nKurEdge

It was a long day. We arrived at the Hospital at 8:50 this morning for lab work scheduled at 9:15. We were scheduled to see the Dr. at 10 but that didn’t happen until just before 2 pm! We left the hospital at 5:45. The labs were about the same as two weeks ago. Lois’ hemoglobin is still on the low side but not so low as to require any action. The infusion and injections went in without any reactions (another gift from God) and the fanny pack pump is hooked up. (Yes, we checked: the clips are undone!)

Lois and I have both noticed some hair loss the past two weeks. The Dr confirmed this is not too unusual and might just be short-term. In other words she might not lose all her hair. On the other hand, after 13 months of chemo infusions the hair loss is not a surprise.

Pray for Lois (and for me). We arrived home at 8 pm and within 30 min I had the car loaded and was on the road for a four hour trip to Kansas City. (That’s where I’m writing this at 12:45 am) I have meetings and appointments for the next 11 days in MO, OK, IN and OH. Lois is OK with all this but I don’t really like being gone right after the big infusion and while she still has the fanny pack pump running. Even though she hasn’t experienced any major problems . . .

So we trust the Lord. I’ve been thinking a lot about Ps 31 while I was driving. I’m stuck on vs 3: “Since You are our rock and fortress, for the sake of your name lead and guide us.”

The past two weeks we have experienced God at work in so many ways that our hearts are full of praise and thanksgiving. We are reminded of Psalm 24:5-6, “God is at our side; with God’s help we will make it. This is what happens to God –seekers, God-questers” (My paraphrase).

Two weeks ago today we discovered that the infuser, what we refer to as the fanny-pack pump, had not been started properly; the result of which was that I disconnected it on Sunday morning, July 12, flushed the lines, injected the heparin and removed the needle! All went well and my worked passed inspection! That was an answer to prayer because Lois and I really wanted her to be able to come to camp. However, the delay meant Lois dealt with the effects longer but still had a great week and was able to attend all the worship services!

On Thursday evening, July 16, she spiked a fever and woke up with it on Friday. One of our key staff, a woman who is very sensitive to God’s leading, took a group to our room and laid hands on Lois and prayed for her. The fever broke! Another answer to prayer and as a result Lois felt well enough to pack and load the car.

We enjoyed a visit from Lois’ sister, Beth, and her daughter Jordan who arrived on Sunday evening. Since Beth was here we had family over on Sunday, Monday, and Tuesday evenings and, in another answer to prayer, Lois had the strength to enjoy the whole family.

Wednesday morning Beth and Jordan left to drive back to Colorado Springs just a few minutes before Lois and I had to leave for Iowa City and Infusion #27.

The lab work was OK but nothing to be too excited about and so the Dr. ordered an injection to give Lois’ system a boost. He also told us the CEA number, the tumor marker, was elevated some and confirmed that we would have a CT scan and full labs on August 19.

The infusion and fanny-pack pump went in without any challenges – another answer to prayer! Lois is tired and has some slight side effects but nothing serious. Again, we praise God for His goodness.

Thanks for praying with and for us.

On Wednesday, July 8, we arrived in the University Hospital in Iowa City for what we anticipated would be a short day. Lois had an appointment to have lab work done and they go right to the Infusion Unit. No appointment to see the doctor. Then we waited an hour and fifteen minutes for a nurse to access Lois’ port and draw the blood for labs. Then we waited some more – ninety minutes for the labs to come back and for an opening in the Infusion Unit. I keep reminding myself that when we go to a world-class hospital the mantra is, “hurry up and wait!”

At 2:20 all the bags of Chemo and related drugs were empty and the nurse hooked up the fanny pack pump for the 5FU that drips for 46 hours. We headed home.

Friday morning Lois woke up and sensed that the fanny pack didn’t feel any lighter. She looked at the pump and it was still full! We discovered that there were two clips this time and one of them was still crimping the tube! (We hadn’t noticed two clips in the past and wonder if in all the juggling of the multiple tubes they use to infuse the chemo drugs an extra was added.) We called the nurse and started the chemo.

These situations remind us that we are not in control and that’s doesn’t mean the medical community is either! Instead, we need to be awakened to the reality of God’s control. Jeremiah was brought face-to-face with this reality when God said, “Let not the wise man boast of his wisdom or the strong man boast of his strength or the rich man boast of his riches, but let him who boasts boast about this: that he understands and knows me, that I am the LORD, who exercises kindness, justice and righteousness on earth, for in these I delight," (Jeremiah 9:23-24).

Lois is feeling well enough that she is determined to go to camp with me and that includes a special retirement service for a wonderful pastor on Sunday morning. So, when the fanny pack pump finishes about 6 am on Sunday, we’ll be in Excelsior Springs, MO! That means I get to “de-port” my wife! I’ve watched the nurse do this several times and it doesn’t worry either one of us. Chalk it up to another new experience!

We appreciate your prayers this coming week as we lead the team at Tri State Camp. We’ll be at a new facility (for us) just south of Ottawa, KS on I-35. Lois and I will have a motel-like room in which to stay and she decided she can sleep there just as well as at home!

On Wednesday, June 24, Lois had Chemo Infusion #25 and the fourth one since we started the new the new regimen, Folfiri. We arrived in Iowa City on Tuesday evening so we could be at the hospital for lab work at 6:30 am followed by a CT Scan. We met with Dr. Halfdanarson at 10:30 am and learned that the CT Scan showed no change; the tumors in the liver haven’t changed at all since the first of May. In fact, when the radiologist’s report came through later in the day, he thought a few of the tumors may be slightly larger.

The CEA number, that tumor marker we keep track of, went from 13.8 to 15.4. The Dr. waved that off saying a one point change is not unusual and he wasn’t overly concerned with that. We will continue on the Folfiri regimen and plan to do three more infusions before another full set of labs and a CT Scan.

Once again, the drugs they give Lois to mitigate side effects enabled her to sleep for most the infusion time. Because she is tolerating the chemo so well, they were able to speed up the delivery so that the entire infusion was a little more than three hours. I really appreciate the Ethernet connection in the room which helps me use the wait to be productive.

Lois is feeling well enough this morning that we went over to Joy and Tony’s house for a few minutes to be with Broc who is celebrating his 5^th birthday today!

Thanks for praying!

Lois is doing quite well and we rejoice in answered prayer! First of all, the ankle she sprained so badly is healing and she is able is walk. Being mobile and not having to wait for Jim or someone else to do everything is a great improvement! This is God at work.

In addition, the lab work on Wednesday included the CEA number – the “tumor marker” which is used as one of the methods for measuring whether or not the cancer is advancing. The first part of May the CEA number was 18.4 and now it’s 13.8. Obviously, God is at work either using the new Chemo cocktail or any other supernatural means to slow the advance of the tumors in Lois’ liver. Again, this is God at work.

Finally, Lois had infusion #24 without incident. No severe diarrhea, no vomiting, no reactions. Yes, she is still dealing with neuropathy in her hands and feet (the feet are much worse than her hands) but that is really a minor side effect. Two weeks ago the infusion produced some light nausea from day 2 thru day 5 but Lois only vomited once. Lois’ appetite is OK but we know the next few days she will not be very hungry. Those are side effects we can deal with. We recognize this is God at work.

Your phone calls and cards and emails are a great encouragement to us and remind us often of the debt we owe for your friendship and partnership. Thank you for praying with us and for us!

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.

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!

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.

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.

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.