Wednesday, May 30, 2012

Video to Share

I wrote a blog about an hour ago. Don't forget to scroll down and read that if you want to hear updated news now that I'm back home.

I just found this (my thanks to for sharing it). I'm not in touch with pop music, so I'd never heard the Kelly Clarkson song that they used to make this music video. Let me give you Discovery's introduction to it:

What's stronger than a pop star singing about how she can overcome bad interpersonal relationships? Some strong children at the Seattle Children's Hospital singing about how they can overcome their relationship with what ails them.

Testing Out Life at Home

I have some pictures today, but unfortunately none of what would have been the best picture of all: me rolling and sprawling as I tried to run down the first base line in a softball game with friends.

It's not like I didn't know I can't run fast. I can jog a little. I could jog all the way around the bases at a 13 or 14 minute per mile pace (that's very slow). I only intended to jog. After all, this was just fooling around with friends.

We've got stuff leaning against the house because we're still moving in, but the hydrangea bushes and the Tennessee spring are beautiful.

But as soon as I hit the ball, my subconscious took over. After hundreds and hundreds of baseball and softball games throughout my life, my body didn't need any input from my conscious mind. It knew just what to do, leaned toward first base, and started pumping my legs.

Or tried to.

I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.

I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all.

Worse, I can only imagine how I looked in my highly unusual softball garb. The blue jeans were no problem, but I bought several UV-protective long sleeve shirts from Duluth Trading Company. I wear them because they're made to be cool even in summer. Excellent shirts, but they're still somewhat new, and they look like dress shirts. Then, when I'm outside, I wear a hat with hanging sides that can wrap around my face and velcro closed. Basically, only my hands are exposed to the sun, and I put SPF 50 sunblock on them.

So I look a bit like a desert nomad dressing up for a casual dinner party when I'm outside wearing the hat. I will get you a picture of that.

The Fun Part of Life at Home

There's some fun things happening today.

My daughter just finished conducting a "Dr. Seuss party" for some of the children in Rose Creek Village. She loves Dr. Seuss books, so she brought children over, made them some drinks, and read Dr. Seuss books to them under the willow tree in the back yard.

Janelle, the reader

The children and the books under the willow tree

Sam wants in on the party!

In the meantime, my son Manuha was experimenting--literally--with a box of old chemistry supplies that was given to him.

My wife took that picture. Unfortunately, when I tried to take a picture, this is what happened ...

I couldn't get my hands to stop shaking. I'm not sure which medication makes my hands shake, but I was doing pretty good for about 3 weeks. The last week or so, though, I'm  back to shaking badly enough have difficulty writing. Good thing I'm usually typing!

The shaky hands don't bother me. Those will go away as I wean off medicine. I understand Tacrolimus, one of the immunosuppressives, can commonly cause tremors, and I won't be off that until at least October, and only if the taper off of Cellcept goes will first. We'll see.

Have a good day, y'all!

Wednesday, May 23, 2012

Are You Listening?

A directly theological post is out of the ordinary for this blog, but surely many leukemia and cancer patients, whether they're Christian or just have Christian friends, have repeatedly run into the issue I'm going to address. I saw an article today from David Wilkerson, a great man of God and author of The Cross and the Switchblade, and it said something that made me think, "Okay, today is the day to write this post."

David Wilkerson is a great man of God who risked his life to bring the Gospel to inner city gangs in New York in the 1960's. He founded Teen Challenge, perhaps the most successful rehab ministry for drug addicts that there ever was. He started Times Square Church, which still attracts thousands of people each week.

But I think he got off track with his emphasis on prophecy and the judgment of the US over the last twenty to thirty years of his life. Even his book, The Prophecy, which was trumpeted by Christians as an amazing prediction of the US attack on Kuwait, wasn't really. I read the book. The places where it matched Kuwait were pretty general, and a lot of details didn't match at all.

Anyway, the article I saw today, which obviously wasn't written today since he went to be with the Lord last year, said ...

... the Bible clearly outlines what the church of Jesus
Christ will be like just prior to His coming. (World Challenge)

No, it doesn't. At least not clearly.

The first time Jesus came, no one—not one single person, righteous or unrighteous—was able to accurately predict what the coming of the Messiah would be like. End time prophecies are not meant to be figured out in advance. They are to give us hope and help us see what is happening as the events unfold.

That is why some Christians say the church will be in great apostasy when Jesus returns, and others, like David Wilkerson, say that the church will have more power than the apostolic churches of the first and second centuries. The Bible's not clear on that subject, and it won't be until the events actually transpire, just as was true during Jesus' first coming.

What does this have to do with leukemia and cancer patients?

A friend wrote on Facebook about "standing on the Word of God" concerning a prayer for healing for someone. What that meant, however, is that they were standing on one minority interpretation of the Bible, believing that God always wants to heal the sick or injured.

There's some biblical problems with that interpretation that at least make it doubtful. More importantly, though, it's obviously not true in real life. It doesn't work. No faith healers are going through hospitals healing everyone and reducing health care costs in the US by billions of dollars. They're not even healing many and reducing health care costs by millions of dollars.

God has not promised to heal everyone. Even the apostle Paul "left Trophimus in Miletus sick" (2 Tim. 4:20).

The Word of God I'd like to see my friend stand on is the one that comes daily to us who walk by the Spirit of God and by which we live (Matt. 4:4). Standing on that Word does produce miracles.

Many years ago my 2-year-old nephew got an eye infection that took all the sight from one of his eyes and was slowly taking sight from the other. I was in Germany at the time because I was in the Air Force, and I got a letter from my sister about the problem, which had been progressing for about a year and a half. The doctors didn't know what it was or what to do about it, and she was writing to ask us to pray.

I got together with two friends, and we prayed, and the presence of God fell on us. As we prayed, that burden I had for my nephew slowly lifted until I was filled with joy, and I knew that God had heard our prayer.

Despite that, I told my friends after praying that I just couldn't shake all the burden. It was like there was just a little bit left, and I couldn't get complete peace. It was sort of an odd feeling that I hadn't experienced before.

Two weeks later I got another letter from my sister. Mail to Germany took a week, so she had mailed it a week after we prayed. All my nephew's vision was restored. The infection had backed way off, and there was just a little bit left in one eye, but the doctors thought they could deal with that (and they did).

I've been told that God always answers prayer and that sometimes the answer is no. That's true, but we ought not to have to wait in order to know the answer is no. We ought to know that the burden didn't lift, or we ought to have been directed to pray something different. We should be aware that we have not successfully gotten God to change the situation we're praying about.

Sometimes that happens because of a lack of faith. Or it can happen because God wants more effort from us in prayer, and we need to continue praying. It is, after all, the effective fervent prayer of a righteous man that can accomplish much (Jam. 5:16). Maybe we need to fast. Or maybe we need to listen and hear God say, "I'm taking this saint home. Don't try to stop him. Pray for peace for his family."

I went through this last year confident that I wasn't going to die, but it wasn't because I interpreted the Bible to mean that anyone with faith can be healed because "by his stripes we are healed" (Is. 53:5). It was because I believed God had told me and others that I wasn't going to die from this leukemia.

I will die someday. Perhaps it will be in my sleep from old age, and perhaps it will be from some disease or accident. Either way, I don't expect to be pleading and begging God for healing. I expect to know, and that my friends will know, that it is time for me to move on to a life that is immortal and painless, assuming I keep the faith to the end.

I believe in miracles. I also believe that in most cases, we should know whether a miracle is coming.

We should labor in prayer. While there's no time in a day to labor in prayer over everything that we might want to pray about, there are issues we should labor in prayer about until we receive the Word of God. From the Word of God we can gain comfort in advance of the healing, knowing it will come—because we have the real Word of God, not just a Bible interpretation based on our own opinion—or we can gain comfort knowing that God has a different plan, painful as that plan might be.

I don't know why things are the way they are. I simply pay attention to what works. Like most other theological issues, nothing I said in this post is without exception. Sometimes a quick, perfunctory prayer produces amazing results.

What I want to deliver us from is "standing on the Word of God" only to have nothing supernatural happen 19 times out of 20 (and I'm being generous here). What most people mean when they say that is that they are "standing on a Bible interpretation I was taught." God is not interested in backing up that kind of faith when he has called us to live by every word that is currently proceeding from the mouth of God (Matt. 4:4).

Jesus' most strenuous opponents were the Pharisees. To them he said ...

You search the Scriptures because you think you have life in them, but they testify of me. Yet you refuse to come to me so that you might have life. (Jn. 5:39-40)

Christians have to be those who live in the New Covenant, the basis of which is a real and spiritual relationship with God ...

Now we are delivered from the Law, having died to what we were held by, so that we should serve in the newness of spirit and not in the oldness of letter. (Rom. 7:6)

... for the letter kills, but the Spirit gives life. (2 Cor. 3:6)

Monday, May 21, 2012

Yippee Revisited: The Pros and Cons of Leukemia

On June 25, 2011, just shy of 11 months ago, I wrote a post that I titled, "Yippee! I Have Leukemia!"

Now that I'm no longer going into the biggest adventure of my life, but coming out of it, I thought it would be wise to examine whether or not I could still say, "Yippee! I Had Leukemia!"

Note: I'm really not allowed to say I'm cured until at least two or three years have passed without relapse, but I'm assuming the best here.

I'm going to quote last year's post, then comment below it.

When you're a Christian and the purpose of your body is to glorify God, then there is really no difference between a clean bill of health and a diagnosis of leukemia.

Yep. I still believe this is true, and that it was better to have leukemia, chemotherapy, a heart attack, multiple blood infections, six PICC and Hickman line insertions, radiation, a stem cell transplant, and everything else than to have had a clean bill of health over this last year.

I am sorry for the emotional trauma my journey has brought to my family, both nearby and far off. I wish that could have been avoided.

The Pros

Last year I wrote:

The Scriptures say that wisdom is the principle thing. Therefore, it says, "in all your getting, get understanding" (Prov. 4:7). Along those lines, the Psalmist prays, "Teach us to number our days, so that we may obtain a heart of wisdom" (Ps. 90:12). Leukemia is a quick way to number my days!

Without intervention, I'd have been dead by early August, within about 6 weeks of my diagnosis in June. I could have been kept alive a while with just units of blood, and received at least 20 units in July and August. I think closer to 30.

Chemotherapy was instantly and remarkably effective last summer. Nonetheless, I have had much opportunity to remember my own mortality, something that Proverbs says provides wisdom.

There's people to see and talk to that I would never be able to talk to without leukemia.

Here's where I have to make this pro more important. I seriously underestimated what a great thing this was. I proudly thought (well, hoped) that I would trust God, proclaiming that all things work together for good for the called of God, and treat my leukemia as a good thing and inspire many.

Well, I did. By the blog. In the hospital, however, I met dozens of people just like me, some of them in much worse straits than I was. Beautiful attitudes from people who didn't have nearly the support I did. Nurses with unending patience and even an exuberant joy, never panicking despite some awful, frightening situations. Doctors with delightful senses of humor. Former cancer patients or family members laboring tirelessly to help cancer patients. They not only raised funds, but paid attention to everything that cancer patients might need and provided housing, phone support lines, and even a gift for Christmas presents for my children.

I was able to give and help a lot of people. More people gave to and helped me.

It should be easier to display faith in Christ to these people because they're going to be expecting me to think something bad is happening to me.

I don't know how true this one was. I'm prone to thinking that being an example of faith in Christ is a spiritual thing that is as likely to happen on a sunny day at the park as on a dismal day at the hospital.

In general, any statements that I make that God can be trusted in every situation will carry more authority than they would if everything was going well for me.

This was sure true. I've had friends whose complaints got stuck in their throats when I said, "Yeah, I know something about that," in regard of some bit of trouble they were going through. Others have come to me saying, "What have I got to complain about?"

I love the verse that says, "Do all things without grumbling or disputing; so that you will prove yourselves to be blameless and innocent, children of God above reproach in the midst of a crooked and perverse generation, among whom you appear as lights in the world" (Php. 2:13-14, NAS Bible).

Living and dying are in the hands of our Father in heaven. Saints don't die because they have leukemia. Saints die because it's the will of God for them (Isa. 57:1-2; Ps. 116:15).

I still believe this.

I have a friend with cancer, and now I get to go through this with her ... consoling others with the consolation I've received.

Now I have several friends with cancer, and we get to go through all this together. Very awesome, very much one of the pros of having leukemia.

Those are the pros I listed last year. Now I'd like to add a couple more:

  • I found out my wife is even more of an incredible person than I already thought she was, though that would have hardly seemed possible last year.
  • I got much more secure as a person. I've been loved and taken care of when I had nothing to offer but a lot of work, some of that work pretty nauseating. I've talked with people in all sorts of situations, and I'm just not as shy or fearful as I was last year.
  • I have a clearer idea of the important things in life. I think I can say that I'm at least close to being delivered from the the American mindset of live to work, rather than working to live. Life and people are first.
  • I understand trust in God more than ever. I'm soon going to write a post called "Are You Listening" to talk about that. Faith isn't about reading a Bible verse, gritting your teeth, and announcing what you believe. Faith drops down from heaven like dew, and it works even when you're despairing, exhausted, and lacking even enough energy to pray.


Last year, I listed:

Distress on my family

This was truly one of the harder things about the last 11 months.

Being unable to exercise, run, be strong.

Overrated. In my case, this probably should be listed as a pro.

I am exercising pretty much every day and getting stronger. Consistent exercise over the last 40 years played a pretty major role, I'd say, in enabling me to do well through all the chemotherapy, radiation, and side effects. This all may not have been possible with a bad heart. I had a heart attack even with clear arteries and a strong heart!

There's a real danger of being focused on myself, loving attention, or taking over conversations by talking about leukemia.

I'm a pretty gabby person, and it's easy for me to get to talking about myself and the things I think about. This has been a real danger, and I regularly have to tell myself, "Don't say anything. Ask a question. Let this person talk about themselves."

PAIN: Pro or Con?

The one thing I didn't mention last year was PAIN. I don't know what I was thinking last year, but there's a lot of memory of pain over these last months. Keep in mind, I'm well aware that others have suffered much worse pain than me. I need to thank God, not complain.

James, the Lord Jesus' brother, said that we should consider it a joy when we suffer trouble because it will produce patience in us. If patience has its perfect work, we'll be made complete, lacking nothing.

I'm an American. I need some deliverance from comfort. I think PAIN needs to go on the pro side, not the con side, because the purpose is to appear before the throne of God and have him say, "Well done, thou good and faithful servant. Enter into the joy of your Lord."

I'm old enough to know that it will take the grace of God and help from others for me to hear that on the last day.

This last year has been both grace from God and help from others. I agree with the apostle Paul. I think that the sufferings of this present time are not worthy to be compared to the glory which will be revealed in us who have entered the grace of God by becoming disciples of Jesus Christ.

I have to admit that more pain terrifies me a bit. After 10 months with a lot of pain involved, I have no confidence that I can deal with pain except by the grace of God. On the other hand, I've now experienced the amazing grace of God through pain, through bleeding, and through setbacks and disappointments.

Long ago, during the short time that I decided I was an atheist, I watched a movie called In the Presence of Mine Enemies. It was about a US military pilot who was imprisoned in Vietnam and tortured regularly for seven years.

At the end of the seven years, he was released, along with all the other prisoners at the end of the war in 1973. As they made their way into the prison yard, blinking and guarding their eyes from the bright sun that they'd seen so little of for so long, they gathered, held hands, and fell to their knees in gratefulness for their deliverance.

I was an atheist. I was enraged. Why would they give thanks to this God, who, if he existed, had allowed them to be tortured for years? If he deserved thanks for the release now, why hadn't he released them earlier? Is there more red tape in heaven than there is in Washington?

But as I lay in bed that night, an answer began to form in my mind.

Those prisoners had not lost their faith in God through their entire imprisonment. Why not?

Because God is an ever present help in time of trouble (Psalm 46:1).

It was the only answer I could come up with. Those people had experienced enough help (which is a good synonym for grace) from God to maintain their faith and strength throughout the time of their imprisonment and torture.

That movie ended up being one of the bigger influences to turn me back towards Jesus Christ.

I wasn't tortured, but I have a very clear idea of what it means for God to be an ever present help in time of trouble.

I'm glad I had leukemia. I'm glad for going through all this. It was exciting, it was an adventure, and I met great people and got closer to my wife and family.

Sunday, May 20, 2012

Day 124: Starting the New Norm?

We drove back to Selmer 10 days ago, on Thursday, May 10. That all went amazingly well, especially considering all the bumps in the road I've managed to find.

The first week back was a little rough. I was nauseous every morning, which has not been my pattern. Due to the clot and bleeding from the week before I left, I wasn't supposed to lift anything heavy, and I had to watch others do all the work of moving without lifting a finger myself. Torture.

The last three days have been pretty great, though. The hole in my chest stopped oozing, and it's scabbed over well. On Thursday, I got a PT-INR, which measures how thin my blood is. It was a little too thin, so they reduced the Coumadin I'm taken, and I got to stop getting those painful Lovenox shots in the belly. I'll get another PT-INR tomorrow, but I can do that locally without going to Nashville.

That's my simple, quick update. It's good to be home!

Today, though, I was catching up on emails, and it seemed like I had dozens of interesting things in there. This is totally off the subject of this blog, except that these are the kinds of things I find fascinating.

  1. Swiss scientists produced a robot that is wirelessly controlled by an almost quadriplegic person from 60 miles away!
  2. Heard all the hype about December 21, 2012 and the end of the world as supposedly predicted by the Mayan calendar? Archaeologists have discovered a Mayan calendar going 7,000 years into our future.
  3. How far is science from the technology of the Avengers?
  4. You'll be thrilled to know that 60% of us can't go 10 minutes without telling a lie
  5. An amazing genetic breakthrough in chemotherapy treatment for glioblastoma, a form of brain cancer.

Ok, gotta go. It's still pretty busy around here.

Thank you, NBB, for the reminder in the comment of the last post that I need to give people an update.

Wednesday, May 9, 2012

Day 113

I finally had my long-term appointment today. What a breath of fresh air!

I can drive. Photopheresis is over. Twelve treatments is all I need. I can walk outside and in the woods without a mask (unless mowing or something like that is going on).

Friends are coming to pack us up tomorrow. Well, no, not pack us up, just load us up. My incredibly hard-working wife has gotten the whole apartment, which we've slowly moved into over the last nine months, packed up over the last week, even while driving me to appointments and staying overnight with me at the hospital.

We've home schooled three and sometimes four children here over the last school year. So packing up was no small job; just the books and home school supplies were a load.

I have a really great wife, the best and prettiest caretaker ever. That's her with our oldest two sons in the picture above.

I still have to take blood thinners for the next three months. In fact, for the next week or so, I'm on two of them. Lovenox is a shot I get in my belly morning and night. If you've not had any shots in the belly (like I hadn't until about five months ago), they don't hurt any worse than shots in the arm. Sometimes I can't feel them at all. However ...

Insulin in the belly (when I was being fed by IV in January or February) is not painful. With Lovenox, the needle isn't bad, but the injection of the Lovenox is painful for about ten minutes. What a fun thing to look forward to twice a day, especially first thing in the morning!

I also am part of a study attempting to prevent ocular (of the eye) graft-versus-host. Apparently, if you get GVHD of the eye, there is no cure. You have it for the rest of you life, they just treat it with eye drops forever. I forget what the medicine is that they're giving me ... or may not be giving me. The eye drops they gave me may be a placebo. It is a double-blind study, so even the doctor who gave me the drops doesn't get to know whether they're the medicine or the placebo.

The idea is that maybe if they give the medicine in advance, then we transplant patients won't develop ocular GVH. Apparently, about 70% of transplant patients develop ocular GVH.

The nice thing, I guess, is that the researcher told me that it's looking so far like both the placebo and the medicine help prevent ocular GVH. He's wondering whether they won't soon be telling all of us to use an over the counter eye drop to prevent GVH of the eye.

Richard and Nichola

I have to tell you this story. I write to a couple in South Africa. He came down with Blastic Plasmacytoid Dendritic Cell Neoplasm (see tab above) last year.

He got a bone marrow transplant 7 weeks ago. He's doing much better than I was doing at that time. I'm very glad for him because Nichola, his caretaker, broke her heel falling out of a tree! He's no longer just the patient, he's the caretaker, too, because she's less mobile and in more pain than he is!

I've asked for prayer for them before. Thank you for those who have prayed. Other than this one awful development, he's done incredible. You might want to pray for them again.

Friday, May 4, 2012

Day 108: I Should Have Said "Lord Willing"

I just glanced at my last post. Nothing I said at the end of it is true. I should have said, "Lord willing, I'll see the long-term doctor on Thursday and finish photopheresis on Friday and Monday."

They did pull my central line, the Hickman Catheter, on Wednesday. By afternoon, though, I'd noticed that the swelling in my neck had increased and spread to the top of my sternum. I called Vanderbilt, and they sent me to the emergency room in case I was bleeding from the catheter removal.

I wasn't then, but I sure was the next day.

They kept me overnight Wednesday night in the emergency room for observation. They wanted to make sure the swelling didn't obstruct my airway or stop me from swallowing. That night a decision was made to give me Heparin intravenously rather than the Lovenox shots.

I was put in a private room in the emergency room (thank you to the wonderful resident who understood the issues involved with immuno-compromised patients). I stayed overnight there, being treated at the start by an RN who looked remarkably like my son, the one who just got married. He had my son's mannerisms and facial expressions, too, which made for a weird but pleasant experience.

For those that know my son, here's a couple photos of the RN (who fortunately is older than my son, close to 30).

In the morning, a different nurse came in and gave me my medicines. She checked the bandage on my chest from the catheter removal, and it was fine. Perhaps a little red spot.

Then the heparin kicked in.

An hour or two after the nurse had checked the bandage, the doctors came in doing their rounds. The bandage was completely red and perhaps even under pressure. The understudy doctor (the resident?) asked the main doctor if he should stop the heparin immediately. The main doctor said yes.

They left to do the orders, and the nurse came in to replace the bandage. She pulled it off and blood ran everywhere.

For the next hour, the emergency room tried to figure out what to do. They did get me off the heparin, and apparently heparin's blood-thinning properties go away within hours. I didn't really want to bleed all over the bed for hours, though. I told the nurses there that radiology had told me that if my chest bled, I should put pressure on the jugular vein in my neck, not on my chest, but they were having trouble believing that.

They did manage to slow down the bleeding and apply a new bandage to my chest. I tried to help by applying my own pressure on the jugular vein.

(I don't think the timing is right on that picture. I think I did this before the first time that the nurse pulled the bandage.)

An EMT came to help her, and when he lifted the bandage, there was a small explosion of blood that splattered all over the bed, my shirt, and even on him. The blood then began running off my chest and pooling in the crook of my arm, quickly enough to alarm me. Of course, it alarmed me worse than them. They have a better idea of how much blood a human can lose, and my red blood cell counts have climbed into the bottom of the normal range.

Finally, a radiologist came over and told the EMT, who was a beefy guy, to apply ten fingers of pressure, making sure to emphasize the jugular vein above the collarbone, but also to apply pressure to the whole tract from the collarbone to the hole on my chest where I was bleeding. The radiologist then applied pressure to the jugular vein to show them that this stopped the bleeding immediately, proving that the bleeding was coming from the jugular vein, then traveling down the tunnel under my skin to the insertion site.

Between the EMT's pressure and the heparin wearing off, we finally got the bleeding stopped. Not long after, they moved me up to 11 North, where I had spent so many weeks doing chemo and the transplant, and they kept me overnight only. They released me early this morning, and now I'm back home.

The nurses and my wife think the swelling is down on my neck from the blood clot. The doctor tells me that it could take weeks for it to go completely away. They're going to put me on blood thinners (but not heparin!) for three months. Usually, it would be six months for a patient who developed a clot, but since there's a cause for my clot (it developed around the Hickman catheter site), they are only going to do three. I'll get a few days of the twice a day Lovenox shots, and then they'll put me on a pill called Coumadin. I think most heart patients have heard of it or taken it.

So, Lord willing, the plan is for me to go in for photopheresis Monday and Tuesday, see the long-term doctor on Wednesday, and then be put on long-term care, coming to Vanderbilt only once per month or so. They'll do blood checks with my family doctor possibly more often.

Tuesday, May 1, 2012

Day 105 News

I already posted today about my son's wedding. I think you'll enjoy the pictures in that post and in the previous one (Day 101). I don't want to hide those by posting this one.

We went back to Selmer over the weekend, and we're going to move into a different house than we lived in last year. Friends set up a bed for us, and when I got a stiff neck on Saturday, I assumed it was from sleeping wrong on the new mattress.

I know something about treating sore muscles, so I massaged the specific sore muscle and did some acupressure. The next day (Sunday, the day of the wedding), it was even more sore. I was frustrated that my treatments weren't working, but I figured if I gave it a couple days, it would be fine.

Yesterday we drove back to Nashville for appointments today. By late afternoon, as we were on the road, my neck was getting sore enough that I was starting to wonder if the tube of the Hickman Catheter had moved and was pressuring the base of the muscle or something.

You may be able to see the tube running under my skin from the bandage up over the collarbone.

When I got up this morning, my neck was killing me. It was terribly painful, and it was swollen, too. I decided to go in early to my photopheresis appointment and drop in on the stem cell clinic and the nurse practitioner, Kelly. She had said to feel free to call, so this was my "phone call."

She looked at my neck and said, "Is that swollen?"

"Sure is," I said.

"So you know what that makes me think of?" she asked.

I didn't, and I told her so.

"Blood clot. I want to order an ultrasound."

They had to really push radiology to get an appointment today. The only appointment that radiology could give me was right in the middle of my photopheresis appointment. They rescheduled photopheresis for next Monday.

Apparently, this was pretty important.

I'm starting to figure out that blood clots are a big deal. I'm not sure how big a deal this one in my neck is, but Kelly did tell me it's a good thing I dropped in on her today.

I had pretty bad hemorrhoid issues (better now) the few days before the wedding, so I did a lot of laying around and even skipped the family dinner so that I could be sure I'd be able to sit and stand through the entire wedding on Sunday morning. It's possible that laying around for most of three days contributed to a clot forming.

Anyway, I got prescribed 14 days of twice a day shots with a blood thinner called Lovenox.

They administered one before I left today. I got a bunch of insulin shots when I was being fed intravenously in the hospital in February, so I'm somewhat used to the idea of taking shots in my belly. The insertion of the needle was almost painless. However, about halfway through the injection of the Lovenox, it started burning. It burned uncomfortably for 5 to 10 minutes.

You'd think that after all I'd been through that would be no big deal.

Nope. I'll be nervous as can be when my wife jabs me tomorrow morning.

Maybe I can ask the psychologist about it. I have an appointment tomorrow morning with someone whose name I didn't recognize. I knew I'd asked about it once about 3 weeks ago, but I'd forgotten what it was for. As it turns out, it's the psychologist. All transplant patients get a psychological exam, mainly to check for depression (I think), before we get moved to long term care.

Right after that, they're going to pull my Hickman Catheter. It probably contributed to the clot. Kelly wanted to get it done today, but radiology couldn't get me in for that.

The photopheresis nurses showed up shortly after the decision was made to pull the catheter. It allows the nurses and doctors access to my bloodstream without sticking a needle in me. The photopheresis nurses, if they were going to have to stick me with a big needle, wanted to see my forearms, specifically the veins in my forearms.

They were happy. They picked a vein in each arm, and they told me not to share them with other departments. "Make them use the veins in the back of your hands if they want to draw blood. Those look great," they said.

So it's psychology and the catheter removal tomorrow. (Yay! Showers without Press-N-Seal!) Then it's the long-term doctor and nurse practitioner on Thursday, which hopefully will result in my being able to drive again. Then Friday and Monday I'll have photopheresis treatments, which will probably be the last ones, but we don't know that yet. The final decision lies with Dr. Savani, my long term doctor, on Thursday.

That's the news. Great day to all of you!

My Son's Wedding

I have friends who arrange pictures in beautiful arrangements on their blog. I don't know how to do that, so here they are in a column.  (I've never been very artistic anyway.) These pictures were taken by Nichole Park, sister of the bride, and Ashley Hall. They're both excellent photographers. Nichole has a photography blog at where you can see more of her work. (What's funny is that right now pictures from Ashley's wedding, the other photographer I just mentioned, are in the second post down. Or go straight to that post.)

First, the bride, Hadassah Pavao (yay!). Is this a great picture or what?

As I mentioned in the last post, we don't do traditional weddings. The bride and groom were up front on a couch, and a somewhat living room setting was created around them.

A couple things about that setting. The picture in the background was painted Friday night at the love feast (which is sort of a longer, larger communion service; it's an actual Lord's "supper," rather than Lord's snack). One of the ladies at our community, Cheres, paints these incredible paintings while a song--or two or three songs--are playing. This one was done through two songs, and she painted it upside down, so no one could figure out what she was doing. She turned it over, and there was a collective intake of breath as everyone saw what she'd done.

The couple at the bottom of the painting is actually my son and his new bride, not just a generic couple. Cheres is a really good artist.

I don't want you to think, though, that the wedding couple sat there so somber through the whole wedding, so ...

The next picture is the lovely mothers of the bride and groom. That's my wife Lorie on the left, and Simchah, mother of the bride, on the left.

I was there, too. This was us with the wedding couple.

And I got to dance with the bride!

The cake was done at the family dinner the night before the wedding. The following picture is the crucial moment when the bride decides whether to feed the groom the cake or smash it on his face, and the groom wonders what's about to happen to him.

The following is just a particularly good picture of the bride and groom at the wedding.

Ok, I'm winding down. I don't know how good I am at picking pictures. This is us enjoying the wedding. That's my mother-in-law to the right of my wife and my daughter Leilani in front of us.

All good things must come to an end ...