Richie update

OK, here's an update on Richie.

Apheresis (stem cell collection) started last week, with one collection on Friday and one collection yesterday. Friday's collection got 1.2 million cells...not great, but not bad. The doctor suggested an afternoon collection the next time, giving the Neupogen time to work some more before collection because Richie would give himself the shot every day after breakfast. That was damn good advice, because the collection yesterday got 18 million (yes, I'm putting my pinky to my mouth when I type this) stem cells. All that in one swell foop. Amazing. Lots of celebrating. The target was 9 million, with 6 as a bare minimum. Now we have enough for the second in the Tandem transplant if that's going to be part of the protocol.

Richie has been scheduled to go into CoH Helford Research Hospital on 9/7/2007, with a consultation the day before. I'm going to have to take a day off from school to attend the consultation.

The tales of hard-fought success with SCTs I have been reading on the Myeloma mailing list have been comforting to me, although sometimes scary considering the kind of side effects people have had to battle. I am still of two minds about this, considering how well Richie's disease has been managed under the Velcade/Doxil/Dex protocol, and all the horrible experiences some of you have had. While I haven't heard of people dying of the procedure (I'm sure there are a few in the literature) it sounds like some of you wished you were dead through the process.

On Richie's side are two things: his relative youth and his baseline health outside of the MM. He's 54 years old, and likely will still be in Helford for his 55th birthday on the 21st. It's sort of like saying "Other than that nasty business, Mrs. Lincoln, how was the play?" but he is in excellent health otherwise. Cardio's great, Pulmonary's great, no other diseases, and right now he's getting back into walking and has been working with a physical therapist. He's been in a pain-free period where he hasn't had to use opiates.

I'm worried. I'm not looking forward to the separation. He's looking forward to it, in spite of all the potential for danger, misery and possibly even death. And once Richie Hass has decided he's going to do something, he won't be dissuaded. He's a stubborn cuss.

I don't want to lose him. However, on the Buddhist tip, one must remember that all things are impermanent. The anxiety is killing me. But I need to let him do this, and prepare myself to let go of him if something goes wrong. "I want a chance to get healthy" is his refrain. He's willing to take this very big calculated risk. I suppose I need to be supportive and just let him do it. But it doesn't mean it doesn't hurt.

School Daze again...

Yes, it's once again time to deal with yet another chapter of the Woodbury Follies. Being in a small school is odd sometimes...word has gotten around about Richie's hospitalization, and now word is going to start getting around about his Multiple Myeloma. People are being uber-supportive, thankfully.

Due to all the uncertainties surrounding the past two weeks, I had to use a book voucher to buy my books, at the clip joint we know and hate as the Woodbury Bookstore. I'm now down almost $350 and I still have to buy some more books, dammit. At least most of them came in used versions. My monetary situation here is squared away and we'll at least get some financial aid overage to keep us going.

I have to keep going with this. Having my bachelor's will be good but unfortunately a BA in Psych is not so helpful in the job market. Once I get my Masters' things will be moving ahead somewhat. Since it has become clear that Richie's time on this planet is limited, and that he will not be able to do as much with that time due to the illness, it is also very clear that if I have a professional degree I will have a better time of it than if I don't have one.

The weight of this past few weeks is on me like a ton of bricks. It's painful. But I have to bear the pain and get through it somehow.

It's Multiple Myeloma.

The diagnosis is in. Richie's got Multiple Myeloma, which is a cancer of the bone marrow. It sounds super-scary at first but it actually is a fairly slow-moving disease that can be managed with both a current generation of drugs and a new generation that is being rolled out. It's not great news but it isn't a death sentence either.

My family is rallying around us, and so is what's left of Richie's family. We should be OK.

Thanks to all who have been thinking good thoughts, meditating, praying, and whatever else. It is appreciated. Please keep it going.

And the doctors, nurses, orderlies, respiratory therapists, counselors, case managers and so forth at Mission Community Hospital have been wonderful. Small hospital, big heart, good people.

I'll keep everyone posted about updates, unless TMI is involved.

I feel (not so) good.

It is going to be a fucking drag to break the news to Richie that James Brown is dead.

I can't keep this news from him. Regardless of what he's feeling like right now. I have to. It's my duty as his eyes and ears. He's sworn off TV and the Radio as part of his healing strategy, but I get him the paper every day. And it's going to be in there, of course.

As far as Richie's condition, things are actually better, believe it or not. There is now a theory of why Richie's experiencing what he's experiencing, and it is a curable, and also thankfully not fatal condition. It's called Hyperparathyroidism and basically results from the Parathyroid glands going out of control and leeching calcium from the bones and putting it into the bloodstream.

Hopefully if that is the explanation things will resolve well. If not...as Borat would say, "not so much."

Update: the other possibility is Multiple Myeloma. As cancers go, it's not horrible, but it's not great. You can die of it, but you can also linger for years and years and maybe even do OK. My Great Aunt Charlotte had it, but it wasn't what killed her. What usually kills people with Multiple Myeloma is infections (it suppresses the immune system) and the consequences of thinning brittle bones.

We find out about the bone marrow biopsy tomorrow. We hope.

The official grades...and bad news...

Here's the official grades:

Meanwhile, Richie is going through a major health crisis. He's in the hospital now. The doctors are either not sure yet what is going on with him or they are keeping their cards very close to their vests. The uncertainty is driving both of us crazy. Even though Richie is strongly urging me to continue with my studies, he's going to need lots of help and so will I if this turns out to be something other than a temporary, immediately curable problem.

Needless to say, this is a really crummy holiday season. Since the death of my father on Christmas Eve Day in 1975 I've been in the "holiday blues" category. No, this isn't my freaking holiday, but the cultural, non-religious aspects of the holidays are still a big part of American life so I've been at least ambivalent about them for most of my life.

But this tops it all. Richie and I have had, rarity of rarities, a really good marriage for almost 20 years. I used to think I'd kill myself if I lost him but I think I have enough of a sense of mission in my life to want to carry on without him, no matter how difficult life will be. I want him to survive this, most importantly. However, if surviving means heroic measures, horribly poisonous chemo, punishing radiation treatments or other "cure is worse than the disease" treatments, he has said he will refuse them. I have to support him on this regardless of how I feel. And to be honest, after seeing what my mom went through, I would likely make the same decision.

I am not a happy camper. But I have to be strong now, for both our sakes.