Infusion #23

We had a good conversation with Dr. Halfdanarson yesterday. No matter how long we have to wait, he always sits down and talks and makes sure we understand what’s going on. Lois’ lab work showed the white count was down and her kidney function is OK –that’s good news. However, her liver function is off a little and her hemoglobin was down another 1.5 points. Those are levels we will watch closely for four to six weeks until the next CT Scan.

Because the Clinic was closed for Memorial Day, all the Monday patients were pushed to Tuesday and Wednesday so the place was crowded. We checked in at 8:30 am and finished in the Oncology Clinic at 11 am and waited until 2 pm for a chair in the Infusion center. While we waited we asked for a pager and went to the Melrose Dining Room for lunch and then to the pharmacy to take care of a paperwork snafu.

I moved Lois around the hospital in a wheelchair although her sprained ankle is starting to heal and she can at least put some weight on it. She is still using crutches around the house. The ankle is turning all the colors of the rainbow but at least it’s not throbbing every time she moves around.

During the long infusion Lois was able to sleep and probably got a three hour nap! I spent over two hours out in the skywalk on the phone. Afterwards I was surprised that she was feeling well enough to be hungry for I-Hop. So we stopped there and she had breakfast and I had supper. We arrived home at 8 pm.

It’s Thursday afternoon and Lois is resting. So far, no nausea or diarrhea and she still has an appetite. She is feeling well enough that she enjoyed our four grandsons when they stopped by for a visit this morning. Friday afternoon home health care will come and unhook the fanny pack pump.

Thanks for praying for and with us.

Don’t Lose Heart

Frank (not his real name but he read this and gave permission to tell the story) called to talk about the downward spiral in his life. Everything was coming unglued: his widowed father was just diagnosed with dementia and had to be put in a care center; the first Elder’s wife had called with a list of 5 people who were complaining that the pastor never came to call; she also reminded him that attendance has been down the past three weeks and he needed to “do something;” the trustees were pushing him to help with the remodeling project at church on Saturday (his only full day to work on his Sunday message because he’s bi-vocational); and the parents of a teen called to complain about another teen attending youth group whom they considered a “bad influence.” On top of all that, his migraines have returned and the medication he depended on for years isn’t working.

He said, “I didn’t sign up for this. Maybe this isn’t God’s will for my life. I’m not sure I have what it takes.”

We talked and shared some Scripture and prayed together.

Frank’s last question was, “Why is serving God so painful?”

Allow me to make four observations:

First of all, this is why I do what I do. I’ve experienced the draining emotions Frank described. Been there. Done that. And I remember wondering, “Who can I talk to?” Whatever it takes, share these burdens with someone who can keep confidences; who understands; who isn’t intent on fixing everything or having all the answers. Call, email, text, set an appointment to meet with me . . . Yes, I have someone I talk to in order to help me process and determine which burdens are real and which ones are false – from the enemy.

Second, we get way too hung up on “finding God’s will.” “God loves you and has a wonderful plan for your life,” is certainly true, but its interpretation is critical. Many of us suffer delusional ideas when it comes to God’s plan for our lives because our minds seem bent on happiness and security issues. Most of us immediately think of God’s direction for our individual lives in terms of education, career, marriage and family. We want to interpret God’s promise as a supernatural guarantee that offers personal peace, physical security, economic success and inner significance. And when that kind of spiritualized success does not materialize we are disappointed with God. It is often unclear whether or not there is a distinction between a worldly strategy for self-fulfillment and Jesus’ strategy for self-fulfillment. The “wonderful plan” seems to have little to do with taking up a cross and following Jesus and more to do with a false gospel of health and wealth. We forget that Jesus said, “If anyone would come after me, he must deny himself and take up his cross and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will find it” (Mt 16:24-25).

Third, don’t trust your feelings. To base the will of God on human speculation, opinions and feelings, is to fall victim to the spirit of the times and the mood of the moment. But to establish God’s will on the solid ground of God’s revelation is to live on a firm foundation that weathers the storms of life and the volatility of feelings. The word of the Lord defines the long obedience in the same direction, apart from which we are constantly wandering down dead ends and dark alleys. When these discouraging times come, “We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ” (2 Cor 10:4-5).

Fourth, in this life of following Christ we have to have durability; especially those of us in ministry. Chuck Swindoll wrote a great article on standing firm and staying faithful. Click here to read.

“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.” (Hebrews 12:2-3)

(Thanks to Doug Webster for his input.)

God is Faithful

We are experiencing a tremendous answer to prayer! The lab reports were very good and Lois was able to get her first infusion of the new (for her) Folfiri Chemo regimen. This is a wonderful surprise because Lois has been nauseated, had very little appetite, and has generally felt sick since getting home from the hospital one week ago. Tuesday morning, as we drove to Iowa City, I prepared myself for what I expected would be a decision not to do an infusion – but God is at work and His will is being done.

Infusion # 22 was the first on a new regimen called Folfiri and includes Leukavorin, Avastin, Irinotecan, and Fluorouracil. The Irinotecan replaces the Oxaliplatin and the Fluorouracil will continue to be delivered via a “fanny pack pump” which is started at the hospital and disconnected 46 hours later by home health care. The other change is that Lois no longer has the Fluorouracil bolus prior to being hooked up to the fanny pack pump.

In the middle of all this, Lois fell Monday night and sprained her ankle. So we’ve done the Emergency Room routine in between lab work, consultations, and the infusion, to get x-rays and deal with that injury. Her left ankle is really swollen but it’s not broken! Treating this has been frustrating due to the neuropathy which made putting cold on the ankle more painful than the injury! Waiting for x rays and getting them read by the radiologist took an extra four hours yesterday. We left at 6:30 am and arrived back home at 11 pm.

We are watching for the expected reactions to this new Chemo “cocktail.” The Oncology pharmacist instructed me to purchase a package of 42 Imodium capsules before leaving Iowa City. Diarrhea can be severe and we were given a stern warning to ignore the instructions on the Imodium package and follow a set of directions they gave us. They are very concerned about the possibility of dehydration. So far, Lois has had very little problem with this but she has also experienced a great reduction in appetite and is not eating as much. In fact, yesterday she ate more than in the previous 5 days and that’s not saying much.

We had a long discussion with Dr. Halfdanarson’s nurse and his PA (Physician’s Assistant) to determine what to do about controlling pain without a lot of drowsiness and lack of appetite as well as controlling Lois’ blood pressure which is still high. We changed a number of medications, again, and we now have a spreadsheet to help manage all the prescriptions.

Again, we praise God that Lois is doing so much better than last week and that she was able to begin the new Chemo regimen. Thanks for praying! God is faithful!

Update on Lois – May 7, 2009

We arrived home on Tuesday at 11 pm. Transfusing the two units of blood took a long time; and to extend the wait even further, the last unit finished at the same time as shift change!

Lois is sleeping fairly well at night. The steroid spray in her nose seems to have helped with congestion – she just wakes up with serious dry-mouth. Our biggest challenge is pain management. It’s not that Lois has a lot of pain – she describes it more as discomfort in her belly and sides– but the oral medication requires a lot more time before it takes effect. Extra Strength Tylenol to gives her a lot of relief in between the long acting morphine. We’re learning the routines of medication including the Lovenox injections to prevent more blood clots.

Lois moves between the recliner and the couches most of the day. Her temp is close to normal and her blood pressure is not as high as it was on Monday. She is resting and eating and resting some more as we trust God that she will have the strength to receive a Chemo infusion on Tuesday, May 12.

Unless something unusual happens, I’ll wait until after the infusion before sending the next update.

We know God is leading and guiding – His will is being worked out in our lives. Thanks for praying.

Update on Lois – May 5, 2009

We have had a most interesting and productive day:

First of all, Lois is feeling much better. Last night she slept the best in a long time. She has not had a temp over 101 today which is a major improvement.

Secondly, we’ve continued to work with Palliative Care on managing pain and the Chemo “cold” – the almost constant sinus drainage. We’ll begin using a nasal steroid tonight which should help a lot with that. Last night Lois started taking a long-acting morphine which will help with the achy pains that will certainly increase if the liver tumors continue to grow.

Third, we transitioned all Lois medication to be taken orally as part of the process of preparing to go home.

Fourth, in consultation with the Staff Dr, the Resident Dr, the Palliative Care Dr, and our oncologist, Dr Halfdanarson, we are moving ahead to get Lois ready for a Chemo treatment on May 12. There is a lot of hope that we can slow the growth of the tumors with a Chemo “cocktail” generally known as Folfiri and that’s what we will begin next week. In order to accomplish this Lois needs to be stronger.

Even though her numbers from the lab work have been consistent since Saturday, they are all on the low side of normal or just a little below the established benchmarks. So, as I am writing this, Lois is getting the first of two units of blood. Conventional wisdom is this will boost her system and bring all the numbers up so we can do the first infusion of Folfiri.

When the blood transfusions are complete – about 8 pm – we anticipate Lois will be discharged. Getting home is a key component in helping her body be ready for Chemo next week.

God continues to be faithful and trustworthy! Being able to go home this soon is a great answer to prayer! Undoubtedly, we face more road bumps in this journey, but we are confident as we place our dependence and hope and future in God’s hands that He will never give up on us! We are trusting God to be God.

Update on Lois – May 4, 2009

Lois is feeling better today; the fever is not spiking as high (102 right now), pain control has been much more successful, and appetite is slowly improving. We were able to have a productive conference with the medical team and, even though we don’t have a lot of answers, we do have better questions.

Here are some bullet points of information:

· Pain is under control but it has taken the combination of delotid, morphine and Tylenol. We are working on methods to deliver pain control at home

· Lois will have daily injections to prevent more blood clots

· Dr Halfdanarson, our oncologist, is not overly concerned about the right kidney since all the labs and cultures have not indicated any infection. It’s something to watch . . .

· There is a trace of blood in Lois’ stools but, again, not enough for alarm.

· Even though the temp continues to spike, they are pleased that it’s on a downward curve.

Lois has been considerably more alert today and has fully participated in the discussions with caregivers. We have made it very clear that our goal is to control pain and get Lois home. The medical team has agreed to try to accomplish this in the next couple of days by moving to pain control and antibiotics that can be taken orally. We had a good discussion with the Palliative Care team and will begin doing more to make sure we are preparing for managing the pain that will come with the expanding liver.

We do appreciate your prayers, visits and calls.

Someone said to me yesterday that they were trusting God for a miracle. God is certainly able to do that and all of us would welcome a miracle and give Him all the credit. However, we are trusting God to be God no matter what.

God Gets the Last Word

There are so many things going on in our world, in our churches and in our individual lives. In the past couple of weeks I’ve had opportunity to talk with a lot of pastors and church leaders; some were face-to-face and many visits were by phone. As leaders we face many challenges: decreasing interest in all things spiritual; dwindling resources and rising expenses; marriages under stress; teens struggling with peer pressure and life decisions plus the temptation for sex, drugs, and alcohol; and then there’s the unstated expectation to keep everybody “happy.”

Just writing this down sets my mind in high gear. I would be thrilled if I could sit down with you one-on-one and let stream-of-consciousness rule the conversation for about two hours! This is an idea of the subjects we might cover:

· We are called to live “above reproach” – the expectation is not perfection but a life full of humility, prayer, obedience, and grace. The way we live is more important than what we say in a sermon. Words end up being empty if the voice speaking them has little or no credibility. Remember Paul’s admonition to Timothy: "Pursue a righteous life—a life of wonder, faith, love, steadiness, courtesy. Run hard and fast in the faith. Seize the eternal life, the life you were called to, the life you so fervently embraced in the presence of so many witnesses." (1 Timothy 6:11-12 Message)

· The current economic downturn and general malaise in American society is a great opportunity to speak truth about the real source of hope! James teaches us that “every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” (James 1:17 NIV) Entitlement programs increase our misplaced dependence on government rather than on “the Father of the heavenly lights.”

· There will always be more ministry opportunities than resources. No matter whom I’m talking with, from the largest to the smallest of the churches, pastors and leaders live with the daily tension of funding. The playing field is level – every ministry struggles with managing limited resources. That includes large churches with large budgets – so don’t daydream of a larger church in hopes that will solve the financial pressures! Creativity always trumps budget.

· My friend, Doug Webster, recently shared this truth with me: “Preaching is proclaiming the whole counsel of God the way Jesus would. In the Gospel of Matthew, Jesus began his public preaching ministry with the Sermon on the Mount (Matthew 5-7) and ended it with the Sermon on the End of the World (Matthew 24-25). These two sermons frame his teaching ministry and offer insights into Jesus the Preacher. They model for the church how preachers should preach. If we want to learn how to preach, we need to pay attention to Jesus. Most of us are more familiar with the Sermon on the Mount than we are with the Sermon on the End of the World, but even then few of us understand Jesus’ twelve minute Sermon on the Mount as a whole. Preachers tend to break it up and preach it piecemeal. We have been taught to dissect Matthew 5-7 into small sections for microscopic exegetical examination or for homiletical sound bites. Instead of grasping the totality of the sermon, we think of the sermon as a collection of random sayings and reflections from Jesus. Then, we turn to textual technicians to decipher and decode the text. Preaching, however, is neither solving an intellectual puzzle nor appealing to an audience’s emotional felt needs. Preaching is proclaiming the whole counsel of God the way Jesus would.

· I really enjoy my job! Yes, I have a lot of windshield time. No, I don’t like being away from home as much as I am, but this is what God has given me to do. I like being with pastors and church leaders listening to the joys and pains of ministry. I’m learning to resist the urge to “solve all the problems” and be an encourager. God has already given you everything you need for today!

· Life is an adventure and our 34th year of marriage has been marked by Lois’ having cancer. We don’t see this as a trial or even a battle. Cancer comes because we live in a broken, fallen world where sickness and tragedy occur. Maybe cancer is a gift – we are certainly learning more about dependence on God, appreciation for family, patience in the unknown, and faith in the Great Physician rather than the medical community. In addition, God continues to give us opportunities to share His grace and hope and presence with others. In the middle of all this we Choose Joy!

If some of these stream-of-consciousness-ideas have sparked a desire for conversation, please don’t hesitate to call, text, or email me. We are in this together: partners in the Gospel.

“So be content with who you are, and don’t put on airs. God’s strong hand is on you; he’ll promote you at the right time. Live carefree before God; he is most careful with you. Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does.” (1 Peter 5:6-11 Message)

Update on Lois – May 3, 2009

Lois is resting more comfortably and she is not complaining of as much pain – medication seems to have that under control. She is still sleeping a lot but is a lot more alert when she is awake. After 36 hours of broad spectrum antibiotics, Lois is still spiking temps but not as high as 104 – that alone is a great answer to prayer! Her appetite is slowly coming back but she is still sticking to simple foods. Peter, Joy, and Kari are here with us today.

We have more questions than answers but here is what we are learning from yesterday’s CT Scan:

· The tumors in Lois’ liver have all grown since April 1 when the last scan was done. None of them have grown considerably, but since there are more tumors in the liver than we can count, all of them growing just a little have significantly increased the overall size of the liver.

· Since the liver is growing it is pressing into areas where its meeting resistance which causes fibrosis. The fibrosis has caused some blockage in the ureter – the tube that carries urine from the right kidney to the bladder.

· Some of the medical team thinks the infection causing the fever is from the right kidney which looks somewhat inflamed. There are three options: One is to insert a stint in the ureter which has a fifty percent chance of working. Another is to do a Nephrostomy, an external drain inserted through the back into the kidney and attached to a bag worn on the leg. The third option is to do nothing and see what happens and even though that poses risks that is what we have chosen to do at this point.

· There may be some kind of mass in Lois’ lower abdomen or it might be where some of the liver has actually broken through the sack in which it is normally contained.

· The scan shows a blood clot in the lower right lung in an area where it’s not causing a lot of alarm, although Lois will have daily injections of some form of heparin for the next few months.

We still have a lot of questions: We don’t have any long term plans for continued treatment. We know dehydration was one of Lois’ problems when we went to the ER on Friday night we still don’t know why she was dehydrated. Is there anything we can do to attempt to slow or stop the growth of the tumors?

We will try to keep you up-to-date as we learn and make decisions. We appreciate all of you and especially those who have communicated over the past 24 hours that you are praying for Lois and the whole family. We are certain that God worked and will continue to do so.

Lois Update – May 2, 2009

Thought you should know . . . Lois continued to experience symptoms that were strange even after the Doctors decided not to do Chemo this past Wednesday. Yesterday afternoon she had a growing awareness of pain which increased in intensity in the evening. She slept most of the evening.  Several times when I touched her forehead I wondered if she had a fever. About 11 pm she got up from the couch with the intention of going to the bathroom and then on to bed but she could hardly walk the pain was so intense.

We looked up some information and decided this was not normal – not even the “new normal” so we made the decision to go to the Emergency Room at the Sigourney Hospital. There we discovered she had a temp of 104, was dehydrated, the white cell count was high, the hemoglobin was down and the liver enzymes were out of whack. (That’s medical terminology!) The physical exam confirmed the area of the liver to be extremely sensitive – Lois recoiled when it was simply touched – and the liver is enlarged.

The Sigourney Hospital called the Oncologist on-call in Iowa City and together we decided that Lois should be transferred to the University Hospital so they can do tests to determine exactly what’s going on and suggest a possible treatment protocol. Lois got to ride in an ambulance since they wanted to keep her IV fluid drip going and manage the pain with morphine. Fortunately she didn’t have to go through the ER but was taken right to a room. She arrived in Iowa City about 3:15 am and I was an hour behind her since she gave me a list of items to pick up from home.

As I write this it is noon and she just had a CT scan. We expect them to do an ultra-sound and a chest x-ray within the next couple of hours. It’s still a challenge to stay ahead of the pain and keep the fever down – right now her temp is 103.1. She has waves of pain – she might have very little for a time but then it just rolls and tolls.

All the doctors who have examined her (and there have been many – this is a teaching hospital) seem to think the tumors in the liver are growing faster than anticipated. They are also very concerned about the fever. So now we wait for answers.

I was supposed to leave this morning on a six day trip but that is now cancelled and I’m working the phone and email to stay in touch.

We really appreciate your prayers on our behalf and ask that you join us in thanking God for the miracle that in 11 months, this is our first encounter with these kind of consequences from the cancer that is growing in Lois!

Watch for more updates as we learn more!