Thursday, May 07, 2009


The CT scan is done. Afterwards, at the appointment with Dr S the Lung Doc, he said there are shadows in my lungs. They're new: they weren't there in 2007, when I had the last CT lung scan done.

They're new, and they aren't good. It could actually be TB after all. Dr. S also brought up Pneumocystis, the rare fungal pneumonia that AIDS patients sometimes get. He may have seen something that indicated it; he questioned me about my immunity. I have been getting odd little skin fungal infections like other immunocompromised people do, so it wouldn't be a surprise.

A bronchoscopy is now on for Monday. The patient gets sedated, then the doc sticks a scope down the lungs, looks around in there, and takes a biopsy.

Here's our schedule for the next week or so:

Tomorrow - Friday - we'll see Dr C the ID doc. Bring her up to date on Dr S and the lung blood, and on the killer cold in general. Dr S also needs some bloodwork. Maybe I can get the blood drawn at Dr C's, a far nicer place than the Quest lab. If not, then after Dr. C, time to go see the Bloodsuckers of Quest.

Monday: the bronchoscopy. That's an all-day affair.

Tuesday: our first meeting with our (prospective) new foreclosure lawyer. Yep, Chase is still trying to steal my house.

Thursday: Dr S the Lung Doc goes over the bronchoscopy results with me. Maybe he'll figure out what's going on in there. I hope so, and hope it's treatable.

Friday: the bone marrow biopsy. The last *rule-out* test before trying for IgG shots. That is, until BCBS throws new obstacles in our path, changing the rules in the middle of the game. They will surely not want to pay for IgG boosters.

Wednesday, then, is our only weekday *time off* for quite a while. This weekend will be spent on lots and lots of paperwork-gathering for the foreclosure lawyer. That's working at home, but work nonetheless.

So you can see how it gets hard to do that *bed rest* thing, for either one of us.

But we're making sure to have fun too. Walter has been selling things on ebay - computer stuff he's gathered and repaired, or swapped with other computer folks. He's just started, and we're talking about very small amounts of money, but every little bit helps hugely right now.

Perhaps it'll lead to selling off some odds and ends we'd intended to put in a yard sale, too. Much easier on us, physically, to sell stuff on ebay, right?

And Walter seems a bit surprised at how much fun it is for him. He keeps clicking back to see if there are bids over $.99 yet, or how many *watchers* - lurkers - he's got.

And...and...we're cooking. Together, I mean. In the kitchen!

hee hee! I sit around, feet elevated, teaching and directing. He does all the actual work, gives me all the credit for what comes out well, and blames himself for everything else. It may take a while to beat that bad attitude out of him.

In all the time I've known him, Walter's just hated the kitchen. But last night we made our first actual *meal* together: risotto, and a stir-fry of pork and onions. It was really good.

And fun. Really, truly, fun.

Oh, yes. Life could certainly be worse.


John P. McCann said...

Thinking about you.

Sending some prayers your way.

Best to Walter.

Joy is in Houston, drenched in humidity.

k said...

Thank you, John. I've been wondering how you two are. I see you're sporting a dandy new avatar. [things that make you go *hmmm!*]

LUCKY Joy! Oh, lovely, lovely humidity!


Of course, ours is probably better. But those Texans always think everything's bigger out there.

Pretty Lady said...

My goodness! Did you get that voice recognition software, after all? How in the world did you type so many posts so fast???

Continuing to think about you all the time. I am selfishly glad that you continue to choose life; please continue to do whatever seems best to you. I know from personal experience that God laughs at our plans.

You know, it might not be a bad idea to stress your systemic, vitriolic MRSA to the foreclosure lawyer, for him to pass along to Chase. I know that I, for one, would not necessarily want to be responsible for selling a house with that history; neither would I want to figure in the news as the entity that evicted somebody with your health problems.

I miss you so much! Your posts seem incredibly coherent to me, whatever you might think about their rambling-ness.

Did you get the link to our baby pictures?

Jan said...

K..still remembering you and Walter in prayer.

I think PL has a good idea about pointing out the MRSA problem..I'd do that if I were you.

People can be so cruel, sometimes.

I hope things work out well for you, sooner, or later.

k said...

Pretty Lady, it took me almost as long to write those posts as it took you to write about birthing Miss Olivia Grace! And what a wonderful post, and extraordinary birth, and beautiful name for this wondrous new child. Oh, there is SO much I want to ask and tell you about, both!

The VR software project stands here: The ball's in my court. Apparently these programs actually learn the user's voice, and translate it better over time. Too cool! But my voice is strange at best, and it changes constantly, so it's especially important to find the right program.

Now I need to work with this free sample program Walter found that may be a good candidate. If it is, we need to buy the full program. And the budget priority list is particularly bad just now - the VR program is pretty far down, even as critical as it is.

The procedures I use to get the hands to type whatever they can are complicated enough that they'll get a post of their own. One thing hampering me badly lately is that I'm out of the hand patches, Lidoderm. There they sit at CVS pharmacy, asking me for $57 to get them out of hock.

Which, like everyone else I know, we don't have. Recently, a fellow blogger was able to donate enough for us to get some other medical stuff paid, and have funds left for bacon and bananas for breakfast. Treats! That was so nice.

But those costs come first, right? So until the end of the month, I have no patches. Using the hands unpatched is far more painful, of course. Worse, it adds to the tendon damage, because the patches provide both padding and support.

You and all the others who have been using your time and energy and emotional strength to be supportive played no small part in my ability to pull through. This goes for ALL of you: everyone who commented, and those who didn't actually write it down, but were - I know - adding to the pool of support.

If there's anything I can possibly give back, through keeping this blog fresh or any other way, I am nothing but grateful for the opportunity to try. There's no way I can make the smallest dent in the debt I owe to life itself, and to those who have given me the strength to hold on. So I won't try to make it even: just try, instead, to hold my own end up as best I can, when I can.

Was it John Lennon who first said *life is what happens when you're making other plans?* That Muslim habit of adding *God willing* after every desire they express seems perfectly sensible to me. I keep it in mind too, especially in my attempts to hold my own end up...

I'm with you and Jan on the MRSA bit for the foreclosure lawyer- and judge, where it matters most. That's one of those topics that should get an *Update and LP* post, because I've already started to put it into play. What fun it was!

I miss you too, TOO much! We were in the hospital at the same time, and in my half-delirious state, I was somehow convinced that this would get your baby to finally make her move...

and I haven't seen any of the baby pix yet, NONE, so THANK YOU!!! I'm just beginning to totter about from blog to blog, catching up again.

Jan. So very often over the last couple of months I thought of you, and of your mother, your son, and your husband. What parallels! I had no doubt you were praying for us, and it went into that pool of energy I could feel sustaining me. I thank you for that. And thank your family too, whether they would feel they *participated* or not.

When I tired of battling Holy Cross or the nursing home over getting me my meds, I remembered what happened to your mother with her patches, for instance. That's exactly what gave me the strength to keep on fighting for the medications that I so desperately needed, and that they were so horribly unconcerned about providing.

I think I would have liked your mother a great deal, and hope she might have liked me too. There's this feeling that I would have learned a lot from her, of real and timeless value.