Western toad painting by Carl Dennis Buell

Birding and other pleasures and aggravations, in Berkeley and beyond, by Ron Sullivan.

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August 15, 2010

Ask Me About My Monoclonal Antibodies

I’m almost afraid to say it out loud (though I’ve been interjecting it into conversations when I myself least expect it) for fear of jinx.

But.

Apparently Blue Cross will pay enough of the cost of Xolair to make it within my means. I’ll theoretically have a co-pay of about $65 every three months; they’ll send the stuff to my doc’s office. There’s also the bill for the allergist’s services (i.e., sticking big loads of fluid into both deltoids every two weeks) but that’s doable too, which is not to say “cheap.” I’m getting weekly “regular allergy shots” too, four subcutaneous pokes of some of my various allergens. It mounts up. It’s worth it.

The other day I began to suspect that it’s working, though I might be being uncharacteristically optimistic. I’d spent last weekend romping with—OK, skritching and fluffing and being licked on by—assorted dogs at Len and Ingrid’s wedding picnic; then getting into the incredibly dusty stuff in the storage unit. All this, and I’d run out of both the steroid inhalers I take prophylactically twice a day. And I was nevertheless still breathing, and without great blasts of albuterol.

I’ve reloaded the steroid inhalers of course, but I’m hoping to be able to reduce those doses eventually. Between that and the perfectly miraculous work that the perfectly marvelous Jim Romano is doing on various parts of my body, I’m having flashes of hope that little things like, oh, knees and back will get back to working. Maybe even less painfully. Maybe I’ll be able to walk uphill again. Maybe it won’t even hurt.


After I’d talked to the nice lady from Whoever-Medco, which will supply the Xolair, it took the rest of the day to sink in that there was hope. I found myself in tears that night, talking it over with Joe, realizing just how terminal and depressed I’d been feeling for the past couple of years only now that I was feeling otherwise. Maybe it’s overdoing it, but I feel I’ve been handed my life back.

Responses

1 | By: jael on August 15, 2010 at 12:36 PM

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wonderful news, Ron Sullivan!  Wonderful, wonderful news.  (hug)

2 | By: kathy a on August 16, 2010 at 02:37 PM

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woot!  that is really great news, ron!

3 | By: Ron Sullivan on August 16, 2010 at 03:59 PM

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Thanks! Yes!

Furthermore, I just got a letter from BC/BS confirming what the Medco rep told me.

It’s very strange to find myself feeling grateful to Blue Cross and Genentech. I’m already all hats-off and deep-bows to the scientists who came up with the stuff and such hardworking people who actually try to get benefits to people. What’s new and odd is feeling this way more toward the corporate behemoths. It’s like getting a free ride on the wake of a tanker.

4 | By: kathy a on August 17, 2010 at 11:49 AM

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well, that’s a good place to be.  they are supposed to be helping you with health problems.  when they don’t—or it’s not enough—that’s where those helpless feeling comes in.

5 | By: Sally Mack on August 17, 2010 at 11:54 AM

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So glad you’re finally getting some relief, it’s been a long haul.  When you’re ready for an outing, let me know, I’ll supply the Vietnamese rolls!

6 | By: Ron Sullivan on August 18, 2010 at 09:25 PM

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I think you’ve just accelerated the schedule Sally.

7 | By: Narya on August 19, 2010 at 05:33 PM

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This is so very wonderful. Chronic anything drains the energy, but I can’t imagine chronic something that is life-threatening and/or debilitating. I’m so glad something is working.

In other news, I haven’t forgotten the christmas stocking I promised to you. I do not appear to have it, but I will retrieve it when I visit my parents (either over labor day or at thanksgiving or both).

8 | By: kathy a on August 22, 2010 at 02:26 PM

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i also owe you a stocking, and i forgot to bring it yesterday!  which proves i’m an idiot, since i’ve literally had it on a shelf so i would remember it, since january…

9 | By: kathy a on August 22, 2010 at 02:33 PM

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p.s.—someone will need to fill me in on the amish conversation.  my local source is hibernating.

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