Tag Archives: medical update

Disappointment or His appointment?

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Disappointment? Or HIS appointment?

 

Today we learned that the second round of chemo did NOT get rid of the cancer blasts. I came in with 80+% blasts, got down to 7.8% blasts after round one, but still have 5% after round two.

 

It is a certain disappointment as we were sure we would get it all with this treatment. But as with all Disappointments, you change one letter and look at His appointments: the appointment that our sovereign and loving God has for us. If we aren’t to believe this we would have to take scissors to our bible and cut out all the promises of God that sometimes “seem” empty if we only look at the present circumstance.

 

God’s banner over us has been one of mercy and love throughout this difficult journey that has softened us, and made us more moldable to his will. It has brought my dear bride and I ever so much closer and given us such a greater appreciation of the attributes God has given each of us. I would never ever want to go through this without her. She has been my main medicine and a tremendous source of peace to me. She is strong but needs your prayers for this is a tough battle for her too.

 

What’s next: (as far we know)
My doctor is closely coordinating with my transplant doctor in Iowa City. I have been preapproved for a stem cell transplant evaluation and also the transplant itself. That is a huge relief because both would be unbearable if it were out of network. ($1/4 million) I have a wonderful dedicated Humana insurance nurse, Reagan, who is a believer and helps me negotiate all my insurance needs, and with prayer. (Thank you, dear God.)

 

I may or may not need more chemo which is a prayer concern because the cumulative effect of all this chemo on my body is very hard. To facilitate a quicker trip to the U of I, I might be released from Mercy before my immune system recovers. I will need to learn to give myself IV antibiotics at home for a number of weeks to make sure we triumph over this rare and dangerous blood infection. It’s possible I might return to Mercy for more treatment between my U of I consultation and the actual transplant.

 

Specific prayer concerns:
That the tremendous loss of liquid in my stools (5-6 liters per day) would stop, especially the loss of blood.
That the antibiotics succeed in vanquishing the blood infection because I have zero immune system.
That I continue to gain strength and fighter cells. I have none currently. I am so very weak and sick. For healing as we long to see more of the goodness of the Lord in the land of the living. But we trust God for whatever he chooses.
That Marcia and I bring honor to God in this fight.
That Marcia will find continued peace and restorative strength throughout the ordeal.

 

Thank you for the much needed prayers. They release God’s power to cover our disappointment and look toward His appointment for our lives.

 

Medical Update – June 2014

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Some folk like to know, so from time we post a medical update on my Leukemia recovery. Fourteen months after transplant and a year and a half since this journey began, the doctors are exceedingly pleased with my progress and not at all concerned with what seems to me a long recovery time.  Most of my blood counts are returning to low normal range with a handful of ones still struggling. The medical team seems especially pleased that I’ve had no fevers or hospitalizations. (Thank you God!)

 

I was glad to get 3 more ‘baby’s” vaccines, including DPT. I may get one more in August; maybe some of the live vaccines next spring if my immune recovers enough by then. They are hesitant on giving live vaccines even then as there is a 50/50 chance of contracting the disease. Along with the ‘baby’ stuff, I continue to require my preschooler naps to contend with lack of strength and endurance, though that too is slowly improving.

 

I had completely underestimated the impact of the disease on my body and the time it would take to recover. They say it is common to take 2+ years to recover from this type of Leukemia and transplant operation… or to find your new ‘subnormal.’  The seriousness of the transplant is deceptive because the infusion of stem cells was so routine; it seemed just like one of my 30 some blood transfusions. (Thanks everyone who give blood on a regular basis. It really DOES save lives!) But the process of destroying your entire immune system <think Galatians 2:20 and 2 Corinthians 5:17> is a major deal. It’s a journey of enduring patience and trust.

 

As good as all the reports are, they want to continue to keep close reins on me. So no letting up on the frequency of labs and treatments or the current med regime to keep Graft Versus Host Disease (GVHD) at bay.  I will also continue regular pulmonary treatments to reduce the chance of lung infection.

 

I’ll have to manage the fine line between exertion and rest in order to regain strength and endurance. I’m trying to work on regaining mental acuity and concentration, but that is a harder row to hoe. The ‘cancer brain’ continues to pose some cognitive issues…hopefully I will grow out of these. (I suspect some of you thought I was a bit brain-damaged BEFORE all this happened!)

 

God is good all the time, and we are pleased to wait on His perfect plan in and through all of this. Isn’t that true of each of us, whatever journey we are on?!  I am not remiss in remembering the pain others are going through. Except my friend Bob who lost his AML transplant battle recently. Now in heaven, he is doing better than ALL of us! Please pray for his dear wife, Betty.  Thanks for your continued prayers.

 

Live life fully each day while time remains!

 

 

Medical Update (May 2014) – fighting the battle

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Mostly good reports from this past week’s U of I visits:

Most blood counts continue within low normal range.

Low immune globulin but I am fighting infections well.

Excellent pulmonary functioning scores.

Can now wear short sleeves with sunscreen. Whoo hoo.

Received childhood vaccines for polio,Hep B, and H.influenza B.
(More to follow in coming visits.)

Bone density scan reveals osteopenia but not yet osteoporosis. (Adversely affected by chemo and prednisone treatments & age.)

Constant muscle/joint aches due to GVHD not RA.

Revisit in 6 weeks.

The interesting thing about the ongoing Graft Versus Host Disease (GVHD) skirmish is that all you can do is arm yourself with the protective ‘armor’ of medications, exercise, and rest. Then try to stand firm while the battle wars within. It is like the battle we each face daily against elements of the spiritual world. We cannot see the enemy, but we experience the blows. Our job each day is to put on the protective armor of God (Ephesians 6:10+) and to STAND firm. And when the fighting is over, to stand still.

Let’s be found standing firm, brothers and sisters, equipped with the belt of truth wrapped around us, the breastplate of righteousness, the boots of peace, the shield of faith, the helmet of salvation, and the sword of the Spirit, praying always in all situations. Our own strength is not sufficient. But God’s is.

Medical update March 7

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I know some of you tune in especially for medical updates. Today’s 11 month post transplant check up was quite routine and pleasantly unexciting. The docs think I am making good progress and reduced the autoimmune suppressant drug a little. This invites a potential increase in GVHD but we will keep close eye on this. Further reductions will be very gradual. I also was able to get off another medication that they have been reducing over the last five months or so.

My next check up is on my one year transplant anniversary next month. I’ll get my monthly preventative lung treatment, a lot more lab tests, a bone marrow biopsy to check for the possible return of cancer or other problems, and of course doctor consult. I am also scheduled to get some more childhood vaccines over the next few months, since I lost all my immunizations when they killed my stem cells. It will take over the next 13-15+ months to get all the immunizations and there are some that they say will be too dangerous so I won’t get those.

There is still a long and unpredictable road ahead. But also there are lots and lots of things for which to give thanks…and we do every day. I hope you are in that same boat with lots of reasons for thanksgiving, especially God’s steadfast grace, strength, and love.