Diana, you are one busy lady! Your family alone has so many aspects, let alone the lead up to the stem cell transplant. I remember doing most of those tests before mine, although not an MRI. i have just had one MRI, and it was for my other cancer!! It was a noisy event, lots of clinking, whrring, and clanking. I had the dental check up too. I think they will be looking at your jaw bones!
When I had the test for breath capacity, where you blow into a plastic device where the little balls have to be blown up to the top of the device, I was very confident. Being a bagpiper, I felt I would have lots of breath! It was actually more difficult than I thought it would be. I knew a respiratory tech from my (former) pipe band who worked at the same hospital. When I mentioned him to the tech, he got a little annoyed and said that my piping friend had crashed his wedding playing his pipes! It's a small world some days!
Good for you finishing the baby quilt. Are you knitting for the baby too? Congrats on your new addition to the family and Happy Birthday too. Hopefully by a few months you will be able to focus on the fun things in your life more.
Forums
-
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
August 26, 2017 Update
Whew.
I think I have all the 'ducks in a row' now. Had that MRI done late yesterday afternoon, and folks, I am here to report a little miracle.
They told me to show up at 4:30 p.m., and that my appointment was at 5 p.m. Now, I've had some experience with these people, and invariably "5 p.m." really means "somehwere around 6 or so".
Except yesterday, when the little hand pointed at 5 and the big hand pointed at 12, someone came out and called my name. Wait. What? Wow. (Uh, is that the little hand that points at the hours and the big hand that points at the minutes, or the other way around? Darned chemo-brain.)
So I went in and spent 45 minutes in the "tapocketa"' machine. (Anybody remember the Danny Kaye version of 'The Secret Life of Walter Mitty?", or the original Thurber story?)
All that is left now is the 24-hour urine test, some blood work, and the bone marrow biopsy. Mind you, since they had me do the pre-procedure work for that yesterday, they have until Tuesday to actually do it. And nobody has called me about when. At least I know where, now, and that's progress, right?
So, now, it's stress out and hurry up, and then two weeks of nothing to do but wait. And pack. And figure out whether my daughter (who is supposed to be my main caretaker for the first few days) has Valley fever or not.
I feel a bit like Bear River in spring flood. Y'all don't know much about Bear River, up in northern Utah / southern Idaho, but it's a river worthy of the title. Lots of good places to kayak, inner-tube, some really wild white water rides, some of them just before the whole thing spreads out into a wetlands in Cache Valley. These wetlands are beautiful; full of birds and plants of all kinds. The fishing there is spectacular, too, and the channels of clear water between the plants are clear and quiet.
Right now I'm on the river, dealing with the rapids, the short stretches of calm current, looking forward to the calm, peaceful time in the wetlands, where I can simply cruise and let the current take me quietly through.
Wondering whether I prefer the excitement of the rapids right now or the mosquitoes in the quiet swamp ahead.
At any rate, I'm hoping that the excitement dies down for a week or two.
Whew.
I think I have all the 'ducks in a row' now. Had that MRI done late yesterday afternoon, and folks, I am here to report a little miracle.
They told me to show up at 4:30 p.m., and that my appointment was at 5 p.m. Now, I've had some experience with these people, and invariably "5 p.m." really means "somehwere around 6 or so".
Except yesterday, when the little hand pointed at 5 and the big hand pointed at 12, someone came out and called my name. Wait. What? Wow. (Uh, is that the little hand that points at the hours and the big hand that points at the minutes, or the other way around? Darned chemo-brain.)
So I went in and spent 45 minutes in the "tapocketa"' machine. (Anybody remember the Danny Kaye version of 'The Secret Life of Walter Mitty?", or the original Thurber story?)
All that is left now is the 24-hour urine test, some blood work, and the bone marrow biopsy. Mind you, since they had me do the pre-procedure work for that yesterday, they have until Tuesday to actually do it. And nobody has called me about when. At least I know where, now, and that's progress, right?
So, now, it's stress out and hurry up, and then two weeks of nothing to do but wait. And pack. And figure out whether my daughter (who is supposed to be my main caretaker for the first few days) has Valley fever or not.
I feel a bit like Bear River in spring flood. Y'all don't know much about Bear River, up in northern Utah / southern Idaho, but it's a river worthy of the title. Lots of good places to kayak, inner-tube, some really wild white water rides, some of them just before the whole thing spreads out into a wetlands in Cache Valley. These wetlands are beautiful; full of birds and plants of all kinds. The fishing there is spectacular, too, and the channels of clear water between the plants are clear and quiet.
Right now I'm on the river, dealing with the rapids, the short stretches of calm current, looking forward to the calm, peaceful time in the wetlands, where I can simply cruise and let the current take me quietly through.
Wondering whether I prefer the excitement of the rapids right now or the mosquitoes in the quiet swamp ahead.
At any rate, I'm hoping that the excitement dies down for a week or two.
-
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
Well, all I can say is that I certainly remember Danny Kaye as Walter Mitty, and I also remember the "tapocketa". I'll keep that in mind next time I have to be put through some infernal medical machine!
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Diana's second stem cell transplant
August 29, 2017 Update
Quick update (though to be honest, I don't write anything that ends up being 'quick').
It's all set. I get my bone marrow biopsy tomorrow, under sedation. That's the last thing I need to do before the 'Big Meeting" on Sept. 6th, when I have my orientation.
I can do this.
My sister is dropping me off at the hospital, whereupon she is going to Joann's (to get who knows what) and go hug her week-and-a-half-old granddaughter. Then she will get me and we will go prowl the newly opened (and I do mean newly opened) Hobby Lobby that we've been looking forward to all summer.
And that's it. All done juggling ducks.
I had one question for the doctor. This is my 'week off,' except for dexamethasone, which I was supposed to take today, but I asked whether I should take it, or keep to the treatment schedule I've been working with since June. His words were "hold all treatment until transplant."
(grin)
I can do that. Shoot, give me a week to get over Pomalyst, and I may walk into that transplant center whistling Dixie and singing Hallelujah (That's Handel, not Cohen). I can hit the high notes n' everything.
Quick update (though to be honest, I don't write anything that ends up being 'quick').
It's all set. I get my bone marrow biopsy tomorrow, under sedation. That's the last thing I need to do before the 'Big Meeting" on Sept. 6th, when I have my orientation.
I can do this.
My sister is dropping me off at the hospital, whereupon she is going to Joann's (to get who knows what) and go hug her week-and-a-half-old granddaughter. Then she will get me and we will go prowl the newly opened (and I do mean newly opened) Hobby Lobby that we've been looking forward to all summer.
And that's it. All done juggling ducks.
I had one question for the doctor. This is my 'week off,' except for dexamethasone, which I was supposed to take today, but I asked whether I should take it, or keep to the treatment schedule I've been working with since June. His words were "hold all treatment until transplant."
(grin)
I can do that. Shoot, give me a week to get over Pomalyst, and I may walk into that transplant center whistling Dixie and singing Hallelujah (That's Handel, not Cohen). I can hit the high notes n' everything.
-
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
September 1, 2017 Update (Day -11)
I have all the tests done, including the clearance from the dentist, who wondered why it was necessary when I wear full dentures. He was very pleased with me, by the way.
He also took a CT scan of my skull and jaw, and mentioned that all the tiny lytic lesions that he had seen on my original CT scan, four months after I was first diagnosed, had either disappeared or had greatly diminished in size. Not that they were very big in the first place, mind you; none of the other x-rays or CT's or MRI's taken at the time saw any lytic lesions at all.
Anyway, that's it. I have all the paper work, the tests done, a wish from my transplant oncologist to 'have a good weekend,' and, yeah, nothing to do now but wait, pack, fiddle around, and get over chemo.
Let's see, pajamas - really? Do I have enough good underwear? What about? Please excuse me while I go mumble to myself a bit. Now it's a bit like trying to figure out what to pack to visit my kids in Utah, except that this particular trip isn't going to be anywhere near that much fun.
Well, I won't need hiking boots, anyway, or a big walking stick to thump on the trail to scare off the rattlesnakes, or mosquito repellent, or sunscreen (well, perhaps sunscreen; one can hope). I won't need to worry about 'Eau de Cache Valley,' which is the very fresh smell of road kill skunk. I won't need to haul an empty suitcase to fill with stuff I buy. I won't need to take extra Benadryl (diphenhydramine) for hay fever.
'druther pack the hiking boots. Can't seem to talk myself out of wishing for that.
I have all the tests done, including the clearance from the dentist, who wondered why it was necessary when I wear full dentures. He was very pleased with me, by the way.
He also took a CT scan of my skull and jaw, and mentioned that all the tiny lytic lesions that he had seen on my original CT scan, four months after I was first diagnosed, had either disappeared or had greatly diminished in size. Not that they were very big in the first place, mind you; none of the other x-rays or CT's or MRI's taken at the time saw any lytic lesions at all.
Anyway, that's it. I have all the paper work, the tests done, a wish from my transplant oncologist to 'have a good weekend,' and, yeah, nothing to do now but wait, pack, fiddle around, and get over chemo.
Let's see, pajamas - really? Do I have enough good underwear? What about? Please excuse me while I go mumble to myself a bit. Now it's a bit like trying to figure out what to pack to visit my kids in Utah, except that this particular trip isn't going to be anywhere near that much fun.
Well, I won't need hiking boots, anyway, or a big walking stick to thump on the trail to scare off the rattlesnakes, or mosquito repellent, or sunscreen (well, perhaps sunscreen; one can hope). I won't need to worry about 'Eau de Cache Valley,' which is the very fresh smell of road kill skunk. I won't need to haul an empty suitcase to fill with stuff I buy. I won't need to take extra Benadryl (diphenhydramine) for hay fever.
'druther pack the hiking boots. Can't seem to talk myself out of wishing for that.
-
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
I admire your humor and strength, Diana.
I am to be restaged in October for a second transplant. I'm still in recovery from my first (which took place last month). And honestly I cringe at the thought of a second transplant. Hoping my courage improves.
The best of luck to you. Your attitude is nothing short of amazing. God bless.
I am to be restaged in October for a second transplant. I'm still in recovery from my first (which took place last month). And honestly I cringe at the thought of a second transplant. Hoping my courage improves.
The best of luck to you. Your attitude is nothing short of amazing. God bless.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Diana's second stem cell transplant
I have to admit; I'm extremely glad that I had four years between transplants. Three of those years were really good ones (well, I can't really count the six months getting over transplant #1, and the six months of treatment getting ready for #2, though even those weren't too horrific).
I'm hoping for the same result this time; more years of a very good life, so that I can welcome my own first grandbaby (now that one of my sons has gone ahead and gotten married and everything).
In the meantime, I do have the cutest grandniece on the planet.
Actually, I have three really cute grandnieces. My sisters scored before I did. Grump.
It's a little scary, y'know? But you and I know that 'courage' is really just going ahead and doing what has to be done in spite of being scared spitless.
Y'know, I've never been one to get all gooey over Superman. Of course he can do all these amazing / astounding things. Of course he can rescue the kitten from the tree then buzz off to save the White House from being stepped on by aliens. Nothing can hurt him and he knows it.
The one who gets my admiration is the old guy with the bad back who gets a ladder, gets the cat, and has to spend the rest of the day on a hot pad because he threw his back out. Now HE'S the hero. Superman doesn't need courage. The old guy does, and he uses it.
So let's you and I follow the example of the hero with the ladder. Superman can go pose. I'll admire the guy with the heating pad and the purring kitten.
You with me?
(Of course, this does not include bone marrow biopsies. I ain't gonna prove my courage by doing them without being out like a light no matter who thinks I'm a wuss.)
I'm hoping for the same result this time; more years of a very good life, so that I can welcome my own first grandbaby (now that one of my sons has gone ahead and gotten married and everything).
In the meantime, I do have the cutest grandniece on the planet.
Actually, I have three really cute grandnieces. My sisters scored before I did. Grump.
It's a little scary, y'know? But you and I know that 'courage' is really just going ahead and doing what has to be done in spite of being scared spitless.
Y'know, I've never been one to get all gooey over Superman. Of course he can do all these amazing / astounding things. Of course he can rescue the kitten from the tree then buzz off to save the White House from being stepped on by aliens. Nothing can hurt him and he knows it.
The one who gets my admiration is the old guy with the bad back who gets a ladder, gets the cat, and has to spend the rest of the day on a hot pad because he threw his back out. Now HE'S the hero. Superman doesn't need courage. The old guy does, and he uses it.
So let's you and I follow the example of the hero with the ladder. Superman can go pose. I'll admire the guy with the heating pad and the purring kitten.
You with me?
(Of course, this does not include bone marrow biopsies. I ain't gonna prove my courage by doing them without being out like a light no matter who thinks I'm a wuss.)
-
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 find myself holding my breath as you get ready for this coming week.
I know I speak for many when I say how much I look forward to your pithy and frank posts, mixed with a bit of ironic humor. My hope and prayer for you (besides the obvious) is that you can feel some of the caring and support coming from your fellow multiple myeloma folks.
God bless and keep you, Diana.
I find myself holding my breath as you get ready for this coming week.
I know I speak for many when I say how much I look forward to your pithy and frank posts, mixed with a bit of ironic humor. My hope and prayer for you (besides the obvious) is that you can feel some of the caring and support coming from your fellow multiple myeloma folks.
God bless and keep you, Diana.
-
Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Diana's second stem cell transplant
I hope all has gone well for you Diana. Your spirit in preparation for this week has been infectious. I wish you all the best and look forward to your updates.
-
Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Diana's second stem cell transplant
September 6, 2017 Update
OK, first, thanks to all of you who have offered support on this thread. I appreciate those encouraging comments more than you know!
Now.
Today was the 'talk,' and the transplant orientation class and my appointment with my transplant doctor.
I missed the class. See, there was this big fire, the "La Tuna' fire, that roared down out of the mountains and melted the freeway signs.
OK, so that happened yesterday, or perhaps the day before. Today all that happened was that all the cars and trucks that couldn't get on the 210 freeway yesterday or the day before decided to get on it all at once today. So I was twenty minutes late for the class. Both my sister and I were frantic. Oh, no! What if they put this thing off for a week because I missed the class? What if this? What if that?
Not a fun drive down. So here we are, my sister and I, angsting all over the place, and my transplant coordinator, breezes into the office, plunks down a set of files that has to be a foot high, tells me 'Pffft, you've already been through this. I'm not worried about it. The only thing different from last time is that you have to wipe yourself down with provided wipes after you take a shower every day." (Thank you, Castaway and others, for telling me that so that I could tell her that I already knew about this.)
So, whew.
Then my transplant doctor came in, looked at all my files, stole my copy of the MRI results (including the CD with the images), told me that I now have 'nonsecretory multiple myeloma' and a 7 x 3 x 2.5 inch plasmacytoma in the back of my head. He also said that my heart and lungs are fine, that my kidneys are 'good enough,' (OK, someone tell me what 'good enough' means?) and that I would be getting the 'full dose' of melphalan next Tuesday.
He then poked at my ankles, which can actually be seen today, as opposed to the soggy balloons I've been hauling around for the last three months, listened to my heart and lungs, said 'see you next week,' and off he went.
Ohhhh, kay. Wait. I didn't intend to give him my MRI stuff! I stood there with an empty envelope and a slightly stunned feeling. The whole thing, check in to wave off, took 45 minutes.
The transplant coordinator caught up with me on the way out. She told me that were she me, she wouldn't get a 'buzz cut.' She said that 20% of transplant patients don't lose all their hair: that it WILL thin out, but that I might not go entirely bald. She said that since I have so much hair (well, I do, when it's long it breaks hairclips), I could just 'thin down to normal."
Well. Huh.
OK then.
We'll see what happens. It should be interesting, anyway, if only to me. (grin)
So, I'm home, a little flurmuggled. Nothing to do now but pack and wait.
Oh, and finally write that never to be sufficiently avoided advance health care directive that will really cause consternation among the kids, the siblings, and the parents.
Well, my dog won't care who I pick to make the decisions, right?
OK, first, thanks to all of you who have offered support on this thread. I appreciate those encouraging comments more than you know!
Now.
Today was the 'talk,' and the transplant orientation class and my appointment with my transplant doctor.
I missed the class. See, there was this big fire, the "La Tuna' fire, that roared down out of the mountains and melted the freeway signs.
OK, so that happened yesterday, or perhaps the day before. Today all that happened was that all the cars and trucks that couldn't get on the 210 freeway yesterday or the day before decided to get on it all at once today. So I was twenty minutes late for the class. Both my sister and I were frantic. Oh, no! What if they put this thing off for a week because I missed the class? What if this? What if that?
Not a fun drive down. So here we are, my sister and I, angsting all over the place, and my transplant coordinator, breezes into the office, plunks down a set of files that has to be a foot high, tells me 'Pffft, you've already been through this. I'm not worried about it. The only thing different from last time is that you have to wipe yourself down with provided wipes after you take a shower every day." (Thank you, Castaway and others, for telling me that so that I could tell her that I already knew about this.)
So, whew.
Then my transplant doctor came in, looked at all my files, stole my copy of the MRI results (including the CD with the images), told me that I now have 'nonsecretory multiple myeloma' and a 7 x 3 x 2.5 inch plasmacytoma in the back of my head. He also said that my heart and lungs are fine, that my kidneys are 'good enough,' (OK, someone tell me what 'good enough' means?) and that I would be getting the 'full dose' of melphalan next Tuesday.
He then poked at my ankles, which can actually be seen today, as opposed to the soggy balloons I've been hauling around for the last three months, listened to my heart and lungs, said 'see you next week,' and off he went.
Ohhhh, kay. Wait. I didn't intend to give him my MRI stuff! I stood there with an empty envelope and a slightly stunned feeling. The whole thing, check in to wave off, took 45 minutes.
The transplant coordinator caught up with me on the way out. She told me that were she me, she wouldn't get a 'buzz cut.' She said that 20% of transplant patients don't lose all their hair: that it WILL thin out, but that I might not go entirely bald. She said that since I have so much hair (well, I do, when it's long it breaks hairclips), I could just 'thin down to normal."
Well. Huh.
OK then.
We'll see what happens. It should be interesting, anyway, if only to me. (grin)
So, I'm home, a little flurmuggled. Nothing to do now but pack and wait.
Oh, and finally write that never to be sufficiently avoided advance health care directive that will really cause consternation among the kids, the siblings, and the parents.
Well, my dog won't care who I pick to make the decisions, right?
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Return to Treatments & Side Effects