Greetings Friends and Family,
Well Den and I returned from our bi-weekly trip to U of M. Results of my blood work continue to be good. I needed a transfusion of blood which did not surprise me. I had been quite short of breath and VERY light headed when I stood up too quickly. The transfusion gives me instant results...we drove home from Ann Arbor, got home about 6:30 pm (our day started at 8:15am for lab work) and I went out and ran errands until about 7:30, loaded the car for our trip south and picked up around the house. I felt like the "old me" where I had tons of energy and could accomplish sooo much!
Having so many days when I don't "accomplish" much is one of the tougher parts of this for me. I am so used to pushing myself and getting things done, it has become a part of my identity. To be perfectly honest with you I have many days where I don't get much done because I need to rest so much. I am really working on patience. I know from talking to others and looking at videos on Be The Match that I am so far ahead of the game and I need to be content with where I am. Yet...I want that old energy back so I can do-do-do! Let's just say that my journey with patience is a work in progress.
I have been doing some reading. I snagged a book "Proof of Heaven" which was an interesting read. It was a neurosurgeon's account of what happened when he was basically brain dead as a result of bacterial meningitis and in a coma for several days. If you are looking for something to read I would suggest it. Now I am plowing through "Surviving One Bad Year"......seems appropriate doesn't it? Actually it covers many scenarios of what a bad year can be and is quite inspirational.
Slowly, ever so slowly I am returning to my normal life. I have even committed to an Official's Conference in July. I am also going back to my dentist/ortho to have my teeth straightened. I guess that means I have hope for the future. In August/Sept. I could have cared less, plus I was in so much pain I couldn't tolerate one more thing to make me any more uncomfortable. Tonight we went to a "Celebration of Learning" for Liam's second grade class. I realized quickly that it has been a very long time since I had been surrounded by so many people. It will be some time before I will be able to relax in a crowd.
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Tomorrow we leave for Florida. Sarah, Ella and Grey are riding with us. We are going to the Atlanta Aquarium on Friday, I think the kids will love it. The entire family minus Seth will be together next week (his Spring Break was 2 weeks ago). Should be good family time and we are all so ready for some sunshine. It has been a long winter for the entire family and I am so happy we get to go and enjoy some sun, warmth and family.....just what the doctor ordered.
My love to all of you. I remain encouraged and thankful for this time. I do appreciate every day even when I am resting and hopefully becoming stronger and healthy again. Again, the future is unknown for me but it is for you too, isn't it? All we really have is this moment, so enjoy your moments.
Grace and Peace, Peggy
Tuesday, March 26, 2013
Tuesday, March 12, 2013
Another Good Report
Greetings Family and Friends,
Den and I made our trip to Ann Arbor yesterday and received all good news. All of my counts have either improved or stabilized. No blood transfusion yesterday but maybe in 2 weeks when we go back. On our off week in Ann Arbor I get my blood work done right here in Holland. Even though nothing seems to be "off" they continue to monitor me closely.
Our visit was actually quite brief. Dr. Magineau continues to taper some of my meds. One less tacro every two weeks. I have gone from 12 tacro pills a day down to 3 total for the day! Also one less dosage of magnesium. You cannot believe what some of these prescriptions cost...let's just say we have already hit our deductible for 2013! Thank you Lord for good insurance, hopefully it will continue. I do have a considerable amount of pain in my shoulder area. I assumed it was from just normal activity and the fact I have lost most, if not all of my muscle. The Dr. explained that, perhaps, I have donor cells flocking to the site of inflammation that may exacerbate the problem, which makes sense as lifting my arms can be so painful. So for all of you who took ibuprofen and iced.....that was his prescription for me! It seems to be helping already.
As we left Ann Arbor yesterday my heart seemed so full of gratitude towards my donor and the gift of life that she so graciously and generously has given me. Please again, hear my plea if any of you have not joined the Registry, please do so immediately. Just contact Be the Match.org and they will send you a free kit to your home. If you get the call it will take some of your time and energy but my goodness you would get a once in a lifetime opportunity to save a life! I could never fully express my gratitude to my donor. I understand that this may be a remission of an indeterminate length or it could be the rest of my life, who knows? I am rejoicing in today, I love the normalcy that is coming back into my life and I will be forever grateful for this time.I have every intention to fully enjoy life. If any of you ever get the call to be a donor, please let me know. That alone would make everything worthwhile to me. I know this isn't all about me...in my quiet time that has been made clear to me. I am guessing we have added about 100 people to the Registry. Perhaps somewhere in that 100 is a remission/cure for someone else.
I am experiencing what I hope you have today, His Grace and Peace,
Peggy
Den and I made our trip to Ann Arbor yesterday and received all good news. All of my counts have either improved or stabilized. No blood transfusion yesterday but maybe in 2 weeks when we go back. On our off week in Ann Arbor I get my blood work done right here in Holland. Even though nothing seems to be "off" they continue to monitor me closely.
Our visit was actually quite brief. Dr. Magineau continues to taper some of my meds. One less tacro every two weeks. I have gone from 12 tacro pills a day down to 3 total for the day! Also one less dosage of magnesium. You cannot believe what some of these prescriptions cost...let's just say we have already hit our deductible for 2013! Thank you Lord for good insurance, hopefully it will continue. I do have a considerable amount of pain in my shoulder area. I assumed it was from just normal activity and the fact I have lost most, if not all of my muscle. The Dr. explained that, perhaps, I have donor cells flocking to the site of inflammation that may exacerbate the problem, which makes sense as lifting my arms can be so painful. So for all of you who took ibuprofen and iced.....that was his prescription for me! It seems to be helping already.
As we left Ann Arbor yesterday my heart seemed so full of gratitude towards my donor and the gift of life that she so graciously and generously has given me. Please again, hear my plea if any of you have not joined the Registry, please do so immediately. Just contact Be the Match.org and they will send you a free kit to your home. If you get the call it will take some of your time and energy but my goodness you would get a once in a lifetime opportunity to save a life! I could never fully express my gratitude to my donor. I understand that this may be a remission of an indeterminate length or it could be the rest of my life, who knows? I am rejoicing in today, I love the normalcy that is coming back into my life and I will be forever grateful for this time.I have every intention to fully enjoy life. If any of you ever get the call to be a donor, please let me know. That alone would make everything worthwhile to me. I know this isn't all about me...in my quiet time that has been made clear to me. I am guessing we have added about 100 people to the Registry. Perhaps somewhere in that 100 is a remission/cure for someone else.
I am experiencing what I hope you have today, His Grace and Peace,
Peggy
Friday, March 1, 2013
Good to feel more normal!
Dear Family and Friends,
Den and I went to Ann Arbor on Weds. First I had my weekly blood draw then my appointment with Dr. Magineau. Again, everything is looking good and NO MORE IV on a daily basis! I had gone from 6 hours a day down to 2 hours a day for magnesium sulfate. Evidently the tacro I take as an immunosupression erases the magnesium in my body and we can't live without it. Now I am strictly on oral mag and disconnected from the pole for the first time in 133 days! I could not be happier, another step towards freedom (along with driving and going to the grocery store by myself).
The Dr. is tapering my tacro. Evidently it is suppressing my donor cells. The theory is that now that my donor cells are dominant in my blood they will proliferate even more. So we are hoping and praying that is what happens. There is also a possibility that I could develop GVHD (graft vs. host disease) as the donor cells increase. We will deal with that when and if it happens.
This remission could last 6 mos., a year or 5years or 10 years or the rest of my life. Just as with so many things the future is unknown. My Feb. 16 devotional was speaking to me clearly, "Your future looks uncertain and feels flimsy--- even precarious. That is how it should be. Secret Things belong to the Lord, and future things are secret things. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My Presence." This is exactly where I am at....the next step and the one after that. I am fully enjoying the sense of health that I am experiencing. I have never been one to waste time, now more so than ever.
Your prayers have certainly buoyed my spirits at so many times over the past 4 months. For the first month when all I could do was sleep,when taking a shower was too much work, I leaned on all of you. I can never thank you enough. I still have a ways to go but am feeling stronger all the time and can do so much more for myself, for which I am very grateful.
Please enjoy your day - I certainly intend to!
Grace and Peace, Peggy
Den and I went to Ann Arbor on Weds. First I had my weekly blood draw then my appointment with Dr. Magineau. Again, everything is looking good and NO MORE IV on a daily basis! I had gone from 6 hours a day down to 2 hours a day for magnesium sulfate. Evidently the tacro I take as an immunosupression erases the magnesium in my body and we can't live without it. Now I am strictly on oral mag and disconnected from the pole for the first time in 133 days! I could not be happier, another step towards freedom (along with driving and going to the grocery store by myself).
The Dr. is tapering my tacro. Evidently it is suppressing my donor cells. The theory is that now that my donor cells are dominant in my blood they will proliferate even more. So we are hoping and praying that is what happens. There is also a possibility that I could develop GVHD (graft vs. host disease) as the donor cells increase. We will deal with that when and if it happens.
This remission could last 6 mos., a year or 5years or 10 years or the rest of my life. Just as with so many things the future is unknown. My Feb. 16 devotional was speaking to me clearly, "Your future looks uncertain and feels flimsy--- even precarious. That is how it should be. Secret Things belong to the Lord, and future things are secret things. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My Presence." This is exactly where I am at....the next step and the one after that. I am fully enjoying the sense of health that I am experiencing. I have never been one to waste time, now more so than ever.
Your prayers have certainly buoyed my spirits at so many times over the past 4 months. For the first month when all I could do was sleep,when taking a shower was too much work, I leaned on all of you. I can never thank you enough. I still have a ways to go but am feeling stronger all the time and can do so much more for myself, for which I am very grateful.
Please enjoy your day - I certainly intend to!
Grace and Peace, Peggy
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