Thrilled to Death: Paul Pavao's Leukemia Blog

Day 43: Out of the Hospital and Home

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 29 Feb 2012 23:16:00 +0000

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.

Day 33: Building Up

noreply@blogger.com (Paul "Shammah" Pavao) — Sun, 19 Feb 2012 21:19:00 +0000

I'm way behind. I've been so tired. It's been difficult to do anything but sleep. It probably doesn't help that I'm not eating anything at all. Everything makes me nauseous.

The doctors say it's graft-vs.-host disease, just minor, but it took a while to eliminate all the possible infections and start treating it. So the minor steroid they started with didn't do any good at all. They just started a stronger steroid today. We'll see how that does.

The main doctor switches every two weeks. So day before yesterday I had Dr. Inglehardt. Yesterday and today I got Dr. Kassim. He was a lot more pushy about getting up and walking, which I have been doing, though not nearly as much as before. I've been doing 7 or 8 laps (about a quarter mile) just once or twice a day. Dr. Kassim always throws in threats and promises. "Impress me, and you could go home Sunday. Make me mad, and it could be a week."

I never can tell how much he's joking when he says that stuff.

My counts are climbing steadily now. My white blood cell count is 1.8, a big jump from 1.1 yesterday. I believe something like 3.6 would put me in the bottom of the normal range. My red blood cells counts are sitting steady, but my new bone marrow is not up to making platelets yet, so they give me platelets every couple days to keep me in a healthy range.

That's it. No great stories. I've had lots of visitors, who have been very gracious to do most of the talking while I just listen without much energy to talk.

There's a potent antibiotic that gets cut in half tomorrow. They say that antibiotic causes all the same sympmtoms the Graft-vs.-Host causes. GI problems, tiredness. We'll see if dropping that tomorrow plus the steroids they've added will take care of my iron stomach and lack of appetite.

Overall, the doctors are happy, and they still expect me to go home in the next few days. They don't think these problems are unusual, just typical for a transplant patient.

Day 28: Falling Apart at Mid-Day

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 15 Feb 2012 03:13:00 +0000

Well, I told you about my upbeat morning, so I may as well tell you about my collapse this afternoon.

I'm on my 33rd day in this room. It really seems to me that it was easier to handle the pains of the early days, the mucositis and all the other stuff, than the ongoing upset stomach and blah feelings of these later days.

This afternoon, as I dragged myself the three feet from the bathroom to the sink to wash my hands, and then the five feet from the sink to my bed, I collapsed in the bed, feeling like I barely had enough energy to breathe.

I had wonderful news in the morning. I know to pray. I know to count my many blessings. I know to press through because it matters to my wife, my kids, and so many other people. I know to stay grateful. I know to remember that people have been through much worse than I've gone through.

None of that made it into my emotions. They hit rock bottom, and I hit the nurse call button.

The nurse came in. "Can I please talk to Esta or whichever nurse practitioner is on call?" I asked.

"Sure," she said. "Is it urgent, or should I tell them it can wait if it needs to."

"It's not urgent," I told her.

Two minutes later, Liz, one of the more brash and loud of the nurse practitioners, came in, asking how she could help.

"I'm out of energy,"I told her. "I think I just need one of you to tell me I'm not dying."

She got down on her knees, took my left hand in both her hands, and she said, "You are doing great. It's remarkable you made it this far doing so well. We can help you."

Then she added, "If you need to talk to us, it's urgent. Don't ever tell the nurse it's not urgent again."

I just started crying. It was terribly embarrassing.

Esta joined her about two minutes after that. I told them I was just worn out from constant stomach upset, no energy, and not being able to find my normal upbeat attitude.

They told me that I had a bad case of "hospitalitis," (I've been in this room 33 days) and that it was also time for them to move faster on taking care of my stomach problems. They sat around and encouraged me, and they told me they were going to give me some anti-depressants to take care of the constant blah feeling.

They told me that most of the team is sure that my gut problems are graft-versus-host, but they'll step up the treatment for it, though they had to get the doctor's approval.

A few minutes later, I got a pill that is a mood-pick-me-upper. I was ready to give in and let my mood be helped by an anti-depressant.

Liz had asked me if I'd ever taken that particular pill, and I told her that before my leukemia I never took anything for anything. She said, "Then you just rely on my choices, and we'll make adjustments if need be."

Since I was laying on my bed crying in the presence of two nurses, I didn't fight that at all.

The pill helped, I think. My wife's been around all day, and we've had great conversation. Esta showed back up towards the end of the day to tell me the plans for my gut problems.

They can't just assume my stomach issues are GVH. Apparently there's a virus called CMV that most of us have in our bloodstream. Since I got cord blood, I didn't get any CMV from the babies, but back when I was searching for a donor, I tested positive for CMV (as does about 70% of the US population). My CMV level is at 680 or something right now, which makes it possible that the problem is not GVH, but the virus.

So they're upping my antiviral medication, then tomorrow they're going to scope my stomach and intestines, take a couple biopsies, determine exactly what the problem is, and begin treating it.

Until then, I'm on the greatest weight loss plan there ever was. I look like Gandhi, all bald and skinny. They told me, however, that if my stomach feels better not eating, then don't eat.

One fortunate thing is that I know that Jerry went through something similar. Then the doctor showed up one day, and he promised Jerry a miracle pill that would make him feel better within two days. That miracle pill is a mild steroid, and if the problem is Graft-vs-Host, then the steroid will return my appetite to normal almost miraculously in a day or two.

We won't know, however, until the biopsy results come back, which won't be until Thursday ... or maybe even Friday.

Anyway, I thought I'd let you know that my strength ran out, and my hospital team came running to the rescue, offering everything they could.

I have to imagine that people who don't have the immense support system I have run out of steam a lot faster than I ran out of steam. But for those of you getting ready to do this after me (Tamara, Richard, among others) don't feel bad if suddenly you hit the wall and there's nothing there. Everyone's knocked down more by one thing than another, and I guess "rotgut" and the blahs are what did it for me, and I've had wonderful people around me for days.

I've had a lot of other times in my life where I've been spiritually at a point like I was at physically today. Every time, God didn't suddenly give me strength. He let me collapse, and I found a team around me to hold me up, and I learned all the more that God is for me and that there are a lot of people who love me.

Thank you to all of you and your prayers.

Prayer Requests

I have a prayer request for you. Tamara's blog, "Our Journey," is in my blog roll, and it's usually near the top because she posts more regularly than most people on my blog roll. (Newest posts go to the top.) She's heading toward chemo and transplant soon. Please pray for her. She already has people praying for her, but what she's going to do is not easy. Nor is what her husband is going to do, being the care partner, easy, either.

Then there's Richard, a friend I made through email, who is going through his bone marrow transplant in South Africa. He will begin Total Body Irradiation on March 4th, and his transplant is March 14th. Please pray for him as well.

Richard has a great team of doctors that has been getting advice from all over the world. He's gone through multiple rounds of chemotherapy, but his BPDCN (see tab above) has never gone completely into remission. He's always had a bit of the bad cells in his bone marrow.

Nonetheless, it's been driven down so low, they feel safe giving him the transplant and depending on the new immune system to take care of what's left. (And, just for my peace of mind, I searched the PubMed database, and transplant has worked effectively even when complete remission has never been achieved.)

Please pray for him, and his care partner, Nichola, just as you have for me and for Jerry.

I think it's great we get to share all these prayer requests. I'm on the prayer lists at Jerry's home church in Grundy, VA and on his brother Dump's home church, too. I feel like I have friends there, and I have promised them that when I'm well—thanks to their prayers—I'm showing up there to tell them thank you and to meet all those wonderful people.

What a great adventure God lets us live! It's all good, even when I fall apart and can't handle it.

Day 28: My Valentine's Day Card!

noreply@blogger.com (Paul "Shammah" Pavao) — Tue, 14 Feb 2012 08:41:00 +0000

Inwardly, I'm running swift laps around the 11th floor, waving my "It's All Good" flag.

Outwardly, I'm a little too tired for that. I settled for sitting up with a Sprite, blogging.

I got up at 2 am because I needed to go to the bathroom. Sleepily, at the side of the bed, getting my energy back from the walk to the bathroom, I decided to see if my blood counts are back for today.

The login process on my phone is slow. I don't type very quickly on an iPhone. I made sure to get it right the first time. Then I enlarged the page so that I could see the link "Clinical Record" well enough to push it.

I clicked the link with my finger, and the page of numbers that are too small to read came right up. I enlarged them, looking mainly for the first one, the date. It was 2/14/2012. My counts were back already.

Right next to it was the other number I wanted: 0.4. My White Blood Cell Count had doubled.

I quickly noted that my red blood cells were down and that my platelets were in single digits, so I'd be getting platelets today, then I started thrusting my weary fists into the air, screaming halleluyahs as silently as I could. No sense waking my wife.

I turned the phone off, and sat in silence, enjoying the happiness of a real climb in white blood cells. Suddenly it dawned on me that 0.4 WBC is a count of 400. That's high enough for them to have taken a neutrophil count as well. I turned the phone on, went back to the web page, and sure enough, there was an ANC (Absolute Neutrophil Count): 240.

That's the favorite number for the docs to watch.

A day like today means that we can pretty much count on some sort of daily upward progress on all future days.

Last night I told my wife, "I'm not going to feel like this forever, right?"

She said, "No." Then she kissed me on the cheek and said, "In fact, I don't think you're going to feel like this very long at all."

Well, my stomach's still all messed up, but here comes the cavalry to help bail me out!

That is, assuming that it's not the cavalry actually causing the stomach problems through Graft vs. Host disease, but we're watching for that, and we still have more ways to tackle that if it proves to be true.

Either way, I'm so excited!

You know, yesterday I got to help plan my son's wedding. It was so pleasant I cried. I talked to my eldest son about his college plans. He's found a plan that might work, and I had some encouraging news along those lines.

I've had good reason to count my many blessings these past few days. I've just had to force it due to an overwhelming set of the blah's. Today, it's rising right out of me.

Of course, the nurse is taking advantage and giving my platelets early. That means I just took Benadryl and Tylenol as pre-meds. Give the Benadryl a half hour or so, and I won't be aware of the platelets, and they'll be shaking me awake to get my vital signs.

I'm one step closer to seeing a lot of you!

Day 26: The Same But with a Few White Blood Cells

noreply@blogger.com (Paul "Shammah" Pavao) — Sun, 12 Feb 2012 22:10:00 +0000

My WBC count got to 0.2 yesterday. It stayed there today! Yippee!

Okay, that's all the energy I have for today, I'm going to bed.

I've had lots of visitors today and yesterday. Mostly I watched them rather than interacted with them because I didn't have enough energy. They all said it was great to see me, anyway. I raised really good kids. (Count your many blessings, count them one by one.)

In an effort to save me from how horribly depressed I look, the doctors suggested I walk around the hospital. We even crossed an outside section to get to the children's hospital, which I was told is much more colorful than the adult hospital. That's true.

There's no good way to put a coat over my tubes, so I wore a shawl and my wife slung a blanket over my back. They also wrapped a scarf around my neck, thus ensuring I wouldn't fact any sun, either. I wore a pair of gloves, and I wore a huge, hang-down hat that didn't allow any sun on my face or cheeks, either. I had ordered that hat just for that purpose.

In order to make my little video so that all of you could see it, I had to load it to youtube rather than blogger. Loading it to blogger doesn't always do the job, for some reason. In the process, I ran across this video from a lady who got a bone marrow transplant in 2008. What I want to know is why she was allowed at the beach four days after she got her central line placed!

I'll tell you, too, I saw the following video before I saw that one, and I cried and cried. I understand these people's feelings, and it was so great to see them returning to their lives.

As for me, my stomach is constantly upset. Nothing I eat tastes good, and everything I eat is forced. I prayed about it, and God gave me a little cartoon picture to look at in my mind when I eat, which I am not going to share with you. It's just a silly cartoon, but it helps with both ignoring the taste and with the fear of throwing up everything I eat.

My attitude is blah, blah, blah.

Otherwise, everything is fine. I have no good reason to have a blah, blah, blah attitude, so I try to ignore it best I can. I sleep a lot, but that's probably from having no real nutrition to work with. (Sorry, Michael, I could only drink a quarter of the last Ensure I tried.)

What's exciting is that Dr. Engelhardt thinks that my stomach problem may be graft vs. host. That would be a really good sign, and eventually they'd give me a steroid pill that would cure the problem. I would love to have a settled stomach, that would be awesome. But for now, we just have to watch and wait.

Sometimes stomach GVH heals on its own. Sigh ...

The sun is shining. Nashville is beautiful today. My son is going to California for computer training, and then he's coming back to get married in April. I have another son being a strong adult working through the difficult decision of how and when to move out to California to be closer to a girl with whom he's developed a serious relationship. My children are giving me every reason to be delighted that they are wise and know how to make godly choices. So underneath the blah are a hundred reasons to rejoice and cry.

Thanks to all of you who are sharing this journey with you. For those of you coming behind, this is the worst part for me. It's the hardest work to choose positive things, and there's the least energy for the work.

Thank God for friends and family who love me and visit me, and for my wife, who never gets tired of me.

Day 24: Everything's THE SAME!

noreply@blogger.com (Paul "Shammah" Pavao) — Fri, 10 Feb 2012 17:18:00 +0000

People are being really nice to me because they can see how dragged down I am. I'm trying to be cheerful, but there's just no energy. If I stop for a moment, I fall asleep. On the other hand, the sleep I get is much better than the sleep I've gotten any of the rest of the time I've been in here.

Nothing changes day by day. My white blood cell counts stay the same, and my red blood cell counts vary only a little. I need platelets pretty much every day, and we just wait for counts to come up.

Falling asleep on the side of my bed

I don't want to eat at all, so they've given me a chart to track my calories on. If I don't eat enough, they're going to put me back on IV nutrition. As a result, I ate my oatmeal at breakfast, drank my milk, and drank some juice. I don't know what I'll be trudging through for lunch. I'd rather just not eat.

They're going to try to let me walk the hospital some this weekend just to get me some space and a cheerier attitude. I must look pretty depressed. I really don't mean to be that way. I can't say I'm depressed. I'm just tired, and I don't want to eat.

I walked twice today anyway. It's not that hard to force myself to walk. The bottom of my feet aren't hurting anymore, so it's easy to do. It doesn't really bring any energy, though.

I'm also continuing to get the blogs done, even the Through the Bible in a Year blog, so that's good. Technical difficulties meant I couldn't post this morning's blog until about 8 or 9 am, but otherwise, I've managed to stay on it, which is encouraging.

Hopefully, I'll have some more energetic pictures to post over the next few days.

Day 22: Count Your Many Blessings

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 08 Feb 2012 14:42:00 +0000

There's really nothing new to report. Everything's the same. My counts haven't come up, most of my rashes are gone, and we are just waiting for my stomach to start wanting food and a couple small rashes to fade away.

I slept a really long time last night, but in segments. Between trips to the bathroom—I have to suppose I still have a bit of a bladder infection—and medicine and vitals, I only sleep 1-2 hours at most. Each time I woke up, however, I was more depressed.

So when the nurse came in this morning and asked how I felt, I told her I felt terrible. I told her there was nothing wrong, I just felt terrible. Everything I put in my mouth tasted like my mouth, and my mouth tastes blah.

The nurse told me I was probably entitled to one blah day.

So I laid down, and I heard that song in my mind: "Count Your Many Blessings; Count Them One by One."

So I did, beginning with my children and my wife, I started counting my blessings, and I immediately started crying. My wife, who had just heard me talking with the nurse, asked what was wrong and came and laid down in the bed next to me. Once I got my voice I told her what I was thinking. We just laid there, and I recounted in my mind all the wonderful adventures I've gotten to live on this earth.

I've never been all that good a person. I've had problems with addictions, and, as a younger man, with a temper that was dangerous. But since the day I met Christ, I've believed that if I turned my life over to him, what he would produce would be far better than anything I could have hoped for. So I've walked away from my own hopes, dreams, and my own use of time, to pursue whatever I believed he was putting in front of me to do.

Boy, has that paid off!

He let me find the church. He let me live with people who helped me deal with my anger. He showed me the problems with my ideas of righteousness, and I watched as he taught us as a church to learn his righteousness, a righteousness based in love, understanding, and an ability to make a difference in a person's life.

I have a lot to give thanks for. My depression is gone, though I can't say I have any physical energy at the moment.

So, here at Vanderbilt we're hanging out waiting for blood counts to rise, and giving thanks to God for his many blessings.

Day 20: Going Forward

noreply@blogger.com (Paul "Shammah" Pavao) — Mon, 06 Feb 2012 10:07:00 +0000

All the really bad things that have to do with the no-immune-system/mucositis phase of the transplant seem to be healing up. My fever's under control. My mouth is almost completely healed of sores. Hemorrhoids are minimal. All the old rashes seem under control or gone, and the spot that looks like a boil, but can't be, shrinks every day. Even the urinary tract infection seems to be symptomless now, though I'm still taking medicine for it.

They took me off TPN (Total Parental Nutrition) about four days ago. I have no baseline pain medication, though I did ask for oxycodon twice yesterday to deal with some new pains coming up.

I'm making the switch from the problem being that I have no immune system to the problem being that I have a new, foreign immune system.

That's a good thing.

Some of the Old Problems

Right forearm after biopsy for my first rash

Different view of the right forearm rash biopsy

Right chest and shoulder after Hickman Catheter was infected and removed

Bruises on my belly from the insulin shots

This was the shot no one liked. After numerous dry heaves one morning, my eyeball just sort of gave out and oozed gel all over except the iris. Combined with the rash on my face, it's a gruesome picture.

Hopefully this is better. My potassium got high, and so they had me on a heart monitor and oxygen (perhaps they were giving me blood at the same time, I can't remember). We smiled our way through all these things. Between the hospital's pain meds and careful care, and everyone's prayers, this has not been a rough experience ... though it's obviously not been a pretty one, either.

Moving On to the "Easier" Part

My White Blood Cell Count (WBC) has only been as high as 0.2, two days ago, but the fact it reached that high establishes that the stem cells have engrafted in my bone marrow and are making cells. (3.9 to 10.7 is normal for WBC.)

The low counts are not really a problem. The new white blood cells leap to work as soon as they hit the bloodstream, healing where healing is needed and fighting pathogens where that is needed. They are a don't-think-about-yourself, don't-wait-for-backup kind of army, fearless and aggressive.

So most of them pop into the bloodstream, do their job, and die, and we can't measure them.

We can see the effects in healing, though.

Graft-Versus-Host Disease (GVHD)

These cells have been produced from the stem cells of a baby's umbilical cord, donated at birth by the mother. Those stem cells go to my bone marrow, and they become hematopoietic stem cells, which are stem cells that can only become blood cells. As they reproduce and become blood cells, they are becoming blood cells with a different DNA than the rest of my body.

Thus, it is very easy for these new cells to see all my body's cells as the enemy.

Part of that is good. You want the new immune system to hunt down and destroy any lingering leukemia cells there might be, though we have made every effort to burn or poison every one in my body no matter where it might have hidden.

The bad side, of course, is that you don't want the new immune system to hunt down and destroy my organs and useful cells!

In come the doctors, who have become amazingly skilled at this. They put that new immune system on a leash with immunosuppressive drugs starting even before the transplant. (This also prevents any remaining old-immune-system cells, if there are any, from attacking the new stem cells, thus helping engraftment.)

They then monitor drug levels and your responses, giving the new immune system more and more freedom, just bit by bit, until they see GVHD rise up. When they start seeing GVHD, then they suppress the immune system a bit more and take care of whatever GVHD symptoms arose.

The most common forms of GVHD are in the gut and on the skin. Intestinal cramping and pain or rashes are the most common symptoms, although they do check for other causes of both.

Over the last couple days, my heels have started burning, almost like they're blistered. I assumed it was walking too much in the wrong shoes, but when I told the doctor he asked to see my palms. I showed him, and he said, "Okay. We'll keep an eye on it."

Apparently, burning in the soles of your foot and the palms of your hands is a common GVHD symptom.

Again, you want some of that. It lets you know the new system is working. It's just that you don't want it to get out of hand.

I also got a new rash yesterday, worse on my right hand than on my left, that makes it look like I'm wearing a glove. My ears are pretty red, too. I'm waiting for them to declare any of those to be GVHD, but a couple nurses have told me about "Cytarabine Radiation Recall." Apparently that's a delayed reaction to Cytarabine, a chemotherapy I haven't had in about three months, or radiation, which I got at the beginning of January.

So, we'll see!

The biggest difficulty of the last two days has been trying to eat after they got me off the TPN, the IV nutrition. I was on it for six days or so, and I couldn't figure out how to ease back into eating. Even a small meal filled me for hours, and not pleasantly so.

Yesterday seemed a bit of a breakthrough there.

The dark red ear

The Miracle Hot Dog

Yesterday was Super Bowl Sunday, so 11 North (the hematology oncology floor) had a little pre-game party. After struggling all morning with wanting to eat anything, I went to their little party and I made a hot dog. At least, I thought I made a hot dog. Actually, I made a sausage ... with ketchup and mustard ... on a white hot dog bun.

I ate two-thirds of it, digested it with no problem or nausea, and my appetite has been improved ever since!

Whew, touchdown!

Day 16: Going Forward

noreply@blogger.com (Paul "Shammah" Pavao) — Fri, 03 Feb 2012 00:35:00 +0000

View today from my Vanderbilt window

Well, this is the time to go forward. Things are definitely healing each day rather than growing worse each day. They stopped feeding me by IV last night after about a week on their TBN (Total Body Nutrition.)

The frightening thing about going back to eating is how my body will respond. Indigestion, painful stomach cramps, or diarrhea that causes hemorrhoids to flare up. I've been taken it very carefully: soups with rice or noodles, cooked vegetables (no raw until I have blood counts), and the occasional Ensure™ drink. I don't get full because getting full hurts, and it takes a long time to relieve.

But that's "only" frightening. Taking it careful makes it very likely that my stomach won't experience those things, and the ability of the nurses to manage nausea is almost magical.

A New Beginning!

The really nice thing is that every step forward is a real step forward. That hasn't been true for months. When my blood counts settled back in October after the 2nd round of Chemotherapy, we all knew that was just until next round of chemotherapy. If I made some walking or jogging progress between rounds of chemo, I knew that was conditioning I could not hold onto.

So ever since the transplant, I've been telling the staff in the hallway, when they see me trudging, barely enough energy to push the pole, "I'm training for a 5K!"

It's no longer just exercise to keep the lungs healthy. I get to keep the benefits of the exercise now.

Day zero was a big turnaround. We went from treating leukemia by destroying leukemia cells (and a lot of other cells with them) to managing this new immune system as it grows so that it learns to do its job without burning down the hen house. (In that metaphor, I would be the hen house.)

Moving to an Adult Diaper: Depend

The company is Depend, by the way, not Depends. Here, I have the picture to prove it:

I have to tell you at least a couple humiliating stories.

On some night, at least two nights ago, I woke up needing to go to the bathroom. I went in the bathroom as normal, but I realized that, once I got there, I could not have avoided peeing one second longer.

That made me a little concerned, especially if you know what "racing to the bathroom" means in a hospital on when you're attached to an IV Pole with several pumps.

Sit all the way up as you get out of bed, but don't stand up in order to make sure I don't pass out.
Stand up, holding onto something that does not roll, until you know that you are not light-headed.
Roll IV pole close enough to bathroom door that the tubes will reach through the door and still let me reach the toilet.
Grab between four and seven tubes that are looped on the IV Pole so as not to drag them on the floor.
String out the tubes along bathroom doorjamb, then close door on them, making sure they don't overlap and "occlude." You'll get a lot of beeping from the pumps if that happens.
Only then can you turn from the door to the toilet, and it has to be the right way or you'll wrap yourself in your IV tubes.

Well, as you may be able to guess, it happened ... At night, thank God!

This is the IV Pole and lines I'm talking about.

I got up, did all the things I just described until I was grabbing the lines that I had looped over the IV Pole. They were tangled, and I heard from my body, "Houston, we have a problem!"

I skipped all the other steps. I tore the bathroom door open, and pulled my IV Pole up into the bathroom behind me, leaving the door wide open.

Thank God for pajama bottoms. They were flannel and absorbent. Not a drop reached even knee level, much less the ground, and I made almost no mess at all transferring from filling my pajamas to filling the toilet. I then rolled up the underwear in the pajama bottoms, put them in the dirty clothes, then used wipes to get the tiny mess I left.

I got off easy, but I was taking no more chances.

I called the nurse for an adult diaper.

It's so sweet how these beautiful, young ladies—for that is what most of these nurses are—have the ability to casually tell you that yes, they do have an adult diaper, and they will get one for you. No giggles or anything. (The rest of the nurses, the ones that aren't beautiful young ladies, are either men or beautiful, but not young, women.)

Over the course of the next few hours, I found out that as soon as I started walking toward the bathroom, I would lose all continence.

I filled four diapers this way. Waddling to the bathroom to change them is really not that uncomfortable a process. They do a great job of keeping you dry.

Take heart, parents, our kids aren't suffering in their modern, skin-protective diapers.

Ah, but the other part wasn't so easy. I called these diapers because they are diapers; disposable, adult diapers, but diapers nonetheless. After you throw one away, you have to put another on! I put the first one on by myself, but I couldn't get it tight enough to feel good about it. I knew for safety's sake I was going to have to humble myself. My wife was all too delighted to change my diaper for me, the perfect blend of exceptional graciousness and twinkle in the eye.

The next night we resolved that. By providing a urinal at the bed that can be emptied easily. I don't have to walk to go now.

We also resolved the diaper change issue by buying Depend™ Pull-Ups. I'm a big boy now!

They think this is caused by a urinary tract infection, which hopefully is being treated by a medicine they are giving me. The incontinence has diminished. There was also a little blood, which alarms people but happens with most bladder infections. That's diminished quite a bit. Finally, there was tissue, skin tissue, like what you'd peel off your shoulder after a sunburn, that I was passing. That's gone.

This urinary infection and the pseudo-boil on my right arm are probably what we're watching most. Everything else is healing rapidly, and even those two seem to be healing day by day.

A Spiritual Lesson on Humility

It doesn't matter how often I teach walking by the Spirit, I eventually start substituting good things for spiritual things. I was working hard at keeping up on the Through the Bible in a Year Commentaries, but I ended up, one more time, getting my eyes on my duties rather than on God.

Last week a friend asked me for three prayer requests for their prayer team. Immediately, I typed, "#1, that I can keep blogging!"

I then thought about the things that would be more normal prayer requests in my situations. I told her that #2 is protection from fevers, and #3 is protections from mucositis and all its complications.

Then I realized the most imporant one of all at the moment, which is that the new stem cells engraft in my bones.

I felt somewhat proud about choosing to make some tiring, spiritual service in something I'm sure God has told me to do. The feedback from those who read the Through the Bible in a Year blog is incredible. I've gotten some of the best letters from that particular enedeavor versus all other's I've done, and it's only a month old!

But this week, I couldn't do it. I made a standard form for each day and let the readers discuss among themselves.

Then God pulled me aside to remind me that there's only one in charge, and I'm not him.

The warm side of that story? I got back out of myself, and started communicating with other patients. Even if it were just a good morning as we passed in the hall or a purposeful attempt to give a few extra seconds. This first day, just since my reenlightenment on the matter, I got in a great discussion this morning with the wife of a patient heading toward transplant. Then another worker came through the room anxious to talk about her life. It was a delight. I gave her one of my books.

There are so many people who live like this all the time. Free in their spirits, following God.

Ministry is always the overflow of fellowship with God. We must never make our ministry "ours." We don't work for God; God works through us. Make your ministry your own, and you will be taking it away from God, not from anyone else.

Day 14: Something More Light-Hearted

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 01 Feb 2012 00:13:00 +0000

How things can change in a day! Earlier today I posted about whatever I did to my eye, and I put a picture taken right afterward.

The picture is pretty dramatic. I had just leaped out of bed to experience massive dry heaves. In the picture you can see the gel that leaked out everywhere except within the iris area, and you can see the swelling in my eyes as well.

My lips are also swollen from being chapped and from mouth sores, and we had not yet figured out how to stop the rash that was all over my face and a lot of my body.

The picture that starts this blog was taken today, two days after my little traumatic event which had happened in the morning (on Sunday, then, I guess).

Anyway, as you can see, vaseline for the chapped lips, plenty of continued mouth rinsings, and antibiotics and hydrocortisone for the rash on my face and body, my whole head is recovered! I look like like an old, bald guy, with almost a double chin and spots and bruises all over my body.

I haven't had a lot of energy today, so I've rested a lot.

Day 14 is the official bottom of the pit, where you start hoping for things to begin healing and recovering. Of course, cord blood cases like mine take longer. Of course, I already started to begin healing and recovering.

I still haven't told you about the adult diapers I started on yesterday. (I moved up to Depend® pull-ups today, though. I'm a big boy now!) It's not as bad as you think, and I'll spare you a lot of details. There haven't even been any messes to clean up!

Anyway, I shared a couple videos the other day from Nick Vujocic, who is well-known now. All us 70's and 80's Jesus Freaks remember Joni Eareckson Tada, who is still doing good for the Lord as a quadriplegic. The link is to her biography on her site.

Day 14: Waking Up A Little!

noreply@blogger.com (Paul "Shammah" Pavao) — Tue, 31 Jan 2012 20:31:00 +0000

It has been hard getting posts out this last week between exhibiting new symptoms, then being part of the "symptom demolition derby."

Dr. Jagasia told me once, "We try to control everything we can prior to transplant because after transplant, we have no more control! After transplant, we can only react."

So they've been reacting.

My short term memory was already terrible, and radiation and chemo has made it worse (though possibly only temporarily). So while I can promise anything I write about today really did happen, it may not have happened in the order or on the day to which I attributed it.

Strained an Eyeball While Vomiting

After they pulled the central line from my chest because it as infected, and put the PICC line, they knew they may need me to take more meds orally because there might not be as much room on the IV pole. One medicine they began to give orally was Zofran.

Zofran by IV works great for me, and I've been almost nausea-free through all of chemo and radition ... almost. Orally? Not so much.

So, early that morning I woke and raced to the sink, where there's a basin for me to throw up in and hoped that any noises I made there would wake my wife to call the nurse. Of course, I soon saw that there was nothing to worry about. I could have called the nurse. My body used every muscle from my pinkie toes to my scalp to wrench something out of my completely empty stomach, but I got nary a drop.

Interesting exercise program, though. Picture a lovely woman's voice with some light jazz in the background. "Squeeze every muscle in your body ... now harder ... don't worry about what contortions you're thrown into ... now harder ... now ... release."

"Repeat 20 times."

You know, I think when I'm done, I'm going to complain about some of the methods used by the trainers in this weight loss/dietary training regimen I've checked into.

Still, I lost 10 pounds the first month. Have you stuck to your New Year's resolution?

All kidding aside, at the end of that, I looked at my left eye and saw what you see in the picture above.

No one seemed concerned. They said, "Let's just watch it", but in about 4 hours the swelling was gone, and it was almost back to normal. In the two pictures above, you can see the difference.

What is really odd is that last week a friend back home had the same thing happen to her when she sneezed while she was cooking dinner. It's the only other time in my life that I've heard such a thing. Imagine that. In the 2637th and 2638th weeks of my life I see something happen twice that I've never seen before.

Day 14: Catching Up One Thing at a Time

noreply@blogger.com (Paul "Shammah" Pavao) — Tue, 31 Jan 2012 10:28:00 +0000

There's been a haze of new developments and new activity over the last couple days.

The brain radiation is finally providing its promised "inability to focus" and "confusion." The result of this is that I blog much more slowly.

I type pretty quickly, especially if it's a teaching I'm developing. I already have all the ideas in my head, and I'm trying to put them together. The ideas come rushing, I get them all down, and while I'm typing my argument, I'm considering possible refutations, the types of people who would do the refuting, and whether the refutation is worth addressing before it ever comes up.

That system doesn't work so well now. As you can see, it involved holding multiple thoughts in your head, lining them up, then firing them down your fingers.

The problem is that I can't hold as many multiple thoughts in my head as in the past. Worse, if I thought of something would be addressed later in the document, I'd drop down about ten lines and type it in. That might be a question, a scripture, or another way to write the document.

When I get there to type, however, I just can't type as fast as I used to.

Apparently, I have a lot of patterns that I use in typing. In my mind, when I type the word "dextrous," for example, I type dex, and then -trous. They're one word on the screen, but my mind breaks into two "typing syllables," because over 20 years of heavy typing have developed muscle patterns, and I can type "trous" really, really fast.

Remember the old "macros" from MS Word? Same sort of thing. You could memorize any series of mouse clicks, mouse movements, and keystrokes, name that series, then hit a shortcut key and the computer would perform it for you.

Anyway, my macros, my printing syllables, are degraded right now, so my typing's slower.

Health Updates

The big news, to trump all others, is that on Day 13, my White Blood Cell (WBC) was 0.1.

Now that is not a lot of white blood cells. In fact, Nurse Liz this morning called it "one" cell.

However, even that 0.1 WBC does require my body to do some production. I don't think that qualifies as engrafting, but it indicates the stem cells have found their new home."

The rash's are all improving. I'm still on total body nutrition by IV, but now they're recommending I begin eating as I tolerate it.

Ok, I'm going to post this. I've fallen asleep two or three times during the post. Not everything is here, surely not even the most interesting stuff, but I'll just add a coupe of shortly.

Day 11: Losing the Dear Hickman

noreply@blogger.com (Paul "Shammah" Pavao) — Sun, 29 Jan 2012 04:47:00 +0000

I better keep this moving so I don't fall asleep.

They pulled the Hickman Catheter, which folks up here on 11 North call a "central line." They did this because one more blood culture turned up positive, and they're scared that some of them may stick to tubing and be difficult to eradicate.

That brought up a host of questions. Do I just immediately go back to eating after a week off, and how are my stomach, intestines, and hemorrhoids going to handle that! And if it's bad, and I can't stay on the regular IV pain meds, then am I going to be able to handle this?

The answer? For me it was to realize that I don't actually know any of those things. I don't know that I have to go back on real food right away.

So I just passed the afternoon getting a new PICC line inserted, then getting the catheter removed.

Getting the Catheter Removed

Here's how she told me the catheter would be removed. Well, first let me let you see the catheter:

You can see where it goes into the skin. It's not a tiny tube. Then it runs along under the skin, curves over the collar bone and down into the jugular and subclavical to get to just above the heart.

All the striped areas are just reactions to the adhesive. They were changing the bandage that day.

If you have trouble placing the picture, my neck is draped far over my left shoulder. In the top right corner is my neck.

So this catheter tunneled under about three inches of skin before wrapping over the collarbone.

The lady expained that they put some sort of matrix around the tube to help it adhere to the inside of the skin. She was hoping, however, that since it had only been two weeks, mine would not have adhered much.

I closed my eyes and prepared for whatever I had to face.

She gave me lidocaine shots over a lot of the course of the tube. Then she started pulling.

I don't how long it lasted. I don't know how much pain I bore or didn't bear. I tried to be quiet, be myself, and no one complained about me later. I was already so tired from being awake for hours and so dazed from being on pain meds for days, that I wasn't thinking clearly. I took advantage of that, and I kept telling her, "I'm fine." Though sometimes I was sucking in my breath pretty hard. She patched it up.

My wife may have to correct that description tomorrow. She was there.

Wife's note: I'm inserting a short video here of the procedure. You will see the doctor inserting scissor tips to separate the tubing from any organic material that has grown around it. There is no sound, though Paul's face speaks for itself a bit, until Paul is told to take a deep breath, at which time the catheter is pulled out. The procedure did not take long at all. Here's the video:

Dazed and Confused

I haven't had Dilaudid in large doses. I understand that the Dilaudid I get, all by IV, is about 500 milligrams per dose. I've heard of people getting 30 grams, or about 60 times what I get.

I try to be careful with it, but it's started building up. The most noticeable side effect, for me, is that you start dreaming as soon as you close your eyes, and I seem to dream the entire time I'm sleeping. Worse, it's not that hard to open my eyes, see all the people around me, then close my eyes, and see an entirely different set of people.

So this evening Jerry was visiting, talking to me about something, and in my exhaustion, I closed my eyes a little bit. I was watching something on TV in my dream, and I started to comment on it. Well, on Dilaudid, you can still move when you're dreaming, so I raised my hand, pointed at the TV, which was off in the real world where Jerry and Rayette were sitting, made a comment about what was on the news. Realizing that silence was not the appropriate response, I opened my eyes, and there were Jerry and Rayetta, looking at me with bewildered, soon to be laughing eyes.

In fact, just now, I heard someone make a wisecrack about Benayah's coffee not being served down on the 3rd floor. I heard it! With no one in the room except the nurse. Since it sounded like a wisecrack, though not one the nurse would actually know, I said, "yeah," out loud. Fortunately, the nurse just figured I was talking to my computer and went on.

Anyway, I'm off the Dilaudid. So far, so good on the pain, and hopefully my thinking is clearing up.

There's a lot of funny things that have happened. I'm not going to write on those until I think I can do so intelligibly, though there's probably little hope of remembering things in any order.

Day 11: Sigh. He's losing the Hickman Line...

noreply@blogger.com (Paul "Shammah" Pavao) — Sat, 28 Jan 2012 20:03:00 +0000

Paul's wife still here. I'm going to jot a quick update so that when Paul's back you won't have an epistle to read...

Well, regretfully, they have to pull his Hickman line today. This is Day 11. He has had positive cultures from his lines for three days in a row. I believe these are staph infection cultures but I'm not positive about that. I do know he has come up positive for the Staph infection in the myriads of tests they've been running on him the last few days. He also has something brewing under his arm for which I will post pictures here in a moment.

First, let me update you on his rash. His rash is definitely improving. They suspect it was a reaction to one of the drugs they've been administering.

This picture was taken yesterday. I would say this is 2 days into his rash. This side was later in breaking out than other areas. The original areas are definitely clearing up, including his face.

We had Dr Dummer come yesterday to look at it. He is the director of their Infectious Disease department and we found out this morning that he is, according to a NP here, world-renown. His advice is highly respected amongst stem cell transplant doctors all over the world. She said they are very fortunate to have him here. Wow! We didn't realize! We just casually conversed back and forth yesterday with this really nice man... he is definitely extremely knowledgeable. He seemed to agree with the thought that this rash was probably a reaction to one of the anti-biotics they've given him. They took Paul off of two anti-biotics and he's still on two. (Sigh. I realize that were Paul writing, you would now know the names of the two anti-biotics they discontinued...)

Yesterday (Day 10) he awoke with what looked like a painful boil in the armpit area of his right arm. A boil would require white blood cells to create puss and he doesn't have any. They did an ultrasound yesterday and confirmed no liquid. Just a mass. That looks infected.

As you can see from the picture, this morning it is definitely more red in the surrounding area. The red mass itself is also larger. They did a CATScan this morning to get a better look at it. I don't know the results from that at this time. I do know they are increasing his anti-fungal meds. They found small nodules on his lungs that could indicate a fungal issue of some sort. Not necessarily likely but they are increasing those meds as a precaution.

A doctor from the surgical team will be coming by today to look at this mass. They are considering cutting it open, removing whatever might be necessary and packing it closed. They will weigh this option against the non-invasive route due to low platelets and blood counts. They've also talked about biopsy-ing it.

He is having his Hickman line removed this afternoon. They will install a PICC line. That is a smaller portal inserted in the arm. He has had three in the past. All three have been removed due to infections. He's not crazy about PICC lines. As they are very slow to remove Hickman lines here, the fact that they are doing so indicates a strong need to. Personally I'm glad for the PICC line. The only other option is multiple IV lines in his arm(s) and that thought makes my eyes roll in the back of my head. (The wife's version is much less medical as you can see...)

Paul has a huge transition to make today. As of this morning he was wonderfully completely dependent on everything IV. I say wonderfully because it has brought him much relief. He has a continuous pain pump. Low dosage but continual. That will be switched over to long-lasting Oxycodone taken orally. As I mentioned in the last post, his food intake has also been IV, providing his GI tract a break during this Mucositus time. He'll have to go back on foods today. His mouth with its sores has shown great improvement so we're hoping this will work for him. Hopefully the severe diarrhea will not return. Lastly, they are switching as many meds as they can from IV to pill form. A post-transplant patient has to take a LOT of meds. Again, we're hoping he can swallow fairly easily.

Paul himself, though sleeping a lot, just looks GREAT! His energy is up. His moods are great. He just looks great! The doctor this morning was commenting on the contrast. While they are working hard on a possibly alarming infection, Paul, well - this video taken on Day 9 will show you what I'm trying to describe. Have a look...

I'm sorry the sound quality was poor there. I was saying in the video that he was receiving a bag of blood at the time this video was being taken. There's just no keeping this guy down! But no one really wants to! :-)

I suggested he purchase a couple of these if he can find them. What do ya think?

That's all for now. There's a lot going on but Paul seems do be doing really great. Thank you for all your prayers, support, and encouragements! I'm doing all I can to help him here on this end...

Day 7: A Wife's Perspective

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 25 Jan 2012 20:26:00 +0000

At Paul's request I'm going to write in his place today, keeping y'all up to date. Yesterday, Day 7, was rather eventful and has left Paul, well, snoring rather loudly beside me here this morning as I type. His care partner for today, Ashley, was teasing him about pulling the paint off the walls ...

Let's see. Yesterday morning started off wonderfully uneventful with 2 bags of blood. That meant Benadryl beforehand and a little drowsiness afterwards. They had installed a continual pain pump the day before and that brought much relief to his mouth pains.

He'd developed the start of a rash that was more prominent yesterday morning. On routine doctor rounds they decided to discontinue the steroid cream and get a biopsy as the rash was more prominent on his chest and stomach. It had also extended some to his legs. (It had already been seen on his back and forearms.) They explained that this rash was a bit unusual so they weren't quite sure what the cause was.

Now for those who are fairly new to this blog, I would just like to point out that the word "unusual" gets used an inordinate amount of times when explaining things to Paul about his particular cancer. It's led me to conclude that his diagnosis of AUL - formerly thought of as Acute Undifferentiated Leukemia - is in fact properly named Acute UNUSUAL Leukemia! Just sayin'.

Things got eventful after lunch. Though Paul doesn't have lunch per se. He has a continual drip that feeds him. This has allowed his GI track a respite and proven very relieving to Paul. His "virtual food" as Dr Goodman called it consists of all his nutrients, proteins, minerals, and dextrose.

They add a bag of lipids (fats) twice a week. They also check his blood sugar throughout the day, often resulting in insulin shots in the belly. Because he is currently Neutropenic, the areas on his fingers and stomach from sticks and shots are bruised a bit and slow to heal. Not alarming but they add to his ever evolving "I've been through stuff" look. Every once in a while one of his shot areas will continue to bleed a bit because he's also low on Platelets. In fact he'll be getting a bag of those today.

Around 1:00 pm yesterday Paul quite suddenly was overcome with fairly violent chills. He headed for bed. He also clearly had a fever at this point, though his temperature had been rising since the day before. Chills and a fever have happened twice before in this trek of his. Both times were during a Neutropenic stage and both times resulted in a bacterial infection.

He had me climb in bed with him as this brought some relief in times past. The extra warmth helps the chills subside. This, I confess, makes for precious memories for me along the way. As those who have loved ones going through difficult things will attest to, it's just nice to be able to do something! Much of this he has to endure on his own. The Chemo pumps directly into his veins only. No one else's. So, often, the side-effects are his alone to bear.

After about 20 minutes the chills were not really lessening so I got up to text our prayer support. I don't think either of us can fully express the gratitude we feel to God and to the people He's brought us (both medical and non-medical) from all over the world who are going through this with us. For me, one of my greatest comforts lies in the ability to pick up my phone, send one text to Tara (and now one to Dan here in Nashville) and from there my request will be sent to countless people who love us and are committed to praying for us throughout this time. We in turn reap the riches of their prayers.

As I climbed back in bed yesterday, I mentioned to Paul that I texted people, asking them to pray that his chills would stop. After a moment, Paul, a little groggy, said something about it being ok even if God said no. I couldn't really think of a reply to this Brave Heart so I just hugged him and snuggled closer. About 10 minutes later, I had a reply. "Honey," I said smiling, "You've stopped shaking." Coincidence? I don't think so.

The staff did come in shortly after and gave him Demerol along with some oxygen in an effort to relieve the shakes long-term. And perhaps they did. Perhaps it was prayer. Perhaps a combination of both. For this wife, I was just glad they stopped. His fever, however continued to stay up.

Around 3:00 or so the dermatologist, Dr Fowler, (should have snapped a pic) came in for the biopsy. She, like everyone else, was very personable as well as efficient. You should see her whip those stitches into place! A biopsy and two stitches finished before we even knew what happened. Well, Paul didn't know what happened. He was sleeping thanks to the Demerol and accompanying anti-nausea medicine.

Dr Goodman, with Fellow Lauren, NP Liz and an observing student doctor.

Because there's a history with fever/infection, the staff are incredibly vigilant and seemingly several steps ahead of whatever might try and come up.

Cultures(?) came back today, confirming that Paul has the start of a strep/staph infection. They had already started Paul on the appropriate anti-biotic earlier yesterday. He's in wonderfully good hands here.

Knowing I was going to do this update I jotted a couple fun quotes from this team. Liz, the one with her hands crossed-not a good pic I'm afraid - is a HOOT! She checked Paul out first thing this morning and was encouraging him to rest today. Upon his reply of "I don't want to rest, I have things to do" she replied with, "The world will wait for you. It's been turning a LOONNGGG time...Maybe your brain cells will work even better tomorrow if you take a rest. Let's make today a HOLIDAY, shall we?! I LOVE an overachiever...except when they think they have to TYPE!" All of this was met will laughter from me and attempted chuckles from Paul (remember, he has mouth issues.)

Dr Lauren Z, holding the flashlight, (I can only write "Z" because she has a long last name that's hard to learn when one is surreptitiously stealing glances) is referred to here as a "Fellow." Here's a quick lesson on Doctor Progression.

(The following info is compliments of Martie. Nurse/Medical Encyclopedia Extraordinaire!)

Don't ya love the dimples! To die for!

There are medical students - still in school. Then Interns - first year out of school. Still "green." Then Residence - 3-7 yrs working on a particular specialty. Finally a Fellow. They've done all the above. They've chosen their specialty and study in that area for 1-3 years. At the end of that they take a very specialized test and become an attending doctor upon completion. (In keeping with Paul's blog, for others coming along behind him to do a transplant, I'm including all this info. Tamara we are following your progress and rejoice at your 14/14 match!!!! Who is like God?!)

Here on the transplant teams we don't see medical students, but there is a Fellow. (Medical students observe during morning rounds but they don't interact with us. Well, they smile when they enter and leave the room...) Anyways, the transplant team doesn't like to have ever-changing staff. They like the constant throughout the transplant process and I have to agree that it's nice.

So back to Dr Lauren, the Fellow. She comes in from time to time with a very winsome smile. She's very thorough and was in our room almost immediately upon learning of Paul's chills. She introduced us to a term they like to use around here. She asked him, "Are you shakin' and bakin'?" (In reference to the chills and fever) As I said, the entire staff here is as pleasant as they are efficient. I would be remiss to not mention Dr Goodman. She's straight-forward, completely on top of things, and brings all of this to our bedside with one of the loveliest smiles of them all. She has been the one (I think) to set the tone of, "Let's completely stay ahead of the game as much as possible." Very pre-emptive and I LIKE IT!

Hopefully Paul will be back here tomorrow and can write in more detail about Vance and Martie, the amazing nurses who've carried him through this last rough patch. Though this patch may be a blur to him.

His "I've been through stuff" look

Last night Vance, the night nurse gave me a "heads up" that they would move him to ICU should his continued fever go up and his blood pressure go down. Just as a precaution. I sent a text to my prayer support and must have fallen right to sleep. We both woke up this morning to Paul's temperature back to normal and Vance teasing Paul about remaining asleep even when she had him sit up for something. We slept well and he's feeling much better this morning, though his temp is teasing us, fluctuating between 97-99. Still, it's all good!

New comfy sheets

Our "Vector" having fun where she's staying

Not just hanging on, but actually THRILLED TO DEATH!

Day 6: Update & Today's Inspiring Video

noreply@blogger.com (Paul "Shammah" Pavao) — Mon, 23 Jan 2012 18:44:00 +0000

Let's start with the video, and I'll give you the update on me afterwards.

This video is from the founder of TOMS shoes, Blake Mycoskie. He started a "sustainable" charity. The way to do that, it appears, is for his company not to be a charity, but a for-profit company. Basically, they sell shoes, but for every pair they sell, they give one away somewhere that it's needed. (I assume that's usually in a third-world country.)

This is the kind of idea that stokes me. Giving is good for the soul. I'm all for giving. I'm blessed by people who are generous, abundant givers.

But I love good, practical ideas, too, and this is a GREAT one. Blake's idea is not dependent on giving or on a good economy. It will do good and give as long as the economy is doing well enough that people want to buy shoes.

There's a book advertised in the video. I'll bet it's a good one. However, if you want to know more, you don't have to buy the book. There are dozens of YouTube videos on this guy.

Also, I found out about him from the article: "7 of the Most Inspiring Videos on the Web."

My Health Update

Judging by the reaction the nurses give when they look at my mouth, my mouth sores qualify as really bad. I have a couple sections back on my pallet that are oval, about a half inch wide and three-quarters of an inch long. The ovals are about half covered in blisters. Well, blisters is what they look like. I have others on my lip, and sometimes when they check my temperature, the thermometer sticks to them.

I keep imagining that this is what it feels like to come crawling in out of the desert, your lips and mouth completely parched.

Don't feel sorry for me. They give me pain medication for it. Guys crawling out of the desert don't have that.

Last night my temperature slowly worked its way up to 99.0 across the course of the night. I don't run 98.6 normally. I run 97.6. So it took about five readings to slowly get up to 99. That was scary. Fevers are a problem. I'm back in the 97's today, so that's gone, though Dr. Goodman says they may run a blood culture anyway.

My nose bleeds from being dry. If I blow it, I can always get blood. They told me not to blow my nose at all. I moisturize it with saline solution, and I dab at it if it runs a bit.

Definitely our best hospital picture so far

The hemorrhoids are doing better because I've been taking Imodium. That dries everything up. I'm really glad not to have to go to the bathroom. They have to make sure I have a bowel movement here and there, so I can't just take it indiscriminately, but preventing diarrhea is something I am really, really glad for.

Let's see, I also have a mild rash that they've prescribed a steroid cream for. The steroid cream can't be used on my face because it's too strong, so I'm just using lotion on that. Basically, all my skin is dry and sensitive.

Normally, the question would be, "Are you getting enough hydration"? My answer has to be, I sure hope they're giving me enough because they told me to avoid drinking except to take pills or if it's really needed for comfort. I can rinse my mouth all I want, but no drinking.

The other thing they're doing is checking my blood sugar every 6 hours. The IV nutrition they're giving me puts sugar (dextrose?) directly into my blood stream. Apparently, that's difficult on the body, as it's not used to processing the sugar that way. So they prick my finger every 6 hours, like diabetics do, and if my blood sugar is over 151, they give me a shot of insulin, which I take in my belly.

Jerry told me a few months ago that if there's an option, I should always take shots in my belly. There are less nerves down there, and sometimes I can't feel the shot at all. I have to ask if they really gave it to me. Mostly, though, it stings a little, but less than even shots in my arm. My dad was in the military. I'm used to getting shots in my arm.

A friend of mine in Ireland wrote me telling me about what he was going through at this stage of the game. His Hickman catheter—the ports I have up near my collarbone that let them give meds and take blood—had gotten infected and been removed. He was getting poked regularly and using a normal IV connection in the arm.

I won't even tell you about the other things he told me about. When I read them, I was ready to cry. I can't imagine what this blog would be like if I was going through that.

Uh, yes, I can imagine. It wouldn't have any posts for the month of January.

I have more stamina for walking than I did a couple days ago. Isn't that weird? I sleep more, though, and writing a blog can wipe me out for an hour or two.

Finally, because of the mild rash and because I have something of a tan from the radiation, I feel like I look like a wizened old man in the mirror. I've lost weight, too, so that just enhances the effect. (I've kept my New Year's resolution to lose weight, have you? Lol.) I don't know if you can tell or if I'm just being overly self-absorbed, but here's a picture:

I couldn't smile because it hides all the bumpiness on my cheeks.

Really Fun Inspirational Video

And finally, here's one of my favorite inspirational videos. This happened several years ago, and I've probably already posted it on the blog at least once.

Day 4: Fun Blog Today

noreply@blogger.com (Paul "Shammah" Pavao) — Sat, 21 Jan 2012 20:04:00 +0000

Okay, you have to see today's videos, especially if you've never heard of Nick Vujicic!

First, though, I do have one story from this morning. The nurse asked if there was anything new with me, and I'm having a little bit of itching, especially on my back. I'm sure my skin's just dry from the radiation and chemo (so are they).

So the nurse asks how long it's been itching, and I tell her just since last night. Then, not thinking, I pull my shirt up to reveal:

The nurse was suddenly horrified, and I couldn't figure out why.

"This is just since last night??!!" she cried in alarm!

Suddenly, I realized. "Oh, no! I don't mean the lesions!"

She gasped and said, "Don't ever do that to me again!"

Oops, sorry.

If you aren't one of those aware that my leukemia began with tumors on my back, those are just the leftover marks from the original tumors. The tumors shrunk and disappeared in the first 4 days of chemo back in July, but they left those areas on my back that look like birthmarks.

Nick Vujicic

Nick has an unfortunate last name, and there's a couple other things that haven't been perfect in his life, but as far as I can tell, he's doing better than most of the rest of us.

Here's another video. He's also got an inspirational site at LifeWithoutLimbs.org

Day 3, Part 2: Really Good Day

noreply@blogger.com (Paul "Shammah" Pavao) — Fri, 20 Jan 2012 22:36:00 +0000

I'm really glad to add this blog today. I didn't like this morning's very much. It seemed like a lot of complaining, though I'm trying to journal what's happening, so I hope it's not really complaining.

Anyway, I was amazed by a really good day so far. People have been wonderful today! Nurses, doctors, janitor, Jerry, nutritionist ... I can't remember all the reasons people have come in here. I'm not sure what it was, perhaps just the right combination of cheer and snappy humor. The janitor and I got to talking about fasting and especially about struggling through the third day of a fast.

That's Dr. Greer at the end of the bed back in October

And Dr. Greer just came in! I had given him one of my books, so he was just saying thank you and checking on me. I think he actually read it even, based on his comments!

Yesterday, my wife had a conversation with Little Richard, downstairs by the elevators. Yes, really! Little Richard! (I should probably know more about the guy, but all I know is that he's a musician.) He's being treated for something here at Vanderbilt.

My wife recognized him, but he actually struck up the conversation with her, not vice versa. Just picked her out of a group of four or five people at the elevator and started talking to her!

The conversation was short, obviously, but he gave her a book—about him, not by him—and signed it.

This is the radiation mask they used to hold my head in place for brain radiation, exactly molded to my face.

One of my other conversations this afternoon was with Dr. Strickland. I got out and walked 5 laps, which is 1/5 of a mile, and it was hard. In fact, it was so hard that on the last lap, I stopped briefly at the nurse's desk to lean on it and get up the strength to walk the last 30 feet back to my room.

Dr. Strickland came by just then, and he wanted to help me to my room. He kept asking whether I was okay, and I assured him I was just gathering strength. "Honestly, I'm not worried about passing out at all," I promised him.

"Yeah, but I am," he answered.

He let me walk back to my room, though.

So long distance has gone from 2 mile to .2 miles in 3 days.

This is Paul Pavao, signing off from the Vanderbilt Fun Center in Nashville! Good day to you!

Day 3: The Going Gets Rough

noreply@blogger.com (Paul "Shammah" Pavao) — Fri, 20 Jan 2012 14:45:00 +0000

I suspect the going isn't really rough yet. I think I'm just having to gear up for the first time.

My mouth gets more red and inflamed each day, though I don't have any actual sores yet. The nurse told me that the salt and soda mix may be too harsh already. I switched to "miracle mouthwash," which has lidocaine, a tiny amount of benadryl, and I think Milanta in it.

It's a real effort to get up and go to the sink to rinse, probably much like having the flu. However, if I fall asleep for a couple hours, my mouth is dry and burning when I wake up, so there's a lot of motivation to get up and take care of it. It may be inevitable that it gets worse, but no sense compounding the problem.

In a few minutes, they're going to give me a pain pump so that I can hit it and give myself pain medication whenever I want. Usually, that would be morphine, but morphine doesn't work on me. The last time I got morphine, they gave me two doses because my shoulder was out of joint and the doctor needed to set it. It didn't relieve any pain, and it confused me so that I could no longer deal with the pain myself. I really don't want to try that again.

So this is Dilaudid. It's pretty potent. I remember how well it worked last time when I was having terrible cramps and nerve pain from receiving Cytarabine in my spinal fluid. It comes in through the IV, so it goes into effect in about 10 seconds.

I don't need it right now, but it will probably be very helpful for hemorrhoid and going to the bathroom issues. I wish that getting IV nutrition without eating meant that nothing had to go through my bowels, but it doesn't. They want me to be at least a little regular. I don't know how all that works, and I really don't want to spend any time thinking about it.

I seem to sleep okay, even if it's all in one to three hour stints.

Because I'm sleeping in naps, the easiest time to get up and exercise last night was at 2:30 am! It just worked out that was when I felt most rested. I walked a half mile.

The hemorrhoids can affect the walking, and they may do so more over the next couple weeks, so I have some exercises in bed that I can do as well. The big thing, the nutritionist says, is to make sure there's enough exercise that I'm not losing all my muscle and only maintaining weight by increasing fat. The other thing is to make sure there's some harder breathing to prevent pneumonia.

Achieving harder breathing is easy. That just takes getting out of bed and walking to the sink at this point :-D.

I'm not walking quickly, that's for sure, but I'm not quite at "trudge" yet. I think "trudge" is coming soon, and the laps will keep decreasing for a while. Getting around takes a lot more effort than it did just two days ago, but putting one foot in front of the other is not really that bad once I'm up.

The changes from one day to the next seem pretty rapid right now, so I went ahead and described them for those who are interested and for those who are going to go through the same thing themselves. I won't do that every day, as that hardly seems beneficial.

In fact, now that everything takes a lot more effort, we'll see what's best. Maybe I'll just give you a very short update each day, or I'll just blog every few days. Anyway, if you don't hear from me, it doesn't mean I'm deathly sick. It may just be normal fatigue for my situation. Just a blog like this tends to sap all my energy so that I have to nap.

In the future, I'll also try to find something interesting that isn't just discussing my problems.

It's still all good. People are still serving me and saving my life. This is still God's path for me. I keep thinking of what martyrs for Christ have endured through the ages and what others in this hospital are enduring, and I remember that I have hundreds of reasons to be grateful and not a single legitimate reason to complain. I am not a suffering man, but a well-loved and extremely blessed man.

Day 2: Vacation's Over

noreply@blogger.com (Paul "Shammah" Pavao) — Thu, 19 Jan 2012 12:30:00 +0000

I still can't say I'm suffering much. This is still not as bad as the flu.

One of the problems with having things go so well until now is that I've obviously become kind of wimpy. A little discomfort, and I'm rushing around looking for remedies.

I never was a very tough sick person. Whenever I get sick, I'm prone to speaking softly, in a groaning voice, and asking for everything. "Can you get this for me?" "Could you get that for me?" If my stomach's nauseous, then I just don't want to move.

Maybe my wife's card should have said, "You know what they say: 'When the going looks tough, you make it look easy (because it is easy).'"

Beware, little more graphic here ...

Since last night, it's not so easy. My stomach is constantly upset or in pain. I have diarrhea, and going to the bathroom burns. (Maybe that's chemo coming out; as I'm eating very blandly.) I'm much more tired than I was.

My mouth's the same. If I go to sleep, I wake up and my mouth is dry and on fire. Rinsing with salt & soda still helps a lot, and so does the Biotene dry mouth gel and the pectin throat lozenges.

For those of you that may be facing this in the future, the pectin throat lozenges were especially helpful while I was walking. Also, I take L-glutamin, about 4,000 mg per day, at the advice of a friend in South Africa who is also going through similar treatments. He says he hasn't had any mouth sores since taking the L-Glutamin, though I don't know how much he's taking. (I did tell my doctors I'm taking it.)

I got up at 4 a.m. after a pretty solid 8 hours straight of sleep except for a couple brief breaks for the bathroom and vital signs. They wake me up every morning at 4 for vital signs, so it's a good time to plan the start of my morning. I force down a little breakfast to settle my stomach, then I rinse my mouth, dress, and walk.

I was still able to walk a mile, and I biked two miles very slowly, though that was too much. My fingers were tingling like the old days when the leukemia wasn't in remission. Back then exercise meant there wasn't enough blood left over to service the limbs, so my calves, forearms, feet, and hands would tingle from lack of circulation.

Fortunately, this week's Through the Bible in a Year commentaries are done because this blog is all I can handle at the moment. Time to go back to sleep.

Thank you again for all the prayers. I'm not expecting to cruise through all this with no suffering at all. I just want to live in the grace of God, always know that all these things are working together for good, not bad, and to be pleasing to God in all of this. I'm still remarkably fortunate, even if this gets much, much worse, and I still have the best support system of any leukemia patient ever, I'm sure.

Day 1: Pressing On ... With a Little More Effort Required

noreply@blogger.com (Paul "Shammah" Pavao) — Wed, 18 Jan 2012 12:46:00 +0000

Well, I didn't get that second blog up yesterday, but it will be worth it. Lorie, my wife, took a video of the transplant process. It was nothing like what you'd expect.

Now I've been there, done that, got the T-shirt!

Rather than try to explain it, let me let you see the short vids, which I uploaded to YouTube :-D. I would have just uploaded them here on my blog, but when I do that, it seems a lot of you can't see them.

Then the next picture is my favorite one from yesterday. Lorie bought a big helium birthday balloon and a dragonfly balloon. She set it up behind me, and we made a party of it, as you may be able to tell from the video, although I'm kind of distracted sending and answering texts back to Rose Creek Village. Jerry was there, too, and you can see him in the first video if you haven't seen him yet. He brought me his favorite Sonic shake, at my request, shortly before the transplant.

Okay, I guess that's two pictures, not one.

After Benadryl

I was a little out of it for a while. Benadryl is part of the pre-transplant preparation, and they gave it to me by injection into my IV line. It took about 3 seconds to hit my brain, and make me half-comatose, though there was enough time between that and the actual transplant for me to be awake enough to enjoy it a bit.

Afterwards, there was really just more sleep to report. The transplant took place from 4:18 to 4:35 or something real close to that. I then basically slept until 5 this morning.

All that sleep let my mouth dry out, and I have a mouth sore now. I did have to get up for vitals and trips to the bathroom, and I rinsed my mouth on every trip with soda and water, often following with a moisturizing gel, but it wasn't enough. The sore's just barely painful, though, so I can't complain. With as many people as are reading this blog, at least one of you is suffering through a much worse mouth sore, I'm sure. I remain a very fortunate, blessed person.


Jerry and Rayetta at the transplant

I got up at 5 am, and I forced myself to have a cup of yogurt. My stomach was really upset, but my experience so far has been that if I keep some food in my stomach, it does okay (assuming it's the right food!). Though I had to force that first bite down, it immediately relieved my stomach. I went and walked, and I found I was still able to do a 17-minute mile. So I biked a little, really slow, but more than a mile, then gently strolled and stretched for about 15 minutes afterward.

I still have more energy than I really ought to. Thank you again for all the prayers!

And for those from Rose Creek Village who sent me soup. I have never gotten so much pleasure out of food in my whole life. They settle my stomach for an hour or two at a time and warm and relax my whole body. They probably drop my blood pressure, they're so relaxing. You have to be mildly sick to appreciate food that way. I can't believe how good those soups have felt.

The transplant cooler

Here's a couple more pictures, just for fun. I'm a very blessed man.

One of the eleven syringes, three from one baby, eight from the other

Katie, the nurse practitioner, with the syringes from one baby

Ellen and Katie getting everything ready

Day 0: Just Barely

noreply@blogger.com (Paul "Shammah" Pavao) — Tue, 17 Jan 2012 09:09:00 +0000

Well, it's day zero. My "new birthday" as they like to call it here. I'm going to be born again physically this afternoon, so to speak.

A bone marrow transplant can literally change your DNA. It will change your blood type, though it can change it to the same one you already had. You don't begin to look like the person whose marrow cells you receive, but apparently the reason that the new immune system becomes less and less prone to attacking your body is because your body's DNA slowly begins to match the new immune system!

Napping

I'm up at 2 in the morning because I went to sleep at 7:30 in the evening. Somehow, I managed to sleep most of the way through that time, with perhaps only one interruption until 12:30.

Since mucositis doesn't sleep, I got up at 12:30 and took care of preventative maintenance. I made soup for my stomach, rinsed my mouth with a soda/salt solution, had a pectin throat lozenge for my throat, and I went ahead and walked a mile. Not easy!

At 12:30, the reason they woke me up was for vital signs. They do that every 4 hours, so there will always be a midnight and 4 am visit.

My blood pressure has been a problem. It peaked at 173/108 yesterday morning. It got all the way down to 138/88 at one point, but at a 10:00 reading this evening, I was back at 150/100. The 12:30 reading was 161/100. Not getting better.

The "care partner" went to ask about my blood pressure, and that's when I did the soup, the mouthwash, etc. I also walked, wondering if the walk would help some. It helped some. After the walk, my blood pressure was 151/98.

The nurse said, "I don't understand what the problem is with the blood pressure."

I have some thoughts.

My wife got me this card.

Now, I'm not a doctor, but if a person is going through stress at home, say his kid is getting in trouble and flunking out of high school, then don't we say, "No wonder his blood pressure is high"? If a man has financial troubles at work, is working late, and his business is failing, wouldn't we say, "No wonder his blood pressure is high"?

Or, let's say that I was just told, "You may have leukemia," then the doctor left the room to go consult with other people before coming back to give me a final word. Wouldn't you expect my blood pressure to be "through the roof."

So, let's see. Here's some ideas I might have for the problem today:

I have been given three times a lethal dose of radiation that only didn't kill me because it was spread over 11 days and half of it went directly to my brain. The radiation isn't still working, but my bone marrow and blood are full of dead and dying marrow and blood cells with radiation damage.
I have been given a powerful, directed poison that should be just completing its work of killing almost ever marrow cell in my body, plus destroying the mucous lining in my mouth, throat, esophagus, stomach, intestines, and rectum.
I have a stem cell transplant today that marks healing for me, but I've been told has a 10-20% chance of killing me in the next month. The odds are only that good because I'm so healthy.
After I manage the next four weeks, then the complications afterward only have about a 10% chance of killing me in the three months following. After that, the prognosis is really good ... assuming I don't relapse.
Odds of relapse? Impossible to calculate. Not enough data. We can be confident that there's a better than 50% chance I won't relapse, but it's certainly not 100% (except that I think all those things are in God's hands).
To help take care of the risks, I'm taking a number of medications with side effects, and I'm taking a couple (yes, only a couple) that are to manage side effects). One of the medications increases blood pressure!
Over the last three days, I've slept in 1-2 hour snippets. This evening I may have managed to pull off two naps of 2.5 hours.
My kids are three hours away and will be for another six weeks. The last time I saw them I couldn't hug or hold them, but could only talk to them for five minutes or so. I email and text the older ones.
My day is full of little things that I have to do and can't forget. Rinse my mouth, take pills, eat something soothing for the stomach, exercise, keep drinking, keep urinating.
I'm helping friends with some pressing financial problems by phone and visits to the hospital. Tax time is coming up, and I've always done the taxes for my business and for a couple others, and I don't feel like I have a good accountant back home to turn them over to.

I don't mean to complain. In fact, I'm not complaining. This is what God's got for me, and I can honestly say that I'm really glad for it. I'm not just accepting it; I think this is a great adventure.

But if we're looking for reasons that my blood pressure might be 150/100, which is 10 points over on both the high and low side—or ever 161/100 or 173/108—I think we may not have to wonder.

Again, I'm not a doctor or anything.

I'll post again later, probably after the transplant. This is Day 0, part 1.

That's assuming I'm not sick as a dog afterward. Jerry keeps telling me the stem cells are going to set me on fire.

Day -1: How Can This Be?

noreply@blogger.com (Paul "Shammah" Pavao) — Mon, 16 Jan 2012 14:09:00 +0000

I'm so much better this morning! How can this be?

Last night I didn't know whether I'd be able to sleep. I laid down, and my whole right cheek was just kind of sore. I felt very hot in my abdomen. My tongue burned a little like it was ready to break out in sores.

I did everything I knew to do. I drank a little. I'd been eating very calming type meals, several and small through the evening. I rinsed my mouth a couple times with the soda/salt solution they gave me. I used Biotene's dry mouth gel several times. I sucked on my throat lozenges.

Maybe I was doing too much!

I woke up repeatedly through the night because they're giving me fluid at a rate about a gallon and a half a day directly into my bloodstream, on top of what I drink orally. On top of that, I had a defective pump on my IV pole (there's three total), and it would start beeping every 1 to 2 hours. They just got that changed this morning.

This is all besides the taking of my vital signs and the urine specimens I have to give them. Both of those are every four hours, but they're staggered, so I had to get up at 10pm, 12am, 2am, 4am, and 6am—besides all those other things I listed.

When I got up, though, I did all the maintenance things that I wouldn't have been doing had I slept straight through. I rinsed my mouth, used the gel, drank a little to settle my stomach, etc.

I think I got two naps of over 1 hour last night, one of them almost the full two hours. I got up for an hour on purpose to finish editing Wednesday's Through the Bible blog post and to answer emails. That was enjoyable, and it relaxed me so I think that was the point I slept two hours straight, from 2am to 4am.

I got up at 5am and went walking. The first half mile was hard, and my calves were burning. Both the previous days, it was so easy. I walked the first half mile in ten minutes, and then I felt better, so I burned through the next half mile in eight. Then I felt better. Not as good as yesterday, mind you, but better. So I did a mile slowly on the bike, though not as slowly as I thought I'd have to, then walked a casual 20-minute mile afterward, though it took closer to 25 because I had to get weighed and get my IV pump fixed twice during the walk.

Things are not just smooth in the hospital. I like to make sure my walks are finished before 6am, and preferably before 5:30, because you're not walking any 8-minute half miles in the hallway during the day without knocking down nurses, equipment, patients, and maybe food carts, too!

So here I am, at 7:30 am, and my cheek doesn't burn, my tongue doesn't burn, and my stomach is a little upset, not bad at all. I had a couple blueberry muffins, and I raided the hospital refrigerator for a bottle of vanilla-flavored Ensure, which tastes great and seems very mild on the stomach. The walk totally restored my energy.

I also got several really enjoyable emails. My friend and advisor in Ireland, whom I've been emailing for at least three months, told me about Irish country football. He sent me a link to their rules, and now I'm all excited about playing at least one game of that with the kids back at Rose Creek Village when I'm better this summer.

And I'll be able to play, too. I bought a sun protection hat and sun protection sleeves that will allow me to have some ventilation in the summer heat without being affected by the UV rays, which can cause Graft-vs-Host disease (for the rest of my life!!! Aargh!!!). I'll add gloves when I find some I like. For the winter, I'm just going to use my standard winter gloves.

I really don't want to be wearing sun block all the time. I'd just as soon have athletic sun-protection clothing.

What's neat is it's the kind of thing that runners of the Badwater Ultramarathon wear. The Badwater is still the major recovery goal for me. We'll see, that's a pretty drastic goal, but I'm not giving it up yet. For right now, it's a 5K in the summer with my wife. Since I walked three miles total yesterday and biked another, I have some hope that's a highly realistic goal.

You can see the sort of outfits I'm talking about and get a feel for the ultramarathon in this little trailer.

Good day to all of you! Thank you again for the prayers. A nurse practitioner saw me this morning, saw how well I'm doing, heard I walked two miles, and suggested I give lessons for the other patients. It's not lessons and wisdom I have, it's the best support group any cancer patient could possibly have. (Although the part of that support group that is other cancer patients have given me a lot of lessons and wisdom.)

Day -2: Fatigue Setting In

noreply@blogger.com (Paul "Shammah" Pavao) — Sun, 15 Jan 2012 20:55:00 +0000

Well, I've had my last dose of chemotherapy, hopefully for the rest of my life.

Today is not the same as yesterday. I worked on a Through the Bible in a Year blog this morning, and it about knocked me out while I was sitting up.

Not that I can complain. I laid down for 45 minutes or so. I couldn't sleep because they were giving me Lasix again to keep the chemo from pooling in my bladder and causing bleeding. That means a trip to the bathroom every 15 minutes. The rest felt good, though, so I got up and walked a mile in the hallway, which was no problem.

So my brain may be getting exhausted, but my body is apparently doing just fine. I had already done two miles walking early this morning, plus a mile on the bike. The nurse checked my pulse right after I walked the mile, and it was only 80. So, like I said, I have nothing to complain about. My body's doing great. I just can't continue the work schedule I've been trying to push on myself the last couple days.

The funniest side effect I'm having is the hiccups. They come regularly, pretty much every time I eat or drink anything and at other random times. They don't last long, less than 5 minutes each time, but they're pretty strong. One nurse told me that hiccups are very common with these chemotherapies, and some patients need treatment to make them go away.

So apparently all the things I'm doing to combat mouth sores are working so far. I do have a bit of a stomach ache, which is also related to the mucositis, I'm sure. They're giving me Zofran for that. They keep promising me Tums, but it just hasn't come.

For the mouth sores, I'm doing all the things they say. Keep your mouth clean and rinse with baking soda and salt regularly. But Biotene also makes this great dry mouth gel. It noticeably helps. I'm being careful what I eat, just very gentle foods, and I've got throat lozenges with pectin, which I think is supposed to soothe and coat the lining of the throat. None of that reaches the stomach, of course.

Fortunately, I'm not doing this alone. I have advice from people who have gone ahead of me. I got an email from a man in South Africa with Blastic Plasmacytoid Dendritic Cell Neoplasm, and he said he started taking L-Glutamin and quit getting mouth sores. His doctors were okay with it, and I told my nurses about it. No one's stopped me. Hopefully that's helping, too. I don't know anything about it, nor even how much I need to be taking. It is an amino acid, one of the most common in the body, so it shouldn't be dangerous, and I was careful to ask for a trusted manufacturer. Many manufacturers of herbs and supplements don't label their products correctly. Or rather, it would be better to say that they don't bother to put into their capsules what they say are in them. It's possible to buy a bottle of herbs that doesn't have one grain of the herb you want in it. Let the buyer beware!

Anyway, that's my news for today. I thought I'd get you caught up. I'm doing remarkably well. Jerry came to visit me, and he's doing great, too. It's such an answer to prayer, and I'm so grateful!

So while y'all are doing all this good, the fellow in South Africa is named Richard. Pray for him, too. His transplant is due in February sometime.

Mine is day after tomorrow!

Day -3: Early Start

noreply@blogger.com (Paul "Shammah" Pavao) — Sat, 14 Jan 2012 11:52:00 +0000

It's 5:30 am. I've been up for nearly two hours. I've walked two miles, looping the hallway on the 11th floor, north tower, of the Vanderbilt University Medical Center, 26 laps to a mile. Nonetheless, I got the through the first mile in 16 minutes, did the exercise bike's mile in 3:30, then finished out the last mile, with a couple stops for water and a throat lozenge, in 23 minutes as a cooldown.

The nurses say I looked tan (from the x-ray radiation), and the shirt makes it look like I'm on a Carribean vacation.

So now it's time to blog, though it's the Through the Bible in a Year blog posts I need to get to. I have a friend coming for most of the day, so I won't be able to work on it later today, and I'm only one day into next week. I really want to be ahead. My left thumb already shakes when I hold things, and I've only had one day of chemo and no Cytoxan yet. Who knows how much I'll be able to blog next week.

Cytoxan and the Lasix Experience

The Cytoxan must be a doozie. The one thing they've worried about is making sure it doesn't pool in the bladder and cause uninary tract bleeding. Apparently, that bleeding can be pretty bad, and the chemo will be rapidly taking away my ability to clot.

The remedy? Put 225 ml/hour of fluid, or about a quart every 4 hours, directly into my blood stream before they give it to me. Make sure they have me running to the bathroom regularly, then give me the Cytoxan, and then give me Lasix afterward. If my kidneys don't take care of flushing all that fluid out of my bloodstream quickly, the Lasix will force them to.

(You can read about my July experience with Lasix if you want, but beware of TMI!)

A friend told me that Lasix is a lifesaver for her, preventing terrible fluid buildup in her body. The nurse explained that it can be really important for heart patients, too. For me, it's a real unpleasant experience.

On the other hand, urinating blood isn't a very pleasant experience, either. I think I'll just happily endure the "Lasix experience."

On TMI

A very dear friend wrote me and suggested that one of my previous posts was almost TMI (Too Much Information).

For those of you that find it to be TMI, just remember that this blog gets found by searches for "blastic plasmayctoid dendritic cell neoplasm," "bpdcn," "leukemia treatment," "bone marrow transplant," and similar search terms several times a day. A number of people who read this blog regularly are going through the very same thing I'm going through or worse.

I really expect that some of what I write on here is TMI for friends and relatives, except where they're just enjoying laughing at me (which I'm happy for), but I'm also pretty sure it's not TMI for any fellow patients, who have thought and felt all those things.

An extended hospital stay will do a number on your sense of modesty.

And that may be good. Any lady that's been through childbirth knows that there's some modesty you're just going to have to give up. Even if you manage to have a birth with only females present, you're still in for an rather messy experience, significant nudity, and a belly that instantly becomes a flattened basketball.

In return you get your greatest joy and biggest problem, both at the same time.

It's all designed by God.

Okay, off to the other blog. Good day to all of you!