Day 43: Out of the Hospital and Home

Well, it's been 10 days since I blogged. The recovery apparently touches not just my energy level but my commitment level as well. I have to believe that I've had enough energy and time to have updated this blog in the last 10 days, but it's not just energy that's affected. My "want-tos" have been affected as well.

Fortunately, my wife's been making notes.

The last time I blogged was Sunday, Feb. 19. That day they gave me a stronger steroid to treat the Graft-vs.-Host disease of the gut. I ate my first bowl of soup that day. It's possible that I literally hadn't eaten for 2 weeks before that. (If my blog says otherwise, then chalk that up to my bad memory. There was, somewhere in there, a 2-week period where I ate nothing or almost nothing. I lost 30-35 pounds in my six weeks in the hospital.)

My white blood cell counts jumped to 1.8 on the 19th. That's a great count for a guy waiting for his WBC counts to return. My neutrophils, the cells that fight bacteria, were 910. The goal, apparently, when you're getting a cord blood transplant is 2500 for the neutrophils, which is actually a low but normal count for them. If I stay over 2,500 for two days in a row, they stop giving me Neupogen, a drug that pushes the bone marrow to produce cells. If it drops below 2,500, they go to giving me Neupogen again.

I need those cells to fight disease. At this point, it's not enough to have a few white blood cells and enough neutrophils (1,000) to avoid being "neutropenic." I have to take immunosuppressive drugs, so my immune system doesn't work as well even when it has the cells.

So, here's what's happened since Feb. 19, based on my wonderful caregiver (my wife) and her notes. (Just for the record, I've always known I married the only and best woman I could have. After seven months of leukemia treatments, that is driven home. I don't know who else could have tolerated this last seven months so well, all the while telling ME that I'm doing well and working hard. I had no choice. She chose to work hard every day after day for months, some of them pretty overwhelming.)

• Monday, Feb. 20: WBC jumped to 2.1 with 1890 neutrophils. However, I passed out on the floor at 4:30 a.m. on my way to the bathroom (or afterward, washing my hands, I don't know), scaring the daylights out of wife. I managed to avoid hitting my head, and when I tipped the IV pole over, it hit the wall and stayed upright. Lorie had to yell at me repeatedly to get me to wake up and answer her, then she pulled the patient alarm on the wall so we were flooded with nurses and the night shift doctor. I spent the rest of the day in bed.
• Tuesday, Feb. 21: WBC jumped to 2.7, and my neutrophils went over 2,000. They checked my blood pressure laying, sitting, and standing, and standing it was about 70/40. I was issued a yellow arm band to indicate a person in danger of falling. Nonetheless, I walked the halls some in a walker with either a nurse or my wife as an attendant.
• Wednesday, Feb. 22: My WBC jumped to 4.1!!! Neutrophils were about 3700. I had done a bunch of tests over those couple days, but apparently things were well enough that they started telling me I could go home the next day. My four youngest children arrived to stay with us at home. I walked the halls that day without help, even though I still had the yellow arm band.
• Thursday, Feb. 23: They let me go home! Today was also my oldest son's 22nd birthday! My WBC and neutrophils were the same, but they didn't stop the Neupogen anyway. Oh, well.
• Friday, Feb. 24: First day in clinic after going home. We thought we would have to be coming in every day, but as I write this on the 29th, we are already only going to clinic M-W-F. They gave me all sorts of IV supplements, though I primarily remember the magnesium and potassium, plus the neupogen. WBC and neutrophils were consistent. They were giving me platelets, the blood cells that allow your blood to clot, almost every day at the end of the hospital stay and on this day as well.

Getting Used to the Clinic

We were shocked when on Saturday they offered us a day off on Sunday. My parents, my mother-in-law, and my oldest son were coming that day, and we had friends in town visiting already. We were amazed, and we thought it was great.

My friend Nathanael drove me to the clinic Saturday morning, giving my wife a well deserved day off to go shopping with a number of other friends from home (Rose Creek Village in Selmer, nearly 3 hours from here). I don't think I told you about it, but my son Noah not only became engaged while I was in the hospital, but he set a date of April 29!!! The women were wedding shopping here in Nashville.

So I had a wonderful time getting caught up on news from home, while Nathanael got to play the role of caregiver for a day.

So we left on Saturday, not expecting to come back until Monday.

Nope.

It didn't take long before I was called by the nurse-practitioner. They had to take one blood level from me, to measure the amount of one of the immunosuppressants in my blood. Could I come in for just long to enough to give some blood.

Sure, no problem.

The next call was a couple hours later. I had to get an infusion of Micofungen, an antifungal medication. Was I set up to give an IV like that at home?

No, there'd been no time for that.

"Okay, well, we'll just hook you up quickly to the Micofungen, then you can go straight home. I'm so sorry it's not a day off, but we can keep it short."

No problem, I told her.

So Sunday morning, I came in, and I noticed they took four tubes of blood. Not exactly what you need for one quick check on an immunosuppressant.

After an hour or hour and a half of hanging around, doing nothing, apparently waiting for the blood counts back, I went and asked the nurse in charge, "Am I not supposed to get one quick blood check then the Micofungen immediately?"

At first they promised to get the Micofungen right there. In fact, they even did that. The problem is that right afterward ...

"Um, we have a little problem. They did all your blood tests this morning, rather than just the one. Your magnesium is really low. In fact, I really am supposed to give you 3 hours worth of magnesium today, but if you need to leave, we can give you 1 hour today, and you'll have to plan on a really long day tomorrow.

We opted for the one hour.

A couple of the nurses joked to me about the fake day off, and they apologized.

I laughed and joked with them, but I was never mad. These people are the sweetest, most hard-working people you'd ever want to know. Everything they've done has been to cure leukemia, then keep me alive through the treatment. They were saving my life. It's one thing to laugh at jokes with the nurses who work there. It's completely another to really complain.

I got home at for a shortened day with my family and friends, perhaps at 1:30 pm or so.

It's worth it to be alive.

Speaking of being alive and in the fun spirit this blog is supposed to have, the video that follows is my youngest daughter, Leilani. The music is just a preset from an electric piano. The dance is completely spontaneous, though it is called her "Vector Dance" - based on a character from the movie Despicable Me.   I uploaded it as a .mov file, so you probably need QuickTime to play it.

This Week

The really big news for this week was Jerry. After making it to something like day 87 and taking his stem cell transplant on an outpatient basis, he was admitted to the hospital for the first time post-transplant for pain in his side and a fever of unknown cause.

The pain, apparently, was pretty horrible, and Jerry ended up spending something like 3 days in ICU.

Only today did we find out that it was almost certainly pneumonia, and antibiotics and breathing treatments got it well enough and quick enough that he spent only one day out of ICU in the hospital, then went home to his apartment today.

I visited him ... well, no, I didn't.

On Sunday, before I knew exactly how long that day would be, I told Dr. Kissim that I was going to get some extra walking by going to the Critical Care Tower to visit Jerry. Dr. Kissim's reply was immediate and firm, "No, you aren't."

He then proceeded to firmly and clearly to tell me that not only was I not visiting Jerry, but that I was not going on the Critical Care Tower, period. "I'm not losing all my good work," he said.

When I went back in on Monday, the nurses set up appointments for us with "Home Infusions," so that we could give our own Micofungen, thus allowing us to have real days off. They set that up for Tuesday.

In the meantime, on Monday, they also scheduled me for a bone marrow biopsy. That's where they punch a little hole at the top of your pelvis and extract bone marrow. That was at 2:45 pm. It would be a full day at the hospital, but with a break between getting the rest of my magnesium in the morning and the biopsy in the afternoon. (The biopsy shows disease-free. Excellent. I'll hear about how much of my marrow is from the donor on Friday.)

After the biopsy, I popped down into the clinic for a quick dose of Neupogen, the stuff that makes my marrow work extra hard to produce cells.

The reason I'm telling you all this about Monday afternoon is that right before I left, Esta Works, the nurse practitioner who's primarily handled my case, called. She called the head nurse in the clinic.

"Could you tell Mr. Pavao not to visit Jerry? In fact, tell him also to stay away from 11 North (the floor I was hospitalized on). In fact, tell him not to be at the hospital unless he has an appointment!"

They came in and told me.

Jerry went home today, but I've still been told to stay away from him. I guess they don't appreciate the idea of our sharing pneumonia with one another.

His brother did drop in on me today, which was a happy visit. I wore my mask the whole time he visited, as I didn't really want his brother to carry the pneumonia over, either.

I'm excited for Jerry getting well. He also hits day 99 in just over a week, so they're letting him go all the way back to his home in Virginia for a couple weeks. I suspect I won't be allowed to see him until he gets back from that visit.

Today

So it's today: Day 43, February 29, Wednesday. I'm at home after getting another 3-hour dose of magnesium.

Magnesium has to be given slowly by IV, or it can damage the veins. I'm taking a medicine that depletes minerals like magnesium and potassium, and I haven't been eating well for weeks, so it's not exactly a surprise that I need magnesium.

I'm eating much better today, so I'm hoping the need for electrolytes will go down.

Tomorrow's a free day again. The "Home Infusion" people got hold of us and trained my wife to give me IV's at home. They put the medicine, in our case Micofungen, in these little inflated balls. My wife hooks them up to my PICC line, opens the clamp, and the ball uses the pressure of its inflation to push the medicine into my veins. Pretty neat.

She even cleans out the "lumens," the three ports of the PICC line, with saline solution on the days we don't go to the clinic. It's like she's become a minor nurse. Pretty neat.

The ports or "lumens" that hook me to the IV.

Okay, that was a lot. It's all the catch-up news. Hopefully, now that I'm caught up, there'll be only some news, and I can include the "chatty" parts again.