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!
Lois
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 5th birthday today!
Thanks for praying!
Lois
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!
Lois
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.
Lois
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!
Lois
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.
Lois
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.
Lois
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
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!
Lois
We traveled to the University Hospital in Iowa City this morning for what we anticipated would be Lois’ 22nd Chemo infusion – but it didn’t happen. The lab work showed a significant decline in Lois’ overall health. The outward symptom is that she is exhausted. The blood tests indicated a drop in hemoglobin and white blood cells; the liver function has decreased and her kidneys are trying to make up for what the liver is not doing. There is also physical evidence that the tumors in the liver are firmer and a little larger. The lab work today did not include a CEA “tumor marker” evaluation.
Based on this, Dr. Halfdanarson and his team of oncologists decided to give Lois a two week rest from Chemo. Hopefully her body will regain some strength instead of dealing with the onslaught of Chemo chemicals again. On May 11 we will have a CT scan in the late afternoon; we’ll stay in Iowa City overnight so we can be back at the Hospital by 8 am on Tuesday the 12th. The medical team will look at the scan and lab results and then we expect a recommendation for a new “Chemo cocktail.” They gave us some ideas of drugs that might be used but its all speculation right now.
We accept this as part of the adventure. God has not caused this to happen but He is certainly in charge! We ask you to continue to pray for and with us that God’s plan will be worked out in our lives.
Psalm 139:14-17
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them!
Lois
