Thrilled to Death: Paul Pavao's Leukemia Blog

noreply@blogger.com (Paul Pavao) — Sat, 13 Apr 2019 14:36:00 +0000

This is my health update, which apparently will come every year. I see from my interaction on Facebook's "Bone Marrow & Stem Cell Transplant Patient Support" group that bone marrow transplant patients like to compare notes on recovery and on recovery times; therefore, here is my current report.

I am seven years and three months post-transplant. I am off all medication associated with the transplant. My feet and lower legs have completely recovered from the neuropathy caused by Tacrolimus (Prograf). I stopped taking it in 2014. I cannot remember if I stopped taking it because of the diagnosis of my secondary cancer, Diffuse Large B-cell Lymphoma. Obviously, they wanted my immune system to be as strong as possible for fighting off the lymphoma.

The Rituximab that was part of the chemo for the lymphoma caused 9 months of neutropenia, but the chemo did put the lymphoma in remission. The neutropenia led to hemorrhoids that got worse and worse. The result was little exercise through the spring and summer of 2015, which set back my physical and mental recovery quite a bit. Time does help both the body and the brain recover from chemotherapy, especially in regard to memory.

I have found it difficult to recover strength. I do exercise, but the gains are minimal. This is not debilitating. I think am stronger than most 12-year-olds, less strong than most teenagers, even young ones. I can run, fast or slow, about 200 yards, and I can do that repeatedly if I walk for a while in between. I can walk several miles without any real difficulty except that my feet hurt. I used to run 20 or 30 miles per week in my 40's, so I miss that ability. I am not sure why I cannot build up past 200 yards of continuous running, but that has no effect on quality of life at age 57.

I work full-time. I have significantly more fatigue in the mornings than I had pre-leukemia, but I seem to have good energy by lunch time every day. I do not get sick any more often than I did before leukemia, and I generally recover just fine. I do have worse allergies than most people, but they are not terrible.

My life is wonderful. My youngest daughter will graduate from high school next month. She is a great kid. My wife and I love each other more than ever, and we are actively serving the Lord together. Her mother, diagnosed with Alzheimer's, lives with us, and my wife babysits our grandson two days per week. I am in the editing stage of my second full-length book. I still help run the business we own, mostly handling the finances while managers keep the business running smoothly. I also serve as an elder in the church here, so I have a very active life.

(I write about church history. Decoding Nicea sells about 40 copies a month nowadays. I am hoping the release of Taking Aim at Rome's Audacious Claim will boost its sales even more. I expect that to happen in September.)

That's my update. For those that came here because you were diagnosed with BPDCN, like I was, there is hope and life in front of you! I exhort you to put your hope in God through Jesus, but this blog has lots of practical advice and experience in it as well.

Grace to you!

noreply@blogger.com (Paul Pavao) — Sat, 26 May 2018 14:12:00 +0000

This is just a notification that I am still alive and will turn 57 in July. The only medication I am taking is 2.5 mg of Prednisone, which is a very tiny pill. I suspect I could quit, and nothing would happen. I see Dr. Reddy to follow up on my lymphoma once per year, and I see a Nurse Practitioner named Melissa on the same or next day to follow up on the leukemia/BPDCN. Melissa is dropping the prednisone dose slowly because she said she doesn't want to "crash my adrenals." I suspect in January she will drop me to 2.5 mg every other day, then end it in 2020.

The lingering effects are that I don't have the energy I had before the leukemia, lymphoma, and the 9-month neutropenia that came after the lymphoma. (I think the 9-month neutropenia had the worst effect on me.) Getting back in shape is hard, and if I over-train, I get intense fatigue that can last for an extended period of time. Still, I am making slow progress. I can run a hundred-yard dash, which feels like sprinting, but would have been a jogging pace in high school. It takes 25-seconds to "sprint" that 100-yard dash. One of my workouts is to walk/run a mile fitting in about 5 or 6 of those 80-yard dashes. (I have 80 yards measured, not 100.)

On the other hand, I can walk miles. My feet hurt when I do, sometimes a lot. I've tried a lot of shoes, but nothing seems to help. My blood pressure and heart rate are good, but my cholesterol is terrible despite the fact that I have an excellent diet. On the other hand, I gave myself a heat stroke mowing the lawn for 45 minutes in July in Tennessee (90+ degrees and humid) wearing sun-protective clothing. The hospital gave me a thorough checkover because of this, and my arteries are clear. The cholesterol is not affecting my blood flow.

I can work as much as I want without tiring, but I have a desk job. Some days--but no mornings--I am bursting with energy. Other days I am not. I suppose that's pretty normal.

Oh, one more important thing: chemo and the nine-month neutropenia trashed my memory. About a year ago I heard that sage (the spice) improves memory. My wife had some sage tea ("Relaxed Mind" from Yogi), and I decided to give it a try. Success! Success! Success! Very noticeable improvement!

The cognitive test for whether the sage tea was working was a chess game on my phone I used to play. After the cancers, I played against it, and I had to keep lowering the levels. At some point, I got tired of being beat, and I quit playing. After a few weeks of sage tea, I opened the game again, and played it at the level I was losing at, and I won three games in a row. I am very excited about this, and as I said, the memory and clear thinking improvement is noticeable. One cup of sage tea a day. Who knew?

Not to go overboard with that, I am 57, and I seem to have the same sort of memory problems all my 50-some-year-old friends have. I can't think of words and names as well as I used to, but I'm no worse at that than my friends.

That's my six-year and four-month post-transplant follow-up.

Back to Full Health

noreply@blogger.com (Paul Pavao) — Wed, 30 Dec 2015 16:21:00 +0000

I'm going into the New Year ready to try something new: being healthy.

About six weeks ago, my neutrophils came back. It still strikes me as funny that all my friends now know what neutrophils are, but for those who don't, neutrophils are the most abundant cell in your immune system. They are the leading infection fighters ... unless you don't have any.

Here's the story, briefly revisited:

In November, 2014 I was diagnosed with lymphoma after a hospital visit for a blocked bowel. The tumor was right at the connection of my large and small intestines, and though they never measured it, they think it was about the size of a baseball.

The exact version of lymphoma was "enlarged b-cell diffuse lymphoma" or something like that. I didn't study it like I studied my leukemia. The lymphoma was supposed to be relatively easy to deal with, and so it was. I was supposed to get six rounds of chemo, and the rounds were going to be much easier than the leukemia chemos.

I only got four because after the fourth one, my immune system never recovered. My neutrophils never came back. That went on for nine months.

During those nine months, February to November of 2015, I got booster shots anywhere from 3-5 times per week. Those only boosted my neutrophils a little, and I had at least 10 visits to the emergency room for fever or vomiting. Most of those resulted in hospital admissions.

No one knew why I wasn't producing neutrophils. One of the chemotherapies I received was Rituximab, but the Vanderbilt doctors told me I just didn't fit the pattern for neutropenia associated with Rituximab. With Rituximab, one's neutrophils usually come back, then drop a month or two later. Not only that, my neutropenia didn't happen on the first dose of Rituximab, but the fourth.

My local hematologist-oncologist (blood cancer doctor) never worried. He assured me that whether it fit a pattern or not, my neutropenia would end. He would give me the booster shots to keep me as infection-free as possible, and we would wait.

We waited nine months, and now it's over.

It's weird. It's like the quiet after a storm. What do I do now? My life had been focused on blood draws, Neupogen™ shots, avoiding possible sources of infection, and making trips to the ER for nine months. Now all that was gone rather instantaneously.

Really, it's remarkable. When I stopped getting the almost daily Neupogen® shot, my energy returned. I'm almost weaned off the medications I was taking for the bone marrow transplant back in 2012 (for leukemia). I'm a normal person, boom!, just like that.

I spent the holidays with family, doing twice a week visits to the clinic to check my blood. I didn't have to avoid children. I could shake hands and hug without fear of getting sick. Weird.

So now it's December 30. I can't say I'm going to make New Year's resolutions this year, but I am going to schedule my time as though I were healthy. I'm going to write more and get back into my distribution business a bit more. Who knows? It's like returning from a long trip. I have to figure out what to do with my life.

Neutropenia Forever?

noreply@blogger.com (Paul Pavao) — Fri, 02 Oct 2015 21:17:00 +0000

For those of you that are following my second cancer journey, here's my update. First, a quick review.

Nov. 2014: Diagnosed with Diffuse Large B-Cell Lymphoma, probably caused by the immunosuppressives used to protect me from the transplanted immune system that cured my leukemia.
Dec. 2014 - Jan. 2015: Three rounds of typical chemotherapy with typical recovery. Remission achieved.
Feb. 2015: Three more rounds of chemotherapy left, but my blood counts don't bounce back from round 4.
Mar. - Sep. 2015: One of the two important White Blood Cells comes back. The other, neutrophils, does not.

Towards the end of August my local hemotologist-oncologist, my wife, and I come up with a treatment plan designed to keep me out of the hospital. I had had seven or eight emergency room trips since February and four or five hospital admissions.

The plan was, and is, to give me five Neupogen shots a week, one each day Monday through Friday. Neupogen (Growth-Colony Stimulation Factor) makes your bone marrow release cells into the blood stream. Generally, three or four days of Neupogen shots generally gets my neutrophils up into the high normal range, greatly reducing the chance of infection and disease.

That worked through September. In fact, even this week I did not wind up with any fevers or other problems that might put me in the emergency room. One thing did change this week. The Neupogen shot stopped working.

As of this morning, after four consecutive days of Neupogen shots, my neutrophil count was zero. No other blood cell counts had climbed, either.

I was shocked when I saw the counts. I smiled and said, "Frightening," to the nurse.

She replied, "Sure is."

Worse, one of the signs that the Neupogen is working is throbbing in my bones, especially my hips, lower back, and ribs. I had none of that this week, until this morning. This morning, though, the throbbing pain was pretty strong. I was somewhat excited about seeing my counts go up from the 100 neutrophils I had on Wednesday.

Being told they were at zero affected my like being slapped on the side of the head. When you're slapped hard like that, your ear rings, and it is hard to clear your thoughts till the pain goes away. When I heard the news, most of my energy drained out of me immediately. A somber mood took over everything from my stomach to my chest to my conscious thoughts.

I had to shake the reaction off to smile at the nurse. It took very little time for the peace of God to drop into my heart, though, and I felt a tinge of excitement. That's what happened to me four years ago when I was told I had leukemia. The grace was beyond description, and I went through the whole 10-month leukemia treatment excited and confident.

Lymphoma has not been like that. I have fought for faith. I have fought for joy. I have fought to keep my visitors and nurses happy and light. I have failed here and there, slipping into a temporary depression that required a lot of rest and drawing close to God, who did not seem to be drawing close to me.

During the last six months, God has not been easy on me. His presence has been rare. Just a few words for him have gotten us through. My wife heard, "This is for salvaiton." We don't know what that means.

I heard things like, "This isn't about your comfort." Other mornings, I could hear him telling me, "Don't be weak. Get up. You can do it."

I felt driven with no slack given. I am a disciple, so I am okay with that, but it was not easy. Two weekends ago, though, I hit the end of me. I came back from two full days that each ended with having to do a long favor for someone else. I was unable to maintain my cool Christian composure for those favors. My "yes" to the favors came out as "This is a nightmare!" I was not a cheerful giver.

The next day I was done. I wondered if God was trying to kill me. I doubted everything I had ever done for God. I hunted my memory for people that I was sure I had influenced positively. Several came to mind, all immediate family or very close friends. The thought of each one put a smile on my face despite the gray sense of doom hanging over all my other memories.

I told God, "I ruined my life for that book that the Protestants claim is their 'sole rule' for faith and practice. For almost all of them, it's not close to their sole rule. Their denominational traditions override the Bible in almost every one of their major doctrines. I made the Bible my sole rule, however, and it ruined my life. Today I don't even believe 'sola Scriptura.' I believe we need the guidance of the traditions the apostles gave to their churches (2 Thess. 2:15). Did I make a mistake fighting for what I saw in the Bible?"

I was really wondering if I had mostly wasted the last 33 years of my life.

I didn't want to look weak, so it took a long time that day to tell my wife I needed help. I was despairing of the value of my whole life, and I could see nothing in the future.

She called some friends to come help her help me, but then God intervened as only God can intervene. My 13-year-old daughter came in with a bizarre request. "Can we eat dinner on the roof?"

To make a long story short, I said yes, and we ate leftover Kentucky Fried Chicken on the "flat spot" on the roof of our house. I didn't even know our roof had a flat spot. It's right in the middle of the house. Apparently, Leilani had been walking around up there so she could enjoy the weather and the view of the lake out back.

How can you be depressed when you're eating Kentucky Fried Chicken on the roof with your wife and darling daughter?

The last two weeks, unless I am reading them wrong, have been God telling me, "You made it. You pushed all the way through. You went as far as you could go. I'll take it from here. Rest."

The grace I had experienced during leukemia returned. My joy returned without having to fight for it. I'm feeling taken care of and warmly loved, not driven.

The lastest sense of that was driving home from the clinic today. I was seized with an inexplicable happiness. Probably that was the prayers of others. My wife texted everyone we know.

Physically, I am not better. I didn't sleep well last night, so I looked up "permanent neutropenia" wondering if I was going to be like this for the rest of my life. I think only one or two people have had a permanent lack of neutrophils from lymphoma treatemt. More have had it from treatments for thyroid cancer. Still, the incidence of permanent neutropenia among those treated is no more than 1 in 3500.

I've had rarer odds than that happen to me through this double-cancer trek.

How can a body stop making neutrophils? It appears that some patients have created antibodies that defend against their own neutrophils! Wow!

Maybe that's my problem. The doctors tell me I have a normal amount of neutrophils in my bone marrow. They are either not getting out, or they are being destroyed as soon as they get into my blood.

Yikes!

Today, though? It just doesn't matter. I am with God. God is with me. What neutropenia? What blood problem?

Neutropenia Is Now Good News!

noreply@blogger.com (Paul Pavao) — Mon, 18 May 2015 23:15:00 +0000

Usually a neutrophil count of 270, which is so low that it's considered "neutropenic," is bad. Today, though, a neutrophil count of 270 is wonderful! I was expecting zero.

Exactly one week ago I had a neutrophil count of 300. I refused a Neupogen shot (a white blood cell/neutrophil booster) on advice of my doctor at Vanderbilt and went through the week assuming I was neutropenic. For the last three months, I could be confident that if I didn't get a Neupogen or Neulasta shot, my neutrophils would drop to zero. Since those are the cells that fight bacteria, that means I have to wear a surgical mask, wash my hands all the time, avoid raw foods, etc. I can't even mow the lawn or do plumbing.

Today, after one week, I am still neutropenic, but I am not at zero! I am at 270! Something really has kicked in. Now we see how well it's kicked in. I'll get a blood check again next week, here locally. No more neupogen shots. My body has to do this on its own.

Nothing But Neutropenia

noreply@blogger.com (Paul Pavao) — Mon, 18 May 2015 00:05:00 +0000

Thanks to Tamara for leaving a comment on my last blog and thus reminding me to update all those wonderful people who have been good enough to follow my journey and pray for me.

As of February, I am in remission for lymphoma. There's already a Leukemia and Lymphoma Society, so I guess if I'm going to start something for people like me, it will have to be the Leukemia and Lymphoma Club. I know at least one other person who could qualify for it, and that person also had a third cancer, breast cancer, before her leukemia and lymphoma bouts.

My remission has been confirmed several times.

Which brings me to the reason it has been confirmed several times.

After round 4 of my planned 6-round R-EPOCH treatment, I got an infection, then the flu.

I muddled through all that with a little barfing, a couple emergency room trips, some lying around in the hospital, and losing ten pounds. I hate having to rebuild my shoulders and thighs back to normal, and now leukemia, pneumonia, and lymphoma have all made me have to do it. Ah, well.

The real problem is that after the month of sickness in February, my neutrophils never recovered. That's the part of our immune system that fights bacteria. I wasn't making any, and no one knew why. My other counts stalled out, but they weren't dropping. The neutrophils, however, dropped to zero and made no effort to come back without booster shots (Neupogen).

My doctors at Vanderbilt were "at a loss." No explanation whatsoever.

I went home at the start of March to eat chicken soup, rest, and hope the doctors could figure something out.

I was getting my blood checked here in Memphis (3 hours from Vanderbilt in Nashville) with a local hematologist. He told me, "I've seen this before. Only twice out of hundreds of lymphoma patients, but it's a reaction to Rituximab. It's temporary, and we just need to wait it out.

He put me on a 3-day per week regimen of blood checks and Neupogen shots, which kept my neutrophils hovering between 500 and 1000. A reading of 1000 is bad, and 500 is right at the border of "neutropenia." If I'm neutropenic, I can't eat anything raw, I have to wear a surgical mask everywhere I go, and take extreme precaustions to avoid illness.

I did that all of March and April before I finally asked the hematologist how long he expected this to last. One of his patients recovered in days, and the other took six months.

SIX MONTHS?

There are studies backing up this hematologists theory. In fact, one metastudy I read suggested that up to 25% of lymphoma patients who receive Rituximab have "Late Onset Neutropenia."

It was very hard to determine from the metastudy how long the neutropenia lasted on average. It has been almost 4 months, more than 10 weeks, and over 70 days since I had a Rituximab dose. It's been so long that I don't even remember if my neutropenia was "late onset." I know was neutropenic during my flu bout in late February, so I suspect I haven't been making neutrophils since the last round of chemo.

Vanderbilt is tired of waiting I think. On Monday, the doctor called from there to give me the results of a marrow biopsy they have me to make sure I was really in remission. I was on my way in to the local hematologist's lab when they called. I took the call, said I wanted to go to Vanderbilt and see them again, and I was told, "Don't do any more blood checks this week. Don't take any neupogen shots, and come out here next week."

Next week is tomorrow. We'll go to Vanderbilt at 9:45 (leaving home at 6 am) to get blood counts check and talk with the doctor there again. The last time I was there, for the marrow biopsy just last week on Wednesday, my neutrophils shot up to a normal level, which was a real surprise. We were excited, but when I got back to Memphis, they tested me Friday (a week ago) at 500. On Monday I was at 300, and I haven't had a Neupogen shot since. If things haven't changed, I'll be at 0 (zero) tomorrow. If I have any neutrophils at all, it will be a terrific sign of finally recovering.

So I'm still in waiting and watching mode, despite the remission.

Diffuse Large B-cell Lymphoma with Myc rearrangement

noreply@blogger.com (Paul Pavao) — Thu, 11 Dec 2014 02:18:00 +0000

My pathalogy report came back from Vanderbilt today. My Diffuse Large B-cell Lymphoma (DLBCL) is positive for "Myc." The NP pronounce it "Mick." This is known as a "Myc rearrangement." I don't know what that is, but I do know—after researching today—what that means.

Like what happened with the leukemia, a Myc rearrangement attached to DLBCL had a terrible prognosis just 3 or 4 years ago. It's great now.

Apparently, back in the ancient days of 2011 and 2012, all DLBCL diagnoses were treated with a regiment called R-CHOP. The letters stand for the names of 5 chemotherapies used. Except Prednisone, which is taken as a pill, all the chemos are administered in one day, then the patient goes home for 3 weeks, and 6 rounds are given.

With that regimen, 77% of DLBCL patients with Myc rearrangement died within 4 years. Now, though, they use a regimen called EPOCH-R, which stands for 6 chemo drugs, several of them the same as R-CHOP. As a result, right now it looks like 77% are surviving. The latest study came out just day before yesterday!

My first round was R-CHOP because pathology reports weren't back yet. From now on, though, I get EPOCH-R, which will require 5 days inpatient, including 96 straight hours of infusions. Five rounds to go.

Keep in mind that a 77% chance of survival seems "epic" (pun on EPOCH) to me. With leukemia, which also had a long name and a 5-letter acronym (BPDCN, see tabs above), what I found at first was 0% (zero!) chance of survival. Fortunately, that information was 2 or 3 years old, and it turned out I had a 20-25% chance of survival. Whew, much better!

So for leukemia, I was pretty convinced God told me I wasn't going to die. My faith was shaken when I found out my odds of survival were zero. It was easier for me to believe God was in control of a 1% chance situation. Somehow the concrete "You're going to die" was more frightening.

I have no such promise this time, but the church tells me that they still need me, so I'm pretty confident God will grant their desire.

There was a Christian from around AD 200 who said, "Our goal in this life is to get out of it as fast as we can." If we give ourselves fully to God, then we can expect there to be a lot of suffering in this world. We'll be looking forward to departing and being with King Jesus, which is far better.

Some of you may not realize that's the Christian path. Philippians 1:29 tells us that we have been "granted on behalf of Christ," not only to believe in him, but to suffer for his sake. James 1 tells us to rejoice in suffering, and Romans 5 assumes we rejoice in suffering.

A long time ago, before I found out that you can't just "name it and claim it" with God, I attended charismatic churches. We all wanted to pray until our building shook, like the Bible says happened in Jerusalem (Acts 4). We wanted to pray and praise till an earthquake happened, like what happened to Paul and Silas in Acts 16.

It never happened, but I found the missing ingredient over the last 3-1/2 years. Suffering. In both those instances mentioned in the last paragraph, there was intense suffering involved. Try praying and praising when you're in agony. People take notice. Things happen.

That's truly the way to shake the earth and set the prisoners free. Mix your prayer and praise with good, strong, God-given suffering.

Thank you, Lord, for such a gift!

A New Cancer: Lymphoma and Faith

noreply@blogger.com (Paul Pavao) — Wed, 10 Dec 2014 01:11:00 +0000

So I have cancer one more time.

Based on what my doctor said, it's an easier one this time. I doubt lymphoma is always less dangerous than leukemia, but in my case, it is. This is Little League compared to the Big League version of leukemia I had.

I get to face chemo at home, here in Memphis with my brothers and sisters, though the final authorities on my treatment will be the stem cell transplant team at Vanderbilt in Nashville.

How Should I React?

Hearts are tricky. We have to guard our heart because out of it come the wellsprings of life, but we cannot trust it. Without the daily exhortation of the saints, the craftiness of sin will disguise bad as good and make our hearts unmalleable.

For me, cancer has been the great revealer. Leukemia answered questions about my heart that nothing else could have. Do I believe what I teach, that it is far better to depart and be with the King, or will I shrink in terror when death comes near? As it turns out, physical death came and breathed in my face, and I smiled at him. He found nothing in me, and he went his way.

I told people that if they were faithful in the little things, that if they bit their lip when they wanted to insult, that if they gave way when they wanted to step forward, that if they eschewed glory rather than pursuing it, that all the little acts of faithfulness would give them strength for the big acts of faithfulness.

I repeated Amy Carmichael's words: "In acceptance lieth peace." I repeated Watchman Nee's teaching that the circumstances that come to us are God's chisel, molding us to fit precisely into his eternal temple.

But I had no way of knowing whether I believed those words until I was writhing in pain on a hospital bed, in honest gratefulness that I might be delivered from my soft American ways and be a soldier in God's kingdom.

So here comes the chisel again, shaping the hardness of my heart to the power of his will, making me fit into the stones that surround me in the wall of the temple of God.

Such chiseling, shaping, and smoothing does not come by prayer or discipline. It comes by troubles and suffering.

Mia Hamm, the great women's soccer player, once said that the image of a champion is not holding a trophy aloft, but bent over, gasping for breath, and drenched in sweat long after everyone else has gone home.

The picture of the faithful saint does not consist of the sweat of labor, but of songs through tears and cries of praise in the midst of groaning. It is joy in suffering, and as Paul and Silas proved, that joy and those songs shake the earth and set the captives free.

We don't have to make the best of the suffering that comes our way. It already is the best. We just need to embrace it.

"May all who come behind us find us faithful."—Steve Green.

If the following video doesn't load for you, listen on YouTube.

SL-401 Study for BPDCN and AML Patients

noreply@blogger.com (Paul Pavao) — Sun, 24 Aug 2014 08:50:00 +0000

Honestly, I don't understand SL-401 treatment that well, but I know it has worked at least a couple times for those with no other hope. It's a promising new treatment.

Now Stemline Therapeutics has announced a study of SL-401 for BPDCN (Blastic Plasmacytoid Dendritic Cell Neoplasm) and AML (Acute Myeloid Leukemia) patients. The announcement is here:

http://www.marketwatch.com/story/stemline-therapeutics-announces-opening-of-sl-401-corporate-ind-and-start-of-clinical-trials-in-bpdcn-and-aml-2014-07-28

You might want to ask your doctor about it if your treatment is failing, if you have relapsed, or if you are not eligible for a bone marrow transplant.

Update on the New Norm

noreply@blogger.com (Paul Pavao) — Thu, 14 Aug 2014 19:22:00 +0000

2.5 years post-transplant, here's my recovery status:

Medicines

I had a lot of acute GVH of the skin, and almost no other GVH. They say to avoid rash on over 50% of your body, but I was regularly over that. The rash was red, had bumps, but only itched a little. It did not hurt.

To get rid of it, we had to go up to 30mg of Prednisone, a steroid, in the summer of 2013. We've been easing down ever since. Because I had pneumonia in January, 2014, the doctors have been more aggressive in trying to reduce my immunosuppressives.

As a result, I am now at 7.5 mg of Prednisone and a half gram of Tacrolimus (ProGraf). The doctors dropped my antifungal (Voriconazole, and used to be Fluconazole) at the last appointment, July 25. They said that would reduce the immunosuppressive effect of the ProGraf, which is already at an amount they call minimal.

I still take an antibiotic and antiviral every day as a backup because of the mild immunosuppression. I also take Bactrim (another antibiotic) three times a week to prevent pneumonia. Obviously, that didn't work, but I'm still taking it.

Health

I have been on Coumadin (Warfarin), a blood thinner for almost a year because I had my third post-transplant blood clot last fall. It's also the third blood clot of my life. Those can be painful.

Throughout 2013, and maybe some of 2012, I had some tingling, numbness, and pain (neuropathy?) in my feet. It got worse throughout 2013, then was steady in 2014 until April. In April, my ProGraf was dropped in half to the 500 mg I take now. My feet began improving immediately, and my blood thinned to an almost dangerous level over the next couple weeks. We had to lower the amount of Coumadin I was taking.

I think the ProGraf was thickening my blood, causing the clots when I didn't take Coumadin, and combatting the Coumadin when I did. Dropping the ProGraf made the Coumadin work much better.

We dropped the Prednisone again 7/25, and now, just 3 weeks later, I have no feet problems. They feel great, and I am back to walking and even running some. I love it, though the year of foot pain that was increased by walking has left me weaker and less motivated.

I am pressing through anyway.

I am also getting stronger faster than I was. Yay! I'm still not back to my old average strength self, but I'm close.

I did a plank (pushup position but with elbows on the floor rather than hands) and held it for 90 seconds the other night. That's pretty good for an old guy like me. The sad part is that I can't blame my potgut on weak stomach muscles. I am just fat.

Only 20 pounds to lose, though.

Chronic Fatigue Syndrome

After 2012 (transplant performed 1/17/2012, very thorough preparation, including radiation, full body and brain), my problems with fatigue were much better. Really, I was doing somewhat okay even 6 months post-transplant, in summer of 2012.

I'd say throughout 2013 I had what I call "fatigue days" almost weekly, maybe every two weeks. I dragged, and trying to exercise just made it worse. On those days I had no appetite, and usually me energy and appetite both returned at the same time.

The fatigue days still happen, but more rarely, and often I can point to a cause, somewhere that I've overdone it physicall or mentally.

I can work 40 hours per week at a desk with no problem.

I own a distribution business. We moved our warehouse between Christmas and New Years, Dec. 25-30, 2014. On one of the first days I helped load pallet racks for three hours, pulling 10 pound to 30 pound boxes off pallets and handing them to someone else to put on shelves. I was very proud of myself.

I was useless the rest of the week. I definitely could not do an active job like that for more than 10 hours per week. Of course, I'm 53, and I haven't been able to exercise like a healthy person for three years now. Now that my feet are better and I'm responding to exercise better, that may change.

Eye GVH

I still have the occassional attack of eye GVH, but I no longer need any medication to treat it. I started expressing oil from my eyelids, and that has eliminated all suffering from GVH of the eye.

Dry Eye Zone expresses concerns about my method. It has staved off GVH to the point that my eye doctor said my eyes are fine and that I don't need to see her anymore. Therefore, I am going to continue, but I can't recommend that to you, anyway. The warm compresses suggested on that site are surely a better idea, anyway.

Okay, thanks! This update was mostly to provide a comparison for others of you wondering if you're ever going to get better.

Marrow Donors and Transplants

noreply@blogger.com (Paul Pavao) — Wed, 23 Jul 2014 13:44:00 +0000

I haven't posted on here in a long time. There are some leftover issues, of course, but leukemia/BPDCN is pretty much in the past for me now. My "new normal" is a whole lot like my old one except that I'm slower and can't run very far.

Anyway, some asked me about being a marrow donor, and this discussion of bone marrow or stem cell donation seemed pretty informative, so I'm posting it here, too, just in case you find it helpful.

How to Donate Marrow

Just go to marrow.org and sign up. They will mail you a donor package with lots of information. You swab your cheek, put it in, uh, something they sent you, and you send it back. That's enough to find out if you _might_ be a match. That's it. The likelihood they'll call you is pretty slim. If they do, then they'll want blood to check your DNA for 10-14 genetic factors. If you're an exact match, or really close, and you're the only one, they'll call you. Giving marrow is, literally, a real pain in the butt for about a week. "Feels like a mule kicked you in the backside," I was told. Nowadays, they usually take stem cells. They give you medicine for a week that makes your marrow run wild and its stem cells pour into your bloodstream. Your bones ache for a week, and then they take the stem cells out with a machine very similar to a dialysis machine, the ache goes away, and you go home.

That's the whole process, but only 1 in 500 people who sign up are called on as donors. It takes that much to find "the match." So, for the most part, your action is just to order the kit and send in the swab. Easy.

I know of someone who had 50 people come up on the list as potential donors. Only 3 turned out after blood tests to both be willing and to be a good match. One turned out to be a perfect match.

For me, they found 3 potentials in the whole world and none of them were a workable match after blood tests. My brothers were a complete mismatch, and my sister was the lowest acceptable match. Fortunately, nowadays women donate their placentas and cord (at some hospitals) and cord blood doesn't have to match near as well as adult blood. I got cord blood, which is usually not preferred, but for someone as harshly prepped as I was, the immature baby immune system that those stem cells created in me turned out to be a blessing. It's not as strong as an adult transplant, so it kept me a little safer.

Is this TMI? This process is amazing to me. Some people really need an adult transplant because the new immune system has to go in and destroy any lurking cancer cells. They thought I was healthy enough and had a good enough attitude that they would just use a scorched earth policy on every possible hiding place they could think of. The baby immune system didn't have anything left to clean up.

Sometimes there is a battle between what is left of the patient's marrow and the donor marrow. I have a friend almost three years after transplant who still has 2% of his own old marrow. Not me. I was 100% donor the first time they checked because they did an excellent job getting my marrow to 0% even before the transplant.

The New Normal Can Be Pretty Normal

noreply@blogger.com (Paul Pavao) — Sat, 10 May 2014 04:08:00 +0000

I think this last week is the first one in which being a transplant patient just didn't come up. Yeah, I got asked about how I was doing. I have a lot of friends who care about me, but I had to say, "I haven't thought about it."

I take my pills every day, though I hope for them to be reduced drastically on my next visit to Vanderbilt (in July). They are a reminder that something very difficult happened to my body. I still can't run very well. My sprint is a joke, and a quarter mile would be a long jog.

My feet are getting better, though. They burn, tingle and feel numb much less than they did a few months ago. My stem cell transplant doctor tells me that's because we're reducing the steroids.

Otherwise, I just go about my life. Every now and then I have a day where everything is difficult. I don't want to get out of bed, and everything I do is like slogging through swamp. Usually, I just cancel those days and hang out in bed. Nothing fixes it.

Those days are few and far between, though they do happen once or twice a month. It's only been two or three weeks since the last one. Nonetheless, nothing about my bout with leukemia (and especially the stem cell transplant, which was by far the hardest thing) has affected me enough for me to think about leukemia over this last week.

The burning in my feet kept the reminder alive for the last few months, but though they burn some now, and they swell if I sit too much, it's so minor now that I don't think about it. I have to sleep close to 8 hours for the swelling to go away, but that's a habit now.

Best of all, the exercise I try to do every day is finally working! I do odd body-weight exercises because I'm so weak compared to my pre-leukemia days, but now I'm progressing to more normal exercises (like pushups). I can carry groceries in without gasping for breath because of the exertion. I pick things up and move them around like I'm an adult male.

Actually, the strength part was pretty good in the last part of 2013, too. Pneumonia in January of this year sapped an incredible amount of muscle from me, especially considering I was only down for about two weeks. It's May, and I've finally got all my strength back that I had in December.

I work all day without thinking much about it, although many leukemia survivors, especially transplant recipients, never return to full-time work.

I am two years and four months past transplant, and I got a serious preparation for that transplant. I used up my radiation allotment for my whole life. If I ever get prostate cancer, like a lot of men do, there will be no radiation option for me. Radiation worked excellently for my dad. The surgery sounds pretty unpleasant, so my plan is to avoid prostate cancer.

Here I am, though. I'm kickin', everything seems to be working in my body, and I like the new norm. Physically, it's not much worse than the old norm, and in peace and wisdom, I am far ahead of where I would have been without that wonderful intermission in my life we call leukemia therapy.

I'll quit now. For the record, this is written for BPDCN and acute leukemia patients who are still going through treatment and wondering what they have to look forward to. Fight the good fight! Do everything right! You can come out on the other side of this much wiser and only somewhat beat up physically.

Exercise: We Can Do This!

noreply@blogger.com (Paul Pavao) — Mon, 17 Feb 2014 01:43:00 +0000

The 30-degree weather seems to have moved on. It feels like a warm, summer day, but the high 50's temperatures today are actually just average for February in west Tennessee.

I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.

Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.

So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.

Possible.

I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.

Nope.

I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.

I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.

Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!

Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."

I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."

One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.

Here's to a slightly less stimulated appetite and less muscle-eating steroids.

Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.

This sounds like complaining, doesn't it?

I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.

I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.

I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.

I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.

I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.

I may have been guilty of feeling sorry for myself at that moment.

Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.

I have not suffered, at least not much.

To Fellow BPDCN Patients or Survivors

Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.

I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.

So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a week, but it is not dangerous.

Well worth it to save a life.

Recovering Quickly

noreply@blogger.com (Paul Pavao) — Sun, 09 Feb 2014 07:44:00 +0000

I don't remember what day I went in the hospital with pneumonia. My guess is that it was 3 weeks ago today.

I did exercises in sets of 2-3 minutes several times today. I danced, I jumped, I did pushups (up to 7 now). I did some squats (with no weight). I did a little work on the car.

To put it mildly, I am surprised at my recovery. My lungs feel great. My stomach isn't all the way better. I had a mild tear, and I'm 52. That doesn't go away in a couple weeks.

Also, a few months ago, the ball of my feet started tingling and growing numb. Not long after that my feet and ankles were swelling up.

The doctors told me the neuropathy (I think that's what it's called) in my feet was the result of the steroids we transplant recipients take to suppress our new immune systems. They said the fluid buildup (the "edema") in my ankles and feet were also from the steroids. They never gave me any advice about what to do about it.

In December sometime, the swelling and a lot of the neuropathy went away.

I'm really hoping that as I get back into exercise, I'm also going to find out that my calves no longer start giving out about a hundred yards into a jog.

We'll see. I can't jog a hundred yards at the moment, but I'm sure I'll be able to next week. I don't have confidence, my calves will be better, but I do have hope.

Thank you for those who have prayed for me. I say that a lot, but I think it makes a big difference. Keep praying for others, too!

Pneumonia and Keeping in Touch with All of You!

noreply@blogger.com (Paul Pavao) — Tue, 04 Feb 2014 22:50:00 +0000

BPDCN and Counseling

I have gotten a lot of emails and comments on this blog the last couple weeks. I am reminded that there are people who are benefitted both by my stories and by the information on this blog.

I believe that most people in the world who are diagnosed with BPDCN (Blastic Plasmacytoid Dendritic Cell Neoplasm) contact me. A search for BPDCN will find this blog in the top 2 or 3 results almost every time. (BPDCN is pretty rare with only about 200 cases ever.)

I tried my own sun treatment on my skinny legs,
and my skin started peeling away.
Don't do that!

A couple months ago, I got a thank you from the uncle of a Lebanese man who wound up in France for his transplant. The uncle lives in Atlanta. Even though the uncle's family has not only lived in the USA for years and members of his family have served in the US military, the American consulate denied a visa to his nephew so he could be treated in the USA. Fortunately, France provided him with wonderful treatment.

It was a wonderful thank you letter because the nephew with BPDCN has now been released from the hospital ... just yesterday. One more survivor, at least so far. Terrific news!

There have been other not so pleasant situations. I got an email from the daughter of a man who didn't make it. It was a thank you email, too, for supporting her father through his cancer and treatment. Those letters rip my heart out.

Another person I walked through chemo with (by email) was the father of my daughter-in-law. I know all his children better than I know him, but I have known him for years. He's slightly younger than me, and he was in better shape. He had AML (Acute Myeloid Leukemia), which is not BPDCN, but is treated very similarly. He was a great trooper, made it to and through transplant, and then (in my opinion) got GVH (Graft Versus Host) of the lungs. That means his new immune system rejected his lungs and attacked them.

Note: That's how bone marrow transplants work. Unlike solid organ transplants, a bone marrow transplant (BMT) replaces the entire blood system, including all the white blood cells—our immune system. If a kidney is replaced, the recipient has to worry about his/her immune system rejecting the kidney. When we have a BMT, we have a new immune system, so every part of our body is in danger of being attacked.

Note 2: A stem cell transplant (SCT) is the same as a BMT. The difference is that rather than collect the actual marrow of the donor, doctors give the donor a shot that causess the marrow stem cells to multiply so much that they get into the blood stream. Those stem cells are then removed in a five-hour process using a machine very similar to a dialysis machine. Nowadays most marrow transplants are actually SCTs.

This friend/in-law of mine had lung problems with lots of names, but in the end I think it was his immune system attacking his lungs. He didn't make it. It was a terrible thing for the family, but I think especially my daughter-in-law. She had to watch me go through all the treatment, then watch her dad go through very similar treatment and not make it.

I am calling and corresponding with another man with BPDCN who lives only about 6 hours from me. It is such a delight to be able to warn of things to come, give advice, and just chat as a person who's been through what they're going through. He's in his second round of chemo right now. It's always nicer when the outcome is good, of course.

Update on Me

I actually have health news this time. I'm pretty sure it was Sunday, January 12, when I first got sick. I felt miserable, threw up once, went home, and slept it off. I felt better the next day, but I developed a slight cough. On Saturday morning, I woke up, and I knew something was wrong. I can't say I had symptoms bad enough to scare me, but I knew something was wrong. I woke my wife up and said, "I think I need to go to the emergency room."

We made it to the hospital with no problem, but by afternoon I was basically unconscious. I made it through their tests—EKG, x-ray, CT scan—without any real problem, but I went down so rapidly afterward that I don't really remember anything the rest of the day except struggling to roll over when they told me to.

They determined I had pneumonia. Plain ol' no-GVH pneumonia.

I went through leukemia treatments for 10 months away from home in Nashville. (Thank you again to Open Arms, the American Cancer Society, and the apartments we stayed at for providing a home for my family for free for the entire 10 months.) I have fond memories of the whole process, of the people I met, of the family time we had, and of the grace of God that carried me through the process.

I didn't have any grace for pneumonia. The three days of pneumonia was worse than the 10 months of leukemia. Maybe that's just because the leukemia treatments are almost two years in the past, but I don't think so.

I wondered if I was going to die. I wondered if I had squandered the extra time on this earth that God gave me, so he was taking away the second half of my life.

I didn't die. I went in on Saturday, and I went home on Tuesday. My ribs and belly were terribly sore from coughing, but my ribs healed right up over the next couple days. Friday, however, the right side of my belly went to hurting more than ever. It got worse until I had to ask my wife to take me, again, to the emergency room.

It turns out that the antibiotics had thinned my blood so much that my INR was 7.1. Here's what that means. Normal is 1.0. If your blood is 2.0, then it's twice as thin as other people's blood. My blood is supposed to be between 2.0 and 3.0 because I'm prone to blood clots. They give me Coumadin, a blood thinner, to make that happen.

However, the dose I'm on of Coumadin is about as low as they give to anyone. I should not have spiked to 7.1, a dangerously thin blood level. They blame it on the antibiotics; I was taking 3 different ones.

What happened is that with all the coughing, I actually tore my rectus abdominus muscle (the one that gives you a six-pack if you're not as fat as me). The tear was internal to the muscle, or at least to the sheath around the muscle, and with my thin blood I bled into the wound until it was somewhat pressurized. Hence the intense and growing pain.

They gave me a good dose of Vitamin K and it dropped my INR to 1.7 in one day. The bleeding stopped, my tummy began to heal, and they sent me home ... I think on Tuesday exactly a week ago.

I lost 20 pounds during that process. That would be nice, but I'm sure half of it was muscle. Starting over on strength training again! It was already a slow process!

Two or three days ago I thought I would jump onto the first step of my stairs and back down again a few times to keep taxing and clearing my lungs, and to begin the process of getting some of the muscle back that I lost in my legs.

I didn't make it! I couldn't jump onto a 6-inch tall step! Aargh!

I made it this morning, though, and was able to hop up and down 4 or 5 times. I had to start over on the pushups, too. I did four on Saturday, five on Sunday, and six on Monday. I probably have to stay at six for a while because pushups require your stomach muscles to stabilize your body, and I don't want to re-injure that muscle.

Well, enough about me. I'm recovering. I went to work yesterday. I jogged about 50 yards there, taking 2 or 3 little jogs to reach that extreme distance (#sarcasm). I climbed the stairs a few times. I feel alive again, even if my 11-year-old daughter would have no problem beating me up right now. I'd have the advantage for about 10 seconds because I'm still stronger and much bigger than her, but then she could do whatever she wanted while I gasped for breath.

That would be dangerous, too, because she's really flexible and getting stronger because she's learning gymnastics. She comes up to my chin in height, but she has no problem kicking several inches higher than my head.

Okay, enough about me. Sorry for not staying in touch more. I'm going to back through this post and add pictures now.

Is anyone getting stronger quickly?

noreply@blogger.com (Paul Pavao) — Sat, 19 Oct 2013 14:31:00 +0000

Yesterday at Vanderbilt, I read about a lady who had breast cancer. They had a picture of her, so I'm guessing she is about 50. Of course, the picture was of her competing in a bodybuilding competition, after chemo and in remission.

Inspired by her, I came down this morning to the kitchen and realized that I really didn't have enough energy to make coffee. In fact, I couldn't really think straight enough to decide on what to have for breakfast.

"My wife will do all that for me," I thought.

I laid on the couch. I took a few deep breaths, and they made me cough. "Rough morning," I thought.

As I lay there, my son, who is visiting from college for the weekend, runs up the stairs shouting to his sister, "I have so much energy this morning. I just went and did a bunch of pushups just because I have so much energy."

Wow.

Then he went out to the car with a friend to get a screen protector for his phone. I thought, "I should do something." I forced myself off the couch for a new workout I read about. It's a 3-minute workout. In this case, I chose deep knee bends. I do as many as fast as I can, then pause for 10 seconds, do it again, and try to keep that up for 3 minutes. I've never made it past two.

In this case, it totally energized me. My youngest son saw me gasping for breath, and he asked if I was okay, but all the deep breathing cleared up my lungs.

Usually, when I try exercise to kick the doldrums out, it fails miserably. I just end up in bed, unable to do anything. This morning, though, I'm up and typing this blog now, feeling pretty good.

Of course, my wife has made me coffee by now, along with a bagel with egg and cheese.

Question

So, my question is, if you've survived cancer, how are you doing at recovering energy, and what are you doing for exercise? How is the exercise working for you?

Exercise Story

I was feeling like my stamina was improving. I was walking on the treadmill at the gym and monitoring my heart rate. Over a couple of weeks, I had to go up in speed a little to keep my heart rate above 120. That was exciting.

Inspired, I walked several days in a row, and my body crashed. I slept all day one Friday, and then had little energy all day Saturday. I was on my feet most of that day, so I know it wasn't the result of being lazy and laying around.

So I have now limited myself to 3-4 days per week of walking 2 miles, keeping my heart rate above 120.

So here's the story. Last week, I decided to time myself walking around the block (big block). I started up the street, and I was quickly gasping for breath. By the time I rounded the corner and started down Strawberry Rd, I was wondering if I'd relapsed.

Really. I made myself come to grips with the possibility of relapse and be ready to give thanks to God in all circumstances.

Then I turned onto Dartford, which was downhill, and I realized just how uphill the start of walk must have been. My breath quickly came back, me feet felt lighter than they've ever felt, my heart stopped pounding.

The second lap, I took the uphill much slower. I felt MUCH better.

Earlier this week, walking laps at work, in the rain, I ran a little (very little) just because I felt like it.

Progress is SLOOOOW. But it's progress.

Again, I'd love to hear your plan, your success and lack thereof, and whether you're headed for a bodybuilding contest post-chemo or just struggling along like me.

The New Normal Is a Lot Like the Old Normal

noreply@blogger.com (Paul Pavao) — Thu, 03 Oct 2013 15:28:00 +0000

I was told to be prepared for the new normal. I had a good attitude about it. Leukemia, a slightly off version of Blastic Plasmacytoid Dendritic Cell Neoplasm (see tab above), chemotherapy, radiation, and a bone marrow transplant, and I was still alive. I'm a Jesus-follower. If my life were going to be marked by naps, day-by-day medical treatments, and a much slower pace, then it must be his will. All things work together for good for people like me, says the apostle Paul in Rom. 8:28. Life for me is about pleasing God. I'd like to do that without too much pain, but we all must accept the lot assigned to us unless God has given us the grace to change it.

I'm finding, though, that my new norm is not much different than my old norm except that I have to put on sunblock every day and exercise is nearly as effective.

I still am obsessed with work. My work involves not just running my warehouse in Selmer, and being a boss to the best crew of employees in the eastern United States, but also involves writing, which I love. I have so many writing projects that it is impossible I will ever get to them all. Thank God I have such a wonderful family, a lovely and enjoyable wife, and such a cute youngest daughter. (To my other children, you're wonderful, too, but most of you have moved out! Shame on you! Manu, you're not cute, just remarkably creative and becoming more responsible and reliable every day.)
I worked in the warehouse packing product a couple weeks ago. I only worked a half day, and I'm sure I was much slower than the younger guys, but it was apparent that I could have worked the whole day at that packing station.
I cover my arms, face, scalp, and neck in sunblock every day.
On a semi-regular basis I forget my past, stay busy from dawn to dusk or even later, and then, one morning, I can't get up. It used to take at least 24 hours to recover from such an episode, but now I'm usually okay by afternoon if I stay in bed all morning.
I have tried a couple times to get up, exercise, and thus overcome a "fatigue day" like that. Exercise is possible, and the ability to fall asleep standing up afterwards is impressive, but results have shown this to be a really bad idea.

The blisters, which I think I mentioned in the last post, went away within a few days of stopping my sunbathing program. I guess I'm going to be out of the sun forever.

My running program has been a disaster. For a while, I would run on the treadmill real slow (about 14 min/mile pace) for at least 4 minutes. I worked that up until I could run about 9 or 10 minutes straight, but it was torture. It was terribly painful, especially in my calves. After my last injury, where my left lower leg knotted up terribly and it took four weeks to get the pain out of my foot, my ability to run had dropped back to 2 or 3 minutes, still painful.

So I dropped that program as unsuccessful. Because we moved to Cordova (suburb of Memphis), we were able to get an inexpensive gym membership. I started to lift weights, and after six weeks I am very, very slightly stronger. That doesn't feel very successful, either.

But here's a program that appears to be working well for me. I was stunned on Sept. 6 that I was able to mostly walk, with a few 30-yard runs thrown in, a 5K in 47:18. That is under 16 minutes per mile. When I ran a mile back in June or July, I was only able to run it in 13:59, even though I ran the whole thing. The mile was really painful. This 5K wasn't really painful at all. It was hard, challenging, and I was sweating and breathing hard, but it was like a difficult workout, somewhat pleasant.

This gym has treadmills that keep track of my heart rate. I started walking at 2.6 mph (slower than 20 min/mile), and after a few minutes my heart rate would be up over 110. I sped up to 3.0 (exactly 20 min/mile), and my heart rate reached 120, which was my goal. Just over two weeks, I have had to speed the treadmill up to 3.4 to get my heart rate over 120. Clear, noticeable progress! There has been very little of that in my exercise programs up to now.

I'm sorry for those of you that have had a rougher route. I hope my story gives hope of things getting better, especially if you're careful about what you eat and stay active. Make friends; be outgoing. The statistics on the health of those with lots of friends and a few close ones versus loners are amazing. One study showed that loners were FOUR TIMES more likely to get a cold when a rhinovirus was dropped in their nose than those with strong social ties.

Why not be outgoing? If you have had a bone marrow transplant, and you can read this, you are a survivor. You have peered at death and walked away, probably not unscathed. You have a story to tell, and you are a conqueror. You have been victorious in battle, just like our soldiers in Iraq and Afghanistan and just like King David and so many other great warriors of the past. Hold your head high, make good use of your second life, and give everyone "what for."

And I'm thrilled for those that have done better. I'm still on daily Tacrolimus and steroids to stave off the rash that covered much of my body for over a year. My lower legs were completely covered in rash that entire time. Tamera is completely off her Tacro, and her last post said she's only been taking it once a week up to when they took her off of it.

Another GREAT story is Lexe Selman, who is PLAYING SOCCER FOR THE UNIVERSITY OF ARIZONA LESS THAN TWO YEARS AFTER BEING DIAGNOSED WITH AML. Come on. How can you beat that? I love her story. You MUST see the video and photos on her June 3, 2012 post. I cannot imagine playing in a soccer game between rounds of chemo, much less doing what she did.

Actually, yes I can. I could not play anything like my former self, much less like a young soccer star, between rounds of chemo, but I did play. Everyone was worried about me, but it was a lot of fun.

I remember a game of softball, after the transplant, when my thighs were skinnier than my knees. I had been walking stairs, so I could jog really slow. I hit the ball, thinking that I would surely remember that I couldn't run, but I didn't remember. My subconscious remembered the old days, commanded my body to take off, and my upper body was several feet down the baseline before my brain realized that I had left my legs behind. Somehow, I managed to turn sideways and roll as I hit the ground rather than faceplant.

I had someone run for me, even from home plate, the next time I came to bat.

Not being very smart, I went out and played soccer with teenagers and young men and women a couple weeks later. Same thing. "I have to beat her to the ball," and my body took off with my legs flailing behind me. I didn't roll, I sprawled. The moment when everyone looks at you and says, "You okay?" is pretty embarrassing.

Anyway, I thought y'all were due a little update. Back to the doctor on Oct. 11, when maybe I can go down on at least the steroids.

High Speed Catch Up

noreply@blogger.com (Paul Pavao) — Mon, 12 Aug 2013 02:26:00 +0000

I have to drive about 80 miles to work in the morning, so this is going to be a quick post. I am WAY overdue.

First, we moved to Cordova, a suburb of Memphis, which is why I'm driving 80 miles to work. I can telecommute 2 or 3 days a week, so that will work out okay, I hope.

I have met more neighbors in this partial week we've been here than I've met in my entire adult life (except at Rose Creek Village, of course). Tonight, I met the parents of an 8-year-old girl named Julia Cobb, who underwent a stem cell transplant (SCT) about 45 days ago. She doesn't have a blood cancer, like most SCT recipients. She has a type of "sarcoma." See Julia's story because I don't really know what that is except a solid tumor that started on her shoulder blade, was treated, relapsed, and then came back in several spots in her body.

I was so excited to meet them, and I really hope we get a chance to be a help to them. The father is a cancer survivor, too. His mother-in-law had exactly the same cancer, an intestinal cancer near as dangerous as pancreatic cancer, which is deadly. They went through treatment at the same hospital at the same time. He made it, and his mother-in-law didn't. Later his mother also died of cancer.

Nonetheless they were jovial. It was such a thrill to meet them, and to find out God put us three doors down from them!

Ok, real rapid update on me.

My treatment for my acute GVH, which worked pretty well, was to sun my lower legs and forearms, two or the worst rash areas, for 5 to 10 minutes per day. I have had almost no rash, rather than usually having rash an all my lower legs, half my thighs, a third of my trunk and on most of both arms.

Nonetheless, on Friday my NP--the wonderful and beautiful nurse Catherine--just about went into shock when I told her what I'd been doing. She hid it well, but she was horrified. She casually got the doctor as normal.

Dr. Savani came in saying, "We understand Dr. Pavao has prescribed a treatment, but we don't know this Dr. Pavao, and we don't think he is approved. So we are going to use the Catherine and Dr. Savani treatment. Haven't we warned you from day one not to be in the sun? Did we forget to tell you over and over to stay out of the sun?"

Seems I do remember that, but ...

He wasn't interested in "but." (I suspect he wanted to say "butthead.")

He explained that the danger is that I would move on to chronic GVH, and specifically a form of GVH rash called "sclerosis," in which my skin would harden like dry leather, restricting movement and being impossible to treat.

His lecture went on for a little while, and I sheepishly agreed to stop Dr. Pavao's treatment.

When we were leaving, my wife said, "It's possible they know some things about GVH and the sunshine that we don't know about."

I howled with laughter. Yeah, okay. I admit that eight years of medical school and years of daily experience with transplant recipients might give them a slightly better idea about sunshine and GVH than I have.

Otherwise, he said my blood counts are normal for a guy taking the medication I'm taking. He said I'm doing "100%"! (That should be pronounced with an Indian accent to get the effect.)

I don't get to drop my Prednisone (steroid) this time because of my sunshine treatment. Bad boy!

He also said, "No one can ever say 100%, but you are very unlikely to relapse."

So, I'm embarrassed but alive and apparently likely to continue to live ... if I stay out of the sun.

Alternative and Natural Medicine Rant

noreply@blogger.com (Paul Pavao) — Mon, 10 Jun 2013 05:31:00 +0000

After reading one more attack on the medical system from someone praising a good idea (eating nutritionally) and wishful thinking (that herbs cure cancer), I have to say something.

Admittedly, drug companies are out for profit. Despite this Ida-Rubicin, Vincristin, Cytarabine, Methatextrate, tacrolimus, prednisone, and other drugs saved my life. Zofran, Prilosec, and other medications made the treatment I required bearable. Those all came from pharmaceutical companies.

The reason that corrupt, money-hungry drug manufacturers save lives is because there is a scientific method and there are laws and agencies requiring the medical establishment to make every effort to follow the scientific method. It has its shortcomings, but because hospitals, researchers, and pharmaceutical companies have to report their results publicly, they are scrutinized, and we learn.

The result? A few years ago a guy with BPDCN-like leukemia, like me, was guaranteed dead in two years, probably less, and that only if he went through chemotherapy. Diagnosis to death for aggressive leukemias killed in an average of 6 weeks in the 1960's.

Because of a lot of research, we now know you can save BPDCN patients by giving them a bone marrow transplant. Only five or six years ago, such a transplant killed 30% of the recipients. This year, however, it is down to 5%.

FIVE PERCENT! People ought to be cheering them, not attacking them.

How did they do it? By expensive drugs? Partially. They always had the expensive drugs. They dropped the death rate from 30% to 5% by assigning only a few patients to one nurse practitioner. The NP diligently tracks the patient's health and gives advice, including nutritional, attitude, and lifestyle advice. The NP learns the patients, sees them often, and notices if a problem arises.

So let's compare that to alternative, natural medicine. I hope it's no surprise to you that I researched the dozen or so natural therapies that well-meaning friends recommended to me. What did I find?

Nothing. No records. No people that could be contacted. First names and user names with comments on web site. Absolutely nothing verifiable. I was insulted by one "camp" that promises turned around health in three weeks because I asked them if they had any references to prove their method worked.

Gerson Therapy has recently started releasing their records. Kudos to them. The results are not very impressive, but they do have results. Gerson Therapy, according to the Gerson Therapy web site, doesn't do anything for acute leukemia, so I quite researching them once I found out.

Everyone else? Nice claims. Wishful thinking. No evidence.

I once looked up the claims that a company called Lose Your Back Pain (I think) was making for an enzyme that you could take by mouth. They said it would relax your muscles, relieve pain, and help your back.

I looked up the enzyme on the PubMed database. It was there! Only one study, but the study concluded that the enzyme relieved pain and inflammation as well as ibuprofen.

The problem is, very few alternative medicine claims pan out like that. And when they do, the herbs or enzymes are sold almost as expensively as pharmaceuticals. A small dose of the enzymes costs $60/month.

People make excuses. "No one will study these herbs because they can't make money on them."

That is just not true. The last time I checked there were three ongoing studies on the efficacy of Pomegranate juice for preventing prostate cancer. It's hard to find a natural food claim that hasn't been studied.

I want to make it clear that I agree with the importance of good health. We could greatly reduce cancer, heart disease, diabetes, and many other diseases by eating more healthy and exercising.

However, it is ridiculous to claim that doctors don't know and don't promote healthy eating and exercise.

Miracle health, from drinking Acai juice, doing Pilates, or taking colloidal silver, is a fantasy. Colloidal silver, by the way, can permanently turn your skin gray if you drink too much of it. Oh, yeah, the medical establishment has studied colloidal silver, too.

It makes me angry that people with no evidence to back up their claims, and who have no intention of keeping track of the success of their claims, fire salvos at a medical establishment that has a lot of problems, but which has almost doubled our expected life span over the last century.

So Much To Talk About!

noreply@blogger.com (Paul Pavao) — Sat, 08 Jun 2013 22:26:00 +0000

The last post was named Nothing To Talk About, so I thought I'd name this the opposite as some sort of interesting pun, though now that I think about it, I can't imagine what would be interesting about that.

But it's an appropriate title.

Life's a whirlwind. I'm a writer, and it's not just this blog. I write the content for Christian History for Everyman and Proof of Evolution. I edit and upload the pages for A Brief History of Soccer. Well, I should say that I think about writing the content for Proof of Evolution. I don't have time for it.

I do have two blogs that I do find time for, though, this one and The Rest of the Old, Old Story.

I recently wrote a 40-page booklet called The Apostles' Gospel. I was supposed to do a final edit on it this last week, but I couldn't get to it. I spent all day Thursday in Nashville getting checkups at Vanderbilt, which I wrote about. Friday we were out looking at warehouses all day because our business has outgrown its current building, and we need to move. Between the heat and all the walking—one of those warehouses was like a small town—I was exhausted and had to cancel a teaching I was to do Friday night.

Today I edited an old booklet of mine called How To Make a Church Fail. It purports to be a discovered letter by Satan explaining how he got the church to compromise with the government in the fourth-century Roman empire. Call it an unusual form of historical fiction. I haven't read it myself in three years, and I loved it.

Okay, maybe that's a weird thing to say about my own book.

It'll be out on Kindle in no more than a month, I'm sure. My assistant and daughter-in-law, Dassi, is furiously fast at turning edited copy into a booklet with an incredible book cover. She adapted the terrific painting done for me by Jeremiah Briggs into the best cover I've even seen. Too bad's it on a 20-page booklet. On the other hand, booklets are cheap. The artwork on the cover will be worth more than the purchase price!

I've already started on a book called The New Law. It's only got eight pages so far, but the only review I've gotten was, "I'm so disappointed it ended there."

I have a booklet somewhat done that I found on my hard drive called The Gospel and Grace. I would love to edit that one, too, but I don't know when I'll have time.

In the meantime, I just sent an email today asking for Dassi's help on turning the "Yippee! I Have Leukemia" blog into a book. I've been meaning to do that for a year, but ... yeah, I haven't had time.

Thursday and Friday, the days I went to Vanderbilt and looked at warehouses, I spent free time on the phone trying to work out pre-approval for a loan so we can buy a house in Memphis. Friday afternoon, a customer with an Irish brogue came in and struck up conversation. It was great, but I got a phone call and questions from the warehouse staff during the conversation, and when I was done, I couldn't think straight. I was light-headed, and the world looked extraordinarily yellow.

Nothing To Talk About!

noreply@blogger.com (Paul Pavao) — Thu, 06 Jun 2013 18:19:00 +0000

I want to tell you about my checkup at Vanderbilt today.

I got some immunizations. I saw the Nurse Practitioner, lovely and charming Cathy, and one of my favorite doctors, Dr. Jagasia.

Yeah, my best checkup report ever. There is really nothing to report! In fact, there was so little to report, I forgot even to check my blood counts, which I usually do on my iPhone before Catherine ever comes in the room. (What do you call a room like that? A seeing room? A patient room?)

But I'm going to chat anyway. Thanks to all those who have said they are interested in my inane ramblings.

Conquering GVH of the Skin

I've been training—doing squats, sprinting, jogging, walking, playing soccer—in vain hopes of legs of steel. Today, I was happy to have legs of pale, human flesh, rather ordinary except for the large amount of varicose veins around my right ankle.

Today was checkup day. Usually Vanderbilt likes to give me two months between appointments, but I had a May appointment due to the large amount of GVH rash I had. For the last week, though, I've had no rash at all.

No rash at all.

My lower legs have been covered with a red, bumpy rash—that doesn't itch or bother me—for as far back as I can remember. At least 8 or 9 months. The rest of my rash comes and goes, but I have always been able to count on my entire lower leg being covered in rash except the upper calf area.

I still can't reveal the new treatment that I added in late April, which produced immediate results. Afterward, circumstances prevented my added treatment for a couple weeks, and the lower leg rash was still pretty bad for my appointment in early May.

Between then and now, though, circumstances have changed, and I have been pretty diligent with my secret treatment. The result has been no rash on my entire body, even though I've only been treating my lower legs.

However, since I don't care to tell my awesome care team at Vanderbilt about this secret treatment—yet—I can't tell you, either. I need more data.

So I go back in two months, August 2, for another checkup. If we have managed to stay GVH-free between now and then, I will reveal my treatment to them and face my just desserts. They're such nice people, I really don't want to kill them with astonishment. Nor do I want them to choke me to death for trying it.

So I have to have a lot of success under my belt.

My New Exercise Goal

I have a new goal. Remember in one of the last posts I told you I ran a whole mile, but it took me 13:56 to run it?

Well, the very next day someone told me that a friend of mine has been out jogging with her two children, and they ran a 14-minute mile with her. I blinked a couple times in silence, and then I asked, "How old is Tanaya?"

Tanaya is my friend's daughter.

She is 4.

The day after that, I saw my friend, her son (Jaden), and Tanaya come running in the gate of our village. My friend was pushing a baby stroller while she ran. Jaden and Tanaya ran casually beside her, clearly not tired. Jaden is 7 or 8 years old.

I tried to decipher the scene in front of me.


Yep, that's her (photo by Ashley Hartle)

People from our village run on that road all the time. If someone is coming in the gate of Rose Creek Village running, then usually they have either run to the end of Lola Whitten (2 miles), or to the end of Rose Creek Road (4.4 miles), or around a loop that we call the King Road loop (6 miles). (Or sometimes back from my warehouse, which is about 15 miles.)

I'm pretty confident that Abby would not have run with three children down Rose Creek Road, so I'm guessing they only ran two miles.

I looked at Tanaya's smooth, casual stride, the turn of her head—both sideways and upward—to impart some bit of adolescent wit to her mother as she hit the end of her 2-mile jog, and I realized that this 4-year-old girl, over which I had a 4-second advantage, had surpassed me; indeed, left me floundering in the over-sized wake of her success.

So today, on the way to the hospital, my wife read a social network post from Tanaya's mom. "The internet results show that Jaden and Tanaya ran 10:57 for that mile!" (paraphrased)

I was depressed. My wife assures me that I can catch her.

I'm thinking, well, by the time Tanaya is 11 or 12, it's going to be hopeless. I'll be 60 or so and slowing down. However, if I can make some real strides (no pun intended) in the next three or four years, a 55-year-old guy ought to have an advantage over a cute, but 4-foot-tall, munchkin.

So that's my new goal. First, catch up to Tanaya's standard right now, which will take at least six months, probably a year. Then apply my extensive knowledge of speed training to this tired, beat-up old body, and I ought to be able to compete if I don't let her get much over 4 feet tall.

I got a nice email from Tanaya's dad, Nathan. He told me his family only ran one mile that day, and he also corrected my spelling of Tanaya. He told me he doesn't know if he'll be able to keep up with Jaden, who has run backward in order to slow down enough to stay with with his little sister.

Another anecdote: Before all this, my wife saw Abby racing up the hill towards here house at full speed. Worried, my wife sent her a text asking if everything was all right. The answer? "Everything's fine. It's just that if I don't work on my speed, Jaden's going to outrun me real soon."

Final Note

Well, that's my fun for the day. I am so excited to go in, see the doctor, and feel like a normal person getting a checkup. I never imagined that could happen this soon!

I'm still on immunosuppressive medications that help make that result true. We are tapering off them very, very slowly. Why?

Cause that's the way we run.

Life as a Leukemia Surivor

noreply@blogger.com (Paul Pavao) — Thu, 30 May 2013 14:37:00 +0000

I am a leukemia survivor. People tell me that I am an unusual one.

This post is written specifically because I'm worried that yesterday's was boring, even though I felt like it was essential to write those things for the sake of other survivors who might need to see how others did.

Today's ... well, it won't be.

I was given permission by Vanderbilt Medical Center to move away from the area in early May, 2012; just over a year ago.

Here was the story at that point:
May 1: "When [the EMT] 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."

The bandage that squirted when peeled.

May 10: We moved back to Selmer from Nashville.

May 30: "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."


This is how I had to dress for softball, too

June 13: I was still losing weight. I was 130 pounds, down from 190 before the transplant, and the chemo lines on my fingernails were growing out:

The scrawny dude

chemo-lines; one grown to the end, the other halfway

Being scrawny gave me some good stretching abilities!

Life as a Workaholic Leukemia Survivor

That sorts of sets the stage for where I was one month after returning to my home in Selmer.

In that condition, I returned to work. I run my own business, so I was able to set my own hours. I had to stay home and rest about one day per week, and hemorrhoids would be an ongoing problem throughout the summer.

So what would you do?

I rented a building in Selmer and tried to start a coffee shop.

Understand the scenario. Our church owns the building in Selmer, and they tried to do a coffee shop in 2011. It was almost successful. I really believed the problem was that we had a terrible sign, and there was no way to really tell what the building was being used for. Also, we had no advertising budget, so there was no advertising, either. Just word of mouth.

So I rented the building and tried to do it right. I advertised in the paper. I put a good sign on the front of the building, and I tried to run it with my daughter and a friend.

Front of the Selmer Buzz

Run it? I was already working, and I was taking naps at work on my office floor to do so. I was trying to catch up from 10 months of being in Nashville away from the office. The worst part was trying to catch up from the four weeks I didn't even eat, much less look at emails and texts.

I don't just have a warehouse business I was running, but I maintain four web sites besides this blog.

Why was I starting a business?

It seemed right. The building was sitting empty, costing my church money. I really thought I could make it work, and I was looking forward to using the building for seminars and other educational events that would benefit the community.

People suggested that maybe I was overdoing it. I acknowledged they might be right, then went on about my business.

The Day

Then came "The day."

I don't remember what day it was. I think it was in August.

We were open in the afternoon, but my daughter was unavailable to work for some reason. I tried to get hold of the friend who was helping me, but I couldn't reach her, either. Finally, I got my secretary from work, and I went down to The Selmer Buzz, as I was calling the new coffee shop.

Our advertising and sign hadn't worked at all. Business was incredibly slow, and we certainly weren't making any money. We did have one very successful seminar on health care reform, but otherwise, pretty dead.

It was not a good day for me. Back then I called those "fatigue days." Usually, I just stayed in bed all day. I'd been told not to fight those days. They always win. Today, however, I couldn't do that. I had to open the coffee shop.

I remember the time frame now. It was late October, early November, 2012. I had jogged for 3 or 4 minutes one day a couple weeks earlier, an extremely long run for me at the time. The next day I had run, then walked, 20 or 30 yards each, for a mile. That was really tiring. The day after that I went on a 4-mile walk with my family at a local park, much of it on hills. I was hobbling by the end, as was my daughter, who had injured her knee.

Exercise is supposed to help prevent blood clots, but I suppose overdoing it can make them happen. I got a blood clot in my calf so bad that I couldn't stand for longer than 5 minutes at a time. The pain in my calf would build and build as I stood, then begin to relieve if I could sit down and get my leg elevated. I brought a wheelchair to the coffee shop so I could get around with my leg up.

In that situation, on a fatigue day, I went to the coffee shop with my secretary from the warehouse so she could help me run it. I showed her how to the run the espresso machines and the "cash register," which was really a program on the Selmer Buzz' iPad.

Then, exhausted, i went to take a nap in the back seat of my car. I covered myself with a sleeping bag, and then realized that my toe hurt too much for me to sleep.

I have always been prone to ingrown toenails, but rarely have they been bad. I had chemo lines on them now, though, and the toenail was brittle. It had broken, and when I looked at my toe, I realized how bad the ingrown toenail was.

I don't remember which of these chemo lines gave me the problem.

Sighing and longing for sleep, I got out my toenail kit, which I carried with me at all times due to my finger and toenails constantly breaking or crumbling. It was agonizing, but I got my toenail as cleaned up as possible, and I got some Neosporin on the bleeding side of the nail.

My toe was throbbing, and it was trembling like a hurt puppy. I figured the pain would wear off pretty quickly, so I laid back under the sleeping bag, leaving my foot bare. I took a deep breath, and ...

Tap, tap, tap.

I looked up at the window where my secretary was tapping. I unlocked the door, and she opened it.

"There are four customers in there, and the espresso machine blew apart. I don't know how to work the other one."

My heart sunk. I was so tired. I couldn't imagine getting up. My toe was throbbing, and my foot was cold.

"I don't know if I can make it," I told her.

She went back in.

I pulled myself up, then I pulled my sock over my still trembling toe. I loosened the laces on my shoe, and I pulled it on my foot. Then I hobbled into the coffee shop through the back door. My calf started to throb as I got inside. My toe was already throbbing.

I smiled and greeted the guests, and I went to our new espresso machine. We weren't using it because my daughter didn't like it. I knew how to use it, but I'd only used it a couple times. Being distracted by pain and trying to take care of the customers, I quickly reached down and pulled the cap I would have pulled on the other machine.

Steam blasted across my hand. The pain was instant.

I jerked my hand back, looked at my secretary, smiled, and said, "Oops."

Amazingly, between me and her, we got the lattes out in a couple minutes. I had been standing the whole time. Pain was shooting through my calf and making its way up into my hamstrings. I looked at my secretary and said, "I'm going to bed now. I hope we have no more customers."

I grabbed a soda can on the way to the car so I'd have something cold to relieve the pain in my burnt hand. I hobbled quickly to the car, needing to get my leg in the air to stop the pain in my calf.

In the car, with the cold soda can pulled under the blanket with me, I uttered one prayer before I went to sleep. It was pitiful. "God, please stop hurting me." That's the last thing I remember.

The next day I closed the coffee shop.

December, 2012

Obviously, I'd learned my lesson. I needed to rest. I'm a former leukemia patient, but still a recovering one.

The blood clot cleared up and stopped causing me pain in November. So in December I drove with my four youngest children to California for a vacation. My oldest son lives in southern California, in Riverside, and my brother lives in Sacramento, as do some "missionaries" from our church.

My oldest daughter, just turned 17, was diagnosed with the flu right before we left. She threw up regularly throughout the first two days of the trip.

Funny, though, despite my depressed immune system, I didn't get sick. Neither did anyone else in the family.

The weather had been in the 40's and 50's and drizzling for at least 2 or 3 weeks before we left. We were looking forward to the drive across the deserts out west.

When we got to southern California, the weather was in the 40's and 50's and drizzling.

I was cold all the time. I liked nothing better than curling up under blankets with a ski cap on, breathing down into the blankets to keep them warm.

My skin was also incredibly dry. It flaked everywhere. I was constantly having to brush it off my clothes. It was like I had dandruff everywhere, especially my face. To combat it, I applied a strong moisturizing lotion over most of my body twice a day. It was cold to put it on, and the moist layer on my skin just made me colder than I already was. It was also horribly time-consuming, as I also had to apply steroid cream to my skin twice a day.

I froze every time I had to apply the lotion or cream. Then I would be cold afterward, and I was cold all the time anyway. I missed a few applications of the steroid cream because I couldn't bear it, and I returned to Tennessee, driving, with a GVH rash over most of my body.

February, 2013

I tried to rest through January, but at the end of the month my son called from California.

"Hey, mom and dad, I'm getting married."

"That's fantastic, son! When?"

"February 10."

My wife said "Great!"; I said, "Isn't that in 11 days?"

It was. Amazingly, we found one very well-priced flight for February 8. Back out to California we went.

This kind of "rest" turned out to be very effective. I had a big increase in energy about that time. No kidding!

March, 2013

March brought spring break. We planned a vacation with the kids to Gulfport, MS. We would take them to the beach.

Then a friend called. He was coming down from New England. Could we meet him in Virginia Beach, Va on the 15th?

Sure, we'll just drive, uh, 14 hours, then come back, pick up the kids and go to Gulfport a few days later.

The trip to Virginia Beach was spectacular. We stopped along the way to visit another friend we know in Virginia, but we made a wrong turn and ended up on a narrow dirt road, climbing a mountain with a drop on both sides. My wife was driving at the time, and we were both terrified. When we got up the mountain, I got out of the car to ask someone for directions, and I was bitten by a dog.

By the time we got to Virginia Beach we had been on the road closer to 24 hours.

When we left Virginia Beach, we chose a highway through Norfolk. We hit Norfolk at rush hour due to poor planning. But it was not just rush hour. There was also construction on the east and south exits out of the city. Traffic was literally at a standstill. We gave up, parked, and went to a mall. This time it was my wife's turn to sleep in the car. She was too tired to shop or drink coffee.

Once we made it back, much slower than had been planned, we got ready for our vacation to Gulfport.

But wait! A pianist with whom my wife is familiar was coming through our town, and he could do a concert if we could arrange it! The only available day was the Wednesday of the week of spring break.

We made a change of plans. Only two nights down in Gulfport, then race back for the concert, then off to the space museum in Huntsville, Alabama, which is only 3 hours away.

Great plan, except our car broke down in Gulfport. We took it to a mechanic, but he couldn't fix it. It's a Lincoln. It's an older Lincoln that I got for $2250, but it's losing functionality because all the parts I need to repair it cost more than the car is worth. (Okay, that's a slight exaggeration.)

Off to the dealer it went. Off to the dealer in Gulfport, MS, that is, and since the first mechanic had the car for a day, we no longer had time to pick it up. We had to go back to Tennessee for the concert. We rented a car and headed home.

The return of the car at the end of the week, after the space museum in Huntsville, went without incident. The trip was not 3 hours, since we had to drive to Gulfport from Huntsville, a good 6-hour drive, then an 8-hour drive back to Selmer, but our Lincoln was fixed. The dealer had even fixed it inexpensively. Amazing.

April, 2013

April saw us flying out to California again!

There was a Bone Marrow Transplant Information Conference in Costa Mesa. Two days of doctors, seminars, questions and answers with BMT specialists, and meeting fellow blood cancer survivors. I really wanted to go.

Just for fun, we threw in another trip to Sacramento by car. Another 8-hour drive. We rented a tiny car that got 40 miles per gallon, and we gallivanted around California for a week. We even drove the Pacific Coast Highway coming back from Sacramento. We took pictures and exhausted ourselves, then arrived at our hotel the night before the flight at 11:30 pm. Fortunately, we had a non-stop flight that didn't leave until early afternoon.

May, 2013

We flew out of California on April 30. On May 2, two days later, I spent the entire day in Memphis at a writers guild and meeting friends. The next day, we spent the entire day in Nashville for doctors' appointments. That was Friday, and another week was gone without an appearance at my warehouse.

The following week was a blur of catching up.

Did I mention that we are outgrowing our warehouse? So we are not just performing business as usual. I am also going out with my warehouse supervisors to look at larger buildings.

A Typical Day

On a typical day I get up between 6 and 8 a.m. It takes over an hour to get ready for the day. I have several prophylactic treatments I do every morning, including checking my big toenails for fragmentation and cleaning them with alcohol. I have to steroid cream my entire body every morning, too. Sometimes there are other things I have to do, depending on the condition of my stomach. Breakfast is not optional, but mandatory so that I can take my morning meds without throwing up.

Usually the morning is filled with internet stuff—answering emails, writing blogs, marketing online, working on a book—which I often do from home. I leave for work before lunch. Often I have to stop on the way for refills on medication, either from the pharmacy or from the grocery store.

I get to the warehouse between 10 and noon, depending on the errands I needed to run and how long I was writing. If it's before noon, I check my to do list, then check on the people. One of my main jobs there is to make sure it's a positive work environment. I take lunch with the warehouse workers, and if I'm lucky they'll have room for me to play soccer with them the last few minutes of lunch.

After lunch I face the torrent of things that come my way. If there's problems at the warehouse I handle them. Accountants, meetings with supervisors, website and book planning with my daugter-in-law, church meetings, salesmen. There are never enough hours in the day, and it's always a temptation to hang around the office late—a temptation I'm careful to rarely let myself fulfill.

Most of the projects that pile up and demand my time are web site and writing projects. I have four main web sites and two blogs, including this one. Between them they got over 2000 unique visitors per day and over 4000 visits per day in April. Since that's 1.5 million visits in a year, the writing seems worth it. I always wanted to be a writer, but I could hardly imagine well over a half million unique readers of the things I write.

My web sites, by the way, are:

Christian-history.org
Revolutionary-War.net
Proof-of-Evolution.com
History-of-Soccer.org

I only write the first and third of those. My daughter and daughter-in-law have written most of the Revolutionary War site, and my daughter-in-law, Esther Pavao, has a booklet called Slavery During the Revolutionary War that is available on Kindle!

My son and some college friends write the pages on the soccer web site. The fullest section of the site is its famous players section.

17 Months after Bone Marrow Transplant, GVH, and Recovery

noreply@blogger.com (Paul Pavao) — Sat, 25 May 2013 03:40:00 +0000

It seemed like a good idea to give an update on recovery.

I am almost back to full strength. I work out most days trying to achieve that. I still can't do a pullup, but I can do 20 decent pushups, and 13 or 14 excellent ones. I can press 65 pounds overheard 10 times. I used to be able to do 75 pounds for 15 reps. I was pretty average strength before leukemia. I was hoping maybe the baby's blood system I received might make me suddenly prone to great strength, but it doesn't look like it. It's taken over a year to get to doing 20 pushups!

Of course, last May I could barely hold myself in a pushup position, so I guess that's not terrible.

I ran a mile straight without stopping last week. That was a great achievement for me, a real "mile"-stone, my wife called it. (Funny girl.)

It took 13:56, which is really slow. On a treadmill, it would have been a 4.3 speed on a treadmill. A real fast walker could have kept up with me. Still, it was hard, very hard.

But I did it.

So I waited a couple days to give myself a rest from my "marathon," and then I tried one time around our warehouse at work, which is about 1/5 of a mile (not a standard distance at all). I was just hoping to get around the warehouse in 2:15, but I just took off at what seemed a pretty fast running speed and hoped for the best.

Halfway around the building, which took about 45 seconds, I still felt great. I couldn't believe it! 3/4 of the way around the building, it was a huge chore to keep running, and my pace slowed terribly. I'm sure I looked like I only had partial control of my body. So I slowed to my mile jogging pace I'd used a couple days before and sort of shuffled to the end.

One minute and forty-eight seconds!!! Whoo hoo!

That's 9:00/mile. In fact, since it's really a bit more than 1/5 of a mile, it's less than a 9:00 pace. That's a decent jogging pace, not a run, for a 51-year-old that's in shape. Six years ago, I could run 8 miles at that pace. Today, I can only do 1/40th of that distance, but I was THRILLED.

GVH & Medication

GVH is Graft-vs-Host disease. I should have a tab at the top of the page with the others for what that is instead of defining it over and over again. If you're still reading this, you probably already know what it is. If not, stay tuned, and within the next week, I'll do a GVH page for this blog.

I've had an ongoing skin rash that has varied in strength. My doctors, and the doctors at the Bone Marrow Transplant Information Conference that I went to in Costa Mesa, CA in April, told me that my rash is acute GVH of the skin. It used to be that if you had a skin rash due to GVH more than 100 days after transplant, they called it "chronic." Before 100 days, it's called acute, and it's considered more dangerous, but less likely to be continue. Chronic is less aggressive, but it's more likely to linger.

Mine, however, is still acute, a year and a half after transplant.

I have no idea whether that matters much.

I do know that either way, the doctors play with an immune suppressor like Tacrolimus and a steroid, like Prednisone, that works differently than the Tacro, but also suppresses the immune system. My rash had gotten bad enough that in April, they had doubled my Tacrolimus dose and increased my Prednisone to 30 mg, even though they thought the 20 mg I was taken were not good for me.

We also use a steroid cream called Triamcilone 2-3 times per day over my whole body. We started that regimen early in April, and it took the whole month to get the rash under control. Usually, when they try increasing my steroids, we can get everything cleared up except my forearms and lower legs, and my lower legs are much worse than my forearms. In late April, I added another treatment, which I am not ready to reveal yet, and my lower legs cleared up as well. We were thrilled!

So this month, on May 3, they dropped my Tacro back to 1 mg and had me drop to 25 mg of Prednisone. I was very diligent with the Triamcilone cream, and after a week. I was still clear. A week ago, they had me drop to 20mg of Prednisone, and the rash came back lightly on my lower legs. We were still thrilled it wasn't progressing, and in the last couple days, it cleared up again!

I am, however, facing some gut issues the last couple days, with a lot of bowel movements, though no diarrhea. Today, my stomach added a lot of burping that doesn't smell very good. In fact, I was driving my kids to town this evening, and when I burped, we had to roll down the windows to blow the smell out.

That could be GVH, too. I wrote to Vanderbilt using "My Health at Vanderbilt" online, which puts my emails right into my medical record, but they won't look at that until Monday. If it becomes an emergency, I have to call to get them on weekends.

GVH of the Eyes

I didn't get any GVH of the eyes until November or December (10 months out from transplant). It was pretty bad for a while, but it seems to have mostly subsided. I wrote a blog telling about pressing on the inner corner of my eye to relieve the GVH attacks. It's still working, and basically I hardly ever have one now. I can drive without sunglasses, read, watch a movie, and type on the computer without problems. I'm still pretty sensitive to wind or a fan blowing, and I had one GVH attack initiated instantaneously by a sudden bright light a couple days ago. Pressing the corner of my eye got it under control, though.

The Future

During the treatment for leukemia, things were pretty difficult most of the time, so it was all pretty interesting in and of itself. It was easy to find things to make jokes about, so it was easy to keep the blog an enjoyable read. This post was a bit more difficult. I wrote this for the sake of others going through the same thing I am so they can compare progress and maybe be encouraged that things that seem to go on and on can actually come to an end. I know I was wondering about the rash on my lower legs.

Maybe in a future post I can tell you the kind of days I have, being a workaholic, swamped father, husband, and Chrisitan teacher, while trying at the same time to be a peaceful, praying man who lives by the Spirit of God. There's still plenty of humor in that pursuit!

Maybe even some encouragement.

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Study

noreply@blogger.com (Paul Pavao) — Wed, 08 May 2013 14:51:00 +0000

I learned from an email that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) is also called Plasmacytoid Dendritic Cell Leukemia (PDCL). It's been called a lot of things in the past, including Blastic Natural Killer Cell Lymphoma, which is a pretty cool name for a very "uncool" disease.

Anyway, I wanted to summarize a study published about 6 months ago, on November 30, 2012. It was published online at that time, then published in Blood Journal on Jan. 8, 2013. You can read the whole study on that link.

Thank you to Michael Oldtree for posting the link on rareshare.org for other BPDCN patients.

Basically, Damien Roos-Weil et al analyzed 34 BPDCN patients who had received stem cell/bone marrow transplants from a sibling or unrelated donor.

The blood cells. The cell that stopped maturing, then multiplied uncontrollably, determines the type of leukemia. Notice the difference between Myeloid and Lymphoid cells, which makes the difference between Myeloid and Lymphoid Leukemias. The Plasmacytoid Dendritic Cell is a myeloid cell, which may be why BPDCN is treated like AML.

Here's the results, short and simple:

This was an analysis of treatment results, not a study where the researchers treated the patients themselves.
Ages were between 10 and 70 years old.
They separated the patients into two groups, those under 42 and those over 42.
There was no significant difference in survival rates between the older and younger group.
The sample size was only 34 people. The disease is quite rare, and there have only been about 200 cases ever.
The disease-free survival rate at 28 months was 50% for those that received a full-strength preparatory regimen.^*
All of those who received a reduced intensity preparatory regimen died of complications or relapse.^*

^*A full-strength preparatory regimen, by the study standards, was at least 8 Gy of radiation and at least 10 mg/kg of bisulfan or 150 mg/m2 of melphalan. Anyone who gets a bone marrow/stem cell transplant is told whether they are receiving full-strength (myeloablative) or reduced intensity (non-myeloablative) conditioning.

Discussion of Results

The encouraging thing in this study is that BPDCN, that used to be known as having a 0% survival rate may possible have a 50% survival rate, if the patient is healthy enough to withstand a myeloablative marrow transplant.

The discouraging thing is reading that none of the patients they looked at who received reduced-intensity conditioning survived. They all died of relapse or complications. The sample-size for the reduced-intensity patients was very small (10, I think).

The study calls for more research on the ability of the new immune system (a new immune system is one product of a marrow transplant) to destroy any leftover leukemia and prevent relapse. This is called Graft-vs.-Leukemia, and they would study this by examining relapse rates for patients who received non-myeloablative conditioning. They would also study the relapse rates for all transplant recipients based on how much Graft-vs.-Host they experienced.

Graft-vs.-Host means that the new immune system is attacking the patient's body, which happens pretty often because the immune system and the patient's body have different DNA. (Yeah, the DNA of my blood is different than the DNA of my skin.) GVH is a bad thing in one sense, but it's also a good thing in most types of leukemia. An immune system that is aggressive like that is more likely to find and destroy any leftover leukemia cells that managed to survive the chemo and (sometimes) radiation used to prepare the patient for transplant. Thus, the relapse rate among leukemia patients in general is lower for patients that experience a small amount of GVH. A large amount of GVH is life-threatening, and dying is no good way to prevent relapse!

This study is saying, however, that they don't have evidence that Graft-vs.-Leukemia is effective in BPDCN patients, though they don't have a big enough sample size to confirm ineffectiveness. And that is a question we really need to answer! There is no sense putting patients through non-myeloablative transplants if they are not going to be effective. Of course, how are we going to find out if we don't try. Usually, non-myeloablative transplants are only used on older or weaker patients who might be killed by full-intensity regimens.

One final note: I'm not actually a BPDCN patient. I was diagnosed with BPDCN by a lab in California. The lab at Vanderbilt Cancer Center, however, was not willing to confirm the diagnosis. They could not come up with an alternative, either. They ended up calling my leukemia "undifferentiated," which means, in my case, they really didn't know what it was. They treated it like they would BPDCN, which means that I got a chemotherapy designed for Acute Myeloid Leukemia (AML) and a fully myeloablative marrow transplant was required as soon as I got into remission. Waiting any longer than 6 to 9 months would have just about guaranteed a drug-resistant relapse that would prove fatal. (Due to complications, we had to wait 6 months, and everyone was in a hurry at that point.)

News on Progress with T-Cells Against Leukemia/Multiple Myeloma

noreply@blogger.com (Paul Pavao) — Mon, 06 May 2013 17:27:00 +0000

The article is here:

Souped-Up Immune Cells Force Leukemia into Remission

Note: There is a YouTube video explaining the same story linked in Todd's comment below.

Scientists are working miracles with T-cells, and some of it is thanks to the HIV virus. AIDS, as you know, is an immune deficiency. It is caused by a virus that attacks T-cells, a major part of our immune system.

Scientists have captured the HIV virus, and they have made a slave of it. Viruses are how scientists got DNA into cells. We can't really put genes into DNA on our own, but putting genes in DNA is how viruses work. So scientists have disabled the HIV virus so it is not dangerous, but it can still weasel its way into T-cells. Viruses are almost nothing but snippets of DNA (it's questioned whether they qualify as "life"), and scientists add some DNA to the virus, then let the virus carry it into the cell.

If you want to fully understand the illustration below, you can read the following incomprehensible paragraphs. I thought, though, that we all might be able to understand the illustration a little just from the title of the extract.

"Schematic Representation of the Key Structural Features of SIV and HIV-1 Entry into T Cells"

(A) Different stages of viral entry from budding, to maturation, to entry claw formation. For the SIV strain used here, viruses that are docked to the cell via an entry claw show very few, if any, viral spikes on their surface, whereas non-contacting viruses typically display between 60 and 100 spikes on their surface. The entry claw is composed of between five to seven anchors spanning the region between the virus and the cell, each ∼100 Å long, and spaced laterally by ∼150 Å.

(B and C) Two alternative models for viral entry. In the global fusion model (B), the formation of the entry claw is followed by progressive fusion of the viral membrane across its width, leading to merger of the contents of the viral membrane with the cellular membrane. In the local fusion model (C), the formation of the entry claw is followed by the creation of a local pore centered at one of the rods, leading to delivery of the viral core into the cell."

By Rachid Sougrat, Alberto Bartesaghi, Jeffrey D. Lifson, Adam E. Bennett, Julian W. Bess, Daniel J. Zabransky, Sriram Subramaniam [CC-BY-2.5 (http://creativecommons.org/licenses/by/2.5)], via Wikimedia Commons

As far as what I've read, scientists have been able to do two things with the HIV virus. In patients with Chronic Lymphoid Leukemia that would not respond to any conventional treatment, they engineered the patients T-cells to kill B-cells, which are another immune system cell. In these CLL patients, though, the B-cells are the ones that became cancerous, so when the T-cells killed the B-cells, they also cured the cancer.

The side effect is pretty major. Those patients will never have B-cells again, and they require immunoglobin injections to help boost their immune system. Nonetheless, their immune systems will be weak forever.

In the article above, the patients were Multiple Myeloma patients (related to leukemia because it is a blood cancer, but it is not leukemia despite the incorrect title of the article), and scientists engineered the T-cells to target the specific cancer cell causing the MM. They had some success putting the patients in remission, but since standard therapy was also being used, the power of the T-cell therapy is still unknown.

As an aside, Christian singer Carman Licciardello, who just goes by Carman on his albums, was recently diagnosed with Multiple Myeloma. They told him his MM is incurable and that he'll die in 3 to 4 years. The article above applies directly to him.