Two months ago today, on May 30, Eric stood up quickly at work and almost passed out. He had been feeling tired for the past couple of months and I had been pushing him to go to the doctor. On impulse Eric picked up the phone and called his doctor, asking if he could be seen as soon as possible. Twenty minutes later Eric was at the doctor's office and they were drawing blood for lab work. Eric went back to work after the exam and as he was leaving the office to come home that night, his doctor called and told him that the blood work showed that something was severely wrong. Eric was to go see a hematologist oncologist first thing the next morning for a probably diagnosis of bone marrow cancer.
And with those words our life has changed. The first few weeks Eric was in pretty good shape and continued to swim a mile in the morning and go to work. He even walked an hour at noon a few more times. This cancer thing didn't seem all that bad. Even when the doctor told Eric he couldn't swim anymore because of the risk of infection from the less than sanitary pool water, it didn't seem that bad because now we could walk together in the morning for 45 minutes to an hour.
Things started to go downhill pretty fast after those first few weeks. Eric's pain increased, his mobility decreased. Our walks became shorter and shorter, finally stopping altogether. Soon Eric was on morphine, and then double doses of morphine to fight the constant pain associated with having twice as much bone marrow in the bone marrow cavity as there is supposed to be. Bones don't stretch and grow to accommodate cancer like other areas of the body do. Twenty-four hours a day Eric moved from place to place, trying to find a comfortable spot to rest. He was chronically sleep deprived, never getting more than 30 to 40 minutes of rest at a time. Eric was pretty low a couple of weeks ago, almost zombie like he was so tired, so drugged out, so fatigued and in so much pain.
July 18 Eric was admitted to LDS hospital to get an emergency transfusion of three pints of whole blood. That was a turning point for him. He really felt rejuvenated after the transfusion and his red blood count stayed up for a remarkably long time.
July 20 Eric was stable enough that they could start his second round of low dose chemo. Within just a couple of days Eric was feeling so much better that he cut his morphine dose in half. He regained some of his mobility and flexibility as the chemo stopped the cancer from progressing. We started walking again and increased the distance on good days. Eric started sleeping for longer periods of time and was able to stay awake for longer periods during the day.
July 22 we received the fabulous news that Eric's sister Debbie was a match! Before the transfusion on the 18th and the start of chemo on the 20th, Eric wasn't sure he could make it long enough for a match to be found. We were pretty discouraged. So to find out that we had a match and to see Eric feeling better, we felt that our prayers had been answered in the best possible way.
Yesterday morning our coordinator called to say that she was busy lining up all the things that needed to be put in place, and should be able to give us a timeline for the bone marrow transplant in a couple of days. Hooray! We know that the next few months are going to be very difficult and push us to our very limit, but we are eager to get started.
Right now the most worrisome thing is Eric's platelet count. He is
having platelet transfusions every few days, but the numbers keep free
falling lower and lower. We are so appreciative of all those wonderful
people who donate their blood and their platelets. They are heroes!
Eric honestly would not be alive if it weren't for them.
We are grateful for the many kind visits and calls and emails and cards. We are grateful for the wonderful food that has been shared with us. Eric may be losing weight, as is common with cancer, but it is not for lack of delicious food. We are grateful for all of your prayers on our behalf. It means so much to us! We could not do this on our own. We feel very loved and very supported, both by our family and friends, and also by the Lord. We know that we are not alone during this trial and are humbled at the mercy and grace of the Lord.
From Eric: Interesting read! I missed a lot of this over the past several weeks. Nice to read what ML has to say to see how the Lord has carried me and how each of you, from the incomparable MaryLynn on down the list, have lent to me your faith and your service, your kindest thoughts and love to bear me forward in an hour of great weakness. God bless each of you. ECO
Tuesday, July 30, 2013
Friday, July 26, 2013
Last day of chemo
Today Eric finished his second round of less aggressive chemo. He has done really well with it--no nausea or other problems. In fact, he is feeling stronger and is in less pain than when he started the chemo last Saturday. Eric has reduced the amount of painkiller he is taking, which makes him much more alert and communicative. Tomorrow Eric is receiving a platelet transfusion and then we don't have any medical procedures on Sunday. That will be our first day off since July 17. Cancer takes over your life.
People have wondered when Eric will receive his bone marrow transplant. We are wondering the same thing. Our doctor has told us not to be impatient because it is a complicated process that takes a lot of coordination and has numerous steps before it happens. Our best and most optimistic guess is in a couple of weeks. We have received notification that our health insurance has approved the transplant. That was good news. Eric's sister had blood drawn yesterday in California and it is being run through a series of tests.
Hopefully we will have more information sometime next week. Until then, have a great weekend and look for ways to help others have a great weekend also. Enjoy every moment of time you have with your loved ones. Give a friend a hug. Sign up to donate blood or be a bone marrow donor. Count your many blessings. It is a beautiful world we live in!
People have wondered when Eric will receive his bone marrow transplant. We are wondering the same thing. Our doctor has told us not to be impatient because it is a complicated process that takes a lot of coordination and has numerous steps before it happens. Our best and most optimistic guess is in a couple of weeks. We have received notification that our health insurance has approved the transplant. That was good news. Eric's sister had blood drawn yesterday in California and it is being run through a series of tests.
Hopefully we will have more information sometime next week. Until then, have a great weekend and look for ways to help others have a great weekend also. Enjoy every moment of time you have with your loved ones. Give a friend a hug. Sign up to donate blood or be a bone marrow donor. Count your many blessings. It is a beautiful world we live in!
Tuesday, July 23, 2013
Grateful
We are still in shock that we have a match. We are so very grateful for the tremendous blessings we have received in the last few months. We have had a lot of great discussions and many insights as we have traveled this crazy cancer path.
Several people have asked about Eric's sister, so I thought I would introduce you to his family. Eric is the oldest of eight children. From the moment I first met them 37 years ago I have been impressed with how kind, gracious and supportive they are. Eric's parents welcomed me fully and without qualification from the start back in the summer of 1976 and have always made me feel a very welcome part of the family.
Eric has a sister that just had her port removed after her successful bout with breast cancer. She is the only sibling that lives in Utah, but she was not eligible to be a donor. The remaining six, despite their busy lives and multiple responsibilities and obligations, volunteered to be tested and to be donors if they matched. They knew it would not be easy because it would require travel, time and expense, but they all hoped that they would be the match.
As it turns out, it is probably a good thing that only one, Eric's sister Debbie who live in California, was a bone marrow match. All wanted to help but we only needed one match. Eric would have been overwhelmed in choosing between good samaritans. We are so grateful to Debbie for her persistence in getting her cheek swab to LDS hospital to be tested. Several things went wrong, but she kept at it and pushed this forward.
For the past few months I have been in the very unusual position of being able to walk as fast as Eric, and now I can walk faster than him! I have spent the past 37 years trying to catch up with him. I have one worry about Debbie being the match. She has so much energy and fire that once her stem cells take hold and start to multiply in Eric's bone marrow cavities, I will once again be the tag along. I will not have a chance with the two of them combined!
I am looking forward to be left in their collective dust! Thank you Debbie. Thank you Grandpa and Grandma Olson for rearing such a faithful, generous and kind family. Thank you to (siblings) John, Susan, Beth, Debbie, Mary Ann, Bruce and Shauna for all your love and support through the years and especially at this time. I love you!
From Eric: It may sound a bit trite but, in this business of love, support, service and healing, aren't we all matches in a way? Debbie will provide the physical assistance but I do not doubt from the events of the last 60 days that any number of you would do the same if you could. She stands proxy for such a depth of love and kindness. There is great strength in knowing that we all do "match."
Several people have asked about Eric's sister, so I thought I would introduce you to his family. Eric is the oldest of eight children. From the moment I first met them 37 years ago I have been impressed with how kind, gracious and supportive they are. Eric's parents welcomed me fully and without qualification from the start back in the summer of 1976 and have always made me feel a very welcome part of the family.
Eric has a sister that just had her port removed after her successful bout with breast cancer. She is the only sibling that lives in Utah, but she was not eligible to be a donor. The remaining six, despite their busy lives and multiple responsibilities and obligations, volunteered to be tested and to be donors if they matched. They knew it would not be easy because it would require travel, time and expense, but they all hoped that they would be the match.
As it turns out, it is probably a good thing that only one, Eric's sister Debbie who live in California, was a bone marrow match. All wanted to help but we only needed one match. Eric would have been overwhelmed in choosing between good samaritans. We are so grateful to Debbie for her persistence in getting her cheek swab to LDS hospital to be tested. Several things went wrong, but she kept at it and pushed this forward.
For the past few months I have been in the very unusual position of being able to walk as fast as Eric, and now I can walk faster than him! I have spent the past 37 years trying to catch up with him. I have one worry about Debbie being the match. She has so much energy and fire that once her stem cells take hold and start to multiply in Eric's bone marrow cavities, I will once again be the tag along. I will not have a chance with the two of them combined!
I am looking forward to be left in their collective dust! Thank you Debbie. Thank you Grandpa and Grandma Olson for rearing such a faithful, generous and kind family. Thank you to (siblings) John, Susan, Beth, Debbie, Mary Ann, Bruce and Shauna for all your love and support through the years and especially at this time. I love you!
From Eric: It may sound a bit trite but, in this business of love, support, service and healing, aren't we all matches in a way? Debbie will provide the physical assistance but I do not doubt from the events of the last 60 days that any number of you would do the same if you could. She stands proxy for such a depth of love and kindness. There is great strength in knowing that we all do "match."
Monday, July 22, 2013
I wish I could think of something profound to say
Eric and I are feeling so very, very blessed today. It started out as a good day after Eric had a reasonable night of sleep. He was feeling stronger so we walked a little farther than we have walked for the past few days. I noticed as we walked that his movements were smoother and more coordinated than they had been for a couple of weeks.
Our first obligation was chemo at 11:50 a.m. As we were driving to the clinic for the chemo, my cell phone rang and Eric's sister Debbie (last on the list of potentials) told Eric that she was a match. Eric started crying. I was driving, so I tried very hard not to let more than a few tears well up in my eyes. But my heart was bursting with love and gratitude to my loving Heavenly Father for this tremendous answer to our prayers.
We hardly dared believe this good news, but we told our doctor when he came to see how the chemo was going that Eric's sister had called to say she was a match, but that we didn't know if more testing needed to be done to confirm it. He promised to find out all the details he could and share them with us when we go for chemo tomorrow.
Back from the downtown visit and all our running around (now late afternoon), I just got off the phone with our bone marrow transplant coordinator and she confirmed that Debbie is a full match! We are so excited. Debbie is so eager to donate that the coordinator had to calm her down, but we are so grateful that Debbie is more than willing to turn her life upside down to be available as soon as possible.
We don't know how long this preparation process will be, but assume it will take a week or two minimum to line everything up. But we are on the path! And in the meantime we feel so blessed that Eric is managing the pain, the sleep deprivation, and the messed up digestive tract better these past few days.
Among the many things we are grateful for is the love and support we have had from so many people. Eric's law firm has been amazing. Everyone has been so helpful and kind in walking us through this process of taking medical leave, winding down his practice, figuring out the new normal.
We have also been very blessed with loving and supportive family and friends. As a practical, literal person I have always had a bit of a problem with St. Matthew 6:25-34. How can you not think about food and clothes and all the other necessities of life? As a wife of one and mother of six, I have spent a lot of time thinking (and worrying) about those very things. This morning as Eric and I were walking I told him that it had suddenly hit me in the night that for a couple of weeks I had not thought about what to make for dinner. Every night we had been provided for by thoughtful friends. To my knowledge it had not been coordinated by anyone, but every evening the very thing that tasted good to Eric was here in our home. How could this be? This morning I realized that Heavenly Father had been kindly working through our loved ones to provide us what we needed. He had fulfilled His promise.
And then just a few hours later we received the phone call from Debbie, followed by the phone call from our coordinator. Heavenly Father has answered our prayers.
From Eric: I appreciate so much your thoughts and prayers. I feel them most in the dark stillness of the night as I move from room to room to settle in for another bit of sleep. It seems then that we are more a part of each other than we could ever suppose. With love.
Our first obligation was chemo at 11:50 a.m. As we were driving to the clinic for the chemo, my cell phone rang and Eric's sister Debbie (last on the list of potentials) told Eric that she was a match. Eric started crying. I was driving, so I tried very hard not to let more than a few tears well up in my eyes. But my heart was bursting with love and gratitude to my loving Heavenly Father for this tremendous answer to our prayers.
We hardly dared believe this good news, but we told our doctor when he came to see how the chemo was going that Eric's sister had called to say she was a match, but that we didn't know if more testing needed to be done to confirm it. He promised to find out all the details he could and share them with us when we go for chemo tomorrow.
Back from the downtown visit and all our running around (now late afternoon), I just got off the phone with our bone marrow transplant coordinator and she confirmed that Debbie is a full match! We are so excited. Debbie is so eager to donate that the coordinator had to calm her down, but we are so grateful that Debbie is more than willing to turn her life upside down to be available as soon as possible.
We don't know how long this preparation process will be, but assume it will take a week or two minimum to line everything up. But we are on the path! And in the meantime we feel so blessed that Eric is managing the pain, the sleep deprivation, and the messed up digestive tract better these past few days.
Among the many things we are grateful for is the love and support we have had from so many people. Eric's law firm has been amazing. Everyone has been so helpful and kind in walking us through this process of taking medical leave, winding down his practice, figuring out the new normal.
We have also been very blessed with loving and supportive family and friends. As a practical, literal person I have always had a bit of a problem with St. Matthew 6:25-34. How can you not think about food and clothes and all the other necessities of life? As a wife of one and mother of six, I have spent a lot of time thinking (and worrying) about those very things. This morning as Eric and I were walking I told him that it had suddenly hit me in the night that for a couple of weeks I had not thought about what to make for dinner. Every night we had been provided for by thoughtful friends. To my knowledge it had not been coordinated by anyone, but every evening the very thing that tasted good to Eric was here in our home. How could this be? This morning I realized that Heavenly Father had been kindly working through our loved ones to provide us what we needed. He had fulfilled His promise.
And then just a few hours later we received the phone call from Debbie, followed by the phone call from our coordinator. Heavenly Father has answered our prayers.
From Eric: I appreciate so much your thoughts and prayers. I feel them most in the dark stillness of the night as I move from room to room to settle in for another bit of sleep. It seems then that we are more a part of each other than we could ever suppose. With love.
Friday, July 19, 2013
Good thing I filled the car up with gas this morning
Where did I leave off? Oh yeah, I was inhaling salad while typing this blog while packing clothes for Eric in case they didn't release him from LDS hospital after he received the three units of blood. I timed myself at being home less than 30 minutes before heading back to the hospital.
Eric was having a great visit with his friend when I returned to LDS hospital. I was so grateful! Eric's color was a lot better after receiving the blood and his vital signs were all good so they let us leave at 9:30 p.m.
Today was supposed to be Eric's second day of chemo, but they told us not to come until they had analyzed his white blood cells from yesterday. After I called the doctor's office twice they realized the blood smear had been sent to the wrong lab and they wouldn't have the results until Monday. So at 2:30 they called us and asked us to report to the lab at LDS (weren't we there less than 24 hours ago?) and have new blood drawn. Then we were to go to the cancer clinic and wait for an hour for the lab results. At that point they would give Eric the chemo.
After hanging out for an hour at the clinic they received a preliminary report that Eric's platelets were low and he needed a platelet transfusion tomorrow, so we had to drive to Intermountain Medical Center to have blood drawn to type the platelet transfusion. They didn't have enough information yet to give us the chemo today.
While we were at IMC I received a phone call from the doctor and we found out that Eric's white blood cell count had gone down significantly from yesterday, which is good. He has a few more blast cells, which is something they are watching. But he is good to start his second round of chemo tomorrow. So it is two days late and many miles later, but we are good to go.
I am grateful we live close to excellent medical centers. We have met so many people who drive from all over Utah to visit the doctors and hospitals that are less than a half hour away from our house. We are so spoiled!
Eric was having a great visit with his friend when I returned to LDS hospital. I was so grateful! Eric's color was a lot better after receiving the blood and his vital signs were all good so they let us leave at 9:30 p.m.
Today was supposed to be Eric's second day of chemo, but they told us not to come until they had analyzed his white blood cells from yesterday. After I called the doctor's office twice they realized the blood smear had been sent to the wrong lab and they wouldn't have the results until Monday. So at 2:30 they called us and asked us to report to the lab at LDS (weren't we there less than 24 hours ago?) and have new blood drawn. Then we were to go to the cancer clinic and wait for an hour for the lab results. At that point they would give Eric the chemo.
After hanging out for an hour at the clinic they received a preliminary report that Eric's platelets were low and he needed a platelet transfusion tomorrow, so we had to drive to Intermountain Medical Center to have blood drawn to type the platelet transfusion. They didn't have enough information yet to give us the chemo today.
While we were at IMC I received a phone call from the doctor and we found out that Eric's white blood cell count had gone down significantly from yesterday, which is good. He has a few more blast cells, which is something they are watching. But he is good to start his second round of chemo tomorrow. So it is two days late and many miles later, but we are good to go.
I am grateful we live close to excellent medical centers. We have met so many people who drive from all over Utah to visit the doctors and hospitals that are less than a half hour away from our house. We are so spoiled!
Thursday, July 18, 2013
Cancer hijacked our day
Today did not go according to schedule, and as many of you know, I am one of the ten least spontaneous people on the planet. I love a good schedule and I hate adventures. Well, today has been an adventure.
Eric and I left the house today at 10:00 a.m. and headed to the cancer clinic where they drew his blood, gave him a brief checkup, and then put him in the chair for his scheduled chemotherapy on day one of his second round of less aggressive treatment. They never started the chemo, and people kept coming to ask us questions.
Eventually we found out that Eric's red blood cell count was very low, his platelet transfusion on Tuesday had actually made his platelet count worse (they explained why this happens on a fairly frequent basis), and his white blood cell count was soaring. They weren't sure what to do with Eric, and as the physician's assistant said, "We haven't ever seen this happen after just one round of low dose chemo." Once again, I knew Eric was an original, but does that have to extend into every aspect of our lives?
Our physician, the PA, and the bone marrow transplant team at LDS had a consultation and decided to not give the chemo, but instead admit Eric to LDS hospital where they could give him three units of blood right away. They are checking his white blood cells under a microscope to see if they can find out whether they are the "good" or the "bad" type of cells. Once they have agreed upon the type of cells they are, Eric will either start tomorrow on the less aggressive chemo at the clinic, or else he will have to stay in the hospital and start the more aggressive chemo even though he doesn't have a donor yet.
So after sitting at the clinic for two hours, we drove to LDS hospital. We had to wait for them to type Eric's blood so that they could make up three bags of blood for him. They started the first bag at 3:00 p.m. It takes two hours for each bag, so it will be a very long day for us before we finish up and can come home.
I finished the only book I had taken with me at 5:00 (silly me, I thought I would be back home by 1:30 or 2:00 when I packed my bag this morning to go to the clinic) and was ready to go insane. A friend of Eric's was coming to visit him between 6:00 and 7:00, so I took the chance and raced home to grab a few essentials to take back to the hospital.
The first thing I grabbed was a container in the fridge labelled "Super Foods Salad" that a friend had brought by last night. I inhaled the entire salad even thought I am sure it was supposed to be enough for both of us. I don't think you can overdose on salad, and it was awesome! Next I grabbed a sweater because I freeze in hospitals. And then I grabbed TWO books so that I don't run out of reading material again. (I also picked up a few things for Eric, so don't worry that I am neglecting him.)
I took the time to type this just to get it all off my chest, and now I am heading back to the hospital. Even though it has been a long day and we are not sure what tomorrow will bring, it has been a good day. After just half of the first bag of blood Eric started looking better. His color is better and he is more lively. He really needed this blood so it was worth checking him into the hospital so he could get it today instead of having to wait until tomorrow. And because he was feeling better he ate a lot of his meal at the hospital. I was really surprised at how much he ate. Maybe he was just craving hospital food!
Eric and I left the house today at 10:00 a.m. and headed to the cancer clinic where they drew his blood, gave him a brief checkup, and then put him in the chair for his scheduled chemotherapy on day one of his second round of less aggressive treatment. They never started the chemo, and people kept coming to ask us questions.
Eventually we found out that Eric's red blood cell count was very low, his platelet transfusion on Tuesday had actually made his platelet count worse (they explained why this happens on a fairly frequent basis), and his white blood cell count was soaring. They weren't sure what to do with Eric, and as the physician's assistant said, "We haven't ever seen this happen after just one round of low dose chemo." Once again, I knew Eric was an original, but does that have to extend into every aspect of our lives?
Our physician, the PA, and the bone marrow transplant team at LDS had a consultation and decided to not give the chemo, but instead admit Eric to LDS hospital where they could give him three units of blood right away. They are checking his white blood cells under a microscope to see if they can find out whether they are the "good" or the "bad" type of cells. Once they have agreed upon the type of cells they are, Eric will either start tomorrow on the less aggressive chemo at the clinic, or else he will have to stay in the hospital and start the more aggressive chemo even though he doesn't have a donor yet.
So after sitting at the clinic for two hours, we drove to LDS hospital. We had to wait for them to type Eric's blood so that they could make up three bags of blood for him. They started the first bag at 3:00 p.m. It takes two hours for each bag, so it will be a very long day for us before we finish up and can come home.
I finished the only book I had taken with me at 5:00 (silly me, I thought I would be back home by 1:30 or 2:00 when I packed my bag this morning to go to the clinic) and was ready to go insane. A friend of Eric's was coming to visit him between 6:00 and 7:00, so I took the chance and raced home to grab a few essentials to take back to the hospital.
The first thing I grabbed was a container in the fridge labelled "Super Foods Salad" that a friend had brought by last night. I inhaled the entire salad even thought I am sure it was supposed to be enough for both of us. I don't think you can overdose on salad, and it was awesome! Next I grabbed a sweater because I freeze in hospitals. And then I grabbed TWO books so that I don't run out of reading material again. (I also picked up a few things for Eric, so don't worry that I am neglecting him.)
I took the time to type this just to get it all off my chest, and now I am heading back to the hospital. Even though it has been a long day and we are not sure what tomorrow will bring, it has been a good day. After just half of the first bag of blood Eric started looking better. His color is better and he is more lively. He really needed this blood so it was worth checking him into the hospital so he could get it today instead of having to wait until tomorrow. And because he was feeling better he ate a lot of his meal at the hospital. I was really surprised at how much he ate. Maybe he was just craving hospital food!
Tuesday, July 16, 2013
Life is good
Not really anything to report today, but I just wanted to let you know that life is good. Eric had a nice nap while getting his platelet infusion. People dropped by or called to say hi. It rained. Eric ate well today. We feel at peace. I hope each of you had a good day also.
Monday, July 15, 2013
Pretty much no news that is worth hearing today
Eric had his blood drawn and tested today, and then a short visit with the doctor. He needs a platelet transfusion, so that is scheduled for tomorrow. On Thursday he has another visit with the doctor and starts his seven day series of low dose chemotherapy.
We have settled into a routine that is ruled by Eric's medications, pain, fatigue and sleep deprivation. Saturday morning was our last walk as Eric has become progressively weaker and unsteady. I am doing better at forcing food on Eric every couple of hours. I hadn't realized that was part of my caretaker job until he lost 10 pounds in one week. At today's appointment his weight hadn't dropped, which made me feel better. Hopefully he won't fire me if I keep him at a steady weight.
Last week we found out that 5 of Eric's 6 siblings eligible to donate bone marrow were not compatible with Eric. I always knew he was unique, but am a little discouraged by this news. His last eligible sibling's results will be a little slow coming in because she lives out of state and wasn't able to be tested at LDS hospital by the bone marrow transplant team we are seeing. The others were all tested at LDS because they were in state for a family reunion.
I talked to the bone marrow transplant team coordinator today. She has started making requests for matches from the national bone marrow registry, but it is a slow process when you have to use them. She cautioned me that it could easily take 6 to 8 weeks to find a match that will become the donor. I am a bit discouraged by this news because it is so hard to see Eric become weaker and more disoriented by the above mentioned medications, pain, fatigue and sleep deprivation.
Our goal is to just take each day at a time and not worry about things that are out of our control. We appreciate your faith and prayers on our behalf. It helps us keep going.
We have settled into a routine that is ruled by Eric's medications, pain, fatigue and sleep deprivation. Saturday morning was our last walk as Eric has become progressively weaker and unsteady. I am doing better at forcing food on Eric every couple of hours. I hadn't realized that was part of my caretaker job until he lost 10 pounds in one week. At today's appointment his weight hadn't dropped, which made me feel better. Hopefully he won't fire me if I keep him at a steady weight.
Last week we found out that 5 of Eric's 6 siblings eligible to donate bone marrow were not compatible with Eric. I always knew he was unique, but am a little discouraged by this news. His last eligible sibling's results will be a little slow coming in because she lives out of state and wasn't able to be tested at LDS hospital by the bone marrow transplant team we are seeing. The others were all tested at LDS because they were in state for a family reunion.
I talked to the bone marrow transplant team coordinator today. She has started making requests for matches from the national bone marrow registry, but it is a slow process when you have to use them. She cautioned me that it could easily take 6 to 8 weeks to find a match that will become the donor. I am a bit discouraged by this news because it is so hard to see Eric become weaker and more disoriented by the above mentioned medications, pain, fatigue and sleep deprivation.
Our goal is to just take each day at a time and not worry about things that are out of our control. We appreciate your faith and prayers on our behalf. It helps us keep going.
Thursday, July 11, 2013
Just good news today folks!
Eric's red blood cells, platelets and white blood cells are holding steady. The white cells that had the doctor concerned on Tuesday, turned out to be good white cells (instead of bad white cells that could indicate leukemia developing). The doctor thinks that Eric's low dose chemo not only is keeping his cancer from progressing, but has even helped his bone marrow to develop a few good blood cells.
The new pain killer prescription has helped, and we will tweak the dosage tomorrow morning, which should help even more. Eric's digestive tract, with a lot of help from some over the counter remedies that various medical friends recommended, has settled into a decent schedule. We now have a prescription that the doctor describes as Drano, but hope we never have to use it since he said it has surprising effects for up to 12 hours.
We hope to hear soon that one of Eric's brothers (or even both!) are matches to donate stem cells for the bone marrow transplant.
Eric will have more blood drawn on Monday, and then starts another seven day round of low dose chemo on Thursday. Hopefully this is the last round until we start the big stuff in the hospital in preparation for the bone marrow transplant.
Thank you for your prayers and support! It means a lot to us. We love you!
From Eric: The doctor said that the powerful pain in the bones is normal pain for a situation when the amount of bone marrow in there is twice what the bones were designed to hold: "normal pain" is hard for me to get my mind around. The combined kindness and prayers of all of you serve as a sustaining spirit and are very easy to get my mind around.
The new pain killer prescription has helped, and we will tweak the dosage tomorrow morning, which should help even more. Eric's digestive tract, with a lot of help from some over the counter remedies that various medical friends recommended, has settled into a decent schedule. We now have a prescription that the doctor describes as Drano, but hope we never have to use it since he said it has surprising effects for up to 12 hours.
We hope to hear soon that one of Eric's brothers (or even both!) are matches to donate stem cells for the bone marrow transplant.
Eric will have more blood drawn on Monday, and then starts another seven day round of low dose chemo on Thursday. Hopefully this is the last round until we start the big stuff in the hospital in preparation for the bone marrow transplant.
Thank you for your prayers and support! It means a lot to us. We love you!
From Eric: The doctor said that the powerful pain in the bones is normal pain for a situation when the amount of bone marrow in there is twice what the bones were designed to hold: "normal pain" is hard for me to get my mind around. The combined kindness and prayers of all of you serve as a sustaining spirit and are very easy to get my mind around.
Tuesday, July 9, 2013
Today's format is going to be Good News/Bad News
Good News: If you are trying to lose weight, cancer seems to be a sure thing. Eric has lost 7 pounds since last Friday's appointment.
Bad News: Eric doesn't really need to be losing any weight, and the more weight Eric loses the more I gain through emotional eating.
Good News: Eric's red blood cells and platelets are staying up, which means he doesn't need a transfusion in the near future.
Bad News: Eric's white blood cells are rising, which could mean his cancer is morphing into leukemia. The doctor will let us know within 24 hours if there is anything to be concerned about.
Bad News: We have to go in to the doctor on Thursday instead of waiting until Friday because they want to keep a close look on the white blood cell levels.
Good News: We love our doctor and his staff, and are so grateful they are so diligent.
Bad News: Eric has been in considerable more pain this past week and has had some of the digestive tract problems associated with pain killer use.
Good News: We have some great new prescriptions that we hope will take care of everything. Eric is looking forward to getting some real sleep.
Bad News: We heard today that the first two of Eric's siblings to have their blood work screened don't match as potential donors.
Good News: There are 4000 people on the national bone marrow registry who do match.
Bad News: It has been a rough last few days.
Good News: We have been smothered with love and support from friends and family. Eric has received two exceptionally beautiful and comforting blessings. No matter the number of bad news items, we are always aware that there are even more items of good news. Thank heavens for a loving Heavenly Father!
Bad News: Eric doesn't really need to be losing any weight, and the more weight Eric loses the more I gain through emotional eating.
Good News: Eric's red blood cells and platelets are staying up, which means he doesn't need a transfusion in the near future.
Bad News: Eric's white blood cells are rising, which could mean his cancer is morphing into leukemia. The doctor will let us know within 24 hours if there is anything to be concerned about.
Bad News: We have to go in to the doctor on Thursday instead of waiting until Friday because they want to keep a close look on the white blood cell levels.
Good News: We love our doctor and his staff, and are so grateful they are so diligent.
Bad News: Eric has been in considerable more pain this past week and has had some of the digestive tract problems associated with pain killer use.
Good News: We have some great new prescriptions that we hope will take care of everything. Eric is looking forward to getting some real sleep.
Bad News: We heard today that the first two of Eric's siblings to have their blood work screened don't match as potential donors.
Good News: There are 4000 people on the national bone marrow registry who do match.
Bad News: It has been a rough last few days.
Good News: We have been smothered with love and support from friends and family. Eric has received two exceptionally beautiful and comforting blessings. No matter the number of bad news items, we are always aware that there are even more items of good news. Thank heavens for a loving Heavenly Father!
Saturday, July 6, 2013
It's always nice to have a miracle
Eric has not felt well the last few days. He has a lot more pain in his bones, and now his muscles are also hurting. It hurts to move and it hurts to stay still. Eric is also losing strength and balance. How fun. Evidently this is normal for cancer patients. Despite the pain, we continue to walk as much as we can each morning, just at a slower pace.
Eric continues to stay as engaged with life as possible. He has been listening to a Great Lectures series done by a University of Virgina professor on the Civil War. Eric also watched the movie Gettysburg and has been researching Civil War atlases and rereading books on the subject. Have any questions on the Civil War? Eric would be glad to visit with you.
Friday morning at the doctor's office Eric's temperature was 99 degrees. Fevers are very bad news at the moment because Eric's immune system is so compromised. When I took his temperature at 2:30 his temperature had risen to 101.2. I called the doctor's office and left a message with the nurse. It was a tense half hour until they got back to us and told me to give Eric the antibiotic they had prescribed a couple of weeks ago in case this very thing happened. (The antibiotic must be fairly strong because it said on the information sheet that it is also used for anthrax and the plague.) I was to keep monitoring Eric's temperature and if he showed any sign of illness I was to take him to the emergency room, or if the fever hadn't broken by this afternoon it was a trip to the emergency room.
A friend came over yesterday evening about 8:00. He and our son Stephen gave Eric a blessing and then Eric had a nice visit with him. When I took Eric's temperature at 9:00, his temperature had dropped to 98 degrees. What a blessing! Eric's temperature has continued to stay in the normal range so far today. So hopefully we will have a quiet day at home without any medical issues or trips to the emergency room.
Eric continues to stay as engaged with life as possible. He has been listening to a Great Lectures series done by a University of Virgina professor on the Civil War. Eric also watched the movie Gettysburg and has been researching Civil War atlases and rereading books on the subject. Have any questions on the Civil War? Eric would be glad to visit with you.
Friday morning at the doctor's office Eric's temperature was 99 degrees. Fevers are very bad news at the moment because Eric's immune system is so compromised. When I took his temperature at 2:30 his temperature had risen to 101.2. I called the doctor's office and left a message with the nurse. It was a tense half hour until they got back to us and told me to give Eric the antibiotic they had prescribed a couple of weeks ago in case this very thing happened. (The antibiotic must be fairly strong because it said on the information sheet that it is also used for anthrax and the plague.) I was to keep monitoring Eric's temperature and if he showed any sign of illness I was to take him to the emergency room, or if the fever hadn't broken by this afternoon it was a trip to the emergency room.
A friend came over yesterday evening about 8:00. He and our son Stephen gave Eric a blessing and then Eric had a nice visit with him. When I took Eric's temperature at 9:00, his temperature had dropped to 98 degrees. What a blessing! Eric's temperature has continued to stay in the normal range so far today. So hopefully we will have a quiet day at home without any medical issues or trips to the emergency room.
Wednesday, July 3, 2013
Today is done, on to tomorrow
Eric was a hero today. He absorbed (definitely not the technical term) two units of whole blood and one unit of platelets in just under 4 hours. Infusions of this sort can easily take 5 to 6 hours, so you can see how impressive Eric was. He may be severely anemic, but he can still beat the clock when it matters.
Eric is tired after spending time at work and then at the hospital, but he should sleep better tonight after having the transfusion. The doctor also gave him a prescription for new medications that should help with the pain and achiness. (Achiness really is a word, I just looked it up. So if this posts with a red line under it, trust me and my dictionary, not blogger.)
Two of Eric's sisters were tested today to see if they are donor matches, which we really appreciate! It takes two weeks for results, and Eric was only tested last Friday, so we don't really expect anything until July 15 at the soonest. We would love to hear something positive sooner, but we don't want to get our hopes up or that weekend will seem really long.
In the excitement of getting to spend today in a chilly hospital unit instead of in a warm house, I forgot to mention in my last post that we finally received the results from the genetic work up of Eric's blood. The report placed him squarely in the high risk category instead of bumping him up to the very high risk category. The new information doesn't change anything as far as treatment, but we take our victories where we can get them.
We love you all and continue to feel so blessed by your faith and prayers. As weird as it may sound, Eric and I are enjoying our time together. We have had some great discussions and are finding peace and power in the most amazing places. What an amazing world we live in.
Eric is tired after spending time at work and then at the hospital, but he should sleep better tonight after having the transfusion. The doctor also gave him a prescription for new medications that should help with the pain and achiness. (Achiness really is a word, I just looked it up. So if this posts with a red line under it, trust me and my dictionary, not blogger.)
Two of Eric's sisters were tested today to see if they are donor matches, which we really appreciate! It takes two weeks for results, and Eric was only tested last Friday, so we don't really expect anything until July 15 at the soonest. We would love to hear something positive sooner, but we don't want to get our hopes up or that weekend will seem really long.
In the excitement of getting to spend today in a chilly hospital unit instead of in a warm house, I forgot to mention in my last post that we finally received the results from the genetic work up of Eric's blood. The report placed him squarely in the high risk category instead of bumping him up to the very high risk category. The new information doesn't change anything as far as treatment, but we take our victories where we can get them.
We love you all and continue to feel so blessed by your faith and prayers. As weird as it may sound, Eric and I are enjoying our time together. We have had some great discussions and are finding peace and power in the most amazing places. What an amazing world we live in.
Tuesday, July 2, 2013
Nothing exciting to report
We had a fairly boring doctor's appointment today. They drew blood, as usual, and discovered that Eric's numbers were low, as usual. The most exciting news was finding out Eric needed both a whole blood transfusion AND a platelet infusion. I would complain about spending 4+ hours at the hospital tomorrow getting the infusions, but they keep the infusion clinic nice and chilly. I will actually take a sweater with me to keep me warm enough. While the rest of you curse the heat wave, I will be sipping diet Dr. Pepper and reading a book. Eric will also be sipping a diet Dr. Pepper and reading a book, but who cares about him? Ha, ha, just kidding. We have discovered multiple times in the past month that cancer is a jealous mistress. Forget about trying to maintain a schedule or plan the future. A simple blood draw turns everything on its head and whatever the cancer demands, the cancer gets.
We are looking forward to the 4th of July because we are so grateful to live in this amazing country. We are thankful for all who have sacrificed in the past, and to those who sacrifice today to make this a land of hope and promise.
From Eric: Somehow I find a way through each day. What I would do without the assistance of MaryLynn is beyond my imagination. I find that both the good news and the less promising news confirms to my heart that we are in the kind and gracious hand of divine providence -- and God will not let go, whether in this life or the next. Love to all. ECO
We are looking forward to the 4th of July because we are so grateful to live in this amazing country. We are thankful for all who have sacrificed in the past, and to those who sacrifice today to make this a land of hope and promise.
From Eric: Somehow I find a way through each day. What I would do without the assistance of MaryLynn is beyond my imagination. I find that both the good news and the less promising news confirms to my heart that we are in the kind and gracious hand of divine providence -- and God will not let go, whether in this life or the next. Love to all. ECO
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