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.

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.