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
Subscribe to:
Posts (Atom)