Day 101

I wrote a note on Tamara's blog asking her to keep us updated as she can, and I haven't written in 9 days!

Everything's well. I'm having some minor physical issues, but no graft-versus-host disease, my strength is increasing, and I blew through all my 100-day tests so that I can move to long-term care. I literally blew through them. The nurse-practitioner seemed pretty surprised when she informed me that my pulmonary function tests were better than before the transplant.

They checked my bone marrow. It's 100% donor, as are the two cell lines they check in my blood.

On May 3, that's this coming Thursday, I meet with the long-term doctor and nurse-practitioner (whose last name is Lucid, which seems like an interesting name to have). It's also possible (probable) that will be my last photopheresis treatment, which means I can have my central line taken out and quit having to Saran wrap myself (actually Press-N-Seal) to take a shower.

I'm back at home for my son's wedding, which is Sunday. After that, we'll spend next week doing appointments, and assuming they put me on long-term care on May 3, we'll begin moving back home the following week. I'll have been living in Nashville for almost 10 months by that point.

We're thrilled about the wedding. My son is 20 years old, and we're proud of him. We've not only seen him grow up, but his bride-to-be as well, whose name is Hadassah, though we just call her Dassi. I still remember teaching the both of them math in 4th and 5th grade when they were being home schooled and then Algebra as well in high school.

You may already know that I live in a Christian community. Our weddings are, well, spectacular. We haven't felt compelled to do traditional weddings, so the bride and groom dress in beautiful costumes from whichever era of history or civilization that appeals to them. (Of course, my son and soon-to-be daughter-in-law chose America, 21st century, so they'll be in a tuxedo and wedding dress.)

We don't do a traditional walk up the aisle, and there's no pastor at the front, though we have several of those. One of my favorite weddings was done in the woods just last year. The groom rode in on a horse:

As did the bride, with her father:

Noah and Dassi won't do the same. They'll enter to an old Twila Paris song, then take their place in seats at the front. There will be a microphone, and family and friends will get opportunity to bless the bride and groom or to tell some entertaining story from the past. There will be milling, coffee, pastries, pictures, and then a final dance with the bride and groom before they escape to their honeymoon, usually paid for as much by the friends they grew up with as by themselves.

I had hair at this wedding in 2010. That's my wife and I  in the back.

Tonight, there's a love feast. Bread, wine, and lots of praises. I can't drink any wine at all due to medication I'm on. In fact, I was told not even to wash my mouth with an alcoholic mouth wash. (We drink wine at our love feasts, but drunkenness is something the Scripture forbids to us.) Tomorrow there's a dinner with all the visiting family, and the wedding is Sunday morning.

Finally, though, one more picture of Sunday's bride and groom, enjoying themselves with friends:

That's Dassi and Noah up front, my daughter Janelle on drums, and a friend, whose camera took this picture, on guitar.

Day 92

I'm sitting the hematology clinic awaiting a bone marrow biopsy. Today is what they call my "hundred-day workup." Obviously, they don't do it right on day 100, as evidenced by the title of this post. It's called the hundred-day workup because it's the tests they do before they turn me over to the long term clinic at day 100.

I got a bone density scan around lunch time. That's basically an x-ray of the hips, pelvis, and lower back. That was followed by a pulmonary function test, which wasn't that bad today. There's a test you have to do in pulmonary that involves quickly exhaling all the air in your lungs, then trying to continue to exhale for 15 seconds or something like that. That is NOT natural, and the last time I got tunnel vision and came just shy of passing out.

This time that part of the test seemed shorter, and she only repeated it once. The first time they repeated it about six times.

That's not really the news, though. The major news came yesterday.

I was given a week before I have to go back to the stem cell clinic, and that's my last visit with them. I'll see them this coming Tuesday, then a week and a half later, I'll see the long-term nurse and be put in the long-term program. The long-term nurse has already called me and told me that their plan is to see me every four to six weeks.

Further, Dr. Jagasia told me they would reevaluate my photopheresis treatments after the next treatments on May 1 and May 3. I may get one more after that, or those may be the last ones. I'm not holding my breath on the photopheresis, but it's clear that they're happy with my progress and ready to let me go on.

He also told me that on cord blood transplants, like mine, Graft-vs-Host disease is common in the first 60 to 70 days, but it's much less common after 100 days. Maybe that infant immune system trains better than adult ones. We won't know on that until I'm further weaned off the immunosuppressives.

At that point, they should be able to pull my Hickman Catheter. The catheter doesn't bother me, but it would be nice to take a shower without having to first use Press-N-Seal on my chest to cover the catheter and its bandage.

I've been a little tired today. Yesterday was a very busy day, and I got a lot done, including a visit with a friend here in Nashville. So I'm going to quit now and finish waiting for my marrow biopsy.

I do want to give thanks to God for his kindness towards me and my family every day. I also want to thank him for all the answered prayers I've seen through this blog. Finally, thank you to so many of you who are doing most of the praying!

Day 91

Off to the clinic this morning for a blood draw. This afternoon I also have a breathing treatment that's scheduled every month to help make sure I don't get pneumonia. They give that to all the transplant patients.

I'm hoping the breathing treatment will help a little with the minor allergies I've had the last week and a half. The clinic has already tested me to make sure it's not a cold or flu. Pollen levels are about the worst they've ever been here in Tennessee. In fact, I just read yesterday in Discover that Knoxville, 3 hours drive from here, is the worst city in the United States for allergies (based on number of visits to doctors, allergy medicines purchased, pollen levels, and a couple other such factors).

It's not that the allergies are bad. They've been worse. It's just that sniffling and coughing are scary to transplant patients. My nose and throat got really dry last night, and I had to spend an hour sleeping almost upright on the couch, which helped immensely. Time to get that humidifier back out.

I wanted to request prayer for Tamara. She's getting her central line today, which they'll use to draw blood and give IV's, including the chemo regimen she'll be getting leading up to her transplant on May 2. Inserting the catheter is a full anesthesia surgery, minor surgery though it is.

Thanks. Good day to all of you!

Day 90

I've been practicing saying "Lord willing," for two weeks solid.

Things have been going smoothly. I've been getting stronger. I'm going into the clinic just twice a week, plus the photopheresis treatments, which they try to schedule on my clinic days. I've been home the last two weekends.

My daughter Leilani (left) and Katie, who gave me the "It's all good" T-shirt that's become my motto for leukemia treatment, went to a Hatter Tea Party this weekend as a prep for a local play based on Alice in Wonderland.

On Friday, I got a call from the long-term nurse practitioner. She said they plan to transfer me to long-term care as of May 3. That would mean visits to the clinic every 4 to 6 weeks. I would then give up the apartment that the American Cancer Society, the "Open Arms" program, and the apartment complex graciously donate to a hematology (blood disease) patient and their family, and I'd move back home to Selmer, about two-and-a-half hours away.

Of course, that's assuming there's no bumps in the road. If there's anything I've learned over the last 9 months, it's that there's an awful lot of circumstances and possibilities that I have no control over.

So I've been telling people, "I should be moving back home by mid-May ... Lord willing."

Come now, you who say, "Today or tomorrow we will go to such-and-such a city, stay there a year, and buy and sell and make money." You don't know what will happen tomorrow. ... You ought to say, "If the Lord wills, we shall live and do this or that" (James 5:13-15, Bible).

My hair's coming back. I grew a moustache two weeks ago and a goatee over the last week. I have a fuzzy, soft hair coming in on my head.

Maybe I'll have the equivalent of a crew cut by the time I get to my son's wedding (2 weeks).

What I'd really like, though, is to have full eyebrows. It's a little weird having eyebrows that are barely there. In the movie, The Lord of the Rings, they shaved the eyebrows of the actor who played Wormtongue to give him a more sinister or bizarre appearance. Not everyone notices the lack of eyebrows, but it affects your overall effect on people.

For Fellow Transplant Patients

First, not everyone's hair will be gone until day 90. Jerry's hair came back thick within a few weeks of his transplant.

Second, I want to pass on a pleasant bit of exercise advice. The following applies to anyone who needs to gradually exercise back into shape, or who has a lot of blood drawn, not just to transplant patients.

The physical therapy people gave me a stretchy band like the one in the picture above.

The one I'm using isn't theirs. It's a better, stronger one that my wife picked up for yoga. You can find them in the yoga section of any store that has an exercise section. I think they're pretty inexpensive.

Anyway, I know that soon they will be removing my Hickman Catheter, the permanent port on my chest that allows the nurses to draw blood and administer IV's without having to stick me with needles. Once they do, the nurses will have to find the veins in my forearms. If they're easy to find, then you get one stick and probably no bruising. If they're hard to find, there can easily be 4 or 5 sticks and lots of bruising, along with the nurse sliding the needle around under the skin trying to find the vein.

Not good.

This inexpensive little band can be twisted and pulled to work out my fingers, wrists and forearms, making the veins in my forearms larger and easier to find. I've been using it since I got out of the hospital, and my veins are significantly easier to see already. (Note: a nurse told me hydration makes a big difference in the veins as well. So, if possible, be well-hydrated if you're going in for blood work or IV's.)

That band can also be used for all sorts of upper body exercises without leaving your chair. You can also loop it over your foot and do some leg exercise the same way.

Wrap it around your shoulders and this is like a push-up, but easier.

I've found this really great on days that I've not had much energy. I could start using the band, without a specific set of exercises to do, and it's a lot like playing. If I keep the band loose, it stretches out the joints and feels pretty good. By the time I've played with it and stretched a bit with it, my energy level has usually increased, and I'm ready to wrap it around my hands, pull the band tighter, and do some real strength exercises. Or, if the problem was just that my energy level was low, it often has increased my energy level to where I'm now much more willing to get up and do a good walk.

The band also helped when I had the urinary tract infection. Walking would irritate my bladder terribly, but I could sit in the chair and do all the exercises I want with the stretchy band. If you wrap it around your hands some so it's tight, you can do some hard work that will make you breathe hard.

The doctors really push the exercise because it helps with mood, attitude, and recovery. The difference between patients who exercise and those who don't, they say, is immense. The band is one way to make it easier.

Day 84

Things are well with me. I'm in the hospital getting my photopheresis treatment, which appears to be taking care of the Graft-vs-Host problems I've been having. They've trimmed my steroids down to a minimal amount, and as of yesterday they started dropping the amount on one of my immunosuppressive medications.

Since they're seeing me only twice a week, we drove home to Rose Creek Village this last weekend. On Sunday, I ran the quarter mile from town hall, where we hold our Sunday gatherings, to my parents' house. That was a milestone for me! I'm getting stronger quickly! Very exciting.

I've been reading blogs today, though, and that can be emotional. Tamara's donor came through, which was a "yippee" moment. She's got some great words about prayer there, too.

On the other side, I got an email from the daughter of a wonderful lady, Judy, who's been emailing me for months. The daughter wrote to tell me that Judy had died, but that she had spoken highly of me and my blog. I cried when I read the email. Judy was so encouraging and had such a great attitude. She had BPDCN (see tab above), but because she was in her 70's, she couldn't get the treatments I describe on my page on the disease. Apparently, it finally got her. It's an aggressive disease, and without a bone marrow transplant, which is usually not an option for someone in her 70's, life expectancy is not long.

Then I ran across a blog called The CLL Ranch. CLL stands for Chronic Lymphocytic Leukemia. Chronic leukemias are less aggressive than acute leukemias, but generally they are less curable as well. People with CLL, CML and various other forms of chronic leukemias live with it for the rest of their lives, needing expensive treatments. Barry, the author of the CLL Ranch, is having a rough go of it. Can you offer up a prayer for him?

Finally, I added Praise You in This Storm to my blog list. It's another really encouraging blog by a cancer patient with a wonderful, believing, inspiring attitude.

Day 79: A Bit of Freedom!

I can't believe it's been so hard to keep writing this blog. I need to update y'all, though.

I'm off the Foscarnet, and the "just-in-case" round of antibiotics, both of which were daily. As a result, I only need to go to the clinic twice a week. This week I went on Monday and Thursday (today).

So Saturday, for the first time in a very long time, I was able to have a day away from the clinic. Since then, I had Sunday, Tuesday, and Wednesday off, too. Very nice.

Mostly I took the extra time to get a little ahead on my Through the Bible in a Year blogging and to do my business taxes, which I finished yesterday. To my amazement, it went quite well, despite having to use GoToMyPC.com to access our accounting software.

So here's my progress.

The really big thing is that my body is apparently defeating that BK virus, which means my immune system is up and running better than it has been. The BK virus can cause some serious kidney and bladder problems if you don't stay hydrated, but even if you do, there's some annoying effects. For the last four or five weeks, at least, I've had to get up every hour of every night to go to the bathroom. That means I've been sleeping one hour at a time since I got out of the hospital back in late February.

That's been steadily improving for the last few days. I only got up twice last night.

There's three major blood counts to monitor:

• White blood cells - the immune system
• Red blood cells - they carry oxygen
• Platelets - they clot the blood to stop bleeding

My platelets have stopped rising, still about halfway to the bottom of the normal range. The platelet count was 69 today. That's not too bad, since they're supposed to be the last to recover, anyway.

What's nice is that my red blood cells are climbing now, too. Yesterday and today's reading was 38%. 45% is normal for a male, and I've been sitting around 30% until a week ago.

My white blood cells stopped increasing, too, but they're in the normal range. Today at the clinic, my neutrophils—the white blood cells that fight bacteria—took a sharp drop. I don't know what that was unless the neutrophils are helping with the fight against that BK virus. Killing pathogens does lead to white blood cells dying.

Sun-protective hat and sleeves. Sunscreen only needed on hands. The hat's flaps velcro together to stop the sun you can see on my face as well.

I've been plugging away at the exercise, and while I would still describe myself as scrawny, my muscles are tightening back up, and I can see some progress. I still can't do a pushup, but I get a little closer each week. Yesterday was a beautiful spring morning, so I put my sun-protective hat on, added a little sunblock to my hands, wore a long-sleeve shirt and walked a course I know to be about a mile.

It was great! Very pleasant! Of course, if the last 100 yards hadn't been downhill, I'd have been calling home for a ride, but it was, and I made it. I can also run about 50 yards. Maybe that 5K in the summer isn't impossible. I just want to make it in 45 minutes, which would be 15-minute miles.

No way to know if I'm dreaming until the time gets nearer.

I Don't Have an Inside Voice

One of the good things—and there are a number of them—about being treated for leukemia is all the people that you meet.

Lynora

The other day, I overheard Howard, who deserves a writeup here as well, trying to quiet someone at the front desk by telling her to "use your inside voice." A lady's voice then answered, "I don't have an inside voice."

I knew exactly who it was, even though I couldn't see them from my room.

Almost no one can make your day start on as high a note as Lynora. She's sitting at the desk every weekday morning at the clinic waiting to check us in with a rousing hello and all the right papers that you need to make your hospital life go smoothly. She laughs quickly, loves on everybody, and she doesn't have an inside voice.

Other Blogs

Let me make a plug for my blog roll in the right column, too. Some of those blogs are extremely inspiring. The most recently updated ones rise to the top, so they're easy to check on.