RIP Gary Thomas Zullo

Post written by Samantha Zullo (Gary’s wife):

At 7:10am on Friday January 1st, Gary Zullo left us. He ended up in the hospital on Christmas day because he was very dellusional and wasn’t peeing much. Turns out he somehow had pneumonia, sepsis, kidney failure, a bacterial infection in his blood and to top it off a fungal infection in his lungs which according to the doctors is almost always fatal for someone with a compromised immune system. He fought long and he fought HARD to stay alive but ultimately he couldn’t fight any longer and his heart gave up.

Gary has touched sooooooooo many lives in his short 33 years on this earth. He will be missed dearly by so many, but most of all by those that he left behind, his mom, his 2 year old son (Michael), and his wife (Samantha).

Thank you all for following Gary’s blog. He loved writing blog posts because it was his outlet against the thing he hated most, Cancer. Gary always kept things real even with his salty language (as he’d call it). Thanks again for following him throughout his journey.

Love,
Samantha and Michael

Setbacks

Firstly, I hope everyone is gearing up for a fantastic holiday! Nah, scratch that. I hope everyone is gearing up for a Merry Christmas! I am not sure when all the PC retards decided that only the word “holiday’ was acceptable but I am going back to saying Christmas. Don’t like it? TOUGH!

Anywho I hope everyone is in good spirits

I have been on a steady incline to feeling better, until…

About a week or two ago I was beginning to get ridiculous side effects from the remainder of the maintenance doses of Depocyt that I was receiving in my Ommaya port. I had a particularly bad day and did not think I was going to make it through two more doses of the stuff. That’s where my wife stepped in as she always does and called both my doc locally and the NIH. I was having dizzy spells and tunnel vision and lots and lots of neuropathy-related shaking. All of which were leading to falls, low blood pressure and lightheadedness. Fucked up. I got good at anticipating the episodes (as we’re calling them) to the point where I’d get a few days up to maybe a week (if I were lucky) where he actually feels pretty good and then he gets hit by another dose. His local doc prescribed more pills of a steroid (dexamethasone) that he has to take for the first 5 days once he gets a new dose. They usually do not like you taking this med for more than 5 days because it can have nasty side effects, one of which is a stroke (there are many more purely unpleasant side effects). So I’ll be taking that like this:

2 days @ 3 / day
3 days @ 2 / day
3 days @ 1 / day

I had a Depocyt dose on 12/01/09 (my last) and have been having a very VERY difficult time with it. It almost seems like each time I goes through this the symptoms get worse, kinda like they are compounding. We were pretty sure the symptoms were caused by Depocyt treatments and now we are positive (either that and/or neuropathy)

Well, I got a call around 11:45am today from the team up at the NIH. All of the bigwigs were conferenced in just as if I were at my very own doctor’s appointment. We all decided as a group to stop the maintenance chemo which makes last month’s dose my last dose. I will FINALLY get to recover for good!!! Obviously there is risk involved with me stopping it 7 weeks early, but since they are dealing with his brain they just can’t chance things anymore with the severity of his symptoms. Plus my CNS is negative, it won’t be getting any MORE negative; just maintaining 0.

So, long story short … I am still dealing with the symptoms of neuropathy (it’s like I have Parkinson’s now) and the dizziness. Some days it’s worse than others. Today is rough I have NO ENERGY.

To quote my wife’s blog on the same subject, “So I’m so happy to finally announce after a LONG 7 months of this nightmare that my wonderful husband, that has been SUCH a fabulous fighter, is finally done with chemo. May he never need any of that nasty stuff ever again!”

Cancer Reward

Wow! Now that I am done with treatment it seems like I don’t have time for this blogging shit anymore. I am just kidding, but it has been a busy time. I’ve been getting used to not being in treatment, growing hair and dealing with arachnoiditis (because of the depocyt). I decided that as a gift to myself for having survived treatment and cancer that I would buy myself a Gibson Les Paul guitar. I just so happen to play guitar so this would not be a wasted purchase. Were I to buy a purse … that would be a waste

I thought I would post some pics of it (rather tan of me for a change). Please enjoy. FYI, I also bought a Boss GT-10 effects board and a Peavey Vyper-30 amplifier. Now, how’s that for a reward!? Fingerprints courtesy of my son Michael. He likey guitars (or ‘atar as he calls it) Comment dammit!

Fuck you blood!

Well, I just received a call from the lead doctor investigator dude from my treatment protocol. He called with the results of my blood flow cytometry. Everything else is clean and/or negative but my blood still shows signs of malignant cells. This sucks.

His consolation? Before we started the treatment we were at 66%. After 4 rounds of chemotherapy I got down to 30%. Now, I am at 8%. He seems to think that when my immune system is back at full strength (in about 3-6 MONTHS) it may very well irradiate the rest of that 8%. If not, then I wait for the numbers to go back up and start another treatment.

This is never going to end for me I fear

Sorry. Been Busy…

I know it’s been quite awhile since I blogged but I have a good reason I swear…

I’ve been busy trying to recover and live life a little. I’ve been stuck in a cancer/chemotherapy rut for almost 6 months. It has sucked a royal dick; trust me. I cannot remember too many good experiences from my treatment. Let’s just say that in my case, at least, the treatment was FAR worse on my body than the disease itself. However, I’m a stubborn sonofabitch and my will to live is too strong to be taken out by some pussy-assed disease. So, here I be… post-chemo and on the rebound.

I’ve been cleared to return to work which actually makes me VERY happy. I need something constructive to do. Sitting around the house was fun for about 5 days. Now it’s driving me crazy. I need something to do; even if it’s only for a few hours a day for awhile. I need it. You understand? Also, I’ve been trying to get back to ‘normal’ which for me means chores and taking care of my son. While I can’t yet claim that I am back 100% I can tell you that I am actually doing stuff which makes my wife happy I am sure. She’s tired of doing my shit … I would be.

Almost Cancer-Free!!!!!

My family and I went to Disney this past weekend because we needed to 1) get out of the house, 2) get out of town and 3) celebrate two belated birthdays (Mikey turned 2, and mommy turned 30) and an anniversary (our 5th). We really didn’t want to talk about cancer or recovery or anything related to what I just went through. However, on Friday we received a call from the research nurse up at the NIH. I was up there almost three weeks ago for diagnostic testing and re-staging. They did a bone marrow biopsy, tons of blood work and a CT scan.

Megan, the research nurse, called with the best, most-awesome news ever!! She told us that my bone marrow came back NEGATIVE! That means it’s clean and I don’t have Lymphoma in my bone marrow So, currently my cancer status is as follows:

CSF (cerebral spinal fluid): Negative/Clean
Bone marrow: Negative/Clean
Liver: Healed/Clean
Spleen: Healed/Clean
Blood: Still waiting but last flow cytometry came back positive. This does not necessarily mean I have Lymphoma in my blood it just means that at least one lymphocyte was detected. People can have ‘normal’ populations of these cells. Also, my immune system is severely compromised at the moment so when it returns the likelihood that it kills the ‘bad’ cells is high. The fact that my marrow is clean is a HUGE indication that I’ll be cancer free soon!

That was a call I enjoyed from the NIH (for a change)!

Cancer made me a sissy?

I’ve made no secret that I’ve had a hard time time with having cancer and with having to put myself through chemotherapy. It has been a fucking nightmare from start to finish. However, I’ve learned something that I just had to share with you all because 1) it’s informative and 2) it’s funny.

I think cancer turned me into a sissy.

I used to NEVER show emotion, cry, or really get bothered by anything. Now? I cry at the drop of a hat, I tell my wife I love her often (I even made her start doing hug-therapy with me every morning) and that I owe her my life and I LOVE my son. What the fuck? Tee hee.

So, where am I going with this? Well, those of you that really know me know that I used to know all of the members of CREED very well. Politics aside, I am happy they are all doing with they love even in different bands (Scott is solo and everyone else is Alter Bridge…). So, Scott Stapp put out a solo album in 2005 while battling a few of his own problems (alcoholism) and I heard a particular track today. That track fucking blew me away and pretty much stopped whatever I was doing dead in its tracks. Scott’s always had a knack for putting 1000 pounds of emotion into 250 pounds of lyrics. Say what you will about Creed, Alter Bridge or Scott himself but he’s pretty much an awesome song writer. Always has been (Sorry my vagina popped out there). But truth be told … If we’re femming out … Mark’s the man (uuuuber talented)

The name of the song is Surround Me and the lyrics look like this:

They say no man’s an island but I tend to disagree…
I guess they’ve never seen my island,
And where it lies at sea…
I’m lost inside my memory.
I’m still in disbelief.
If I could paint a picture for you this is what you’d see…

I’m down on my knees…
Begging you to rescue me…
Please stop me…
Don’t let me run…
Surround me…Surround me…now

A wounded man sounds desperate when he’s lost all his belief…
Can you look into my eyes and say you won’t betray me…
Where running out of time…
How precious time can be…
I’m counting all the moments of the times you could have helped
me…

I’m down on my knees…
Begging you to rescue me…
Please stop me…
Don’t let me run…
Surround me…Surround me…

I’m down on my knees…
Begging you to rescue me…
Please stop me…
Don’t let me run…
Surround me…Surround me…
Surround me now…
Surround me now…

So, by the end of this song I was doing a Google search for the lyrics, buying the whole album (The Great Divide) on iTunes and sobbing like a 13 year old girl that just got dumped for the first time. Even though the words aren’t cancer-specific they hit home for some reason and I cried (what else is new I guess?). THIS IS HOW I FEEL SOMETIMES. Crazy how that dude can encapsulate an entire experience in less than 500 words. Thanks Scott! You’ve contributed to the pussification of Gary!

Have a listen to the song:

Just an update

Having just gotten off the phone with my research nurse from the NIH I realize I haven’t blogged in a while. Sorry for that. Round 5 has, of course, thrown me a couple of curve balls and I am trying to deal.

Some good news: I have officially been declared as having NO MORE Lymphoma in my spinal fluid!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What does this mean? Well for one, no cancer in my CSF but more importantly I only have one more treatment to my Ommaya, then 4 “maintenance” doses and we’re done. That made me happy because even getting the CSF has been a struggle.

Some meh news: My blood is still positive for Lymphoma. I have not seen the pathology report yet so I don’t know how MUCH (e.g. what the differential is) but it’s still there. There’s still time for this to clear up.

Some bad news: There might be a couple of additional rounds after this next one depending on whether I am ‘clear’ at the end of round 6. They will have to basically do some other treatment to get to zero. if so, I’m not sure I’m up for it to be totally honest.

Other points of note:

• My platelet count is lower than I’ve ever seen it (34)
• My ANC is 40 (wow)
• I needed 3 units of blood this time home
• Appetite is shit (again)
• Starting to react to the Neupogen (went to ER last night; felt like both legs were shot with deer slugs)
• Demerol rules!

I’ll report back when I see the pathology report. I’m not losing hope yet biatches ……

Oooof what a day!

As with any continuing cycle of chemotherapy treatments you go in with a set of expectations of what you need to get done to be on your merry little way home and what not (to find your new ‘normal’). As with each cycle *something* always fucks up and you never quite get that “ah this went perfectly” feeling before you start contending with the chemicals, ugh ….the chemicals.

Today was no exception; that’s fo’ sho’.

Here was my schedule of procedures all to be done by 4pm (I started at 8:20am without the ability to eat or drink anything… yippy):

• phlebotomy (18 or so vials of varying sizes of blood collected for restaging) – this is usually pretty easy since all I do is get stuck like a pig and just let it drain. Sometimes the hard part is the urinalysis (which is an odd request from a phlebotomist if you ask me)

• CT Scan prep (IV line placement …. OUCH!) – this is also usually pretty easy since I don’t usually wear clothing with metal in/on it when I am in the hospital I can slide by a few guys in the waiting room. It’s the standard deal of getting the IV placed, drinking tons of that barium contrast shit and waiting … waiting … waiting.

• CT scan (head, chest, abdomen and pelvis) – 2 hours of waiting for a 4 minute scan! Today 2 of the 3 CT scanners were not working so everyone funneled through a single machine. This should have been a sign. Long story short … they placed my IV in a vein too small to handle the pressure of the injected contrast and blew it out. It still burns and it’s been almost 12 HOURS since the scan. This is going to hurt for awhile me thinks, tho the doctors think the scan looked great (e.g. no more lesions on spleen or liver) So I’ll chock this up to an “oops-a-daisy” and move on.

• Clinic – this is always a fun one. It’s the classic “we need you to be here at exactly this time NO LATER…to collect your vitals and then wait an hour for us to be ready for you”. Yeah, you get the point …. even at the NIH *sigh*

• PICC line placement (in my NECK because of not being able to eat to this point and/or being dehydrated) – This is where my day turned to liquid shit. See below and just wonder what it feels like to have had someone do that to YOU of a loved one. My wife did

I would love to show you a picture of me with my neck-picc line and a warm sunny smile:

But all I have is this picture of me with a goddamn PICC placed into my neck because I couldn’t eat  or drink until 11:30 or so and all my veins collapsed from either electrolyte deficiencies or dehydration. So, let’s just call it smoke and mirrors then

I am running out of places to put these damned PICC lines. I am now accepting suggestions for the 6th and final PICC placement for next round since it seems things may get interesting yet Some suggestions submitted so far:

• Asshole – of course
• Eyeball – why not
• Ear – mkuy
• taint – riiight
• on, in or near the ‘ole nuts – damned!
• in my ommaya – bascially tearing open the space time continum
• between fingers or toes
• brachial tube – you bitches are brutal

To my wife: I am sorry you had to witness and endure that. Trust me I was not happy about ANY of it.

Depocyt == teh suck

Depocyt, Depocyt, Depocyt oh how I love to hate thee.

The doctors put me on it because the Methotrexate simply wasn’t strong enough to completely clear my CSF. Ok, fine. It’s extremely expensive, it’s wrapped in a fat-type cell so I only require a treatment once every two weeks (rather than twice weekly) and it stays in the CSF longer to do its thing better. The problem …

Besides it being a bastard to acquire and have placed it also requires an additional drug to be given (dexomethasone) to manage its side effects which include:

• headaches
• weakness
• nausea/vomiting
• fever (slight)
• neck pain
• back pain
• etc etc etc

I have all of these symptoms. Fortunately (or unfortunately depending on how you look at it). I have waited for 6 days for relief without getting any by itself. A quick google search reminded me of this other drug (dexomethasone) that I am supposed to take ALONG WITH the injection for 5 days or so. The name sounded familiar (dexomethasone) so we went looking for a medicine bottle with that name …and low and behold we found it. It also has 5 refills!

I can’t blame this one on public health (other than to say a reminder would have been nice). So I am off to CVS to get some relief hopefully. Hopefully it’s not too late.

Note: This one is actually funny to me. Big Oops on my part!