Saturday, January 31, 2009
Etc.
I posted a comment in response to a comment in my previous post. It has some info I'd like you all to have, so may I please direct you there?
Thursday, January 29, 2009
Yesterday
Actually, not yesterday, but the day-before-yesterday. That was Tuesday the 27th, when I did the Collection/Harvest.
First, the GREAT news: my body produced (they collected) enough stem cells in one go that I don’t have to do it again!!! That means two things:
1. No more G-shots (“Growth Factor”)! The injections were no problem, but the effect was to make me really tired (why I didn’t write yesterday) and somewhat achy; give me some headaches and intense but passing lower back pain; and – worst of all – greatly increase the number of white blood cells in my body (with an auto immune disease, they are, essentially, an enemy).
2. No more four-plus hour stays at the SCCA! Wasn’t bad, got to be in a bed the whole time. I scared them once and was the center of attention when my BP dropped to 80 over 53! I felt no different since I was drowsy the whole time…. Anyway, they slowed the process (basically blood going out through one port; being processed in a centrifuge; and what isn’t needed coming back in through the other port.) I drank more, ate more, and it quickly went back to where the doc was comfortable. But of course it took longer, but fortunately when they finally called just before 8 pm, the news actually made me HAPPY – really happy.
(Maybe eventually I’ll be so back to normal that I won’t use so many parentheses or italic, bold, etc….)
Now I go in for a couple days, mostly just for blood work. But I’m finished! - until I go into UW hospital “next week” – probably the 4th. I’ll for sure be there 21 days – perhaps longer - beginning with six days of chemo to obliterate my bad immune system. On Day 7, my harvested stem cells will be transplanted.
That becomes Day 0. I’ve been encouraged to celebrate this as my second birthday. Then the days are counted until my new, baby immune system engrafts: 10-28 days.
Not sure what my restrictions will be on visitors. Will let you know. But the other GREAT thing about Tues. was that the mail included two cards! Thank-you to each one of you who have posted comments and/or become a Follower of my blog; sent me an email; or written a card – I may not respond but please know that it means a lot to me. In Shannon’s words, it is something that makes me happy.
First, the GREAT news: my body produced (they collected) enough stem cells in one go that I don’t have to do it again!!! That means two things:
1. No more G-shots (“Growth Factor”)! The injections were no problem, but the effect was to make me really tired (why I didn’t write yesterday) and somewhat achy; give me some headaches and intense but passing lower back pain; and – worst of all – greatly increase the number of white blood cells in my body (with an auto immune disease, they are, essentially, an enemy).
2. No more four-plus hour stays at the SCCA! Wasn’t bad, got to be in a bed the whole time. I scared them once and was the center of attention when my BP dropped to 80 over 53! I felt no different since I was drowsy the whole time…. Anyway, they slowed the process (basically blood going out through one port; being processed in a centrifuge; and what isn’t needed coming back in through the other port.) I drank more, ate more, and it quickly went back to where the doc was comfortable. But of course it took longer, but fortunately when they finally called just before 8 pm, the news actually made me HAPPY – really happy.
(Maybe eventually I’ll be so back to normal that I won’t use so many parentheses or italic, bold, etc….)
Now I go in for a couple days, mostly just for blood work. But I’m finished! - until I go into UW hospital “next week” – probably the 4th. I’ll for sure be there 21 days – perhaps longer - beginning with six days of chemo to obliterate my bad immune system. On Day 7, my harvested stem cells will be transplanted.
That becomes Day 0. I’ve been encouraged to celebrate this as my second birthday. Then the days are counted until my new, baby immune system engrafts: 10-28 days.
Not sure what my restrictions will be on visitors. Will let you know. But the other GREAT thing about Tues. was that the mail included two cards! Thank-you to each one of you who have posted comments and/or become a Follower of my blog; sent me an email; or written a card – I may not respond but please know that it means a lot to me. In Shannon’s words, it is something that makes me happy.
Sunday, January 25, 2009
She's Not There...
I'm back home! We tried the hospital for a couple days, but I didn't seem to need it & home is much more accomodating in so man ways. We are playing by ear the harvesting, scheduled for Tuesday. Inpatient is always an option.
Was good to visit the floor whivh will be my home for at least 3 weeks. Now I know better how to prepare and what to bring.
Was good to visit the floor whivh will be my home for at least 3 weeks. Now I know better how to prepare and what to bring.
Thursday, January 22, 2009
I’ll Be at UW Hospital Tomorrow
At our meeting Wednesday, we decided to go with my doc’s recommendation to do the growth factor, etc. drugs as well as the collection—as an inpatient, meaning that tomorrow at 9 am, I’ll be admitted to UW hospital for about a week. (Then I’ll be home for about a week and then I’ll start my 3-4 week stay for the actual transplant.)
This part of the process can leave people pretty tired and the doc saw that I don’t have many reserves so she felt it would be better all around to play it safe and be an inpatient. She also told us the GREAT news that immediately after the long hospital stay it would be just fine with her that we came back to our own house! (I.e., we don’t need to stay in Seattle!)
Got the line placed today. Not too bad, but I’m ready to sleep, though I’ve kind of been doing that all day.
This part of the process can leave people pretty tired and the doc saw that I don’t have many reserves so she felt it would be better all around to play it safe and be an inpatient. She also told us the GREAT news that immediately after the long hospital stay it would be just fine with her that we came back to our own house! (I.e., we don’t need to stay in Seattle!)
Got the line placed today. Not too bad, but I’m ready to sleep, though I’ve kind of been doing that all day.
Monday, January 19, 2009
And So It Begins - For Real
I’ve just watched a broadcast of Dr. Martin Luther King’s “I Have a Dream” speech. Made me teary a couple times to think what he represents and how far our nation has finally come. (If you’ll forgive the unsolicited political blah-blah, I’m so glad Obama, not McCain, is our new prez!)
It also reminded me that though this huge process consumes most of my thoughts and my time, I am just one person. Though I hope to still have an impact – however small – on the world: if this transplant is successful, it will help pave the way for others with my disease; and, I really want to get back out in the world as a volunteer – that has been part of my identity forever, I guess. So, onward…
Friday I got the call that my Central Line placement appointment was moved up from the 27th to this Thursday, the 22nd. FYI, this line will be “my friend” for the next few months and will be used for everything from simple blood tests to giving me nutrition if I’m not taking in enough. Its first use will be infusions of stem cell growth-stimulating drugs followed by collection of those cells, so with its placement comes a firmer timeline that puts me on target to enter University Hospital on about Monday, February 2 and begin 6 days of chemo. (On the 7th day my collected stem cells will be infused and we’ll wait for my new immune system to “engraft.” But I’m getting ahead of myself…)
The next ten days or so will be busy with trips to SCCA. Rick will be my main driver/caregiver (except tomorrow Deb takes me to the UW for a swallowing/speech evaluation) since along with the procedures we’ll be receiving info we both need to know.
Also, this is not the only HUGE thing happening in our lives.
So there’s a lot on our plate.
It also reminded me that though this huge process consumes most of my thoughts and my time, I am just one person. Though I hope to still have an impact – however small – on the world: if this transplant is successful, it will help pave the way for others with my disease; and, I really want to get back out in the world as a volunteer – that has been part of my identity forever, I guess. So, onward…
Friday I got the call that my Central Line placement appointment was moved up from the 27th to this Thursday, the 22nd. FYI, this line will be “my friend” for the next few months and will be used for everything from simple blood tests to giving me nutrition if I’m not taking in enough. Its first use will be infusions of stem cell growth-stimulating drugs followed by collection of those cells, so with its placement comes a firmer timeline that puts me on target to enter University Hospital on about Monday, February 2 and begin 6 days of chemo. (On the 7th day my collected stem cells will be infused and we’ll wait for my new immune system to “engraft.” But I’m getting ahead of myself…)
The next ten days or so will be busy with trips to SCCA. Rick will be my main driver/caregiver (except tomorrow Deb takes me to the UW for a swallowing/speech evaluation) since along with the procedures we’ll be receiving info we both need to know.
Also, this is not the only HUGE thing happening in our lives.
- Robin leaves for New Zealand (!) on February 8: she’ll be studying there for a school year as part of the UW exchange program.
- AND Darren, having finished his degree in December (BFA in Graphic Design), will be moving up from SoCal to live with us – to help as much as needed and to find work up here. This will happen as soon as he can work out how to get himself and his stuff up here as cheaply as possible.
So there’s a lot on our plate.
Thursday, January 15, 2009
I’m in!
Yesterday was my final day of Testing/Evaluation, and everything looks good for me to go ahead!
The next step is Stem Cell Collection and to do that I need to have a Central Line placed in my chest and the first date the docs were given was January 27. They and I are hoping to do it sooner – ASAP, really.
The next step is Stem Cell Collection and to do that I need to have a Central Line placed in my chest and the first date the docs were given was January 27. They and I are hoping to do it sooner – ASAP, really.
Saturday, January 10, 2009
But wait! There’s MORE!
Seems like forever already: 8 trips in 11 days.
Yesterday set the record for the latest time leaving the SCCA (not total hours - that's still Wednesday, 12/31, when Rick and I were there from 8 am until 3:30 pm). After more than 2 hours in the MRI machine (I was so tired that I slept through part of it), and yet another urine test, my sister and I finally left - I think it was close to 7 pm. The good news: NO TRAFFIC. Thank you, Deb, for being there for me!
But I'm scheduled for yet another screening test. So I have appointments Monday and Wednesday, and they’re trying to schedule a couple things at UW.
Yesterday set the record for the latest time leaving the SCCA (not total hours - that's still Wednesday, 12/31, when Rick and I were there from 8 am until 3:30 pm). After more than 2 hours in the MRI machine (I was so tired that I slept through part of it), and yet another urine test, my sister and I finally left - I think it was close to 7 pm. The good news: NO TRAFFIC. Thank you, Deb, for being there for me!
But I'm scheduled for yet another screening test. So I have appointments Monday and Wednesday, and they’re trying to schedule a couple things at UW.
Wednesday, January 7, 2009
Adding others...
I meant to say something about this. you are welcome to invite others to view this, but I'd appreciate you doing what Debbie did - just ask me. (Hello. Lori & Bill!) Eventually I may not care, but for now I'll be a gate keeper.
Evaluation Phase
My first appointment was Tuesday, December 30 at the SCCA.
Then – it feels like suddenly, though I have waited so long – I am immersed in a new world: of Stem Cell/Bone Marrow transplants and the SCCA – where “cancer” is an everyday word; blood tests are the norm; bald heads on women are not unusual: the Gift Shop sells hats; filling out a Respiratory Symptom Screening is the first order of ever day and people with any symptoms are politely asked to wait outside; and I am surrounded by cheerful professionals whose primary goal is…ME!
So far I have been taken to the SCCA five times – four times by Rick; Robin drove once & Sandy Hamilton gets a turn the next two days – for the Evaluation phase: a series of medical tests to determine whether my body is up to the challenge of the chemo-therapy. This was how Rick got to spend 3 days of his Christmas vacation. But it was invaluable because he could lift me onto various tables and chairs for exams, x-rays, & measurements AND he also was becoming familiar with our new environment.
We met members of "my team" – nurses, docs, nutritionists, etc. – and verified that my heart, lungs, mouth, & female organs are in good shape. All that’s left, I think are, more blood work & meetings (today); an Echocardiogram (tomorrow); and an MRI (Friday). Or more could be added.
But I’m still, I think, looking at a meeting early next week to go over my results and schedule the next phase – stimulating growth and then harvesting stem cells from my blood.
Then – it feels like suddenly, though I have waited so long – I am immersed in a new world: of Stem Cell/Bone Marrow transplants and the SCCA – where “cancer” is an everyday word; blood tests are the norm; bald heads on women are not unusual: the Gift Shop sells hats; filling out a Respiratory Symptom Screening is the first order of ever day and people with any symptoms are politely asked to wait outside; and I am surrounded by cheerful professionals whose primary goal is…ME!
So far I have been taken to the SCCA five times – four times by Rick; Robin drove once & Sandy Hamilton gets a turn the next two days – for the Evaluation phase: a series of medical tests to determine whether my body is up to the challenge of the chemo-therapy. This was how Rick got to spend 3 days of his Christmas vacation. But it was invaluable because he could lift me onto various tables and chairs for exams, x-rays, & measurements AND he also was becoming familiar with our new environment.
We met members of "my team" – nurses, docs, nutritionists, etc. – and verified that my heart, lungs, mouth, & female organs are in good shape. All that’s left, I think are, more blood work & meetings (today); an Echocardiogram (tomorrow); and an MRI (Friday). Or more could be added.
But I’m still, I think, looking at a meeting early next week to go over my results and schedule the next phase – stimulating growth and then harvesting stem cells from my blood.
Monday, January 5, 2009
The First Post & Timeline
Welcome to my blog! Thank-you for sharing this journey with me.
First order of business: an explanation of what a Stem Cell Transplant is and an overview of the timeline. This segment is pretty much “just the facts” because I fell an urgency to get those broadcast.
My insurance finally approved my participation in a study on the effect of a Stem Cell Transplant on debilitating autoimmune diseases that have been unresponsive to other treatment. The purpose of the transplant is to give me a new immune system – using stem cells from my own blood – after using chemotherapy to destroy the old one, which has turned against me. Because this treatment is usually for cancer, my care will be coordinated through Seattle Cancer Care Alliance (SCCA) and the Fred Hutchison Cancer Center at the UW.
In general, treatment involves around a month of preparation, a month in the hospital, and a month living in Seattle. (I’d been told I’ll then be living with a “baby immune system”: I understood more what that meant when I learned that after about a year, my immune system would be mature enough for me to be re-immunized with all the usual vaccinations.)
First, a series of appointments and tests to make sure my body, soul, & circle of caregivers are ready for this procedure. My first appointment at SCCA was December 30. By mid January, if all is OK, I will begin a few days of infusions of something to stimulate stem cell growth; have a “central line” (semi-permanent in/out IV) placed in my chest, where it will remain for a few months. Its first use will be to harvest stem cells from my blood, which will then be frozen for several days.
Around the beginning of February, I will be admitted to UW hospital/Fred Hutch, where I’ll receive several days of chemotherapy – complete with all the typical side effects, including nausea and hair loss – to wipe out my immune system. Next, my stem cells will be re-infused and for the next few weeks I’ll be closely monitored while waiting for my new immune system to graft and grow. My body will of course be at huge risk for infection so I’ll be in the Transplant Ward at Fred Hutch, receiving antibiotics and whatever else I need through the central line. If all goes well, I’ll be released - to live within 15 minutes of the hospital for the first month when the infection risk is still quite high.
So for this month (March-ish), I will need to reside in Seattle, and will require a caregiver with me 24/7 to take my temperature, drive me to the hospital if…, etc. Those dear people must have a flu shot; take a class or two at SCCA; be familiar with driving my van; know the route to UW hospital; and be able to give up part of their lives/routines to take care of me in Seattle. So far I have lined up a few people to share the load with Rick, but it’s been hard for me to ask.
First order of business: an explanation of what a Stem Cell Transplant is and an overview of the timeline. This segment is pretty much “just the facts” because I fell an urgency to get those broadcast.
My insurance finally approved my participation in a study on the effect of a Stem Cell Transplant on debilitating autoimmune diseases that have been unresponsive to other treatment. The purpose of the transplant is to give me a new immune system – using stem cells from my own blood – after using chemotherapy to destroy the old one, which has turned against me. Because this treatment is usually for cancer, my care will be coordinated through Seattle Cancer Care Alliance (SCCA) and the Fred Hutchison Cancer Center at the UW.
In general, treatment involves around a month of preparation, a month in the hospital, and a month living in Seattle. (I’d been told I’ll then be living with a “baby immune system”: I understood more what that meant when I learned that after about a year, my immune system would be mature enough for me to be re-immunized with all the usual vaccinations.)
First, a series of appointments and tests to make sure my body, soul, & circle of caregivers are ready for this procedure. My first appointment at SCCA was December 30. By mid January, if all is OK, I will begin a few days of infusions of something to stimulate stem cell growth; have a “central line” (semi-permanent in/out IV) placed in my chest, where it will remain for a few months. Its first use will be to harvest stem cells from my blood, which will then be frozen for several days.
Around the beginning of February, I will be admitted to UW hospital/Fred Hutch, where I’ll receive several days of chemotherapy – complete with all the typical side effects, including nausea and hair loss – to wipe out my immune system. Next, my stem cells will be re-infused and for the next few weeks I’ll be closely monitored while waiting for my new immune system to graft and grow. My body will of course be at huge risk for infection so I’ll be in the Transplant Ward at Fred Hutch, receiving antibiotics and whatever else I need through the central line. If all goes well, I’ll be released - to live within 15 minutes of the hospital for the first month when the infection risk is still quite high.
So for this month (March-ish), I will need to reside in Seattle, and will require a caregiver with me 24/7 to take my temperature, drive me to the hospital if…, etc. Those dear people must have a flu shot; take a class or two at SCCA; be familiar with driving my van; know the route to UW hospital; and be able to give up part of their lives/routines to take care of me in Seattle. So far I have lined up a few people to share the load with Rick, but it’s been hard for me to ask.
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