Hi again Dianalad,
The dex can really cause one's mind to race, that's for sure! I have had that problem too. One of the funniest Beacon columns I ever read here was by Kevin Jones, a former columnist:
"Me vs. MM: Agent D," The Myeloma Beacon, May 15, 2012
I was at a needlework seminar in Victoria B.C when I read that and I just couldn't stop laughing! I would feel very inhibited on dex, when I wasn't talking a lot. It is a powerful drug. Kevin expressed that well, I thought.
Forums
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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: Diana's second stem cell transplant
Yes, Nancy, he certainly did!
"Dex rants" are ubiquitous, and completely understandable. I have a strong suspicion that most of them may have been written on, or the day after, 'Dex days."
And I don't blame any of 'em one bit. May Agent D (and all the other agents recruited for this specific job) soon be laid off for lack of work.
"Dex rants" are ubiquitous, and completely understandable. I have a strong suspicion that most of them may have been written on, or the day after, 'Dex days."
And I don't blame any of 'em one bit. May Agent D (and all the other agents recruited for this specific job) soon be laid off for lack of work.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
August 17, 2017 Update
This morning, early, I got an e-mail from my transplant coordinator, who attached a calendar (partially filled out) with the dates by which I have to have all my "pre-procedure' tests done. Woo hoo, I thought. Here we go. It's official (until someone decides differently). I go in on September 11.
Never mind that my mother isn't all that happy about the symbolism of the date, it's a good date. It only almost fits in to everybody's caretaker schedules, being a couple of weeks before the first grandbaby (my sisters, not mine, darn it) is born, a few days after my parent's 70th wedding anniversary, being somewhat convenient for my other sister who is flying down from Utah to help.
Of course, my middle daughters will be in Europe (wish I was going with them, instead), but they will be back before I get kicked loose from the transplant center, so they might come see me before they fly the rest of the way home. Or not.
I only noticed a couple of things: even though I told everybody that whatever they wanted me to do, I'd do, whenever they wanted me to do it, there was one date where I would absolutely be unavailable: September 6th (see parent's 70th wedding anniversary). So when did they schedule the 'intake' and education/consultation appointment?
Three guesses and if you need any guesses .... (sigh)
The only concession I got from 'em about that today was that they would 'release me early" so that I could get home before 3 p.m.
Well, I guess that does get me out of last minute party hassles. That's something.
Oh, and I got a call a few minutes after that e-mail from someone who said that I needed to call a specific number to arrange my cardiac tests, which needed to take place in the nuclear medicine department.
Wait. What?
She gave me a number, and that number went to a Kaiser representative in Bakersfield who only handled outside referrals in Kern County. Now, I live in Los Angeles County. True, Bakersfield is only a little further away from me, time wise, than Los Angeles, but we have a perfectly good cardiology department right in the city where I live!
So, I'm trying to untangle that. I'm definitely juggling, and I think that this is deliberate. It's God's way of making sure that my time is so taken up with figuring out when to get tests done, where to go get them, who's giving me the right info, etc., that when September 11 shows up, I can just figure that I'm done, I can take a vacation and let everybody else stress.
Never mind. It's August. I have a baby shower to finish a quilt for, and I'll get right to that, as soon as I call the oncologist's office again, figure out whether someone who wears dentures really has to get a dental clearance, argue about whether the bone marrow biopsy they require will be done in the doctor's office (no, it won't!) or as an outpatient thing where they can put me out for it (oh, yes, that's what will happen, period).
Oh, and then there is that cardiology thing, and making sure that on Monday when I get my blood draw for my infusion that they do not take the blood for the pre-transplant panel even though the order is in for it.
Ok, that's enough. I have a 'Sunbonnet Girl" quilt to finish. Yes. I do.
Right after this next phone call.
This morning, early, I got an e-mail from my transplant coordinator, who attached a calendar (partially filled out) with the dates by which I have to have all my "pre-procedure' tests done. Woo hoo, I thought. Here we go. It's official (until someone decides differently). I go in on September 11.
Never mind that my mother isn't all that happy about the symbolism of the date, it's a good date. It only almost fits in to everybody's caretaker schedules, being a couple of weeks before the first grandbaby (my sisters, not mine, darn it) is born, a few days after my parent's 70th wedding anniversary, being somewhat convenient for my other sister who is flying down from Utah to help.
Of course, my middle daughters will be in Europe (wish I was going with them, instead), but they will be back before I get kicked loose from the transplant center, so they might come see me before they fly the rest of the way home. Or not.
I only noticed a couple of things: even though I told everybody that whatever they wanted me to do, I'd do, whenever they wanted me to do it, there was one date where I would absolutely be unavailable: September 6th (see parent's 70th wedding anniversary). So when did they schedule the 'intake' and education/consultation appointment?
Three guesses and if you need any guesses .... (sigh)
The only concession I got from 'em about that today was that they would 'release me early" so that I could get home before 3 p.m.
Well, I guess that does get me out of last minute party hassles. That's something.
Oh, and I got a call a few minutes after that e-mail from someone who said that I needed to call a specific number to arrange my cardiac tests, which needed to take place in the nuclear medicine department.
Wait. What?
She gave me a number, and that number went to a Kaiser representative in Bakersfield who only handled outside referrals in Kern County. Now, I live in Los Angeles County. True, Bakersfield is only a little further away from me, time wise, than Los Angeles, but we have a perfectly good cardiology department right in the city where I live!
So, I'm trying to untangle that. I'm definitely juggling, and I think that this is deliberate. It's God's way of making sure that my time is so taken up with figuring out when to get tests done, where to go get them, who's giving me the right info, etc., that when September 11 shows up, I can just figure that I'm done, I can take a vacation and let everybody else stress.
Never mind. It's August. I have a baby shower to finish a quilt for, and I'll get right to that, as soon as I call the oncologist's office again, figure out whether someone who wears dentures really has to get a dental clearance, argue about whether the bone marrow biopsy they require will be done in the doctor's office (no, it won't!) or as an outpatient thing where they can put me out for it (oh, yes, that's what will happen, period).
Oh, and then there is that cardiology thing, and making sure that on Monday when I get my blood draw for my infusion that they do not take the blood for the pre-transplant panel even though the order is in for it.
Ok, that's enough. I have a 'Sunbonnet Girl" quilt to finish. Yes. I do.
Right after this next phone call.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
August 18, 2017 Update
Whew, what a difference a day can make!
From confusion to 'OK, let's do this." I like it.
One transplant coordinator from Kaiser, another from the City of Hope, and they got together. All my tests are scheduled, I know what they are and where they are going to be done.
I'm a little worried about doing a pulmonary function test on the day I take the dex, but, hey, I won't have asthma!
So, I'm taking a deep breath (and a nap – that Pomalyst even on the lower dose does quite a job on the energy level) and watching the stress level do a nose dive. I'm good. Next week is my birthday, the week following that is my 'week off' of treatment and all my tests will have been done.
I think I'll take a day or so of that week and go to the beach. I'll take my smart phone with my library of audio books, my al fresco painting kit that I keep in the trunk of the car, and/or some knitting. I may even go splash in the water.
Or wade deeper and look for a shark to punch in the nose. Depends entirely on my mood.
Whew, what a difference a day can make!
From confusion to 'OK, let's do this." I like it.
One transplant coordinator from Kaiser, another from the City of Hope, and they got together. All my tests are scheduled, I know what they are and where they are going to be done.
I'm a little worried about doing a pulmonary function test on the day I take the dex, but, hey, I won't have asthma!
So, I'm taking a deep breath (and a nap – that Pomalyst even on the lower dose does quite a job on the energy level) and watching the stress level do a nose dive. I'm good. Next week is my birthday, the week following that is my 'week off' of treatment and all my tests will have been done.
I think I'll take a day or so of that week and go to the beach. I'll take my smart phone with my library of audio books, my al fresco painting kit that I keep in the trunk of the car, and/or some knitting. I may even go splash in the water.
Or wade deeper and look for a shark to punch in the nose. Depends entirely on my mood.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
Diana,
I also went to City Of Hope for a transplant. I am now Day +66. Since you had your first transplant there, you probably already know what to expect for the most part.
I just wanted to add that I had my pulmonary function test (PFT) there. It was really very minimal in comparison to the one I had where I live before my harvest two years ago.
All the tests at City Of Hope went really smooth. The one that I thought would be the fastest was the heart ultrasound. They took 64 images. All the valves and arteries at different positions. They asked me what kind of music I wanted to listen to because it would take a while. It was the longest test. And the technician was able to tell me how it all looked.
And the intake class that they had me and my wife take was really informative. The one thing that they brought up was that they just started using special body wipes to control any bacteria issues. You have to use them about an hour after you shower. They are in a sealed bag and they warm them up. I couldn't reach all of my back so the nurse would take care of that. But you have to wipe down your whole body.
Hope this helps a little.
I also went to City Of Hope for a transplant. I am now Day +66. Since you had your first transplant there, you probably already know what to expect for the most part.
I just wanted to add that I had my pulmonary function test (PFT) there. It was really very minimal in comparison to the one I had where I live before my harvest two years ago.
All the tests at City Of Hope went really smooth. The one that I thought would be the fastest was the heart ultrasound. They took 64 images. All the valves and arteries at different positions. They asked me what kind of music I wanted to listen to because it would take a while. It was the longest test. And the technician was able to tell me how it all looked.
And the intake class that they had me and my wife take was really informative. The one thing that they brought up was that they just started using special body wipes to control any bacteria issues. You have to use them about an hour after you shower. They are in a sealed bag and they warm them up. I couldn't reach all of my back so the nurse would take care of that. But you have to wipe down your whole body.
Hope this helps a little.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Diana's second stem cell transplant
Thanks, Castaway.
Y'know, I honestly am having problems remembering everything about the last one. I remember the tests, and they seem to be about the same, except I do remember that last time all I had to do, cardiology-wise, was a stress test and an EKG.
So this long winded test I get to do on Monday that involves me not having anything with caffeine in it for 24 hours, and having to fast for four hours before the procedure, and it taking three hours?
That's new. Should be interesting. Or something.
I'm not having to do the Neupogen shots and stem cell harvest this time, though, and that's different. As well, they'll be putting the central line in on 'admission day,' rather than several days before.
I'm hoping that, unlike last time, I'm going to be very, very bored for three weeks.
Last time? I was many things, but I don't remember being 'bored.' Blocking two weeks from my memory because I was too sick to give a hoot, yes, but not 'bored!'
Y'know, I honestly am having problems remembering everything about the last one. I remember the tests, and they seem to be about the same, except I do remember that last time all I had to do, cardiology-wise, was a stress test and an EKG.
So this long winded test I get to do on Monday that involves me not having anything with caffeine in it for 24 hours, and having to fast for four hours before the procedure, and it taking three hours?
That's new. Should be interesting. Or something.
I'm not having to do the Neupogen shots and stem cell harvest this time, though, and that's different. As well, they'll be putting the central line in on 'admission day,' rather than several days before.
I'm hoping that, unlike last time, I'm going to be very, very bored for three weeks.
Last time? I was many things, but I don't remember being 'bored.' Blocking two weeks from my memory because I was too sick to give a hoot, yes, but not 'bored!'
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
Monday update; eclipse day, birth day, busy day!
Today I had a 'nuclear stress test,' that was completely new to me; I didn't have this for the last transplant.
It was, quite frankly, a breeze. Dunno if they found anything horrific, but since they didn't call an ambulance, I believe I 'passed." Or something. I'll admit that I was a bit worried, since the side effects of the Kyprolis and Pomalyst are still knocking me for a loop.
What I'm having problems with is the timing. I think the universe is having a joke, albeit a minor one, on me. I was told yesterday that since they would be pumping a radioactive isotope into me while they took lots and lots of pictures, that I had to stay away from pregnant women and children for 24 hours after the test.
So.
When does my niece call her mom and tell her that her water broke?
Yep, this morning, early. I have just received word that 'we have a baby,' at 4 p.m. And I can't go see them! (sniff) Something tells me that I would not be welcome at the birthing center this afternoon. Anyway, we have an eclipse (only 70% where I live, but I got to see it), a baby, and my first pre-transplant test down. Busy, busy day.
Well, tomorrow it's 'pulmonary function' day. On dex day. Now I'm no doc, but it seems to me that perhaps a pulmonary function test on the day I take 40 mg of dexamethasone might skew the test? Oh, well. At least I won't be having an asthma attack. My blood pressure will be out of control, but I'll breathe well.
Now why do I suddenly feel like putting "The 1812 Overture" on my ITunes list?
Today I had a 'nuclear stress test,' that was completely new to me; I didn't have this for the last transplant.
It was, quite frankly, a breeze. Dunno if they found anything horrific, but since they didn't call an ambulance, I believe I 'passed." Or something. I'll admit that I was a bit worried, since the side effects of the Kyprolis and Pomalyst are still knocking me for a loop.
What I'm having problems with is the timing. I think the universe is having a joke, albeit a minor one, on me. I was told yesterday that since they would be pumping a radioactive isotope into me while they took lots and lots of pictures, that I had to stay away from pregnant women and children for 24 hours after the test.
So.
When does my niece call her mom and tell her that her water broke?
Yep, this morning, early. I have just received word that 'we have a baby,' at 4 p.m. And I can't go see them! (sniff) Something tells me that I would not be welcome at the birthing center this afternoon.
Anyway, we have an eclipse (only 70% where I live, but I got to see it), a baby, and my first pre-transplant test down. Busy, busy day. Well, tomorrow it's 'pulmonary function' day. On dex day. Now I'm no doc, but it seems to me that perhaps a pulmonary function test on the day I take 40 mg of dexamethasone might skew the test? Oh, well. At least I won't be having an asthma attack. My blood pressure will be out of control, but I'll breathe well.
Now why do I suddenly feel like putting "The 1812 Overture" on my ITunes list?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
Update - August 22, 2017
It's Tuesday. Dex day. Which, as many of you who also deal with 'dex days,' can be crazy. At the infusion center, the nurses and I call it 'squirrel day,' because unless I see at least one little critter to which I can point and call "Look! A squirrel!" my whole day is ruined. We all have a good laugh when I can do the 'point and exclaim' routine.
I also had the pulmonary function test, which according to the technician looks OK, but a pulmonologist will have to look at it...
The thing is, she gave me an albuterol inhalation treatment to see if my lung function improved as a result. It did, sorta. Four (4) percent.
Now imagine, if you will, me already dealing with dex, which messes with my blood pressure (BP) and for which I double up my BP medications (on the advice of the doctor) plus an albuterol inhalation treatment. Not an inhaler with the two puffs, the full "plug in the machine and breathe the stuff in 'till it's gone" treatment. Albuterol makes me very shaky anyway. I hate the stuff. I use it when I have to, but you can bet I don't try to do anything that requires a steady hand afterwards. Combine that with 40 mg of dexamethasone?
Boy, howdy.
My blood pressure went from 145/60 (which is pretty good for Tuesdays) to 90/40. I got quite a case of the 'blind staggers' when I tried standing up and walking to the effusion center. By the time I was settled in, I started feeling better and my BP came in at 112/60. By the end of the treatment infusion it was back up to 145/60.
Tomorrow it will be my 'normal,' which is between 125 to 135/ 60 to 80. I give up.
Oh, I bought spray paint for my hair. Tomorrow I'll have blue spikes. I think that pink will be for the weekend, and if I mix 'em together I'll get purple the day I have to turn in the 24 hour urine test.
I apologize for the detailed narration and almost daily updates, but y'know what? I didn't write any of this stuff down for my first transplant, and now I can't remember (chemo brain and the natural disinclination to remember stuff one would rather didn't happen) everything. So these posts are as much, if not more, about ME remembering what this was like than it is reporting to my peers in here. So, I'm being selfish, using up bandwidth and boring people
And I really want to remember the day of the Great American Eclipse. I mean, who could make up stuff like that?
It's Tuesday. Dex day. Which, as many of you who also deal with 'dex days,' can be crazy. At the infusion center, the nurses and I call it 'squirrel day,' because unless I see at least one little critter to which I can point and call "Look! A squirrel!" my whole day is ruined. We all have a good laugh when I can do the 'point and exclaim' routine.
I also had the pulmonary function test, which according to the technician looks OK, but a pulmonologist will have to look at it...
The thing is, she gave me an albuterol inhalation treatment to see if my lung function improved as a result. It did, sorta. Four (4) percent.
Now imagine, if you will, me already dealing with dex, which messes with my blood pressure (BP) and for which I double up my BP medications (on the advice of the doctor) plus an albuterol inhalation treatment. Not an inhaler with the two puffs, the full "plug in the machine and breathe the stuff in 'till it's gone" treatment. Albuterol makes me very shaky anyway. I hate the stuff. I use it when I have to, but you can bet I don't try to do anything that requires a steady hand afterwards. Combine that with 40 mg of dexamethasone?
Boy, howdy.
My blood pressure went from 145/60 (which is pretty good for Tuesdays) to 90/40. I got quite a case of the 'blind staggers' when I tried standing up and walking to the effusion center. By the time I was settled in, I started feeling better and my BP came in at 112/60. By the end of the treatment infusion it was back up to 145/60.
Tomorrow it will be my 'normal,' which is between 125 to 135/ 60 to 80. I give up.
Oh, I bought spray paint for my hair. Tomorrow I'll have blue spikes. I think that pink will be for the weekend, and if I mix 'em together I'll get purple the day I have to turn in the 24 hour urine test.
I apologize for the detailed narration and almost daily updates, but y'know what? I didn't write any of this stuff down for my first transplant, and now I can't remember (chemo brain and the natural disinclination to remember stuff one would rather didn't happen) everything. So these posts are as much, if not more, about ME remembering what this was like than it is reporting to my peers in here. So, I'm being selfish, using up bandwidth and boring people
And I really want to remember the day of the Great American Eclipse. I mean, who could make up stuff like that?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
Ok, my birthday is coming to a close. I had a birthday cupcake from a box of Hostess cupcakes I bought from Walmart a few days ago). My folks and I went to Sizzler for lunch, and while we were gone UPS attempted to deliver my birthday present from my Utah daughters. Nobody was home to sign for it, so they'll try to deliver it tomorrow.
Finally got the baby quilt sorta bound. Will finish it in the morning, just before I have to go get more blood tests in preparation for the bone marrow biopsy that I will have next week. Sometime. I get to figure out how to separate out the tests they want for that from the tests they want to take after I deliver the 24-hour urine test, on Monday.
Tomorrow I get the MRI. That leaves just the bone marrow biopsy and a dental clearance form that they (the mysterious 'they,' a committee of anonymous folks who make all the decisions for things over which, I am convinced, they have absolutely no experience at all, but when 'they' speak, that's it!) have decided I must have.
Never mind that I store my teeth over night in Polident and a pretty white plastic box, they (see description) have decided that I must visit my dentist and have him sign off that I don't need any dental work.
Never mind. Little frustrations either allow us to practice for the big ones, or else they are stress relievers, like little earthquakes are supposed to ease the geological stress so that the 'big one' isn't so big...and I did get to my favorite quilt shop, got a fantastic discount ('cause it's my birthday, donchaknow) and got all the stuff I need to make ... another baby quilt!
I figure that what with the new quilt stuff, a new pattern to knit, some bright blue hair spray, and the only b-day present i actually got today, I'm all set. I mean, who could go wrong with a really cute zippered floral pill organizer? It's small, it's pretty, doesn't look anything at all like a pill box. Shoot, with my chemo brain I'll probably forget that's what it is and stress out over where I put the Pomalyst.
Family stuff. My dog hates my brother, the cat likes to bowl the dog over now that she is bigger than he is, Mom has a stair lift that scares both animals because she tends to run over them with it, Dad just got a new cane that he teases the dog with, and the dog is not amused.
I think, all things considered, I had a pretty good b-day, missing presents and frantic phone calls to my transplant coordinator and all. There's just too much to laugh about, y'know?
And i'll get my present tomorrow, and dinner with my son, and a handmade bracelet from my daughter who does that sort of thing for lots of money, and I can watch my folks tease the animals who tease each other.
Works for me.
Finally got the baby quilt sorta bound. Will finish it in the morning, just before I have to go get more blood tests in preparation for the bone marrow biopsy that I will have next week. Sometime. I get to figure out how to separate out the tests they want for that from the tests they want to take after I deliver the 24-hour urine test, on Monday.
Tomorrow I get the MRI. That leaves just the bone marrow biopsy and a dental clearance form that they (the mysterious 'they,' a committee of anonymous folks who make all the decisions for things over which, I am convinced, they have absolutely no experience at all, but when 'they' speak, that's it!) have decided I must have.
Never mind that I store my teeth over night in Polident and a pretty white plastic box, they (see description) have decided that I must visit my dentist and have him sign off that I don't need any dental work.
Never mind. Little frustrations either allow us to practice for the big ones, or else they are stress relievers, like little earthquakes are supposed to ease the geological stress so that the 'big one' isn't so big...and I did get to my favorite quilt shop, got a fantastic discount ('cause it's my birthday, donchaknow) and got all the stuff I need to make ... another baby quilt!
I figure that what with the new quilt stuff, a new pattern to knit, some bright blue hair spray, and the only b-day present i actually got today, I'm all set. I mean, who could go wrong with a really cute zippered floral pill organizer? It's small, it's pretty, doesn't look anything at all like a pill box. Shoot, with my chemo brain I'll probably forget that's what it is and stress out over where I put the Pomalyst.
Family stuff. My dog hates my brother, the cat likes to bowl the dog over now that she is bigger than he is, Mom has a stair lift that scares both animals because she tends to run over them with it, Dad just got a new cane that he teases the dog with, and the dog is not amused.
I think, all things considered, I had a pretty good b-day, missing presents and frantic phone calls to my transplant coordinator and all. There's just too much to laugh about, y'know?
And i'll get my present tomorrow, and dinner with my son, and a handmade bracelet from my daughter who does that sort of thing for lots of money, and I can watch my folks tease the animals who tease each other.
Works for me.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Diana's second stem cell transplant
Diana, keep writing, we are cheering you on. You know how much these details help us, plus the chance to send morale boosting. You are doing great!
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Hummingbird
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