This past week has been spent in a bit of a drug-induced haze. The mucositis hit me hard, and I am still using a pain pump to help control things and enable me to eat. I haven't gained any weight, but I haven't lost any, either, which is a good thing.
Dr. DiPersio (head of the transplant unit) has been making rounds while Dr. Westervelt has been on break. He seems very optimistic and I expect to be released later this week to the previously mentioned cancer housing. I would love to just go home but I will most likely have about three appointments per week for a while and the drive is about 120 miles one way, so I know it will be easiest to stay in the area.
My days have been quiet and have taken on their own routine. My counts are beginning to rise (praise the Lord!) so hopefully the mouth issues will clear shortly. Right now I am still spending most of my time trying to get food down. (Regarding counts, my WBC is at 1000 today and the neutrophils are at 600.) I am receiving Neupogen shots again to help boost the numbers. Definitely weary of those!
Gary will be one year old on Wednesday. I'll be able to see him briefly this evening, and can hardly wait. I want so badly to be home with him. I am feeling a lot stronger this time, and things like working out on the treadmill are helping with endurance, so I may actually be able to take care of most of his needs once I get home. I'm excited about that. I have been so grateful for all the childcare my family (especially sisters) have provided, but I miss being mommy.
I pray you were all able to enjoy a blessed Thanksgiving holiday with your families. I have been able to enjoy a four day weekend with my husband and have more to be thankful for this year than I could ever begin to list. Mostly I am thankful for life, and for each moment I have been given as a gift. We love you all. Thank you for your prayers, and may the Lord richly bless you all.
Sunday, November 26, 2006
Sunday, November 19, 2006
Day Six Update
Sorry for the delay in updating my blog. Overall it has been a good week. The Dr. has been pleased with my progress so far though I am still dealing with a very sore throat and the mucositis. The mucositis is a side effect of a drug that I finished today, so hopefully that should start improving over the next few days.
I've been spending time daily either walking the halls or using the treadmill in the exercise room. My neutrophil count hasn't hit its lowest point yet, so the next few days may still be hard until my counts begin to rise again. My days have been filled mostly with trying to eat as much as possible, a slow, painful process, and just sleeping.
If all continues to progress well I should be released from the hospital to the housing provided by the American Cancer Society by the end of the month or so. The doctors will want me to stay within the St. Louis area for about the first 100 days, though they did say they will transfer me back to my doctors at Ellis Fischel as soon as possible.
There is still a lot that time will tell. For now, we continually thank you for your prayers on our behalf. I have received far too many cards to list, but do want to thank the Wassons and PHCers for blessing us. Also to Emily for the very cool pink fuzzy hat. It's all the rage. :-)
I've been spending time daily either walking the halls or using the treadmill in the exercise room. My neutrophil count hasn't hit its lowest point yet, so the next few days may still be hard until my counts begin to rise again. My days have been filled mostly with trying to eat as much as possible, a slow, painful process, and just sleeping.
If all continues to progress well I should be released from the hospital to the housing provided by the American Cancer Society by the end of the month or so. The doctors will want me to stay within the St. Louis area for about the first 100 days, though they did say they will transfer me back to my doctors at Ellis Fischel as soon as possible.
There is still a lot that time will tell. For now, we continually thank you for your prayers on our behalf. I have received far too many cards to list, but do want to thank the Wassons and PHCers for blessing us. Also to Emily for the very cool pink fuzzy hat. It's all the rage. :-)
Monday, November 13, 2006
Transplant
After a restless night of sleep and possibly an even more restless day of sleep, I finally remembered that this transplant meant a chance to live -- I really had nothing to lose -- lightened up and enjoyed what took all of about 20 minutes to complete. My wonderful brother needed to provide 2 million stem cells and we found out tonight he provided 9 million. They can use about 8 million to help me bounce back a little faster, the rest will be frozen. I am so thankful for all he went through for me today. He was hooked up to the pheresis machine for about 5 hours, so I definitely had the easy day.
Now begins the waiting game. My counts are at zero and I've lost weight again due to the mouth issues. Dr. Westervelt said I won't feel good for a while but they will do all they can to treat the symptoms. I've been taking advantage of the hospital's good fruit smoothies. I'm allowed fresh fruit and veggies here even though neutropenic since the food staff is trained to work with us. Everyone here has been so wonderful. I have been much encouraged.
I found the first chapter of James to be very comforting just prior to transplant, along with yesterday morning's "Morning & Evening" by Spurgeon.
I apologize that this seems so scattered. Thank you for your prayers.
Now begins the waiting game. My counts are at zero and I've lost weight again due to the mouth issues. Dr. Westervelt said I won't feel good for a while but they will do all they can to treat the symptoms. I've been taking advantage of the hospital's good fruit smoothies. I'm allowed fresh fruit and veggies here even though neutropenic since the food staff is trained to work with us. Everyone here has been so wonderful. I have been much encouraged.
I found the first chapter of James to be very comforting just prior to transplant, along with yesterday morning's "Morning & Evening" by Spurgeon.
I apologize that this seems so scattered. Thank you for your prayers.
Saturday, November 11, 2006
T minus 2 and Counting
This is Amy's mom helping her post tonight. She wanted you to know how things were going. Radiation and chemo both went fairly well for her. She does have one side effect from the chemo. Her mouth has gotten pretty sore, no mouth ulcers but more of a break down of the lining in her mouth and throat. She is able to take pain medication before she eats to try to make that easier for her. Amy orders food that is soft and easy to swallow right now. She is enjoying the smoothies that they make here. At last weight check Amy has gained weight and this is certainly a praise. She has had some fever today. It is not high but she asks that you continue to remember her in this area. She would also like to experience a good night of sleep. They have had to give her lots of fluid post chemotherapy to keep the drug from becoming toxic in her kidneys. And we all know what lots of water does to us! We try to walk a couple of laps around the halls as she feels able to do so. With her mask on, we feel fairly safe walking on 5900. Her blood counts from yesterday show that she is neutropenic now. We need to be careful that she is not knowingly exposed to illnesses. She is grateful to the Lord for all the help He has given to her.
Amy's brother Daniel is doing a great job getting his growth factor shots - Neupogen. We commented to the nurse today that we hope they only increase his bone marrow production and not his height. Daniel is about 6 foot 4 inches tall at 17 years old. He has not had any noticeable side effects from the shots. He will receive one more shot tomorrow morning and then the pheresis will occur on Monday, November 13 beginning around 8 a.m., Lord willing. The collection should take approximately 5 hours. The collection of stem cells will be counted. They need around 2.5 million cells to transplant to Amy. It will also undergo other lab tests and then it will be transplanted into her sometime Monday evening. If the count of stem cells is not high enough Daniel will need to return on Tuesday to give more. It is truly amazing what God has allowed us to understand so that many people with blood cancers and other blood disorders can be helped. I have met other family members here on the floor and so many of them have good reports about their loved ones. That is good for me to hear.
Amy is so thankful to those who have sent cards to her and have contacted her in other ways. Thanks also to the Rodriguez, Quinones, and Ymker families for their gifts. She also wants to thank her family for all the help they have given to her -- to Aunt Linda and Uncle Ron for helping Daniel get to his appointments and letting him stay at their house during these days, to Emma, Christianne, and Lizzy for helping with Gary, and to Daddy for letting Mom spend so much time with her. She loves you all. Thanks to you all for your continued prayers for Amy and Daniel. We will keep you posted.
Until later,
Anita, Amy's mom
Amy's brother Daniel is doing a great job getting his growth factor shots - Neupogen. We commented to the nurse today that we hope they only increase his bone marrow production and not his height. Daniel is about 6 foot 4 inches tall at 17 years old. He has not had any noticeable side effects from the shots. He will receive one more shot tomorrow morning and then the pheresis will occur on Monday, November 13 beginning around 8 a.m., Lord willing. The collection should take approximately 5 hours. The collection of stem cells will be counted. They need around 2.5 million cells to transplant to Amy. It will also undergo other lab tests and then it will be transplanted into her sometime Monday evening. If the count of stem cells is not high enough Daniel will need to return on Tuesday to give more. It is truly amazing what God has allowed us to understand so that many people with blood cancers and other blood disorders can be helped. I have met other family members here on the floor and so many of them have good reports about their loved ones. That is good for me to hear.
Amy is so thankful to those who have sent cards to her and have contacted her in other ways. Thanks also to the Rodriguez, Quinones, and Ymker families for their gifts. She also wants to thank her family for all the help they have given to her -- to Aunt Linda and Uncle Ron for helping Daniel get to his appointments and letting him stay at their house during these days, to Emma, Christianne, and Lizzy for helping with Gary, and to Daddy for letting Mom spend so much time with her. She loves you all. Thanks to you all for your continued prayers for Amy and Daniel. We will keep you posted.
Until later,
Anita, Amy's mom
Wednesday, November 08, 2006
T minus 5 and counting
I just finished my last round of radiation. I haven't had any side effects so far other than maybe a bit of a tan, so praise God. I'm very, very grateful that I haven't been so sick and have been able to eat. My main complaint at the moment is a pulled muscle in my side. A visit to the chiropractor indicated a rib out of place in my back, but he said the muscle was pulled in front and that would just take time to heal. Thankfully I have access to pain killers and muscle relaxers.
I'll start chemo tomorrow. Two days of two hour long treatments. The drug is Cytoxin. I haven't looked it up but I think it has the potential to be pretty nasty so I would appreciate continued prayers that side effects would be mild.
Thank you all for your love and support. Just in case you didn't notice, I did put my Barnes address on the sidebar. It's quite lengthy, but that should get a note here if you were wanting to send one.
Oh, oh, and one more praise. I have a room with a view! After spending 5 weeks approx. at MU staring at a brick wall, this was an answer to prayer, so I wanted to be sure to share it with you. (The praise...sorry I can't a pic at the moment.) I brought in pictures and stuff from home, and my room is quite comfortable. So far being here has been a great experience. Wish I could have brought my favorite nurses from MU along, though. :-)
Blessings,
Amy
I'll start chemo tomorrow. Two days of two hour long treatments. The drug is Cytoxin. I haven't looked it up but I think it has the potential to be pretty nasty so I would appreciate continued prayers that side effects would be mild.
Thank you all for your love and support. Just in case you didn't notice, I did put my Barnes address on the sidebar. It's quite lengthy, but that should get a note here if you were wanting to send one.
Oh, oh, and one more praise. I have a room with a view! After spending 5 weeks approx. at MU staring at a brick wall, this was an answer to prayer, so I wanted to be sure to share it with you. (The praise...sorry I can't a pic at the moment.) I brought in pictures and stuff from home, and my room is quite comfortable. So far being here has been a great experience. Wish I could have brought my favorite nurses from MU along, though. :-)
Blessings,
Amy
Monday, November 06, 2006
T minus 7 and counting...
My radiation was bumped up a day, so I'm actually 1/3 of the way through the process. I'll have two more treatments tomorrow, and then again on Wednesday. Thursday and Friday will be chemo, the weekend will be rest, and then I'll have my transplant, or "Day Zero" as they call it, on Monday, Lord willing. Today went much better than I expected. Radiation took about 15 minutes on each side, and I was able to listen to music so it was relatively comfortable. The positioning made my back hurt -- that's my only complaint. So far the anti-nausea drugs have been doing their job, which is a huge praise because I was really sick over the weekend and dropped all the weight I had put on so far. I was able to go home on Thursday evening, but began running fevers and feeling really sick by Friday evening and ended up back in the hospital last night (Sunday). Right now I'm feeling o.k. Much more at peace about everything than I had been in quite a while. I have access to an exercise room and the halls are kept relatively free of people so I plan to do a lot more walking and exercising this time to help regain some strength. At least for now while I'm able.
Thank you all so much for your prayers. Please pray especially for my husband. It's hard for him to be far away and unable to see me except on the weekends for the most part. Also, for my family as they once again share my mom. She's spending this week here at the hospital with me. I am very grateful for all of the sacrifices they have made on my behalf. Also, for my brother Daniel. He'll begin the Neupogen shots on Thursday.
I'll leave this rather short as I have to be up early for radiation in the morning. I know I've lost track over the past week or so as I've been ill with the high fevers, but thanks to those who sent notes of encouragement and even flowers. You're all such a blessing.
Oh, one last thing. Now that I have started the transplant process I am unable to receive flowers, plants, etc. I think silk are o.k. but I'm not 100% sure on that. My room is super clean with HEPA filters and they take a ton of precautions. We are also asking that people refrain from visiting from this point on. If you'd like to stop by and talk with my mom or Brandon, arrangements can be made to do so, but I won't be able to have visitors in my room. We love you all, but the ultimate goal is to make it through this, and something like the flu or pneumonia at this point could prove deadly. I know you all understand, and thank you.
Many blessings, Amy
Thank you all so much for your prayers. Please pray especially for my husband. It's hard for him to be far away and unable to see me except on the weekends for the most part. Also, for my family as they once again share my mom. She's spending this week here at the hospital with me. I am very grateful for all of the sacrifices they have made on my behalf. Also, for my brother Daniel. He'll begin the Neupogen shots on Thursday.
I'll leave this rather short as I have to be up early for radiation in the morning. I know I've lost track over the past week or so as I've been ill with the high fevers, but thanks to those who sent notes of encouragement and even flowers. You're all such a blessing.
Oh, one last thing. Now that I have started the transplant process I am unable to receive flowers, plants, etc. I think silk are o.k. but I'm not 100% sure on that. My room is super clean with HEPA filters and they take a ton of precautions. We are also asking that people refrain from visiting from this point on. If you'd like to stop by and talk with my mom or Brandon, arrangements can be made to do so, but I won't be able to have visitors in my room. We love you all, but the ultimate goal is to make it through this, and something like the flu or pneumonia at this point could prove deadly. I know you all understand, and thank you.
Many blessings, Amy
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