Not much new to report, except we're nearing the finish line on the main portion of treatment, and all continues to go well. I had my last general field radiation today, my last scheduled chemo treatment and two good meetings with my doctors--who leave me feeling well cared-for and aware that there's still some work to do, both physically and emotionally.
I'll be starting the transition back to Eugene in the next couple of weeks, looking forward to visits from a couple of branches of family, thinking about work and generally getting life back to normal. The one not-so-normal part is that the Docs all agree that it would be wise to do one more round of chemo over the next few months that will be more of a systemic blast to be absolutely sure that no little speck remains anywhere. It's an aggressive approach, and I'm all for it, even if it means extending my adventures at OHSU once every three weeks through May. I'll be in Eugene most of the time, and they tell me that I'll be able to work part time and get back to my life.
But, the original offender is definitely on its last, tiny leg, and they're confident that once we're through this week and next it will be officially, completely gone. Hurrah!
Thursday, February 5, 2009
Monday, January 26, 2009
On with Week 5
Last week, I sat in my chair in the chemo clinic and listened to the inauguration, at first feeling sort of sorry for myself in a "where-were-you-when" sort of way. But as soon as those first notes of the Air & Simple Gifts began, I took a deep breath (with tears, I admit) and realized how grateful I am. Grateful to be here, to have good health insurance, to have such incredible care that is doing its job, to be looking out at snowy mountains and a green river while our nation took such a giant step. Simple gifts, indeed.
Now the hoopla is over, everyone's getting down to business again, and I'm buckling down for the last few weeks of treatment.
We've just begun week five of the six of chemo, and I'm happy to report no big changes in side effects, no surprises. I'm generally just a beat or two behind, feeling a little queasy, suddenly a super-picky eater and a teetotaler. Other than that, same old me. (And yes, I still have more than my fair share of hair on my head--my particular cocktail of chemicals lets me keep it.)
Radiation has gotten a little more involved--the good news of a few weeks ago means that we're able to start the final phase now, which means 5 outpatient procedures that each take most of a day of prodding and planning and zapping and waiting. We did the first one last friday, and while it wasn't the most enjoyable experience, Mark by my side, some good drugs and audiobooks got me through just fine.
So now, just steady marching toward February 12, which is the last scheduled day of treatment. My days have gotten surprisingly full, between various appointments, acupuncture, and the little bouts of fatigue that land me asleep on couches at one of my parents' houses.
As always, many thanks for the good thoughts,
jmb
Now the hoopla is over, everyone's getting down to business again, and I'm buckling down for the last few weeks of treatment.
We've just begun week five of the six of chemo, and I'm happy to report no big changes in side effects, no surprises. I'm generally just a beat or two behind, feeling a little queasy, suddenly a super-picky eater and a teetotaler. Other than that, same old me. (And yes, I still have more than my fair share of hair on my head--my particular cocktail of chemicals lets me keep it.)
Radiation has gotten a little more involved--the good news of a few weeks ago means that we're able to start the final phase now, which means 5 outpatient procedures that each take most of a day of prodding and planning and zapping and waiting. We did the first one last friday, and while it wasn't the most enjoyable experience, Mark by my side, some good drugs and audiobooks got me through just fine.
So now, just steady marching toward February 12, which is the last scheduled day of treatment. My days have gotten surprisingly full, between various appointments, acupuncture, and the little bouts of fatigue that land me asleep on couches at one of my parents' houses.
As always, many thanks for the good thoughts,
jmb
Wednesday, January 14, 2009
Good news!
My doctor didn't mince words this morning, so I won't either:
Dr. P: "This is fabulous."
me: "Is the tumor smaller?"
Dr. P: "By at least 75%. The tumor itself is gone, there's just some abnormal tissue remaining. It looks very, very good."
Did she say "gone"? She did. Gone. After 2 1/2 weeks? Ha!
So, there's still some zapping to do and a spot of the enemy to scare away, but the growth itself has reduced just to the site where it began, and hopefully as I write it continues to be replaced with strong healthy tissue.
I'd gone in this morning to just check in with her--expecting nothing like this totally thrilling progress report. Needless to say, it was more than worth a surprise exam.
We still have a ways to go--this is only week 3 of 6, but I'm feeling pretty great about the results so far, and I know that they exceed my doc team's expectations. It (a) validates my plan to be a curve breaker (b) changes point #3 of the Mantra to "It IS responding to treatment" and (c), reminds me yet again that a great support team and an incredible circle of wagons out there in the world DOES make a difference.
In less exciting news, the chemo and radiation are starting to have some pesky side effects that I won't bother to share, but they're all manageable, especially in light of the fact that this is all doing just what it's supposed to, really well. I can do anything for 6 weeks, if it means that I can spend my springtime in Crow, get back to my normal life and put this episode into history.
Onward!
As always, much love and thanks for the support,
jmmb
Dr. P: "This is fabulous."
me: "Is the tumor smaller?"
Dr. P: "By at least 75%. The tumor itself is gone, there's just some abnormal tissue remaining. It looks very, very good."
Did she say "gone"? She did. Gone. After 2 1/2 weeks? Ha!
So, there's still some zapping to do and a spot of the enemy to scare away, but the growth itself has reduced just to the site where it began, and hopefully as I write it continues to be replaced with strong healthy tissue.
I'd gone in this morning to just check in with her--expecting nothing like this totally thrilling progress report. Needless to say, it was more than worth a surprise exam.
We still have a ways to go--this is only week 3 of 6, but I'm feeling pretty great about the results so far, and I know that they exceed my doc team's expectations. It (a) validates my plan to be a curve breaker (b) changes point #3 of the Mantra to "It IS responding to treatment" and (c), reminds me yet again that a great support team and an incredible circle of wagons out there in the world DOES make a difference.
In less exciting news, the chemo and radiation are starting to have some pesky side effects that I won't bother to share, but they're all manageable, especially in light of the fact that this is all doing just what it's supposed to, really well. I can do anything for 6 weeks, if it means that I can spend my springtime in Crow, get back to my normal life and put this episode into history.
Onward!
As always, much love and thanks for the support,
jmmb
Tuesday, January 6, 2009
Week 2, Day 2
Not too much to report--except that things have settled into a rhythm. Radiation is easy so far--I show up, they aim and fire, and the whole thing takes about 20 minutes. Then it's on to lunch with whomever I've roped into hanging out with me and a walk. I don't have any major side effects from the zap, which is expected. If I do, they'll show up in the following weeks, but my field is relatively small (hurrah) so it shouldn't be too bad. So far, so good.
The chemo juice is a slightly different story. I've got a funky taste in my mouth, am no longer a night person (or a morning person, or sometimes an afternoon person--I'm a nap person) and just generally feel like I have a light case of the flu. We'll see how it compounds over the weeks, but it's definitely manageable with the plethora of drugs they've put at my disposal.
I did my second round of chemo juice this morning--and actually spent the whole time working away at some work projects, which feels great. After a week of treatment, it's clear to me that projects are in order, so I'm doing a little work for my dear Marche, and generally looking for small things to keep me busy. Knitting with an IV has proven to be a challenge, but I'll figure it out.
I also had my first meeting with a wonderful acupuncurist yesterday. There were needles, a space blanket, 2+ hours and a fabulous pep talk from Dr. Lin, who treats only patients who are battling mutant cells. I'm going to see her twice a week, and for the first time got a needle in the TOP of my head. Yow!
Mark's back in Eugene, getting normal life rolling again, but hopefully come Thursday evening he'll be north again for me to bother. My parents are doing an excellent job letting me bother them--more TLC and attention than I deserve. My dad's back from the wedding in NH and is remembering his chauffeur skills from middle school, ferrying me around to appointments and Pho lunch and back. I hope I'm making it a little easier on him this time (we haven't fought about the radio once yet) and am loving having my own personal guide of Forest Park. My mom's stepped in to Mark's role as food-bully and I'm obediently eating breakfast and lots of iron. On a side note, I arrived home yesterday to find an Angry Mob play set in my mailbox, which I highly recommend for anyone who's got a vendetta. Give me a few months and I'll lend them out.
Right this minute, I'm listening to my dad play his new koa guitar after having taken a good long nap, and thinking about some dinner. Onward.
As always, thanks for the blog posts (eye of the tiger! ninja kitties! roar!) and good thoughts,
Love & Happy New Year,
JMB
The chemo juice is a slightly different story. I've got a funky taste in my mouth, am no longer a night person (or a morning person, or sometimes an afternoon person--I'm a nap person) and just generally feel like I have a light case of the flu. We'll see how it compounds over the weeks, but it's definitely manageable with the plethora of drugs they've put at my disposal.
I did my second round of chemo juice this morning--and actually spent the whole time working away at some work projects, which feels great. After a week of treatment, it's clear to me that projects are in order, so I'm doing a little work for my dear Marche, and generally looking for small things to keep me busy. Knitting with an IV has proven to be a challenge, but I'll figure it out.
I also had my first meeting with a wonderful acupuncurist yesterday. There were needles, a space blanket, 2+ hours and a fabulous pep talk from Dr. Lin, who treats only patients who are battling mutant cells. I'm going to see her twice a week, and for the first time got a needle in the TOP of my head. Yow!
Mark's back in Eugene, getting normal life rolling again, but hopefully come Thursday evening he'll be north again for me to bother. My parents are doing an excellent job letting me bother them--more TLC and attention than I deserve. My dad's back from the wedding in NH and is remembering his chauffeur skills from middle school, ferrying me around to appointments and Pho lunch and back. I hope I'm making it a little easier on him this time (we haven't fought about the radio once yet) and am loving having my own personal guide of Forest Park. My mom's stepped in to Mark's role as food-bully and I'm obediently eating breakfast and lots of iron. On a side note, I arrived home yesterday to find an Angry Mob play set in my mailbox, which I highly recommend for anyone who's got a vendetta. Give me a few months and I'll lend them out.
Right this minute, I'm listening to my dad play his new koa guitar after having taken a good long nap, and thinking about some dinner. Onward.
As always, thanks for the blog posts (eye of the tiger! ninja kitties! roar!) and good thoughts,
Love & Happy New Year,
JMB
Week 2, Day 2
Not too much to report--except that things have settled into a rhythm. Radiation is easy so far--I show up, they aim and fire, and the whole thing takes about 20 minutes. Then it's on to lunch with whomever I've roped into hanging out with me and a walk. I don't have any major side effects from the zap, which is expected. If I do, they'll show up in the following weeks, but my field is relatively small (hurrah) so it shouldn't be too bad. So far, so good.
The chemo juice is a slightly different story. I've got a funky taste in my mouth, am no longer a night person (or a morning person, or sometimes an afternoon person--I'm a nap person) and just generally feel like I have a light case of the flu. We'll see how it compounds over the weeks, but it's definitely manageable with the plethora of drugs they've put at my disposal.
I did my second round of chemo juice this morning--and actually spent the whole time working away at some work projects, which feels great. After a week of treatment, it's clear to me that projects are in order, so I'm doing a little work for my dear Marche, and generally looking for small things to keep me busy. Knitting with an IV has proven to be a challenge, but I'll figure it out.
I also had my first meeting with a wonderful acupuncurist yesterday. There were needles, a space blanket, 2+ hours and a fabulous pep talk from Dr. Lin, who treats only patients who are battling mutant cells. I'm going to see her twice a week, and for the first time got a needle in the TOP of my head. Yow!
Mark's back in Eugene, getting normal life rolling again, but hopefully come Thursday evening he'll be north again for me to bother. My parents are doing an excellent job letting me bother them--more TLC and attention than I deserve. My dad's back from the wedding in NH and is remembering his chauffeur skills from middle school, ferrying me around to appointments and Pho lunch and back. I hope I'm making it a little easier on him this time (we haven't fought about the radio once yet) and am loving having my own personal guide of Forest Park. My mom's stepped in to Mark's role as food-bully and I'm obediently eating breakfast and lots of iron. On a side note, I arrived home yesterday to find an Angry Mob play set in my mailbox, which I highly recommend for anyone who's got a vendetta. Give me a few months and I'll lend them out.
Right this minute, I'm listening to my dad play his new koa guitar after having taken a good long nap, and thinking about some dinner. Onward.
As always, thanks for the blog posts (eye of the tiger! ninja kitties! roar!) and good thoughts,
Love & Happy New Year,
JMB
The chemo juice is a slightly different story. I've got a funky taste in my mouth, am no longer a night person (or a morning person, or sometimes an afternoon person--I'm a nap person) and just generally feel like I have a light case of the flu. We'll see how it compounds over the weeks, but it's definitely manageable with the plethora of drugs they've put at my disposal.
I did my second round of chemo juice this morning--and actually spent the whole time working away at some work projects, which feels great. After a week of treatment, it's clear to me that projects are in order, so I'm doing a little work for my dear Marche, and generally looking for small things to keep me busy. Knitting with an IV has proven to be a challenge, but I'll figure it out.
I also had my first meeting with a wonderful acupuncurist yesterday. There were needles, a space blanket, 2+ hours and a fabulous pep talk from Dr. Lin, who treats only patients who are battling mutant cells. I'm going to see her twice a week, and for the first time got a needle in the TOP of my head. Yow!
Mark's back in Eugene, getting normal life rolling again, but hopefully come Thursday evening he'll be north again for me to bother. My parents are doing an excellent job letting me bother them--more TLC and attention than I deserve. My dad's back from the wedding in NH and is remembering his chauffeur skills from middle school, ferrying me around to appointments and Pho lunch and back. I hope I'm making it a little easier on him this time (we haven't fought about the radio once yet) and am loving having my own personal guide of Forest Park. My mom's stepped in to Mark's role as food-bully and I'm obediently eating breakfast and lots of iron. On a side note, I arrived home yesterday to find an Angry Mob play set in my mailbox, which I highly recommend for anyone who's got a vendetta. Give me a few months and I'll lend them out.
Right this minute, I'm listening to my dad play his new koa guitar after having taken a good long nap, and thinking about some dinner. Onward.
As always, thanks for the blog posts (eye of the tiger! ninja kitties! roar!) and good thoughts,
Love & Happy New Year,
JMB
Monday, December 29, 2008
Drip, drip
Today's the day--and as I type, (awkwardly, due to the IV in my left wrist) the bad-cell-fighting drugs are coursing through my system.
We're sitting in the chemo clinic at OHSU, which is a remarkably nice place. I have a recliner, a view south of the construction on the waterfront, and glimpses of the Willamette River, which is muddy now that the ridiculous snow has melted. It's a classic winter day here, where the sun breaks through and gives us rainbows and mist, then the dark clouds roll back in, open up and pour rain. Mark & I are into our third hour of chemo--one hour of hydration saline, another hour of the real juice, and another hour of saline--and it's sort of reminding me of being on a plane. I've been reading and doing crossword puzzles, Mark taps away at his computer and patiently manages my attempts to get his attention. Every once in a while, someone will bring us something to drink--but no peanuts, so Mark's gone downstairs to the cafe to get some real snacks.
One major difference from air travel is that here, you get free massages. A fabulous volunteer massage therapist named Mary stopped by a while ago and gave me a fabulous foot massage, and didn't even make any cracks about my gnarled old feet & sparkly green toenails. I'm waiting for the mud pack facial next, but I don't think my dreams will be fulfilled on that one.
Anyway, all this rhapsodizing is simply to say that we've gotten treatment started. I was zapped with radiation this morning, with Aretha Franklin singing along and a sort of random picture of Sponge Bob taped to the ceiling. I'll be getting low-dose chemo once a week for six weeks, and a daily zap (weekdays only, please) during that same time. Strange to say, but I'm looking forward to it. Action!
Hope that everyone has a happy new year--raise a glass to good health & making the most of every minute.
love,
MacBlaines
We're sitting in the chemo clinic at OHSU, which is a remarkably nice place. I have a recliner, a view south of the construction on the waterfront, and glimpses of the Willamette River, which is muddy now that the ridiculous snow has melted. It's a classic winter day here, where the sun breaks through and gives us rainbows and mist, then the dark clouds roll back in, open up and pour rain. Mark & I are into our third hour of chemo--one hour of hydration saline, another hour of the real juice, and another hour of saline--and it's sort of reminding me of being on a plane. I've been reading and doing crossword puzzles, Mark taps away at his computer and patiently manages my attempts to get his attention. Every once in a while, someone will bring us something to drink--but no peanuts, so Mark's gone downstairs to the cafe to get some real snacks.
One major difference from air travel is that here, you get free massages. A fabulous volunteer massage therapist named Mary stopped by a while ago and gave me a fabulous foot massage, and didn't even make any cracks about my gnarled old feet & sparkly green toenails. I'm waiting for the mud pack facial next, but I don't think my dreams will be fulfilled on that one.
Anyway, all this rhapsodizing is simply to say that we've gotten treatment started. I was zapped with radiation this morning, with Aretha Franklin singing along and a sort of random picture of Sponge Bob taped to the ceiling. I'll be getting low-dose chemo once a week for six weeks, and a daily zap (weekdays only, please) during that same time. Strange to say, but I'm looking forward to it. Action!
Hope that everyone has a happy new year--raise a glass to good health & making the most of every minute.
love,
MacBlaines
Tuesday, December 23, 2008
Hell on Wheels
Forgive our slowness to post--Houston was hell on wheels. From the (first) snowstorm in Portland to an epic, longer-than-planned time at MDACC, a hotel full of state champ football players (this is texas, remember) celebrating until the wee hours, another snowstorm in Portland and Mad Max-esque scenes in two airports, it was too much to report. Needless to say, when we fell into a warm Portland bed of our own at 4am on Monday morning, we were happy to be home.
But, all of our waiting and feeling trapped was supplanted today, when our Texas doc called with the great news that the lymph nodes they took out were free of microscopic bad guys. We're surer than ever that we know what we're looking at, and feeling so grateful that the study gave us the rare opportunity to look so closely. My dad has compared this experience to feeling like a little frog deep in a well, looking up at the light. Today, the light is brighter and closer than ever.
We're in Oregon, covered with snow and ready to start the smackdown. Monday's the day.
Speaking of which, some of you will be glad to know that I finally have a tattoo. 3, in fact. Don't get your hopes up, they're pinpoint-sized dots on each hip and one in the middle, but I'm no longer a factory model. Apparently, when you have radiation, they like to have a consistent target. Mark tells me that if you look at them under a microscope they're each some version of a screaming eagle, flaming skull, hissing rattlesnake sort of thing, but I'm choosing to believe that each one is just a teeny, tiny little ninja.
All of this has obviously turned my life upside down, and I know I only post when I'm feeling strong and clear-headed. I suppose it goes without saying that there are moments of fear and frustration, but I can't say it enough: hearing from all the amazing people from so many corners of my life makes all the difference. There are ever-more moments of laughter and strength, thanks to your support.
So much love and Merry Christmas/Whatever You Celebrate,
jmb
But, all of our waiting and feeling trapped was supplanted today, when our Texas doc called with the great news that the lymph nodes they took out were free of microscopic bad guys. We're surer than ever that we know what we're looking at, and feeling so grateful that the study gave us the rare opportunity to look so closely. My dad has compared this experience to feeling like a little frog deep in a well, looking up at the light. Today, the light is brighter and closer than ever.
We're in Oregon, covered with snow and ready to start the smackdown. Monday's the day.
Speaking of which, some of you will be glad to know that I finally have a tattoo. 3, in fact. Don't get your hopes up, they're pinpoint-sized dots on each hip and one in the middle, but I'm no longer a factory model. Apparently, when you have radiation, they like to have a consistent target. Mark tells me that if you look at them under a microscope they're each some version of a screaming eagle, flaming skull, hissing rattlesnake sort of thing, but I'm choosing to believe that each one is just a teeny, tiny little ninja.
All of this has obviously turned my life upside down, and I know I only post when I'm feeling strong and clear-headed. I suppose it goes without saying that there are moments of fear and frustration, but I can't say it enough: hearing from all the amazing people from so many corners of my life makes all the difference. There are ever-more moments of laughter and strength, thanks to your support.
So much love and Merry Christmas/Whatever You Celebrate,
jmb
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