This has been a whirlwind of a week. It seemed like a lot to take in during the week. Bob and I have both had a million ideas and speculations and theorizations coursing through our brains and then between us.
The decision that we made, thanks to your prayers, was not to have the stem cell transplant, even though Bob is 65. For us and for right now in our life we believe that to be the best decision. Bob is already forty eight hours into the protocol of the new drug along with the dex.(Now 36hrs) Seems like once a decision is made things move very quickly.
Dr. Bahlis has sorta, kinda said if Bob is in good health he would still do the transplant to say 67. The Dr.'s plan is to wait until this drug fails. Perhaps it won't!!!!! We asked if there were new drugs coming and we were told yes in the next couple of years at least two more will come on test.
Oh Bob didn't have a spinal tap. Wrong terms, he had a bone marrow aspiration and just from a watching perspective it hurts!!!!! All the tests that were carried out this week, we will get the bottom line on them, on May 7---next visit to the oncologist. That will be three weeks in to this protocol.
So far the reaction to the drug hasn't been as horrible as we thought it might be. I truly believe that our merciful God has heard the many prayers that have been said on Bob's behalf. Thank you. Bob gets a really bad headache within the first hour but he takes the chemo at supper time so we are at home. Dizziness and being unsteady on his feet also happens. Walking stick is handy. Bob gets really red---like a bad sun burn but that doesn't last the whole day. He went to work today and by mid afternoon was very tired. The tiredness has been ongoing, however this time it seems a bit more pronounced.-------So all in all not bad at this point.(Says me).
Spring is more or less here, warm one day snow the next. I can hardly wait to get my yard cleaned up and start seeing some green while we enjoy a cup of coffee outside.
It looks like Bob will be able to manage our trip. Altho he has a plugged ear, which has been plugged for several weeks and Bob can't seem to "fix" it. He sees our family doc tomorrow. Hopefully Dr. G. will be able to do something for the ear. We hope that the plugged ear won't bother Bob when we fly---as in pain!!! Oh yes, we are off to Niagra Falls to spend Easter with dad Hildebrand and Reta. We are looking forward to the trip and change of venue for a bit.
Gotta finish up with a story about my time at the hospital as a volunteer today. Ready???!!! Well, it was within a half hour of my shift ending and a sweet lady asked if she could go for a walk so I went to ask the nurse and of course she couldn't but would I mind taking Helen for a walk in a wheel chair? The nurse says "just a short walk, as I know you must be almost done". Turns out this dear woman hadn't been out of her room for a while so how could this just be a short walk so off we went. I warned Helen that I had recently received speeding tickets so she should hold on tight. I think that info was like a 747 went right on overhead, anyway away we went and enjoyed looking out windows, seeing the drugstore, cruising by the cafeteria, enjoying the new gift shop. Yes we really did see a lot of the hospital. As we head back to Helen's floor I begin to panic which ward did I take her from??? I knew the floor but yikes which ward? OK, got that one figured out but for the life of me I did not know where Helen's room was or even which wing it was in. All looked the same to Helen too and she didn't know where her room was....so I told her we were on an adventure. You have to realize this is the first time I have visited this dear lady. In the end we had to stop and ask a nurse (not at the main desk that would be well...very humbling) who checked Helen's bracelet and looked on the computer to find Helen's abode. Wrong wing but now at least we had a room number. Helen was smiling so it was a great walkabout for her...embarrassing for me, especially if there had been security sent out to find the volunteer who lost a patient---learn something everyday---keep notes !!!!!!
Enjoy your Easter celebrations of our Resurrected Lord.
Monday, April 14, 2014
Thursday, April 3, 2014
Deja vu
When Bob came home from the appointment with the oncologist yesterday (April 2) it was deja vu. I spent today, once again, dealing with the fears and the realities of the horrible cancer that Bob's body is dealing with. Once again we will both be heading to Tom Baker Cancer Center on Tuesday April 8. Bob has been going to all of his appointments on his own for quite some time as all the appointments seemed so routine.
The routine and mundane is changing and not the way we would like.
The results from the PET scan were shared with Bob yesterday. The course of chemo that Bob has been taking has failed. There are more tumors or lesions on his bones. Bob said he didn't ask where, as we kinda know where some tumors may be. The pain he is experiencing gives it away. We hoped it was arthritis or nerve pain from the surgery of almost six years ago. Six years since the initial diagnosis, more than three years more than the original time frame we were given. Thanks to new drugs and new pairings of drugs over the past five years there is more hope and longevity for multiple myeloma patients. The one option that was presented is using a new drug called Pomalidomide. The Dr. needs to contact the drug company to get Bob approved to take this drug. This drug is not able to be prescribed yet. A year ago the FDA granted accelerated approval for patients with multiple myeloma who have received two prior therapies including Revlamid and Velcade and whose disease progressed within sixty days of completing the last therapy. Bob was still to have another month of Velcade and Dex so the cancer is being refactory!!!!!!
The overgrowth of malignant cells in the bone marrow can weaken the bones especially in the back and ribs causing pain and fractures. The pain is increasing in Bob's back bringing back the horror of six years ago. Six years ago we cancelled our Easter trip, a family wedding trip and then I watched as Bob could not handle the pain any longer. Trusting we won't have to go through all of that again. The side effects are horrible but they are with each drug. Many of the side effects are the same as what he has experienced wiith the other drugs. The main ones are neutropenia, anemia and thrombocylopenia. I thought these words were very scarey and yeah I googled them. It will be a while until we will know if this drug is possible for Bob.
The second option is equally frightening. On Tuesday this is the option that the blood work and spinal tap are in prep for; the stem cell transplant. The nurse told me once the tests were done we would discuss this option. You may remember that Bob was rejected for a transplant when first diagnosed. This was due to the finding that Bob had a heart attack somewhere in all the pain. Sixty-five is close to the top age that the doctors like to do the transplant. The thinking is that if the transplant would work for Bob the new drug would still be an option further down the road.
It is now Saturday morning and another test has been added to the Tues. schedule. Dr. Bahlis wants the echo cardiogram done before the other tests. Sooooo at seven in the morning we will be at the new hospital in our neighborhood for the echo and then at eight across the city at the lab over at Tom Baker. Hmmmm I think that I will have to drive!!!!!!
In our newsletter from Sonshine Park Preschool I was the "meet our staff" person for April. I will quote part of my write up;
"Moving to Calgary proved to be positive for us in so many ways. We truly saw God go ahead of us and prepare the way for our life in the city. We can honestly say that God has given us contentment and peace in the midst of life's struggles......"
I innocently read this to Bob later in the day of April 2. This was after I had been so upset and just angry that this cancer was not weakening it's grip on my husband. I ranted that we are so ill prepared for retiring, how our income on the farm just let us down, how we haven't worked long enough at our present rates to be ok, that we have made poor decisions over the years, blah, blah, blah. Bob reminded me that we prayed all the time and made the best decisions given whatever our circumstances were at the time. Then Bob told me we are just like the Israelites. God cared for them and as we read about their complaining about the manna after the Red Sea parting as well as their other complaints during those forty years we shake our heads wondering why didn't they see God's care. Bob pointed out to me;
"Shirley, just like you wrote in the newsletter, we know God cared for us. We need to trust Him now and pray for God's best and believe that He wants the best for us."
So, the verse from the book of Job came to my mind. Job tells his wife "You are talking like a foolish woman. Shall we accept good from God, and not trouble?" Job 2:10.
We will gird ourselves for what is ahead and pray for God's best. Should we pass through your thoughts at any time please pray for us as we continue on this journey.
Being in the "hymn culture" as a new believer and for many years after many of the hymns go through my thoughts. I was a new believer and learned much by teaching Sunday School. I learned the songs along with the kids. The hymns and songs that I learned are very precious words deep in my brain. The one I have been thinking of lately is the one following and should you know the tune; sing with me, maybe even march about:
The routine and mundane is changing and not the way we would like.
The results from the PET scan were shared with Bob yesterday. The course of chemo that Bob has been taking has failed. There are more tumors or lesions on his bones. Bob said he didn't ask where, as we kinda know where some tumors may be. The pain he is experiencing gives it away. We hoped it was arthritis or nerve pain from the surgery of almost six years ago. Six years since the initial diagnosis, more than three years more than the original time frame we were given. Thanks to new drugs and new pairings of drugs over the past five years there is more hope and longevity for multiple myeloma patients. The one option that was presented is using a new drug called Pomalidomide. The Dr. needs to contact the drug company to get Bob approved to take this drug. This drug is not able to be prescribed yet. A year ago the FDA granted accelerated approval for patients with multiple myeloma who have received two prior therapies including Revlamid and Velcade and whose disease progressed within sixty days of completing the last therapy. Bob was still to have another month of Velcade and Dex so the cancer is being refactory!!!!!!
The overgrowth of malignant cells in the bone marrow can weaken the bones especially in the back and ribs causing pain and fractures. The pain is increasing in Bob's back bringing back the horror of six years ago. Six years ago we cancelled our Easter trip, a family wedding trip and then I watched as Bob could not handle the pain any longer. Trusting we won't have to go through all of that again. The side effects are horrible but they are with each drug. Many of the side effects are the same as what he has experienced wiith the other drugs. The main ones are neutropenia, anemia and thrombocylopenia. I thought these words were very scarey and yeah I googled them. It will be a while until we will know if this drug is possible for Bob.
The second option is equally frightening. On Tuesday this is the option that the blood work and spinal tap are in prep for; the stem cell transplant. The nurse told me once the tests were done we would discuss this option. You may remember that Bob was rejected for a transplant when first diagnosed. This was due to the finding that Bob had a heart attack somewhere in all the pain. Sixty-five is close to the top age that the doctors like to do the transplant. The thinking is that if the transplant would work for Bob the new drug would still be an option further down the road.
It is now Saturday morning and another test has been added to the Tues. schedule. Dr. Bahlis wants the echo cardiogram done before the other tests. Sooooo at seven in the morning we will be at the new hospital in our neighborhood for the echo and then at eight across the city at the lab over at Tom Baker. Hmmmm I think that I will have to drive!!!!!!
In our newsletter from Sonshine Park Preschool I was the "meet our staff" person for April. I will quote part of my write up;
"Moving to Calgary proved to be positive for us in so many ways. We truly saw God go ahead of us and prepare the way for our life in the city. We can honestly say that God has given us contentment and peace in the midst of life's struggles......"
I innocently read this to Bob later in the day of April 2. This was after I had been so upset and just angry that this cancer was not weakening it's grip on my husband. I ranted that we are so ill prepared for retiring, how our income on the farm just let us down, how we haven't worked long enough at our present rates to be ok, that we have made poor decisions over the years, blah, blah, blah. Bob reminded me that we prayed all the time and made the best decisions given whatever our circumstances were at the time. Then Bob told me we are just like the Israelites. God cared for them and as we read about their complaining about the manna after the Red Sea parting as well as their other complaints during those forty years we shake our heads wondering why didn't they see God's care. Bob pointed out to me;
"Shirley, just like you wrote in the newsletter, we know God cared for us. We need to trust Him now and pray for God's best and believe that He wants the best for us."
So, the verse from the book of Job came to my mind. Job tells his wife "You are talking like a foolish woman. Shall we accept good from God, and not trouble?" Job 2:10.
We will gird ourselves for what is ahead and pray for God's best. Should we pass through your thoughts at any time please pray for us as we continue on this journey.
Being in the "hymn culture" as a new believer and for many years after many of the hymns go through my thoughts. I was a new believer and learned much by teaching Sunday School. I learned the songs along with the kids. The hymns and songs that I learned are very precious words deep in my brain. The one I have been thinking of lately is the one following and should you know the tune; sing with me, maybe even march about:
My Lord knows the way through the wildernessAll I have to do is follow.My Lord knows the way through the wildernessAll I have to do is follow.Strength for today, is mine all the wayAnd all that I need for tomorrow.My Lord knows the way through the wildernessAll I have to do is follow.
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