Day 99
Yep. It's that day. I felt like I needed to post just because. So, just a quick check in.
I have Day 100 on all of my calendars and on all of Mom's. Tomorrow, I will travel to my parents house and then on Monday we go to Roswell for the final appointment with the BMT doctor.
Also, it is spring. Winter has been long and hard - for more reasons than one this year.
I remember Day 1 - the first day I posted - I couldn't see to Day 99 at that time.
Interesting notes: My parents got the bill from the hospital. All of it was approved and covered by insurance: It was $300,000. 32 days in the hospital. $179,000 of it was for nursing care. Wow.
Forums
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Allison, I will keep you and your mom in my thoughts and prayers and hope for nothing but excellent news from your 100 day check up.
-
Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 100
I was thinking today while I was driving across Pennsylvania about the significance of 100 days.
I mean, explaining this whole process and the "100 days" thing to other people outside of this world is pretty difficult. When we were living at Hope Lodge, the 100 day mark was talked about everyday. The allogeneic transplant folks talked about going home, being able to eat salad, getting back into some sort of routine, or just being able to sit in their favorite chair. There were several people who were in the days of 70's and 80's wearing holes in the carpets pacing around Hope Lodge to fill the time. One gentleman, said that, even though he wanted to go home, he knew that once he was there, he would need to take things slow. Another was just so grateful to be feeling as good as he was and for all the support all around him; but, admittedly, couldn't wait to get home. They had to wait out those 100 days in close proximity to the hospital and became the wisdom and soul of the house as others came and went. There was a lot to be learned from the "100 day-ers".
Of course, my mom, being an auto, was a little different. 1 night in a hotel on the day of pre-admission; 32 days in the hospital; 7 days at Hope lodge; 61 days at home.
What do we do in 100 days? I once followed a "100 days to run a marathon plan". There are a number of movies with the title "100 days". There is a web site called "100daysofsummer.org". My nephew and his class celebrate "100 days of school". We talk of the the president's "First 100 Days" There's Napoleon's "100 days" ending with Waterloo, and it seems that in 100 days you can do just about everything from getting a better body / attitude / house / hair / car / etc.
So what is it about the number 100? It seems to be everywhere. Yet, until recently, I never really noticed. And all this time, there is a whole world of people counting down 100 days but, at the end of 100 days, then what?
I mean, after 100 days, I ran a very successful marathon. After a 100 days of cleaning your house; your house will be pretty clean! But 100 days after a stem cell transplant; it's not really over. Recovery continues. A waiting game beings. Numbers still play a part: white blood cell counts, M-spike, platelets, mg of Revlimid, co-pay amounts, and on and on.
Maybe, somehow, the number 100 makes whatever we desire seem attainable. It's tangible. Our 10 finger counting system makes things in "10's" seem natural. 10 days would seem too little for many things. 10 years is too much. But the number '100' - THAT seems right. Conquer the nation in 100 days. Figure out your new job in 100 days. Get better at fill-in-the-blank in 100 days. A 100 days process after the stem cell transplant.
100 days it is.
I'm going to hope for many 100's of days full of many 100's of good things for everyone.
High 100's all around,
-Allison
I was thinking today while I was driving across Pennsylvania about the significance of 100 days.
I mean, explaining this whole process and the "100 days" thing to other people outside of this world is pretty difficult. When we were living at Hope Lodge, the 100 day mark was talked about everyday. The allogeneic transplant folks talked about going home, being able to eat salad, getting back into some sort of routine, or just being able to sit in their favorite chair. There were several people who were in the days of 70's and 80's wearing holes in the carpets pacing around Hope Lodge to fill the time. One gentleman, said that, even though he wanted to go home, he knew that once he was there, he would need to take things slow. Another was just so grateful to be feeling as good as he was and for all the support all around him; but, admittedly, couldn't wait to get home. They had to wait out those 100 days in close proximity to the hospital and became the wisdom and soul of the house as others came and went. There was a lot to be learned from the "100 day-ers".
Of course, my mom, being an auto, was a little different. 1 night in a hotel on the day of pre-admission; 32 days in the hospital; 7 days at Hope lodge; 61 days at home.
What do we do in 100 days? I once followed a "100 days to run a marathon plan". There are a number of movies with the title "100 days". There is a web site called "100daysofsummer.org". My nephew and his class celebrate "100 days of school". We talk of the the president's "First 100 Days" There's Napoleon's "100 days" ending with Waterloo, and it seems that in 100 days you can do just about everything from getting a better body / attitude / house / hair / car / etc.
So what is it about the number 100? It seems to be everywhere. Yet, until recently, I never really noticed. And all this time, there is a whole world of people counting down 100 days but, at the end of 100 days, then what?
I mean, after 100 days, I ran a very successful marathon. After a 100 days of cleaning your house; your house will be pretty clean! But 100 days after a stem cell transplant; it's not really over. Recovery continues. A waiting game beings. Numbers still play a part: white blood cell counts, M-spike, platelets, mg of Revlimid, co-pay amounts, and on and on.
Maybe, somehow, the number 100 makes whatever we desire seem attainable. It's tangible. Our 10 finger counting system makes things in "10's" seem natural. 10 days would seem too little for many things. 10 years is too much. But the number '100' - THAT seems right. Conquer the nation in 100 days. Figure out your new job in 100 days. Get better at fill-in-the-blank in 100 days. A 100 days process after the stem cell transplant.
100 days it is.
I'm going to hope for many 100's of days full of many 100's of good things for everyone.
High 100's all around,
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Thank you for the update, Allison. I wish that your mother get lots of good news during her upcoming appointments.
Your essay on the significance of 100 is a nice thought-provoker. I had never really connected the notion of a 100-day post-transplant checkup with a broader tendency in society to speak of "100 days of this-or-that". Good point.
Your essay on the significance of 100 is a nice thought-provoker. I had never really connected the notion of a 100-day post-transplant checkup with a broader tendency in society to speak of "100 days of this-or-that". Good point.
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hi Allison,
I loved your 100 Day post! So many good and important things to think about in what you wrote.
In the end, it is just a number, but it's something almost tangible to aim for.
My myeloma center used 90 days instead of 100 days as the point for all the tests and the transfer from the transplant specialist back to my regular myeloma specialist. I was happy to have the process move along 10% faster
, but there is something special about the number 100.
One of the important points that you made is that recovery from the SCT is certainly not "over" at 100 days (or 90 days). A lot of things do become more normal. For me, being able to eat salads again was a very big deal. But the overall recovery is a much longer process. Also, your mother's myeloma-related numbers can continue to change / improve even beyond the 100 days.
Congratulations to your Mom, you, and the rest of your family on reaching this milestone. And best wishes for great test results. Please keep us posted on those!
Mike
I loved your 100 Day post! So many good and important things to think about in what you wrote.
In the end, it is just a number, but it's something almost tangible to aim for.
My myeloma center used 90 days instead of 100 days as the point for all the tests and the transfer from the transplant specialist back to my regular myeloma specialist. I was happy to have the process move along 10% faster
, but there is something special about the number 100.One of the important points that you made is that recovery from the SCT is certainly not "over" at 100 days (or 90 days). A lot of things do become more normal. For me, being able to eat salads again was a very big deal. But the overall recovery is a much longer process. Also, your mother's myeloma-related numbers can continue to change / improve even beyond the 100 days.
Congratulations to your Mom, you, and the rest of your family on reaching this milestone. And best wishes for great test results. Please keep us posted on those!
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 101
Today, I sort of feel like now we are on the other side of a wall.
On one side of the wall, my mom was VGPR before the transplant. And now, on the other side of the wall, she is CR.
There is so much talk about what happens on that side; treatment, transplant, meds, rules, restrictions. But very little chance to peak over the wall to the other side of Day 100.
Well, here we are. The other side of the wall means the end of visits to the BMT Clinic and back to the Leukemia / Lymphoma Clinic in about a week. The other side of the wall means that now my mom can drive, but she still can’t garden or have fresh plants or flowers around. The other side of the wall means looking at titers and talking about re-immunizations starting at Day 180 (more counting) The other side of the wall means a cautious and gradual return life. But with great care, particularly until the immunizations are done, and then even then.
But first; there is today. The first day over the wall.
The day started with lab work; just a few vials this time (a nice change from 2 weeks ago with the 23 vials!) and then a visit to the resource center where we have come to know the people that work there. I had a bag of books and some hats to donate, and this place is a warm and welcoming place with people there to help and support. Mondays are very busy at Roswell and there was a lot of activity: busy at the patient drop off, a pianist playing the foyer, a therapy dog visiting in the lobby, the same cafeteria, the same coffee spots. We have become so familiar with all of this.
We had a long wait but, once into the clinic; vitals, meds review with the RN, and then the PA came in with all the results of the tests from two weeks ago. Then the doctor came in.
The long and the short:
Her counts are fine. WBC is a little low (3.30), but the doctor was not concerned, though I know it makes my mom nervous. The dex scan shows her to be osteopenic in the same places as before the transplant, but no changes it the skeletal survey. Of course, this is good thing. A side note: The PA mentioned that there is a patient that is 10 years post transplant and his skeletal survey has actually improved. Imagine that!
Everything else showed what you want it to show except for the kappa free light chains. They have gone way up, which is discordant with everything else (the doctor’s words). He double-checked everything. The marrow is good, there is no evidence of minimal residual disease, the cytogenetic analysis was the same and all normal, beta 2 was normal, the M-spike was ‘none seen’, the IgA is even lower than before the transplant (13!) The 24-hour urine results said “M-spike not seen; no free light chains”. The conclusion: redo the blood work for the kappa free light chains.
Complete response it is. If the light chains were in line with everything else, it would have been stringent complete response. Re-staging is made difficult because of these results.
So, what did all this get us? The doctor said the hope is that the transplant killed more myeloma cells to delay the time it will take for them to come back. That’s what we all are striving for, aren’t we?
Now what?
My mom has developed a cataract since the transplant, which she can have fixed in consultation with her oncologist. Since the transplant, she has no appetite; she eats when it’s time to eat, but has lost some weight. She can travel – my parents have a trip planned for the fall – which the doctor felt would be okay. And she can work – as long as she is not around sick people or people who have not been immunized, since she is deficient in some of her titers now. And maintenance therapy. Soon. Maybe in a week.
There was this very, very brief feeling of being done. Complete. Moving on. But, really, it’s just the beginning. The new phase. So many questions answered today, but the new ones have already begun.
I feel like we talk in details and yet we are still just making broad-brush strokes. Today felt like we were in some sort of transition as we clambered over the wall, but, in a way, it is all the same. ‘Your numbers look great but still be careful.’ ‘Go back to work; but don’t be around too many people.’ I mean, maybe there should have been balloons or a cupcake. Right?
So, after we got home, 9 hours after we left, some dinner, and my mom drove for the first time since before the transplant. She went by herself, to a meeting – her first outing by herself in a long time. That must've felt good.
And in their house … there are balloons.
-Allison
Today, I sort of feel like now we are on the other side of a wall.
On one side of the wall, my mom was VGPR before the transplant. And now, on the other side of the wall, she is CR.
There is so much talk about what happens on that side; treatment, transplant, meds, rules, restrictions. But very little chance to peak over the wall to the other side of Day 100.
Well, here we are. The other side of the wall means the end of visits to the BMT Clinic and back to the Leukemia / Lymphoma Clinic in about a week. The other side of the wall means that now my mom can drive, but she still can’t garden or have fresh plants or flowers around. The other side of the wall means looking at titers and talking about re-immunizations starting at Day 180 (more counting) The other side of the wall means a cautious and gradual return life. But with great care, particularly until the immunizations are done, and then even then.
But first; there is today. The first day over the wall.
The day started with lab work; just a few vials this time (a nice change from 2 weeks ago with the 23 vials!) and then a visit to the resource center where we have come to know the people that work there. I had a bag of books and some hats to donate, and this place is a warm and welcoming place with people there to help and support. Mondays are very busy at Roswell and there was a lot of activity: busy at the patient drop off, a pianist playing the foyer, a therapy dog visiting in the lobby, the same cafeteria, the same coffee spots. We have become so familiar with all of this.
We had a long wait but, once into the clinic; vitals, meds review with the RN, and then the PA came in with all the results of the tests from two weeks ago. Then the doctor came in.
The long and the short:
Her counts are fine. WBC is a little low (3.30), but the doctor was not concerned, though I know it makes my mom nervous. The dex scan shows her to be osteopenic in the same places as before the transplant, but no changes it the skeletal survey. Of course, this is good thing. A side note: The PA mentioned that there is a patient that is 10 years post transplant and his skeletal survey has actually improved. Imagine that!
Everything else showed what you want it to show except for the kappa free light chains. They have gone way up, which is discordant with everything else (the doctor’s words). He double-checked everything. The marrow is good, there is no evidence of minimal residual disease, the cytogenetic analysis was the same and all normal, beta 2 was normal, the M-spike was ‘none seen’, the IgA is even lower than before the transplant (13!) The 24-hour urine results said “M-spike not seen; no free light chains”. The conclusion: redo the blood work for the kappa free light chains.
Complete response it is. If the light chains were in line with everything else, it would have been stringent complete response. Re-staging is made difficult because of these results.
So, what did all this get us? The doctor said the hope is that the transplant killed more myeloma cells to delay the time it will take for them to come back. That’s what we all are striving for, aren’t we?
Now what?
My mom has developed a cataract since the transplant, which she can have fixed in consultation with her oncologist. Since the transplant, she has no appetite; she eats when it’s time to eat, but has lost some weight. She can travel – my parents have a trip planned for the fall – which the doctor felt would be okay. And she can work – as long as she is not around sick people or people who have not been immunized, since she is deficient in some of her titers now. And maintenance therapy. Soon. Maybe in a week.
There was this very, very brief feeling of being done. Complete. Moving on. But, really, it’s just the beginning. The new phase. So many questions answered today, but the new ones have already begun.
I feel like we talk in details and yet we are still just making broad-brush strokes. Today felt like we were in some sort of transition as we clambered over the wall, but, in a way, it is all the same. ‘Your numbers look great but still be careful.’ ‘Go back to work; but don’t be around too many people.’ I mean, maybe there should have been balloons or a cupcake. Right?
So, after we got home, 9 hours after we left, some dinner, and my mom drove for the first time since before the transplant. She went by herself, to a meeting – her first outing by herself in a long time. That must've felt good.
And in their house … there are balloons.
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
CherylG: Thank you for your good wishes and always for your support throughout all of this.
Mikeb: you are like the wise soul here. Since I started posting, you have posted words of support and advice and I have taken them in and appreciated them.
Remember when you and I were sharing our experiences at Hope Lodge? Today, we ran into a mother and son who were fairly new to Hope Lodge when we moved out. The son was getting ready for his first of two transplants. You and I know what a family everyone becomes even as we move in and out and new faces come and go. First of all, they didn't even recognize my mother, not having seen her since she was discharged from the hospital (she looks much better), and I was able to ask them about some people that I was worried about. Sadly, the husband of one of the people staying there who had become very ill after his transplant died, as did a gentleman who was recovering from a transplant at the house.
I was so sad to hear it and it bears noting how, even though our time with these people was short, it was intense. We are all vulnerable together and that leads to a short cut in the getting to know one another. While I never met the husband, I did spend time with his wife, sharing our days and our worries and my heart breaks for her. The gentleman was surrounded by family members taking turns as his caregiver, giving as much of themselves as he would allow. And the common denominator that brought us into each other's lives was this place - Hope Lodge.
Mikeb: you are like the wise soul here. Since I started posting, you have posted words of support and advice and I have taken them in and appreciated them.
Remember when you and I were sharing our experiences at Hope Lodge? Today, we ran into a mother and son who were fairly new to Hope Lodge when we moved out. The son was getting ready for his first of two transplants. You and I know what a family everyone becomes even as we move in and out and new faces come and go. First of all, they didn't even recognize my mother, not having seen her since she was discharged from the hospital (she looks much better), and I was able to ask them about some people that I was worried about. Sadly, the husband of one of the people staying there who had become very ill after his transplant died, as did a gentleman who was recovering from a transplant at the house.
I was so sad to hear it and it bears noting how, even though our time with these people was short, it was intense. We are all vulnerable together and that leads to a short cut in the getting to know one another. While I never met the husband, I did spend time with his wife, sharing our days and our worries and my heart breaks for her. The gentleman was surrounded by family members taking turns as his caregiver, giving as much of themselves as he would allow. And the common denominator that brought us into each other's lives was this place - Hope Lodge.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
I'm so glad to hear about your mother's response to her transplant, Allison. That's great news. Thanks for the update, and thank you again for all the detailed updates you've provided everyone in the forum during your mother's transplant. They are so incredibly helpful.
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Hi Allison,
First of all, I am so happy to hear about your mother's excellent response and other good numbers! That's super news! Congratulations to your mom, and you, and her medical team.
I was interested to see that your mother will start to get some immunizations at +180 days. They didn't start me on any of mine until +1 year.
Second, thanks so much for the kind words; you made my day! I must admit, though, that I sure don't think of myself as a "wise soul." There is still so much more that I need to learn - about multiple myeloma, about cancer, and about so many other things.
Finally, I sure do remember our discussion here about Hope Lodge. It's neat that you were able to visit Hope Lodge again and see the mother and son again. I hope the son is doing well. And it's pretty cool that they didn't recognize your mom because she is looking so much better now. I'm sorry, though, to hear about the two people who died. You put it very well - staying there was an intense experience. I still think about the people I met when I stayed at Hope Lodge, wondering how they are doing.
Thanks again for all your posts. Here's wishing your mother a very, very long time in CR, or better!
Mike
First of all, I am so happy to hear about your mother's excellent response and other good numbers! That's super news! Congratulations to your mom, and you, and her medical team.
I was interested to see that your mother will start to get some immunizations at +180 days. They didn't start me on any of mine until +1 year.
Second, thanks so much for the kind words; you made my day! I must admit, though, that I sure don't think of myself as a "wise soul." There is still so much more that I need to learn - about multiple myeloma, about cancer, and about so many other things.
Finally, I sure do remember our discussion here about Hope Lodge. It's neat that you were able to visit Hope Lodge again and see the mother and son again. I hope the son is doing well. And it's pretty cool that they didn't recognize your mom because she is looking so much better now. I'm sorry, though, to hear about the two people who died. You put it very well - staying there was an intense experience. I still think about the people I met when I stayed at Hope Lodge, wondering how they are doing.
Thanks again for all your posts. Here's wishing your mother a very, very long time in CR, or better!
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 103
I have a confession to make.
I didn't tell my mom that I was writing this thread. And I didn't tell all of you that I hadn't told my mom. It was meant to be from the point of view of a caretaker and I didn't ever want her to feel like I was always reporting on her. Which, of course, I was.
I am a note taker. I am on my 4th notebook since I started going to doctor's appointments with her. Then, I come home and type up my notes, print them out and put them into a folder labeled "Notes" for my mom to have with all her other test results, pamphlets, etc. So, it was not unusual that I was always writing and later transcribing onto my laptop.
Just the other day, my mom said "I haven't been in the Beacon in a while." It was one of the last sites that I found and by then, we were on information overload in the build up to the transplant. And since I had started posting on Day 99, the thread was on the first page.
Well ... yesterday, she found it. Hi, Mom!
She said she thought the tread title looked familiar and then she recognized my user name. She said that she is learning a lot. I had never told her about the car vandalism, which she mentioned to me today. I told her that I hadn't edited. Meaning, I wrote what was happening and what I was feeling because I felt like that was sort of the point. She was pleased to read that even at her worst, that I could see glimmers of her sense of humor poking through.
The feeling of having graduated from the BMT clinic (her words) seem to have given my mom a boost. She is eager to get her CR-self out into the world. She hasn't even had a nap in 4 days! Definitely ready to not be stuck in the house.
Today we went out for waffles (It's International Waffle Day - the anniversary of the patent for the waffle maker!) and then went shopping. Her weight loss means that she has a lot of clothes that hang off of her. We had a good time finding new things and also finding things to laugh about (wigs can fall off when you try on clothes in a store - oops). She is experimenting with scarves and we got online last night and found some good sites with how to's and advice. (Goodwishesscarves.org donates a pre-tied scarf to anyone who requests one). She has even mentioned finally getting to see the grandson's - she has 3 and hasn't seem them in nearly a year.
Her next appointment at Roswell is the day after Easter so she gets a bit of time before the return to Revlimid and the beginning of "maintenance."
-Allison
I have a confession to make.
I didn't tell my mom that I was writing this thread. And I didn't tell all of you that I hadn't told my mom. It was meant to be from the point of view of a caretaker and I didn't ever want her to feel like I was always reporting on her. Which, of course, I was.
I am a note taker. I am on my 4th notebook since I started going to doctor's appointments with her. Then, I come home and type up my notes, print them out and put them into a folder labeled "Notes" for my mom to have with all her other test results, pamphlets, etc. So, it was not unusual that I was always writing and later transcribing onto my laptop.
Just the other day, my mom said "I haven't been in the Beacon in a while." It was one of the last sites that I found and by then, we were on information overload in the build up to the transplant. And since I had started posting on Day 99, the thread was on the first page.
Well ... yesterday, she found it. Hi, Mom!
She said she thought the tread title looked familiar and then she recognized my user name. She said that she is learning a lot. I had never told her about the car vandalism, which she mentioned to me today. I told her that I hadn't edited. Meaning, I wrote what was happening and what I was feeling because I felt like that was sort of the point. She was pleased to read that even at her worst, that I could see glimmers of her sense of humor poking through.
The feeling of having graduated from the BMT clinic (her words) seem to have given my mom a boost. She is eager to get her CR-self out into the world. She hasn't even had a nap in 4 days! Definitely ready to not be stuck in the house.
Today we went out for waffles (It's International Waffle Day - the anniversary of the patent for the waffle maker!) and then went shopping. Her weight loss means that she has a lot of clothes that hang off of her. We had a good time finding new things and also finding things to laugh about (wigs can fall off when you try on clothes in a store - oops). She is experimenting with scarves and we got online last night and found some good sites with how to's and advice. (Goodwishesscarves.org donates a pre-tied scarf to anyone who requests one). She has even mentioned finally getting to see the grandson's - she has 3 and hasn't seem them in nearly a year.
Her next appointment at Roswell is the day after Easter so she gets a bit of time before the return to Revlimid and the beginning of "maintenance."
-Allison
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Return to Treatments & Side Effects