Beginning of Phase 2

We now begin the second phase of Paul's cancer treatment. He had several tests after the last round of chemo. He had a PET scan and CT scan that were both clear. He had an echocardiogram and a pulmanary test that were both good and another bone marrow biopsy that was clean. The Doctor Reese declared Paul to be in remission on August 21, 2018. 

We went to Salt Lake City on August 24th and checked into Hope Lodge. We went to LDS Hospital and saw the doctor that afternoon (she is Brazilian and they enjoyed speaking Portuguese together) and then Paul started getting shots on Saturday to build up the marrow.

Paul had to be fasting from midnight on Sunday night (26th) and Monday morning. We went to the hospital at 8:15 for Paul to get a shot that helps to build up his marrow. It took 2 hours before we were finished there. We then decided to go to the Church art museum. It was nice to be able to be in a quiet place with nice things to look at for a while. They have redone it and it is very nice. They are still getting an area for President Monson in the Presidents gallery. We then went back to Hope Lodge for a brief rest and for me to get something to eat before going to the hospital again. Paul was to be at the hospital at 12:30 for the removal of the port he has had and for them to put in another port for the transplant. He now has a port that has three "pigtails" or lines coming out. It was almost 2 pm when they finally took him in for the change of ports. The doctor said that it would take about 25 minutes with 2 hours of recovery and observation. I waited and waited in the area where they would bring him too. His nurse even came in and wondered where he was. It ended up that it took 45 minutes and then they kept him there for a while. When they finally brought him back we had to tell them that we needed to be on the 7th floor at 5 pm for another shot that helps the blood to release the stem cells. These shots are given in the stomach. The 2 hour recovery ended just in time to go up for the shot. After the shot he had to wait a half hour to see if there was a reaction to the shot. She finally let us go about six pm. It was a longer time in the Hospital than we had anticipated. 

The next morning was the day of collection of stem cells. We had to be there at 7 am. They did some blood tests and determined that Paul did not need the shot that morning. his white cell count was high enough. They then started the collection process. It is a four hour process. He finished a little after 1 pm. We went back to the Lodge to grab a quick lunch before the cleaning crew came in to clean the kitchens at 2 pm. We then relaxed in the room. We had to go back to the hospital to find out the results of the days collection and to see if he needed another shot. We were to be there at 4:45 pm but we did not get the results until 6 pm. They want to collect between 5 and 10 million stem cells and they got 6.96 from Paul. That meant that we did not have to come back the next day for more collection and we could go home on Wednesday and not have to stay until Saturday September 1st. It was so nice to get back home although we were really tired. 

Our schedule now will be to go back to Salt Lake on the 12th and check into Hope Lodge for two nights. On the 13th Paul will see the doctor and he is supposed to rest that day so that he is well rested for the procedure. On the 14th they will admit him to the hospital and start him on a six day round of mega chemo. The transplant will be on the 21st. Then he is in the hospital while his immune system recovers. I will have to figure out where to stay because I can't stay at Hope Lodge while Paul is in the hospital. There are a few options; there are healing homes which the hospital owns and are right across from the hospital and are $50 per night. We are on a waiting list. There are hotels that will give a hospital rate but some of them are out by the airport. I could also stay with our nephew Ken. They live in South Jordan so it would be a commute of about a half hour. I don't know what I will do yet; I would like to be close but we will see. He will be in the hospital until about the 8th of October then we can be in the Hope Lodge again for the two week follow up. The next two months are going to be wearing. 

Round 6

Paul has now finished his chemo treatment with this 6th round. This is the end of phase 1 of his treatment. He has done very well with the treatments. At the beginning he was given two kinds of nausea medicine and he has used none of them. The doctor told him this week that he is very unusual in how he has responded to the treatment. He has had a few side effects like hair loss, fatigue and losing some toe nails. They said that is normal for chemo. He also had some neuropathy in his fingers and toes so they cut back on the chemical that causes that problem and then finally cut it out all together. He is getting some feeling back and is hoping that it will eventually all come back.

We now move on to phase 2 which is a bone marrow transplant. This needs to be done in Salt Lake City at LDS hospital. This is the schedule:

Testing (Ivins)
Week 1 (Aug 12-18)
          Aug 13 ( Mon) - protein diet
          Aug 14 (Tue) - Tests
                    AM Pet scan, echocardiogram, pulmonary
                    PM Blood draw
          Aug 16 (Thu) Bone marrow biopsy

We will be taking Kamary to Logan to attend USU between the testing and the doctor.

Dr. Reese (Ivins)
Week 2 Aug 21 (Tue)  Lab work and consultation check up

Collection of Bone Marrow
          Aug 23 (Thu) to SLC for conference
          Aug 24-25 (Fri-Sat) - priming
Week 3 (Aug 26-Sep 1) SLC
          Aug 26-27 (Sun-Mon) - priming
          Aug 28-Sep 1  (Tue-Sat - Collection of bone marrow

Break (Ivins)
Week 4 (Sep 2-8)
          Sep 2 (Sun) Return to Ivins

Hospital (SLC)
Week 5 (Sep 9-15)
          Sep 9 (Sun) to SLC
          Sep 10 (Mon) - check into hospital
          Sep 11-15 (Tue-Sat) - chemo
Week 6 (Sep 16-22)
          Sep 16 (Sun) - chemo
          Sep 17 (Mon) - transplant (start of 100-day recovery)
          Sep 18-22 (Tue-Sat) - recovery
Week 7 - Week 8 (Sep 23 - Oct 6) - recovery in hospital

Follow-up (SLC) outpatient clinic
Week 9 - Week 10 (Oct 7 - Oct 20)

Convalescence (Ivins)
Week 11 - Week 20 (Oct 21 - Dec 26) end of 100 day recovery.

Some of these could be shorter depending on how things go. For example they plan 5 days for the collection but they may be able to get it all in one day. It is like donating blood where they separate out the bone marrow and return the blood to Paul. We will just take it one day at a time.

When the decision was finally made by the doctors to go ahead with the bone marrow transplant Paul felt it was right thing to do. We have been greatly blessed through this whole process. All things are in the hands of the Lord.

Round 5

Paul had his 5th round of chemo July 10th through 12th. He handled it well just as all the other times. We were looking forward to meeting with the doctor but he was on call so we met with the physicians assistant. Paul had another CT scan a couple of weeks before and there were a couple of things we were wondering about that showed up on the scan. One was a cyst on the liver and another was a possible blood clot that was close to the liver. We were told that the cyst was nothing to worry about; it had nothing to do with the cancer, that liver cysts come and go and are no problem. The clot was related to the chemo but it was not blocking anything and did not pose a problem.

Paul mentioned that the neuropathy in his fingers and toes was doing better but he really felt it with his round 4 treatments. The physicians assistant decided to take out that chemical (the O part of CHOEP). Paul says that he thinks he is getting more feeling back in his fingers and toes.

We found out that we will be doing the bone marrow transplant and we are in the process of scheduling the tests and time of the transplant. It will mean at least a month stay at LDS hospital in Salt Lake. Right now we are saying that we will cross that bridge when we get to it.

We are so thankful for the many blessings we have been given through this process. We are thankful for doctors who care.

Round 4

This week was round 4 for Paul. He did well. They always do blood work first before he sees the doctor to make sure that he can have the chemo. So far things have been okay. He still has not been sick and can do most of what he wants. He does get tired faster. He went to help a neighbor that was moving and then had to rest for the rest of the morning. He doesn't lift real heavy things (he let the younger ones do that) but he did carry smaller boxes upstairs from their basement.

He will be going in this week for a CT scan to see if there are any signs of cancer. That may have a bearing on whether or not he will have a bone marrow transplant.

A Bone Marrow Transplant?

Friday June 8th we met with a physician assistant and doctor from the bone marrow transplant team in Salt Lake. They reviewed Paul's medical history and gave him a physical checking to see if they could feel any enlarged lymph nodes. Everything was good. The doctor then talked to us about what is involved with a bone marrow transplant. It would mean going to Salt Lake for about six weeks. Some of the preliminary tests could be done here but most of it would need to be done in Salt Lake. They would first have to collect the bone marrow and test it to make sure it is clean. That takes about 2 weeks. They like to do another biopsy of the bone marrow between the 4th and 5th rounds of chemo and if it is good they may collect it at that point. The next step is to be in the hospital for about 4 weeks. They would have to give him a mega dose of chemo to kill off all the bone marrow and then they would replace it with his own marrow that they had collected. He has to stay in the hospital until his marrow gets to where it is making blood and the white and red cell counts are up. It will mostly be a matter of watching him and if anything unexpected happens they are there to take care of it. He would have to have some blood transfusions. It all sounds very complicated.

We asked the doctor how he felt about Paul receiving a bone marrow transplant. His bias was that it may not be necessary. The reason for that is that overall Paul is quite healthy although his age puts him on the higher end of those they give transplants to. That means that he is almost too old although the doctor said they had done one on an 80 year old man and he did well. They usually like to do it in younger people. Paul's tests (bone marrow, CT scans, and PET scan) have all been clear and don't show any hot spots for cancer. There is the possibility that the surgery got everything. This makes it hard to know what should be done. The doctor is going to consult with his team and with other experts across the country to see what they would recommend. Paul is mentally ready for a transplant but in many ways we hope that it will not be necessary.

The doctor said that Paul is an unusual case. The first thing is that he has been on a strict gluten free diet for 26 years and did not knowingly take in gluten. The next is that this is a very rare cancer and no one really knows how to treat it. The third thing is that apparently it was found early because most cases of this type of cancer the patient was in a lot worse shape and the cancer was farther along. For these reasons we are hoping that the bone marrow transplant will not be necessary. We pray that the doctors will be guided in what is best. I also pray that Paul will be able to receive guidance as to what is best for him to do.

Round 3 Halfway Through

This week was round three of chemo. Paul has reacted pretty much the way he has from the beginning except that he gets tired more often and faster. He carried some pictures in from the garage to see where I wanted to put them and that was about the extent of his energy for the day.

Tuesday was the first day of chemo this week. Paul goes in for blood work first then he talks to the doctor and then he has the chemo. The cancer center is kitty corner from the temple and Tuesday is a long day for chemo so Paul dropped me off at the temple so I could go through a session while he was getting chemo. When I finished and walked over to the cancer center I discovered that they were just starting the chemo. The machine had not worked for the blood analysis so they had to wait for that first. They eventually got it working but that is why they were just starting when I got there.

In visiting with the doctor Paul mentioned that his fingers were numb. The doctor decided to cut back 45% on the O=vincristine. Since doing that Paul thinks that he has more feeling in his fingers. This is something that could become permanent so we are trying to prevent that.

Paul is in good spirits and from outward appearances you would not know that he has a very bad disease. This next week we will be learning about bone marrow transplants. Stay tuned.

Organizing, Hair Loss and Fatigue

It has been a couple of busy weeks. Even though we are in the house there are still little things that need to be done. One of those things is organizing the different rooms in the house. The music room was an all day job and very tiring for Paul. We also organized the sewing/office and he had to take breaks to rest. It is hard because he is so used to pushing until a project is finished. That is harder for him to do right now.

He also forgets to get a snack. He is supposed to eat about six small meals a day but most of the time he forgets. He is constantly hungry but gets busy and forgets to have something. In spite of the low energy He is doing quite well. He still has energy to walk in the mornings but not as far as we used to walk.

He has lost about half of his hair but it fell out evenly all over so he is not bald. The hair is not growing and mainly it is only the white hair that is left. He is looking a little more like his dad except he has more hair on the top of his head than his dad did. He also doesn't have to shave everyday. His clothes are too big but he is staying right around 171 to 173 lbs. He says that his fingernails are being affected by the chemo. Round 3 is this coming Tuesday, Wednesday and Thursday. The doctor thinks he will handle things well since he did so well with the first round. He was given a blessing by our Home Teachers/Ministers just before his first chemo that said his body would be able to adjust to the circumstances. We feel that this is what has been happening with him. We are so thankful for these miracles in our lives at this time.

Still the same with just a little less hair.

A Bend in the Road

Since returning from our mission to Brazil we felt the need to get into a home that was on one level. Paul asked "if anything were to happen to me what would you want?" and I said "I don't want to be in this house." The stairs were getting to be too much for us. Thus started our search for a new home. Little did we know how soon it would be needed.

Just after Christmas 2017 Paul started to mention that his stomach was hurting. We had been to Washington State for Christmas and wondered if he had been contaminated with gluten while on the trip. I soon left to go be with my sister who was going through some cancer treatment and when I returned home we were scheduled for a cruise to Hawaii. We left on the 17th of January and flew to San Diego and boarded the ship. We had five days of cruising before reaching Hawaii. The next morning on the ship Paul said that he did not feel well and didn't feel like eating. He thought that maybe he was sea sick (although he had never been sea sick before). He would then feel better by evening. During the day he would be tired and want to rest more. We enjoyed the cruise but this was one cruise where he did not gain any weight. He would try to eat but would not feel well after.

After we arrived back home the feelings continued so he went to see the doctor. An x-ray showed a lot of bile so the doctor treated him for constipation. That did not help so the next step was to check the gall bladder. He had an ultrasound of his gall bladder, pancreas, liver and kidneys. Everything was fine with those organs. The next step was to go to the gastrointestinal doctor. They could not see him for a month and that was for a consultation. In the meantime he was feeling more pain when he would eat.

On Sunday morning March 18, 2018 he asked if I thought he should go to the emergency room. I said yes! He had not slept all night and was in a lot of pain. They took us right in and got him ready for a CT scan. After the scan we waited about half an hour before a doctor came in and introduced himself as the surgeon. He showed us the scan and it showed that there was a bowel blockage. They put a tube down his throat so they could pump his stomach and get it ready for surgery. The surgery took place the next day, Monday. They were going to do it laparoscopically. When it was over the doctor talked to me and told me that they could not do a laparoscopy because there were two places that were blocked so they did surgery where they took out about 12 inches of small intestine. They also removed three hard lymph nodes.

They biopsied the nodes and the mass and the result was enteropathy associated T-cell lymphoma. It is a non-Hodgkin lymphoma. It is a rare cancer that is found in people with Celiac Disease. It attacks the small intestine. This was not the news we were hoping for but we have had peaceful feelings and many tender mercies through all this. Dr. Gregg Marshall was the surgeon and we were very pleased with his care of Paul.

We then began a whirlwind of meetings and tests. We had a meeting by video conference with the oncologist in St. George since we were moving in a few weeks and that is where most of the treatment will be. They did a bone marrow biopsy, and PET scan and an echo-cardiogram. It was decided that the course of treatment would be CHOEP. C=cyclophosphamide, H=hydroxydaunorubicin, O=oncovin (vincristine), E=etoposide and P=prednisone. It is some pretty bad stuff and is not usually given to someone over 66 years of age. Paul was healthy enough that they felt they could use this regimen. The etoposide has to be given over three days because it needs to be given slowly. After that they put a Nulasta device on his arm that injects a chemical to help strengthen the bone marrow. It puts a thin catheter into his arm and then after 27 hours it injects the fluid. It can cause bone pain so he takes Claritin to help with that.

The bottom line is that this cancer is rare enough that they don't really know how to treat it. They are hoping to hit it hard and see what happens.

Paul had the first round of chemo in Logan and it went well. He did not get sick and was still able to help with some of the packing for our move but not with the lifting. Mainly he felt that he did not have as much energy as normal.

We moved to Ivins in between treatments. We were able to move into our new home on May 4th. Paul's next treatment was on May 8-10th. He did well with the second treatment but is even a little more tired. He also started to lose his hair. He noticed something on the floor of the shower and discovered that it was hair. He then took a handful of his hair and a lot came out. All of the hair that had some color to it came out and now he has white hair that is quite thin.

Our life is now on a new and unexpected course. We have had some miracles and tender mercies throughout our move and the treatments. We are positive and have hope for the future.