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.

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.

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.

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 eosphotographynp.blogspot.com 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 ...