which I’ve gotten good at.  The important point to focus on is this: “so far so good.”  And that’s very, very important.  That makes me happy.  That allows me to enjoy everything else around me that has nothing to do with cancer, which is a lot.

• As for TREATMENT, here’s the deal:  No more chemo, no more radiation.  For now at least.  No reason to mess with a good thing (other than cracking my skull open for a fourth time if it grows back again in the same relatively accessible place).   But this 3rd surgery did a nice little number on the re-growing tumor cells, and who knows, maybe they won’t grow back at all now.  Or maybe they will.  This is what I’m living with.  But I’m living.  Well.  That’s what matters.

• THE CLINICAL TRIAL:  The only treatment I am doing now, is another clinical trial.  This is called “Neurosphere,” (talk about high-falutin’), and is basically very similar to the clinical trail I did before.  It’s a vaccine therapy, intended to train my own immune system to recognize and destroy any remaining brain cancer cells.  This particular trial is brand new, and is being developed at my hospital (Cedars Sinai– a quick 4 mile jog from my house).   I am phenomenally lucky to be able to be a part of it.  Even if it does nothing.  It’s an option–  and options are in short supply when you have this type of brain cancer.  So hooray for the Neurosphere!  Oh and this trial is a Phase 1 trial, which means (among other things) that there are no placebos.  I’m definitely getting something.  And hopefully it does something.  Either way, it has no adverse side effects, so again…. lucky.  Lucky lucky lucky.  All I get is a few shots in the armpit (yes, they kinda suck) and boom, that’s it.  I get to (maybe) live longer.  Maybe a couple months.  Maybe years.  Who knows.  We’ll find out.

• HOW AM I FEELING?  I am feeling relatively well.  Quite Cancerful, thank you very much.  I’m mostly recovered from the surgery, and the chemo brain seems to still be steadily (if slowly) improving.  I am still slightly less than I was before all of this happened, but probably mostly in ways that only I notice.  My memory is soft, I lose my words more often than I’d like to, and I get randomly tired and have learned to pace myself and take naps.  All of this is frustrating for me at times, but I don’t have to remind myself that things could be much, much worse.  This much is obvious to me.  Hence me usually smiling when you see me.  (Unless it’s in the morning.  I still like being grumpy in the morning.  That hasn’t changed.)

IMG_0483

 

• GOING FORWARD: I will get a few more armpit shots, and I will continue with the bi-monthly MRI scans.  Things are calm for now.  Which is great, because I’ve got a lot of work to do.  Such as…

• I’ve been invited to speak at a Brain Tumor Conference at Cedars Sinai next weekend, which is exciting.  I’m not sure what I’m going to talk about yet, but I’ll almost definitely be cracking jokes of questionable taste, handing out Brain Cancer Cards, and trying to raise money to create a Cancer! Foundation, and to make this movie I wrote, both of which I believe very well might have the power to cure cancer.

The BRAIN CANCER CARD

• So that’s it!  For now.  Thanks to everyone for your continued support, here in LA and in PA and all over the damned place.  I’m lucky to have a lot of really nice people in my life, and even luckier to have learned to be a nicer person to (at least most of) them.

And thanks for reading.

See, having brain cancer ain’t all that bad.

Well how d’ya like that!

20 thoughts on “Update: It’s Good!

  1. Hey Chad, very good to hear the positive news, keep it up big man !! 🙂
    Loved the Brain Cancer card can I order some online?
    See you in Berlin soon.

  2. You should try to gather a cheering section at the conference to make a rowdy mess of the whole thing during your talk! That would be awesome.

  3. Chad, you simply AMAZE me. I anxiously follow every word you convey so beautifully and feel so happy and thankful when the tide runs smoothly for you. Please know we’re cheering for you all the way. We’re having a Terry Fox run tomorrow here in Nova Scotia. l’ll be thinking of you, you honorary Newfie

  4. So much of this is well written, helpful, inspiring and so relevant to me personally, I won’t bother making a list here. It would take up too much space. But a few thoughts: I respond to, and think about, some of this cancer-brain-related stuff, the same way you do, and that really helps me feel un-alone (if that’s a word). I look forward (very forward) to MRIs and don’t mind being closed-in for 45 minutes, because it kinda helps my neuro-doc give me the best info she possibly can. I’m calm in that tight, narrow tube. Who woulda thunk it? Like you, in general now, I sleep more (naps) and forget more, but somehow not the stuff in the files, but the labels ON the files (which is much better than the reverse). I’ve met a lot of brain-cancerites — so many terrific people, but only a couple who share many experiences I’ve gone through, as we seem to have. That’s awesome. We both write. I’ve been a journalist (mostly as editor of a nonprofit community newspaper in the Bronx) for almost 20 years and am taking a break from journalism at the moment. I will get back to writing and journalism in some form (I can’t wait to learn more about your creative work, though I already have learned a lot in this blog) but right now I’m focusing on things I’ve wanted to do but haven’t achieved — getting really good at the blues harmonica, spending more time with my 10-yr-old daughter, taking a class to learn Spanish, which I just started, since it is spoken all around me in the Bronx. If I could reverse that crazy seizure I had almost exactly 2 years ago (surgery was 2 months later), I would, but there are times of day that I see of the benefits — things I’m doing and will do that I would of never done. You’re writing has helped me maintain and expand those feelings. Your BrainChancery is realistic, creative and inspiring. I know you’ll keep at it, so no need for me to assign you anything. And ignore my intro to this ramble … I did make a list after all. It’s the most writing about what I’m going through that I think I’ve done, and whether it needs an edit or not, that just makes me feel good. Thanks a ton for all you think and write, Chad. Best, Jordan

    • I’m going in for my 3rd brain surgery tomorrow, and you’ve inspired me to think I’m cool. I don’t jog, so instead I got a new choppy haircut and washed all the grey right out of my hair so that I’d look good going into surgery and lazing around in the hospital. I plan (just deleted the word “hope”) to have my thumb firmly pointing up sometime in the next couple of days with a neon “success” flashing above me. You’ve given me the visuals…..including a clean brain. thank you for that…

  5. Reading your journey has helped me to move forward with a more positive outlook. My daughter is 36 and also has brain cancer. She has been battling this disease for the past five and a half years. She is a true warrior and an inspiration to all around her. She is a patient at Cedars and in the best of hands. On Tuesday, she is going to have the same procedure you speak of in your blog. She is positive and brave and so, we follow her lead and are strong and hopeful. She’s already had the trial injections, surgery and more of chemo and radiation.
    I hope that your journey is continuing to bring you positive results and allowing you to enjoy and live in the moment. That’s all anyone can hope for ….. Thank you for sharing your story.

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