Hi Steve,
I joined this forum a few months ago because my loved one was diagnosed with multiple myeloma. I knew nothing about this disease and wanted to educate myself to be supportive to him. In the few short months I've been here, I've gotten quite an education. Joining this forum makes me realize my loved one isn't the only person to ever be diagnosed with multiple myeloma. Reading these posts, I don't feel alone and consider all of you my friends.
When I saw you were going to post about your SCT, I was very interested because my loved one will soon be on the same journey. I can't begin to imagine all you have been through these past few weeks, but I know its been no easy feat. When several days went by without hearing from you, I found myself saying "God bless Steve Mohr" often. I would check the forum several times a day for an update. Lo and behold, yesterday there you are! I was so excited!!
Bless you for being so real. "The Dark Days" are behind you and you are now on the road to feeling better everyday. I pray each day finds you only improving more and more.
Listen to your body. Get plenty of rest. Don't overdo it. You will get there. It will happen.
I continue to pray for you and for a speedy recovery and, again, thank you for sharing your journey with us. Its so good to hear from you!
God Bless You,
Kim
Forums
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Steve Mohr's Stem Cell Transplant
In this, my next to last posting on this thread, I want share my experiences from days 9-16 in the hope that it will help those who are soon to undergo a transplant or those who are contemplating a transplant.
Some things that I was unprepared for or I found surprising:
Tomorrow, I will share with you my life since discharge.
Some things that I was unprepared for or I found surprising:
- There were virtually no restrictions on visitors. Despite this, my wife and I decided that we would limit visitors to my wife and children. This was almost entirely based on the fact that I am intolerable to be around when sick. We also agreed that my wife would not be with me 24/7. Even though she was there for 14 of the 16 days I was hospitalized, on most days she was there, she only stayed for 3-4 hours. I believe this was one of the smartest things we did as it reduced the burden on her, and we all know the burden that our primary caregivers shoulder.
- I was not prepared to be hooked to an IV for my entire stay in the hospital. I was able to master the daily showers while "hooked up", but the sudden bouts of diarrhea proved more problematic and led to many embarassing and demeaning incidents. Based on my experiences, this is inevitable and unavoidable.
- The food restrictions were far less restrictive than what I originally expected. The variety of food offered by the food service was extensive. Outside food was permitted with approval and we were encouraged to bring in snacks that we enjoyed. A food galley was available for patient use that was stocked with a wide variety of foods. I ate very little during the first 10 days due to constant bouts of nausea and the after taste that everythng I ate had.
- I exercised three times a day with laps around the nurses station,attempting to increase my laps each day. Not only was this highly recommended by my oncologist and attending nurses, but it also broke the boring monotony of my day.
Tomorrow, I will share with you my life since discharge.
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: Steve Mohr's Stem Cell Transplant
Thank you for the honest and informative update, Steve. I am sorry for how tough the transplant has been for you, but I'm really glad to see that you're doing better. I hope the positive trend continues.
Re: Steve Mohr's Stem Cell Transplant
This will be my last update in this thread as I will update the readers of The Beacon in the future about what I am experiencing through my monthly columns for The Beacon. (I am happy, though, to answer here any follow-up questions people may have in regard to the updates I've posted in this thread.)
I was discharged from the hospital on June 26, exactly 16 days after being admitted. My WBC count had risen to 5.6, tripling from Day #15 to Day #16, and my other numbers were steadily climbing.
Although I had exercised regularly while hospitalized, the 1 hour 20 minute car ride home wore me out, which was a very quick reminder to me that things were going to go slow in terms of getting back to a normal routine. At the time of my discharge, a follow up appointment was scheduled for July 1. Unfortunately, over the weekend the urinary tract condition (which had been pretty much put under control) returned, and the weekend before my first check up was not very comfortable.
At my July 1 check I was cleared of all dietary restrictions (except sushi, which I don't like anyway) and physical restrictions. This was surprising, but I was told that there was nothing in the research and data that indicate that tight restrictions on diet and activity upon discharge have had any impact on recovery -- whether it be short term or long term.
Because the gastrointestinal issues had pretty much come under control, I worked at the office for 2 hours each day on July 2nd and 3rd. I then rested at home for several hours and then spent 3-4 hours working from home. During this past week, I eventually was able to increase my hours at the office to 4 hours a day. It has been great to get back to work, but it has been interesting to note how mental work results in physical fatigue.
Apart from tiring very quickly and some bone and muscle pain, I feel good. From an emotional and mental standpoint, I haven't felt this good since .... I can't remember when, it has been that long.
On July 18, I return for another check up and am hoping at that time to learn the impact the stem cell transplant has had on my condition.
I appreciate the positive comments and words of support during this process from so many of you. I only wish I had been able to post more regularly during my hospitalization, to give more insight to those about to undergo a transplant and to those who may be considering a transplant.
I was discharged from the hospital on June 26, exactly 16 days after being admitted. My WBC count had risen to 5.6, tripling from Day #15 to Day #16, and my other numbers were steadily climbing.
Although I had exercised regularly while hospitalized, the 1 hour 20 minute car ride home wore me out, which was a very quick reminder to me that things were going to go slow in terms of getting back to a normal routine. At the time of my discharge, a follow up appointment was scheduled for July 1. Unfortunately, over the weekend the urinary tract condition (which had been pretty much put under control) returned, and the weekend before my first check up was not very comfortable.
At my July 1 check I was cleared of all dietary restrictions (except sushi, which I don't like anyway) and physical restrictions. This was surprising, but I was told that there was nothing in the research and data that indicate that tight restrictions on diet and activity upon discharge have had any impact on recovery -- whether it be short term or long term.
Because the gastrointestinal issues had pretty much come under control, I worked at the office for 2 hours each day on July 2nd and 3rd. I then rested at home for several hours and then spent 3-4 hours working from home. During this past week, I eventually was able to increase my hours at the office to 4 hours a day. It has been great to get back to work, but it has been interesting to note how mental work results in physical fatigue.
Apart from tiring very quickly and some bone and muscle pain, I feel good. From an emotional and mental standpoint, I haven't felt this good since .... I can't remember when, it has been that long.
On July 18, I return for another check up and am hoping at that time to learn the impact the stem cell transplant has had on my condition.
I appreciate the positive comments and words of support during this process from so many of you. I only wish I had been able to post more regularly during my hospitalization, to give more insight to those about to undergo a transplant and to those who may be considering a transplant.
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: Steve Mohr's Stem Cell Transplant
It sounds as though you are doing great! Going to work already is wonderful.
How is your appetite? Did you lose much weight in the hospital?
Wishing you continued improvement!
How is your appetite? Did you lose much weight in the hospital?
Wishing you continued improvement!
Re: Steve Mohr's Stem Cell Transplant
My appetite is slowy returning. Having said that, nothing tastes the same as it did prior to starting treatment in November. The only thing that tastes the same as it did before is neapolitan ice cream. I eat about a half gallon of that a day!
I lost 22 pounds (10 kg) over the 16 days I was hospitalized.
I lost 22 pounds (10 kg) over the 16 days I was hospitalized.
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: Steve Mohr's Stem Cell Transplant
Thanks, Steve, for taking the time to share with us so much about your transplant experience.
I'm sorry the experience was a lot tougher at times than you expected. I must say, though, that I'm amazed that you're already working again and writing things like "Apart from tiring very quickly and some bone and muscle pain, I feel good".
I hope your recovery continues to go well and that the high-dose melphalan you got last month is the last myeloma treatment you'll need for a very, very long time.
I'm sorry the experience was a lot tougher at times than you expected. I must say, though, that I'm amazed that you're already working again and writing things like "Apart from tiring very quickly and some bone and muscle pain, I feel good".
I hope your recovery continues to go well and that the high-dose melphalan you got last month is the last myeloma treatment you'll need for a very, very long time.
Re: Steve Mohr's Stem Cell Transplant
Hi Steve,
Thanks again SO MUCH for sharing! I know many, many people are reading your updates and the help of the scary uncertainty you are giving others is amazing. Glad to hear you are out of the hospital and recovering! Many prayers and best wishes to you!
Thanks again for sharing ... and keep fighting
Thanks again SO MUCH for sharing! I know many, many people are reading your updates and the help of the scary uncertainty you are giving others is amazing. Glad to hear you are out of the hospital and recovering! Many prayers and best wishes to you!
Thanks again for sharing ... and keep fighting
Re: Steve Mohr's Stem Cell Transplant
Great to hear that you are through the worst of it Steve, you had us worried there for a while. Thanks for posting your progress and helping the rest of us to go into this experience with 'eyes open' to some of the possible issues we would need to confront.
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Steve Mohr's Stem Cell Transplant
KimT,
I'm wondering if you had your SCT yet? If so, hope all went well.
Take care, Stan
I'm wondering if you had your SCT yet? If so, hope all went well.
Take care, Stan
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stann
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