Friday, March 25, 2011

New Day, Better Outlook...

Well, thank God yesterday is over. I think the fact that I only had a few hours sleep the night before (due to all the craziness with my flight), was at the doctors office for 9 hours starting at 8:00 a.m. and the shocking news was enough to almost send me over the cliff It's funny, while we were all waiting in the dr. office, we were joking around how I was a rock star getting ready to start my 17th cycle! My trial coordinator was even so confident that he went ahead and filled my pills and sent me out to the lobby to wait for the official word which at that point seemed like a formality. It was then when they called me back in the office and I sat there an waited for another half an hour while they consulted that I knew something was wrong and sure enough, BAM!, they hit me with the news. Talk about being left with your pants down!

So, today, I have a new and better attitude. Strange how I can switch right back into warrior mode. I shot off a few emails and posted on my forum like I said. While I haven't heard anything back from my forum Hodgkins friends, I did hear back from Dr. Ramchandran and found out that phase 3 of RAD001 is getting ready to open at Karmanos in the D in a couple of weeks. While I have no idea if it'll work or not, it at least gives me hope, all a cancer survivor can ask for...

Here's to a new day!


Thursday, March 24, 2011

Tough News...

It's really hard to write this but I'm off the trial. My main lesion (in my retrocrural area) has gotten much bigger, from 1.8 cm x 1.1 cm to 4.7 cm x 1.7 cm. While the other lesions are essentially the same, the major growth in my "spot" is enough to constitute 50%+ growth from the lowest point of my disease (or nadir).

I have to say, I didn't see this coming and think I let my guard down a bit, big mistake. I'm kinda writing this in a state of shock - almost outer body experience - but starting to feel a little better as the anti anxiety meds are kicking in. It's going to take a little while to regroup once this really settles in...

It's just so hard to start over, ugh... I have to find something that's enrolling now (hopefully at someplace I'm familiar with). I'll be contacting doctors and consulting with my Hodge forum friends for advice as to what to do next.

I'm basically walking into the unknown again with no guarantees I'm going to be able to find my way out. The unknown is always the scariest thing.

Once I get over this disappointment, I'll gather my strength and move forward the best that I can.

The most important thing I think is to just try and keep my head up and keep the faith. It's not like I haven't been through this kind of thing before right?

I will never again let outside stress into my life. No matter what happens, I need to stay on an even keel and solely focus on enjoying every minute of this life the best that I can.

This is a sad day. However, I know I will bounce back.

Sorry for the bad news,


Switching gears…

So, after a major delay, I’m finally on my way to New York. The flight was two hours late and the runways were closed at LaGuardia so we had to make a pit stop in Atlantic City. For a second there, I thought I was going to have to rent a car or figure out how to take the train as I have to be at NYU in Manhattan tomorrow morning for blood draw and subsequent PET scan. I have to say, I’m really sad to be leaving Florida as this was probably my best stint yet. I mean, I really had a great time from start to finish!

Big thanks to my buddy Mike for putting me up in his place until I’m able to transition into my new place. My condo is still bombed out and finally got word that the insurance is going to replace the windows, clean up the smoke damage, replace the duct work (and possibly AC unit) plus other incidental stuff. Hopefully once this is done, I can find a buyer for the place. We’ll see…

I did have something crazy happen to me yesterday and of course I have to document it ;) Mike lives on a canal connected to the intercoastal and he has kayaks. We went out one night on a tandem trip and it was really cool. He showed me this spot where these people have sunken green lights on the bottom of the canal to help them pull their boat in properly at night. Turns out, there’s these fish called Moonfish that really dig these lights and will swim on their sides in circles all night around them! The fish are a little larger than my hand but they are bright silver and have this really cool fin coming off their dorsal. It’s really quiet out there too and you can hear the birds singing, very peaceful.

So, with that experience a couple nights ago, yesterday I decided to take the 1 man kayak out by myself to the same spots, by the mangroves but during the day. I was having a great time, drinking in the nature, sunshine and relaxation. I saw a pair of really sweet blue herons and managed to get some shots of them. I was just kicking back enjoying myself floating down the canal when all of the sudden my body started to go into convulsions! It started with my calves. I can’t describe the pain but liken it to being shot (as I’ve written on here before). Normally when this happens, I’m in bed and all I have to do is somehow get out and stand on the floor and it goes away. However, being seated in a one man kayak, I unfortunately didn’t have this option. So, I tried to straighten my legs or pull my feet back and no matter what I did, another muscle would start spasming, it was horrific. I could actually see the muscle in the front of my shin pulsating. As I tried to reach down to massage the muscles in my legs, the muscles in my abdomen started to do the same thing then my hands then my back. I felt like I wanted to die. It was so bad, I had almost considered trying to step on the sharp rocks that were below me that would have surely tore up my feet something fierce. Luckily, I decided against that and secured the stuff I had with me in the boat like my sandals, otter box and hat and fell over into the water thinking maybe I could “kick it out”. Turns out, the spasms just moved to other areas of my body, ugh. I don’t know how long this lasted, seemed like an eternity, but I was almost screaming in pain. I managed to pull myself together while in the water and started to push the kayak toward the residential area of the canal where I saw ladders that I might be able to step on to hopefully relieve the madness. As I was doing this, I looked up and noticed all of the residents that owned these beautiful homes on the canal were out and asking me if I was ok. I can imagine it must have sounded and looked pretty scary to these people. I explained to one of the guys as I approached the ladder that sometimes I get these cramps and told him I just needed to stand up somehow. I then managed to get to the ladder, stepped on the bottom step which was full of barnacles (managed to not cut my feet somehow) and took one step up and the pain started to diminish immediately, thank God. I told the guy that I was ok and he joked back by saying “thank God I didn’t have to jump in and get you”, haha.

Just kicking back, enjoying the sun and beauty of the place!

Even spotted a pair of beautiful Blue Herons (the other one flew away after I spooked it)

Almost had to step on these rocks, glad I didn't...

So, I rested for a few minutes on this ladder and decided I needed to try and get back to Mikes place somehow which was about a mile away, major challenge. My hands were still severely locking up, to the point where I couldn’t grip the paddles except by rotating holding it with my thumbs then index fingers. I had to take a bunch of breaks and hold my arms, hands folded, over my head when I had a spasm. I tried to close my eyes and take deep breaths… I was so worried it was going to happen in my legs again and by now was quite traumatized to say the least.

I finally did make it back thankfully and almost kissed the dock when I was able to get up onto it. The cramps continued but nowhere near like they were while in the kayaking position on the water.

It’s weird as all the previous times this has happened (mainly in bed) I think I could attribute it to being under hydrated. In this instance, I drank a 64oz Gatorade while I was paddling. Who knows, maybe the fluid didn’t have enough time to circulate to my muscles. Maybe I was too behind on drinking for it to take effect. All I know is ever since then, I’ve been drinking tons of water whenever I can. I still had cramps this morning but they were manageable. As for my hands, they’re still locking up, ugh.
It’s really ironic as I just wrote in my last post how much stronger I fell and all that. Looking back, Murphy’s Law tells me I probably shouldn’t have written that post, haha. All I know is that I hope that never happens again, way too scary and painful…

So, like I said, I’m in route to Manhattan where I have to show up at NYU tomorrow morning at 8:20 for blood draw. I’m nervous as I can’t eat my pineapple because of the mandatory fasting 12 hours before the scan. So, the plan to try and get my platelets going is doing all seven or eight flights of stairs at NYU, then go in and immediately do the blood draw.

With that uncertainty looming, I then go upstairs to the second floor to prepare for my PET scan (which is a whole other pile of uncertainty). I need to go two for two tomorrow! Anything else is unacceptable at this point.

So, needless to say, I’m asking for all the good vibes and prayers I can muster ;)

All that said, I feel really calm right now and somewhat confident (at least for the PET scan). I know there’s still disease in there as I had a glass of wine last night and my back was on fire, right where my disease is located. It doesn’t seem worse than normal however and hoping for stable or better disease.

Should know the results by late afternoon and will post once I know.

Thanks for reading and in advance for the good vibes and prayers :-)


Saturday, March 19, 2011

Life is good!

Just sitting here watching March Madness and thought I'd do an update. Really glad to say that I'm still feeling pretty well and have really been enjoying everything South Florida has to offer :)

So, the last I updated I mentioned that I was going to hit the Delray St. Paddys Day parade and that I did! It was pretty cool as my good Hodge buddy Bekah (who is also doing very well and looked great :) came down with a few of her good friends who were really nice. It was great to see Bekah and her posse and we all had a great time at the Parade.

Hangin out at Paddy McGhees on Atlantic!

Bekah and the girls at the after parade party (which obviously hadn't started yet, lol) at Brus Room.

Every day down here lately has been picture perfect. The nice thing about it is I've actually been able to enjoy it this time! Last winter was so different... Dealing with Fibromyalgia then the Guillain Barre Syndrome pretty much wiped out the entire winter. I remember it being a major task just for me to update this blog because I couldn't control my fingers to type! Doing an entry like this would take me hours having to punch keys with one or two fingers. I'm so grateful...

So, now that I have most of my strength back, I'm able to do things again that I love like riding my bike, playing golf, fishing, walking down the beach - hell - walking anywhere! It's funny, I was at the mall yesterday and they had a guy in the parking lot with an extended golf cart to give rides to people to the mall from their car! At first, I thought it was just the ridiculous amount of money that people have around here then realized it's probably there to cater to the older folks who may have trouble getting around. The last time I was at that mall was last winter and remember majorly struggling to walk across the parking lot, not to mention once I got inside. (I would have gladly jumped on that golf cart if it was there last year, ha!) It was then that I realized something was really wrong with me. In fact, now that I think about it, I was actually Christmas shopping. I remember having to take the plastic bags and wrap them around my wrist so I could carry them. I also remember trying to do my signature on the credit card machine and barely being able to scratch something out. I can't tell you how far I've come from that day and I don't take a bit of it for granted...

Not a bad day on the water yesterday, 6 Yellowtails and a Mutton snapper, great eating. I also lost several fish, had a couple of big ones on that snapped my line.

All of them are Yellowtail Snapper except for one Mutton Snapper, can you pick out the Mutton?

So, the plan is to just keep this going! I'm here until the 23rd then I'll be flying directly to New York for yet another PET scan.

Pura Vida as they say in Costa Rica ;)

Friday, March 11, 2011

Feeling Better :)

Really glad to say that I've broken out of my funk! Woke up this morning feeling much better, thank God :) I'm writing this from the beach and I think the sunshine is definitely giving me a boost not to mention I've discovered 5 hour energy and those things really work!

Big St. Pattys Day parade down on Atlantic Ave Tomorrow, supposedly the biggest st paddy parade in South Florida. Should be some great photo ops...

Erin Go Bragh!

Thursday, March 10, 2011

Not sure what to title this post...

It's been so nice to come down to the warm moist Florida air! As soon as I stepped off the plane, it felt like I just lathered myself in moisturizer or something, very nice. I'm sure my Michigan friends and family know what I mean by it being "dry" up there in the winter. I really struggle with chapped lips and the inside of my nose gets so dry that I get nose bleeds pretty frequently. I think these are exasperated by my chronically low platelet counts although I don't notice it down here like I said.

I've been struggling a bit with my energy lately. The last few days (starting in Michigan) I've really struggled to get out of bed and once I'm up, I just can't seem to get going... My whole body seems really sore too. It's almost like I have the flu without having the cloudy head. I'm getting a bit worried that it could possibly mean that my disease is growing, ugh. Fatigue is a symptom amongst many... It could be due to the fact that I was under a lot of stress last month for numerous reasons. I may have just worn myself out mentally and hopefully this time down in Florida (barring any disasters) will do me a lot of good.

I don't want this to come across as me complaining because I'm not. I'm really blessed to have this life and know there are a few of my friends and others that I know of who are really struggling right now. I guess I'm writing this to document this fatigue and be able to look back to see if it improves.

In any event, I'll know for sure what's going on after March 24th when I go to NYU for my next PET scan. I'll be flying there directly from here in Florida for the first time. I'm getting excited to go as it seems like it's been a while (last two times have been day trips and this time I'm staying for 3 days). I'm watching March madness right now at the Garden (which is just down the street from Hope Lodge) and just witnessed a great Big East tournament game with Connecticut beating Pittsburgh at the buzzer after Kemba Walker hit a last second shot!

I'm due back in Michigan on the 26th hopefully feeling more energized and knowing that I can continue on this trial.

I'm so close to being settled (relatively speaking) in my life!

Just like everything else, this too will pass...

Monday, March 7, 2011

Florida Bound!

Well, I think I'm ready to give it another shot... The smoke and soot has cleared from my lungs and this time around is going to be so much better, I can feel it! Moving into my new place has been delayed until March 16th but my buddy Mike has offered to put me up until then so I'm all set. Don't have any concrete plans yet but know that it's going to be a blast! I've been busting my butt/back up here in the great white north the last week and ready for some R and R...

So, the plan is to stay down in Florida until the 23rd. From there, I'll be flying directly to New York on the 23rd where I'll be having another PET scan on the 24th. Hopefully I'll get good news and be able to celebrate a bit in Manhattan as it's been a while since I've stayed for more than one day there. I then fly back to Michigan on the 26th where I'll be permanently moving into the new place.

Things are almost in place...

I like staying busy even though it's exhausting. I've been getting to bed earlier and waking up earlier which seems good. I think staying physically busy for most of the day has been helping me sleep too (not to mention having the back pain under control of course).

On the surface, I guess you could almost say things are normal, ha....

By the way, just wanted to wish my Mom a happy birthday! We went out last night and had a really good time at this great restaurant once they got their act together. I'll miss the family while I'm gone (not to mention Chili).

They were 45 minutes late on our reservation and it took a relief waiter but the food was good and we had a fun time :)

Also, congrats to my step bro Kenny and his wife Joslyn on their new baby Ethan Michael Miramonti!

Thursday, March 3, 2011

If at first you don't succeed...

You then run up and down seven flights of stairs!

I arrived for my blood check in Detroit yesterday (in between visits to New York) and was feeling confident - almost cocky - about hitting the 50K platelet count necessary to continue on the clinical trial. I mean, I've done the pineapple now three times in a row without fail so why would this time be any different right? Well, I guess that's what happens when you get cocky, you get a platelet count back of 44K, yikes!

Dr. Ramchandran, to my dismay, was really cavalier about the results, ugh. He had no idea of the history I've had with low platelets and how we dealt with it at NYU. So, of course he gave me a blank stare when the first thing I asked him was where the nearest stairwell was! Even after he responded back by saying they're down the hall, he had no idea that I was going to get my blood tested again, today, and was actually amused when I told him about how I've been able to get my plates to jump 5-7K after getting my heart pumping. He was just telling me to come back at the end of the week or whatever... This wasn't an option as being on a clinical trial you have to adhere to the schedule of the cycles and I was determined to keep this going on time...

So, I ran down the hall, found the stairs and proceeded to run up and down over seven flights. By the end, I was totally winded and went into blood draw wheezing like an asthmatic!! The nice lady drew my blood again and after a two hour wait for the results, sure enough the new count came back 52K!! Yesssss ;)

With this great news, I was able to take my SAHA again last night along with a Naproxen to calm down my back pain and enjoyed my first almost full nights sleep in about a week with little back pain.

Next time, I'm going to make sure to do the pineapple and get my blood flowing and hopefully won't have to deal with the stress again...

On another note, I just wanted to request and send out some prayers and good vibes for my friend Lee in L.A. who's dealing with a Glioblastoma brain tumor. Lee and I were diagnosed at the same time and unfortunately, a suspicious growth has turned aggressive and the doctors want to get him on new chemo (along with some he's had before) to try and stop it in it's tracks. I guess he had a major seizure earlier that he's still trying to recover from. I know what these seizures are like as my sister deals with them on occasion as a side effect from her beating brain cancer (Glioma) and subsequent resection of the scar tissue left behind.

The talented Mr. Lee McPherson

So Lee, know that I'm rooting for you and saying prayers and sending good vibes buddy. You can do this man!! If you'd like to leave a positive comment, you can find Lee's blog in my blog list under One Quarter Blind...