Wednesday, April 9, 2008
Friends Of Richie II: 4/27/2008
For those looking at this on Lynx or are sight-impaired and using a screen scraper program, here's the pertinent details in text:
Friends Of Richie II
A celebration of the life of Richie Hass
Sunday, April 27th
The Echoplex
1154 Glendale Blvd.
Echo Park, CA, USA
Doors open 4pm
Music starts 4:30pm
Gig will go from 4:30-11pm
Lineup:
Headliners: Saccharine Trust
With
The Probe
ChromoSphere
The Lofty Canaanites
Bag: Theory
The Amadans
FreeHead
Fatso Jetson
Admission: $7, with proceeds going to the International Myeloma Foundation.
Friday, March 21, 2008
Richie Hass 1952-2008
Apparently the relapse hit Richie way harder than we thought it would...the blow was lethal. The fight is now over and Richie went as a warrior.
This morning, Richie and I said "see you later" as he went out to City of Hope to get his chemo. He drove there, he drove back, and I got to talk to him when he got home as I was on my way to an important meeting with a specialty employment agency. If it weren't for cellular phones we probably wouldn't have talked then. I was glad he made it home safely...Richie's weakened condition always made me nervous. That was 1pm. At roughly 1:30 he called me to remind me that I needed to pick up some nutritional drinks for him on the way back...I think he called because he wanted to hear my voice one last time, and it was good to hear his voice too. I was totally unaware that he really was hearing my voice for the last time.
After the meeting, which was highly promising, I called to let Richie know how well it went. I got the answering machine. I called back a few minutes later, thinking that perhaps he was just answering nature's call. Answering machine. I called a few minutes later, hoping that maybe I just caught him sleeping deeply. Answering machine again. Oh SHIT.
I told the answering machine that I was going straight home to check on him, that I'd go right back out to get the "boosts" (we had fallen into the habit of calling nutritional supplement drinks "boosts" generically after the particular name brand "Boost.") after I had made sure he was OK.
Got home. Not OK. Not there anymore. I got on the horn to 911 immediately, and within a few minutes (911 is not a joke in Panorama City, thank you Fire Station 7, thank you Mission Division LAPD) the paramedics were there. They confirmed what I already knew, and what I was trying to tell the 911 operator who was trying to lead me through CPR. That ship had sailed.
However, it is very important to note that Richie went HIS WAY. He didn't want me to see him die. We had watched together as my mother passed painfully and fearfully from end-stage colon cancer. He didn't want to inflict that on me. He didn't want to die in a hospital, not even one as inviting and hotel-like as Helford Clinical Research Hospital at the City of Hope.
I don't believe in an afterlife anymore, no matter how inviting the concept is, but I think there was a little of his essence hanging around as I made it abundantly clear to all family members who I talked to that no, Richie didn't want to have a Jewish funeral, he didn't want people to sit shivah for him, he didn't want to be buried at Mount Sinai with the rest of the Good and Klein clans, he just wanted to be cremated, and have half his ashes scattered in the Pacific Ocean and half scattered on the Hudson River, within view of the coastline of the New Jersey of his youth. He felt like half of him was East Coast and half of him was West Coast and that somehow he would be present on both coasts in his passage. Amazingly, nobody objected. They objected mightily when I told my family that I didn't think that my mother wanted an open casket to see her emaciated body after her year of battling colon cancer, and they had an open casket over my objections. This time they acceded to my wishes, and most importantly to Richie's wishes.
So he has passed out of existence his way. Unfortunately it was way too early and way too young but at least he did it on his own terms. There is a hole rent in my heart now that will never heal. It's like why gangbangers tattoo tears on their faces...they have tears that will never dry and so will I from here on out. However, to make this death not be in vain, I pledge the rest of my life to work towards supporting research to find cures to all blood cancers. All of them. Myeloma sucks and so does Acute Myelogenious Leukemia. So do the other varieties of leukemia and lymphoma. They all must be terminated with extreme prejudice. Richie is gone but there are thousands and thousands fighting this battle too. Saddle up, lock and load. Blood cancer is the enemy, and the war isn't over.
This morning, Richie and I said "see you later" as he went out to City of Hope to get his chemo. He drove there, he drove back, and I got to talk to him when he got home as I was on my way to an important meeting with a specialty employment agency. If it weren't for cellular phones we probably wouldn't have talked then. I was glad he made it home safely...Richie's weakened condition always made me nervous. That was 1pm. At roughly 1:30 he called me to remind me that I needed to pick up some nutritional drinks for him on the way back...I think he called because he wanted to hear my voice one last time, and it was good to hear his voice too. I was totally unaware that he really was hearing my voice for the last time.
After the meeting, which was highly promising, I called to let Richie know how well it went. I got the answering machine. I called back a few minutes later, thinking that perhaps he was just answering nature's call. Answering machine. I called a few minutes later, hoping that maybe I just caught him sleeping deeply. Answering machine again. Oh SHIT.
I told the answering machine that I was going straight home to check on him, that I'd go right back out to get the "boosts" (we had fallen into the habit of calling nutritional supplement drinks "boosts" generically after the particular name brand "Boost.") after I had made sure he was OK.
Got home. Not OK. Not there anymore. I got on the horn to 911 immediately, and within a few minutes (911 is not a joke in Panorama City, thank you Fire Station 7, thank you Mission Division LAPD) the paramedics were there. They confirmed what I already knew, and what I was trying to tell the 911 operator who was trying to lead me through CPR. That ship had sailed.
However, it is very important to note that Richie went HIS WAY. He didn't want me to see him die. We had watched together as my mother passed painfully and fearfully from end-stage colon cancer. He didn't want to inflict that on me. He didn't want to die in a hospital, not even one as inviting and hotel-like as Helford Clinical Research Hospital at the City of Hope.
I don't believe in an afterlife anymore, no matter how inviting the concept is, but I think there was a little of his essence hanging around as I made it abundantly clear to all family members who I talked to that no, Richie didn't want to have a Jewish funeral, he didn't want people to sit shivah for him, he didn't want to be buried at Mount Sinai with the rest of the Good and Klein clans, he just wanted to be cremated, and have half his ashes scattered in the Pacific Ocean and half scattered on the Hudson River, within view of the coastline of the New Jersey of his youth. He felt like half of him was East Coast and half of him was West Coast and that somehow he would be present on both coasts in his passage. Amazingly, nobody objected. They objected mightily when I told my family that I didn't think that my mother wanted an open casket to see her emaciated body after her year of battling colon cancer, and they had an open casket over my objections. This time they acceded to my wishes, and most importantly to Richie's wishes.
So he has passed out of existence his way. Unfortunately it was way too early and way too young but at least he did it on his own terms. There is a hole rent in my heart now that will never heal. It's like why gangbangers tattoo tears on their faces...they have tears that will never dry and so will I from here on out. However, to make this death not be in vain, I pledge the rest of my life to work towards supporting research to find cures to all blood cancers. All of them. Myeloma sucks and so does Acute Myelogenious Leukemia. So do the other varieties of leukemia and lymphoma. They all must be terminated with extreme prejudice. Richie is gone but there are thousands and thousands fighting this battle too. Saddle up, lock and load. Blood cancer is the enemy, and the war isn't over.
Friday, March 14, 2008
Slight return...
It's back. The remission had a good run, but myeloma is a wily beast that changes its spots regularly.
There's an excellent chance of this being beaten down once again with perhaps the same protocol used in induction therapy: Velcade, Doxil and Dextamethasone. The induction therapy was stopped because it was working so well they achieved a remission, not because the therapy had stopped working.
I had written here that there was not a lot found. This was my mistake, I misunderstood what Richie had said. There is a pretty big concentration of mutant cells in the sample, (60%) although the fact that the M-Spike is only 1.0 leads the doctor to suspect he hit a pocket of mutant cell activity with the biopsy.
One fact which militates in favor of a rapid return to remission after treatment: Richie is in better physical shape now than when he first presented at City of Hope in late January 2007.
Keep thinking good thoughts, praying, or whatever for him. That always helps.
There's an excellent chance of this being beaten down once again with perhaps the same protocol used in induction therapy: Velcade, Doxil and Dextamethasone. The induction therapy was stopped because it was working so well they achieved a remission, not because the therapy had stopped working.
I had written here that there was not a lot found. This was my mistake, I misunderstood what Richie had said. There is a pretty big concentration of mutant cells in the sample, (60%) although the fact that the M-Spike is only 1.0 leads the doctor to suspect he hit a pocket of mutant cell activity with the biopsy.
One fact which militates in favor of a rapid return to remission after treatment: Richie is in better physical shape now than when he first presented at City of Hope in late January 2007.
Keep thinking good thoughts, praying, or whatever for him. That always helps.
Thursday, March 6, 2008
Uh-oh...
OK, here's what's going on. For the past 5 weeks Richie has been trying to shake the nasty epidemic strain of flu that's been circulating. Apparently it seems like this has given Darth Myeloma the opportunity to emerge. The last few M-spike readings (December, January, February) have been "Trace Band" readings, where there is not enough present to get an accurate level. However, last Thursday's blood draw now shows an M-spike of 1.0.
Because of this stubborn flu, which has also affected Richie's right ear because of fluid buildup in the Eustachian tube, the doctor has been monitoring him more closely. Yesterday and today he had to go back to City of Hope. The trip yesterday was for a CAT scan of his sinuses and a chest x-ray, (he has a stubborn cough) and the trip today was for a consult. His blood was drawn again today and his hemoglobin was low enough to where the doc gave him a pint of blood. The doc also had him undergo a bone marrow biopsy to see what the actual cells are looking like deep down.
Richie's doctor's philosophy is simple: if the multiple myeloma is emerging from its beaten-down state, then it's time to lay the smack down on it ASAP. Richie is still strong enough to where aggressive treatment is fine.
Alas, that cannot be said for a musician friend of ours who is sliding downhill fast with acute myelogenious leukemia. Dude's in ICU and his liver and kidneys are failing. The guy had diabetes on top of the leukemia, and was not in the best of health before getting the diagnosis, so he was fairly compromised from the get-go. I don't think he's going to be long for the world. In the words of Nigel Tufnel, "Too much bloody perspective." Whatever is going on with Richie, he has the strength to fight it. At least I hope, anyway.
UPDATE: our friend Dale Upton died the day after this post was made. AML is a fast moving cancer. And the pre-existing diabetes made matters very, very much worse. At least he's not suffering anymore.
Because of this stubborn flu, which has also affected Richie's right ear because of fluid buildup in the Eustachian tube, the doctor has been monitoring him more closely. Yesterday and today he had to go back to City of Hope. The trip yesterday was for a CAT scan of his sinuses and a chest x-ray, (he has a stubborn cough) and the trip today was for a consult. His blood was drawn again today and his hemoglobin was low enough to where the doc gave him a pint of blood. The doc also had him undergo a bone marrow biopsy to see what the actual cells are looking like deep down.
Richie's doctor's philosophy is simple: if the multiple myeloma is emerging from its beaten-down state, then it's time to lay the smack down on it ASAP. Richie is still strong enough to where aggressive treatment is fine.
Alas, that cannot be said for a musician friend of ours who is sliding downhill fast with acute myelogenious leukemia. Dude's in ICU and his liver and kidneys are failing. The guy had diabetes on top of the leukemia, and was not in the best of health before getting the diagnosis, so he was fairly compromised from the get-go. I don't think he's going to be long for the world. In the words of Nigel Tufnel, "Too much bloody perspective." Whatever is going on with Richie, he has the strength to fight it. At least I hope, anyway.
UPDATE: our friend Dale Upton died the day after this post was made. AML is a fast moving cancer. And the pre-existing diabetes made matters very, very much worse. At least he's not suffering anymore.
Monday, January 7, 2008
M-spike is down and staying down!
The M-spike is the specific marker for multiple myeloma. It is secreted by mutant plasma cells, and Richie's initial value was close to 9.0. Once the initial Velcade/Doxil/Dextamethasone treatments were given, the M-spike dropped first to around 3.5, then to 1.5, then down below 1.0 to where it's pretty much been since June. In December, the M-spike was down to a point where it's referred to as being a "trace band" where the actual value is so low it cannot be reliably measured. Basically the take home message is that the myeloma has been knocked down to molecular remission. It's still there...cowering in the shadows, waiting for a moment when Richie weakens and it can pounce. But it has been effectively beaten down to the point where it is at a standstill. On the 10th it will be four months since the transplant. Awesome.
Wednesday, December 26, 2007
Survivor day: 12/26/2007
This is the anniversary of when Richie was diagnosed with multiple myeloma. Richie is doing fine...yesterday we took a walk between our house and about 2/3 of the way to the hospital at which Richie was diagnosed, and I was more winded than he was.
Two more of our friends were diagnosed with cancer recently. One has a blood cancer that's basically a kissing cousin of what Richie has, the other has prostate cancer which I lost an uncle to a few years ago.
I know that Richie isn't out of the woods...it was explained to us that the only way to know that you have beaten multiple myeloma is to die of unrelated causes. Sort of like what happened to Peter Boyle...he died of a heart attack unrelated to his myeloma. However, we are quite hopeful for the future. Things aren't perfect: there are limitations we'd like to learn to work around right now. The maintenance meds that Richie's on need tuning, which is something to be expected considering that it's a new regimen.
It is likely we will not be updating this site in a while, but every now and again I'll post some bits about Richie's progress. Also there's the album recorded at the benefit gig...it'll come out. Eventually.
Two more of our friends were diagnosed with cancer recently. One has a blood cancer that's basically a kissing cousin of what Richie has, the other has prostate cancer which I lost an uncle to a few years ago.
I know that Richie isn't out of the woods...it was explained to us that the only way to know that you have beaten multiple myeloma is to die of unrelated causes. Sort of like what happened to Peter Boyle...he died of a heart attack unrelated to his myeloma. However, we are quite hopeful for the future. Things aren't perfect: there are limitations we'd like to learn to work around right now. The maintenance meds that Richie's on need tuning, which is something to be expected considering that it's a new regimen.
It is likely we will not be updating this site in a while, but every now and again I'll post some bits about Richie's progress. Also there's the album recorded at the benefit gig...it'll come out. Eventually.
Thursday, November 8, 2007
Almost 2 months since transplant: good news!
Tuesday Richie got some excellent news: he is officially in remission. This time it really, really IS official. Three clear bone marrow biopsies sort of equal remission by most criteria in judging cases of multiple myeloma. They have started him on maintenance therapy: Thalidomide/Dex/baby aspirin + Zometa IV once a month. This will continue for the foreseeable future. Since he only needs the IV once a month, they are not installing another port, be it a PICC line or a Hickman.
Richie's energy level is improving big time. He's still not 100% but he's looking at recapturing more of the energy levels he used to have rather than settling for some sort of "new normal." I have told him this is not necessarily so realistic considering I will never get back to anything above a "new normal" level of energy after my bouts with Chronic Fatigue Immune Dysfunction Syndrome. He is likely to not ever get back to the 100% mark he was at pre-mm. He might get to 80%, he might get to 90%, heck, he might even get to 95% or better but he will never be the same.
Thanks to everyone for their support.
Richie's energy level is improving big time. He's still not 100% but he's looking at recapturing more of the energy levels he used to have rather than settling for some sort of "new normal." I have told him this is not necessarily so realistic considering I will never get back to anything above a "new normal" level of energy after my bouts with Chronic Fatigue Immune Dysfunction Syndrome. He is likely to not ever get back to the 100% mark he was at pre-mm. He might get to 80%, he might get to 90%, heck, he might even get to 95% or better but he will never be the same.
Thanks to everyone for their support.
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