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.