Catching Up

I'm back on my feet this morning. At least somewhat.

My wife told you the story on her blog, so I'll spare you most of the details.

I spent most of the weekend in a haze. Saturday was fevered dreams, most of which involved discussing or contemplating medical things which were over my head, and which I had to earn the right to talk about. So whenever I woke, I didn't want to go back to sleep because I felt like I didn't have anything I was allowed to dream about. Sleeping just seemed like intensely hard work, not rest.

Fevers produce delirium, and you can reason in any direction in a delirious state.

I can't remember much of the weekend, except that to me the emergency room seemed too busy to give any priority to getting antibiotics for me. Nor did I think they understood what a 0.1 white blood cell count meant. So any time I woke up, I checked on my antibiotics, and I tried to get across to them that I didn't care about medications for headaches or nausea until I was getting antibiotics to treat the cause of the headaches and nausea.

Saturday night, I was so weak that when I stood up in the middle of the night I passed out, pulling down the IV pole with me. That was a fiasco, handled very quickly and very thoroughly by lots of people. I just remember standing up and sitting down and people pulling my pants down because there was blood on them. I just did what everyone said and went back to bed.

I started waking up out of the haze Sunday afternoon, but it doesn't seem like I was back in reality until yesterday morning.

I had a mild heart attack Sunday night. If they hadn't told me what it was, I would never have known. I felt a heaviness on my chest, and it took a little more effort to fill my chest with air. My wife tells me that I asked for nausea medicine right before, I think. Her report of what happened will be more accurate. After about 10 minutes, my chest felt fine, but I broke out in a sweat, mostly on my head. I never considered that something so mild could be something important. If I hadn't been getting blood at the time, I'm pretty certain I would not have reported the chest heaviness.

So, based on a 15-minute discussion with the cardiologist and about 5 minutes of research on the internet, though I did make the effort to skip several ehow, and wiki-answer sites to get to an actual cardiologist-run site, here's what happened.

Your heart doesn't just provide blood to the whole body, it has to provide blood and nutrients to itself, too. I think the first branches off the aorta as it leaves the heart are the left and right coronary arteries. The left coronary artery splits into two more major arteries, and all three have numerous smaller branches that keep getting smaller until they end in capillaries, where the blood cells go through single file, dropping off oxygen and nutrients and picking up waste.

In the arteries of your heart, about 45% of the cells are red blood cells (40% for women). In mine, on Sunday night, about 23% were.

The red blood cells carry nutrients as well. I hadn't eaten more than a few crumbs in 48 hours, so those few red blood cells were not well-supplied.

My heart itself had been running at high-speed for that entire 48 hours, never dropping below 90 beats per minute, and often over 140, about the heart rate of a jogger at a moderately difficult jogging pace.

So somewhere among those coronary arteries, probably in a very small one because my heart attack was very mild, there was enough blockage that between the blockage, the thinness of my blood, the hard work of my heart, and the lack of nutrients and probably water as well, a small section of my heart called it quits.

It's possible for that to happen without damage to the heart. (I'm thinking that would happen only because the blood returned to that part of the heart pretty quickly. Not sure.)

The reason that they know it was a heart attack is because they immediately took blood, and I had elevated cardiac enzymes, indicative of a heart attack, and apparently the symptoms I describe are textbook heart attack symptoms. I didn't know that.

My EKG afterwards was normal. I got an echocardiogram, which is basically a long, careful ultrasound (sonar) reading of the whole heart, using exactly the same technology used for birth ultrasounds (which is how parents can know the sex of a baby). I haven't heard the results back from my echocardiogram. I had one a month ago, and the cardiologist told me yesterday that my October echo was " good; no, better than good."

So, hopefully I'll hear today whether anything has changed.

One thing has changed, which is that the cardiologist got the doctors to raise my minimum hematocrit, the percentage of red blood cells in the blood, to 30%, rather than 25%. I've gotten blood two days in a row. I'll get blood again today to get over 30%.

On the good side, my white blood cell count jumped to 0.3. That's still extremely low, of course, but it is a sign that my body's ready to start producing blood cells on its own again.

I feel great this morning, though I have nothing like my normal strength.

I want to say thank you to all the people who've told me they are praying for me (mostly personally, not through this blog, though I know there are people keeping up through this blog as well). There are so many such people from so many places, including entire churches, that I'm embarrassed to list them. I'm a little awe-struck. It almost doesn't seem right.

But I'll take it.

Thank you to all of you. May such love abound in the earth.

For the record. I still believe that all things work together for good for those who love God and are the called according to his purpose (which is everyone who will heed his call). It's all good!

We're not losing our motto, or our faith.

By the way, I got this blog's motto—It's all good—from a little girl for my birthday. Thanks, Katie!

Upping the Adventure Scale a Bit

Our grand adventure got a little more adventurous this weekend.

I'm not up to blogging just yet, so my wife wrote one for me!

November 4: Living by Grace

I've been talking to my wife and to friends about bravery a bit, though my talking to friends has been by email and text mostly. My neutrophil count is zero, so I'm limiting human contact. In fact, I'm limiting contact, period. I touch as little as possible with my hands, and if I notice that I've touched something that someone else could have touched, then I wash my hands.

Hillside at the Grande View apartments

Back when I was going straight to transplant, before I had the third round of chemotherapy, Nurse Works told me, "If the first round kicked your butt, this transplant round will really kick your butt!"

Well, the first round didn't really kick my butt. Except the hemorrhoids, it was remarkably easy, even with a couple fevers from an infection from the PICC line. Thus, while her warning got me prepared, it didn't frighten me much.

The third round, however ... Now that kicked my butt. It's not the horrible cramps and muscle pains, though those were the worst actual pain. I barely remember those. It was whatever the Cytarabine did to my brain. It was miserable, unpleasant. When the other nurse, Meghan, saw me on Monday, she almost looked relieved versus the Friday before. "You seem yourself," she said.

Yeah, no doubt. The Cytarabine didn't really kick my butt; it kicked my brain.

So now, the thought of another round of chemotherapy, with the almost certainty of bad hemorrhoids, which I had again this time, and the potential of facing Cytarabine again, plus probably three more spinal taps ahead, is frightening. On top of that, the chances are good that I will get six total body irradiations. Picture a sunburn in your esophagus. Have you ever had heartburn? Picture heartburn, then getting a sunburn in your esophagus, and then going back the next day to get a new sunburn!

"Pain medication will be your friend," Nurse Works said.

Note: I really like "Nurse Works," and in person I call her by her first name, Esta. She is very nice, inspires confidence, and nothing negative is implied by "Nurse Works." I just like the name.

So I started to get a little bit frightened.

Now, I wasn't too worried about being brave. The most certain source of bravery is necessity. Based on my research, which is considerably less than that of the doctors here at Vanderbilt, I agree with their assessment that my likelihood of relapse, apart from the marrow transplant, is 99.9%. I have no choice. Now, I could ask for a reduced intensity transplant. Then I would get a little bit less chemo, enough not to frighten me, and only one dose of radiation rather than six. That would not frighten me. Walk in the park.

If I did the reduced intensity, the "non-myeloablative" transplant, no one knows the odds that I would relapse. I'm pretty sure that the doctors would advise against it but that they would agree to it.

It doesn't seem wise to me. My leukemia wandered all over my body out of my blood. It went to my spinal fluid, my lymph nodes, and my spleen. Our best shot at getting all of it before we install a new blood system seems wise to me, and before God, I'm comfortable with that. (It's still amazing to me how the whole process works!) If you know me, please pray that's a wise decision. I'd be open to you telling me you've got something from God thinking I should do otherwise.

Anyway, the point is, I was getting nervous about the pain in my future, though I knew I had no choice but to simply face it, even if I was a whimpering coward, though I was somewhat confident that I wouldn't whimper. It's not that I'm particularly brave, but I know that whimpering and timidity just makes everything worse. At some point, I would have to pluck up my courage, announce "I'm going to do this and do it well," and get on with it.

Until then, there was a lingering nervousness in my gut, if not in my Spirit.

My wife's been assuring me that I didn't need grace last week, I would only need it when the time came. She wasn't worried about me. God would come through.

I'm really not used to living nervously, and I don't like it. So yesterday, when I got a text from a friend asking how it was with my soul, I told him I could use some prayer for bravery and faith.

Now this is not any friend. This is a pastor from Uganda who's traveling in the U.S. for a while. I've spent a lot of hours with him, and I once drove him from Tennessee down to Florida. We picked up a hitchhiker together who had just gotten out of prison for a double homicide. We have a certain connection!

Anyway, later that day, I was walking. I got a phone call from a Memphis number I didn't recognize. I answered it, but the person just hung up. Wrong number, I assume. Then I looked up, and I saw the fall foliage on the hillside by our apartment, and there was something inspiring about it. "Thank you, Father, for this grand adventure," I prayed.

The most amazing thing happened. Every bit of nervousness just melted away. This joy came down on my heart, and I immediately sent a text to Wilberforce, the Ugandan pastor. "You been praying for me?" I asked. He answered, "Of course. Praise God."

I mention the phone call from Memphis because it gives me, on my phone, the exact time that happened, which was 5:13 pm yesterday. So if you were praying for me just before supper yesterday, you can take credit for really effective prayer.

So today, even after typing out everything I typed out above, I feel great.

It really is a grand adventure.

Amuse or a Muse?

News real quick: My blood counts are low, as expected, but I didn't need blood products today. I go back Friday to check them again. My immune system is bottomed out, with a white blood cell count of 0.1, or basically nothing, and it's expected to stay that way for about another week. The nurse told me there's some sort of cold going around, so she wore a mask as well as I.

I'm being very careful, as I should, and thank God there's nothing to report.

So ...

There's a half marathon next weekend here in Nashville, and three of my friends—ladies—are going to run it in my honor. At least one is collecting donations for the Leukemia & Lymphoma Society (feel free to contribute). As I walked this afternoon, I thought, "I'm going to go run that thing next year myself."

I may be fooling myself. Several people have told me about the lingering fatigue after a bone marrow transplant. But I'm holding onto the dream until Life proves otherwise.

Anyway, I got to crafting a Leukemia & Lymphoma Society support email in my mind as I walked, and I liked it so much that I thought it a sin to let it sit until next year. You can't contribute to my next year's half marathon yet, so you might want to consider Alaina's this year.

Here's the letter:

************************
Dear Sir/Ma'am,

I don't think I would have wanted to receive a letter like this in the past, but today, as one alive from the dead, I'm a bit more concerned about what's good, true, and beneficial than about what you or I like. Hopefully, you're of a better natural temper than I would have been in your shoes.

I am going to be running a half marathon in support of the Leukemia & Lymphoma Society. I would like to ask for a contribution in a rather exact amount.

I'd like to ask for the amount of your next trip to a restaurant, determined by your own best estimate.

Then, with my apologies in advance to those of you whose mindset is already such as I'm about to describe, I'd like to ask you one more thing.

Would you cancel that next trip to a restaurant and tell the reason to the person who invited you? Would you tell them that you wanted to purposely make a choice to make your life matter today and that you wanted to feel it enough to remind you to make it matter every day?

Do you know what the word "muse" means?

As a verb it means "to thoughtfully consider."

Do you know what the word "amuse" means?

At first I assumed it was the conjunction of the word "muse" with the Greek prefix "a-," which means "not." Thus, "amuse" would mean "to avoid thinking."

But I was wrong. As it turns out "amuse" is from the French amuser, which meant "to stupefy." It was a conjunction of ad- and muser, a word that meant "to stare stupidly."

No society has ever had as many amusements as American society. And no generation has had as many amusements as our own. We are devoted to stupefying ourselves and avoiding having to think.

We are the most pleasured and least happy society of all time.

In fact, I think that many of us have forgotten what it means to be happy. We only know how to be thrilled.

There is no satisfaction deeper than that of a deed well done, and there is no longer-lasting satisfaction than that of a life well-lived.

Few of us consider now how we ought to live. Among the few who do, guidance has become limited and scattered. Fools are as likely to be considered experts as the wise are. Finding the way is difficult.

What I do know is that there is power in a good beginning.

I pray that this letter is a beginning of happiness for you if you do not already possess it. I pray that you may possess the joy of a life well-lived. I am offering an opportunity to take one step, to deny luxury one time for the purpose of doing good, and in doing so, to develop a habit that will knock at the door of your consciousness each and every day. (Though I must clarify here that I am not asking anyone to forego all amusements, nor do I think that necessarily a good thing.)

I am afraid that I believe that the telling of it to another may be as essential as the doing of it.

Finally, for those of you to whom this letter has no application, please consider this cause if you have no other that pulls at your purse strings. And if you do, I thank you for the time in reading this letter, as I cannot say that this cause is better than all others.

Thank you,

Paul F. Pavao
Alive from the dead ... with a purpose

PICC Lines and Platelets

I had to get my PICC line pulled yesterday. Due to a computer glitch, it didn't happen until the end of the day, which led to a bit of interesting thinking about blood counts. I'm going to try to get more exact information today.

I'm sitting at the hospital with a platelet count of "<5." How much less than five I don't know, but you should see ... Well, just a minute, and I'll show you.

Platelets, as you may know from this blog, are the cells that make your blood clot so you stop bleeding. Anything over 150 is "normal," but most people have a count over 300. Mine, as I said, is something less than 5. It's common for people with such a platelet count to get red spots all over their body. It happened to my friend Jerry when his platelet count hit 4. (Jerry, by the way, is due back Wednesday to begin the transplant testing if his mouth has healed well enough from his dental surgery.)

They were worried about this redness! It was much worse today. Even more oddly, I never had a PICC line in my left arm. My computer somehow mirror-imaged this picture!

Anyway, they sent me home Friday telling me to keep a careful eye on the PICC line because of its redness. On Sunday it was worse, so on Monday morning I sent a message through the great and previously reliable "MyHealthAtVanderbilt.com" web site. It's also the place where I can read my own blood counts. I gave the nurse practitioner a very thorough description of how it looked. That was easier to do with words than I expected.

I didn't get a response to that email, but I did get a response to one I'd sent over the weekend. I figured that they had debated whether to deal with the PICC line, then decided to wait until my appointment today. I didn't give it another thought.

At 4:30 pm or so, I got a call from Vanderbilt asking whether I'd gotten a message from them. I told them I hadn't, so the person told me that Meghan wanted me to come in so she could see the PICC line. We hopped up and drove in, hoping to beat Nashville traffic. No problem, it was all against us.

Meghan took one look at it and said, "Pull it."

I asked whether we could check my blood counts already, since my platelets were already at 33 on Friday. I'm still officially at the height of chemo, so all my blood counts should be crashing. My white blood cell count, for example, is now 0.2, which is basically nothing. I'm being very careful about everything I touch.

She agreed, and another nurse took blood before she took out the PICC line. We then patched up the hole in my arm, which didn't stop bleeding very well. In fact, I just left the gauze and bandage on my arm all night, and you should see ... Oh, that's what I was going to say above. You should see what that bandage did to my arm with no platelets. I'm unusually sensitive to Band-Aids in the best of health, but here, look at this:

The circular part with the hole in the middle is where the PICC line was. Above and below it are bruises just from the Band-Aid being on overnight. Yikes.

Okay, so I'm in a room, and I'm just getting platelets (and I got that hole in my arm wrapped rather than bandaged). They're orange, but I'm told that if they get platelets from a pregnant woman, they'll be green!

They type platelets. I'm A positive. However, it's not necessary. You can get platelets from anyone.

I asked the nurse here how dangerous it was to have platelets under 5. She said something to the effect of, "Oh, it's dangerous. If you fall or bump something you could bruise badly, and if you cut yourself it could be hard to stop the bleeding."

So I asked her how low is too low, and she said that there are signs and symptoms. There's some term that I've now forgotten for the second time for little red spots breaking out on your body. The other sign, of course, is bleeding that can't be controlled.

So I asked her that if I saw the little red spots on my body, should I go to the emergency room. She said, "No. Just call in and ask what they want you to do."

Okay, so my interpretation of all that is that a platelet count of next to nothing is dangerous but not officially an emergency.

I guess this is a medical blog today. I feel great. I get winded crossing a room, but my red blood cell counts aren't that bad. Well, for a leukemia patient on chemotherapy, they're not bad. No pains. We're still in perfect fall weather. Hard to picture a better day.

Oh, one last thing ...

The platelet count didn't show up on MyHealthAtVanderbilt.com until about 10:30 last night. Like I said, the count was simply "less than 5."

I'm not a doctor. All I know is that my friend Jerry had blood spots all over his body when his platelets were 4. Mine were apparently 4 at best!

I told myself, "If this were an emergency situation, Meghan would not have sent me home. She had to know this was possible. She also didn't flinch at the thought of someone have red spots on their body, and she casually looked to see if I had any on my arms or lower legs earlier today. Jerry, too, waited overnight after he had those red spots, and he was just fine."

Nonetheless, I had to ask myself if this was the kind of thing you at least call the emergency room about.

I don't know what you do in such situations, but I ask God what to do. It's served me well for nigh on 30 years now. I really felt like I just needed to relax and go to bed, but your head and your gut don't always agree on such things. I can choose not to worry, but that doesn't mean I can just lie in bed and fall asleep.

I ended up getting a late night email from a missionary friend in Mexico. I emailed him right back and asked him to pray that I would rest. I told him my conscious mind wasn't worried, but that didn't mean my gut would let me sleep. Then I settled on the couch to read The Shepherd's Castle by George MacDonald, one of my favorite authors.

Fifteen minutes later, I was exhausted. I checked my email on my phone to see that my missionary friend had not only prayed for me, but he had typed a prayer back to me in an email. I sent him short thank you, then slept soundly till this morning.