Denise,
Hoping and praying that you are on the recovery side and each day will be a bit better. One thing to remember is to listen to your body ... nap when you can, because it will renew your strength. You cannot continue to wear the "Superwoman" crown while you are undergoing treatment.. The struggle you are in today will give you the strength you need for tomorrow.
Your WMS family is praying for you!
Rose Panto
Forums
Re: My autologous stem cell transplant at Jefferson
I am and always will be inspired by your strength and positive attitude! I hope that I inherited just a little bit of your strength, and also hope the same for my children. Always in my thoughts, mom!
Love Kate
Love Kate
Re: My autologous stem cell transplant at Jefferson
Hello Denise,
I was really glad to see your postings from earlier this week. Thank you for the updates. I know you've been through a tough time, but it looks like the worst is behind you. Still, lots of us here are thinking of you and wishing you a speedy recovery, followed by a long, LONG period of good health!
I was really glad to see your postings from earlier this week. Thank you for the updates. I know you've been through a tough time, but it looks like the worst is behind you. Still, lots of us here are thinking of you and wishing you a speedy recovery, followed by a long, LONG period of good health!
Re: My autologous stem cell transplant at Jefferson
Hello, My Friend,
God is love. Always keep that in mind. YOU are an amazing woman and I cherish our friendship. Stay strong as you always do. You are doing well and things are looking brighter each day. You are missed each and every day here at work, but we all know we are in your thoughts and you in ours. Take care of you.
Love,
Pat
God is love. Always keep that in mind. YOU are an amazing woman and I cherish our friendship. Stay strong as you always do. You are doing well and things are looking brighter each day. You are missed each and every day here at work, but we all know we are in your thoughts and you in ours. Take care of you.
Love,
Pat
Re: My autologous stem cell transplant at Jefferson
Denise,
Hoping you continue to do better every day. I have been following your posts as my husband is going to have to do an SCT in a few months. Your posts have really helped me prepare for what is coming.
Sending prayers your way.
-Chris
Hoping you continue to do better every day. I have been following your posts as my husband is going to have to do an SCT in a few months. Your posts have really helped me prepare for what is coming.
Sending prayers your way.
-Chris
-
Blue58 - Name: Blue58
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 57
Re: My autologous stem cell transplant at Jefferson
Hi Denise,
I thought I would post a short note to wish you well and let you know that a lot of us here are thinking of you. I hope you're slowly regaining your strength and feeling better.
Good luck!
I thought I would post a short note to wish you well and let you know that a lot of us here are thinking of you. I hope you're slowly regaining your strength and feeling better.
Good luck!
Re: My autologous stem cell transplant at Jefferson
Hi Denise!
I hope that all is going well for you!!! I'm looking forward to your next "installment"!
I just wanted to let you know that I appreciate the time and energy you have put into documenting your experience. I am going to be having my SCT in a couple of months or so and have found this thread invaluable! I meet with the transplant doctor on June 22 and will have a better idea of the when.
Keep up the good work and I wish you a speedy recovery!
Love and Blessings!
Clair
I hope that all is going well for you!!! I'm looking forward to your next "installment"!
I just wanted to let you know that I appreciate the time and energy you have put into documenting your experience. I am going to be having my SCT in a couple of months or so and have found this thread invaluable! I meet with the transplant doctor on June 22 and will have a better idea of the when.
Keep up the good work and I wish you a speedy recovery!
Love and Blessings!
Clair
-
ClairB - Name: Clair B
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 12, 2015
- Age at diagnosis: 53
Re: My autologous stem cell transplant at Jefferson
Day 21
Dearest friends,
As in triple looper roller coasters, my stem cell transplant has taken me places never expected, but being dealt with on a daily basis by my incredible care team. Some of these loops have my doctors wondering what happened, and so numerous tests (at all hours of the night, btw) have been done to make sure that my bilirubin levels continue to decrease. For a while they just kept rising. I know that one day does not make a trend, but at this point, I'll take that decrease now.
I always knew how serious and life-changing a procedure the transplant could be, but in my heart and soul, I knew it was my best shot at the longest and deepest remission for me. But, serious and life-changing develops meaning when your day-to-day activities that we all take for granted become challenges – brushing teeth, tasting food, keeping the nutrition in my body long enough to help. Sadness overwhelmed me when dealing with the all-present GI issues,
This is not a complaint, but a reminder to me that the journey starts within, and has many hands holding me up to cross each hurdle. Each of your posts that you share with me are lifelong treasures of a battle well fought.
No commitments on my new release date, but they did hint toward the end of the weekend. We will see what tomorrow's blood cultures will bring. Pray for my bilirubin to continue to trend down, and the support of my wonderful care team,
Denise
Dearest friends,
As in triple looper roller coasters, my stem cell transplant has taken me places never expected, but being dealt with on a daily basis by my incredible care team. Some of these loops have my doctors wondering what happened, and so numerous tests (at all hours of the night, btw) have been done to make sure that my bilirubin levels continue to decrease. For a while they just kept rising. I know that one day does not make a trend, but at this point, I'll take that decrease now.
I always knew how serious and life-changing a procedure the transplant could be, but in my heart and soul, I knew it was my best shot at the longest and deepest remission for me. But, serious and life-changing develops meaning when your day-to-day activities that we all take for granted become challenges – brushing teeth, tasting food, keeping the nutrition in my body long enough to help. Sadness overwhelmed me when dealing with the all-present GI issues,
This is not a complaint, but a reminder to me that the journey starts within, and has many hands holding me up to cross each hurdle. Each of your posts that you share with me are lifelong treasures of a battle well fought.
No commitments on my new release date, but they did hint toward the end of the weekend. We will see what tomorrow's blood cultures will bring. Pray for my bilirubin to continue to trend down, and the support of my wonderful care team,
Denise
-
computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: My autologous stem cell transplant at Jefferson
Denise,
You are an amazing woman and so brave. I am praying for you daily and hoping the weekend proves to be a good one for you. Keep the faith, my friend. You will beat all of this with God's help and our prayers.
Take care of you.
Pat
You are an amazing woman and so brave. I am praying for you daily and hoping the weekend proves to be a good one for you. Keep the faith, my friend. You will beat all of this with God's help and our prayers.
Take care of you.
Pat
Re: My autologous stem cell transplant at Jefferson
Finally home on the last day in May!
Dear Friends,
I am so appreciative of everyone's support during my roller coaster of a stem cell transplant. My last day at Jefferson was on May 31, when at 10:00 a.m. I learned that I had finally been released to go home. Because of all the ups and downs, I did not even want to call my children until transport had actually taken me to the parking lot, we got into the car, crossed the bridge, parked the car, and I shuffled into my recliner!
Things I learned:
My sister stayed with me for the week after my release, and helped me organize my meds. I am only taking Valtrex (valacyclovir) right now. In the hospital, I received Dapsone (diaminodiphenyl sulfone, DDS) through an inhaler, which is good until June 26. At that time, I will start using oral medication. My sister also helped me with my daily needs during the first week I got back. We sent her home, back to her husband, who missed her dearly, on Tuesday. My husband is only 5 minutes away, so, right now, I am doing my own thing, my "theraband" exercises, walking around the house, sitting outside for very brief periods of time (in the shade), and resting.
The day after my release, June 1, I headed back to Philly for a follow up with my doctor. He spent a lot of time reviewing my records and meds. I will return to him next week. I have started a list of questions. So, if anyone has any suggestions on questions to ask, I am all ears. Some things on my list include when I can visit a podiatrist, an E.N.T. (ear, nose throat) doctor, dentist, dermatologist, and what - if any - are the parameters of anything they may treat me for.
(I noticed that I have a small "toenail" fungus spot on my big toenail .... hence, podiatrist.)
I am so grateful to be home and getting better each day. I would be happy to answer any questions about the day-to-day details. I do recognize, more than ever, the individual nature of both the disease of multiple myeloma and the stem cell transplant process. I hope that my experiences with the two setbacks that extended my stay can be used as just something that MAY happen, not that it WILL happen.
Thank you so much for your continued support.
Dear Friends,
I am so appreciative of everyone's support during my roller coaster of a stem cell transplant. My last day at Jefferson was on May 31, when at 10:00 a.m. I learned that I had finally been released to go home. Because of all the ups and downs, I did not even want to call my children until transport had actually taken me to the parking lot, we got into the car, crossed the bridge, parked the car, and I shuffled into my recliner!
Things I learned:
- Recovery is measured individually and daily in small increments that can usually only be seen in the rear view mirror.
- Doctors don't have answers to everything that comes up. In spite of their brilliance, there are some things that come up that are unexpected and unexplainable. The best that can happen is to try things that will help move the patient towards recovery and support the body's healing processing during that time.
- The most painful part of removing the PICC line is removing the adhesive plastic patch that seems to be super-glued to your skin.
Interventional radiology people rock. - It is hard to become an "invisible person" in a wheelchair waiting for transportation to take you back to your room. Picture yourself in a wheelchair, locked for movement, with a mask on, connected to an IV, with a mouth dryer than the desert, worried about the next GI / bathroom emergency, for more than 45 minutes. By the way, I was finally rescued by one of the kindest "medical techs" assigned to me on my floor. Apparently, the order to return me from radiation to the BMT floor was never entered after my radiology tests.
- Anything and everything can cause diarrhea.
- Naps are golden. Give in to the "nap-call" when you can. And plan for them.
My sister stayed with me for the week after my release, and helped me organize my meds. I am only taking Valtrex (valacyclovir) right now. In the hospital, I received Dapsone (diaminodiphenyl sulfone, DDS) through an inhaler, which is good until June 26. At that time, I will start using oral medication. My sister also helped me with my daily needs during the first week I got back. We sent her home, back to her husband, who missed her dearly, on Tuesday. My husband is only 5 minutes away, so, right now, I am doing my own thing, my "theraband" exercises, walking around the house, sitting outside for very brief periods of time (in the shade), and resting.
The day after my release, June 1, I headed back to Philly for a follow up with my doctor. He spent a lot of time reviewing my records and meds. I will return to him next week. I have started a list of questions. So, if anyone has any suggestions on questions to ask, I am all ears. Some things on my list include when I can visit a podiatrist, an E.N.T. (ear, nose throat) doctor, dentist, dermatologist, and what - if any - are the parameters of anything they may treat me for.
(I noticed that I have a small "toenail" fungus spot on my big toenail .... hence, podiatrist.)
I am so grateful to be home and getting better each day. I would be happy to answer any questions about the day-to-day details. I do recognize, more than ever, the individual nature of both the disease of multiple myeloma and the stem cell transplant process. I hope that my experiences with the two setbacks that extended my stay can be used as just something that MAY happen, not that it WILL happen.
Thank you so much for your continued support.
-
computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
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