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.

Gained 5.5 pounds

I can’t believe I am writing this but, yes, I have gained 5.5 pounds since my last cycle. After last cycle’s “stop losing weight or else” gestapo tactics I ate all kinds of fatty sugary crappy stuff. Ice cream to start AND end the day etc

The result I weigh an astonishing…..wait for it…..wait for it…

124.5 pounds!!!! Suck on that !!!! I keed I keed. 40 more to go.

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!

Ordered to eat!

I meant to post this awhile ago but it slipped through the cracks. If you have  a problem with that go ahead and sue me.

When I was last up at the NIH getting ready for round 4 I secretly knew it was coming … I didn’t want to admit it, but I knew. I’ve lost 45 pounds and counting since the start of chemo which is, admittedly, ridiculous for someone that only weighed 160 to begin with. When I compare pictures taken recently to those taken before cancer I am almost brought to tears. It is a SCARY fucking change from then to now. I look like I’ve died and am decomposing right before my own eyes. Normal, I know but still petrifying.

So when they weighed me and saw that I was continuing to lose weight from the previous round and was at 115 they stopped the line. I was ordered to eat everything and anything high in calories, fat, etc I could get my hands on. At the very least the losing weight had to stop; putting on weight would be a huge bonus. Tough to do do when 1) you’re not eating anything really and 2) have zero desire to to do so…

I now have to learn how to make food very nutritionally dense because I frankly don’t feel like eating, especially during the infusion… We tried an appetite stimulant that was derived from marijuana, but unfortunately it did nothing for me. Not even hallucinate

Edit: So I’ve been on this ‘eat anything’ diet for about a week and I’m up to 122. Nothing fantastic but at least the research team will get off my ass. I hope.

Round 4 done!

If I hadn’t gone through it myself I would not believe that I am already done with round 4. When I say “done” I of course mean with the chemicals…. Each cycle is 21 days and I am technically in day 9. I will be neutropenic by Tuesday the latest but you know what? I don’t care! I am at home feeling the best I’ve felt in a LONG time, enjoying my family and RECOVERING.

Another piece of good news is the fact that NIH thinks my spinal fluid may be NEGATIVE for lymphoma!!!! They switched my drug from Methotrexate for Liposomal Ara-C and did another flow cytometry before I left last week. They usually get back within 3 days … they haven’t yet and the research nurse indicated that they can’t seem to find any signs of Lymphoma in the fluid.

So stop looking!

The bad news? There’s always some isn’t there? My home oncologist’s office SUCKS! When I was a “wait and watch” patient everything was wonderful. Now that I am a “treating” patient they suck. Maybe it’s my fortunate experiences with the NIH that are screwing my perception, but they just blow. Can’t get the drugs right, I’m being pushed around to different doctors in the office etc etc. Anyway with this new drug it’s apparently VERY expensive and has a very short half-life. Both, to me, seem like insurance issues. So my research team usually gives the office a week or TWO notice ahead of when I’ll need what at home. So they send the order for the Ara-C and of course the office fucks it up. They even call me in early only to get there and now there’s no drug.

This is ongoing. Was supposed to get potential final dose of Ara-C Friday 8/21/09 … soonest the “pharmacy” is going to get it it is 8/25/09. If not Then I’ll be looking for a new oncologist. Timing could not be worse in looking for a new doctor, but at the same time I have to be able to do SOMEWHERE and get this fucking drug, else my NEGATIVE CSF goes away and I’ll be damned if incompetency is going to put me back in the cancer hole. FUCK YOU!

Hmmm…What the fuck happened to the Methotrexate working?

If it’s not one thing it’s always another right? RIGHT! Well even as I bask in the complete shit storm that has been this trip at home constantly being sick, in and out of the hospital the regular doctor shrug-off bullshit that has at more than one occasion either brought me to anger tears to want to grab the fucker and point blank ask if he even fucking cares, finding out that my ‘team’ decided all by themselves without consulting or even notifying their less-than-perfectly- healthy patient that the dosage will be increased …

I also find out that as a buttery topping for these fucking people’s popcorn we’re ALSO going to change my CSF medication to something ‘more effective for me at this point’. Huh? I thought what I was on that drug? No. Methotrexate, quickly, took me from a differential of 43 to one of 2.14 but seemed to stop there  based on my last differential and rather than risk time and the opportunity they are switching me immediately.

OK, I guess. not like I had a choice there either.

Cool part is it goes from twice a week to once every two weeks. Not as cool part is … it’s milky and bound to liposomes (fatty cells) so it stays in my CSF longer doing fuck knows what. And hey I’m sure it’s more expensive too. Yeah! Oh and it’s either called AriCee, or Cartarabine or some  ghey name like that (I will follow up on this so it can be all proper). Call it Jelly; it’s still shitty cancer drugs. Sugar won’t fix that. EVER

I had my first treatment on friday and apart from it feeling like a glass of milk being poured into my skull it wsa pretty much business as usual.

mkuy so that that’s been my week in a nutsheelllllllllllllllll! Where do I sighn up for the gov’t issued shotgun shells?