Day 49-50: Change

Today was supposed to be a day off. So far, since I've gotten out of the hospital, we've managed to maintain a Monday-Wednesday-Friday schedule at the Stem Cell Transplant Clinic. I go in, they check all my blood counts, and then they give me various infusions, depending on what I need.

Several things, however, have come up ... well, two mostly.

The first issue was a rash that seemed to sprout immediately over my back and chest Friday. It then spread to my arms and legs over the weekend.

On Friday, they gave me a steroid cream that has been treating the rash quite effectively.

On Monday (yesterday), when we went back in for our scheduled appointment. The doctor talked to me very briefly about the rash, and then told us about a treatment called Photopheresis.

He didn't stay very long, and it seemed clear to me he'd already talked about my case. There are a team of doctors that handle the transplant patients. One in particular might be assigned to each patient, but the whole team talks about each patient's issues. Photopheresis was something that was already on the doctor's mind. He told us he was thinking about it, and he'd get back to us. Then he left, and we could hear him go directly to the phone to continue talking about it.

We went home, expecting to hear more on Wednesday morning because we haven't been going in on Tuesdays.

They called us in this morning, however, to tell us that my "CMV"e; count is over 2,000. CMV is a virus that about 70% of us have, but it causes no problems unless your immune system becomes compromised. At that point, the CMV can cause some nasty problems, including pneumonia, and is a potential killer. When it jumps over 1,000, then it's time to get some help.

They have several treatments for it, all very successful. For me, they opted for a medicine called Foscarnate. I have to get an infusion of it twice a day for a week before they can back it off to once per day and re-evaluate.

That means today is not off ... not at all. It starts with a 9:30 am trip to the hospital for the first dose and a 9 pm trip for the second dose ...

Jump to the next day. It's now Day 50, The halfway point to the 100-day post transplant treatment. Normally, 100-days means that we can go all the way back home to wherever we're from, and we simply show back up in Nashville every 6 weeks or 3 months for checkups.

Clearly, though, it doesn't always work that way. Jerry picked up pneumonia or a respiratory virus of some sort. He's on day 98, I believe, and he's in the hospital having his lungs treated.

It's good to stay well, so I'm sticking to what they tell me to do.

Day 50

I went in this morning, day 50, a Wednesday, after getting those first two Foscarnate dosages yesterday. I couldn't believe how tired I was, and I went right to sleep while they set up the Foscarnate dosages.

By this morning I'd also found out that the Photopheresis is approved.

Step one for Photopheresis would be removing my PICC line, with its three very narrow ports in my arm and replacing it with another Hickman Catheter, a line in my chest and neck with much larger ports to access my bloodstream. They scheduled the installation of the Hickman at noon today, which is very minor surgery, but minor surgery nonetheless.

The PICC line can have three lumens, but the vein in the arm is smaller, so each lumen is connected to  smaller line than on the hickman:

Here's the Hickman. It attaches to large veins in the neck and chest, so all three lines deliver blood better than the PICC line.

Photopheresis

Photopheresis begins tomorrow. It's done on a dialysis machine. They hook the machine up to one of the "lumens" on my Hickman Catheter and pull blood out.

Somehow, the machine divides the blood into three sections, and the section with the white blood cells, along with some medicine, is run through ultraviolet light (UV radiation, like from the son). The UV radiation kills the T-cells, which are apparently the cells that cause Graft-vs.-Disease. They then return the whole mass of blood to my body through one of the other lumens.

How many times they have to do this for each treatment is based on my size and some other factors.

Like all of these treatments, it can cause side effects. The medicine they put in the white blood cell portion to help make the UV radiation work right apparently stays in the blood. So after each treatment, for 24 hours, I have to wear wraparound glasses keeping all UV light away from my eyes.

Like I said, this treatment will happen twice a week and last about 4 hours each, along with the twice a day infusions of foscarnate and whatever other things I might need to be given, like magnesium, phosphorus, Neupogen, my daily dose of Micofungen, and any platelets or blood I might be needed.

It will be a very busy next few weeks.

I'll keep you updated.

To My Friends

Tamara and Richard, great strength to you as you head down your very similar paths.

I may be repeating this, but I recently read that if God gives you a tough road, he'll give you big boots to walk it with. That means a lot to me since it was Corrie Ten Boom who said it, and her rough road included a Nazi concentration camp.

We're going to make it, grace will be sufficient, and we can go through this with cheer and with friendship with those health care workers that are pouring out all their effort on us. We can win!

Day 43: Out of the Hospital and Home

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

Fortunately, my wife's been making notes.

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

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

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

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

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

Getting Used to the Clinic

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

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

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

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

Nope.

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

Sure, no problem.

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

No, there'd been no time for that.

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

No problem, I told her.

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

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

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

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

We opted for the one hour.

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

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

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

It's worth it to be alive.

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

This Week

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

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

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

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

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

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

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

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

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

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

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

They came in and told me.

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

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

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

Today

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

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

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

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

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

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

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

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.

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!