The Good News: God’s Got Dis

underdogWhen we last left our hero, his ANC (white blood cell neutrophil count, a sign of infection risk) was 510 at the NIH visit on May 6. Low normal is 1500. But the higher the number, the less infection risk. I’ve been very concerned and cautious about infections since that’s what kills most people with Aplastic Anemia.

I prayed a lot the week after my NIH visit that my ANC (white cell neutrophil count) would increase from 500 to 600. After all, I was told that I wasn’t responding to the treatment, so I obviously was a little worried.

Each week, I’d been asking my ‘spiritual leader’, my brother-in-law Kevin, to ask God specifically to increase my ANC level to 600. I was looking for a “sign from God” that everything was going to be OK.

Then my numbers came back the following week.

ANC: 500.

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Bummer.  Down from 510. Still no progress and still have to worry about infections.

When it came back at 500, Kevin said, “They may say it’s 500, but faith says it’s 600!”. That’s when I made the connection…

1 Corinthians 5:7 For we live by believing and not by seeing

This was a test of my faith! So I prayed again to reach the 600 level the following week. But this time, I told God that I was OK with this test and that I would accept whatever He wanted my level to be. “I know you have a reason for my disease and a plan for me,” I’d say to Him.

That week, I started feeling the best I’d felt since January when I was diagnosed. It was kinda eerie to me knowing that I was really not progressing in my blood counts or transfusion dependency. I still had trouble breathing with exertion ( a symptom of the anemia), but no real nausea.  I even had an urge to do some yard work outside last Sunday. I’d been avoiding it because of the risk of infection, still wearing my mask in crowded places.

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But I felt God telling me, “It’s going to be OK. Live your life for me. Be patient, and don’t worry. I’ve got this.”

Then the results of my blood test came back.

ANC: 600!

(Oh, did I mention that I did my TheraBand exercises just before my blood test this time? Remember my experiment in the hospital?)

I was at Mary Bird Perkins outpatient transfusion center weekly getting blood and platelets. I usually get stuck by needles 4 times in one day as they try to find a vein that works. I think about Jesus being nailed to the cross as they squirm the needles in my veins, looking for blood.

Jesus_nailed_to_cross-793004Last week, my platelet level was still low, but still high enough not to need a platelet transfusion. While I still needed a red blood cell transfusion last week, having longer periods of time between transfusions is a good sign of progress.

I continued praying each day that God would increase my levels. Today, I had my weekly blood test.

ANC: 700!!!!

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That’s the highest it’s been since I was diagnosed in January! (Did I mention I did my TheraBand workout again before my blood test today?)

In fact, all my levels are higher (except platelets) than when I was diagnosed in January. In addition, I’m trying to go another week without platelets OR red blood cells! My counts seem to be stabilizing, although they remain low.

What a great sign of progress… but while we’re out of the woods, but we’re not out of the tall grass yet.

Then I did some math. I realized that in actuality, I was released from the hospital on April 10 after my infection, so the clock should have started ticking at the beginning of April rather than the beginning of February as they had calculated at NIH for my 3-month follow up earlier this month. That means that I would technically show a 3-month response by early July. So perhaps I wasn’t as non-responsive or ‘behind schedule’ as I thought. I’m on God’s schedule, anyway.

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My ANC goal was 500 for my 3-month follow-up visit, which I hit. My goal for my 6 month follow-up in August is an ANC of 1000, and I have complete confidence that I’ll reach that goal if not 1500! I’m almost half-way there! Just have to keep up that TheraBand workout…

Isaiah 41:10 Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with my victorious right hand.

 

 

My follow-up visit at NIH

First of all, apologies for not updating everyone sooner. As I’ve gotten back into the swing of things, I’ve gotten as busy as I was before (sans the travel). I’m finding it harder to make time for everything I need to do, particularly at this time of year, as school ends, driving lessons begin, and recitals engulf the rest of our time. By the way, have you seen my beautiful daughters in their dance recital costumes? It’s hard to believe the twins are 16 and almost driving!

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I figure it’s good news that I’m busy…back to doing the things I used to. I’m working full time from home, which is easy because I sit behind a computer or phone most of the day.  I shuttle kids around and do most of the cooking, which I enjoy. Sometimes it’s hard to just sit there and watch everyone do everything else.

A few weeks ago, I was feeling pretty rotten. We found out that I was becoming toxic from my chemotherapy! I was at 3 times the normal levels in my blood, making me feel sick just about every day. We’ve cut back on the medication, and I’m doing much better, although I know I”ll have to try to get back to the therapeutic level really soon.

Overall, I feel pretty good an quite normal most of the time, although I know when I’ve overdone it!The only things I don’t do are strenuous activities, or things involving potential infections like dirt, animals, etc.  But I know I have to save my energy and remain infection-free. Luckily, my neutrophil count was 510 last week, so I’m climbing back up…for now. I’m constantly checking my temperature to be sure I don’t have a fever, which could be a medical emergency for me.

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Last week, Angela and I went to Bethesda to the NIH for my 3 month follow-up (3 months from when I started treatment in February).  While the good news is that I’m feeling good, I haven’t responded as we had hoped. I still require weekly transfusions and my counts aren’t going up.  They are going to give me 3 more months of chemotherapy and see if I respond then. Some people have taken up to 6 months, particularly if they had an infection (like me!) Remember that I stayed in the hospital until about a month ago, so essentially I’m a month behind, and remain optimistic that I will respond.

At my follow-up I had my 4th (yes FOURTH) bone marrow biopsy. This time, my nurse practitioner, Monica, performed the procedure while I was sedated. It went very well, and I didn’t have any pain! Just a bit of pressure, and remained awake the entire time. She did a fabulous job.

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At the 6 month follow up in August, I’ll have another biopsy and they will decide the next step. If I stay the same as I am now, they will try another round of immunosupression with a different drug. However, if my counts decrease, my transfusion dependency increases, or I get multiple infections, a bone marrow transplant may be my only hope.

At this point, I don’t have a full match for a bone marrow transplant.  As you know, it’s very difficult to find a non-sibling match, which is why it’s so important to get tested! (www.BeTheMatch.com) There might be an experimental stem cell transplant if needed, but we are praying that I won’t need a transplant…and I ask that you pray for the same.

I haven’t had a drink since February 1, and haven’t really missed it. Sometimes, I think about how good my home brew tasted, but all-in-all, I haven’t missed it as much as I thought I would.  Luckily, I have some very thoughtful and awesome friends who have sent me some great alternatives like root beer, or t-shirts from breweries, or books on home brewing! And one of the most thoughtful was from my friends Julie and Mike:

DRAFT beer jelly belly hero IIHIH

Yes, Jelly Belly Draft Beer Jelly beans and commemorative beer glasses! What an awesome gift (although my beer definitely tastes better!).

But one of the best gifts I got was from Barb. She sent me a copy of “Jesus Calling,” which is a daily devotional. I’ve been reading it every day and it really helps me focus on God as I get through this.

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 I continue to thank God each day that I’m “still on this side of the grass.” Angela reminds me of how close I was to dying in the hospital. All I could think about was how I prayed in the hospital that I’d make it back to see my kids. Hang out at the Brewshack with my family and friends. Get back to work. And He’s done it.

 Matthew 7:7-8 Ask and you will be given what you ask for. Seek and you will find. Knock and the door will be opened. For everyone who asks receives. And anyone who seeks, finds. If only you will knock, the door will open.

#Mojo