We had another boring appointment in Ann Arbor yesterday and yes boring is good and comfortable to me. My counts slid around a bit but nothing to worry about. I LOVE these appointments where everything is predictable and OK. I had enough of the other type this past summer!
Blood transfusions every 2 weeks or so to support my bone marrow, which we hope is being repaired by the donor stem cells can be done here in Holland so that is on my calendar for the rest of the week. More blood tests and what they call "type and screen" to determine what kind of blood to give me. My blood type will be changing to my donor's type over the course of the next few months so they need to check me each time to get the proper blood for me.
I have my 100 day bone marrow biopsy next Monday morning at UofM. That should tell us a lot about what is going on in my bone marrow. The nature of myelofibrosis is that it scars the marrow and leaves gaping holes in the marrow. My Dr. tells me with this disease it takes longer to repair (and hopefully heal) than with other diseases. I am fine with longer as long as we know engraftment and repair is taking place. So yes, Monday is a big day with a lung function test, echocardiogram, blood work and last but not least a bone marrow biopsy! We will get partial results the following Monday when we see Dr. Magineau.
So I wait....and wait. I try to stay busy and believe me I've got plenty to do. I am amazed at how content I am here at home. I thought it would be harder than it is. With all the flu and other viruses my family has me grounded to the house and I can't argue with the result, so far not even a sniffle! I do miss the hum of a busy life but the hope is that next year will be just that.
As many of you know officiating for Competitive Cheer is a big part of my life. Last Sat. was the Lake Michigan Competitive Cheer Official's Scholarship Invitational. Twelve $1000.00 scholarships were given out! In my absence so many people worked and did what I usually do and it was a tremendous success. My thanks especially to Tanya, Kristia, Heather, Lynette and Jane. I told my family it just shows that no one is indispensable which for a volunteer association is a very healthy thing. I am just so proud of them and happy for the recognition of the outstanding recipients of the the scholarships!
So let us pray that things stay as boring as they have been. I know my Savior has my future in his hands but if there is one thing I have learned this winter is that it's OK to go to him with specific requests, and that was a big lesson to learn.
Grace and Peace be with each of you,
Peggy
Tuesday, January 29, 2013
Tuesday, January 15, 2013
Home Sweet Home
Greetings to Family and Friends,
That's right! I am officially HOME! For the past 2 weeks we were unofficially here for part of the week but now I have my Dr.'s permission to return home and go to Ann Arbor every 2 weeks for check ups instead of every week. We gave up the keys to our apartment yesterday. It served it's purpose for the first month I was out of the hospital. We had many appointments and trips back to the Clinic but now I have stabilized and my visits, hopefully, will become less frequent. I can get my blood drawn here in Holland and have the results faxed to Dr. Magineau. Home is definitely where I want to be.
Yesterday I was infused with 2 units of blood and have had great energy today. I am drinking water constantly as I have been dehydrated. I pulled a "Hilary Clinton" last week. I got out of bed and started walking too fast. The next thing I knew I was on the ground wondering how I got there ! My light headness is a product of dehydration, low blood pressure (which I have always had) and a side effect of all the medication I am taking. Needless to say I am learning to go more slowly, which if you know me is not my normal speed.
My counts are all good, won't bother you with numbers. When I reach the 100 day mark they will start to taper the tacromilus that I am taking that suppresses any of my stem cells that remain. It is possible that I may experience "Graft vs. Host Disease" at that time. Which is not an all bad thing because some GVHD would show that I am engrafting the new cells nicely. We will just have to wait and see. As of right now I don't have any signs. My only symptom is the fatigue that goes with this process and even that is getting better. Once I had my daily IV infusion this morning I didn't lay down or rest the rest of the day. I am sure some fresh blood from yesterday made a difference too! Please consider donating blood to your local blood bank as they always are short this time of year yet the demand remains strong.
I am staying in all of the time. Very rarely do I venture out in public. I am doing my best to avoid the flu and all of the other nasty stuff making the rounds. Den did develop a head cold but wore a mask when he hooked me up to my IV, slept in another room and constantly was washing his hands. So far, so good for me.
So that is where we are at folks. There remains some pretty significant unknowns. I will have another bone marow biopsy at the 100 day mark and we should see some improvement in the condition of the bone marrow. It won't be like Robin Roberts where the disease is gone. Erasing myelofibrosis is a longer process. How long I don't know. I just hope and pray that my stem cells are giving up and that the new ones are the ones in charge. We should have an indication of that at the 100 day mark. If my donor's cells are the majority then we can be looking at a cure. Trust me, I know fully well that your prayers have helped me get to this point. I am so humbled by the people who have been praying for me and I thank you from the botttom of my heart. We're not done yet, there is a lot that lies ahead. A cure? Amazing! We shall see................
Grace and Peace,
Peggy
That's right! I am officially HOME! For the past 2 weeks we were unofficially here for part of the week but now I have my Dr.'s permission to return home and go to Ann Arbor every 2 weeks for check ups instead of every week. We gave up the keys to our apartment yesterday. It served it's purpose for the first month I was out of the hospital. We had many appointments and trips back to the Clinic but now I have stabilized and my visits, hopefully, will become less frequent. I can get my blood drawn here in Holland and have the results faxed to Dr. Magineau. Home is definitely where I want to be.
Yesterday I was infused with 2 units of blood and have had great energy today. I am drinking water constantly as I have been dehydrated. I pulled a "Hilary Clinton" last week. I got out of bed and started walking too fast. The next thing I knew I was on the ground wondering how I got there ! My light headness is a product of dehydration, low blood pressure (which I have always had) and a side effect of all the medication I am taking. Needless to say I am learning to go more slowly, which if you know me is not my normal speed.
My counts are all good, won't bother you with numbers. When I reach the 100 day mark they will start to taper the tacromilus that I am taking that suppresses any of my stem cells that remain. It is possible that I may experience "Graft vs. Host Disease" at that time. Which is not an all bad thing because some GVHD would show that I am engrafting the new cells nicely. We will just have to wait and see. As of right now I don't have any signs. My only symptom is the fatigue that goes with this process and even that is getting better. Once I had my daily IV infusion this morning I didn't lay down or rest the rest of the day. I am sure some fresh blood from yesterday made a difference too! Please consider donating blood to your local blood bank as they always are short this time of year yet the demand remains strong.
I am staying in all of the time. Very rarely do I venture out in public. I am doing my best to avoid the flu and all of the other nasty stuff making the rounds. Den did develop a head cold but wore a mask when he hooked me up to my IV, slept in another room and constantly was washing his hands. So far, so good for me.
So that is where we are at folks. There remains some pretty significant unknowns. I will have another bone marow biopsy at the 100 day mark and we should see some improvement in the condition of the bone marrow. It won't be like Robin Roberts where the disease is gone. Erasing myelofibrosis is a longer process. How long I don't know. I just hope and pray that my stem cells are giving up and that the new ones are the ones in charge. We should have an indication of that at the 100 day mark. If my donor's cells are the majority then we can be looking at a cure. Trust me, I know fully well that your prayers have helped me get to this point. I am so humbled by the people who have been praying for me and I thank you from the botttom of my heart. We're not done yet, there is a lot that lies ahead. A cure? Amazing! We shall see................
Grace and Peace,
Peggy
Friday, January 4, 2013
Better Each Day
Happy New Year!
Here is hoping your holidays were as you wanted them to be, whether quiet and intimate or wild and crazy with family and friends. Ours had a little bit of both which made them perfect.
I am amazed at how well I am doing now. I did have a few weeks of being pretty loopy as a result of medication. I know now that it was tough for the girls to see me like that. I don't remember much of what I said, I just remember being continually confused. I stopped taking one med and adjusted a few others. I think I am better and my family agrees. Physically I am doing great also. Yesterday I had a few hours where I felt "normal". No graft vs. host as of today. Also I am staying away from public places in hopes of staying healthy. Because we are home here in Holland so much I am content in my own home. Plenty to do and no bed is as comfortable as my own. Another good thing is my daily IV infusion (magnesium) is only 3 hours and not 5-6 hours. That makes a huge difference for me.
I will admit I am a bit disturbed over no gvhd as having some means the donor's cells are engrafting. I keep expressing my concern to Dr. Magineau, he said my counts would not be as good as they are if her cells were not engrafting. Also we will have a better idea of what is happening in my bone marrow when I have my 100 day bone marrow biopsy.I spend a few minutes a day worrying, then I talk to God and let it go. I know my Heavenly Father has his will for me and I must acquiesce to it. Although MY plan is to return to full health and to get my life back. My new mantra is, "I will be content, I will be content, I will be content.
One other area that everyone was concerned with was my weight. I am probably one of the few who lost weight over the holidays, in fact about 35lbs. Along with the confusion came a lack of appetite. I just was not interested in food. My appetite is slowly coming back so I have put back about 5lbs. I have lost all my muscle. I am really going to have work hard to get that back. Hopefully this summer will find me walking, don't know when the running will begin. First I need to be able to walk!
So there you go, a complete update on how I am doing. One other change- I can be left alone for 1-2 hrs. Before this I could not be left alone, so progress right?
If you want to know how to specifically pray, that my lack of gvhd does not mean lack of engraftment of donor cells, that I continue to be content, that Den and I remain healthy. I don't know how we would manage if he got sick, he does everything for me!
Again I want to express my appreciation to each of you, the fact that you take the time to pray for me and to read this blog.
Love to each of you......Grace and Peace, Peggy
Here is hoping your holidays were as you wanted them to be, whether quiet and intimate or wild and crazy with family and friends. Ours had a little bit of both which made them perfect.
I am amazed at how well I am doing now. I did have a few weeks of being pretty loopy as a result of medication. I know now that it was tough for the girls to see me like that. I don't remember much of what I said, I just remember being continually confused. I stopped taking one med and adjusted a few others. I think I am better and my family agrees. Physically I am doing great also. Yesterday I had a few hours where I felt "normal". No graft vs. host as of today. Also I am staying away from public places in hopes of staying healthy. Because we are home here in Holland so much I am content in my own home. Plenty to do and no bed is as comfortable as my own. Another good thing is my daily IV infusion (magnesium) is only 3 hours and not 5-6 hours. That makes a huge difference for me.
I will admit I am a bit disturbed over no gvhd as having some means the donor's cells are engrafting. I keep expressing my concern to Dr. Magineau, he said my counts would not be as good as they are if her cells were not engrafting. Also we will have a better idea of what is happening in my bone marrow when I have my 100 day bone marrow biopsy.I spend a few minutes a day worrying, then I talk to God and let it go. I know my Heavenly Father has his will for me and I must acquiesce to it. Although MY plan is to return to full health and to get my life back. My new mantra is, "I will be content, I will be content, I will be content
One other area that everyone was concerned with was my weight. I am probably one of the few who lost weight over the holidays, in fact about 35lbs. Along with the confusion came a lack of appetite. I just was not interested in food. My appetite is slowly coming back so I have put back about 5lbs. I have lost all my muscle. I am really going to have work hard to get that back. Hopefully this summer will find me walking, don't know when the running will begin. First I need to be able to walk!
So there you go, a complete update on how I am doing. One other change- I can be left alone for 1-2 hrs. Before this I could not be left alone, so progress right?
If you want to know how to specifically pray, that my lack of gvhd does not mean lack of engraftment of donor cells, that I continue to be content, that Den and I remain healthy. I don't know how we would manage if he got sick, he does everything for me!
Again I want to express my appreciation to each of you, the fact that you take the time to pray for me and to read this blog.
Love to each of you......Grace and Peace, Peggy
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