Monday, July 26, 2010

Settled In....

I planted an apple tree in my backyard when I first bought the place and it seems the squirrels in the neighborhood are fattening up for the winter from it's fruit!

Well, I think I'm finally settled into my house. I added the final pieces today finding a dining table and chairs at the Salvation Army to go along with my other stuff I've collected over the years and have been keeping at my Mom's place. It's really nice to be back in my old crib! It's really nice to have Chili back too and I think she likes it here. We went across the street to this huge park, took her off the leash and she was running around like crazy :D Everything is pretty much the same around here except my neighborhood seems to have gotten younger. When I first bought the place, there were quite a few elderly people on the street. Now it seems like they've been replaced by mostly gen x folks like myself and maybe even some of the gen y crowd.

Chili seems pretty comfortable in my new (old) digs in Fashionable Ferndale.

I picked up the the kitchen table and chairs at the resale shop today. I bought this house 12-13 years ago and with a lot of work and help (mostly from my stepfather Rich) completely gutted and remodeled it from the inside out. Something to be proud of I guess...

My buddy Rob and I built the maple kitchen cabinet doors down in his basement in Dearborn. The counter top on the right I built over my washer and dryer (the cabinet lifts up and they're underneath) as there's no basement in the house.

Now that I've gotten most of my projects taken care of like changing faucets, toilet seats etc. I can concentrate on enjoying some golf and getting to work on my Bimmer. I found some nice replacement leather Recaro seats at this guys shop down in the hood. I wanted to take some pictures of this street where this guy has his shop but unfortunately I forgot my camera. If you looked at one picture of this street and another picture taken from a street in war torn Iraq or Afghanistan you wouldn't be able to tell the difference. There are piles of broken concrete where there used to be a house, another completely burned down house with just the shell left and vacant lots overrun with tall weeds and wild trees. There was one house however that was still standing and there were actually people living there, actually quite a few people the last time I went (I've been over there twice). It was funny, the day I went to pick up the seats, the people that lived at the house had a homemade karoake machine setup on their front lawn except instead of singing songs, they had a beat in the background and were making up their own raps. It was like 2 in the afternoon on a Friday and everyone was drinking 40's and cutting loose. I asked the guy that owns the shop (Louie) if he ever has any trouble and he said (to my suprise) "never". He's been collecting old BMW parts at this shop for 23 years... He also has this big ass Rottweiler that lives outside where all the old cars are parked and think he may have something to do with nobody messing with the place.

As far as that hindrance I deal with called Hodgkins Disease or Lymphoma, I wanted to document something I noticed a few days ago and slightly concerned about. I took another look at my last PET scan and noticed a section that didn't get discussed at my last visit to New York. According to the Radiologists report, there is a new area of activity in my neck that is less than a centimeter but registered an SUV (radioactive sugar uptake) of 7.2 which in my experience is significant. I took a look at my last scan and it mentioned the spot as well but made no mention of uptake except that it may be suspicious. So, I called Dr. O'Connors office and spoke to Ellen (one of his assistants). I asked her why they didn't bring up the node the last time I was in and she said because of it's size (less than one cm). My question to her is why wouldn't you tell me about this, especially when the SUV level has gone up since my last scan?
She said that they don't consider the lymph node to be necessarily cancerous if it's under 1cm. "It could be a number of things including infection". I don't really know what to believe to be honest. Does this Dr. want me to stay on his trial just so he can have better data #S on his trial (for length or duration of response)? Or, is it nothing to be concerned with and possibly an infection like Ellen said. I think this warrants a little research on my part and plan to talk to my other doctor asap. The last thing I want to do is stay on this drug too long, have my disease progress and possibly miss out on a new trial that has an opening here in Detroit, RAD001. So I go on Wednesday for an MRI on my spine and plan to speak to Oncologist here at Karmanos to see what he thinks.

This stuff is never easy, ugh...

Wednesday, July 21, 2010

Quick Update

It's been a week since I've written anything, time is flying by! I've been pretty busy getting my house together in Ferndale. It's pretty weird living here again as it's been well over 10 years since I stayed in my house! The day that I physically moved in was pretty memorable. The Bradford Pear tree that I planted shortly after I bought the house 12-13 years ago was damaged in a storm that rolled through here last week and 1/3 of it was on the ground in my front yard, bummer. My former tenant told me it came a couple of feet from crashing into the house, wow. So, I had to chop it up with a reciprocating saw and drag it out into the street. I'm hoping that the large gap that is left in the tree will fill in over the years...

After I got that taken care of, it's been little projects here and there that will probably take me a few months to complete as I'm in no hurry. One thing I needed to get done right away however was building a bed! I brought my memory foam pad up with me from Florida and had been laying on top of it on my floor up until tonight. I built a platform out of 2x4's and particle board that has me raised off the floor, so nice! I probably could've gone out and bought a bed but I only plan to be here a few months plus I like building things and using my hands (thus working on my strength). My forearm is pretty sore right now just from using a hammer, pretty pathetic. Oh well, it's pretty satisfying nonetheless unless this thing comes tumbling down, ha!

It really feels good being able to work on this house though... I actually cut my lawn today, the first time I've done that in a while. I've been living in apartments for the last 5+ years... There's something relaxing about mowing your lawn that's hard to explain (or understand for that matter with the annoying noise of the lawnmower and all). I think what it is for me is just being able to do this stuff again after only a few months ago not even being able to start my car as my hands were so weak. I feel a lot more useful these days...

As far as the medical stuff goes, I failed to mention in my last post that Dr. O'Connor wants me to get an MRI of my thoracic/lumbar to see if the lymphoma is in my spine. I know this sounds a little scary but we need to find out why I'm having this pain in my back. I know I have 4 infected nodes near my spine but they can't tell I guess if it's in my spine without an MRI. If you ask me, this is way overdue but better late than never I guess. So, I go next Thursday. Prior to my MRI appointment, I'm due to meet with my Neurologist to try and determine why I'm having these spasms in my hands and legs lately. It's really uncomfortable, painful and scary when I'm using my hands or stretching my legs or twisting a certain way and that particular part of my body will suddenly lock up. It mostly happens with my hands but sometimes get it in my legs when stretching or my stomach when I have to use my abdominal muscles. I have a feeling it's the residual effects from the Guillain Barre but hoping Dr. Ramchandran can treat it or mitigate it. It's always something right?

By the way, just wanted to send out some prayers and good vibes to my refractory friends Michael and Bekah (you can now follow her blog "True Beauty Never Hurries" in my blog links) who are at or potentially at the end of the road for their perspective clinical trials due to disease progression or side effects. They now have to deal with the major stress and anxiety of what to do next. I wish both of you wisdom and guidance and know that the next choice will be the best one for you.

Anyway, that's my quick update for now, looking forward to a nice weekend on the West side of the state which hopefully includes some golfing and fishing :-)


Thursday, July 15, 2010


Just got back to the Hope Lodge much lighter on my feet with a huge gorilla off my back. According to the scan, my disease is stable, woooo hoooo! I still have 4 "hot spots" near my spine that really haven't changed in size (except for millimeters) since April. I will surely take it after the freakout session I had the other night.

The thing we're going to work on is pain management. I was prescribed some long acting pain meds that I'm supposed to take 2x per day (one in morning and one at bedtime). I also now have some instant relief meds for breakthrough pain. Dr. O said it's all about staying ahead of the pain and keeping a level of drug in my system that will control the pain. Do I like having to depend on pain meds, not necessarily... That said, at this stage of the game what do I care? As long as I don't have to endure this back pain and can sleep I'm ok with it.

So, it's been a long mentally draining day of blood tests, laying in a tube with my arms above my head for 45 minutes and an excruciating wait of 2 hours to find out the results. Needless to say, I'm exhausted. Time to lay down for a sweet nap and hopefully hit the town tonight with some friends here in Manhattan (I guess there's a birthday party or something).

Thanks for all the good vibes/prayers.

Six weeks I get to go through all of this again, ha!

Wednesday, July 14, 2010

Borrowing from a friend

I just visited a friends' blog and wanted to share an entry she decided to repost from last spring. I don't want to mention her name as she prefers to keep her blog private (hope you don't mind my friend :) There's no way I could do a better job of expressing what it's like to live with refractory cancer... So, please enjoy this beautiful entry from a special person.

How do you live with chronic cancer?

Between treatment last week, the move, and other odds and ends its been a bit of an emotional week. Sometimes, I just need reminders that we're all doing the best we can do (this includes me.). I wrote this post last spring, and sometimes rereading it, helps remind me of that...
-----Throughout the last few months, I have been thinking, carefully. About this topic. About the beautiful, kind-hearted , soulful individuals who fall into this unforunate category.

Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?

And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.

And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.

But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.

I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.


A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.

I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.

I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.

I experience pain.
therefore, I experience, beauty.

Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.

In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.

Today, I hope you take the time, to hug the ones you love.

Tuesday, July 13, 2010

Not Optimistic

Just wanted to release some negative energy into the blogosphere... Went out for a beer with my buddy Ramil a little while ago and I'm back home laying in bed right now in some pretty bad pain. My back is really aching big time and it's been a reliable indicator that the cancer is thriving unfortunately.

This is my off week for the pills so maybe that's the reason...

I'm pretty calm but hoping this ache goes away soon so I can get some sleep. I don't drink very often and it's crazy how one Coors Light can put such a fire in my mid back, ugh.

So, maybe I'm just writing this to soften the blow on Thursday when I get the results of my PET scan. In any event, I somewhat have a plan just in case my disease is no longer responding to the S&N and progressing. I think there's still a spot available in the RAD001 trial here at Karmanos with my last Dr. Ramchandran.

I guess I'll cross that bridge when I get to it...

Monday, July 12, 2010

Happy Birthday Nicole!

This is sorta late (but better than never) but just wanted to wish my sister Nicole a happy birthday!

We of course share the bond of brother and sister but we also share the bond of being fellow cancer survivors! She was diagnosed with a Glioma in 1990 and had a 20% chance of living for more than 2-3 years. Well, here we are 20 years later and she's still alive and relatively well I'm proud to say.

While she has her struggles like all of us cancer survivors do, I am very proud of her for her bravery and what she has to overcome on a daily basis.

So, here's to you Nicole, love ya Sis :)

P.S. The Tears for Fears song is an inside joke, ha ha Nicole!

Thursday, July 8, 2010

Home Sweet Home!

Just rolled up to the D a couple hours ago, what a relief! It took me three days but it's really great to be back home.

The trip started off with a dubious bang as I was pulling out of my community in Delray into Target to return something and to get some drinks and snacks. I had my BMW hooked on the back of my CRV with a tow bar and as I pulled into the parking lot, I heard a cracking noise that didn't sound good. I paused, looked back and didn't see anything suspicious. I put the car into gear to move forward again and there was now a screaching noise, ugh... I decided to get out of the car to take a look and sure enough, the tow bar that I had affixed to the bumper of my Bimmer ripped right out of the soft aluminum and was hanging there by a thread. I was still on the incline of the parking lot and was scared the car was going to break off and roll back out to the road and take out some cars driving by. So, panicked, I looked back and sure enough a police car was pulling in behind me as I stood there watching in disbelief! All the while, there's my dangling car -- I'm thinking, "this thing is going to snap off and roll into the cop car, yikes!"...

Thankfully, the car didn't snap off. And, instead of writing me a ticket for having a half ass tow hookup, the cop got out of his car and helped me push my old Bimmer up the incline and into the parking lot (with the help of another good samaritan). To do this, we had to rip off the rest of the tow bar from the now torn up bumper (it's not that bad and can be hidden with a license plate ;). I then had my buddy Dan come up to Target to meet/help me as I rushed to U-haul to pick up a heavy duty Tow Dolly. I cautiously hooked it up and rolled out of Delray scared to death... I think there's a lesson to be learned here somewhere, ha!

I write this as I lay in my bed at my Mom's place realizing that I didn't tell them the story tonight! I kinda blocked it out of my mind as I was so freaked after it happened knowing that I still had to drive 1200 miles... To put it mildly, I was pretty white knuckled for the first few hours and gradually gained confidence as I rolled along. I couldn't go faster than 55 mph (per the warning stickers on the U-haul rig) and to be honest, wasn't in any hurry after the debacle. So, instead of the trip taking me 2 days, this time it took three and have to say it was pretty smooth except for hitting a nasty storm in southern Ohio that had me driving 40 on the highway with my hazard lights flashing.

So tonight I relax, stretch out my back and get some sleep. Tomorrow I'm going over to my house to drop off some stuff and then down to the Copa to catch a ballgame, yessss! It's my week off the pills then I'm off to New York next week for another PET/CT scan to see where my disease is at.

Seems like yesterday that I was on the golf course talking to my trial coordinator asking questions about my last scan... It'd be nice if I could just forget about all of this and not have the burden of wondering what's going on inside my body. Hoping this change of scenery will keep my mind occupied so I won't have to think about what I might have to do just in case the S&N is no longer holding my disease down.

I guess I'll cross that bridge when I get to it ;)

Good night from the D

Friday, July 2, 2010


This doesn't have anything to do with cancer but makes me sick nonetheless... I just can't believe this (The BP Leak) is happening. Powerful companies are taking over our country and slowly destroying it (literally). I know I should be worrying about other things but I can't just sit around and ignore this.

If there ever was a time to pay attention to the energy policies of this country, it is now. Now is the time to investigate how these oil companies are allowed to operate like this seemingly without any oversight. It's time to ask the question "why isn't there more being done to pursue alternative energy sources"? Hell, while you're at it, time to take a look at how the banking industry was allowed to operate unregulated for as long as it was in leading up to the financial meltdown. Our current and past elected officials are letting these industries destroy our country right before our eyes...

Unfortunately, we can't vote big companies like BP and AIG out of business...

It's time to put the power back in the people's hands and limit the power of these mega companies. This has gone way too far...

So that's my rant for now, I wish I could say I feel better but I don't. I'm just really pissed and saddened by this whole mess if you can't tell ;) BTW Obama, you have the executive power to pull out all the stops in containing more oil at sea and preventing it from coming ashore. Time to get busy sir, it's only been 70+ days. The people of the Gulf are waiting...

If you can, copy and paste this link into your browser. It's a banned YouTube video covering the catastrophe.

(hopefully BP hasn't shut it down yet...)