Day 6 in the hospital. Hoping to go home tomorrow. The doctors are concerned about my oxygen level. It is too low. This morning blood pressure and oxygen was too low and I have headaches, shortness of breath, and leg cramps. Just did not feel good! They still say it is not the heart. I hope so.
Don't have much to say except please pray. I need those prayers.
Love,
Debbie
Tuesday, November 27, 2012
Monday, November 26, 2012
Time in the Hospital
I have been in the hospital since Friday. I was in so much pain and finally went to see the doctor. She took xrays and said I have pneumonia. The pain has been so bad my oxygen level is down in the 80's. I hope I will be going home today. I have to do xrays this morning and hopefully it shows I'm improving. They did a CT scan on Saturday night because they thought I had a blood clot. Everything was negative. They also did the blood test for enzymes to see if I had a heart attack. That was negative and my EKG was perfect. So the heart is ruled out and all they can say is I have a bad case of pneumonia. My job these days is to take care of this body and that will be my goal for the next few weeks.
Thank you to all who have sent me prayers and special thoughts. Thank you to my husband, sister Mary and Nancie my neighbor. They have done so many things to help me while I have been here. Nancie is an RN and she really made sure I was comfortable. She even stay all day Saturday until the doctor came in and asked the important questions. I appreciated that so much.
I hope everyone had a wonderful Thanksgiving. It was my birthday and we spent it at Joey and Rachel's house. They did a beautiful dinner and every moment was the best! I am so thankful to have such a loving family!
I will keep you informed when I will be getting out of the hospital.
Enjoy every moment!
Love,
Debbie
Thank you to all who have sent me prayers and special thoughts. Thank you to my husband, sister Mary and Nancie my neighbor. They have done so many things to help me while I have been here. Nancie is an RN and she really made sure I was comfortable. She even stay all day Saturday until the doctor came in and asked the important questions. I appreciated that so much.
I hope everyone had a wonderful Thanksgiving. It was my birthday and we spent it at Joey and Rachel's house. They did a beautiful dinner and every moment was the best! I am so thankful to have such a loving family!
I will keep you informed when I will be getting out of the hospital.
Enjoy every moment!
Love,
Debbie
Tuesday, November 20, 2012
Happy Thanksgiving
Happy Thanksgiving to all! May your day be blessed with family and friends. Be thankful, be happy and above all MAKE EVERY MOMENT COUNT!!!
Just got back from Pittsburgh yesterday. To be honest did not feel well the whole time there. I was on the stronger dose of Cytoxan and it made me really sick. I spent most of the time in the hotel in bed. I didn't go to the game on Sunday with Mark and Jeff. Just too sick!!! Then the worst of it was the flight home yesterday. United changed our flight from a non stop to a lay over in Houston. So instead of a 4 hour or so flight, it was over 7 hours for both flights. I was exhausted yesterday.
I have been having trouble with my neck since having the heart bio in September. The doctors think they hit a nerve. So I have constant pain on my right side of my neck. I remember a point during the bio when the doctor was pulling out the sample my entire body jerked and came off the table. It didn't hurt but it definitely was a nerve that was hit. So now they are trying to decide whether to put me on antiflamatory medication (more steroids). This is such a pain in the A_ _. I wish I could feel the way I did over a year ago but unfortunately I have been going down ever since last September. Yes my heart is strong and I'm surviving a rare fatal disease but I don't feel like my quality of life is what it should be. I'm blessed and thankful for every day and enjoy every moment I have.
We are having Thanksgiving at brother Joey and Rachel's house. I'm so excited. I decided not to take Decadron this week because again I would be sick. I want to enjoy Thanksgiving and my birthday which is on Thanksgiving! We made 16 bags or 42 cups of home made gnocchi. I think we will have enough.
Lots happening the next month. Hailey turns 1 on December 8th. I have to start making my gingerbread houses for my grandkids and my donor sisters. Evelyn and the girls are coming to the trailer and we are going to have a weekend together (girls only) decorating their gingerbread houses. My little house here is just too small and I thought it would be fun to spend the weekend with Evelyn and the girls.
Have a Happy Thanksgiving!
Love,
Debbie
Just got back from Pittsburgh yesterday. To be honest did not feel well the whole time there. I was on the stronger dose of Cytoxan and it made me really sick. I spent most of the time in the hotel in bed. I didn't go to the game on Sunday with Mark and Jeff. Just too sick!!! Then the worst of it was the flight home yesterday. United changed our flight from a non stop to a lay over in Houston. So instead of a 4 hour or so flight, it was over 7 hours for both flights. I was exhausted yesterday.
I have been having trouble with my neck since having the heart bio in September. The doctors think they hit a nerve. So I have constant pain on my right side of my neck. I remember a point during the bio when the doctor was pulling out the sample my entire body jerked and came off the table. It didn't hurt but it definitely was a nerve that was hit. So now they are trying to decide whether to put me on antiflamatory medication (more steroids). This is such a pain in the A_ _. I wish I could feel the way I did over a year ago but unfortunately I have been going down ever since last September. Yes my heart is strong and I'm surviving a rare fatal disease but I don't feel like my quality of life is what it should be. I'm blessed and thankful for every day and enjoy every moment I have.
We are having Thanksgiving at brother Joey and Rachel's house. I'm so excited. I decided not to take Decadron this week because again I would be sick. I want to enjoy Thanksgiving and my birthday which is on Thanksgiving! We made 16 bags or 42 cups of home made gnocchi. I think we will have enough.
Lots happening the next month. Hailey turns 1 on December 8th. I have to start making my gingerbread houses for my grandkids and my donor sisters. Evelyn and the girls are coming to the trailer and we are going to have a weekend together (girls only) decorating their gingerbread houses. My little house here is just too small and I thought it would be fun to spend the weekend with Evelyn and the girls.
Have a Happy Thanksgiving!
Love,
Debbie
Tuesday, November 6, 2012
I'm Sick!!!
Took chemo today and Decadron. Now I'm sick!!!! I hate Decadron!!! I'm excited about no Decadron next week only Cytoxan and Velcade. I'm off to Pittsburg to see my Steelers beat the Ravens! Can't wait to go!!!!
Enjoy every moment!
Love,
Debbie
Sorry too sick to write more.
Enjoy every moment!
Love,
Debbie
Sorry too sick to write more.
Thursday, November 1, 2012
Off Decadron
They are the reason I keep fighting!!!
I am so blessed to have a loving and supportive family and friends. Life is good!!!
LIFE: Make time to enjoy the simple things in life. Spend time with family. Forgive even when it is hard.
Love,
Debbie
Thursday, October 25, 2012
Visit to Stanford
Well the boxing gloves came out between me and Dr. Schrier. As always before he comes to visit I meet with a fellow (medical student doctor). He quickly asked me if I had any problems and quickly stated that Dr. Schrier was aware that I hate Decadron. I told him the side effects and felt my quality of life was poor. I'm so depressed, sick, sore and really tired 5 days out of 7. I'm really starting to stress about taking Decadron for so long. I fell again last week and know that sooner than later the next time will be serious.
So he took his little notes and left us for about 20 minutes.
The door swings open and quickly Dr. Schrier says "ok, I'm increasing Cytoxan to 300mg and I'm giving you a break from Decadron every other week but you will still be on Velcade every week". Wow Mom and I just looked at each other and smiled. I was just asking for one week off Decadron (don't tell him that) but every other week is GREAT! Now next week will tell. I have never been off Decadron and still taking Velcade. So which drug causes the side effects. I really and have always thought it was the Decadron but next week will tell. I hope and pray now that it is and not the Velcade. When I had my stem cell transplant in 2009, they gave me Decadron and not Velcade and I had the same side effects. Please Please be the Decadron!!!!
Dr. Schrier is concerned about blood counts, kidney function and bladder function increasing my dosage of Cytoxan to 300mg. He is monitoring it weekly before each chemo treatment. My numbers are low 70 and he is happy about that. No new occurrence of Amyloid in the heart. This was big news to him. He was very happy about that and felt the Cytoxan is working to protect the heart. I had a multitude of tests on the heart for the last few weeks. Every thing has been perfect!! I'm so blessed to have been given this second chance at life to receive a beautiful gift like this.
Looking forward to my trip to Pittsburgh next month. A little disappointed that we can't see a hockey game but we will have so much fun. Our good friend Jeff is coming with us. He just loss his girlfriend this year and needs to have some time away. It will be so fun!
I have this beautiful quote hanging from my wall next to my bed. It is about LIFE. Smile often. Be grateful. Be the change you wish to see in the world. Try new things. Work hard. Don't count the minutes count the laughs and above all... make every moment count.
Love,
Debbie
So he took his little notes and left us for about 20 minutes.
The door swings open and quickly Dr. Schrier says "ok, I'm increasing Cytoxan to 300mg and I'm giving you a break from Decadron every other week but you will still be on Velcade every week". Wow Mom and I just looked at each other and smiled. I was just asking for one week off Decadron (don't tell him that) but every other week is GREAT! Now next week will tell. I have never been off Decadron and still taking Velcade. So which drug causes the side effects. I really and have always thought it was the Decadron but next week will tell. I hope and pray now that it is and not the Velcade. When I had my stem cell transplant in 2009, they gave me Decadron and not Velcade and I had the same side effects. Please Please be the Decadron!!!!
Dr. Schrier is concerned about blood counts, kidney function and bladder function increasing my dosage of Cytoxan to 300mg. He is monitoring it weekly before each chemo treatment. My numbers are low 70 and he is happy about that. No new occurrence of Amyloid in the heart. This was big news to him. He was very happy about that and felt the Cytoxan is working to protect the heart. I had a multitude of tests on the heart for the last few weeks. Every thing has been perfect!! I'm so blessed to have been given this second chance at life to receive a beautiful gift like this.
Looking forward to my trip to Pittsburgh next month. A little disappointed that we can't see a hockey game but we will have so much fun. Our good friend Jeff is coming with us. He just loss his girlfriend this year and needs to have some time away. It will be so fun!
I have this beautiful quote hanging from my wall next to my bed. It is about LIFE. Smile often. Be grateful. Be the change you wish to see in the world. Try new things. Work hard. Don't count the minutes count the laughs and above all... make every moment count.
Love,
Debbie
Friday, October 19, 2012
LIFE!!
LIFE! Believe in magic. Tell stories. Love with all your heart. Never give up. Do what you love. Follow your dreams. Be happy. Live today. And above all... make every moment count.
These are words I try to live by each and every day. Sometimes it is very very hard. I keep fighting because I have so much to live for. My wonderful husband, Mark, my three sons, grand kids, family and friends. I have so much more to see and do in this life and I'm not ready to go!
These are words I try to live by each and every day. Sometimes it is very very hard. I keep fighting because I have so much to live for. My wonderful husband, Mark, my three sons, grand kids, family and friends. I have so much more to see and do in this life and I'm not ready to go!
I want to laugh again till my belly hurts!!!!
Everyday it is a struggle to maintain my health, emotions and mental state. This week was especially hard because I was on both chemo drugs at the same time. Usually for the past 3 months I would take Cytoxan after getting Velcade. This month they landed on the same day. So I was so sick this week. To make things worst I fell again! Now my left foot (which I fractured months ago) and ankle are swollen and sore. Not to say again about the huge cut on my right leg which will turn black and blue soon. This sucks! I know I am at risk of broken bones because of the steroid but here we go again.
I received my light chain count results yesterday. Last month down to 61 and this month up to 70. I know its only 9 points up but I was hoping for a big drop before seeing Dr. Schrier next week. I really want a break and I need it! I'm not asking to stop chemo (either one) I just want to stop Dex for one week a month. As I have said before so many times, that steroid is awful and has so many side effects. I just need a break. So Tuesday hopefully he will give me a break from Dex. I lowered my dose from 40mg to 20mg and that has done nothing, so I think one week a month will help. I want to be a person again. Being sick from Tuesday till Saturday is not the way to live life. It is holding me back from doing the things I want to do. LIVE LIFE!
Keep sending those prayers for Auntie Mary Joan, me and all the others in the world fighting for LIFE!
Love,
Debbie
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