Wednesday, February 29, 2012

Day 43: Out of the Hospital and Home

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

Fortunately, my wife's been making notes.

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

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

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

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

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

Getting Used to the Clinic

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

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

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

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


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.


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.

Sunday, February 19, 2012

Day 33: Building Up

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.

Tuesday, February 14, 2012

Day 28: Falling Apart at Mid-Day

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!

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!

Sunday, February 12, 2012

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

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.

Friday, February 10, 2012

Day 24: Everything's THE SAME!

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.

Wednesday, February 8, 2012

Day 22: Count Your Many Blessings

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.

Monday, February 6, 2012

Day 20: Going Forward

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!

Thursday, February 2, 2012

Day 16: Going Forward

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.