I’ve wrestled with how I might contribute a bit more to this community from which I’ve derived so much benefit.
Perhaps rather than a transplant blow by blow, although these have certainly been helpful, I’ll attempt a more interior subjective look. Let’s see if it works
Last spring after my initial diagnosis I met with my myeloma specialist. He did a nice job of white board summarizing what I already knew. But I did leave with something unexpected, a psychological diagnosis. His departing words still echo, “You’ll be pragmatic”. Was he being prescient, prophetic, or hopeful that I would adopt the mental framework needed for what was to come.
Is pragmatism the way I really “work,” or am I acting on a subliminal message? Who knows, we’re complicated. I do seem to have embraced this approach. For me it’s subtly different than embracing a new normal. It allows me to put a little more interior distance between myself and an uninvited houseguest whose stay has turned into a long term relationship. “You get your own own room but not the whole house”.
September last began Revlimid, Velcade, and dexamethasone (RVD) treatment after a relatively brief smoldering period. The guest was inconvenient to be sure, but my gym fitness routine continued, I was careful about my food intake, and I revived an old cycling passion. “Give yourself your best shot. Don’t show up at the stem cell transplant with preventable co-morbidities. Is this obsessive or pragmatic?” Will the dialogue ever stop? Occasionally.
Transplant workup day: is fretting pragmatic? “Did I achieve a deep enough response? Manage your expectations, you know your genetics are problematic. What is this hip pain all about? Overtraining, treatment related, disease related. When will the PET be posted? What about SPEP results? BMP Pathology? I’m not going to wait for the consult, I “know” that I and google can wade through the reports and make some sense of it all”. Pragmatism, bah humbug.
Consult Day: “Stringent Response”. “Be careful, don’t read too much into it. Don’t allow any unreasoned expectations to emerge. Come on, manage, retain objectivity, next step, let’s go.” Pragmatism is a lot of work.
Trifusion Line: “What’s this hanging out of my chest”. Have I grown some new appendage? A lifetime of intake through eye, ear, nose, and taste and now a new “sensory organ”. Sensory delights don’t seem to be it’s function.
Cytoxan with CADD today: Resolute, resolved. Try not to overburden my spouse. “I can handle this, you stay in, It’s cold and wet, be back in a bit”.
Shorter post to follow. I promise.
Farcical (Fred)
Forums
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
Love your post. Can't wait to read more.
“You get your own own room but not the whole house”; especially good. We fight that sentiment with my husband's smoldering myeloma, which is now clearly on the move.
“You get your own own room but not the whole house”; especially good. We fight that sentiment with my husband's smoldering myeloma, which is now clearly on the move.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: An occasional subjective stem cell transplant account
Best of luck with the transplant, Fred. I hope everything is going (has gone?) well.
Re: An occasional subjective stem cell transplant account
I find myself on the eve of admission to the transplant unit. The expected stay should be 10-14 days.
A sense of foreboding somehow has emerged unasked. I've tried to track it's source to perhaps influence this emotion in a better direction. Maybe the conditioning regimen of the last several weeks has affected my "pragmatism" and objectivity. These relatively mild interventions serve notice of changes afoot.
Residual effects of Revlimid, Velcade, and dexamethasone (RVD) along with the conditioning and harvest therapy of Cytoxan (cyclophosphamide), Neupogen (filgrastim), and apherisis have been illustrative. Hips, Hiccups, Hair, and other hijinks arise as reminders of subterranean activity. Biological "tectonic plates" are moving. Where solidity once reigned, now fissures, cracks, and subsidence arise as evidence of deep subtle biological movements beyond the ken of human perception, thankfully. I'm not sure I want to "feel" that deeply.
I, like others, try to build an internal framework to prepare for what is to come, but why does it seem that what emerged was not in the frame. A more severe intervention awaits. Adjust the frame? But how?
Fred
A sense of foreboding somehow has emerged unasked. I've tried to track it's source to perhaps influence this emotion in a better direction. Maybe the conditioning regimen of the last several weeks has affected my "pragmatism" and objectivity. These relatively mild interventions serve notice of changes afoot.
Residual effects of Revlimid, Velcade, and dexamethasone (RVD) along with the conditioning and harvest therapy of Cytoxan (cyclophosphamide), Neupogen (filgrastim), and apherisis have been illustrative. Hips, Hiccups, Hair, and other hijinks arise as reminders of subterranean activity. Biological "tectonic plates" are moving. Where solidity once reigned, now fissures, cracks, and subsidence arise as evidence of deep subtle biological movements beyond the ken of human perception, thankfully. I'm not sure I want to "feel" that deeply.
I, like others, try to build an internal framework to prepare for what is to come, but why does it seem that what emerged was not in the frame. A more severe intervention awaits. Adjust the frame? But how?
Fred
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
I think the foreboding you are experiencing, Fred, is completely natural. The transplant experience can be very challenging for some people. Not all people, by any means. But for some people. Best to prepare for the very worst and allow yourself to be pleasantly surprised.
Do everything your transplant team tells you to avoid mucositis (mouth sores). Be prepared for "digestion-related challenges" that are a whole order of magnitude worse than anything you've ever experienced before. Do the best you can to avoid getting an infection, but recognise it still may happen. Walk each day as much as you absolutely can.
Good luck!
Do everything your transplant team tells you to avoid mucositis (mouth sores). Be prepared for "digestion-related challenges" that are a whole order of magnitude worse than anything you've ever experienced before. Do the best you can to avoid getting an infection, but recognise it still may happen. Walk each day as much as you absolutely can.
Good luck!
Re: An occasional subjective stem cell transplant account
Ian,
I appreciate your guidance on approaching this process. It’s the “framework” I need.
Fred
I appreciate your guidance on approaching this process. It’s the “framework” I need.
Fred
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
Hi Fred,
I think that by having gone thru the stem cell harvest you are already well along the transplant process. Now, when you are in hospital, you can try to relax and let this process take its course. It was reassuring to me to know that it is quite safe, even though onerous. I had about a two week period where I didn't even pencil in a journal, since I was tired and just focussing on the daily blood tests. Eventually everything improved and the new blood cells that were produced from the stem cells started to appear. In the meanwhile, the circulating blood cells were still there, for their normal periods of time.
I am sure you would be in good hands, and need to follow medical advice. I am not sure if ice chips are still given to counteract mucositis, but it is very important to try to avoid having that. Did they give you a handout with some advice also?
Good luck and keep us posted!
I think that by having gone thru the stem cell harvest you are already well along the transplant process. Now, when you are in hospital, you can try to relax and let this process take its course. It was reassuring to me to know that it is quite safe, even though onerous. I had about a two week period where I didn't even pencil in a journal, since I was tired and just focussing on the daily blood tests. Eventually everything improved and the new blood cells that were produced from the stem cells started to appear. In the meanwhile, the circulating blood cells were still there, for their normal periods of time.
I am sure you would be in good hands, and need to follow medical advice. I am not sure if ice chips are still given to counteract mucositis, but it is very important to try to avoid having that. Did they give you a handout with some advice also?
Good luck and keep us posted!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: An occasional subjective stem cell transplant account
Glad to help, Fred.
The walking that I mentioned is more important than you might think. It's my understanding that it's not just helpful in terms of the exercise you'll get. From what I've read or been told (I can't remember which it was), the movement that occurs while walking speeds up the engraftment of your re-infused stem cells. That's a good thing because the quicker the engraftment goes, the quicker you have your immune system back.
The walking that I mentioned is more important than you might think. It's my understanding that it's not just helpful in terms of the exercise you'll get. From what I've read or been told (I can't remember which it was), the movement that occurs while walking speeds up the engraftment of your re-infused stem cells. That's a good thing because the quicker the engraftment goes, the quicker you have your immune system back.
Re: An occasional subjective stem cell transplant account
Fred,
I agree with Ian that walking is important. In my case, I was mostly treated as an outpatient, so I had to walk from a hospital parking lot up to the bone marrow transplant unit every day. I was so tired and found this to be difficult, but I am sure it helped in my recovery. (My dear family helped me on a daily basis to get to the hospital.) A friend of mine, who had been in the inpatient unit ahead of me (and I was there for about two days) is a keen cyclist and had posted a picture of himself cycling right after the transplant, on the unit's bulletin board. We still are on a committee together.
I agree with Ian that walking is important. In my case, I was mostly treated as an outpatient, so I had to walk from a hospital parking lot up to the bone marrow transplant unit every day. I was so tired and found this to be difficult, but I am sure it helped in my recovery. (My dear family helped me on a daily basis to get to the hospital.) A friend of mine, who had been in the inpatient unit ahead of me (and I was there for about two days) is a keen cyclist and had posted a picture of himself cycling right after the transplant, on the unit's bulletin board. We still are on a committee together.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: An occasional subjective stem cell transplant account
Ian and Nancy - Thank you for sharing best practices from your experience. Your experience mirrors the instruction of the care team and specialist. Like you, they have emphasized how crucial activity, rigorous oral hygiene, and trying to eat are. The weight of "lived" experience by both of you certainly heightens my attention to these items.
I've found a recumbent bike on the floor and had my initial foray yesterday.
In keeping with the more subjective tone of the thread I find myself Day -1 from transplant. Today is a "rest" day. Day -2, yesterday, I received the infusion of the high dose melphalan. The seething forebodding prior to admission faded to the background and my friend resolve emerged when faced with the doing, absorbing the care instructions, and arranging the practical side of an extended stay. This firming of resolve led me to consider how best to internally prepare for the days ahead when more severe side effects are to be expected. I've fostered an intention to mimic athletes who prepare for a difficult event by envisioning the difficulties to be faced by mentally practicing their response, then mentally standing witness to a successful outcome. I see myself weakened, nauseated perhaps, without an intention to move. I "see" a response that overrides these impulses and, by dint of will, dresses, moves, and does what is required to see the matter through.
Hopefully this mental preparation will hold me in good stead.
Resolved,
Fred
I've found a recumbent bike on the floor and had my initial foray yesterday.
In keeping with the more subjective tone of the thread I find myself Day -1 from transplant. Today is a "rest" day. Day -2, yesterday, I received the infusion of the high dose melphalan. The seething forebodding prior to admission faded to the background and my friend resolve emerged when faced with the doing, absorbing the care instructions, and arranging the practical side of an extended stay. This firming of resolve led me to consider how best to internally prepare for the days ahead when more severe side effects are to be expected. I've fostered an intention to mimic athletes who prepare for a difficult event by envisioning the difficulties to be faced by mentally practicing their response, then mentally standing witness to a successful outcome. I see myself weakened, nauseated perhaps, without an intention to move. I "see" a response that overrides these impulses and, by dint of will, dresses, moves, and does what is required to see the matter through.
Hopefully this mental preparation will hold me in good stead.
Resolved,
Fred
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
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