Last Wednesday we met with the doctor at the Bone Marrow Transplant clinic and found out that Eric's cancer had returned and was now Leukemia and terminal. It was a hard day, especially breaking the news to our our six children and four son/daughters-in-law.
Thursday Eric started on a 10-day course of low dose chemotherapy, to be followed by 10 days of radiation. For the past few weeks Eric has been feeling a lot of pressure and pain in his chest and back. During the day it was manageable, but it has been keeping Eric from restful sleep. The chemotherapy has now added some interesting gastrointestinal challenges.
We left the house at 7:30 this morning to head to LDS hospital. Eric's vital signs were taken and blood was drawn for lab work. The sweet nurse hooked Eric up right away to his chemo so that it would finish about the time we met with the doctor. She told us we would then be able to head home and enjoy the rest of the day. HAH!
The physician's assistant went through the lengthy checklist that is covered at each appointment. He was concerned to hear that Eric's chest pressure/pain was worse and that Eric wasn't sleeping well. Then the labs came back with the news that Eric's liver is not happy. We were supposed to wait to speak to the doctor but the weekly tumor board was running long, so the PA said we could go.
We had almost made it to our car when my cell phone rang. The meeting was over and the doctor wanted to speak with us. I hung up and my phone rang again and I found out we had been scheduled to meet with a gastroenterologist at 11:15 today. So we went back to the BMT clinic and visited with the doctor. At the tumor board they decided the chemo was too hard on Eric's liver, so after seven doses it has been discontinued. But not to worry, he said that a lot of times they just do five day courses of chemo. Instead, they want to start Eric's radiation tomorrow and they wanted us to meet with the gastroenterologist in just a few minutes.
The gastroenterologist decided that Eric needed to have an MRI, endoscopy, and fecal specimen analysis as soon as possible, with the possibility of a colonoscopy later. So instead of heading home we went to the radiology department. It was our lucky day. Two people were scheduled ahead of us, but neither of them was there yet, so they did Eric right away. The MRI was quite hard on Eric with his achy bones. We finally arrived home just after 3:00.
Tomorrow Eric has an endoscopy at LDS hospital in the morning and radiation at IMC (Intermountain Medical Center) in the afternoon. He will then have radiation on Friday. We will have Saturday and Sunday off (yeah!!!). Radiation every day next week, as well as labs and a clinic visit, and we finish off the radiation the following week.
The good news is that the chemotherapy is busy working in Eric's body as we speak, they are starting the radiation five days earlier than they had planned, and if there is something specific they find for the gastroenterologist to fix, he will do it right away. A few weeks from now Eric should be feeling a lot better.
We have appreciated everyone's love and support this past week. Your kind words and prayers have meant a lot to us.
From Eric:
Thanks to everybody for their faith and concern. The past week has underscored the wisdom in letting this disease run its course rather than pursuing heroic (low odds) remedies. Life takes on a different cast when you accept the reality that you will pass on to the next life sooner rather than later. I feel most grateful to have known each of you in the course of this journey. We shall see if the docs can establish a new and tolerable normal in the next few weeks that will make a few extra months worth it. I would just like a good night's sleep.
Wednesday, January 29, 2014
Thursday, January 23, 2014
First Bump is a doozy
I am sorry to have to report that Eric's cancer has returned and is now leukemia. I am also sorry to have to write such a long blog, but a lot has happened in a short time and I feel that I need to recount it all. Feel free to skim this as there is not a quiz at the end.
Eric has had an innocuous bump on his left rib cage since October. None of the doctors at the Bone Marrow Transplant Ccinic were concerned about it because it did not look like anything they had seen before, his numbers were good and he was doing great. It stayed the same for three months but suddenly started growing the end of December. With the BMT doctors' approval we had a friend who is a dermatologist biopsy it. Just this Wednesday we received the news that it was cancer.
Monday we were at the BMT clinic for a routine visit and we had the Physician's Assistant feel a small bump under Eric's armpit. She suggested we have our friend biopsy it also. Eric's blood work on Monday showed a decrease in his platelets. I had noticed last week that they were slightly lower than the week before.
Tuesday morning we were at the dermatologist's office, but the bump under Eric's armpit was too far below the skin for him to biopsy. Back home we called the BMT clinic and told them that he had suggested a surgeon or a scan were what was needed to find out more about the lump.
A short time later we received a call from the BMT clinic asking us to come in that afternoon so that Eric could have a bone marrow biopsy. The doctors meet every Wednesday morning to discuss in depth each patient, and they wanted the most up to date information possible for that meeting. They had a very hard time getting any bone marrow, which reminded us of how hard it was for them to retrieve marrow from Eric when this whole cancer issue came up last summer.
We had only been home a short time Tuesday late afternoon when we received another call from the BMT clinic asking if we could be there Wednesday afternoon to meet with the doctor to find out the results from the meeting that morning.
Wednesday afternoon we were informed that Eric's cancer was back, which we knew from the biopsy of Eric's ribcage lump. It is now leukemia. From the start we were aware that Eric's form of cancer was very aggressive. The chemotherapy in preparation for the stem cell transplant should have killed all the cancer, but it didn't. The stem cells took hold and were growing new bone marros, but the aggressive cancer was too strong for it and that is why Eric's hematocrit was taking so long to go up and why his platelet count had started to go down.
The doctor, who was so kind and attentive, explained that Eric had four options to consider. 1--inpatient aggressive chemo and another bone marrow transplant. This option only had a 5% chance of success. 2--inpatient aggressive chemo in the hopes that Eric would go into remission. This option had a 20% chance of success, but he would probably not stay in remission long so they would give him a mini bone marrow transplant, with not a great chance that it would take. 3--outpatient rounds of low dose chemo monthly that would keep the cancer from progressing for an indeterminate length of time, possibly a year or two. 4--do nothing and call in hospice.
As we talked with the doctor, the highest quality of life by far was for Eric to have the maintenance chemo and treat things as they come up. He doesn't want to be stuck in the hospital for another five weeks with such low odds for success. Once he starts the heavy chemo he would be quarantined again. We haven't seen our grandchildren since spring of 2013, and options 1 and 2 would keep us from seeing them for the next six months, and possibly longer because Eric's immune system would be so compromised. So our tentative plan was to go with option 3.
This morning at 6:30 Eric had a scan of his entire body. It picked up evidence of fluid in Eric's lungs with cancer in it, a suspicious gall bladder, an inflamed appendix, a large tumor in Eric's pelvic area, a few smaller areas of cancer, and the bump on his ribcage that started this whole process. This confirmed that Eric's cancer is aggressive and lowered the odds on the success of either option 1 or 2.
We were at the hospital until 3:30 today. We met with doctors, nurses, pharmacists, and radiologists. They started Eric on the low dose chemo today and he will have 10 straight days of chemo. As soon as he finishes that he will have 10 days of radiation on the tumor in his pelvis and on his ribcage. After that Eric will have a round of chemo every month from here on out. From what we heard today, the chemo and radiation will not have any significant negative effects and will have a positive effect on Eric's quality of life.
Surprisingly, it has not been hard to make the decision to go with option 3. Eric and I both feel very good about it. The heavy chemo and stem cell transplant in August was hard but well worth it. We have had a lovely few months with Eric feeling much better than he did last summer. We have had some great walks, some great talks, and even a day trip to central Utah to look at Indian rock art.
Our greatest concern is that those who have prayed for us will think that their prayers were not answered. We feel very strongly that your prayers on our behalf were answered in the most positive way. We have been aware of God's presence in our lives throughout this whole challenge. We know the Lord loves us. We know that He cares deeply what happens to us. He has sustained us and blessed us and given us peace. If you have children who have prayed for us, please let them know that we have appreciated their prayers. Help them to understand that our loving Heavenly Father heard their prayers, has blessed us greatly, and that this is His will.
We love you all.
Eric has had an innocuous bump on his left rib cage since October. None of the doctors at the Bone Marrow Transplant Ccinic were concerned about it because it did not look like anything they had seen before, his numbers were good and he was doing great. It stayed the same for three months but suddenly started growing the end of December. With the BMT doctors' approval we had a friend who is a dermatologist biopsy it. Just this Wednesday we received the news that it was cancer.
Monday we were at the BMT clinic for a routine visit and we had the Physician's Assistant feel a small bump under Eric's armpit. She suggested we have our friend biopsy it also. Eric's blood work on Monday showed a decrease in his platelets. I had noticed last week that they were slightly lower than the week before.
Tuesday morning we were at the dermatologist's office, but the bump under Eric's armpit was too far below the skin for him to biopsy. Back home we called the BMT clinic and told them that he had suggested a surgeon or a scan were what was needed to find out more about the lump.
A short time later we received a call from the BMT clinic asking us to come in that afternoon so that Eric could have a bone marrow biopsy. The doctors meet every Wednesday morning to discuss in depth each patient, and they wanted the most up to date information possible for that meeting. They had a very hard time getting any bone marrow, which reminded us of how hard it was for them to retrieve marrow from Eric when this whole cancer issue came up last summer.
We had only been home a short time Tuesday late afternoon when we received another call from the BMT clinic asking if we could be there Wednesday afternoon to meet with the doctor to find out the results from the meeting that morning.
Wednesday afternoon we were informed that Eric's cancer was back, which we knew from the biopsy of Eric's ribcage lump. It is now leukemia. From the start we were aware that Eric's form of cancer was very aggressive. The chemotherapy in preparation for the stem cell transplant should have killed all the cancer, but it didn't. The stem cells took hold and were growing new bone marros, but the aggressive cancer was too strong for it and that is why Eric's hematocrit was taking so long to go up and why his platelet count had started to go down.
The doctor, who was so kind and attentive, explained that Eric had four options to consider. 1--inpatient aggressive chemo and another bone marrow transplant. This option only had a 5% chance of success. 2--inpatient aggressive chemo in the hopes that Eric would go into remission. This option had a 20% chance of success, but he would probably not stay in remission long so they would give him a mini bone marrow transplant, with not a great chance that it would take. 3--outpatient rounds of low dose chemo monthly that would keep the cancer from progressing for an indeterminate length of time, possibly a year or two. 4--do nothing and call in hospice.
As we talked with the doctor, the highest quality of life by far was for Eric to have the maintenance chemo and treat things as they come up. He doesn't want to be stuck in the hospital for another five weeks with such low odds for success. Once he starts the heavy chemo he would be quarantined again. We haven't seen our grandchildren since spring of 2013, and options 1 and 2 would keep us from seeing them for the next six months, and possibly longer because Eric's immune system would be so compromised. So our tentative plan was to go with option 3.
This morning at 6:30 Eric had a scan of his entire body. It picked up evidence of fluid in Eric's lungs with cancer in it, a suspicious gall bladder, an inflamed appendix, a large tumor in Eric's pelvic area, a few smaller areas of cancer, and the bump on his ribcage that started this whole process. This confirmed that Eric's cancer is aggressive and lowered the odds on the success of either option 1 or 2.
We were at the hospital until 3:30 today. We met with doctors, nurses, pharmacists, and radiologists. They started Eric on the low dose chemo today and he will have 10 straight days of chemo. As soon as he finishes that he will have 10 days of radiation on the tumor in his pelvis and on his ribcage. After that Eric will have a round of chemo every month from here on out. From what we heard today, the chemo and radiation will not have any significant negative effects and will have a positive effect on Eric's quality of life.
Surprisingly, it has not been hard to make the decision to go with option 3. Eric and I both feel very good about it. The heavy chemo and stem cell transplant in August was hard but well worth it. We have had a lovely few months with Eric feeling much better than he did last summer. We have had some great walks, some great talks, and even a day trip to central Utah to look at Indian rock art.
Our greatest concern is that those who have prayed for us will think that their prayers were not answered. We feel very strongly that your prayers on our behalf were answered in the most positive way. We have been aware of God's presence in our lives throughout this whole challenge. We know the Lord loves us. We know that He cares deeply what happens to us. He has sustained us and blessed us and given us peace. If you have children who have prayed for us, please let them know that we have appreciated their prayers. Help them to understand that our loving Heavenly Father heard their prayers, has blessed us greatly, and that this is His will.
We love you all.
Thursday, January 16, 2014
First "Bump"
We enjoyed going two weeks without a visit to the Bone Marrow Transplant clinic. But we used our free time wisely and went to the dentist and opthamologist to have Eric checked for signs of Graft versus Host disease. He passed both exams with flying colors. We also had our dermatologist take a biopsy of the strange bump on Eric's ribcage. It has been present for several months, but hadn't changed until a few weeks ago--hence the biopsy.
The preliminary report is that the lump is a skin reaction to the bone marrow cancer. But it is not like what the doctors have ever seen before, so Eric's abnormality is abnormal. They are doing some more tests on the specimen and then will come up with a treatment plan for it. Quite possibly radiation, maybe something more as they decide what is going on. We wish it wasn't what it is, but such is life.
The great news is that Eric continues to feel better every day. His blood work numbers are good. They did a very thorough skin and joint examination today, and the PA commented that everything looked excellent. We go to the BMT clinic again on Monday because Eric's kidney function is a little off. They are tinkering with his medications, so they want to check how his kidneys respond to the changes. I will give updates as we hear more.
The preliminary report is that the lump is a skin reaction to the bone marrow cancer. But it is not like what the doctors have ever seen before, so Eric's abnormality is abnormal. They are doing some more tests on the specimen and then will come up with a treatment plan for it. Quite possibly radiation, maybe something more as they decide what is going on. We wish it wasn't what it is, but such is life.
The great news is that Eric continues to feel better every day. His blood work numbers are good. They did a very thorough skin and joint examination today, and the PA commented that everything looked excellent. We go to the BMT clinic again on Monday because Eric's kidney function is a little off. They are tinkering with his medications, so they want to check how his kidneys respond to the changes. I will give updates as we hear more.
Thursday, January 2, 2014
Happy New Year
Prepare to be amazed! Today was our weekly Bone Marrow Transplant clinic appointment. It was on Thursday because they were closed, except for emergencies and inpatients, for New Year's Eve and New Year's Day. Eric's hematocrit is now 30.6! This is incredible news. It hasn't been this high for over six months, except for a couple of hours after each blood transfusion.
Also, we were told that Eric is doing so well we can skip next week's appointment and start going every other week. This is huge! Those early morning drives to LDS Hospital once a week were tedious. As 2013 came to a close Eric and I reviewed our daily journals and day planners. The abrupt change in our schedules between May 29 (before the cancer diagnosis) and May 30 ( the day Eric's primary care physician tested his blood and told him he had something severely wrong, probably bone marrow cancer) is startling. Cancer takes over your life! We have felt spoiled only going to the BMT clinic once a week. Next week will be the first week in over six months that we haven't had Eric's blood tested or had to go to a cancer related appointment.
Also, we were told that Eric is doing so well we can skip next week's appointment and start going every other week. This is huge! Those early morning drives to LDS Hospital once a week were tedious. As 2013 came to a close Eric and I reviewed our daily journals and day planners. The abrupt change in our schedules between May 29 (before the cancer diagnosis) and May 30 ( the day Eric's primary care physician tested his blood and told him he had something severely wrong, probably bone marrow cancer) is startling. Cancer takes over your life! We have felt spoiled only going to the BMT clinic once a week. Next week will be the first week in over six months that we haven't had Eric's blood tested or had to go to a cancer related appointment.
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