I received more results today from the Bone Marrow Biopsy. The ratio of my cells to the donor cells is called chimerism. I mentioned last time that I was not expecting 100% donor cells because of the strong immunosuppression drugs I have been on. In fact I was wondering if there would be some regression of the donor cells. There are two cell lines that they follow. The CD33 cell line was still 100% donor cells just like the previous biopsy. The other cell line is CD3. Last time it was still 23% me, this time it was only 13% me! So I'm or rather she(my donor) is gaining.
Several of you wanted me to let you know the results when I got them....so there you go.
I have had some really good days lately, more strength and more energy. That has been great and encouraging to me. My "shaking" is better with lower dosages of some of my meds. Also my appetite has been much better.
Thanks for caring, the battle is continuing and I am moving forward .
Grace and Peace to you. Peggy
Wednesday, November 13, 2013
Thursday, November 7, 2013
A Wonderful Gift!
Sorry it has taken me so long to update. My one year anniversary was coming up and I was getting more than a little anxious about my one year bone marrow biopsy, I thought the less I talked about it the less I would think about. Of course I expressed some of what I was feeling to Den, the girls and a few close friends. But other than that I didn't want to dwell on it. On the other hand I didn't want to lead people to believe that it would necessarily be good news. However, the results were very GOOD! The biopsy showed no signs of disease! So for right now I appear to be cancer free. I know very well this has come at a high cost in every sense of the word. For those of you who have prayed over me and for me, cards that were sent over the course of a year, words could never express the sense of appreciation I have felt for each one of you. So many of you have been wonderful friends to not just me but to Dennis and each of the girls. Thank you one more time!
The test that determines the ratio of my cells to the donor cells has not come back. They want me to call back in a week for the results of that. I am not expecting to be 100% donor because of the strong immunosuppression drugs I have been on since April to fight the GVHD of my liver and my skin. So we shall see.
So speaking of that I know many of you have noticed how "shaky" I have become. I also have issues with my sense of balance and a few more things that I knew were not good or normal. Dr. Magineau believes I have a toxicity in my central nervous system from one of the drugs I have been taking. It has relieved me that I'm not falling apart. So, obviously we need to get me off some of these drugs. However I have been making great progress and would hope and pray that the GVHD does not come back.
I am still itching but other than my arms it's definitely getting better. I saw the Dermatologist today and they are giving me a few more meds that should help. This pill taking is just so bizarre to me, I never used to take vitamins! Now 25 pills a day would not be unusual. I thank God every day for them and the awesome doctors who treat me as though I am important to them. It has been a strenuous journey but I have learned so much. That is for another post another time.
I have been blessed by so many, family, friends, medical staff, long time friends and many new ones.
I am working hard to get better and stronger with the help of my Heavenly Father.
My love to all. Grace and Peace,
Peggy
The test that determines the ratio of my cells to the donor cells has not come back. They want me to call back in a week for the results of that. I am not expecting to be 100% donor because of the strong immunosuppression drugs I have been on since April to fight the GVHD of my liver and my skin. So we shall see.
So speaking of that I know many of you have noticed how "shaky" I have become. I also have issues with my sense of balance and a few more things that I knew were not good or normal. Dr. Magineau believes I have a toxicity in my central nervous system from one of the drugs I have been taking. It has relieved me that I'm not falling apart. So, obviously we need to get me off some of these drugs. However I have been making great progress and would hope and pray that the GVHD does not come back.
I am still itching but other than my arms it's definitely getting better. I saw the Dermatologist today and they are giving me a few more meds that should help. This pill taking is just so bizarre to me, I never used to take vitamins! Now 25 pills a day would not be unusual. I thank God every day for them and the awesome doctors who treat me as though I am important to them. It has been a strenuous journey but I have learned so much. That is for another post another time.
I have been blessed by so many, family, friends, medical staff, long time friends and many new ones.
I am working hard to get better and stronger with the help of my Heavenly Father.
My love to all. Grace and Peace,
Peggy
Saturday, September 14, 2013
We Have Some Answers
Yes, we have some answers as to why I have this horrible itching. As you recall both the Drs. and myself attributed it to the high bilirubin. When that came down to normal and I was still itching, without any relief, we had to dig (literally) a little deeper. Dr. Kitco sent me to Dermatology at UofM. They proceeded to do a skin biopsy and it came back positive for GVHD of my skin. It doesn't present with a rash as most GVHD does, just the constant itching. I have a new cream to apply and a recommendation to some different light therapy. There is a Dr. in GR who does this light therapy. Dr. Seabus, (UofM Derm) wants me to have the light therapy 3X a week. We are waiting to hear from our Insurance if it will cover me in GR. If not I will have to go to AA for it. My ECP is down to 2X every other week in Ann Arbor so hopefully I can stay closer to home for this treatment. At this point I will do whatever it takes so I can be more comfortable!
We had a great Labor Day at the cottage, the entire family was there...all 19 of us! The kids had one last day with tubing, boating and swimming. Sunday afternoon brought some serious trail riding with a few people caught in a downpour. It was a lot of fun and a lot of hot showers! Monday, everyone pitched in to help close up the cottage. It's amazing how fast things get done with everyone working. They all left early Monday afternoon, Den and I stayed on for the finishing touches and then to Reeds and then back and forth for 3 days in AA! It was busy and I was so glad to get home Friday afternoon. It sure was an improvement from a year ago when I was in the hospital for 6 days with a blood clot in my leg and lungs so I am not complaining.
Everyone is busy now and into their school and sports schedule. Eli is on the Varsity Tennis Team, Annie is playing 8th grade volleyball and club soccer, Emma is dancing 2 nights a week. Ella is at gymnastics 3-4 times a week working very hard on skills and playing soccer. Grey is loving Miss Jodie's. Both Liam and Thijs are playing soccer. Luci and Mac are having a great time with their Mom at home doing all sorts of fun things. Beth is getting together with some friends and they are all going to take turns doing a "Two School" which will be great for Miss Lu.
So here we go for another school year. While I am not a big fan of Fall (it means winter is coming) time marches on as it does for all of us. At the end of each day I thank God for what that day brought. I try to be as productive as I can be each and every day with varying results.
Here's to a warm and loooong Indian Summer!
Love to All, Grace and Peace,
Peggy
We had a great Labor Day at the cottage, the entire family was there...all 19 of us! The kids had one last day with tubing, boating and swimming. Sunday afternoon brought some serious trail riding with a few people caught in a downpour. It was a lot of fun and a lot of hot showers! Monday, everyone pitched in to help close up the cottage. It's amazing how fast things get done with everyone working. They all left early Monday afternoon, Den and I stayed on for the finishing touches and then to Reeds and then back and forth for 3 days in AA! It was busy and I was so glad to get home Friday afternoon. It sure was an improvement from a year ago when I was in the hospital for 6 days with a blood clot in my leg and lungs so I am not complaining.
Everyone is busy now and into their school and sports schedule. Eli is on the Varsity Tennis Team, Annie is playing 8th grade volleyball and club soccer, Emma is dancing 2 nights a week. Ella is at gymnastics 3-4 times a week working very hard on skills and playing soccer. Grey is loving Miss Jodie's. Both Liam and Thijs are playing soccer. Luci and Mac are having a great time with their Mom at home doing all sorts of fun things. Beth is getting together with some friends and they are all going to take turns doing a "Two School" which will be great for Miss Lu.
So here we go for another school year. While I am not a big fan of Fall (it means winter is coming) time marches on as it does for all of us. At the end of each day I thank God for what that day brought. I try to be as productive as I can be each and every day with varying results.
Here's to a warm and loooong Indian Summer!
Love to All, Grace and Peace,
Peggy
Saturday, August 10, 2013
A Long Overdue Update
Sorry it's been so long since you heard from me. I kept waiting because I wanted to give you a great report. Unfortunately that has not been the case. Yes my liver has calmed down with my bilirubin a tenth of a percentage over normal. However my itching (all over my body) continues on. We now believe we may be dealing with a subcutaneous case of graft vs. host in my skin. The battle rages on as I try to recuperate. Also with the weaning off of the steroids has resulted in great fatigue as Dr. Magineau warned me it might. I so wanted to be the one that did not have fatigue, unfortunately that has not been the case either. I am trying to not get too discouraged. I had a conversation with a woman in the waiting room who had been through the same thing and her itching finally resolved, so that gave me hope.
I am so grateful for my home and being able to rest whenever I need to. I see many people at U of M who would gladly exchange their walkers and wheelchairs for my itching. I work really hard at having a good perspective. The return to normal is a long and slow process indeed. I will be seeing a dermatologist and the graft vs. host specialist in the next few weeks. Again, I am so grateful for U of M and their care for me, it is a true team effort. Dr. Magineau assured me this week that we will get through this.
Now in other news we have a new grandson McClure Denison, aka Mac. He was born July 20. Beth, Chad and Luci have adjusted well to this new addition to their family. Luci absolutely dotes on him so no sibling rivalry, at least at this point. All other members of the family are doing well. The Reed family is here this weekend due to the wedding of Glen's brother Rick. I always love it when family is near.
So there you go, the highs and the lows for me. Hopefully, on my next update I will be able to tell I have had relief from this endless itching! As always, I thank you for your prayers and your care and concern.
Grace and Peace, Peggy
I am so grateful for my home and being able to rest whenever I need to. I see many people at U of M who would gladly exchange their walkers and wheelchairs for my itching. I work really hard at having a good perspective. The return to normal is a long and slow process indeed. I will be seeing a dermatologist and the graft vs. host specialist in the next few weeks. Again, I am so grateful for U of M and their care for me, it is a true team effort. Dr. Magineau assured me this week that we will get through this.
Now in other news we have a new grandson McClure Denison, aka Mac. He was born July 20. Beth, Chad and Luci have adjusted well to this new addition to their family. Luci absolutely dotes on him so no sibling rivalry, at least at this point. All other members of the family are doing well. The Reed family is here this weekend due to the wedding of Glen's brother Rick. I always love it when family is near.
So there you go, the highs and the lows for me. Hopefully, on my next update I will be able to tell I have had relief from this endless itching! As always, I thank you for your prayers and your care and concern.
Grace and Peace, Peggy
Sunday, June 23, 2013
Time For Another Update
To All of my Family, Friends,
I know I haven't posted in 2 weeks. There has been a steady trend in my numbers both liver enzymes and bilirubin count going down. I am still on the high side of normal, my bili is down to 2.4 and am still itching, maybe not quite as bad as before. As it continually slides down (I hope and pray) I should get more and more relief. I still take a prescription antihistamine, oatmeal baths and Sarna lotion. Sarna (the name of the lotion) is amazing and can be used for any kind of itching, from my problems to poison ivy to insect bites. I buy mine from Walgreen's. I will be sending some to the cottage this summer as someone is always itching for some reason or another and it is really great stuff.
Speaking of the cottage...I may not be able to go for the 4th. We are in the process of getting our well water retested. We tested it last fall and found we had bacteria in the water which for the normal person is not a problem but for me, as I am so immunosuppressed, it is a problem. Plus we have had our first leak and evidently there is some damage as well as some mold. How much damage we won't know until Den gets there and can see for himself what we need to do to fix it. I can't come into any kind of a situation with mold so I may be staying back in Holland. Here at home I can walk without being "dusted" on the dirt roads. I go out every night after 8 and walk for at least 2 miles and it is so pleasant. There are certainly worse things than staying home. Last summer the bone pain I was experiencing was much worse so I am not complaining! I have no desire to go backwards, especially now that I feel I am moving forward again.
I want all of you to know I do feel I am moving forward again. I feel better and stronger every day. When I walk I am using hand weights to try to build some muscle back into my arms. Yes, I do 4 reps of everything girls....and I only made you do 2 reps! Or I lift to failure, which means I can't do another one for those of you who never lifted for me.
The Lord and I have had some good conversations lately and I am hopeful and optimistic about my recovery. I know I told you before but you only have to make one trip to Ann Arbor with me to understand my viewpoint. I have talked with people who have had ugly flare ups with GVHD 2-8 years out of transplant so one can never tell. For today the sun is shining, the breeze is warm, I feel stronger and I choose to enjoy the bounty of the day. I am thankful for reliable transportation for my trips to Ann Arbor, I love choosing a different restaurant for lunch each time, I am grateful for friends who accompany me (Lynette and Jane) and make me laugh.....and talk "Cheer". I am grateful for the frozen meals I can pop in the oven when I have been gone all day from our "House Church". I am grateful I have 2 daughters who live in the area and can give me my daily infusion when Den is not available. I am grateful for a family that loves (sometimes smothers) me with the best of intentions. I am grateful for all of you who seem to care and remember me in prayer. Thank you!
I go back to Ann Arbor tomorrow (Monday) and Tuesday, then again Friday for my ECP treatments. The nurses there are fabulous and sometimes I feel as though I have joined another family. They care so much and rejoice with me as my numbers fall. They are fully invested in my recovery.
I hope this information helps you know how I am doing. I talk to so many who read this blog and they all thank me for the updates.
On another note, we are eagerly anticipating the arrival of Baby Cunningham...due July 22 but this G'ma thinks Beth won't go that long, which may be another good reason to stay back home. I am so excited to meet our newest little one. What fun!
I thank God for all of you all of the time, what wonderful, caring friends and family I have.
Grace and Peace,
Peggy
I know I haven't posted in 2 weeks. There has been a steady trend in my numbers both liver enzymes and bilirubin count going down. I am still on the high side of normal, my bili is down to 2.4 and am still itching, maybe not quite as bad as before. As it continually slides down (I hope and pray) I should get more and more relief. I still take a prescription antihistamine, oatmeal baths and Sarna lotion. Sarna (the name of the lotion) is amazing and can be used for any kind of itching, from my problems to poison ivy to insect bites. I buy mine from Walgreen's. I will be sending some to the cottage this summer as someone is always itching for some reason or another and it is really great stuff.
Speaking of the cottage...I may not be able to go for the 4th. We are in the process of getting our well water retested. We tested it last fall and found we had bacteria in the water which for the normal person is not a problem but for me, as I am so immunosuppressed, it is a problem. Plus we have had our first leak and evidently there is some damage as well as some mold. How much damage we won't know until Den gets there and can see for himself what we need to do to fix it. I can't come into any kind of a situation with mold so I may be staying back in Holland. Here at home I can walk without being "dusted" on the dirt roads. I go out every night after 8 and walk for at least 2 miles and it is so pleasant. There are certainly worse things than staying home. Last summer the bone pain I was experiencing was much worse so I am not complaining! I have no desire to go backwards, especially now that I feel I am moving forward again.
I want all of you to know I do feel I am moving forward again. I feel better and stronger every day. When I walk I am using hand weights to try to build some muscle back into my arms. Yes, I do 4 reps of everything girls....and I only made you do 2 reps! Or I lift to failure, which means I can't do another one for those of you who never lifted for me.
The Lord and I have had some good conversations lately and I am hopeful and optimistic about my recovery. I know I told you before but you only have to make one trip to Ann Arbor with me to understand my viewpoint. I have talked with people who have had ugly flare ups with GVHD 2-8 years out of transplant so one can never tell. For today the sun is shining, the breeze is warm, I feel stronger and I choose to enjoy the bounty of the day. I am thankful for reliable transportation for my trips to Ann Arbor, I love choosing a different restaurant for lunch each time, I am grateful for friends who accompany me (Lynette and Jane) and make me laugh.....and talk "Cheer". I am grateful for the frozen meals I can pop in the oven when I have been gone all day from our "House Church". I am grateful I have 2 daughters who live in the area and can give me my daily infusion when Den is not available. I am grateful for a family that loves (sometimes smothers) me with the best of intentions. I am grateful for all of you who seem to care and remember me in prayer. Thank you!
I go back to Ann Arbor tomorrow (Monday) and Tuesday, then again Friday for my ECP treatments. The nurses there are fabulous and sometimes I feel as though I have joined another family. They care so much and rejoice with me as my numbers fall. They are fully invested in my recovery.
I hope this information helps you know how I am doing. I talk to so many who read this blog and they all thank me for the updates.
On another note, we are eagerly anticipating the arrival of Baby Cunningham...due July 22 but this G'ma thinks Beth won't go that long, which may be another good reason to stay back home. I am so excited to meet our newest little one. What fun!
I thank God for all of you all of the time, what wonderful, caring friends and family I have.
Grace and Peace,
Peggy
Thursday, June 6, 2013
June's Update
Well friends and family.....I'm still here! There has not been a remarkable progress, just pretty slow and steady. My bilirubin is down to 4.2 but I am still itching terribly. I am interested to see at what point the itching goes away. Just to remind you and myself, normal is 0.2-1.2. At it's highest it was 7.4, so it is going down. The Dr. has started to wean me off the steroids so hopefully it won't shoot back up. If you want to pray for specifics please pray for this itching to cease! Liver enzymes have not diminished greatly, evidently this entire process can take quite a bit of time.
I saw Dr. Kitco last week, she is a GVHD specialist and she diagnosed me with acute, late onset graft vs. host disease as opposed to chronic gvhd. She recommended 3 treatments a week with ECP. So I spend Mondays, Tuesdays and Fridays in Ann Arbor. Each treatment takes about 2-2 1/2 hrs. I have been doing three treatment a week for the past three weeks now. I go again tomorrow for labs followed by ECP. My good friend Lynette is going with me so Den can catch up on some much needed work. Needless to say this has really cut into his time, so thanks in advance Lynette for giving him some time off from me!
Dr. Kitco said I would notice being more tired as I go off the steroids. Their main function is to stem the growth of donor cells and let my liver heal. They also give me energy. I keep thinking it's all in my head but I did take 3 short naps today. I felt so fatigued and just had to give into it. Maybe it is the power of suggestion but I'll give it a few more days to see how my energy level goes.
Last night our small group from Mars had a cooking extravaganza. They must have sent home 20 meals with us! Everything from enchiladas to coq au vin! Feeling the way I do it is such a blessing from such loving and supportive friends. Thanks to each of you for helping us out! It will be so nice tomorrow night after a day in Ann Arbor to just pop something into the oven. I can(and do) cook but when I hit the rough patches it will be nice to have something prepared.
I have so much to be thankful for. I can enjoy my family. Luci took her afternoon nap here so we had time together. I have been able to enjoy Liam's, Thijs', Emma's, Ella's and Grey's soccer games. We were able to attend Annie's Spring Concert. But I must admit this itching has been intense and I will be SO glad when it subsides!
That's all I have...it's a slow process as I said...patience and more patience is needed. It is possible for me to develop GVHD in other areas such as skin, gut etc. and I am far from that! Every time I go to U of M I see people with walkers and wheelchairs because of their complications with GVHD. Maybe it's a good thing I go so often because it makes me appreciate what I have. I am sure many would be glad to trade places with me. It has been a full year since my initial diagnosis and I so want my energy and life back. We were warned this would take time and they were certainly right.
One of these days I am going to write a blog post and not even talk about my health! I am trying to keep some balance to my life and not to overly dwell on something I cannot control. Perhaps I will just do a family update!
Thanks for listening and for caring...prayers for resolution of itching and ENERGY!!!
Love to All.......Grace and Peace,
Peggy
I saw Dr. Kitco last week, she is a GVHD specialist and she diagnosed me with acute, late onset graft vs. host disease as opposed to chronic gvhd. She recommended 3 treatments a week with ECP. So I spend Mondays, Tuesdays and Fridays in Ann Arbor. Each treatment takes about 2-2 1/2 hrs. I have been doing three treatment a week for the past three weeks now. I go again tomorrow for labs followed by ECP. My good friend Lynette is going with me so Den can catch up on some much needed work. Needless to say this has really cut into his time, so thanks in advance Lynette for giving him some time off from me!
Dr. Kitco said I would notice being more tired as I go off the steroids. Their main function is to stem the growth of donor cells and let my liver heal. They also give me energy. I keep thinking it's all in my head but I did take 3 short naps today. I felt so fatigued and just had to give into it. Maybe it is the power of suggestion but I'll give it a few more days to see how my energy level goes.
Last night our small group from Mars had a cooking extravaganza. They must have sent home 20 meals with us! Everything from enchiladas to coq au vin! Feeling the way I do it is such a blessing from such loving and supportive friends. Thanks to each of you for helping us out! It will be so nice tomorrow night after a day in Ann Arbor to just pop something into the oven. I can(and do) cook but when I hit the rough patches it will be nice to have something prepared.
I have so much to be thankful for. I can enjoy my family. Luci took her afternoon nap here so we had time together. I have been able to enjoy Liam's, Thijs', Emma's, Ella's and Grey's soccer games. We were able to attend Annie's Spring Concert. But I must admit this itching has been intense and I will be SO glad when it subsides!
That's all I have...it's a slow process as I said...patience and more patience is needed. It is possible for me to develop GVHD in other areas such as skin, gut etc. and I am far from that! Every time I go to U of M I see people with walkers and wheelchairs because of their complications with GVHD. Maybe it's a good thing I go so often because it makes me appreciate what I have. I am sure many would be glad to trade places with me. It has been a full year since my initial diagnosis and I so want my energy and life back. We were warned this would take time and they were certainly right.
One of these days I am going to write a blog post and not even talk about my health! I am trying to keep some balance to my life and not to overly dwell on something I cannot control. Perhaps I will just do a family update!
Thanks for listening and for caring...prayers for resolution of itching and ENERGY!!!
Love to All.......Grace and Peace,
Peggy
Sunday, May 12, 2013
The Road to Recovery is Never Straight
I know it's time for an update but have been waiting to feel better so I could give you all good news. Unfortunately the GVHD in my liver has not been cooperating. I received some information from Be The Match and it talked about the curves to expect at about the 6 month recovery period. So now I know it's normal to have a curve in the road.
My liver enzymes have gone down but my bilirubin has continued to rise. With that the itching I am experiencing is significant. In addition to the steroids I am on now (prednisone) ....are you ready for this? I am receiving treatment that is called Extracorporeal Photopheresis, here after know as ECP. The technology associated with this is mind boggling to me. A nurse in the ECP unit (at UofM) hooks me up to a machine. It takes about 5% of my blood, separating the red, white cells and plasma according to their weight. This happens with a centrifuge like process. When the cells have separated out the white blood cells are exposed to ultraviolet light. When this process is done the blood is given back to me. They have found ECP fights GVHD quite well. However it is not done overnight, it can be several weeks before improvement. I had 3 treatments last week and will have 2 treatments this week. The entire process takes about 2 hours. I am praying this helps sooner rather than later because I am extremely uncomfortable. Believe me whatever helps itching I have tried, oatmeal baths, baking soda paste on my skin, prescription drugs etc. It gives me some relief temporarily....all I can say is I hope babies don't experience this when they are jaundiced. Please pray that my bilirubin would start to come down.
Other than that, which is quite enough, I continue to do well and have kept healthy. I still see people at the BMT Clinic in really bad shape so I know I am fortunate to be as healthy as I am. However I know that my liver needs to heal, so am doing everything possible to make that happen.
Sorry I can't do better than that, I feel as though I am letting people down by not improving more rapidly. I will stay the course and pray that my liver heals.
On another note I have had a wonderful Mother's Day and I hope all of the Mamas out there have had the same. I love seeing your pics on Facebook. It seems like just last year you all were in High School and now many of you are the same age I was when I was coaching you! How time does pass quickly.
Please don't worry about me, if you ever think of me just say a prayer that I would heal. I will get through this. I haven't come this far to give up now! I keep thinking God must be keeping me around for some purpose and I pray this becomes clear to me, that I would be doing what He would have me do.
Blessings to each of you...Grace and Peace...Peggy
My liver enzymes have gone down but my bilirubin has continued to rise. With that the itching I am experiencing is significant. In addition to the steroids I am on now (prednisone) ....are you ready for this? I am receiving treatment that is called Extracorporeal Photopheresis, here after know as ECP. The technology associated with this is mind boggling to me. A nurse in the ECP unit (at UofM) hooks me up to a machine. It takes about 5% of my blood, separating the red, white cells and plasma according to their weight. This happens with a centrifuge like process. When the cells have separated out the white blood cells are exposed to ultraviolet light. When this process is done the blood is given back to me. They have found ECP fights GVHD quite well. However it is not done overnight, it can be several weeks before improvement. I had 3 treatments last week and will have 2 treatments this week. The entire process takes about 2 hours. I am praying this helps sooner rather than later because I am extremely uncomfortable. Believe me whatever helps itching I have tried, oatmeal baths, baking soda paste on my skin, prescription drugs etc. It gives me some relief temporarily....all I can say is I hope babies don't experience this when they are jaundiced. Please pray that my bilirubin would start to come down.
Other than that, which is quite enough, I continue to do well and have kept healthy. I still see people at the BMT Clinic in really bad shape so I know I am fortunate to be as healthy as I am. However I know that my liver needs to heal, so am doing everything possible to make that happen.
Sorry I can't do better than that, I feel as though I am letting people down by not improving more rapidly. I will stay the course and pray that my liver heals.
On another note I have had a wonderful Mother's Day and I hope all of the Mamas out there have had the same. I love seeing your pics on Facebook. It seems like just last year you all were in High School and now many of you are the same age I was when I was coaching you! How time does pass quickly.
Please don't worry about me, if you ever think of me just say a prayer that I would heal. I will get through this. I haven't come this far to give up now! I keep thinking God must be keeping me around for some purpose and I pray this becomes clear to me, that I would be doing what He would have me do.
Blessings to each of you...Grace and Peace...Peggy
Tuesday, April 23, 2013
Steps In The Right Direction
Thanks for your prayers and words of encouragement. The diagnosis of GVHD in the liver was confirmed in that when the immunosuppression drugs were increased numbers started to come down. Evidently it is a classic case where the donor cells increased dramatically and started to attack my liver. Results of a test from 3 weeks ago show 23% my cells now and 77% donor cells in my blood lines. I was almost completely off the immunosuppression drug. The plan is to hold steady, increase the tacrolimus (immunosuppression aka tacro) and give my liver a chance to calm down by holding back the donor cells for a time.
To give you a better idea without being too boring my ALK went from 810 to 673, normal range 30-130, ALT 665 down to 321, normal range 7-35 and AST from 365 down to 115, normal range 8-30. As you can see there is a ways to go before normal even with huge drops. Dr. Magineau expressed his surprise that the numbers dropped as far as they did in one week. He even had a smile on his face yesterday! It took 3 weeks for the numbers to climb and will take at least that long to return to near normal levels. Itching on my body is a side effect of liver inflammation and that was intolerable for about 24 hrs. last week. I am now on a prescription for the itching and a special cream. It's not gone but is more tolerable. Needless to say this has not been fun! I really don't want to complain, it's not as though I am in any pain, I'm just "keeping it real" for all of you.
Again, friends and family continue to help us out. We had a lovely Sunday dinner and afternoon with good friends Helen and Rob. We spent Sunday evening and night with Jen, Glen and crew which is always fun. . We had a 7:45 am appointment for labs and U of M is only a 45 minute drive from their house which is nice for those early appointments. Last night Kate and Dave had us over for dinner. Do you see how pampered we are? Den and I are very appreciative for each of you...prayers, meals and great company. How could we ask for more?
I am getting a great lesson in patience, which has always been in short supply for me. I do everything the Dr. tells me to do and wait for those levels to come down and the itching to disappear! I cannot tell you enough how much your messages, prayers and encouragement mean to me. Just when I become complacent with the healing process the Lord sends me back to him for reassurance and comfort. That's OK with me. This will all eventually get resolved, of that I am confident. I know who holds my future and who is my greatest comfort.
Enjoy your day...... Spring will eventually come and we will all appreciate it more because of the long winter.....the same goes for me personally.
Grace and Peace, Peggy
To give you a better idea without being too boring my ALK went from 810 to 673, normal range 30-130, ALT 665 down to 321, normal range 7-35 and AST from 365 down to 115, normal range 8-30. As you can see there is a ways to go before normal even with huge drops. Dr. Magineau expressed his surprise that the numbers dropped as far as they did in one week. He even had a smile on his face yesterday! It took 3 weeks for the numbers to climb and will take at least that long to return to near normal levels. Itching on my body is a side effect of liver inflammation and that was intolerable for about 24 hrs. last week. I am now on a prescription for the itching and a special cream. It's not gone but is more tolerable. Needless to say this has not been fun! I really don't want to complain, it's not as though I am in any pain, I'm just "keeping it real" for all of you.
Again, friends and family continue to help us out. We had a lovely Sunday dinner and afternoon with good friends Helen and Rob. We spent Sunday evening and night with Jen, Glen and crew which is always fun. . We had a 7:45 am appointment for labs and U of M is only a 45 minute drive from their house which is nice for those early appointments. Last night Kate and Dave had us over for dinner. Do you see how pampered we are? Den and I are very appreciative for each of you...prayers, meals and great company. How could we ask for more?
I am getting a great lesson in patience, which has always been in short supply for me. I do everything the Dr. tells me to do and wait for those levels to come down and the itching to disappear! I cannot tell you enough how much your messages, prayers and encouragement mean to me. Just when I become complacent with the healing process the Lord sends me back to him for reassurance and comfort. That's OK with me. This will all eventually get resolved, of that I am confident. I know who holds my future and who is my greatest comfort.
Enjoy your day...... Spring will eventually come and we will all appreciate it more because of the long winter.....the same goes for me personally.
Grace and Peace, Peggy
Tuesday, April 16, 2013
A Curve In The Road
Where do I begin? Yesterday as I entered the Outpatient Patient Clinic my main concern was, "Is this working?" It had been such smooth sailing I was questioning the effect of the entire process. I worried that my stem cells had been too much for the donor cells and that mine were winning this war. Everyone says and everything you read says a LITTLE gvhd is a good thing, you know that the donor cells are proliferating and host cells are rebelling. With gvhd the cancer has a lesser chance of reappearing. As with most things in life I was worried about the wrong thing.
The minute Dr. Magineau entered the room he was concerned about my liver. Lab work done 2hrs previously showed inflammation of my liver. As an example (won't bore you with all lab counts) my ALK went from 172 (which is high) to 810, so quite a significant jump. What did he attribute this to you ask? GVHD of the liver. Now before anyone gets too worried because I am well past the 100 day mark this is considered chronic gvhd not acute gvhd. Chronic gvhd tends to respond to treatment more easily. The Dr. discontinued one med and gave me another plus I have to have daily IV infusions of another. The infusion will only take one hour a day so not too bad. Needless to say my port removal appt. was cancelled for today. The other good news is that my liver is neither swollen or sore to the touch. I feel great! Also all of my other labs were excellent, numbers going just where they should. So here is hoping and praying the adjustments he made will help. The next step would be steroids and we would really like to avoid that if at all possible.
So for those of you who have been faithful prayer warriors please pray that my liver would calm down. In a strange way, as I can be a strange person, I have been informed that indeed the process is working, now just not to let it get out of hand because we all need our liver!
Our family vacay to Florida was relaxing and wonderful. Our trip, Den, myself, Sarah, Ella and Grey started with car problems in Anderson, Indiana. It put a kink in our first day and then more travel than we planned for the second. We are so thankful it happened when we stopped for gas and there was a dealership one block away. The mechanic worked till closing, went home for dinner and came back and worked through the evening. We were back on the road by noon the next day! Our house with 6 bedrooms and more importantly 5 bathrooms (for 17 people!) was great. We had sunshine and warm weather, lots of pool and beach time. We all left reluctantly for Michigan.....
Again thank you for all your words of encouragement. I am getting out more and it feels so good. Prayers for the liver inflammation would be greatly appreciated.
Grace and Peace.....enjoy and find the joy in TODAY!
Peggy
The minute Dr. Magineau entered the room he was concerned about my liver. Lab work done 2hrs previously showed inflammation of my liver. As an example (won't bore you with all lab counts) my ALK went from 172 (which is high) to 810, so quite a significant jump. What did he attribute this to you ask? GVHD of the liver. Now before anyone gets too worried because I am well past the 100 day mark this is considered chronic gvhd not acute gvhd. Chronic gvhd tends to respond to treatment more easily. The Dr. discontinued one med and gave me another plus I have to have daily IV infusions of another. The infusion will only take one hour a day so not too bad. Needless to say my port removal appt. was cancelled for today. The other good news is that my liver is neither swollen or sore to the touch. I feel great! Also all of my other labs were excellent, numbers going just where they should. So here is hoping and praying the adjustments he made will help. The next step would be steroids and we would really like to avoid that if at all possible.
So for those of you who have been faithful prayer warriors please pray that my liver would calm down. In a strange way, as I can be a strange person, I have been informed that indeed the process is working, now just not to let it get out of hand because we all need our liver!
Our family vacay to Florida was relaxing and wonderful. Our trip, Den, myself, Sarah, Ella and Grey started with car problems in Anderson, Indiana. It put a kink in our first day and then more travel than we planned for the second. We are so thankful it happened when we stopped for gas and there was a dealership one block away. The mechanic worked till closing, went home for dinner and came back and worked through the evening. We were back on the road by noon the next day! Our house with 6 bedrooms and more importantly 5 bathrooms (for 17 people!) was great. We had sunshine and warm weather, lots of pool and beach time. We all left reluctantly for Michigan.....
Again thank you for all your words of encouragement. I am getting out more and it feels so good. Prayers for the liver inflammation would be greatly appreciated.
Grace and Peace.....enjoy and find the joy in TODAY!
Peggy
Tuesday, March 26, 2013
More Of The Same
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.
.
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
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.
.
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 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
Tuesday, February 19, 2013
Save The Date!
We are so excited to let you know about an awesome event in our area to support Be The Match!
We hope you are able to head out to the Mitten Brewing Company during the month of February or on Monday, February 25th. What a great way to help add potential donors to the Registry! YOU could save a life...please consider joining Be The Match. We will be forever grateful to mom's donor.
Hope to see you there!
Beth
We hope you are able to head out to the Mitten Brewing Company during the month of February or on Monday, February 25th. What a great way to help add potential donors to the Registry! YOU could save a life...please consider joining Be The Match. We will be forever grateful to mom's donor.
Hope to see you there!
Beth
Friday, February 15, 2013
Good Results!
Well I finally got my call from U of M this morning! Evidently my Dr. is at a conference and needed to review the results before I could be called.
At any rate, the bone marrow biopsy showed NO signs of disease. So I went from 2 biopsies that showed Stage 3-4 disease to no sign of disease. They followed 3 cell lines. Two of the cell lines showed 100% donor cells. A third line which showed chimerism before (a ratio between donor stem cells and host stem cells) showed 41% my cells. It was 35% before and the nurse said that was an insignificant amount of increase. She also said they will probably lower my immunosuppresion drugs at my next appointment and that usually does the trick.
To tell you the truth I am really surprised at the absence of disease. I have been warned over and over again that myelofibrosis takes a long time to heal. I was expecting a lower level of disease to be present. One of the PAs in the hospital explained to me that with my disease not only is there scarring in the marrow but also pockets, and it is very difficult for the donor stem cells to find their way and to engraft.
Naturally it will be REALLY good when everything is 100% donor cells but realistically that could still take a while. I am grateful for what I have for today.
My strength is starting to come back. I don't think the transplant took me down. I think the chemotherapy prior to the transplant and what they give you so the donor cells thrive made me so weak, shaky and tired. I do feel as though I am coming back and that also lifts my spirits!
I am so thankful for what modern medicine can do. More than that I have felt the Lord lifting me up, not just from my own prayers but all of yours. I cannot count how many people have been praying for me, caring for me and all of my family. I still have a ways to go so I won't get ahead of myself but when you have been handed so much bad news, a little good news goes a long way! My Dr. told me I need to appreciate the "right now" and I intend to follow more of his good advice.
So one more plug for Be the Match.com. If you are young and healthy enough to become a donor, please consider how easy it is to be someone's Hero and save a life. You will receive a kit at home which requires 4 cheek swabs to be on the Registry. If you get the call you must be willing to accept the responsibility to donate. You will get 5-6 neupogen shots, one each day. If you are not able to go to get them they will come to your house and administer them. Then you go to your local donation center, they hook you up as if you are giving blood, they take your blood and it goes through a machine that spins out the stem cells and puts your blood back into you. Your stem cells regenerate in about 24-48 hours. Folks that is it! Imagine saving a life by some pretty minor inconvenience. I spoke with a woman this week who donated to a 4yr. old boy in Argentina who had leukemia and he is now 21yrs. old. We have this life saving technology and only need donors. Remember out of approximately 10 million donors I only had 2 potentials. About 5,000 people die each year due to a lack of a donor. So there you go, please consider it carefully.
Again, my love and appreciation to each of you.
Grace and Peace, Peggy
At any rate, the bone marrow biopsy showed NO signs of disease. So I went from 2 biopsies that showed Stage 3-4 disease to no sign of disease. They followed 3 cell lines. Two of the cell lines showed 100% donor cells. A third line which showed chimerism before (a ratio between donor stem cells and host stem cells) showed 41% my cells. It was 35% before and the nurse said that was an insignificant amount of increase. She also said they will probably lower my immunosuppresion drugs at my next appointment and that usually does the trick.
To tell you the truth I am really surprised at the absence of disease. I have been warned over and over again that myelofibrosis takes a long time to heal. I was expecting a lower level of disease to be present. One of the PAs in the hospital explained to me that with my disease not only is there scarring in the marrow but also pockets, and it is very difficult for the donor stem cells to find their way and to engraft.
Naturally it will be REALLY good when everything is 100% donor cells but realistically that could still take a while. I am grateful for what I have for today.
My strength is starting to come back. I don't think the transplant took me down. I think the chemotherapy prior to the transplant and what they give you so the donor cells thrive made me so weak, shaky and tired. I do feel as though I am coming back and that also lifts my spirits!
I am so thankful for what modern medicine can do. More than that I have felt the Lord lifting me up, not just from my own prayers but all of yours. I cannot count how many people have been praying for me, caring for me and all of my family. I still have a ways to go so I won't get ahead of myself but when you have been handed so much bad news, a little good news goes a long way! My Dr. told me I need to appreciate the "right now" and I intend to follow more of his good advice.
So one more plug for Be the Match.com. If you are young and healthy enough to become a donor, please consider how easy it is to be someone's Hero and save a life. You will receive a kit at home which requires 4 cheek swabs to be on the Registry. If you get the call you must be willing to accept the responsibility to donate. You will get 5-6 neupogen shots, one each day. If you are not able to go to get them they will come to your house and administer them. Then you go to your local donation center, they hook you up as if you are giving blood, they take your blood and it goes through a machine that spins out the stem cells and puts your blood back into you. Your stem cells regenerate in about 24-48 hours. Folks that is it! Imagine saving a life by some pretty minor inconvenience. I spoke with a woman this week who donated to a 4yr. old boy in Argentina who had leukemia and he is now 21yrs. old. We have this life saving technology and only need donors. Remember out of approximately 10 million donors I only had 2 potentials. About 5,000 people die each year due to a lack of a donor. So there you go, please consider it carefully.
Again, my love and appreciation to each of you.
Grace and Peace, Peggy
Monday, February 11, 2013
Nothing But Good News
Well we just got home from Ann Arbor after an appointment with Dr. Magineau. He was very pleased with how I look and how I feel. What he knew from the bone marrow biopsy he was pleased. The first two biopsies that I had (pre transplant) resulted in what they call "dry taps". That is exactly what it sounds like. They were unable to get any pelvic bone for the first several taps (needle into my pelvic bone). My 30 day biopsy resulted in some pinkish bone. The one I had last week was nice and bloody, Dr. Magineau called it "juicy". I don't mean to turn any of you off with my descriptions but when your bone marrow doesn't produce blood, that's a problem! So just from the looks of things my bone marrow is healing.
An important factor which is called chimerism, which is the ratio of my donor's cells to my cells is not available yet. I have to call back on Thursday to get those results, which as you can imagine is pretty important. Last time if you remember, one cell line they followed was 100% donor cells and the other one was 65% donor cells and 35% me. What they don't want to see is my percentage growing. It is OK for it to be the same. As he has told me many times over, this is going to take time. So I wait.
Another question I had regarding blood transfusions. He said some people go a full year getting transfusions and that is perfectly normal. We don't know how long I will need them but probably will for the foreseeable future. He may also start tapering some of the many meds. that I am taking, although I tolerate them better than many people do.
I am gaining strength and feel better today than I did a week ago. It would seem that I am gaining ground. I still need to be very careful, especially not to be around anyone who is sick. I carefully follow through with everything the Dr. asks of me. He told me today that I am one of his "Star Patients" so that made me feel good. I will be honest here and tell you I am anxious to hear the final results of chimerism and to know for sure that my old diseased cells are on the decline and the new healthy ones are growing and are healing my non functioning bone marrow.
I still covet your prayers and am trying not to let anxious thoughts rule my thought life. I have so much to be grateful for. All of you have lifted my spirits in so many ways and have exemplified true friendship. My family also has been so supportive and helpful. I know I keep saying this but I could never thank all of you enough for what you have done for me. Please accept my heartfelt thanks. I had no idea so many people cared so much for me. I will update the blog when I get the results back later this week.
Grace and Peace to each of you. Peggy
An important factor which is called chimerism, which is the ratio of my donor's cells to my cells is not available yet. I have to call back on Thursday to get those results, which as you can imagine is pretty important. Last time if you remember, one cell line they followed was 100% donor cells and the other one was 65% donor cells and 35% me. What they don't want to see is my percentage growing. It is OK for it to be the same. As he has told me many times over, this is going to take time. So I wait.
Another question I had regarding blood transfusions. He said some people go a full year getting transfusions and that is perfectly normal. We don't know how long I will need them but probably will for the foreseeable future. He may also start tapering some of the many meds. that I am taking, although I tolerate them better than many people do.
I am gaining strength and feel better today than I did a week ago. It would seem that I am gaining ground. I still need to be very careful, especially not to be around anyone who is sick. I carefully follow through with everything the Dr. asks of me. He told me today that I am one of his "Star Patients" so that made me feel good. I will be honest here and tell you I am anxious to hear the final results of chimerism and to know for sure that my old diseased cells are on the decline and the new healthy ones are growing and are healing my non functioning bone marrow.
I still covet your prayers and am trying not to let anxious thoughts rule my thought life. I have so much to be grateful for. All of you have lifted my spirits in so many ways and have exemplified true friendship. My family also has been so supportive and helpful. I know I keep saying this but I could never thank all of you enough for what you have done for me. Please accept my heartfelt thanks. I had no idea so many people cared so much for me. I will update the blog when I get the results back later this week.
Grace and Peace to each of you. Peggy
Tuesday, January 29, 2013
Boring Is Good!
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
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 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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