Sorry for the lengthy delay in posting! I kept waiting for something exciting to happen so I could tell you all about it but.....zero excitement!
I did not know a person could sleep so many hours in a day. I would say 18 hours of sleep for me would not be an exaggeration. Just. cannot. keep. my. head. off the. pillow. It makes for a very exciting day for Den as you can imagine. He took a "get out of jail" card today and went to South Bend to (hopefully) watch our nephew Jarrod play for UK against Notre Dame today. Juliet was here today and Jen with Emma is spending the night, which gave me a new audience to sleep in front of.
I don't want to complain because I know I am doing well, but really the fatigue, shortness of b reath and light headness really takes it's toll on me. I have some skin issues going on that may possibly be the beginning of gvhd. I itch everywhere. It is pretty intense. I have medicine for it but guess what the side effects are ? That's right...fatigue etc. I see my Dr. at least once a week, on Monday so we will see what he has to say. For now I pop the pills and I sleep. Everything I read says it takes a year to feel normal and I am really beginning to believe it!
We have had some very welcome visitors, Alversons, Curtis', Jan Currey were here. Due to unexpected time at the hospital we only saw them for about 30 minutes. Jane and Lynette came over too, we had a great time too! Juliet took me to my Dr. apt. today and Jen is spending the night.
"I have taken you along a path that has highlighted your need for Me, placing you in situations where your strengths were irrelevant and your weaknesses were glaringly evident. You have learned to thank Me for hard times and difficult journeys, trusting that through them I accomplish My best work ."
Thank you again for prayers, encouragement and all that you do to enable me through tough times. I think I am beginning to really realize the length of this journey and my attitude is not always the best. Your presence in my life holds me accountable...thank you.
Grace and Peace, Peggy
Thursday, November 29, 2012
Friday, November 16, 2012
Time for an Update
Life is pretty boring at the apartment and that is how we like it! What I mean to say is, absolutely nothing exciting or out of the ordinary is happening. No infections, no graft vs. host, no fevers no anything and that is all good. We have gone back to the BMT Clinic 3 times this week. I have had blood draws each time so that they can calibrate my medication levels and change dosage to optimum levels. Dr. Magineau's PA told us today we are doing everything right so just keep with the program.
Den has turned into quite the nurse. I have 2 medications that require at home infusion. Not only can he manage the infusion he has also changed the lines by himself and changed my dressing around my neostar (the type of "port" that I have). He really does a nice job. Not only does he handle the infusion he cleans the kitchen, vacuums, does the laundry and all other households chores while I snooze. My IV infusions takes 5 hours so it gives me plenty of time to nap. I asked today when I can take oral magnesium instead of the IV, maybe in another month we were told. As much as I hate being on IVs for 5 hours, it does give me a good excuse to rest and I have to admit that I need it.
Every day we get out for an outing. Fresh air and walking are both good for me but boy after a while I am ready to get home to rest. We have eaten out for lunch a few times and tonight we went out for dinner. It does seem good to get out everyday.
All this "down time" has given me plenty of time to think and ponder. I feel as though the Lord is really teaching me a lesson about prayer which has always mystified me. I mean if He is sovereign and omnipotent who am I to ask for anything? Yet there is no other way to explain how well I am doing other than the literally hundreds of people who are praying for me. Seriously, I have been so lifted up, I will never forget it. Yesterday I sensed God saying to me, "do you get it now?" I believe I am starting to get it. I almost hesitate to say this because at any time graft vs. host can rear it's ugly head or other complications. My worst fear is that her cells didn't engraft and that my diseased cells are the ones multiplying. I have my first post transplant bone marrow biopsy the week after Thanksgiving and we will be looking for her stem cells. I feel it's only right to share my fears as well as the praise for healing to be completely honest with all of you. You can tell me not to worry and really I am not consumed by fear, but I do have fearful, fleeting thoughts that I have to deal with. I know that if any of the fears are realized my Heavenly Father will be there for me and with me as will all of you.
Please don't think of me as being sad and melancholy, because I certainly am not. I just shake my head and marvel at how I am doing.....I am doing so well!
So there is your update. Again, I appreciate your prayers, they comfort me greatly.
Grace and Peace to each and everyone of you.....Peggy
Den has turned into quite the nurse. I have 2 medications that require at home infusion. Not only can he manage the infusion he has also changed the lines by himself and changed my dressing around my neostar (the type of "port" that I have). He really does a nice job. Not only does he handle the infusion he cleans the kitchen, vacuums, does the laundry and all other households chores while I snooze. My IV infusions takes 5 hours so it gives me plenty of time to nap. I asked today when I can take oral magnesium instead of the IV, maybe in another month we were told. As much as I hate being on IVs for 5 hours, it does give me a good excuse to rest and I have to admit that I need it.
Every day we get out for an outing. Fresh air and walking are both good for me but boy after a while I am ready to get home to rest. We have eaten out for lunch a few times and tonight we went out for dinner. It does seem good to get out everyday.
All this "down time" has given me plenty of time to think and ponder. I feel as though the Lord is really teaching me a lesson about prayer which has always mystified me. I mean if He is sovereign and omnipotent who am I to ask for anything? Yet there is no other way to explain how well I am doing other than the literally hundreds of people who are praying for me. Seriously, I have been so lifted up, I will never forget it. Yesterday I sensed God saying to me, "do you get it now?" I believe I am starting to get it. I almost hesitate to say this because at any time graft vs. host can rear it's ugly head or other complications. My worst fear is that her cells didn't engraft and that my diseased cells are the ones multiplying. I have my first post transplant bone marrow biopsy the week after Thanksgiving and we will be looking for her stem cells. I feel it's only right to share my fears as well as the praise for healing to be completely honest with all of you. You can tell me not to worry and really I am not consumed by fear, but I do have fearful, fleeting thoughts that I have to deal with. I know that if any of the fears are realized my Heavenly Father will be there for me and with me as will all of you.
Please don't think of me as being sad and melancholy, because I certainly am not. I just shake my head and marvel at how I am doing.....I am doing so well!
So there is your update. Again, I appreciate your prayers, they comfort me greatly.
Grace and Peace to each and everyone of you.....Peggy
Saturday, November 10, 2012
Released From the Hospital
What a change 4 days can make! As my counts continued to rise this week leaving the hospital became a reality. I didn't want to say I was leaving until I actually did, I did not want to "jinx" the whole thing. Plus I received several transfusion of plasma and red blood cells accompanied by benedryl....lots of benedryl.....so I was asleep for many hours each day. When I was awake I was pretty sluggish, so no blogging. Sorry folks for that but I promise I am doing the best I can do.
We are at our apartment, 383 Columbus Drive, Ann Arbor. Home in Holland would be preferable but we need to be close to the hospital for the next 2 months. I had started calling my room at the hospital my "cage". It feels so good to have more room to move. Plus I slept last night for 8 hours! When in the hospital my care was close to ICU, with vitals taken every 2 hours around the clock, blood draws at 4am. Sleep became a series of naps, plus at night I had insomnia quite a bit. I spent plenty of time watching the clock move, minute by minute from 2am to about 5:45 when I would finally drop back to sleep for an hour or more. So you can imagine how good it was to sleep for 8 hours straight.
The visiting nurse came this afternoon and taught Jen, Kate and Den how to infuse me, and how to care for my neostar (port). I am still receiving medicine for the fungal infection in my throat and magnesium as the other meds I am taking keeps my body from absorbing magnesium. The first one will last about 5 more days and the magnesium for quite sometime. When I am not being infused I am free of the IV pole which I am happy for the freedom.
I still need to be very cautious as to what I can be exposed to. We were told that I basically have the immune system of a newborn, so don't go anywhere you wouldn't take a new baby. If you are in the Ann Arbor area we would love to see you, just please make sure you are completely healthy. My diet is not as restricted as we had thought it would be so that was a pleasant surprise.
I cannot tell you enough how fortunate I feel to be home. There were some pretty sick people on my floor. One lady had been in ICU for 6 weeks and then was brought to the BMT unit. I don't know every one's story but my heart went out to many of them. I can't help but believe all of your prayers have made a difference. Please pray for the many who are still there and are still so sick.
I also know I am not out of the woods at this point. Graft vs. Host Disease is the next thing we need to be vigilant about. It can affect my gut, skin or my lungs. We need to contact the Dr. immediately if we see any sign of gvhd. Really this is something I will have to watch for the rest of my life. Presently I take 11 pills in the morning and again at night. Someday it will drop to 2 or so if I stay healthy. It has gone so smoothly I keep wondering when something will happen. I will say the Drs. and nurses kept telling me how well I was doing and attributing it to my otherwise good health. I would say all of you praying for me too!
Thank you for your love and prayers.
Grace and Peace to all, Peggy
We are at our apartment, 383 Columbus Drive, Ann Arbor. Home in Holland would be preferable but we need to be close to the hospital for the next 2 months. I had started calling my room at the hospital my "cage". It feels so good to have more room to move. Plus I slept last night for 8 hours! When in the hospital my care was close to ICU, with vitals taken every 2 hours around the clock, blood draws at 4am. Sleep became a series of naps, plus at night I had insomnia quite a bit. I spent plenty of time watching the clock move, minute by minute from 2am to about 5:45 when I would finally drop back to sleep for an hour or more. So you can imagine how good it was to sleep for 8 hours straight.
The visiting nurse came this afternoon and taught Jen, Kate and Den how to infuse me, and how to care for my neostar (port). I am still receiving medicine for the fungal infection in my throat and magnesium as the other meds I am taking keeps my body from absorbing magnesium. The first one will last about 5 more days and the magnesium for quite sometime. When I am not being infused I am free of the IV pole which I am happy for the freedom.
I still need to be very cautious as to what I can be exposed to. We were told that I basically have the immune system of a newborn, so don't go anywhere you wouldn't take a new baby. If you are in the Ann Arbor area we would love to see you, just please make sure you are completely healthy. My diet is not as restricted as we had thought it would be so that was a pleasant surprise.
I cannot tell you enough how fortunate I feel to be home. There were some pretty sick people on my floor. One lady had been in ICU for 6 weeks and then was brought to the BMT unit. I don't know every one's story but my heart went out to many of them. I can't help but believe all of your prayers have made a difference. Please pray for the many who are still there and are still so sick.
I also know I am not out of the woods at this point. Graft vs. Host Disease is the next thing we need to be vigilant about. It can affect my gut, skin or my lungs. We need to contact the Dr. immediately if we see any sign of gvhd. Really this is something I will have to watch for the rest of my life. Presently I take 11 pills in the morning and again at night. Someday it will drop to 2 or so if I stay healthy. It has gone so smoothly I keep wondering when something will happen. I will say the Drs. and nurses kept telling me how well I was doing and attributing it to my otherwise good health. I would say all of you praying for me too!
Thank you for your love and prayers.
Grace and Peace to all, Peggy
Monday, November 5, 2012
Day + 13
Good Morning....more good news! On Day + 13 my ANC (absolute neutrophil count) is 5.8, White Blood Cells are at 6.9!
These numbers are fabulous. I think when the Drs. round today we may discuss my leaving the hospital. I know I need to be able to swallow pills before I leave. My mouth sores are gone but my throat is raw. Swallowing anything feels like I am swallowing razor blades, yes it is that sore. Prayer for the resolution of this would be greatly appreciated. I am starving, food commercials on TV are tantalizing, unfortunately I am currently limited to applesauce and jello..mmmmm.....not!
It was a great weekend with visits from Jen, Beth and Sarah. It gave Den a much needed break from the routine and monotony of the hospital. He has been at the apartment doing "honey do" things before I come there and join him.
Not much else to report. I was pretty sleepless last night. I am missing fresh air and freedom. I am hoping and praying that this coming weekend I can take a walk in the 60 degree weather. This is the longest I have ever gone without fresh air.
Today is the first day of Competitive Cheer Season! Good Luck to all the coaches and to all the young athletes who are trying out. I hope for all of you a great season.....enjoy! I will be listening and watching from my home. To my fellow officials, enjoy your season! I will be honest, I am jealous of all the fun you have ahead of you. Sitting on the sidelines has never been my strong point but for this season that is where I will be.
I am with you and will watch over you wherever you go.
I will meet all your needs according to My glorious riches.
Nothing in all creation will be able to separate you
from My Love.
Grace and Peace to you this day.
Peggy
These numbers are fabulous. I think when the Drs. round today we may discuss my leaving the hospital. I know I need to be able to swallow pills before I leave. My mouth sores are gone but my throat is raw. Swallowing anything feels like I am swallowing razor blades, yes it is that sore. Prayer for the resolution of this would be greatly appreciated. I am starving, food commercials on TV are tantalizing, unfortunately I am currently limited to applesauce and jello..mmmmm.....not!
It was a great weekend with visits from Jen, Beth and Sarah. It gave Den a much needed break from the routine and monotony of the hospital. He has been at the apartment doing "honey do" things before I come there and join him.
Not much else to report. I was pretty sleepless last night. I am missing fresh air and freedom. I am hoping and praying that this coming weekend I can take a walk in the 60 degree weather. This is the longest I have ever gone without fresh air.
Today is the first day of Competitive Cheer Season! Good Luck to all the coaches and to all the young athletes who are trying out. I hope for all of you a great season.....enjoy! I will be listening and watching from my home. To my fellow officials, enjoy your season! I will be honest, I am jealous of all the fun you have ahead of you. Sitting on the sidelines has never been my strong point but for this season that is where I will be.
I am with you and will watch over you wherever you go.
I will meet all your needs according to My glorious riches.
Nothing in all creation will be able to separate you
from My Love.
Grace and Peace to you this day.
Peggy
Saturday, November 3, 2012
Day +11
An exciting update....Mom's ANC this morning is at a .5 and her white blood cell count is at a 1.3. She's engrafting!!!! Woo Hoo!! We were told that because of her myelofibrosis disease she would probably not follow the "normal" engrafting schedule and that she would be delayed by days. When we got the counts this morning we did a little cheer (imagine that) of celebration.
Mom definitely down plays things and never wants to complain but I would just like to say how strong and tough she is. Last night was really rough, really rough. We were hoping that because her white cells went up yesterday that her mouth/throat/intestinal tract would begin to heal. She developed a lot of mucus and an awful cough that was causing her to choke. At around 1:30 a.m. the doctor ordered a chest x-ray to see what was going on. She couldn't get another steroid dose so really she just has to ride this out and use the "magic mouthwash" today. At around 7 a.m. they gave her morphine through her port and now she is sitting up and she is able to chat a little. They will do everything they can to keep her comfortable but some things you can't avoid.
Please be praying that this is the last day of these mouth sores. They are just awful. Please pray that her ANC stays at a .5 or goes up tomorrow. It's crazy to think that just 11 days after her transplant her donor cells are making a home.
Pray for peace for mom and that she is able to get through this difficult day. We are very hopeful that she will begin to feel better each day at a time.
Thank you for your constant prayers.
B.
Mom definitely down plays things and never wants to complain but I would just like to say how strong and tough she is. Last night was really rough, really rough. We were hoping that because her white cells went up yesterday that her mouth/throat/intestinal tract would begin to heal. She developed a lot of mucus and an awful cough that was causing her to choke. At around 1:30 a.m. the doctor ordered a chest x-ray to see what was going on. She couldn't get another steroid dose so really she just has to ride this out and use the "magic mouthwash" today. At around 7 a.m. they gave her morphine through her port and now she is sitting up and she is able to chat a little. They will do everything they can to keep her comfortable but some things you can't avoid.
Please be praying that this is the last day of these mouth sores. They are just awful. Please pray that her ANC stays at a .5 or goes up tomorrow. It's crazy to think that just 11 days after her transplant her donor cells are making a home.
Pray for peace for mom and that she is able to get through this difficult day. We are very hopeful that she will begin to feel better each day at a time.
Thank you for your constant prayers.
B.
Friday, November 2, 2012
Day + 10
Blessings Back To All Of You!
I can scarcely believe how many people are praying for me! As I layed in my bed this afternoon and thought of all the people who have let me know that they are praying for me and my family, prayer groups who are praying for me, let's just say I was completely overwhelmed. To be honest I do not feel worthy of all the support and encouragement but I will take it all. I keep asking myself why this is going as well as can be expected, I envision this army of prayer warriors. So thank you again.
I should be through the side effects of the chemo in a few more days. My mouth/throat/ear canal are inflamed and covered with sores. I have had the maximum steroids for the swelling and inflammation. I may have to tough it out for a few days. My white cells did creep up as my morning labs confirmed and once I am no longer neutropenic all the internal blistering should resolve. I have not lost my hair yet but had quite a handful when I washed it this morning so that should be coming soon. Don't worry, I have a really cute wig, cuter and more manageable than my own hair! At 30 days I will have my first bone marrow biopsy post transplant which will measure her stem cells vs. mine. Dr. Magineau told me he will view with confidence my 100 day post transplant bone marrow biopsy to say if I have successfully engrafted with her stem cells. Then we will REALLY know I have had a successful transplant. He seems to be confident that I am passing through a best case scenario but you know me, when I can see the results then I will believe it. Just another one of my "little" anxieties!
The fact that I am not exhausted from typing 2 paragraphs attest to the fact each day seems to be better. When I saw the typos from my last post, oh my! Please know that took every ounce of energy I had.
You have taught me so much in how to express yourself as a godly friend. I am so touched at so many ways you have shown me how to be an encourager. The cards, emails, fb message, photo album of the Swabbing Event, phone calls, on and on........ It challenges me to be a better friend in the future. Today's devotional tells me that my weakness does not repel my Heavenly Father, a fact that comforts me greatly. I have always had a dance with prayer, It has always been a struggle for me to pray for something I want. If God is sovereign which he is, who am to ask him for something specific? And here I am, begging you to pray for me, knowing that it is making a difference. Let's just say God has me on a learning curve that I obviously needed.
Grace and Peace, Peggy
I can scarcely believe how many people are praying for me! As I layed in my bed this afternoon and thought of all the people who have let me know that they are praying for me and my family, prayer groups who are praying for me, let's just say I was completely overwhelmed. To be honest I do not feel worthy of all the support and encouragement but I will take it all. I keep asking myself why this is going as well as can be expected, I envision this army of prayer warriors. So thank you again.
I should be through the side effects of the chemo in a few more days. My mouth/throat/ear canal are inflamed and covered with sores. I have had the maximum steroids for the swelling and inflammation. I may have to tough it out for a few days. My white cells did creep up as my morning labs confirmed and once I am no longer neutropenic all the internal blistering should resolve. I have not lost my hair yet but had quite a handful when I washed it this morning so that should be coming soon. Don't worry, I have a really cute wig, cuter and more manageable than my own hair! At 30 days I will have my first bone marrow biopsy post transplant which will measure her stem cells vs. mine. Dr. Magineau told me he will view with confidence my 100 day post transplant bone marrow biopsy to say if I have successfully engrafted with her stem cells. Then we will REALLY know I have had a successful transplant. He seems to be confident that I am passing through a best case scenario but you know me, when I can see the results then I will believe it. Just another one of my "little" anxieties!
The fact that I am not exhausted from typing 2 paragraphs attest to the fact each day seems to be better. When I saw the typos from my last post, oh my! Please know that took every ounce of energy I had.
You have taught me so much in how to express yourself as a godly friend. I am so touched at so many ways you have shown me how to be an encourager. The cards, emails, fb message, photo album of the Swabbing Event, phone calls, on and on........ It challenges me to be a better friend in the future. Today's devotional tells me that my weakness does not repel my Heavenly Father, a fact that comforts me greatly. I have always had a dance with prayer, It has always been a struggle for me to pray for something I want. If God is sovereign which he is, who am to ask him for something specific? And here I am, begging you to pray for me, knowing that it is making a difference. Let's just say God has me on a learning curve that I obviously needed.
Grace and Peace, Peggy
Subscribe to:
Posts (Atom)