Saturday, April 13, 2019

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!

Saturday, May 26, 2018

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.

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.