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Update: 2018

Well I have to admit this brain slug is a persistent son of a bitch.

I recently had my latest MRI and the doctor didn’t notice any changes, positive or negative, from my previous scan. Definitely not the result I was hoping for but absolutely better than the alternative. Also, this isn't the first time the MRI hasn't shown any changes so I’m not as worried as I was the previous times.

I just have to keep up on my health regimen that has gotten me this far and keep striving for some semblance of a normal life. If I’ve learned anything through all of this is that persistence is key.

At this point, I plan on enjoying life as best I can and hope to see many more friends and family this year now that I’m doing much better than the previous few years.

I hope everyone has a wonderful start to 2018. Make it a year worth remembering!

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Progress...

Finally! This brain slug that has decided to attach to my brain stem has appreciably shrunk.

Instead of guessing how much it shrunk, I figured it would just be easier to show you. So for your viewing pleasure I present the images of MRI results below.

So what are you looking at? Well that blob that is lit up like a Christmas tree is the tumor. The top row of images are from my scan in April and the bottom row of images are from my scan last Friday. As for a brief primer on how MRI images work; the machine takes images or slices of your brain both vertically and horizontally. You look at the set of images is as if you’re looking down at head with my face toward the top of the page. Hopefully that helps orient how you look at the images and I didn’t completely butcher that explanation.

Hurrah! What now? Well it’s pretty satisfying knowing that everything I’ve been doing is finally being validated in the images. Really I just need to keep doing everything I’m doing and perhaps I’ll be fortunate enough to continue to see results. Also, my MRI moves to every 6 months instead of every 3 months, which is standard process after 2 years without clinical progression. I would be lying if I said moving to every 6 months doesn’t make me hesitate a little but as mentally reassuring as every 3 months is, moving to every 6 months is step in the right direction.

Until next time, keep on keepin’ on.

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2 years on...

I can’t believe it’s been almost two years since I was first diagnosed. I’ve definitely come a long way from the worst side effects/symptoms but I still have lingering impairments that may or may not get better over time. Specifically, I still have substantial muscle tension in my neck and nerve pain throughout my skull which makes my ataxia and dysarthria more pronounced. As much as it would be convenient to bitch about being in constant discomfort and pain for two years, I cannot express how grateful I am to be able to improve as much as I have.

Now for the business at hand. I had my quarterly MRI scan on Monday and there weren’t any changes from the last scan. So no earth shattering news either way but I figured I’d shoot out an update since it’s been a while. Also, I finally had an MRI of my C-spine to see if the doctors can find anything and suggest treatments to provide some relief… fingers crossed.

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Results: 15 Months

Well I had my usual 3 month MRI on Monday and … there weren’t any noticeable changes from the last scan. Definitely not what I was expecting but what do they say, “no news is good news.”

Either way I seem to be progressing in a positive direction albeit at what seems like a snails pace. I’ve graduated from the walker or cane to a walking stick. My gait is by no means fluid all the time but it’s not a bad place to be since I wasn’t able to walk at the beginning of the year. Also, after 8 months, I’ve finally been able to get off all my pharmaceuticals. I still, at times, have what feels like withdrawal symptoms but it’s not nearly as bad as when I was tapering. Speaking of the word “tapering,” I’m unbelievably happy that I no longer have to say that word.

Other than that, my neck is still messed up and I can’t talk for shit but I just have to keep rolling with the punches. Until next time, keep on keeping on.

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Results: 1 year

Well I have good news and not so bad news, which do you want first? The good news? My thoughts exactly... screw beating around the bush. My tumor shrunk again! It's hard to put a percentage on how much it shrunk but it looks about 50% smaller than my original scan. This estimate might be generous but it is definitely noticeably smaller. Now for the not so bad news. I had a panic attack last Friday which landed me in the ER again. Since I already do everything I can to stay relaxed (meditation, yoga, exercise, massage & acupuncture), I was given two options to control the panic attacks: 1) an anti-depressant 2) see a therapist to "talk." The pharmaceuticals I've been on since this all started have really fucked with me over the long term so naturally I picked number two. Everyone knows I love to talk about my feelings so this should be interesting. As a general update, I still have a bunch of symptoms like tension headaches, shaking, impaired speech, etc. but they are slowly becoming milder and getting off the Ativan should help. I have a month left until I'm finished tapering off Ativan. After that, I won't have to taper off any more pharmaceuticals. After trying to taper off my meds for over a year, I'll finally be done. It is unbelievably satisfying to be so close to the end. Until my next update, keep on keepin' on.

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Results: 9 months

It has been a year since my diagnosis and 9 months since my treatment ended. It’s crazy how much time has passed and the ups and downs of the past year. Well finally … FINALLY … I have some good news to share. I had an MRI yesterday and it showed some shrinkage. It might have shrunk about 25%. It’s hard to put a total percentage on it but every image showed some shrinkage. Some images showed greater than 25%; some images showed less than 25%.

I’ve thrown the kitchen sink at this thing … supplements, diet, exercise, radiation, cannabis, meditation. I’m not quite sure what is working but happy something is.

Also, I’m finally off the steroid medication which provided a bit of relief from some side effects. Unfortunately I now have to deal with a low platelet count. They think my spleen is inflamed which is why my platelets are low and causing the issues with my left side. It should be an easier issue to deal with but we will see what the doctor says on Thursday.

Thank you to everybody that has been sending positive vibes, prayers, etc. my way. There’s still a lot of work to do with relearning how to walk and talk but I’ll get back to a semblance of normalcy with everyone’s support. Love you all ❤️

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Update: End of therapy

This week marks the end of speech, OT and PT therapies. It has been a huge pain in the ass to relearn how to speak, walk, etc. The best analogy I’ve been able to come up with is it’s like driving a Ferrari down a road that is under construction. You know what the car is capable of but you’re limited in some way.

In any case, my therapists have been amazing to work with. I can’t express how grateful I am for all the hard work they’ve put in. Without them, I would still be confined to a chair and not able to speak. There is still a shit ton of work to do to get back to speaking normally, walking without a cane, etc. but these women have started me on the right path.

I’m still working on the steroid taper but will get off soon. I just have to go through one more taper before I can finally stop taking it. This stuff is a motherfucker to get off (i.e. withdrawals). I definitely get why some people refuse to take it but supplements seem to help this whole process. A good resource is http://www.lifeextension.com/protocols/cancer/brain-tumor/page-01.

My next MRI is 4/18 so look for a new update that week. ‘Til then, enjoy the spring weather and Happy St. Patricks Day.

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Results: 6 months

How does that old adage go... "Hope for the best, plan for the worst." Well my MRI results from yesterday landed me smack dab in the middle... For the most part. The doctor thinks there might, possibly be a little shrinkage on one side because my scan showed an increase in spinal fluid in my ventricles. Otherwise the tumor is unchanged. Definitely not the best news but it could have been a hell of a lot worse. So what's next? What's the plan of attack? As of right now, the goal is to get my ass moving again. It definitely doesn't do me any good to be confined to sitting all day so I started PT and speech therapy today with OT coming later in the week. As far as the tumor goes, it's a waiting game. I'll have another scan 3 months, but I have to just keep doing what I'm doing and the next scan will show additional shrinkage.

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Long overdue update

I’ve been meaning to write this post for quite some time but my previous physical state afforded me little capacity to do much, let alone write a blog post. Also, I kept telling myself that I’ll write a blog post once I feel better… unfortunately that day didn’t materialize over the past few months. Even as write this right now, I still have a long recovery ahead of me.

I won’t go into details (unless you ask) but I’ve been dealing with a whole host of symptoms the past few months. These include: tremors, convulsions, shaking, headache, muscle weakness, nerve damage, spasms, speech issues, inability to walk, etc. The past few months have included a couple visits to the ER, a couple CT and MRI scans, 4 or 5 failed steroid tapers (I honestly lost track of how many times I’ve tried getting off this shit) and an Avastin treatment. You all probably get the picture by now… the last few months sucked real hard. With all that behind me, I finally have a taper plan to get off the steroids which should help alleviate some symptoms and provide additional relief.

I know I’ve been less than inclined toward visitors or answering messages but hopefully I’ve responded to everyone and will able to take visitors as soon as I’m able to carry on a conversation. One of the many perks/symptoms is my inability to talk without labored breathing. It’s kind of like Darth Vader but without the cool helmet and not as ominous.

This process has been unimaginably difficult and completely surreal but all the positivity and love that has been expressed has sustained me through this rough patch.

I have my 6 month MRI scheduled for January 18th. The doctors say that it usually takes 6 months after treatment to see any changes. Here’s to 2016 starting on a positive note!

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What makes a good life? Lessons from the longest study on happiness.

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Merry Christmas!

Hope everyone has a happy and healthy holiday season.

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It's been a rough 3 months but this IV should finally help me taper off the steroids after 3 failed attempts (at Advocate Lutheran General Hospital)

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My original #mala kept breaking so I had to upgrade. Thanks @tantini21 for the delivery and @3myhres for the recommendation #108 #mala #amethyst #amazonite #ironjasper

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It's been a rough couple months but #casper will add much needed #rest & #relaxation to this #recovery

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Adding the #Up3 to my #recovery arsenal

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Big thanks to Mike and Lynne for sending over tonight's #Maine #seafood #dinner. Just what the doctor ordered! #lobster #newenglandclamchowder #shrimp #stuffedclams #yum