Everything you ever wanted to know about apheresis

In apheresis, you are hooked up to a machine that processes your blood, extracts the part they need, and then gives your blood back to you. It doesn't hurt a bit. I have a catheter that hooks into my jugular vein. The catheter has three lines coming out of my chest: one for "in", one for "out", and one for "misc." They attach the "in" and "out" lines to the machine and the machine does the rest.

The machine reminds me of an old Star Trek-like computer with knobs twisting and clear plastic tubing everywhere. All the tubing is brand new, installed from a sterile "kit" by the nurse for each patient. (It would be unimaginable that they would somehow be able to clean and sterilize that tubing for multiple uses, so they don't.)

The way apheresis works is the machine pumps out a little of my blood at a time and sends it to a centrifuge under glass (under the small black 'countertop' in the photo). As the centrifuge spins, it separates my blood into layers, based on the weight of the blood components: red cells are the heaviest, then stem cells, platelets, white cells, and plasma. There's a skimmer that selects the layer they want to extract (in my case, the stem cells). They position the skimmer in the centrifuge based on the color of the product. They use what looks like a paint pallet card to recognize the right position for the skimmer (the white card above right-hand side of the 'countertop'). After they're done extracting from that blood, it leaves the centrifuge and gets merged back together and sent back to my body. After initial setup, the process is very automatic. They just let it run and run. The machine is not quite as loud as a sewing machine, with lots of clicking, and my stem cells end up filling about a fourth of an IV bag (the right-most IV bag hanging over the machine). In the course of a single four-hour session, all my blood is circulated through the machine almost five times!

They have me lying in a bed with cable TV and remote control, very good wi-fi, and a nurse at my beck and call for everything. I need to hold pretty still or I may pinch a line or cause pressure to drop. As a result, I was treated like a Persian prince. Using the bathroom? portable urinal, followed by careful hand-cleaning.

One thing the nurse had to do was feed me a lot of Tums (like 25 or so). There's some chemical they use in the apheresis process that breaks down in the presence of calcium. If they don't feed me extra calcium, the chemical uses the calcium in my body, which results in tingling in hands, feet, lips, as if they had fallen asleep. The Tums makes the tingling stop almost instantly.

Another thing the nurse had to do was make sure I stayed warm. The blood that comes back from the machine is a little cooler than the blood I sent to it. As a result, I needed a few blankets and hot packs to stay warm.

Leilani was in the room the whole time, just being there and taking care of the little things.

For autologous stem cell transplant for lymphoma, the goal is two million stem cells. Don't ask me how they count them. After the first day, they got almost half of that. Today was my second day. The nurse said that the rest of my blood counts were a little down this morning from yesterday, so she expects that I'll have to come back again tomorrow to reach (and exceed) that amount.

Here's what we did yesterday and today (so far):
Wednesday
7:30 Arrive at clinic to receive Neupogen shot. Wait an hour for it to maximize its effect. Eat something at the cafe or whatever.
8:30 Go to the apheresis room, draw blood for labwork, and get hooked up to the machine.
12:00 Lunch while on the machine
1:00 Wrap up. I'm tired, though I haven't done anything.
4:00 Get phone call with collection results. Did they get enough? If not, come back tonight for a Mozabil shot.
9:00 p.m. Arrive at the hospital for the Mozabil shot.
9:30 p.m. Receive the shot. Wait around an hour to make sure you don't react poorly to it.
10:30 p.m. Go home from receiving the shot.

Thursday

7:30 Neupogen shot.

8:30 Apheresis room, draw blood for labwork, and get hooked up to the machine.

12:00 Lunch while on the machine

1:00 Wrap up.

Four days of shots but not stem cells. Plus, radiation news.

[Caution: this is a long and rambling post because there is lots of stuff going on in my life, body and soul.]

I've learned to give myself shots in my abdomen. It's a daily injection of filgrastim (Neupogen) for the next few days to stimulate my bones to increase stem cell production. After four days of shots, the lab reported that I have great white blood cells, but the stem cell level is "undetectable."

Turns out a low (even undetectable) stem cell count is normal for people who have had lots of chemotherapy like I have had. The doctors anticipated this, so I'll go to the hospital tonight at 9:30 p.m. (!) to get another drug called Mozabil. Mozabil is supposed to make the stem cells "slippery," whatever that means. The appointment is at 9:30 because of the drug's timing. They'll hook me up to the apheresis machine at 8:30 tomorrow morning and begin the stem cell collection process when the Mozabil effect is at its peak. Of course, I still have to give myself the Neupogen shots.

Prayer point: I pray that they'll collect enough over the next two or three days to make the stem cell transplant viable. If not, it's on to Plan C. Stay tuned. God is faithful (1 Corinthians 10:13).

It seems that, to everyone I talk to, is the idea that getting these new stem cells into my system is what will cure me of lymphoma. That's not it at all. As one doctor put it, it's really "a high dose of chemotherapy, followed by a stem cell rescue." That is, the stem cell transplant (called "autologous" because I'm having my own stem cells transplanted back to myself) is done to save my life after the high dose chemotherapy wipes out the lymphoma and takes my whole immune system with it. They'll give me back my stem cells in order to restart my immune system so I won't die from catching a cold.

We met the radiation oncologist and learned a new twist in my treatment plan. I'll be receiving radiation five days a week for about four weeks before they do the stem cell transplant. There's only one chemo resistant spot that needs attention, so they're going to blast it to smithereens with radiation. Because of where the spot is, that radiation will be hitting other cool things like my spinal cord, stomach, kidney, pancreas, bowel, ribs. The doctor said that they'll be careful to minimize impact on the other areas, but that I'll likely lose about a third of my kidney function in one kidney. Thankfully, God gave me two healthy kidneys, so I'll likely chug along with no noticeable difference in kidney function. (Did you know kidneys regulate blood pressure??)

Prayer point: Nine weeks of treatments in Nashville! Four for radiation, five for the next phase of the stem cell transplant. That's a lot of time away from home and away from work (though I should be able to telecommute). It'll be quite a challenge to help Leilani run the household and take care of the kids. We all have a lot of growing up to do through this.

I have a CT scan scheduled for tomorrow afternoon so the radiation team can put together the treatment plan. I don't yet know when that will start. Maybe Monday? Stay tuned.

Prayer point: It may eventually come to the point in the next few years where I need stem cells from someone else. Would you consider becoming a stem cell donor? It's an easy way to literally save someone's life. Check out http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Steps_of_Donation/index.html.

And now a word from our sponsor:

Psalm 139
A Psalm of David
 1 O LORD, You have searched me and known me.

 2 You know my sitting down and my rising up;
    You understand my thought afar off.

 3 You comprehend my path and my lying down,
    And are acquainted with all my ways.
 4 For there is not a word on my tongue,
    But behold, O LORD, You know it altogether.

 5 You have hedged me behind and before,
    And laid Your hand upon me.
 6 Such knowledge is too wonderful for me;
    It is high, I cannot attain it.

 7 Where can I go from Your Spirit?
    Or where can I flee from Your presence?
 8 If I ascend into heaven, You are there;
    If I make my bed in hell, behold, You are there.
 9 If I take the wings of the morning,
    And dwell in the uttermost parts of the sea,
 10 Even there Your hand shall lead me,
      And Your right hand shall hold me.

 11 If I say, “Surely the darkness shall fall on me,”
      Even the night shall be light about me;
 12 Indeed, the darkness shall not hide from You,
      But the night shines as the day;
      The darkness and the light are both alike to You.

 13 For You formed my inward parts;
      You covered me in my mother’s womb.
 14 I will praise You, for I am fearfully and wonderfully made;
      Marvelous are Your works,
      And that my soul knows very well.

 15 My frame was not hidden from You,
      When I was made in secret,
      And skillfully wrought in the lowest parts of the earth.
 16 Your eyes saw my substance, being yet unformed.
      And in Your book they all were written,
      The days fashioned for me,
      When as yet there were none of them.

 17 How precious also are Your thoughts to me, O God!
      How great is the sum of them!
 18 If I should count them, they would be more in number than the sand;
      When I awake, I am still with You.

 19 Oh, that You would slay the wicked, O God!
      Depart from me, therefore, you bloodthirsty men.
 20 For they speak against You wickedly;
      Your enemies take Your name in vain.
 21 Do I not hate them, O LORD, who hate You?
      And do I not loathe those who rise up against You?
 22 I hate them with perfect hatred;
      I count them my enemies.

 23 Search me, O God, and know my heart;
      Try me, and know my anxieties;
 24 And see if there is any wicked way in me,
      And lead me in the way everlasting.

My reflections
vv1-4 David's psalm is also my psalm. I feel like this journey has been part of God's searching of my soul.
The good news is, God is intimately familiar with what I'm going through, and the things that cause that sinking feeling, even before they happen.

vv5-12 And through it all, God is here! I'm guided and protected by my maker.
I cannot escape His care. I can't somehow accidentally leave Him behind. Neither my highest highs (when I feel invincible) nor living through my worst nightmares don't separate me from Him. He leads me. He holds me. He holds me! [Oh, that I would be filled with this truth!]

vv13-16 My body was specially designed by God, lymphoma and all. And it's all for His glory (John 9:3). [BTW, "the lowest parts of the earth" (v15) is a metaphor for the womb (v. 13), which, in David's day, was a dark, mysterious, unreachable place.]
God has personally crafted my days for me, even before I was born.

It's great to know that God is with me, thinking about me with innumerable thoughts. I can sleep soundly, knowing that when I wake up, God's presence is not merely a dream. We (He and I) really are going through this thing together.

[vv19-22: It's easy, when you're zealous for God, to resent those who hate Him. Despite David's sentiment, God has proven that His patient love gives even His enemies hope, if they will but submit to Him (2Peter 3:9).]

v23: As for me, I lay myself open and vulnerable to God. I invite His purifying gaze into my life to root out my wickedness, and I crave and submit to His leadership for my life.

Dear reader, if you've stuck it out this far, my prayer for you is that of Hebrews 13:20-21:
Now may the God of peace who brought up our Lord Jesus from the dead, that great Shepherd of the sheep, ...make you complete in every good work to do His will, working in you what is well pleasing in His sight, through Jesus Christ, to whom be glory forever and ever. Amen.

[And now off to my 9:30pm appointment.]

Beginning the journey through Radical

My Sunday School group is going through the book Radical by David Platt. (Check out an ad for the book at http://www.radicalthebook.com.)

We had a terrific discussion in today's session. How far does Jesus really want us to go? Should we sell our homes and move into mud huts? (Maybe.) Should we stop going to Disney World for vacation? (Maybe.) Should we stop hoping and expecting for things to turn out OK in this life? (Maybe.)

We're just starting this journey together. I believe all of us are willing to follow Jesus even to the end of the earth, if that's where He wants us to go. The issue for us right now is for us to discover where the Lord would have us to go, and be willing to say "Yes". Consider Luke 14:25-33.

Great multitudes went with Him. And He turned and said to them, “If anyone comes to Me and does not hate his father and mother, wife and children, brothers and sisters, yes, and his own life also, he cannot be My disciple. And whoever does not bear his cross and come after Me cannot be My disciple. ... So likewise, whoever of you does not forsake all that he has cannot be My disciple.

This is unfamiliar territory for most of us. And it sounds kind of scary. Could Jesus really mean that I need to give up everything to follow Him?

No guilt trips allowed! As we consider what it means to live a life of radical obedience, I encourage you not to beat yourself up over where you are today, decisions you've made, or the things you hope to achieve or obtain. Instead, express to your Lord your willingness to follow as He leads. We all desire to trust and obey our Lord to the best of our ability. Jesus calls and saves us where we are and then, as we follow him, we are shaped and changed.

At this point in our journey, we're just getting ready to get radical. I think it's reasonable for us to take inventory and create a (figurative) pile of all our belongings, our family, our friends, even our own lives, and say, "Lord, these people and things are all yours, not mine. Teach me to do with them what you would have me to do."

Some practical points you might consider guardrails on the journey (all open for discussion!):

• Jesus didn't come into the world to condemn us, but to redeem us (Joh 3:17-18).
• We are after more than sentiment. You need to bring forth fruits consistent with repentance (Luke 3:8, James 2:18). Egyptian civilians recently rallied, risking their lives to make their world a better place. Are we ready to put it all on the line to follow Jesus?
• If you are parents of young children, then you have a responsibility to raise those children (Prov 22:6; Eph. 6:4). (Of course, that doesn't stop you from taking your family to the mission field...)
• It's OK to enjoy the fruit of your labor on this earth, but you should live with intentionality (1Tim 6:17-19; Mt 11:19). If you've been abundantly blessed, then it's almost natural for you to abundantly give (Mt 10:8b), to "pay it forward" for the glory of the Lord and the good of the world.

Next week, on to chapter two.

The parable of the 10 virgins (Matthew 25:1-13)

We want everything that has to do with this life and our eternal destiny to have a happy ending. In Matthew 24-25, Jesus is describing the end of the world to his disciples in response to their question: "What will be the sign of Your coming and of the end of the age?" (Mt. 24:3) He describes signs leading up to His return (war, earthquake, false religion, abounding lawlessness, business as usual), and the scene of His arrival "coming on the clouds of heaven with power and great glory." Jesus said that just as no one knew when Noah's flood would occur, there will be no warning before His return, and that we are simply to be ready (v. 44).

Then Jesus tells the parable of the ten virgins in Matthew 25:1-13. It doesn't have a happy ending. The bridegroom was delayed, so the five unprepared bridesmaids end up locked out and completely miss the wedding! The groom shouts through the door, "Sorry, I don't know you!" What's going on here? Let's think about it.

Weddings, New Testament-Style

(From Chuck Swindoll, Clearing the High Hurdle of Unpreparedness)

• The groom is central, not the bride.
• The groom's family, possibly even the groom himself, pays for the wedding.
• The marriage process is in 4 stages:
1. Engagement - as children, arranged by the parents
2. Betrothal - at 12-18 yrs old.
• legal and binding
• unfaithfulness during this phase = adultery
• death during this phase = widowhood
• lasts about 12 mo's.
• a permanent, firm, arrangement
3. Ceremony - the groom takes the bride
• marriage is at his or his father's house
• the virgins are bridesmaids / the bride's friends
• The groom came whenever he wanted to. The people never knew the day nor the hour.
  When the door is closed, no one is permitted entry.
4. Honeymoon - a 7-10 day feast w/ riddles, games

Questions to consider:

• Why ten virgins? Why not just two: one wise and one foolish? Ans: This is a big wedding feast. Also, it's easier for a listener to think of herself/himself as one of ten rather than one of two.
• Were they ten separate virgins located in different places, or were they in two groups? Ans: They were all individuals. I've found that God doesn't count by groups, but by ones.
• Why didn't the wise virgins invite the foolish to go with them in the light of their own lamps? Ans: That may be like a modern bridesmaid attempting to participate in the wedding without the matching dress or bouquet.
• Why didn't the foolish try to make their way to the wedding without lamps? Ans: That'd be like a modern bridesmaid traveling by air and making it to the wedding, but her luggage didn't make it.
• Why is it wise to have extra oil? Ans: Because you don't know when the groom's return will occur.
• So, which is better, being late to the wedding because you're take care of last-minute preparations, or being on time for the wedding but unprepared?
• What disqualified the 5 virgins from participating in the wedding?
  • Not denying the groom.
  • Not forgetting lamps (they had lamps).
  • Not going to sleep (else the other virgins would've been disqualified, too). As you await the coming of the Lord, it's OK to sleep. We're not in some frenzy, waiting.
  • They failed to be ready for an indefinite delay.
• This parable is speaking of the kingdom of heaven and about being ready for the return of the Lord Jesus Christ. What does it mean to be personally ready for His return?
• Saved (this is enough to get to heaven, but the Lord also wants us fruitful, John 15:16)
• Anticipating His return at any time (see 2P 3:14)
• Being a good steward (see Mt 24:45-46ff)

The coming of the Lord is 2000 years nearer than it has ever been. And, in a sense, even if the Lord's return is another thousand years away, our own personal journey of life will end with the coming of the Lord. Are you ready? Acknowledge Jesus Christ as Savior and Master. Prepare for His return.

My stem cell pre-test days

I'm getting ready to undergo an autologous stem cell transplant (the kind of transplant where the patient donates his own cells for later implantation). I had several appointments over the course of two days at Vanderbilt in order to figure out how my lymphoma is responding to the preparatory chemotherapy, to determine if I am healthy enough to have a stem cell transplant, and to establish baselines.

I was very grateful to have my precious wife with me throughout. She's a trooper. She schlepped all the papers and took notes and made sure we got home safely.

On day 1 (Thursday), my first appointment was at 9:30, so we ate breakfast and left home by 6:40. (Nothing else to eat until after the bone marrow biopsy.) With a detour for construction, we got there just in time for the 9:30 appointment. This appointment was with an insurance specialist who had done the research and knows that BC/BS will pay for the treatment with some copays and deductible, but won't pay for lodging during the 40-day treatment time. Vanderbilt has free lodging if we can get in, so maybe the lodging won't be a problem, either.

Our second appointment was with the social worker, who asked questions about the family, and whether I was ever depressed. She wanted to be sure I had a caregiver and a backup caregiver. She gave us a DVD that describes the stem cell process from a logistics perspective. We signed up Leilani as the primary caregiver, but we still need to find backup caregivers.

Backup caregiver job description: provide relief to the main caregiver for two days in a row so she can get rest and take care of things at home, or in case she gets sick. Live in the apartment with me and provide company, transportation to/from the hospital and accompany me to all my appointments; monitor for signs of fever and call/transport to hospital; take care of all needs in the apartment (meals, cleaning). (Apartment is furnished with kitchen, TV, wifi.) I should be able to dress and bathe myself, and I probably won't be throwing up thanks to powerful anti-nausea drugs. You can bring a laptop and do work while you wait with/for me at the hospital, but wifi and 3G are limited.

Next was a CXR - chest x-ray. Quick and painless.

Last appointment for the day was a bone marrow biopsy (BMBX). I was hungry all day because of this appointment (because of the sedation). They do BMBX differently at Vandy than they did at Huntsville. They only use "moderate sedation," meaning a smaller dose of Versed. Perhaps if they had waited a little longer for the Versed to take effect it might've gone better. I didn't feel a thing as I lay on my stomach and they prepped and numbed the top of my hip. But I groaned aloud as they actually extracted bone marrow three times, each time the nurse saying "I'm sorry." The pain lasted only for the second or two that they were actually extracting the marrow. Then I fell asleep. About 30 minutes later, they plopped me into a wheelchair, gave me extra-strength Tylenol, and handed me over to Leilani, who wheeled me to the door. I was able to walk with her the rest of the way to the car n the parking garage.

We had pricelined a Hampton Inn just a couple miles from the hospital. Usually $180/night, we got it for $50. (After taxes and mandatory parking fee, it was more like $90.) Thank you to our generous friends who gave us money to pay for such things. We strolled in the cold and slight drizzle to the nearby Joe's Crab Shack (the sedation had worn off so I was sore but practically normal). Since I had a PET scan the next day, I had to have low-carb food, so I ate a Cobb salad without avocado and with snow crab legs. It was good, but Leilani's crab nachos looked and smelled better. To our friends, thanks again!

Day 2 (Friday)

[Turned on the TV and saw the Japanese earthquake news. Oh God, have mercy!]

Breakfast (no carbs!) at the glorious free breakfast buffet at Hampton. I had to pass up everything but the eggs and sausage. No waffle. No yogurt. No juice. At least Leilani got to enjoy the treat. Nothing else for me to eat or drink until after the PET scan.

First appointment at 9:30 was pulmonary function test (PFT). (Leilani dropped me off so she could drive over and check out the Hospitality House lodging.) Some of the chemo drugs they use in stem cell transplant could have lung toxicities, so they needed to get this baseline. I sat in a chair with a clip on my nose and breathed through my mouth into this snorkel-like mouthpiece attached to a machine that measured my air capacity and chemistry.They had me to inhale as deeply as I could, and exhale as deeply as I could. That was remarkably hard work!

Next was labs. The nurse put in an IV and drew about 20 vials of blood.

Next appointment was with the stem cell nurse practitioner, Katie. She asked all the background questions and provided us with a draft calendar of events. Assuming that the PET scan I have this afternoon shows good progress, we start the stem cell process on 3/23 and go until about 5/11.

The stem cell process. The first week, they give me drugs to put my bones into overdrive and produce more stem cells. Then they harvest those stem cells from my blood through apheresis and freeze them for later. A few days later, they give me high-dose chemo for four days straight, then they let me rest a day and then they inject my stem cells back in. For the first two weeks, my blood will be weak-no white cells, low platelets, low everything. But then the stem cells will just automatically know where to go and they'll "engraft" and restart my immune system. I'll probably need blood transfusions during this time.

We then met Dr. Jagasia, one of Vandy's six stem cell transplant doctors. He said we're looking at about a 40% chance of cure through this process, depending on what today's PET scan shows. Chances are  better if the PET scan shows little or no activity. Honestly, I don't like those odds, but this treatment is my best option.

Next was an echo cardiogram. It's an ultrasound of the heart that took about 30 minutes. He imaged each of my heart's valves and measured my heart's ejection fraction, a measure of the heart's ability to squeeze.

Last was the all-important PET scan. After injecting radioactive sugar, I rested in a recliner for about an hour. Then they scanned me in the machine, looking for where I might be glowing. That got done at 5:00.

Leilani drove us to the nearest Cracker Barrel on our way home. Thanks again to our generous friends!

We got home at about 8:30 Friday night.