morrowlife

Here’s a room in the same building as the world’s longest model railroad. Why organ consoles? Why not? I guess the guy likes model trains and organs. Great Art courtesy of the exclusive iPhone-cam, taken at Northlandz in Flemington, New Jersey, and part of my famous Electronics and Machinery series.

A close look at that organ console on the right will reveal that one’s made of a bunch of electronic keyboards. Sadly, we never heard it or any of the others being played. Maybe next time. We were so exhausted after walking through the model railroad for hours that I don’t think we could have listened to any music at that point.

Today was a very good day for Shannon. She reports that she woke up at 3:00 or 4:00 this morning and just felt . . . normal. It was amazing! No real pain, she could move her muscles the way she wanted to, her head was clear, she was just fine. She was as excited as I’ve seen her in a long time.

Sadly, it didn’t quite last all day, which left her kind of discouraged by this evening. I understand, but I still think there was significant progress. She looks noticeably better, she can move better, she has more stamina, she’s doing just fine on much less oxygen, she’s eating better, she’s just better in all ways. I don’t think she really saw that tonight, but I did.

We moved today. Apparently, they had somebody sicker than Shannon who needed closer monitoring, and he/she could only get that in Shannon’s room. So we’re now on the fifth floor – room 5221. Drop in and see us. This room is the “negative pressure” room, which means it’s a bit smaller than other rooms in order to leave space for an anteroom. I think they use it to isolate extremely sick people. That’s not the case with us, though, so we’re just living in a slightly smaller room for a while. Not a real problem, though.

Shannon had her stomach x-rayed from several angles today. They’re trying to figure out why it’s so distended. So far, they haven’t discovered anything seriously wrong, which is good. She just needs to get as much exercise as she can and let time pass by. That will hopefully fix her up. We were a bit worried that maybe there was a blockage (there isn’t) or maybe fluid had accumulated outside her guts like it did around her lungs and heart (it did, but it doesn’t appear to be very bad at this time). So we just press on and have confidence that it will resolve itself.

Her white cell count was down to 5.7 today. That’s down from 6.7 (or so) yesterday and 7.7 the day before. And correspondingly slightly higher numbers the days before that. That’s good progress and things are happening just as we expected, leukemia-wise. No cure yet, but moving steadily towards getting back into remission.

The pneumonia continues to improve. A few nurses have told us over the past few days that they couldn’t hear any rattling in her lungs. I told the Infectious Disease doctor about that today and he had a listen for himself. He can still hear a bit of rattling, so we’re not done. But her lungs are clearer than ever. She was on 6 liters/minute of oxygen yesterday. They turned it down to 4 this morning, 3 this afternoon, and 2 this evening, and her blood oxygen level is comfortably above 92%, which is their desired minimum. She’s been much higher than that. So I’m feeling good about that aspect of her recovery.

While I’m sure we’ll be here for several more days, I’m beginning to think maybe we’re halfway done with our current stay. That’s not an informed opinion – just an opinion. And maybe I’m right.

I wrote Shannon a bit of a mushy email this evening. Normally, I wouldn’t share this kind of thing, but today I want my Loyal Readers to know how I feel about my wife. It ought to be edited for some awkward prose, but I’m copying it exactly as I wrote it. I hope my Loyal Readers will forgive my self-indulgence. Here it is:

Dear Shannon,

Today was a good day. I’m feeling so, so encouraged. Please stay courageous and strong. I feel like the right things are happening, albeit more slowly than we would like.

A familiar and wonderful thing happened on my way home. “Laughter in the Rain” came on and, as has happened so many times before, I was instantly 17 years old again and experiencing the giddy happiness of meeting and falling in love with the girl who would soon become the very center of my life. It is such a wonderful feeling, I just can’t help falling in love all over again. I played the song over and over and felt warm, young, happy, and in love.

Then something new happened. Suddenly, 38 years passed and it was 2013 and we were living in the Village. As we took our daily walks to the clinic, through the rose garden, or just around the campus, I fell in love again, over and over, every single day as we walked hand in hand. And it keeps happening.

I’m so happy we’re still together after all these years. You’re still that cute, happy, loving, mysterious girl I fell in love with all those years ago. You’re still the one I want to hold hands and walk with for the rest of my life. I love you more than I can possibly express.

Love,

Michael

Shannon’s college roommate Debbie and her husband came to see us on Sunday! It was great seeing her again and meeting her husband. She has commented here on the blog a couple of times and was planning to come see us, so it wasn’t a total surprise, but it was still a treat. Thanks, Debbie!

Not much work got done. I don’t know why. Shannon and I are both planning to get our noses to the grindstone tomorrow. I have several things that need some lead time before the conference, so I’m really running up against a pretty hard deadline soon. We’ll make it, though.

Mark appears to be doing well without us at home. I hope he doesn’t get to liking it too much. We’ll be back.

And that’s it for tonight. I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: basketball-player deer!

See you tomorrow.

Here are my new monitors. I got them for the conference at which I’m exhibiting in February. One of them is currently sitting on my desk, though, being burned in. Maybe I should burn in the other one too. I’ll have to think about that. Great Art courtesy of the exclusive iPad-cam, taken in my living room the other day, and part of my famous Electronics series.

Okay, even I will admit that’s not exactly Great Art. But it comes as close as I can today. And all of my Loyal Readers should definitely buy some of those [amazon text=excellent monitors&asin=B008A3KFB8]. And they should of course click on my link to buy them.

Well. It’s been quite a weekend. Shannon was scheduled for the long-awaited bronchoscopy on Saturday morning so we could finally find out what’s going on inside her lungs. Instead, they told her she has pleurisy and they didn’t need to find out what was inside her lungs. So they didn’t do it. Again. It’s now rescheduled for tomorrow morning. Sigh.

She’s had a pretty rough time of things the past couple of days. Sunday morning started pretty much as usual. They unhooked her from her IV pump long enough for her to take a shower and the day started. I came over to the hospital in the morning, worked for an hour or two, and then left to go back to the hotel to do Shannon’s and my laundry. After spending a couple of fairly relaxing hours sitting outside and reading while the laundry washed and dried itself, I folded everything, put my stuff back in my room, and headed back to the hospital with Shannon’s stuff.

I was pretty much shocked by what I found there. She had suddenly become extremely weak, to the point that she could barely get out of bed or even speak in a complete sentence. She has remained pretty much that way since. I wrote an email to her doctor asking for his help and he came over today to see what was going on. He took a look at her latest blood work and discovered her electrolyte levels had fallen dangerously low due to fluid loss brought on my the diuretics they’ve been giving her for several days to try to remove the fluid from her lungs and chest cavity. He started her on fairly high doses of potassium and magnesium and said we should see rapid improvement.

Sadly, she started improving, but fairly quickly stopped and even got a bit worse, I believe. When I left the hospital a little after 9:00 this evening, she once again couldn’t stand up or even sit up in bed. I don’t think she’s dying, but I’m very worried about her. We need to get this figured out and fast.

On the positive side, her white cell count is falling, as it should as a result of the round of chemo she just finished. The blasts are above 70% now, if I heard correctly, so it’s pretty clear she still needs frequent chemo to remain in remission. While the doctor was here, I talked with him briefly about how this would be a very convenient time for us to get another stem cell transplant. He’s promised to look into it after she’s back on her feet and cured from the pneumonia/pleurisy.

On that front, the infectious disease doctor was over this afternoon. He mentioned a lot of things that could be going on, but he thinks the most likely reason the antibiotics haven’t completely cured her is that there might be some virus (she originally had influenza A, as my Loyal Readers will recall) or fungus in there too. So he’s adding a bunch of antivirus and antifungal medications and pushing hard for the bronchoscopy tomorrow so we’ll know for sure. There are all kinds of other obscure things that could also explain the problem, which is why he thinks the test is so important. It really needs to happen.

As far as I’m concerned, pleurisy sounds like a 19th century disease. Maybe they should check her for consumption and ague while they’re at it.

And that’s about it for today. I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: beer-stealing pig! And the best part is that there’s definitely an immediate opening.

See you tomorrow.

Here’s Mark with a Zoltar machine. That’s Mark there on the right, with Zoltar on the left. Of course, having his name printed directly over his head is something of a giveaway. Maybe Mark should consider getting a sign like that one. Great Art courtesy of the exclusive iPhone-cam, taken in Boulder city mere moments before the Atomic Missile photo featured on Tuesday, and part of my famous Electronics, Machinery, and Statue series.

I nearly called Mark LRN2 in that first paragraph there. That’s a difficult habit to get out of. Once you get a shtick going, it’s hard to change direction.

By the way, you can have a Zoltar machine too! Or maybe go [amazon text=a bit cheaper&asin=B000NOOZ1S].

Lots of news around here. Yesterday afternoon, I got thoroughly disgusted when our lung doctor refused to perform a test that our oncologist told us Shannon needed. It’s the bronchoscopy they’ve schedule two times before and called off both times at the last moment. The guy said he won’t do it because her platelets are too low. Which is ludicrous because her body is incapable of creating platelets, as I mentioned. She needs that test because, while she’s doing much better than before, she’s no longer really improving and she can’t get free of the oxygen. She also can’t get free of the hospital.

So I got unhappy and decided it was time to go to the City of Hope. Shannon agreed and I started making the arrangements. Our Nevada oncologist agrees that it’s a good time to transfer her. Our California oncologist agrees and has been wanting us to transfer her since he found out. And our internal disease specialist’s partner visited us this afternoon and told us he absolutely agrees that we need to go. Without wanting to say anything negative about the wonderful people at the hospital here, they just don’t have enough experience with stem cell transplant patients and their special needs. At this point, we need to get with the experts. So we’re going.

Shannon called me early this morning and let me know they told her she was being transferred today. She I scrambled around and drained the jacuzzi, changed the sheets on our bed, finished folding Shannon’s laundry and got some extra clothes out for her, got gas in the Taurus, and packed a suitcase for myself to last for anywhere from three days to five months. I loaded it all in the car, along with Shannon’s pills and a dirty clothes basket, and headed to the hospital to await Shannon’s air ambulance departure. And . . . she didn’t go. There’s not a bed available at the City of Hope yet. It’ll happen within a few days, of course. But why did I believe them when they told me we were leaving? Sorry.

I should have done what we did last time this happened. That time, I kept living a normal life until they told her it was time to go. Then I went home, got ready as described above, and drove to Los Angeles. In my defense, I thought they had told her it was time to go.

Anyway, we’re going soon.

No work was accomplished today in all the confusion. Spoke with my mother and both of my brothers today. Everybody seems to be doing fine and they’re all excited for us to keep moving forward. Chris was going to come visit us for the weekend, so that’s canceled, unfortunately. Maybe another time soon.

And there’s not much else on my mind right now, so I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: rental chicken!

See you tomorrow.

Here’s The Button. The Button that launched the first person into space. Yuri Gagarin, that is. That’s a younger version of me about to push The Button. Great Art courtesy of some old camera, taken at the Baikonur museum on June 2, 2001 during the Astra 2C launch campaign, and part of my famous Machinery and Electronics series.

Yes, I now have a famous Electronics series, after the great outcry of a few days ago. Well, at least LRN16 thought I ought to do it. By the standards of this blog, that counts as an outcry.

Pretty good weekend. LRN4 has had a pretty bad-looking rash for a few days and she’s been running a fever. That makes us worry a bit about an infection, doesn’t it, Loyal Readers? Well, we discussed it with our doctor today and . . . she has an infection! Not a good thing, but the doc doesn’t seem all that concerned about it, so we’re deciding not to worry too much about it either. She got a whole lot of new antibiotics and they sent us on our way. We’re hopeful. But infections are not a good thing for her. Not at all. Could land us back in the hospital if she doesn’t start getting better real quick.

Today’s good news: LRN4’s white cell count is still down at 0.2 and her red cells and platelets are fine. So we’re doing okay.

Nothing else new. I’ve been spending my few working hours on the app for my brother and the medical app. Making a bit of progress. Not fast enough, though. We’ll get there. Did I mention I’ve paid the exorbitant price for a booth at the big conference in February? Well, I did. Now I need to get the software done, finish the documentation, develop promotional materials, get everything needed for a professional-appearing booth, get airline, car and hotel reservations, and do all the stuff I haven’t thought of yet. Sounds easy.

Great news! Another season of [amazon text=White Collar&asin=B00B58948U] has found its way onto Netflix. We’ve been watching it tonight. Well, LRN4 saw the first episode, anyway. Now she’s napping while I watch a few more. Enjoying it. Recommended.

And I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: itchy power-killing cow!

See you tomorow.