morrowlife

Here are Shannon, Andy, and Mark in the dining area (mess hall?) of a WWII-era submarine in Baltimore. Great Art courtesy of my good old Minolta camera, taken during our holiday trip to Baltimore that year, and part of my famous Shannon, Machinery, and Vacation series.

My mom went home today. We had a very nice visit and she really helped me over some very large humps. More humps to go, of course, but she was here during a very difficult time. Thanks, Mom.

Mark and I had a quiet day. We stayed inside and pretty much relaxed. Had stuff from the freezer for dinner – not much excitement there, but it was fine.

I had a fairly long conversation with my PhotoDoc partner John this evening. His speech at the AAFS conference was today, and the response was excellent! He had several people come up to him after the speech and ask him how to get a copy of our software. We have it available for download as a demo, but I still haven’t set up the payment system for it. Need to get that accomplished this weekend.

My brothers and sisters got together and sent us a bunch of frozen meals! They arrived today. It all looks great! Thanks so much, brothers and sisters! Mark and I will get a lot of mileage out of that excellent stuff.

And now we come to what might be my best idea of the day or possibly my worst idea of the day. I was going through my emails today (including all the numerous emails directed to Shannon – I’m working on getting her various subscriptions undone) and I saw one from Carnival Cruise Lines. They’ve suffered a bit of bad PR in recent years, and the deals seem pretty good right now. I signed up for one leaving at the beginning of March and spending a week on the Mexican Riviera. Well, it spends a few days at sea, but there are two days in Cabo San Lucas and one day in Puerto Vallarta. The price was quite reasonable, and they’re not even charging me extra for occupying a cabin by myself.

I’m still trying to decide whether this is a good idea or not. I’ve been on a bunch of memorable cruises with Shannon, including one to the Mexican Riviera four years ago this month, and I’m very worried  that being on a ship by myself and going places Shannon and I visited before will be too depressing for words. Even if that doesn’t happen, I’m worried being on a cruise by myself will be boring. Could happen. Especially if I can’t convince myself to get out of the cabin, be with people, and even – horrors! – make a friend or two.

Things in favor of going: I’ve always loved cruising, it may be really good for me to get away and think and be alone, I haven’t been on a real vacation since before Shannon got sick, and I really want to get my new life started.

Should I wait a bit longer? Maybe. I don’t know. Doesn’t matter anymore. I’ve already paid for the trip. I’m going. I asked both my sisters and my daughter if they thought it was a good idea, and the vote was unanimous in the affirmative. Plus, it’s already paid for. Did I mention that? And the price was great. I’ll try to remember to take some pictures.

Note to house burglars – Mark will still be home. So you can just go ahead and burgle somebody else’s house.

Emotions rose to the surface only once today. I don’t call that either good or bad. It’s just what happened today. All I know is I miss Shannon.

And I’ll let that be all for today. I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: yawning chimp!

See you on Monday.

Here’s a closeup of one of the organ consoles from yesterday’s Great Art. Pretty fancy. I can’t decide whether it originally came from a movie theater or a funeral home. Any opinions, Loyal Readers? Great Art courtesy of the exclusive iPhone-cam, taken in March, 2012 at the previously-mentioned Northlandz model train and organ extravaganza in New Jersey, and part of my famous Machinery series.

This one wasn’t in the Electronics series. Somehow I doubt there are very many electronic components in there.

Pretty good day for Shannon today. Not the best, but far from the worst. Her white cell count was down by a little. Her pneumonia seems a little bit better, but we really didn’t get any data in that area today. Her electrolyte depletion seems to be pretty well recovered by now.

Now for today’s challenges. Her sodium and protein levels are low. That’s what seems to be causing the terrible swelling she’s experiencing in her legs and feet. They’ve asked her to restrict her liquid intake for a while in hopes of helping her get the levels back under control. They also had a gastrointestinal guy come check her tummy out today. He says there’s a bunch of fluid in there, which was what I was suspecting. Apparently, they’re going to drain it tomorrow, which I hope will make her digestion better, which will in turn make it easier for her to eat well.

In the area of draining unwanted fluids, they got another 600 milliliters of fluid from outside her left lung again today. The doctor says if he keeps needing to empty her chest cavity out so frequently, he’s going to have a “pigtail” put in. That’s a thin tube that stays in her back and can be drained by a nurse any old time.

We were a bit worried about what the cause could be for all the swelling and accumulation of fluids in  various places. Could it be kidney failure? The answer: no. Her blood chemistry says her kidneys are working just fine. They think it’s the low protein level. So they’ll hopefully start addressing that tomorrow.

It’s always something lately, isn’t it, Loyal Readers? Challenges. But we’re equal to them and we’re pressing on regardless.

I got some work done today! I expect to be able to place some orders for promotional materials for the upcoming show tomorrow. I think we’re going to be where we need to be when we need to be there.

And I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: rogue kangaroo!

See you tomorrow.

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’s Andy back in March 2012 with his shiny new Ford Raptor. At least he wishes it were his truck. Itu might have other ideas about that. Great Art courtesy of the exclusive iPhone-cam, taken in Canton, Michigan during our March 2012 visit there, and part of my famous Machinery and Vacation series.

Boy, has a lot of water flowed under the bridge since then.

No post yesterday. My cousin’s Internet connection was on the fritz. That’s why I’m blogging from the hospital this afternoon, just in case. They’re paying good money for Internet service and absolutely not getting their money’s worth. Betsy tells me they’re switching providers soon. Couldn’t be soon enough for me.

Shannon’s having a pretty good day today. Her strength continues to increase. It’s still not great, but it’s improving. She was able to get up this afternoon to take an actual shower for the first time in a few days. That makes her feel a whole lot better. She’s currently sitting up in the chair and watching HGTV – also a significant step. The sitting up part, not the HGTV part, that is. Although I’m guessing my Loyal Readers had already figured that out. We live for clarity.

Her white blood cell count is down to 8.8 today, which is another good number. It continues to slowly decrease, exactly as we hope and expect.

Today’s big news: they did the bronchoscopy yesterday! It went very well. She has had zero pain and no problems at all as a result. The tentative report this morning was that they didn’t find anything in there. I’m not sure what that means yet – I wasn’t here when the doctor came over to talk about it and Shannon doesn’t remember exactly what he said. But any data is good data. We’ll probably know more about it tomorrow.

Anyway. Her lungs are increasingly clear. One of the nurses was listening to them through her stethoscope this afternoon and said she didn’t hear any crackling! That’s the first we’ve heard that report in about a month. And it was music to my ears.

They also did the procedure where they suck out the fluid outside her lungs yesterday. At least they did half the procedure – the right side. They got about 600 ml of fluid. I asked how much fluid a healthy person would have there. The answer: a tablespoon or two. So she was a bit high. They’ll drain the other side tomorrow, if the schedule maintains.

So we have good news on all fronts today. Nothing negative to report at all. Yea!

Happy birthday to Katy! I’ll leave it to her to reveal her age. I just want to say she’s been a major light in my life since the day she was born and she’s grown up to be a brilliant, witty, loving, gifted, wonderful woman and a fantastic mom. I love you, Katy!

And that’s about all I have to say about this wonderful day. I’m really feeling happy and optimistic today. The future looks bright! I’ll leave my Loyal Readers with this combination exciting Morrowlife Employment Agency job opportunity and shocking food violence news: crime-fighting cucumber!

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.