Found out yesterday that my friend Lee passed peacefully with his wife Dana by his side. While I am crushed, I'm also thankful that he is at peace. Sending love to Dana and Mr. and Mrs. McPherson, all great people.
Lee will definitely be missed but certainly not forgotten.
With a heavy heart,
Chris
BTW, I think everything is a go for the new trial. I had a nastier than normal bone marrow biopsy (they had to chip off a piece of bone) on Wednesday and just waiting for the results.
Probably will update as soon as I start taking the pill. Hoping this starts working fast as my disease has grown according to the PET/CT report.
Friday, April 29, 2011
Friday, April 22, 2011
Random Stuff
Well, I finally got internet access today in Michigan and I'm officially connected again, hooray!
It's been a bit of a challenge living here though as I don't have a shower or sink in the bathroom. I've been able to shower at friends' houses though so I manage not to get too ripe, haha.
I kinda look at it as just do what I can on these places and eventually everything will get done, right? The only question is how long is it going to take me... I'm guessing six months so here's to good health for the next six months.
Speaking of which, I think I'm in the Everolimus (RAD001) trial at Karmanos! My platelets were a whopping 94K, I couldn't believe it! The only other hurdle now is another bone marrow biopsy which will now be my 7th I believe. I still can't get used to the fact that they're sticking a huge needle into my hip to suck out bone marrow. I want to be out of it when they do it. My back is lick a freaking pin cushion, jeez. This is on the heels of one of more painful procedures I've had done in a while... When down in Florida, I got one of those gel earplugs stuck in my ear as I tore off a piece too small and it broke off in there. I tried to get it out with tweezers and all I did was push it in further. So, I went to the ENT and he didn't have his normal telescope so he basically had to "dig" it out. The first 10 or so digs weren't that bad. However, the ear can get sensitive really quick, especially the inner ear and the more he did it, the worse it got. The thing is, the piece of earplug was fused to a portion of my eardrum. He basically had to rip a scab off my eardrum to get it out. I told him it would be a great torture technique (sure it's been done). He was actually a pretty funny guy and we were joking about that scene in the Star Trek Wrath Of Kahn flik were the millipede like creature crawls into that guys ear, gross...
So, back to the trial, I just need the bmb and another PET/CT. The goal is to start next Wednesday. I'm to beware of side effects like lung complications or toxicity, low counts, rash, nausea, fatigue, loss of appetite and all kinds of other rare side effects. I'm trying not to think of any of that as it's out of my control and I have to stay balanced and keep my expectations moderate while staying hopeful. I know of people who've been on this drug for almost a year or maybe more so that's good. I'm definitely due some good luck!!
So to close this out, I just wanted to say something about my good friend Lee McPherson. As I mentioned before, hospice has been called in and they're going to do everything possible to make Lee comfortable as he leaves this world and enters into the next. It's tough for him because he can't speak right now but can squeeze his hands to communicate. My good friend and former roommate Mike is flying in from Hawaii to Pasadena to say goodbye this weekend. I wish I could go... I actually met Lee through Mike as those guys used to be roommates here in Michigan. They played in a band together called Skinmill, Mike was the drummer and Lee the base player. Lee is one of the most talented people I know. He would come over, pick up my guitar and start playing along with songs that came on the radio. He wasn't even a guitar player... Lee also is a talented writer. He used to write the Pistons blog on Mlive.com. He was a journalism major at Michigan State and I went to Michigan so we would talk a little smack here and there of course. As many of you may or may not know, Lee was diagnosed with his brain tumor like a week after I was diagnosed with my cancer so in a way, we're partners. I feel like I'm losing my partner and it really sucks. He was doing so good, beating the odds and I admired so much his calm and positive attitude. He went back to work and even went back to play with his new band. The tumor messed with his balance and motor function but would say that when he played the base, it was like nothing happened. I guess that's muscle memory for you. Anyway, I just want to say to Dana and Lee that I love you guys and wish things could be different. I'm so proud of the both of you how you went about everything with grace and courage. Lee is like a mentor of mine even though we didn't talk a lot. He's one of those guys you can pick up with right away no matter how long it'd been since we rapped. Lee is a really funny guy in zany sarcastic way. I admired his writing skills and aspired to write from reading his columns. Lee also had great taste in music and to this day, some of the indie bands he introduced me to are in my all time favorites. We really have a bond that not too many people have and I'm really going to miss the guy.
P.S. Lee really loved Jaco Pastorious.
P.S.S. I mistakenly called out Lee's blog as Third Eye Blind last time (hope you found that funny Lee ;) I was a wreck that night after the news but anyway his blog is One Quarter Blind if you would like to check it out on my list. He is and always will be a cool cat.
Here's to you Lee, you won't be forgotten brother
It's been a bit of a challenge living here though as I don't have a shower or sink in the bathroom. I've been able to shower at friends' houses though so I manage not to get too ripe, haha.
I kinda look at it as just do what I can on these places and eventually everything will get done, right? The only question is how long is it going to take me... I'm guessing six months so here's to good health for the next six months.
Speaking of which, I think I'm in the Everolimus (RAD001) trial at Karmanos! My platelets were a whopping 94K, I couldn't believe it! The only other hurdle now is another bone marrow biopsy which will now be my 7th I believe. I still can't get used to the fact that they're sticking a huge needle into my hip to suck out bone marrow. I want to be out of it when they do it. My back is lick a freaking pin cushion, jeez. This is on the heels of one of more painful procedures I've had done in a while... When down in Florida, I got one of those gel earplugs stuck in my ear as I tore off a piece too small and it broke off in there. I tried to get it out with tweezers and all I did was push it in further. So, I went to the ENT and he didn't have his normal telescope so he basically had to "dig" it out. The first 10 or so digs weren't that bad. However, the ear can get sensitive really quick, especially the inner ear and the more he did it, the worse it got. The thing is, the piece of earplug was fused to a portion of my eardrum. He basically had to rip a scab off my eardrum to get it out. I told him it would be a great torture technique (sure it's been done). He was actually a pretty funny guy and we were joking about that scene in the Star Trek Wrath Of Kahn flik were the millipede like creature crawls into that guys ear, gross...
So, back to the trial, I just need the bmb and another PET/CT. The goal is to start next Wednesday. I'm to beware of side effects like lung complications or toxicity, low counts, rash, nausea, fatigue, loss of appetite and all kinds of other rare side effects. I'm trying not to think of any of that as it's out of my control and I have to stay balanced and keep my expectations moderate while staying hopeful. I know of people who've been on this drug for almost a year or maybe more so that's good. I'm definitely due some good luck!!
So to close this out, I just wanted to say something about my good friend Lee McPherson. As I mentioned before, hospice has been called in and they're going to do everything possible to make Lee comfortable as he leaves this world and enters into the next. It's tough for him because he can't speak right now but can squeeze his hands to communicate. My good friend and former roommate Mike is flying in from Hawaii to Pasadena to say goodbye this weekend. I wish I could go... I actually met Lee through Mike as those guys used to be roommates here in Michigan. They played in a band together called Skinmill, Mike was the drummer and Lee the base player. Lee is one of the most talented people I know. He would come over, pick up my guitar and start playing along with songs that came on the radio. He wasn't even a guitar player... Lee also is a talented writer. He used to write the Pistons blog on Mlive.com. He was a journalism major at Michigan State and I went to Michigan so we would talk a little smack here and there of course. As many of you may or may not know, Lee was diagnosed with his brain tumor like a week after I was diagnosed with my cancer so in a way, we're partners. I feel like I'm losing my partner and it really sucks. He was doing so good, beating the odds and I admired so much his calm and positive attitude. He went back to work and even went back to play with his new band. The tumor messed with his balance and motor function but would say that when he played the base, it was like nothing happened. I guess that's muscle memory for you. Anyway, I just want to say to Dana and Lee that I love you guys and wish things could be different. I'm so proud of the both of you how you went about everything with grace and courage. Lee is like a mentor of mine even though we didn't talk a lot. He's one of those guys you can pick up with right away no matter how long it'd been since we rapped. Lee is a really funny guy in zany sarcastic way. I admired his writing skills and aspired to write from reading his columns. Lee also had great taste in music and to this day, some of the indie bands he introduced me to are in my all time favorites. We really have a bond that not too many people have and I'm really going to miss the guy.
P.S. Lee really loved Jaco Pastorious.
P.S.S. I mistakenly called out Lee's blog as Third Eye Blind last time (hope you found that funny Lee ;) I was a wreck that night after the news but anyway his blog is One Quarter Blind if you would like to check it out on my list. He is and always will be a cool cat.
Here's to you Lee, you won't be forgotten brother
Monday, April 18, 2011
Lee
Hello Everyone,
Just wanted to ask if you could light a candle for my friends Lee and Dana in Pasadena California. Dana just informed that they're bringing hospice in as Lee's tumor is no longer responding to Tx.
I will write more about about this later. If you care to leave any positive messages, Lee's blog can be found on my blog list under "One Quarter Blind".
This sucks...
Just wanted to ask if you could light a candle for my friends Lee and Dana in Pasadena California. Dana just informed that they're bringing hospice in as Lee's tumor is no longer responding to Tx.
I will write more about about this later. If you care to leave any positive messages, Lee's blog can be found on my blog list under "One Quarter Blind".
This sucks...
Friday, April 15, 2011
Craziness...
I guess you could say I've been really pushing the limits these last several weeks. After doing a full move up in Michigan then driving down here to Florida to do another full move with repairs and renovations mixed in at both places makes me a pretty tired dude. My back is completely torched and I have to drive back up to Michigan starting tomorrow to make my 2:20 appt. with Dr. Ramchandran on Monday. I've decided to take the Bimmer up as it doesn't have air and it's getting stinking hot down here. I've got a couple of guys in the hood back in the D that do work on it for me and another guy in Windsor Canada and I think I'm going to have them fix the air ;) Anyway, I hope the car makes it once again... It's been making some pretty strange noises lately although don't think it's anything serious. We'll see what happens...
So, as I said, I'm finally out of my old condo down here - permanently - thank God. That place has been nothing but trouble ever since I bought it in 2005. I knew it was going to be trouble after what I went through with my first two tenants. I was pretty new to renting back then and decided to take a chance on two guys just out of rehab (nothing against recovered addicts btw). The thing is, one of the guys didn't last very long in his recovery (unbeknown st to me) and his roommate moved out, breaking his lease after the first two months. The guy who apparently relapsed, Chuck, brought in another guy (again had no idea) to live with him and this guy had some serious problems. In fact, when they finally moved out and I came down to check the place out and clean it up, my neighbors told me what happened right before they bolted. I guess Chuck's new roommate went on a crack binge, went nuts, stole a car and drove it back to my place. Of course the cops showed up (I had nosey neighbors) and it was a major scene (like 5-7 cop cars I guess) and all the while, I was living out in Socal going about my business totally oblivious. Turns out, the guys were so paranoid that they bolted plywood up to the screen porch so no one could "come get them". As Whitney Houston says, Crack is Whack, haha.
I had a couple more interesting characters living there too (none as bad as Chuck and his gang thankfully). I guess one couple were running a massage business (legit I think) out of the place. It was when the last couple bolted on me (when the economy was in dire straights) that I decided to move in to my crib at Town and Country Estates. I guess I wanted to be part of the history, haha. Who would've guessed my contribution would be almost burning down the entire building, holy cats! As far as I'm concerned, that place is haunted. To make things even more interesting, the HOA board were a bunch of tyrants with the lead tyrant, Mr. Adrienne Barbe. Talking to this guy was like being a fresh army recruit taking orders from his commanding officer. Things got a little better but I won't miss dealing with all the bylaws and all the politics. This new place is so much more chill and so much more quiet. In fact, my place backs up to some rare Florida "Scrub" (13 acres of natural area made into a nature conservancy) which I guess is one of the remaining 2% in Palm Beach County. The only bummer is the train tracks that run parallel to the Scrub! Oh well, you can't have it all right?!
Amongst the craziness of the move, I was able to get down to Key West to visit some friends for a few days. While it was fun, there was some drama involved that took a little bit of lustre off the trip. Overall though, it was still fun. It's almost impossible not to have a good time in Key West!
When I returned back to Delray, it was right back at it trying to get this place together. I had no power or water for the first 2 days, very interesting... Just like I don't take anything regarding my health or physical/mental well being for granted, I will now never take things like electricity (it was basically a sweat box in here for two days), running hot water or running water period for granted. At night, I went old school and burned candles (donated by my neighbors) for light. I did get the water turned on after those two days but unfortunately the hot water tank was shot and it took me two or three days to get it going. I tried to bring the tank over from my old place but it lasted two days then died on me. I then went and bought a new one from the Home Depot and in a major bonehead move, plugged it in before it was filled with water. Luckily all I had to do was replace one of the heating elements but at that point, I had enough of the water heater situation, especially having to work in cramped space with a messed up back. I'm hoping this is why I'm having so much pain right now and it's not the cancer. Truthfully, it's probably a combination of the two that will get better once I hopefully start the trial and I have time to heal a bit. I don't think I'll ever be right with herniated discs but perhaps there's a way to make things better than they are now... I'm planning to search for a good Orthopedic Doctor who accepts Medicare in Detroit or South Florida if anyone knows of such a person. My Mom told me she has a guy so hopefully he can fix me up because I definitely need it.
I've got so much to talk about but it's starting to get late and I need some sleep before having to drive all day tomorrow.
I feel satisfied that I've pushed myself to the limits both physically and emotionally (dealing with some shocking issues this week) and made it out a stronger man in both aspects.
I'll finish by thanking my awesome former neighbors Harry and Marguerite. I feel lucky to have made friends with these fine folks. Marguerite did some Reiki on me at the pool today and it was the first time I've ever had it done. I became a little skeptical of "energy healing" but have to say, after the session, I am now a believer. I don't know what she did but while she was doing it, I got really emotional and had tears running down my cheeks that I couldn't stop, even as hardened as I am from all of this. I mostly had my eyes closed but when I opened them, there was a beautiful bird hovering above that seemed to stick around for a large portion of the session. It was almost as if I felt elevated or something, hard to explain. The emotions are real though and have never been moved to tears by someone placing their hands above my head. I hope to someday pay it forward like you mentioned Marguerite if you're reading this :)
Goodnight everyone, will update with my game plan after I meet with Dr. Ram on Monday.
Chris
So, as I said, I'm finally out of my old condo down here - permanently - thank God. That place has been nothing but trouble ever since I bought it in 2005. I knew it was going to be trouble after what I went through with my first two tenants. I was pretty new to renting back then and decided to take a chance on two guys just out of rehab (nothing against recovered addicts btw). The thing is, one of the guys didn't last very long in his recovery (unbeknown st to me) and his roommate moved out, breaking his lease after the first two months. The guy who apparently relapsed, Chuck, brought in another guy (again had no idea) to live with him and this guy had some serious problems. In fact, when they finally moved out and I came down to check the place out and clean it up, my neighbors told me what happened right before they bolted. I guess Chuck's new roommate went on a crack binge, went nuts, stole a car and drove it back to my place. Of course the cops showed up (I had nosey neighbors) and it was a major scene (like 5-7 cop cars I guess) and all the while, I was living out in Socal going about my business totally oblivious. Turns out, the guys were so paranoid that they bolted plywood up to the screen porch so no one could "come get them". As Whitney Houston says, Crack is Whack, haha.
I had a couple more interesting characters living there too (none as bad as Chuck and his gang thankfully). I guess one couple were running a massage business (legit I think) out of the place. It was when the last couple bolted on me (when the economy was in dire straights) that I decided to move in to my crib at Town and Country Estates. I guess I wanted to be part of the history, haha. Who would've guessed my contribution would be almost burning down the entire building, holy cats! As far as I'm concerned, that place is haunted. To make things even more interesting, the HOA board were a bunch of tyrants with the lead tyrant, Mr. Adrienne Barbe. Talking to this guy was like being a fresh army recruit taking orders from his commanding officer. Things got a little better but I won't miss dealing with all the bylaws and all the politics. This new place is so much more chill and so much more quiet. In fact, my place backs up to some rare Florida "Scrub" (13 acres of natural area made into a nature conservancy) which I guess is one of the remaining 2% in Palm Beach County. The only bummer is the train tracks that run parallel to the Scrub! Oh well, you can't have it all right?!
Amongst the craziness of the move, I was able to get down to Key West to visit some friends for a few days. While it was fun, there was some drama involved that took a little bit of lustre off the trip. Overall though, it was still fun. It's almost impossible not to have a good time in Key West!
When I returned back to Delray, it was right back at it trying to get this place together. I had no power or water for the first 2 days, very interesting... Just like I don't take anything regarding my health or physical/mental well being for granted, I will now never take things like electricity (it was basically a sweat box in here for two days), running hot water or running water period for granted. At night, I went old school and burned candles (donated by my neighbors) for light. I did get the water turned on after those two days but unfortunately the hot water tank was shot and it took me two or three days to get it going. I tried to bring the tank over from my old place but it lasted two days then died on me. I then went and bought a new one from the Home Depot and in a major bonehead move, plugged it in before it was filled with water. Luckily all I had to do was replace one of the heating elements but at that point, I had enough of the water heater situation, especially having to work in cramped space with a messed up back. I'm hoping this is why I'm having so much pain right now and it's not the cancer. Truthfully, it's probably a combination of the two that will get better once I hopefully start the trial and I have time to heal a bit. I don't think I'll ever be right with herniated discs but perhaps there's a way to make things better than they are now... I'm planning to search for a good Orthopedic Doctor who accepts Medicare in Detroit or South Florida if anyone knows of such a person. My Mom told me she has a guy so hopefully he can fix me up because I definitely need it.
I've got so much to talk about but it's starting to get late and I need some sleep before having to drive all day tomorrow.
I feel satisfied that I've pushed myself to the limits both physically and emotionally (dealing with some shocking issues this week) and made it out a stronger man in both aspects.
I'll finish by thanking my awesome former neighbors Harry and Marguerite. I feel lucky to have made friends with these fine folks. Marguerite did some Reiki on me at the pool today and it was the first time I've ever had it done. I became a little skeptical of "energy healing" but have to say, after the session, I am now a believer. I don't know what she did but while she was doing it, I got really emotional and had tears running down my cheeks that I couldn't stop, even as hardened as I am from all of this. I mostly had my eyes closed but when I opened them, there was a beautiful bird hovering above that seemed to stick around for a large portion of the session. It was almost as if I felt elevated or something, hard to explain. The emotions are real though and have never been moved to tears by someone placing their hands above my head. I hope to someday pay it forward like you mentioned Marguerite if you're reading this :)
Goodnight everyone, will update with my game plan after I meet with Dr. Ram on Monday.
Chris
Monday, April 11, 2011
Checking In
Just wanted to let everyone know I'm ok and doing fine. Just have been a little overwhelmed with everything lately and have taken a break from posting due to two moves in two weeks and the lack of internet access.
I'm having a lot of problems with my back which I'm sure have been exasperated by the moves.
I'm handling the uncertainty of the future relatively well and have decided to enter into the RAD001 (Everolimus) trial at Karmanos in Detroit if my blood counts cooperate. I'm worried as the platelet cutoff to get in is 75,000 and I've been struggling every time to get to 50,000. Hopefully the time off SAHA has allowed my counts to recover... The plan is to meet with Dr. Ramchandran on the 18th and if everything works out, I start the trial that same week. Once again, prayers and good vibes solicited here.
On another note, just wanted to send some well wishes to Rich, my step dad. He's been having issues with fluid in his lungs and heart issues. He's been in the hospital and I know not enjoying any of it. Get better Rich!
Hoping to find some mojo to post an interesting post soon...
Chris
I'm having a lot of problems with my back which I'm sure have been exasperated by the moves.
I'm handling the uncertainty of the future relatively well and have decided to enter into the RAD001 (Everolimus) trial at Karmanos in Detroit if my blood counts cooperate. I'm worried as the platelet cutoff to get in is 75,000 and I've been struggling every time to get to 50,000. Hopefully the time off SAHA has allowed my counts to recover... The plan is to meet with Dr. Ramchandran on the 18th and if everything works out, I start the trial that same week. Once again, prayers and good vibes solicited here.
On another note, just wanted to send some well wishes to Rich, my step dad. He's been having issues with fluid in his lungs and heart issues. He's been in the hospital and I know not enjoying any of it. Get better Rich!
Hoping to find some mojo to post an interesting post soon...
Chris
Friday, April 1, 2011
Lee
Just got this email as I'm driving down to Florida, I feel sick. If you have a candle, please light it for my friend Lee McPherson who happens to be a true warrior and hero.
As many of you know (forgive me if you don't know, I can't keep track of who I've gotten in touch with), Lee had a seizure about a month ago. An MRI showed that there was a new spot and further progression of the tumor. Lee has been struggling to recover from the seizure and seemed to be improving until about two weeks ago when Kathy (Lee's Mom) and I noticed that he seemed to be having more trouble with his right side, with balance and with communication.
Lee had a follow-up appt. (he started a new chemo recently) with one of our oncologists (Dr. Nassir) yesterday- Dr. Nassir was concerned enough with Lee's condition that he wanted to admit him to Cedars (Lee refused), and compromised with an MRI scheduled for today.
We had the MRI at 10, and a follow-up appt with our regular doctor, Dr. Rudnick. Today's MRI showed that within the space of month the tumor has progressed significantly. It is now progressing in two ways- enhancing and non-enhancing, both aggressively. At this point Dr. Rudnick gave us a couple of options:
1. radiation of Lee's entire brain- this can lead to compromised thinking, and an essential change to who Lee is.
2. a combination of an experimental drug (Vrinistat) and Accutane (yes, an acne medication, but it has shown some ability to work on some cancers)
3. another combination two different chemos
*there is a 7-15% chance that Lee will respond well to the above chemo treatments
4. do nothing more in the way of treatment of the cancer
This decision is ultimately up to Lee and we are taking the weekend to talk/think about it. We have an appointment with Dr. Rudnick Monday to talk about what we want to do next.
Lee is really tired and struggling to get around and communicate, but if you would like to come by and see him or send him an email, I know that he would appreciate that you are thinking of him. It might be a good idea to call first if you are thinking of coming by this weekend, as we have a lot to deal with in the next day or two.
I hope that I haven't forgotten anyone, and that I've been clear about what is going on- details, etc. Let me know if you have any questions, I'll try and answer them and I'll keep everyone posted as things develop.
Dana
As many of you know (forgive me if you don't know, I can't keep track of who I've gotten in touch with), Lee had a seizure about a month ago. An MRI showed that there was a new spot and further progression of the tumor. Lee has been struggling to recover from the seizure and seemed to be improving until about two weeks ago when Kathy (Lee's Mom) and I noticed that he seemed to be having more trouble with his right side, with balance and with communication.
Lee had a follow-up appt. (he started a new chemo recently) with one of our oncologists (Dr. Nassir) yesterday- Dr. Nassir was concerned enough with Lee's condition that he wanted to admit him to Cedars (Lee refused), and compromised with an MRI scheduled for today.
We had the MRI at 10, and a follow-up appt with our regular doctor, Dr. Rudnick. Today's MRI showed that within the space of month the tumor has progressed significantly. It is now progressing in two ways- enhancing and non-enhancing, both aggressively. At this point Dr. Rudnick gave us a couple of options:
1. radiation of Lee's entire brain- this can lead to compromised thinking, and an essential change to who Lee is.
2. a combination of an experimental drug (Vrinistat) and Accutane (yes, an acne medication, but it has shown some ability to work on some cancers)
3. another combination two different chemos
*there is a 7-15% chance that Lee will respond well to the above chemo treatments
4. do nothing more in the way of treatment of the cancer
This decision is ultimately up to Lee and we are taking the weekend to talk/think about it. We have an appointment with Dr. Rudnick Monday to talk about what we want to do next.
Lee is really tired and struggling to get around and communicate, but if you would like to come by and see him or send him an email, I know that he would appreciate that you are thinking of him. It might be a good idea to call first if you are thinking of coming by this weekend, as we have a lot to deal with in the next day or two.
I hope that I haven't forgotten anyone, and that I've been clear about what is going on- details, etc. Let me know if you have any questions, I'll try and answer them and I'll keep everyone posted as things develop.
Dana
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