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.

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.

T+24: Looking good!

Richie went back for his week-after-release checkup, and his numbers remain in normal range. Dr. Forman is very, very happy with his progress, so much so that he told him the next checkup would be in three weeks rather than next week or the week after.

I forgot to send Richie with a list of questions from me, but I have Dr. Forman's email somewhere and I should email him my questions.

We have a box of face masks but basically Richie's immune system is settling in so well Dr. Forman thinks he can go about his everyday business without worrying about germs. He also doesn't have any more restrictions on his diet...fresh fruit and veggies are back on the menu.

I still have to get those shots though. Ugh.

T+18: Back Home

We're home now. Richie is actually doing better than I am this morning and slept better last night. He got up early this morning and started the van...it sprung to life as if it hadn't been sitting for 3 !/2 weeks.

He seems none the worse for the less sanitary conditions here.

He will still have to deal with having a "baby immune system" for the next few months. Eventually he'll need to be revaccinated, and I am going to have to get all my adult shots as if I was going overseas. Ouch.

Anyway, I'm not a morning person, I still feel tired, so I'm going back to bed. Once I get up for good, I've got a lot to do.

T+16 and T+17: three to get ready...

If you didn't get it, the last entry's subject line was a reference to the song "I Shall Be Released." And today, theoretically, is indeed the day Richie should be released from CoH. Dr. Forman confirmed it, and so have several other staff in the hospital, who have been dropping by and giving their best wishes.

Of course, it could be delayed for another day. If it is we're all screwed, because neither Richie nor I have extra clothes and I only brought enough meds for last night. Tim Snyder will be picking Richie up at 4pm. I suppose if he comes out for nothing it wouldn't be that bad...he only lives a few minutes away from here. I will also run out of cash (not money, thankfully) if I have to stay here another night.

The sticking point is the Hickman catheter. It's coming out before Richie leaves. With the staph issue it's a must.

So, keeping fingers crossed. Richie is rarin' to leave here. So am I. In fact, if it looks like there will be a delay I will have to leave, Richie or no Richie.

The waiting is the hardest part.

T+14 and T+15: Any day now, any day now...

So Richie now has his release date: Thursday.

The Hickman Catheter will be removed before that. If there will be a need for maintenance chemo, Richie will get another PICC line. The fact that the Hickman leads directly into the heart, and that he got a mild dose of staph infection at the entry site, suggests that for safety's sake the catheter has got to go. And this is not staph you can get from the outside: it's one of those nasty hospital strains. This suggests that, even though our house is a bit cluttered and not a showplace cleanliness-wise, we were able to keep Richie's vein access devices (VADs) nice and sanitary.

I don't have numbers now, but according to Dr. Forman he's pleased with Richie's progress.

By necessity, I'm playing hookey from College today and Thursday. I will have to go to CoH on Wednesday so that I can be there and help on Thursday.

T+13: too much!

OK, so maybe the Neupogen worked a little too well. On the 13th day after transplant, Richie's white blood cell count is now at 13. Remember I mentioned that normal is between 4 and 11? Other good stuff: platelets and red blood cells are in normal territory for the first time.

The last hurdle before we take Richie home is eating. Richie needs to be able to eat well before they let him go. He will not be taking home the big bag of IV formula. This is easier said than done because Richie's throat and other mucous membranes are still inflamed and peppered with sores...the sores are healing but they're still there. It is likely that a six or seven mini-meal approach will be better for him than three squares.

I'm going home this afternoon...I have tons of stuff to do between Monday and Thursday. However, everything changes when Richie needs to go home. I might have to take an absence that day if it happens on a school day. Hoping for 8 hours of sleep and a nice shower. I was able to shower in the Village on Saturday and back at home on Friday, but this morning I'm feeling the need for another one.

T+11 and T+12: off the air for a while

Patient network difficulties made it impossible to post for about a 24-hour period. However, the news that's been awaiting the restoration of the network access is good: Richie's white blood cell count is now in normal range. Thursday he was at 0.2, Friday he was at 2.9, and now he's at 6.6. Normal is between 4 and 11.

The last thing he needs to do is to get back the ability to eat real food again. He has been being maintained on what can only be described as an intravenous "formula" which includes amino acids, vitamins, minerals, dextrose and electrolytes. He's eaten some things, but he's not been eating 3 normal-sized meals or six small but substantial meals. He must get to that point before he can be discharged, no matter what his white blood cell count says.

Yesterday was his birthday. I owe him dinner at Coco's. Now that he's 55 years old, he can order from the Senior menu. w00t.

T+10: Back at CoH

Richie has been through the Nadir point and hopefully is coming out the other side. His white blood cell count, although not normal, is on its way up. He's still having problems with mucous tissue inflammation and with a few mouth sores, but those are healing up. He's certainly better than he was when last I wrote here...sorry about being remiss about keeping up the updates.

Tomorrow is Richie's birthday. We are both confident there will be many more to come. It's 10 days past his "second birthday" as some people with multiple myeloma refer to the day they get their stem cells back in an SCT. While we won't go so far as to say this is like being reborn, (after all he was born right the first time!) this is definitely a turning point.

I have to go back to the Valley tomorrow to grab a few things I forgot (3 hours there, 3 hours back, oy gevalt...) but I intend to be back later in the day and spend the rest of his birthday with him.

I wonder if I can get him cake. Or something. He has the keyboard, at least, and that delighted him...thanks Tom. Thanks also to Bruce for visiting and bringing a few CDs for Richie's listening pleasure. Thanks to all who have been calling and emailing and generally rooting for him. We appreciate it. A lot.

Still T+7, with news of keyboard arrival and improvement in Richie's status...

The keyboard arrived at exactly 1pm. It's in good shape, it's got 61 working keys, it has a great sampled piano sound, a fully General MIDI compliant sound set plus a bunch of extra sounds. This freed me up to get out to the local Mart Of Evil (it's within walking distance and Target is not, and besides Target is almost as bad with jawboning suppliers and mistreating employees as Wally*World is) to grab a few items that were needed.

The next time I stay at the City of Hope, I will sleep on an air bed instead of the torture device masquerading as a fold out chair bed. Richie will have all the underwear he needs for the rest of his stay. I now have a new soapy brush to wash dishes with...the one I was using was in bad shape and prolly loaded with bacteria.

I had better get some sleep. Tomorrow's a big day at school.

T+7: I'm back at home, Richie isn't.

It's been a week since the transplant, and Richie is still in that "no fun" time where you get socked by the side-effects of the Melphalan. Richie ran a fever last night, which broke this morning. He is still feeling the sore throat from hell, however, and could only talk in short bursts until his throat got too painful and he had to rest his larynx. However, this is all to be expected in an SCT at this stage.

The ability to bi-locate would be a great supernatural talent to have. Unfortunately this is not AD&D, where if you have the right spell in your spellbook you can do it. I can only be one place at a time, and here is where I have to be.

As it is, being at City of Hope, I missed the delivery of Richie's keyboard. So one of the things keeping me here is waiting for FedEx Ground to deliver the damn thing. They are the abject WORST at keeping to a schedule. I remember when my refurbished ThinkPad 600e was being delivered from San Diego (San Diego! Just down the coast from me!) I waited a whole fucking day to get my package. A whole fucking day of having to be hypervigilant, lest FedEx play "ding dong ditch" with the package.

Anyway, the bastards have until 4pm. That's it. I'm leaving at that point, to go to Woodbury. I have to iron out some final things with the Business Office, and I also have a class to attend.

At least I was able to get a good night's sleep last night/this morning. That felt good.

T+5, T+6: now the tough part begins

As much as I had hoped Richie would be spared the worst of the side-effects of a Stem Cell Transplant, he's getting hammered right now. WBC is down to 0.2. He's down platelets and Hemoglobin, so he's going to be getting a pint of blood. Another thing Richie is getting today is more Neupogen. This time it's not being injected, but infused with the rest of the stuff he's getting through the Hickman. Hopefully he won't get too much bone pain but he had a little with the Neupogen when he was self-administering it leading up to and during the stem cell collection.

He also got nailed with some really sad news: a person we haven't been extremely close to, but with whom we have been "good acquaintances" for years, is dying of liver failure after years of hard drinking and hard living. He was in County+USC for a while but is being discharged to die at home under Hospice care. It's way too much like how we lost the drummer of Richie's old band The Beatniks.

Brian O'Laughlin was a sweet guy who was a great drummer...you would have to be to be able to play the kind of complex drum parts Richie wrote. The poppy feel of Richie Hass and the Beatniks was deceiving: like a lot of really good pop, it was way harder to play and way more complex than it would initially "read" to your ear. Brian was also a stone-cold geek...he was online before I was, with a Commodore 64 and a 300bps modem...you could see words coming in when using one of those, it was amazing. Slow as shit, but impressive back when not much existed outside of business.

Anyway, Brian slipped away from us in a matter of a week...he had been hospitalized for jaundice as a consequence of Cirrhosis and it became clear he wasn't going to live very much longer after that. It hit him about a month after he finally started getting serious about cleaning up. He was going to AA meetings and had kept sober. Then this happened. Damn...that's got to be the worst addiction of all: alcohol. I am not for prohibition of any substance, but I think people have their priorities 100% screwed up wrt substance addiction. You can kick cocaine, you can kick crank, you can kick opiates, but damn, man...the booze is really freaking rough. Keith Richards still drinks like a fish even after getting off of the other stuff he was poly-addicted to. He's also outliving everyone's expectations, go figure.

Richie has luckily escaped the traps of addiction which have snared so many musicians through the decades. His core healthiness aside from the multiple myeloma has served him well through most of this process. However, this is a serious, severe process. In the past 20 years, City of Hope has not lost a single patient through the SCT process, but many feel like crap for a long time during the process. I was hoping it wouldn't be the case, but it may very well be that this is the tough time for him. And I'm going to have to bail today so that I can get some stuff done tomorrow and go to school tomorrow night, Tuesday and Thursday. I feel badly I can't stay with him longer, but it's impossible. I need to be back for a while. I hope he doesn't resent me for leaving me when he's needed me the most. Those of you who know where he is and know how to contact him...please do. He needs all our support right now.

T+4

I'm back at CoH. Richie's energy level is not great, but we managed to do a few laps around the wing before he decided it was time for some rest. His appetite was OK at breakfast time, but not so great at lunch.

Tomorrow the protocol indicates he is to receive some Neupogen to kick-start the new bone marrow. As you recall, he had really good responsiveness to the stuff when they were mobilizing stem cell production for harvest, so this will probably have a similar response. His white blood cell count is not down to zero, but it's at 1.0 which is pretty close.

I'll keep y'all posted.

T+3

Richie sounds really good today. He slept a lot, but after staying up all night with the hiccups some good sleep is just what the doctor ordered. They found something that worked to suppress the hiccup reflex, so sleep came easy for him.

Before I called him this evening he was up and around...he walked three times around the wing of the hospital.

Tomorrow I go to Duarte. I want to get out of here as early as possible. Gotta drop by the ATM, then it's time to grab the bus out. It takes me three buses -- one is a dedicated busway and so it's more like light rail -- a subway and one real light rail line to get there, and it takes something like 3 hours time-wise. But it's doable. Difficult but not impossible.

Off and on, I'm spending the weekend there. I will go out to Downtown for the Wired Next Fest and a LinuxChix LA meeting on Saturday, but I will get back to Duarte after that. Hopefully I won't get stuck in Pasadena...eep...

Rough night: T+2

The hiccups that were a minor concern earlier last night have become a major quality of life issue this morning. Richie can't sleep, I can't sleep because of the worry, and apparently the worst is yet to come. These uneventful days are only precursors to what will happen when his white blood cell count "hits the nadir point." That's expected in 3-5 days.

I guess I should say "bring 'em on" because the sooner he gets through the worst of this, the sooner he can start regaining his strength. Still, it's rough on the both of us.

Live from CoH: T+1 and counting

It's 11pm. I'm here at CoH and I am spending the night. Richie is doing OK save for a little nausea (controlled) and the hiccups (still going). The white blood cell counts haven't bottomed out yet. I wonder if they could just stay where they are or climb or something?

This is very new to the both of us.

Yesterday: second dose of Melphalan. Today: cells returned

I failed to update yesterday because by the time I got home from Duarte it was 9:20pm and I was tired.

I visited Richie yesterday, and while the Melphalan was no picnic, he seemed to be in good spirits and well enough to take a little stroll through the wing of the hospital. Yes, he is allowed to get out of his room and walk around, and this is because of the unique design of Helford Clinical Research Hospital.

Normally sterile rooms are kept sterile one room at a time. The sterile room is approached from a two-door vestibule which serves as an "airlock." The patient is confined to that one room for all of their treatment. When Helford was constructed, it was designed from the ground up to have two floors with two sterile wings each. Each wing is entered from a double-door vestibule. The air beyond the second door is filtered, and anti-microbial surfaces are used wherever possible.

While in the patient room, the visitor needs to "wash up, glove up, and mask up" in order to provide an added measure of safety while the patient's immune system rebuilds. While outside the room, but within the sterile wing, the patient "gloves up and masks up" to protect themselves. Visitors and nurses do not need to wear gloves and masks outside the room.

Richie is getting the stem cells today. Hopefully all is going well. I called him this morning and he was still waking up. Neither of us are good in the morning, and I'm sure the chemo doesn't help. I will update when I find out how he's doing.

Dose 1, Melphalan

Well, I'm at Hass Manor instead of CoH because last night I got almost no sleep. A random guy who identified himself as being from Children's Protective Services tried to gain access to the building through the security gate. I sensed an attempt by someone misrepresenting himself to "socially-engineer" his way into the building. I did not let him in, and called 911 asking if there was a legitimate Law Enforcement officer attempting to gain access to the building. They said "no." My spider-sense didn't fail me. However, I was so shaken up by the incident I couldn't sleep very well. Today I am totally dragging ass. Bleah. No 3 hour rides to and from Duarte for me today. I'm going to take a nap later and then see how I am later. I'm going to get Richie a headphone amp at Guitar Center.

Richie is actually quite happy to talk on the phone. Verizon says our landline can make unlimited calls all over the US with the package we have. I'm gonna hold them to it, because Duarte is a toll call. Richie got the Melphalan this morning and he's actually not doing too badly with it. They are taking a lot of precautions to make sure he doesn't get the mouth ulcerations, the nausea and vomiting, and the diarrhea. He was getting ready to eat lunch when I called...it hasn't affected his appetite yet either.

Our good friend Tom Reed answered the call for the keyboard. He's bought one on eBay and it should get here soon. Thanks, dude.

Hopefully I will see Richie tomorrow. I hope that this asshole doesn't try to gain access to the apartment building again. I think I will sleep in clothes tonight in case I have to deal with this guy directly.

Live from City of Hope...check-in day

Here's what's going to be happening. Richie is checking in today, and will be "primed" with a saline IV. Tomorrow and the next day he gets high-dose Melphalan which will basically kill the bone marrow. Then on Monday he starts getting his stem cells back. No radiation needed for him, apparently.

Dr. Forman said he could bring his guitar and anything else he wanted, so he has his purple Strat, with no amp, and a practice pad and sticks. It would be a good thing if we could find a headphone amp for him...it doesn't have to be a Scholtz Rockman which is apparently made of unobtainium and very expensive. It can be something cheesy and Chinese. It's just so he can hear himself when he plays.

I think he would also like a keyboard. Probably something that can be battery powered would be best because IT is very picky about what it allows to be plugged in in Helford Clinical Research hospital. It's understandable...shorts and stuff. However, Richie is very picky on his end. So a bitty Casiotone wouldn't get it. Something that's got full-size keys and a few octaves is what would be best. The Casio he passed on to Jim Smith is battery powered and has full-size keys...61 of them. He'd prefer 88, but people in Hell want ice water.

Of course, if he's feeling like crud from the Melphalan (very likely, it's old-school chemo that is very harsh) he'll probably want to just crash for a while.

Oh yeah, funny movies on DVD would probably be helpful.

I will be giving out his direct number on a need-to-know basis. Anyone else can call the landline or my mobile and I will pass messages to him.

Will update tomorrow if not later today.

A really cool article about the benefit...

I don't know why I didn't see this before now, but Richie found this while googling his name:

The Friends Of Richie Benefit Story

The article was written by Scott Heustis, the guy who organized the benefit. The man's an angel. He did a great job and the benefit was a rousing success.

We're doing OK now, but any time we have to go out in the heat it's murder. We have some errands to do tonight, still. However, we want to wait until things really cool down.

OK, starting this up...

I know that City of Hope has pages set up for patients there, but this is easier for me.

The idea of this site is so that people can find out, at a glance, what's going on with Richie and his treatment. He's going in for a Stem Cell Transplant on September 7, and hopefully he will have as good of luck with this part of his treatment as he has with the treatments he's had before.

Here's the history of Richie's illness.

• November, 2006: Richie starts having mysterious fatigue. It wasn't a flu. It didn't lift. As someone who has survived Chronic Fatigue Immune Dysfunction Syndrome, I dreaded that maybe Richie had gotten the mysterious "factor X" that caused my disease.
  
• December 20, 2006: Richie was admitted to Mission Community Hospital with unexplained anemia far below normal.
  
• December 26, 2006: Richie gets his DX of Multiple Myeloma. Fine time to get it, even though neither of us are Christian or celebrate Christmas.
  
• December 28, 2006: Richie is discharged (basically kicked out) of Mission Community Hospital. There is no arrangement for continuity of care -- he's told to go to the ER at Olive View/UCLA County Hospital. After waiting there all afternoon we are told that he can be treated outpatient for his MM.
  
• January 2007: During the early part of the month, we are stymied by a lack of access to care, and Richie's deteriorating condition. We petition to get help at City of Hope. After Richie's left shoulder balloons to twice normal size, with attending pain, he is given an intake appointment. Dr. Stephen Forman, Chair of Hematology, becomes his coordinating oncologist/hematologist. Richie's "numbers" are not great: lots of calcium in the blood, not a lot of hemoglobin in the blood, and lots of MM markers in the bloodstream.
  
• Late January-May 2007: Richie is first brought in for inpatient treatment at Helford Clinical Research Hospital at City of Hope, then outpatient treatment through Brawerman Outpatient Clinic, also at City of Hope. Dr. Forman, in consultation with Dr. Krishnan, chooses Velcade with Doxil and Dexamethasone as first-line treatment. It was a gutsy (and off-label) treatment regimen, and it was extremely effective in his case. All MM markers took off downhill at a remarkable rate of speed. There were side effects, some really nasty, others just annoying. However, quality of life was never diminished enough to discontinue the regimen. Dr. Brian Durie, the medical director of IMF, gives an informal consultation backstage at the FOR Benefit, and basically agrees with everything that has been done so far.
  
• June 2007: Bone Marrow Biopsy done at the beginning of the month, no mutant cells found in the marrow. MM markers down almost, but not quite, to zero. Now that the disease is held at bay, an unrelated but troublesome medical issue could be addressed. And plans began to be drawn up for the next step in Richie's treatment: the autologous (cells taken from self and given back to self) stem cell transplant.
  
• July-August 2007: Preparations for SCT. In two sessions, three times the bare minimum and twice Dr. Forman's comfort level of stem cells are harvested from Richie's bloodstream. As of 8/31/2007, it's full speed ahead. Check-in at Helford for the transplant is scheduled for 9/7/2007.
  

Anyway, hopefully this record will help someone else, and help those who care about Richie keep up with what's going on.