Friday, October 2, 2015

Neutropenia Forever?

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.


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

Monday, May 18, 2015

Neutropenia Is Now Good News!

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.

Sunday, May 17, 2015

Nothing But Neutropenia

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.


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.

Wednesday, December 10, 2014

Diffuse Large B-cell Lymphoma with Myc rearrangement

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!

Tuesday, December 9, 2014

A New Cancer: Lymphoma and Faith

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.

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