Today we were back at the BMT clinic. We were to see a nurse who would asses Bob's progress. Dr. B is on holiday so we knew we would not be seeing him. However the pain in Bob's hip has gotten so bad that it takes a fair chunk of the day and a number of pills to become mobile. Our minds were made up...........today we would "demand" to know what the pain was from. Bob had a number of full body scans prior to the transplant so if there was something there on the hip it should have been seen. Well we upset the applecart. I think the nurses thought this visit would be
tickety-boo easy. After the nursing assessments the nurse said that we needed to change the pain meds. In order to get a prescription, of course, one needs a doctor. The doc who was in the clinic didn't see us--he was seeing his patients and perhaps they don't cross over. Anyway, after some time we got to see Dr. Bahlis' fellow. The nurse said that he was an excellent doctor. In my crazy mind I was thinking butler??, cleans up in the lab??? Turns out a fellow is a doctor who has done an internship and residency and is now working in a specialty. I am thinking research oncologist in multiple myeloma. (Ya think?)
This young man was excellent and decided on a course of pain control. In the course of the conversation he told us about all of the lesions Bob had all over his skeleton. The one on the left hip was much larger than where the pain was on the right. He also explained how the steroids can make the bone wall thinner. Bob and I must have been in la la land because we were not aware of the extent of the lesions. Each time Bob had a scan we were told there weren't any new lesions. So either Bob had all these lesions seven years ago or we were being spared worry or we missed the whole thing. Nothing more could have been done given all the circumstances around Bob's diagnosis. Bob has been taking steroids the whole seven years and we did not know that side affect. However in all reality what difference would it have made --knowing all of that????
Today though, that information hit very hard right in the gut. Our young Dr. caught on pretty quick that we did not know these things. I think the tears gave it away. So many things raced through our minds, it was just a horrible experience again. It is a long ride home and we decided to drown our sorrows in a fast food joint. Hamburger, fries and a fountain drink. Not super smart for Bob but we did it. YUMMY. As we talked we knew we had to readjust some of our gut reaction. Nothing has changed. We are still asking the Lord for a miracle of remission. Bob says he now realizes how critical it is to be careful walking etc. so as not hurry along a broken bone. He has been careful but now "gets it". Pray that there aren't any spontaneous breaks.
Should Bob only have the transplant to recover from he would be dancing. He is doing well. WBC-8.3,HGB-120, Platelets-- 142. A little more to go but looking good. No fevers, no bowel problems, no urinary problem, no mouth sores. Bob lost some weight, that was a concern to the nurse. However he has started to eat better.
We have readjusted our load and will do the best we can, moving to the summit.
My life verse is Phil 4:13 I can do all things through Christ who strengthens me.
How else could we manage????
Tuesday, September 22, 2015
Saturday, September 12, 2015
ON OUR WAY
We are now on the way up the mountain. We left the hospital on Friday(the 11th). For Bob he was very happy and very excited to be going home with the prospect of feeling better. I on the other hand, was intimidated by what may be ahead. However after only a day at home I can say thank you for the many prayers---God has this!!!!!!!!
On Wed (9) Bob was still spiking fevers and was very shaky. That day Bob had an MRI. Once the results were back from the MRI plus all the various blood and pee sample and tests the medical people could not find the cause of the fever. There didn't seem to be any infection plus the blood counts were on the way up. Dr. Nancy, the transplant doctor, decided the only thing left to do was to take out the CVC line. So on Wed evening she did just that. Bob said he felt a tremendous sense of relief with that gone. I shudder to think of all the meds and blood plus the blood cells and saline that went directly into his heart. That night Bob still had a fever but it was controllable. The doctor kept him in one more day and night and ta da no fever on Thurs night. Bob and I are of the opinion that his body did not like the line and that was the only way it could fight back. The docs ran tests on the line and there wasn't any bacteria or other yukkies in it. We are happy with our theory.
Bob is happy at home, working on the computer. His mind is more clear. I take his temp every four hours and no fevers. Should that happen we are back in hospital asap. He still has a bed in unit 57 until Mon. On Tues morning (15) we become the responsibility of The Bone Marrow Transplant Clinic and Dr. Bahlis. We will be going there for maybe 2 1/2 to 3 months depending on how well Bob does in recovery. Then he needs all his immunizations again---they may skip the kindergarten shot.
Last night, Bob's first night home, we celebrated with a fire alarm in our building. Never realized how disorientated you can become waking up to that noise. We made it down the stairs and out side before we realized Bob had no mask or cane!!! Adrenalin is an amazing rush. We also realized most everyone in our building wears jammies to bed and forgets their glasses!!!! My friend, a nurse, said that without the mask on Bob, it was not a time to visit!!!!! She was also the one to ask if the firemen were good looking---no glasses!!!!ha ha!!!! Not sure what the alarm was all about but we did smell and see smoke on our floor, but not acrid. Maybe one of those hooka pipes gone astray.
Anyhow, my fears are being assailed, with Bob at home, and we are on the way up the mountain to a healthy Bob.
Should we cross your minds please pray for Bob's recovery and remission.
On Wed (9) Bob was still spiking fevers and was very shaky. That day Bob had an MRI. Once the results were back from the MRI plus all the various blood and pee sample and tests the medical people could not find the cause of the fever. There didn't seem to be any infection plus the blood counts were on the way up. Dr. Nancy, the transplant doctor, decided the only thing left to do was to take out the CVC line. So on Wed evening she did just that. Bob said he felt a tremendous sense of relief with that gone. I shudder to think of all the meds and blood plus the blood cells and saline that went directly into his heart. That night Bob still had a fever but it was controllable. The doctor kept him in one more day and night and ta da no fever on Thurs night. Bob and I are of the opinion that his body did not like the line and that was the only way it could fight back. The docs ran tests on the line and there wasn't any bacteria or other yukkies in it. We are happy with our theory.
Bob is happy at home, working on the computer. His mind is more clear. I take his temp every four hours and no fevers. Should that happen we are back in hospital asap. He still has a bed in unit 57 until Mon. On Tues morning (15) we become the responsibility of The Bone Marrow Transplant Clinic and Dr. Bahlis. We will be going there for maybe 2 1/2 to 3 months depending on how well Bob does in recovery. Then he needs all his immunizations again---they may skip the kindergarten shot.
Last night, Bob's first night home, we celebrated with a fire alarm in our building. Never realized how disorientated you can become waking up to that noise. We made it down the stairs and out side before we realized Bob had no mask or cane!!! Adrenalin is an amazing rush. We also realized most everyone in our building wears jammies to bed and forgets their glasses!!!! My friend, a nurse, said that without the mask on Bob, it was not a time to visit!!!!! She was also the one to ask if the firemen were good looking---no glasses!!!!ha ha!!!! Not sure what the alarm was all about but we did smell and see smoke on our floor, but not acrid. Maybe one of those hooka pipes gone astray.
Anyhow, my fears are being assailed, with Bob at home, and we are on the way up the mountain to a healthy Bob.
Should we cross your minds please pray for Bob's recovery and remission.
Tuesday, September 8, 2015
BASE CAMP
A friend of ours sent Bob and I an encouraging note. In the note she used the simile that we had a tall mountain before us and that together we would be able to climb it, get to the summit and then be able to descend to "normal" life. The mountain, of course, is Bob's recovery from the stem cell transplant. The summit would be remission and the descent would be to a time of less drugs, less side affects, a time of less stress.
Thinking about this, I believe that we are still at base camp. I have read some about the groups who make the climb of Mount Everest. All the preparation is done at the base camp. The supplies are all brought in and stored for the trip up the mountain. Short climbs are made to help the climbers adapt to the changing, thinner atmosphere. After these climbs it is back to base to make changes, tweek the plans. All around the base camp are prayer flags. They remind me of the buntings many of us have up in our homes.
All around Bob and I, we can feel the prayers of so many. We have notes and phone calls from people who are upholding us to The Great Physician. We truly have peace that God knows the way up the mountain and when the course is set, Bob will be discharged from hospital and the climb will begin.
Bob keeps spiking a fever pretty much daily. As I write this, the staff cannot find a definitive reason for the fevers. Bob has had so many blood tests and cultures done that we will be listening to opera on the way up the mountain. He has had two blood transfusions to help give him energy and health to adapt to the new situations. Antibiotics are packed on in preparation for leaving camp. Some days Bob thinks it is getting close "we will leave soon". Then we have the experts come in and say more tweeking to do. As the platelets increase the fevers should diminish. The blood counts are all going in the right direction ---up. The blood sugar has been more in the normal range lately. That will be an answer to prayer when the blood sugar stays normal. Bob will need a touque, as his hair has fallen out. Maybe this time it will come back on top too!!! Maybe it will be dark and wavy, the way I can still see him in my mind. :-} ah when we were young. Bob may need a new parka as he often gets shivers and chills. He also gets some bad, hmmm we call them twitches, don't know what causes that either.
Waiting and preparing in base camp is getting a little tiring. We know that our guide, the Lord Jesus, wants both of us in the best possible condition. So we will wait amidst the prayers and trust that we will be ready to make the ascent.
Thinking about this, I believe that we are still at base camp. I have read some about the groups who make the climb of Mount Everest. All the preparation is done at the base camp. The supplies are all brought in and stored for the trip up the mountain. Short climbs are made to help the climbers adapt to the changing, thinner atmosphere. After these climbs it is back to base to make changes, tweek the plans. All around the base camp are prayer flags. They remind me of the buntings many of us have up in our homes.
All around Bob and I, we can feel the prayers of so many. We have notes and phone calls from people who are upholding us to The Great Physician. We truly have peace that God knows the way up the mountain and when the course is set, Bob will be discharged from hospital and the climb will begin.
Bob keeps spiking a fever pretty much daily. As I write this, the staff cannot find a definitive reason for the fevers. Bob has had so many blood tests and cultures done that we will be listening to opera on the way up the mountain. He has had two blood transfusions to help give him energy and health to adapt to the new situations. Antibiotics are packed on in preparation for leaving camp. Some days Bob thinks it is getting close "we will leave soon". Then we have the experts come in and say more tweeking to do. As the platelets increase the fevers should diminish. The blood counts are all going in the right direction ---up. The blood sugar has been more in the normal range lately. That will be an answer to prayer when the blood sugar stays normal. Bob will need a touque, as his hair has fallen out. Maybe this time it will come back on top too!!! Maybe it will be dark and wavy, the way I can still see him in my mind. :-} ah when we were young. Bob may need a new parka as he often gets shivers and chills. He also gets some bad, hmmm we call them twitches, don't know what causes that either.
Waiting and preparing in base camp is getting a little tiring. We know that our guide, the Lord Jesus, wants both of us in the best possible condition. So we will wait amidst the prayers and trust that we will be ready to make the ascent.
Thursday, September 3, 2015
SEPTEMBER AGAIN
Here we are at day 7 post transplant, that makes today Sept.3. Our grandkids in Calgary are back in school. I wore a sweater today and so it is Sept.
Bob is now in the hospital full time for the next while. His platelet count is a .1 this morning. That is it--now it should start to go up. Today Bob received the hormone that will stimulate the stem cells to reproduce and make all of the different blood cells. We were told days7-9 are the lowest and today, when I got to the hospital, was very different for Bob than yesterday was. Yesterday he wanted his model, we went for a longish walk and sat in a lounge area. He wanted his own pillow as he was: "tired of sleeping on first base". Bob also wanted his computer. I delivered it all and in all reality it didn't matter. He hurts in a lot of different places, so he has now been given morphine. He hasn't actually vomited but has a very queasy stomach. No sores in his mouth but has a sore throat----normal---that makes it hard to swallow. Bob was told that when it gets to bad the nurses will spray the throat with an anesthetic so he can swallow without it hurting. He has to be able to swallow meds before he comes home. I suppose without the anesthetic. As the next days unfold apparently he will eat even less. They do make a loaded milkshake that Bob says is very tasty. The platelets being gone, well,transplant patients bleed from a number of sites and Bob is too. Today we only took a very short walk and then back to bed. He is so very sleepy. Some folks say sleep cures most everything!!!! Bob is still taking insulin but I truly believe that the high blood sugar is from the mish mash of drugs.
Today is also the hardest day for me. Watching Bob fight so hard to beat this cancer, takes me back to the horrors of 7 years ago when he began this fight. Bob loves me and our family so much that he has endured so much. He is truly my hero. He is my inspiration to keep going and not give up.
God has walked and held our hands these long 7 years. It is so tiring, this journey is. Please pray very specifically that once all of this is over Bob will be in remission and stay in remission for 7 years or longer. Pray that Bob will not be diabetic, from drugs or otherwise, once we are back on steady ground. Pray that I will experience continuing grace and peace. Pray that we, as a couple, will not be overwhelmed.
Bob is now in the hospital full time for the next while. His platelet count is a .1 this morning. That is it--now it should start to go up. Today Bob received the hormone that will stimulate the stem cells to reproduce and make all of the different blood cells. We were told days7-9 are the lowest and today, when I got to the hospital, was very different for Bob than yesterday was. Yesterday he wanted his model, we went for a longish walk and sat in a lounge area. He wanted his own pillow as he was: "tired of sleeping on first base". Bob also wanted his computer. I delivered it all and in all reality it didn't matter. He hurts in a lot of different places, so he has now been given morphine. He hasn't actually vomited but has a very queasy stomach. No sores in his mouth but has a sore throat----normal---that makes it hard to swallow. Bob was told that when it gets to bad the nurses will spray the throat with an anesthetic so he can swallow without it hurting. He has to be able to swallow meds before he comes home. I suppose without the anesthetic. As the next days unfold apparently he will eat even less. They do make a loaded milkshake that Bob says is very tasty. The platelets being gone, well,transplant patients bleed from a number of sites and Bob is too. Today we only took a very short walk and then back to bed. He is so very sleepy. Some folks say sleep cures most everything!!!! Bob is still taking insulin but I truly believe that the high blood sugar is from the mish mash of drugs.
Today is also the hardest day for me. Watching Bob fight so hard to beat this cancer, takes me back to the horrors of 7 years ago when he began this fight. Bob loves me and our family so much that he has endured so much. He is truly my hero. He is my inspiration to keep going and not give up.
God has walked and held our hands these long 7 years. It is so tiring, this journey is. Please pray very specifically that once all of this is over Bob will be in remission and stay in remission for 7 years or longer. Pray that Bob will not be diabetic, from drugs or otherwise, once we are back on steady ground. Pray that I will experience continuing grace and peace. Pray that we, as a couple, will not be overwhelmed.
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