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.

Yikes!

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

13 comments:

  1. God is with you and you are such an encouragement in the struggles and victories of life. Thanks for sharing. <3

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  2. Thank you, Haviy! I'm just following the path you and your husband carved out for me.

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  3. Strange I was just thinking about you and wondering how you were. I contacted you once about a friend dx with BPDCN, sadly he didn't make it after enduring horrific chemo and transplant, didn't even get a year. I hope you continue to do well.

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    1. Thank you, Carol. I am sorry to hear about your friend.

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  4. Hello to you, Paul.
    I am amazed by your blog! I wish you strength and joy.
    I have a 80 year old patient diagnosed with bpdcn and I've been looking for the best treatment for him. I came across your site.
    Hopefully, you will find peace and joy and get your health back.
    Thank you

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    1. The peace and joy I have. Yeah, it would be nice to have my health back, but whatever the Lord wills is good with me. There are some positive signs this week.

      Having BPDCN at 80 is pretty scary. At that point, I want to pray he has had a good life and that God will heal him if he has not. I pray God is close to him, and he is filled with joy in God's presence whether the healing comes or not.

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  5. Paul,
    I just finished writing and popped over to see how you were. WOW! I'm so glad I checked!! I cried reading your post. Then my tears turned to tears of joy hearing how God restored your joy. He may not restore your neutrophils; He may not restore my joints (not as major a deal as your neutrophils!); but as long as we continue in His Joy, we are OK!! Keep walking with Him, my friend. I'm so sorry that this has been such an arduous journey. I have noticed that it is one that continues to teach me, if I allow it to. Here's to the journey!

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    1. Thanks, Tamara. That is so true. It has not been very long since I read your blog, no more than a week or two, and I didn't realize you were having joint problems. I did hear about the relapse, but minus the P-17 deletion. Such weird things happen to us, but we're both still breathing. That is indeed the hand of God.

      By the way, I've been told for years about the angel crippling Jacob in his hip when they wrestled. I've always been told that the Word (Jesus before the incarnation) crippled him on purpose so that he would not trust in his flesh. You and I are the same way. Cancer couldn't kill us. It can't ever kill a saint. We die when God wants us to die. Nonetheless we have been hit with something that may or may not ever go away. It's the equivalent of Jacob's hip, and we limp through this life just like he did. It's a sign that God is paying attention and caring for us.

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  6. Sitting in the dentist office getting a root canal. Just read your blog. Made me cry! Thanks for sharing all your pain , struggles and joy. It always builds my faith whenever I read your writings. Thanks so much!

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  7. Hey Paul - I have followed your blog so often, you have no idea how important your words have been to me and my family and my husband, who was diagnosed with BPDCN in 2012. I was so wrapped up in our struggle I never got the chance to say thank you. You helped us a great deal with your positive outlook and faith and gave us hope when it seemed that there was no hope to have. My husband, Dave, stopped producing neutrophils and we thought the journey was over. He was prescribed dexamethasone steroids to make end of life more bearable. The steroids were amazing and gave him an extra 6 months of great health.

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  8. PS - Didn't mean to use the term end of life - that is what the Doctors were thinking, but it proved not to be the case x

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  9. Wow. That makes me a bit speechless. I haven't produced neutrophils without Neupogen shots for about 8 months now, though that appears to me to be ending this week. I'm a little confused why stopping producing neutrophils would mean the journey was over, since I'm basically in that condition now. I had no neutrophils the entire month of May because we tried stopping the Neupogen shots. Did they say anything else besides that neutrophil production had stopped?

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