Wednesday, December 30, 2015

Back to Full Health

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.

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.