We have just found out that, even though we are just an hour away from my husband's treatment facility, after the stem cell transplant we cannot be more than 30 minutes away. So we are going to be staying at the American Cancer Society's Hope Lodge for the first 20 days after discharge.
I will be able to run home by having someone come and stay with him for a few hours since we are close, but I would love to hear any tips on what to pack, experiences, etc, from anyone who is willing to share.
The rooms do have their own baths and there is WIFI, but the kitchen facilities are shared, so that will be a little bit of an issue since I will have to shop for and cook our meals. We take a tour of the facility Thursday and I will get a better handle on how things work after that. It is just a short distance from the treatment facility, about 5 minutes, so it will be handy.
My husband was a little disappointed he could not come home, but it is only 20 days and I told him being close to the facility would be better. We have a little dog and he is our baby and we will miss him, but our son is going to watch him for us.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Staying away from home for SCT - tips & advice?
Dogmom,
Things will be fine. My roughest times were probably Day 6-10. I too was outpatient. During the day I would sightsee close to an hour away from the facility. I definitely would have gone home to see my Tomahawk. I never really thought about needing to be near. But at night we needed to be near. You might wake up and be feeling different than when you laid down. I foolishly woke up with a fever and took something and went back to sleep (my caregiver didn't fall back asleep). Sure enough, in an hour my fever was subsiding. I knew if I called the on-call doc he would have sent me to the ER. That was the last place I intended on going with a compromised immune system. Keep in mind I would not recommend necessarily doing what I did. My organs were strong, so I wasn't concerned with heart issues or anything. To be honest, I was depressed to the point that I said, "Screw it, if its going to happen, its going to happen".
Things will be fine. I tell people, you wouldn't be offered outpatient if it wasn't in your best interest.
Things will be fine. My roughest times were probably Day 6-10. I too was outpatient. During the day I would sightsee close to an hour away from the facility. I definitely would have gone home to see my Tomahawk. I never really thought about needing to be near. But at night we needed to be near. You might wake up and be feeling different than when you laid down. I foolishly woke up with a fever and took something and went back to sleep (my caregiver didn't fall back asleep). Sure enough, in an hour my fever was subsiding. I knew if I called the on-call doc he would have sent me to the ER. That was the last place I intended on going with a compromised immune system. Keep in mind I would not recommend necessarily doing what I did. My organs were strong, so I wasn't concerned with heart issues or anything. To be honest, I was depressed to the point that I said, "Screw it, if its going to happen, its going to happen".
Things will be fine. I tell people, you wouldn't be offered outpatient if it wasn't in your best interest.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Staying away from home for SCT - tips & advice?
He will be an inpatient for the chemo and transplant itself. They said approximately 5 days, then discharged to Hope Lodge for the next 20 days.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Staying away from home for SCT - tips & advice?
Hi Dogmom,
Although my wife was at home, the concept is the same. You're fortunate the facility is so close. Driving an hour twice a day if he feels nauseous would be very taxing, so consider the facility a positive compromise.
He's immunocompromised, so avoid any risk of catching infections, as you can't control that environment as you could at home. Part of my wife's nausea was motion-related, so she took Gravol (dimenhydrinate, Dramamine) before driving her to the clinic. It might be advisable for him to wear a mask whenever he leaves his room, as you've no control over the environment. If you don't know already, no flowers, as their spores are a problem. Be prepared for the possibility of a high fever and his having to be admitted overnight if the fever can't be controlled with antibiotics.
Exercise is really important and helps accelerate recovery, whether it's walking the halls and stairs of the lodge, or outdoors if weather permits and his energy permits.
Outpatients usually start to feel better on day 14.
Won't be long before this part of the journey becomes a distant memory. Good luck to you both!
Although my wife was at home, the concept is the same. You're fortunate the facility is so close. Driving an hour twice a day if he feels nauseous would be very taxing, so consider the facility a positive compromise.
He's immunocompromised, so avoid any risk of catching infections, as you can't control that environment as you could at home. Part of my wife's nausea was motion-related, so she took Gravol (dimenhydrinate, Dramamine) before driving her to the clinic. It might be advisable for him to wear a mask whenever he leaves his room, as you've no control over the environment. If you don't know already, no flowers, as their spores are a problem. Be prepared for the possibility of a high fever and his having to be admitted overnight if the fever can't be controlled with antibiotics.
Exercise is really important and helps accelerate recovery, whether it's walking the halls and stairs of the lodge, or outdoors if weather permits and his energy permits.
Outpatients usually start to feel better on day 14.
Won't be long before this part of the journey becomes a distant memory. Good luck to you both!
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Staying away from home for SCT - tips & advice?
We tour the Hope Lodge today. It is a free facility opened and operated by the American Cancer Society in Nashville, Tennessee, where we can stay to be close to the clinic after my husband's stem cell transplant, as we live over 30 minutes away (approximately 1 hour).
There is no eating or drinking in the rooms, not even Coke, coffee, etc. This is strictly enforced. I can see their point. Not everyone would be as clean as they should. There is a large shared kitchen and dinning area on the first floor, but this is a four-floor facility and it will be inconvenient for us to go there just for a coke or a snack. Also, you would have to devise a way to keep your food stored in the kitchen separate etc.
We are fortunate enough to be able to afford to stay somewhere with a kitchenette, so we are also considering this option. There is an Extended Stay America in the same area we are looking at. I think our major medical and AFLAC insurances will pay a portion of our cost as well. It also offers a senior discount for age of 55 and we qualify for this.
If it was only a week or so, but it will be at least 20 days. Thoughts?
There is no eating or drinking in the rooms, not even Coke, coffee, etc. This is strictly enforced. I can see their point. Not everyone would be as clean as they should. There is a large shared kitchen and dinning area on the first floor, but this is a four-floor facility and it will be inconvenient for us to go there just for a coke or a snack. Also, you would have to devise a way to keep your food stored in the kitchen separate etc.
We are fortunate enough to be able to afford to stay somewhere with a kitchenette, so we are also considering this option. There is an Extended Stay America in the same area we are looking at. I think our major medical and AFLAC insurances will pay a portion of our cost as well. It also offers a senior discount for age of 55 and we qualify for this.
If it was only a week or so, but it will be at least 20 days. Thoughts?
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Staying away from home for SCT - tips & advice?
Allison stayed at a Hope Lodge when her mother had a stem cell transplant at Roswell Park. She mentions the Lodge frequently in her postings about her mother's transplant,
"My Mom's Inpatient Stem Cell Transplant at Roswell Park" (started Dec 11, 2014)
and others also comment in the thread about their experiences with Hope Lodges. You may find the postings helpful, both as far as Hope Lodge goes, and about the transplant process in general (Allison did an AMAZING job documenting her mother's transplant).
Note, though, that Allison's mother's transplant was an inpatient transplant.
"My Mom's Inpatient Stem Cell Transplant at Roswell Park" (started Dec 11, 2014)
and others also comment in the thread about their experiences with Hope Lodges. You may find the postings helpful, both as far as Hope Lodge goes, and about the transplant process in general (Allison did an AMAZING job documenting her mother's transplant).
Note, though, that Allison's mother's transplant was an inpatient transplant.
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Jonah
Re: Staying away from home for SCT - tips & advice?
Hello Cathy:
For my wife's autologous stem cell transplant last February, we looked at the medical residence / hotel at Memorial Sloan Kettering Cancer Center in New York City. We were very happy with it. It was like a B+ / A- hotel in New York City. It did have a kitchenette. They also would provide a basic hotel cleaning service each day. That would have been covered under insurance. In our case, it would have been fine. However, due to an odd test result (ultimately a false alarm), it was decided at the last minute to do inpatient.
I have heard great things about the Hope Lodges, but I have not heard about the no-food rule. That could be a downer over 3 weeks.
As I recall, it was harder to get outpatient approved than inpatient (even though inpatient is more expensive). In the end, on some days it was below zero in New York City, so outpatient would have been bad for a person going through an autologous stem cell transplant, and walking 5 blocks in the dead of winter.
My thought for you is that if you are not happy with the accommodations, look to see whether inpatient is a possibility. I lived the 3 weeks in the hospital with my wife. They had her in a double room with a spare bed. It worked out fine in the end. The last 2 or 3 days, I went home to prep the house, help clean and organize it, and shovel the snow in the driveway.
Good luck to you.
For my wife's autologous stem cell transplant last February, we looked at the medical residence / hotel at Memorial Sloan Kettering Cancer Center in New York City. We were very happy with it. It was like a B+ / A- hotel in New York City. It did have a kitchenette. They also would provide a basic hotel cleaning service each day. That would have been covered under insurance. In our case, it would have been fine. However, due to an odd test result (ultimately a false alarm), it was decided at the last minute to do inpatient.
I have heard great things about the Hope Lodges, but I have not heard about the no-food rule. That could be a downer over 3 weeks.
As I recall, it was harder to get outpatient approved than inpatient (even though inpatient is more expensive). In the end, on some days it was below zero in New York City, so outpatient would have been bad for a person going through an autologous stem cell transplant, and walking 5 blocks in the dead of winter.
My thought for you is that if you are not happy with the accommodations, look to see whether inpatient is a possibility. I lived the 3 weeks in the hospital with my wife. They had her in a double room with a spare bed. It worked out fine in the end. The last 2 or 3 days, I went home to prep the house, help clean and organize it, and shovel the snow in the driveway.
Good luck to you.
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JPC - Name: JPC
Re: Staying away from home for SCT - tips & advice?
Thanks for all you posts.
We toured the lodge today, and it looks like a great place, except we ultimately decided that we would be better satisfied with our own kitchenette.
We stopped at the Extended Stay America, and they offer a medical discount. With that and we hope both of our insurances will pay some, we have decided to stay there.
All Hope Lodges may not have the no food or drink rule, but this one does (not so much as a cup of coffee or a Coke in the rooms). It does look like a great place if that does not bother you.
We toured the lodge today, and it looks like a great place, except we ultimately decided that we would be better satisfied with our own kitchenette.
We stopped at the Extended Stay America, and they offer a medical discount. With that and we hope both of our insurances will pay some, we have decided to stay there.
All Hope Lodges may not have the no food or drink rule, but this one does (not so much as a cup of coffee or a Coke in the rooms). It does look like a great place if that does not bother you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Staying away from home for SCT - tips & advice?
My husband will be an inpatient for the chemo and transplant phase and after that if necessary due to counts, how he fairs, etc. They said approx 5 days to a week. Then we will have to stay close for the next three weeks.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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