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.
Wednesday, July 18, 2018
Sunday, June 24, 2018
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.
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.
Sunday, June 10, 2018
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.
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.
Sunday, June 3, 2018
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.
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.
Sunday, May 27, 2018
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.
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.
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| Still the same with just a little less hair. |
Sunday, May 13, 2018
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.
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.
Saturday, May 27, 2017
Homeward Bound
May 5, 2017 (Fri)
We left our condo about 9:45 am and traveled to Gainesville, Virginia where Yvette had reserved us a room at the Hampton Inn. It rained for the first hour then it cleared up. We arrived in Gainesville at around
12:30 pm. The room was not yet ready so we celebrated Cinco De Mayo by eating lunch at Uncle Julio's Rio Grande
Café, a Mexican restaurant. We then went on to Wendell and Yvette's place in Warranton. Yvette had to work so Wendell, Diane and I went to visit Doug and Linda in Chantilly. They had a wonderful meal for us and then we had a nice visit, remembering "the good old times" growing up.
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| This looks serious |
May 6, 2017 (Sat)
Tonight was our night for baseball. We went with Wendell and Yvette to Baltimore to see the Baltimore Orioles play the Chicago White Sox at Camden Yards.
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| Camden Yards |
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| True orange Oriole fans |
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| Another Oriole fan in line to eat |
The game was delayed almost an hour because of rain. Fortunately the rain let up and we were able to watch the game. It was cold though. Diane had on 4 layers of shirts and sweatshirts, my coat on her lap, and a blanket on top of that.
Getting ready for the game after rain
The game was a lot of fun. We can see why Wendell and Yvette are such fans. The Orioles beat the White Sox 6 to 5. |
| Manny Machado at bat |
May 7, 2017 (Sun)
This
morning there was an Area Conference Broadcast for all of the North America Northeast Area. We attended with Wendell and Yvette in their building. The first part of the conference was conducted by the stake. Wendell led the music and Yvette played the organ for this part. Elder Gong was conducting and was the first speaker,
then Sister Cordon spoke followed by an area seventy. Elder Dallin H. Oaks was the concluding speaker. He spoke about Faith
as the first principle of the gospel. He said that faith prepares us to deal
with whatever life brings. He also said to do your best and trust in the Lord's
timing. After conference we went to Wendell and Yvette's for a nice meal. We left about 2:30 pm to
head for Indiana. We went through five
states: Virginia, West Virginia, Maryland, Pennsylvania, and Ohio (We went in
and out of West Virginia three times). We finally ended up in
Cambridge, Ohio for the night.
May 8, 2017 (Mon)
We drove pretty much
straight through to Indiana today. We stopped in Nashville, Indiana for a brief rest stop. Nashville is a nice little "artsy" town with a lot of fun shops.
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| Diane in Nashville |
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| Is this what you mean by rest stop? |
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| Life really is good |
We arrived at Andrea and Jason's about 3 pm. Jason was just leaving for a therapy session so we had some time with Hanna. Kamary and Alyssa came home around 3:30 pm and
the rest of the kids were home by 4 pm. Andrea got home a little after 4:30 pm.
We had a nice visit.
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| Strange mother/daughter ritual |
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| Kohler on the computer |
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| Kamary on the computer |
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| Alyssa on her iPad |
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| Hanna on her iPad |
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| Brynlie, the cut-up |
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| Is Lauren actually reading a book? |
In spite of living in an electronics world we had time for face-to-face talks and hugs. We had dinner and then Family Home Evening. The kids
shared their talents with us. They are doing a good job.
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| Kohler playing his own composition on the piano |
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| Brynlie singing with the guitar |
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| Kamary and her monologue |
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| Lauren plays the violin |
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| Alyssa plays the cello |
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| Family Home Evening with the Smiths |
May 9, 2017 (Tue)
By the time we got up this morning (about 7 am) Kamary and Alyssa were already gone. Andrea had her English session on line. She is a coach for Chinese students learning English. She really enjoys it.
By the time we got up this morning (about 7 am) Kamary and Alyssa were already gone. Andrea had her English session on line. She is a coach for Chinese students learning English. She really enjoys it.
We were off by about 8:30 am. It was hard to say goodby. We took
I-70 to St. Louis where we stopped to see the Gateway Arch. It commemorates the westward expansion of America in the 19th century. Many of the explorers and pioneers left from Saint Louis to go west.
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| Gateway Arch in Saint Louis |
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| Oldest church in the region |
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| Inside the church |
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| Diane at the arch |
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| Arch in the sky |
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| Leaning over to watch out the arch window |
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| View of Saint Louis from the arch |
While we crossed Missouri we listened to the
lectures on the brain. We continued to St. Joseph where we spent the night.
May 10, 2017 (Wed)
Today was a long day across Nebraska. We drove all day, stopping in Kearny for
lunch. We listened to the book
"Dragon Watch" and the lectures on "Understanding the Brain"as we traveled.
We stopped in Cheyenne, WY for the night.
May 11, 2017 (Thu)
Today we crossed Wyoming, arriving home about 4 pm. We stopped at
a rest area and saw a sign for a historical site for Fort Steele. We went and
looked at the ruins. It was once a pretty good sized complex. It was a fort used to protect the railroad.
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| Fort Steele historic site |
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| Fort Steele ruins |
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| Building reconstruction in Fort Steele |
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| Display inside the building |
We stopped at Little
America for an ice cream cone. We then continued on home.
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| Bear Lake was very full after this heavy winter |
This was quite a trip. It is good to be home.
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