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.
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!
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!
Yesterday, April 15, Lois had her second infusion with the added Oxaliplatin. Because she was on this chemo regimen from July – October 2008, we knew the side effects and were prepared. Sensitivity to cold is the hardest one to cope with. Lois wears gloves to touch anything from the fridge or freezer. She pours milk and juice and lets it get to room temperature before she can drink it. Even the “minty cool” taste of toothpaste is too much so she uses baking soda to brush her teeth. These symptoms are intense for the first few days and gradually wear off so she can break eggs and have a jello salad in the few days prior to the next infusion.
Two side effects of the increased potency of the chemo therapy are the need for a lot more sleep and greatly reduced stamina. Lois spends a lot of time napping while watching TV or trying to read. She has short bursts of energy to do a simple project or spend an hour with grandkids but then she needs to rest. None of this compares to many we know who have severe reactions to chemo – some of which are simply debilitating. The chemo cold, the need for more sleep and avoiding cold for a week are relatively minor reactions – for this we are very grateful.
We are convinced that the ease with which Lois is dealing with Chemo is a direct answer to prayer! God is faithful in the little things – even when we don’t deserve it, He lavishes grace and mercy on us! We appreciate all the notes and cards as you express your care and concern. Thanks for praying with and for us.
I realize we haven’t done reports for Lois’ Chemo Infusions 18 and 19. There really wasn’t much to report. We didn’t even see the Dr prior to those infusions because we’ve all been playing the waiting game. The CEA number has been on the rise since December 2 and conventional wisdom indicated the best course of action was to stick with the plan and wait a few more weeks to see if there was any sign of cancer on the scans. (CEA stands for Carcinoembryonic Antigen and is a type of protein molecule that can be found in many different cells of the body, but is typically associated with certain cancers.)
Today, April 1, 2009, we left home early to travel to the University Hospital in Iowa City so that Lois could start drinking “glow juice” at 7:30 am for a CT Scan at 8:40 am. From there we moved to the Cancer Clinic for lab work and then we waited for the Dr. to get the results of the scan and labs. We learned the tumors in Lois’ liver have grown – the CT Scan clearly showed the increase. The CEA number has also risen from 14 four weeks ago to 16.7 today. It was 4.8 the end of October.
You might recall that the end of October the oncology team decided Lois was doing so well they removed one drug: Oxaliplatin. Today they decided to add Oxaliplatin back into the “cocktail.” (This drug’s main side effect is a serious sensitivity to cold!) We will have three more infusions of Oxaliplatin, Avastin, Leucovorine, and the “fanny pack pump” infusion of Fluorouracil which lasts for 46 hours. In eight weeks there will be another CT scan and a full set up labs and we’ll re-evaluate the response of the tumors. Dr. Halfdanarson assures us that if this doesn’t work, there are some other drug combinations we can try.
We do not consider this “bad news” or even sad news. It’s just news.
Recently, Lois and I were at a church where someone asked, “How is Lois’ battle with cancer going?”
Our answer: “We are not in a battle! The battle is already won and we know how it ends! Cancer is just part of the adventure right now.”
“Just think—you don’t need a thing, you’ve got it all! All God’s gifts are right in front of you as you wait expectantly for our Master Jesus to arrive on the scene for the Finale. And not only that, but God himself is right alongside to keep you steady and on track until things are all wrapped up by Jesus. God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that. (1 Corinthians 1:6-8 The Message)
Please continue to pray that we will be faithful in “this spiritual adventure.”
On Friday, February 20, the home health care nurse arrived at our house to disconnect the “fanny-pack” pump which completed Lois’ 17th infusion of Chemo drugs. Of course, that all started on Wednesday at the University Hospital in Iowa City where Lois received three doses of drugs before they hooked up the 46 hour drip. The lab work was encouraging! The CEA tumor maker did not go up but decreased by one point. That is another answer to prayer. We continue to pray that the liver numbers will improve although Lois is not experiencing any negative symptoms from the less than optimum liver function.
Lois is doing exceptionally well. She deals with the “chemo cold,” the need for more sleep, and is careful about pacing herself. If you were to observe her from day-to-day for a week, you would most likely conclude that Lois is not limited by the cancer or the treatments. She spends a lot of time with our six grandkids, cleans, does laundry, cooks – all the things she loves to do. Although cancer has impacted her life, she has not stopped living!
Yesterday, February 4, 2009, we spent 9 hours at the University Hospital. We took care of the check-in process at 6:30 and Lois started drinking the “glow juice” for the CT Scan about 6:45. By 8:30 the CT Scan was done and we began waiting to get blood drawn (they use Lois’ port) for the lab work. We met with Dr. Halfdanarson , the attending Oncologist we have been working with since June, and learned the CT Scan didn’t reveal much to him. The radiology team will look at the scan and finalize a report within the next 3-4 weeks and could come to a different conclusion.
Lois’ CEA number went up again. (CEA stands for Carcinoembryonic Antigen and is a type of protein molecule that can be found in many different cells of the body, but is typically associated with certain cancers.) The CEA number has gone from 4.8 in November, to 7.9 on December 24, 10.1 on January 21, and yesterday was 15.1. This indicates that cancer is growing somewhere – the logical conclusion is the liver – but we don’t know for sure.
We made no changes in the Chemo “cocktail.” There just isn’t enough data to make decisions. The Infusion Center was busy and we didn’t get the drips started until almost noon. Lois had her “fanny pack pump” hooked up and we left about 3:30 to drive home. Lois is tired and the neuropathy in her hands and feet is there all the time; she has the “chemo cold” – lots of sinus drainage, but those continue to be the extent of her reactions to the drugs. We are very thankful for this and recognize God’s generous gift of grace in this area.
Dr. Halfdanarson placed Lois in a new study which involves taking some of the frozen tissue from the tumor they removed last May and sending it to a lab in California. They grow cultures and then test different Chemo drugs to determine reactions and efficacy. We should start seeing information from that study in 6-8 weeks and may make adjustments to the Chemo “cocktail” based on that data.
The Oncology team and Infusion Center staff assure us we are doing everything possible to try to stay ahead of the cancer. Living in the ambiguity of knowing that cancer is on the move in Lois’ body but not being able to do anything about it –yet – is difficult. “But we trust in you, O Lord; we say, ‘You are our God.’ Our times are in your hands . . . “ (Ps 31:14-15)
Thanks for your continued love and prayer.
On January 21, 2009, her birthday, Lois received Chemo Infusion #15. The IV drips and “fanny pack” pump delivered the drugs without any surprises. Lois continues to deal with the “chemo cold,” continuously dripping sinuses and a cough, and the neuropathy in her hands and feet but those are slight inconveniences compared to the side effects others experience.
The blood work on Wednesday did show an increase in the CEA number. (CEA stands for Carcinoembryonic Antigen and is a type of protein molecule that can be found in many different cells of the body, but is typically associated with certain cancers.) The CEA number has gone from 4.8 in November, to 7.9 on December 24 and is now 10.1. The result of this finding is that the next full exam, CT Scan, lab work, and consultation has been moved up a month to February 4. Hopefully we’ll find out what this means. Conventional wisdom indicates that something is changing with the tumors or in some lymph nodes.
Thanks for praying!
We drove to Iowa City late in the afternoon on Tuesday. The weather forecast was for more snow that night and we didn’t want to try to drive that distance in order to be at the University Hospital at 7:30! We woke Wed to 2 inches of snow on top of a skim of ice. The trip from the hotel to the hospital was interesting. . .
Lois drank the first installment of “glow juice” for the CT Scan at 7:30 and the second at 8:20. By 8:45 we were in the Oncology clinic waiting for her labs to be drawn. Then it was the wait for the CT Scan to be “read” and the lab work to be completed.
When we compared the CT Scan from 8 weeks ago to the new one, there were some slight but seemingly insignificant changes. The lab work indicated the CEA count had moved from 4.8 four weeks ago, to 7.9. However the Drs indicated this happens sometimes during a treatment regimen and they didn’t seem too concerned.
At the last testing and consultation the end of October, it was decided to change the Chemo “cocktail” by subtracting the Oxaliplatin and the bolus of 5FU. Now the Drs. have added the bolus of 5FU back to the “cocktail” for the next four Chemo infusions. That bolos has never resulted in any side effects that we know of and is a relatively quick (3 minute) injection at the end of the three hour drips of Leucovorine and Avastin. Lois continues to have the 5FU pump for 46 hours. Home health care comes to the Infusion unit to “hook” her up and also seems to arrive at our house on time to “unhook” the pump. Or, as we jokingly refer to this, Lois is ported and deported every two weeks!
Thanks for your partnership in prayer.
Have a great celebration of Christ’s birth!
Today Lois received Chemo Infusion number eleven. The first thing that happens when we arrive at the UIHC (University of Iowa Hospitals and Clinics) is lab work. An RN accesses the port in Lois’ upper right chest and draws blood. She is weighed, her blood pressure is taken and they update her general condition during the past two weeks. All this data is used to prepare and adjust the amounts of Chemo drugs and the length of time required to infuse them into Lois’ system.
The Lab work on the blood is especially important as it produces a report which covers thirty different items. One of the blood reports the oncology team is specifically interested in is the CEA number. CEA stands for Carcinoembryonic Antigen and is a type of protein molecule that can be found in many different cells of the body, but is typically associated with certain cancers. Lois’ CEA level was as high as 20 just a few months ago but in the past two weeks it fell to 4.8. That is within “normal” range!
Both the oncologists we saw were very pleased with that number – and so are we. This is a definitive answer to prayer. Not only have the tumors stopped growing, they are no longer throwing off carcinogens which show up in this CEA marker!
Lois continues to respond to Chemo without any major side effects – something that amazes the medical staff who attend to her every two weeks. We are scheduled for another Chemo infusion on Dec 10 and then on Dec 24 (that’s right, Christmas Eve!) we are scheduled for a major round of testing including a CT Scan and Oncology Team evaluation.
We are reminded that surgery to remove the tumors is still not an option and that we face Chemo infusions every two weeks for the foreseeable future. However, we are confident that God is using the wisdom of the medical community to accomplish His will in and through Lois and our whole family.
We ask you to rejoice with us regarding this good report even as you continue to pray.
