I'm sitting in my office waiting for my husband to pick me up from work. Had I known I was going to finish as early as I did, I probably would have found some money for the bus and gone home that way. It's been two hours now, waiting.
Out of nowhere, a scent wafted through my office that smelled like an operating room. It lingered for a few minutes. I was not a fan. Ouchy memories.
I'm pretty anxious about chemo this time. I put it off for a few days because of the schedule at work this week, so I'm not doing it until next Tuesday. I also haven't heard about the PET scan I had this past Monday, so I guess I'm anxious about that too. My assumption is that if anything had been terribly wrong or there was significant (negative) change I'd have gotten a phone call. Who knows?
I don't think I posted this in my blog, but it's been all over Facebook and Twitter - I had an MRI (brain) a couple of weeks back and was told that the largest tumor, the one that is on my brain stem - is totally gone. It was actually a little surreal how the Radiation Oncologist told me, he said it in passing as if it was nothing. It's not nothing... This is a HUGE deal! Oh well.
I got Marinol for nausea and appetite, I chose it over Emend (which was 60 dollars for three pills, Marinol was 15 dollars for 30 pills). It actually worked really well the first few times I took it - I managed to eat an entire plate of food which was not a common occurrence the previous week or two. I took it over the weekend when I was on the way to dinner with family (so I would want to eat) and again the following morning. Dosage says to take it every six hours, but after an hour or two on Sunday I was sitting in the car (not driving, before you ask) and suddenly...
I was actually high/stoned. It was not happy or pleasant, and I slept most of the two hour drive home because I could not deal with how weird I felt. My only theory is that it had been about 12 hours since my previous dose and it hadn't fully metabolized in my system. Needless to say, I'm actually afraid to take it again because the experience was so unpleasant. I'm refilling my Zofran tonight, so that's good.
There isn't much else going on. I'm sleeping well, I'm pretty happy... The pain in my left leg has diminished immensely and I'm actually walking normally most of the time (unless I've been sitting for a long time). I bought some new shoes which are also amazing... And I also think that helps my feet/walking. I'm anxious to feel even better so I can start walking around the neighborhood.
That's all, for now. I went to Amish country but I'll talk about that another time.
Showing posts with label CyberKnife. Show all posts
Showing posts with label CyberKnife. Show all posts
Thursday, October 23, 2014
High There
Labels:
appetite,
brain mets,
brain stem tumor,
chemo,
CyberKnife,
good news,
Marinol,
nausea,
progress,
stoned,
THC
Wednesday, July 9, 2014
Seis Cuchillos de Cyber
Fun fact: 6 is the smallest positive integer which is neither a square number nor a prime number.
6 is also the number of CyberKnife treatment sessions I have completed. To review, the first session was to target all small tumors except the one in the mid-brain. The following 5 treatments were for the mid-brain tumor, which required lower doses of radiation.
Today, I am more tired than I can recall being in quite some time. I was told there'd be some blood drawn (I had a voice mail from my oncologist's nurse) but when I walked all the way to the place where they do draws for port people... Nothing. No orders on file. So, I head toward work. I work very close to where I have treatments (this is actually a wonderful thing) but the walk might as well have been ten miles today.
We're going out to celebrate tonight, barring any serious energy meltdown - we found a barbecue place outside of town and for some reason that just sounds really good to me. The 30+ minute drive to get there? Eh. I'll have to think about it.
The Radiation Oncologist said that the effects of the radiation are cumulative, and that includes side effects. So, the fatigue and any other fun stuff that might come along because of radiation should be in full force, and I believe it! I got the good news that I will be able to start scaling back the dosage on the steroid starting on Monday. I'll reduce the dose by half for a week, reduce it by a half again, and again... Until I'm taking 2mg every other day (I think).
I cannot believe I chose to work today. Had I known that the last session would make me so tired, I would have asked for the day off and I would have chosen to do absolutely NOTHING except lay around in the one room in our apartment that is air-conditioned. I feel very grateful however, that I have been well enough to work my shifts without problems.
Three cheers for being done with CyberKnife treatments!! (and, I got to keep my mask!!)
![]() |
NOT CyberKnife. |
6 is also the number of CyberKnife treatment sessions I have completed. To review, the first session was to target all small tumors except the one in the mid-brain. The following 5 treatments were for the mid-brain tumor, which required lower doses of radiation.
Today, I am more tired than I can recall being in quite some time. I was told there'd be some blood drawn (I had a voice mail from my oncologist's nurse) but when I walked all the way to the place where they do draws for port people... Nothing. No orders on file. So, I head toward work. I work very close to where I have treatments (this is actually a wonderful thing) but the walk might as well have been ten miles today.
We're going out to celebrate tonight, barring any serious energy meltdown - we found a barbecue place outside of town and for some reason that just sounds really good to me. The 30+ minute drive to get there? Eh. I'll have to think about it.
The Radiation Oncologist said that the effects of the radiation are cumulative, and that includes side effects. So, the fatigue and any other fun stuff that might come along because of radiation should be in full force, and I believe it! I got the good news that I will be able to start scaling back the dosage on the steroid starting on Monday. I'll reduce the dose by half for a week, reduce it by a half again, and again... Until I'm taking 2mg every other day (I think).
I cannot believe I chose to work today. Had I known that the last session would make me so tired, I would have asked for the day off and I would have chosen to do absolutely NOTHING except lay around in the one room in our apartment that is air-conditioned. I feel very grateful however, that I have been well enough to work my shifts without problems.
Three cheers for being done with CyberKnife treatments!! (and, I got to keep my mask!!)
Labels:
completing treatment,
CyberKnife,
exhausted,
fatigue,
radiation mask,
radiation therapy,
side effects,
steroids
Monday, July 7, 2014
Insane in the Mid-Brain
It actually turns out that I have a total of six (6) CyberKnife sessions, and that today was NOT my last (as I'd thought). The first session targeted all areas of the brain affected by tumors except the mid-brain (10 tumors in all, including little "seeds".). The subsequent 5 are all to target the mid-brain tumor with lower doses of radiation. My medical staff felt that a single, heavy dose of radiation to the mid-brain would actually put me at a higher risk for permanent cognitive damage, so that's why it's spread out.
This is part of a back-lit mural on the ceiling above where I am when I'm receiving treatment. In reality there is a third panel to the right of the two you see. It's a lovely little panorama that reminds me of the canals of Tortuguero, Costa Rica. When I started treatments, I would count the parrots, and then the white birds, and then the (howler?) monkeys in the trees. It gets a little difficult to count them, because you can't move your head. During last week's second session, I noticed something.
He's had an accident! That poor bird has collided with the metal strip piecing the mural together and he's presently in a world of hurt. Seriously, does it not look like he's just faceplanted? Now, before the treatments start I always look for "Faceplant Bird" and I have a muffled little chuckle (because of the mask, you see).
I've been sleeping a lot - taking naps during the day and falling asleep early and for longer periods of time. I have not had to rely on sleeping pills, but I did start taking Melatonin. I've also taken Flexeril (a prescription muscle relaxer) before bed for two days in a row now - the first night I slept continuously with zero leg cramps... Last night/this morning I woke up with leg cramps, so the actual correlation between Flexeril and no leg cramps is inconclusive at best (for now).
Real talk now?
I miss taking chemotherapy. My breathing has not been... As fantastic lately. They do monitor my O2 saturation while I'm having radiation and there's been no cause for alarm, it's in normal parameters for a healthy person - but I notice that it's harder to breathe after going up stairs now. It's a little harder to breathe at the end of a bike ride. It really could be due to humidity (I do notice it more when it's hot out, or muggy feeling) or the fact that I'm just stressed out about it. It could be allergies - but I've been off the chemotherapy drug for a couple of weeks now and I really wish I was back on it. They want to assess me in a week or so (with an MRI and CT) to see what, if anything the radiation has done to my head. At that point, they'll likely decide whether I should remain on the trial or continue on to traditional IV chemotherapy. They could also be hoping for results from the liver biopsy - maybe Foundation Medical was able to use a sample and they'll have something to say. All I can say is, hooray for anti-anxiety medicine.
See you Wednesday, Faceplant-Bird - I'm going to celebrate when my last appointment is done.
![]() |
Count the birdies! |
![]() |
What is going on with THAT bird? |
I've been sleeping a lot - taking naps during the day and falling asleep early and for longer periods of time. I have not had to rely on sleeping pills, but I did start taking Melatonin. I've also taken Flexeril (a prescription muscle relaxer) before bed for two days in a row now - the first night I slept continuously with zero leg cramps... Last night/this morning I woke up with leg cramps, so the actual correlation between Flexeril and no leg cramps is inconclusive at best (for now).
Real talk now?
I miss taking chemotherapy. My breathing has not been... As fantastic lately. They do monitor my O2 saturation while I'm having radiation and there's been no cause for alarm, it's in normal parameters for a healthy person - but I notice that it's harder to breathe after going up stairs now. It's a little harder to breathe at the end of a bike ride. It really could be due to humidity (I do notice it more when it's hot out, or muggy feeling) or the fact that I'm just stressed out about it. It could be allergies - but I've been off the chemotherapy drug for a couple of weeks now and I really wish I was back on it. They want to assess me in a week or so (with an MRI and CT) to see what, if anything the radiation has done to my head. At that point, they'll likely decide whether I should remain on the trial or continue on to traditional IV chemotherapy. They could also be hoping for results from the liver biopsy - maybe Foundation Medical was able to use a sample and they'll have something to say. All I can say is, hooray for anti-anxiety medicine.
See you Wednesday, Faceplant-Bird - I'm going to celebrate when my last appointment is done.
Labels:
brain tumors,
breathing,
chemotherapy,
CyberKnife,
distractions,
flexeril,
humor,
melatonin,
mid-brain tumor,
radiation therapy,
xanax
Thursday, July 3, 2014
CyberKnife Episode IV - A New Zap
Today's music will be brought to me by Star Wars. We're even going to put the 20th Century Fox intro on the first track, I think it would be amusing if it played as the heavy lead door to the room was closing slowly - but that will probably not happen.
We looked at some apartments yesterday and I feel that we're very close to finding something GREAT! I do not want to reveal too much because I'm mildly superstitious about it, but I've got my fingers crossed. As of now, it's all I can think about.
I e-mailed my nurse about the leg cramps I've been having - I know I've spoken about them before but they're increasing in frequency and pain level, and they mostly happen at night. Sleeping has been a little better, I'm crediting melatonin and the fact that I took the steroid MUCH earlier in the day yesterday. I've also been trying to nap/sleep more, and that's been beneficial.
I have to remember to do things for myself, to be good to myself. To not be a hero (two nurses have told me that).
Sometimes, I actually do forget that I'm battling a serious illness. It's hard to explain - because I'm reminded somehow every day that I have cancer. Maybe I'm used to cancer? That's weird, isn't it? The only thing that reminds me from time to time that I'm actually not well is when fatigue hits me, or I see/feel one of my scars (my port, for one). I guess in a way, it helps me to remain positive. I'm not in denial - in fact I do a lot to make sure that others know about cancer. I want people to know what my experiences are like, even if they're not pleasant.
I typed most of this before I actually had radiation. Today was a quick appointment, they seem to get faster once they're able to pinpoint the places they need to go. From setup to completion, it generally takes about 30-40 minutes now. Fatigue has hit me, now. My husband brought me a healthy wrap (pita with cabbage and other veggies and chicken) and a yummy mango lemonade after treatment. It was good to have something delicious.
Now, I'm very tired. I've been biking to and from work on most days, but generally find that it's difficult to ride after radiation treatment, so I don't. One more appointment to go!
We looked at some apartments yesterday and I feel that we're very close to finding something GREAT! I do not want to reveal too much because I'm mildly superstitious about it, but I've got my fingers crossed. As of now, it's all I can think about.
I e-mailed my nurse about the leg cramps I've been having - I know I've spoken about them before but they're increasing in frequency and pain level, and they mostly happen at night. Sleeping has been a little better, I'm crediting melatonin and the fact that I took the steroid MUCH earlier in the day yesterday. I've also been trying to nap/sleep more, and that's been beneficial.
I have to remember to do things for myself, to be good to myself. To not be a hero (two nurses have told me that).
Sometimes, I actually do forget that I'm battling a serious illness. It's hard to explain - because I'm reminded somehow every day that I have cancer. Maybe I'm used to cancer? That's weird, isn't it? The only thing that reminds me from time to time that I'm actually not well is when fatigue hits me, or I see/feel one of my scars (my port, for one). I guess in a way, it helps me to remain positive. I'm not in denial - in fact I do a lot to make sure that others know about cancer. I want people to know what my experiences are like, even if they're not pleasant.
I typed most of this before I actually had radiation. Today was a quick appointment, they seem to get faster once they're able to pinpoint the places they need to go. From setup to completion, it generally takes about 30-40 minutes now. Fatigue has hit me, now. My husband brought me a healthy wrap (pita with cabbage and other veggies and chicken) and a yummy mango lemonade after treatment. It was good to have something delicious.
Now, I'm very tired. I've been biking to and from work on most days, but generally find that it's difficult to ride after radiation treatment, so I don't. One more appointment to go!
Labels:
cancer,
CyberKnife,
fatigue,
illness,
leg cramps,
radiation therapy,
talking about cancer
Tuesday, July 1, 2014
CyberKnife #3
Yeah, yeah. CyberKnife.
What's more important is... I had a NAP!!
I got to my appointment today at 11 and was told that there'd be a little bit of a delay, which was fine. I was falling asleep in the waiting room so my nurse actually asked me if I wanted to go lay down in a quiet area in a recliner - and that sounded so good! I didn't think I'd sleep at first, but they came back to get me at NOON and my nurse said I'd actually fallen asleep for a while.
I wrote the first part of this entry earlier in the afternoon. When I got home from work, I fell asleep again - and again after dinner for several hours! My only concern now is that it's a little past 1:00 in the morning and I'm due to be up in 4 hours for work. Strangely enough I'm starting to come to peace with my completely screwed up sleeping schedule. There have only been a couple of days where I've felt totally wiped out and thankfully, those have been on weekends. I woke up at 3:00 yesterday and managed to fall asleep for one hour on the couch before really waking up for work around 6.
I didn't have my own CD of music for CyberKnife again today. I'm not truthfully that upset by it, but listening to the music that other people have left behind from their treatments is a little weird in my mind. Lots of crooner music today, some of it kind of depressing. I sort of wondered why the person who left the CD chose the songs they did - if they put them in a melancholy or reflective state of mind... Or if it's just nostalgic music to them.
I still want to make a CD with science fiction music (I have already made a playlist on Spotify) and I'd love to leave it for someone else. I wonder what they'd think as they lay on the table, listening to the clicks and drone of the machine - all the while with the Star Trek: The Next Generation theme song in the background. Would they laugh (muffled of course, you can't even talk in that mask) or think it was completely weird that someone chose to have their treatment to that song? What if I followed it up with the Superman theme? I also considered having the theme from Rocky Horror Picture Show - not sure why except I do actually like that soundtrack.
The side effects are the same today, I'm tired (obviously!) and I have a little headache. I had a discussion with the nurse about the side effects from the steroids (skin issues and a little edema are the latest, but sleeplessness is a big one still) and she suggested that I take the second dose earlier in the day (2:00-ish instead of 5). I didn't have the pill bottle with me at work so I didn't get to try this today, but I will tomorrow.
One thing that's been happening the past day or so are TERRIBLE leg/feet cramps that aren't even in my calves. The top tendon of my feet and my ankles tense up so badly that my feet and toes curl upward and the pain is excruciating. It took several minutes of pained contortion/massaging of my feet (I tried standing up and placing my feet flat - OW) to get it to stop. It happened in the middle of the night last night and again this afternoon. I have been drinking Gatorade and water but know that I could always drink more. It's a horrible excuse, but water is so boring to me. I've been taking potassium, too. I brought it up to the nurse and we agreed again, that the dreaded Dexamethasone is likely to blame. It seems like such an innocuous drug to me, but I guess I'm wrong - it has wreaked more havoc on me than anything I've ever had to take before - and that includes chemotherapy (so far - keep in mind no IV yet and I know that's a whole new ballgame).
I suppose it's time to try and sleep again, I'm not sure how it will go. I had to take another Pepcid - I took one earlier but started to feel not so good again. There's a farmer's market happening Thursday on the campus of the hospital. I want to try and get there before or after treatment to see if they have strawberries. I know the season may be dwindling but I seriously want and need more! Yummy!
What's more important is... I had a NAP!!
I got to my appointment today at 11 and was told that there'd be a little bit of a delay, which was fine. I was falling asleep in the waiting room so my nurse actually asked me if I wanted to go lay down in a quiet area in a recliner - and that sounded so good! I didn't think I'd sleep at first, but they came back to get me at NOON and my nurse said I'd actually fallen asleep for a while.
I wrote the first part of this entry earlier in the afternoon. When I got home from work, I fell asleep again - and again after dinner for several hours! My only concern now is that it's a little past 1:00 in the morning and I'm due to be up in 4 hours for work. Strangely enough I'm starting to come to peace with my completely screwed up sleeping schedule. There have only been a couple of days where I've felt totally wiped out and thankfully, those have been on weekends. I woke up at 3:00 yesterday and managed to fall asleep for one hour on the couch before really waking up for work around 6.
I didn't have my own CD of music for CyberKnife again today. I'm not truthfully that upset by it, but listening to the music that other people have left behind from their treatments is a little weird in my mind. Lots of crooner music today, some of it kind of depressing. I sort of wondered why the person who left the CD chose the songs they did - if they put them in a melancholy or reflective state of mind... Or if it's just nostalgic music to them.
I still want to make a CD with science fiction music (I have already made a playlist on Spotify) and I'd love to leave it for someone else. I wonder what they'd think as they lay on the table, listening to the clicks and drone of the machine - all the while with the Star Trek: The Next Generation theme song in the background. Would they laugh (muffled of course, you can't even talk in that mask) or think it was completely weird that someone chose to have their treatment to that song? What if I followed it up with the Superman theme? I also considered having the theme from Rocky Horror Picture Show - not sure why except I do actually like that soundtrack.
The side effects are the same today, I'm tired (obviously!) and I have a little headache. I had a discussion with the nurse about the side effects from the steroids (skin issues and a little edema are the latest, but sleeplessness is a big one still) and she suggested that I take the second dose earlier in the day (2:00-ish instead of 5). I didn't have the pill bottle with me at work so I didn't get to try this today, but I will tomorrow.
One thing that's been happening the past day or so are TERRIBLE leg/feet cramps that aren't even in my calves. The top tendon of my feet and my ankles tense up so badly that my feet and toes curl upward and the pain is excruciating. It took several minutes of pained contortion/massaging of my feet (I tried standing up and placing my feet flat - OW) to get it to stop. It happened in the middle of the night last night and again this afternoon. I have been drinking Gatorade and water but know that I could always drink more. It's a horrible excuse, but water is so boring to me. I've been taking potassium, too. I brought it up to the nurse and we agreed again, that the dreaded Dexamethasone is likely to blame. It seems like such an innocuous drug to me, but I guess I'm wrong - it has wreaked more havoc on me than anything I've ever had to take before - and that includes chemotherapy (so far - keep in mind no IV yet and I know that's a whole new ballgame).
I suppose it's time to try and sleep again, I'm not sure how it will go. I had to take another Pepcid - I took one earlier but started to feel not so good again. There's a farmer's market happening Thursday on the campus of the hospital. I want to try and get there before or after treatment to see if they have strawberries. I know the season may be dwindling but I seriously want and need more! Yummy!
Labels:
brain radiation,
CyberKnife,
dexamethasone,
insomnia,
leg cramps,
music,
side effects,
sleep,
steroids
Friday, June 27, 2014
Limited Edition
Undergoing treatment comes with limitations.
There's a monthly (bike) ride happening tonight that I desperately want to participate in. I had CyberKnife yesterday, so I was curious about going on a bike ride tonight. I finally got a hold of my nurse in Radiation Oncology who feels it's probably not a good idea to go on longer rides right now. She asked if I was having any headache and I said yes (which is common, evidently). She didn't think being out in the sun was a good idea right now. The doctor feels it's a good idea to keep rides at a "leisurely pace" and under 10 miles round trip until radiation is complete and I can be evaluated (MRI and CT).
Unfortunately, the total distance for my ride tonight would be at a minimum 16, but likely around 20-22. It really bothers me to not be able to ride longer distances right now. I know I couldn't do a hammer ride or anything - but I feel like if I could go slow enough (10-12 MPH) I could easily bang out 20+ miles...
Bleh.
I'm going to buy some panniers for my hybrid bicycle and start exclusively biking to the store (weather permitting) so that I have that excuse to hop on my bike. I only live a mile away from my office, but the short ride to work in the morning has been liberating. I'm slightly afraid of riding up the hill, because the last time I did that was when I started having headaches - then they found the tumors in my brain.
I understand the reason for limitations, but in a way they make me feel like slightly less of a person sometimes.
There's a monthly (bike) ride happening tonight that I desperately want to participate in. I had CyberKnife yesterday, so I was curious about going on a bike ride tonight. I finally got a hold of my nurse in Radiation Oncology who feels it's probably not a good idea to go on longer rides right now. She asked if I was having any headache and I said yes (which is common, evidently). She didn't think being out in the sun was a good idea right now. The doctor feels it's a good idea to keep rides at a "leisurely pace" and under 10 miles round trip until radiation is complete and I can be evaluated (MRI and CT).
Unfortunately, the total distance for my ride tonight would be at a minimum 16, but likely around 20-22. It really bothers me to not be able to ride longer distances right now. I know I couldn't do a hammer ride or anything - but I feel like if I could go slow enough (10-12 MPH) I could easily bang out 20+ miles...
Bleh.
I'm going to buy some panniers for my hybrid bicycle and start exclusively biking to the store (weather permitting) so that I have that excuse to hop on my bike. I only live a mile away from my office, but the short ride to work in the morning has been liberating. I'm slightly afraid of riding up the hill, because the last time I did that was when I started having headaches - then they found the tumors in my brain.
I understand the reason for limitations, but in a way they make me feel like slightly less of a person sometimes.
Labels:
anxiety,
brain radiation,
CyberKnife,
exercise,
frustration,
headaches,
limitations,
radiation,
side effects
Thursday, June 26, 2014
CyberKnife 2 : Radiation Boogaloo
Today's CyberKnife music was brought to me by the Mamas and the Papas, for the most part. I have the choice to bring in CDs if I want to, but we've had some mishaps with burning music so I've relied on what they have. Hopefully I will have my own sweet jams for session three.
Initially the treatment seemed to take more out of me. I felt dizzy and a little disoriented - more than before... But maybe my head was just squished a little too much in the mask. I felt and still feel a little more lethargic today. I ate lunch when I got back to work and feel a little better.
I'll be happy when I can lay down and rest, to be honest.
The session didn't last as long, but I was still there receiving treatment for 30-45 minutes. It's not so bad - again the mask is a little surreal and it wasn't on tightly enough at first so when they were setting me up, they had to come in the room and re-adjust me so I was nice and immobile.
There's an oncology social worker that visits me from time to time, and she stopped the room where I was waiting and brought me a card/brochure for art therapy - I can decorate my radiation mask when I'm done.
Art is very important to me, it always has been in a way - I had a job a few years back where I'd bring pens and markers to work to doodle - and eventually my boss took my art supplies from me... That only made me more creative and defiant.
I'm looking to get back into some sort of exercise program. Hopefully I'll be able to lift weights some, but I think I'll be doing it at a significantly lower intensity than before. I'm thinking more about trying yoga, and seeing if I can find water aerobics in my area (the class in the winter was unreliable due to weather and other issues, I'm guessing). I don't feel as fast or as strong right now, but I've got to keep moving.
We did find strawberries yesterday. They're delicious - I had some with breakfast and lunch!!
Initially the treatment seemed to take more out of me. I felt dizzy and a little disoriented - more than before... But maybe my head was just squished a little too much in the mask. I felt and still feel a little more lethargic today. I ate lunch when I got back to work and feel a little better.
I'll be happy when I can lay down and rest, to be honest.
The session didn't last as long, but I was still there receiving treatment for 30-45 minutes. It's not so bad - again the mask is a little surreal and it wasn't on tightly enough at first so when they were setting me up, they had to come in the room and re-adjust me so I was nice and immobile.
There's an oncology social worker that visits me from time to time, and she stopped the room where I was waiting and brought me a card/brochure for art therapy - I can decorate my radiation mask when I'm done.
Art is very important to me, it always has been in a way - I had a job a few years back where I'd bring pens and markers to work to doodle - and eventually my boss took my art supplies from me... That only made me more creative and defiant.
I'm looking to get back into some sort of exercise program. Hopefully I'll be able to lift weights some, but I think I'll be doing it at a significantly lower intensity than before. I'm thinking more about trying yoga, and seeing if I can find water aerobics in my area (the class in the winter was unreliable due to weather and other issues, I'm guessing). I don't feel as fast or as strong right now, but I've got to keep moving.
We did find strawberries yesterday. They're delicious - I had some with breakfast and lunch!!
Labels:
art,
art therapy,
CyberKnife,
exercise,
fatigue,
fitness,
music,
radiation therapy,
side effects,
strawberries
Tuesday, June 24, 2014
CyberKnife #1 - A Trip Report
First CyberKnife appointment... Complete!
Truthfully, it wasn't that bad. The weirdest part is having this on your face:
This mask is tight and I'm not saying "Yo, this mask is TIGHT!" as in that it's cool. No, you will have little "grill marks" across your face for a while after it comes off. After an hour, it's kind of uncomfortable. The mask is screwed to the table, and you cannot move your face or head at all. They also made me a nice little cushion for the back of my head, so that helped.
Truthfully, it wasn't that bad. The weirdest part is having this on your face:
![]() |
Not mine, just an example! |
As of right now (about 1.5 hours post-radiation) I am tired. Walking up the stairs to my office afterwards was kind of tiring. I feel a little spaced out and dizzy if I stand up too much - but pretty much okay.
I think I'll probably sleep well tonight, and not feel like doing a whole lot. I was able to eat when I got back to the office (spoiler alert: avocado was involved) and I'm not really nauseated at this point. I was told side effects can crop up in a day or so, but we'll see.
The mixtape we made to listen to actually didn't work - it stopped playing after the second track... So I had to listen to some horrible opera - which was barely distinguishable over the buzz of the machine anyway. The CyberKnife was a little interesting, the "arm" of the machine moves around as it targets the various tumors.
On that note, the detailed scans that they performed last week did find additional tumors. The initial scans last month found a total of four - one in the mid-brain (brain stem). The MRI/CT that they did last week takes finer slices (1mm, I think?) and they've located a total of 10. The doctor assured this does not mean the cancer has progressed further, but that the detailed scan was needed to make sure they are able to target EVERYTHING. I'm glad they're so thorough.
More happy news, no weight gain from steroids. Avocados are the way and the light. Now though? I'm really jonesin' for strawberries. Who has strawberries? Teleport me some?
That's it for now! Go eat an avocado!
Labels:
avocado,
brain tumors,
cancer,
CyberKnife,
fatigue,
radiation,
radiation mask,
strawberries
Monday, June 23, 2014
Radiation Anticipation
I couldn't sleep last night - I ended up waking up at 3:00 this morning but managed to burrito myself in a blanket until 3:30, at which point I set up camp on our couch with a couple of pillows, a blanket and Netflix. I ended up sleeping until around 6:00, drifting in and out of consciousness between episodes of Futurama. I woke up at 6:00 yesterday despite having taking a sleeping pill (Trazodone) and mini-binged on Say Yes to the Dress.
We had a pretty full weekend - we went to the Farmer's Market on Saturday and picked up a lot of my favorites (Cleveland Kraut, some yummy almond milk from Forty-One that I'm obsessed with, some more strawberries and a quart of blueberries) and a few other things. I made my husband a strawberry pie (as is tradition) for his belated birthday. Later in the evening we spent some time with friends - this was my favorite part of the day, by the way - and headed home late, because I'm a chatty girl.
Sunday was another early start for me (are we shocked now?) so I baked some blueberry muffins and quietly cleaned as my husband slept.
We visited another market in the afternoon on Sunday, and it was a beautiful and sunny afternoon. After the market on Sunday, we came home and I cooked a delicious carnitas dinner! By 8:30 I was exhausted - which might explain why I was wide awake so early today, but it's still probably to do with the steroids.
My participation in the clinical trial (chemotherapy) is on hold as I undergo radiation therapy. Because of this, I'm able to take Pepcid and other antacids that were off limits to me. If I need it, I can also take Zofran now. There are many drugs listed in the protocol for the trial that can cause dangerous arrhythmia, so it was/is important to be aware of those. Thankfully on the time or two I forgot, or didn't know about a particular medication I didn't have any issues, but there was a definite risk.
I'm starting to get a little anxious about the radiation. I guess in a way I'm thinking about how very un-ordinary it is to be doing this, even though a lot of what I do to treat my cancer seems very ordinary to me, anymore. Chemotherapy has been daily for months and months, it's as second nature as a vitamin to me. But yeah, tomorrow - I'll be strapped to a table for two hours in a plastic mesh mask getting beams of highly concentrated radiation shot into various spots in my brain in hopes to kill the tumors inside.
I'm mostly worried about how I'm going to feel afterwards.
I'm still on a never-ending quest for restful sleep. Reflux is getting better at night thanks to being propped up a little and Pepcid - There's minimal pain with the port site now (I lifted a bit too much the other day and it was throbbing for an hour) and it seems to be settling into place. My legs are weak and crampy from the steroids, but Gatorade and potassium tablets are helping that too. Honestly, I just want to sleep. I'll try when I get home this afternoon, but I'm not holding my breath! I have a prescription for Ambien, but I'm afraid I'll wake with that too - and crazy things happen with Ambien when you're half awake... I've experienced it. I say crazy things, at the very least.
We had a pretty full weekend - we went to the Farmer's Market on Saturday and picked up a lot of my favorites (Cleveland Kraut, some yummy almond milk from Forty-One that I'm obsessed with, some more strawberries and a quart of blueberries) and a few other things. I made my husband a strawberry pie (as is tradition) for his belated birthday. Later in the evening we spent some time with friends - this was my favorite part of the day, by the way - and headed home late, because I'm a chatty girl.
Sunday was another early start for me (are we shocked now?) so I baked some blueberry muffins and quietly cleaned as my husband slept.
We visited another market in the afternoon on Sunday, and it was a beautiful and sunny afternoon. After the market on Sunday, we came home and I cooked a delicious carnitas dinner! By 8:30 I was exhausted - which might explain why I was wide awake so early today, but it's still probably to do with the steroids.
My participation in the clinical trial (chemotherapy) is on hold as I undergo radiation therapy. Because of this, I'm able to take Pepcid and other antacids that were off limits to me. If I need it, I can also take Zofran now. There are many drugs listed in the protocol for the trial that can cause dangerous arrhythmia, so it was/is important to be aware of those. Thankfully on the time or two I forgot, or didn't know about a particular medication I didn't have any issues, but there was a definite risk.
I'm starting to get a little anxious about the radiation. I guess in a way I'm thinking about how very un-ordinary it is to be doing this, even though a lot of what I do to treat my cancer seems very ordinary to me, anymore. Chemotherapy has been daily for months and months, it's as second nature as a vitamin to me. But yeah, tomorrow - I'll be strapped to a table for two hours in a plastic mesh mask getting beams of highly concentrated radiation shot into various spots in my brain in hopes to kill the tumors inside.
I'm mostly worried about how I'm going to feel afterwards.
I'm still on a never-ending quest for restful sleep. Reflux is getting better at night thanks to being propped up a little and Pepcid - There's minimal pain with the port site now (I lifted a bit too much the other day and it was throbbing for an hour) and it seems to be settling into place. My legs are weak and crampy from the steroids, but Gatorade and potassium tablets are helping that too. Honestly, I just want to sleep. I'll try when I get home this afternoon, but I'm not holding my breath! I have a prescription for Ambien, but I'm afraid I'll wake with that too - and crazy things happen with Ambien when you're half awake... I've experienced it. I say crazy things, at the very least.
Labels:
ambien,
brain mets,
cancer,
CyberKnife,
insomnia,
lung cancer,
radiation therapy,
sleep,
the mask,
trazodone,
tumors
Tuesday, June 17, 2014
Radioactive
Today was the setup appointment for my CyberKnife sessions. I was told it would be a full day, but ended up leaving the hospital after only 3-4 hours. I met the nurse who I'd usually be dealing with on treatment days (she's wonderful) and we talked about the schedule. Treatment sessions will last about two hours each - there is a stereo in the chamber and I was told I can bring in any CDs I want. Time to make some mixtapes!
I got fitted for my mask, and had a CT scan and MRI. They do these scans at a finer detail to make sure they don't miss any little tumor "seeds" that they can target during sessions. The mask wasn't bad, the MRI was annoying... You do what you have to do. You carry on, or you don't. Those are the options, and I choose to carry on!
It was established that sessions would begin in July - but I've since gotten a phone call and radiation begins next Tuesday. I will likely have two consecutive sessions next week, two more the following week and then a fifth the following week. It's not exactly jam-packed. During radiation therapy, I will not take chemotherapy medication. I will not resume it for three days after radiation ends.
All in all, today wasn't that stressful but I'm still pretty tired. The weather decided to warm up and even our ground floor apartment isn't impervious to 90 degree heat and the humidity. It's gross, I feel slow and exhausted. I'm doing laundry (don't worry, I am not lifting anything heavy) and then plan to take an extremely cold shower.
I'm curious about how radiation will affect me. Most things I read say that side effects with CyberKnife are minimal and don't usually show up for weeks (as the tumors start to dissolve/die) if at all. I'm anxious for business as usual.
I got fitted for my mask, and had a CT scan and MRI. They do these scans at a finer detail to make sure they don't miss any little tumor "seeds" that they can target during sessions. The mask wasn't bad, the MRI was annoying... You do what you have to do. You carry on, or you don't. Those are the options, and I choose to carry on!
It was established that sessions would begin in July - but I've since gotten a phone call and radiation begins next Tuesday. I will likely have two consecutive sessions next week, two more the following week and then a fifth the following week. It's not exactly jam-packed. During radiation therapy, I will not take chemotherapy medication. I will not resume it for three days after radiation ends.
All in all, today wasn't that stressful but I'm still pretty tired. The weather decided to warm up and even our ground floor apartment isn't impervious to 90 degree heat and the humidity. It's gross, I feel slow and exhausted. I'm doing laundry (don't worry, I am not lifting anything heavy) and then plan to take an extremely cold shower.
I'm curious about how radiation will affect me. Most things I read say that side effects with CyberKnife are minimal and don't usually show up for weeks (as the tumors start to dissolve/die) if at all. I'm anxious for business as usual.
Labels:
cancer,
CyberKnife,
lung cancer,
music,
radiation therapy,
treatment,
weather
Sunday, June 15, 2014
If hungry + angry = hangry...
Then does happy + tired = hired? I'm hired.
I feel sort of like this weekend flew by, and I'm not entirely sure I remember all of it!
My in-laws did come to visit yesterday - we went to dinner and then walked around at the beach for a little while. The night ended with liquid nitrogen churned ice cream from Piccadilly in Uptown (mmm, salted caramel!). I worked for a little while this morning and then had brunch with my in-laws and husband earlier today.
I'd felt out of sorts all afternoon after that, though. I ended up waking up VERY early this morning thanks to some horrible reflux (thanks a lot, steroids) and ended up staying up for almost two hours while I tried just about anything (Pepto, milk, ice cream, water...) to stop the acid reflux. 90 minutes later I had to wake up for work. We went to the grocery today and I felt compelled to sit down on the floor, my legs and feet didn't want to propel me forward anymore. Luckily, we made it home.
More about steroids, though - they're funny. I hear horror stories about people eating terrible things and eating a LOT - while I'll admit my appetite has been better than it usually is, I've been craving things like avocado/guacamole and this curry kraut made by a local company. I wonder what they taste like together... Heck, I even ate gorgonzola cheese on a salad yesterday and I liked it.
If I wasn't on this ALK study drug, handling steroid side effects would be MUCH easier. They usually prescribe Pepcid or something like it for the reflux, but I'm not supposed to take those things due to potential cardiac issues with the clinical trial drug. I got desperate tonight though, tired of the burning sore throat from stomach acid - I actually took a Pepcid tonight. I feel okay and don't plan on making a habit of it, but last night was so awful I didn't want a repeat later on tonight.
The surgery site for my port is looking good - it seems to be healing nicely. In a fit of desperation to ride my bike today, I biked the short distance to my office. It's about a mile and is normally no big deal, but when I had to get my upper body into the meager incline leading to the campus quad - I really felt a pretty significant ache in my shoulder where the port is. The pain went away after 5-10 minutes and there was no bleeding... But man, do I miss riding my bike. The legs are willing, but the arms don't want to play along yet. I also still have some pain reaching to the left side with my right arm. So far, this only comes into play when I shower - or if for some reason I'm trying to do it on purpose.
Tuesday is the set-up appointment for CyberKnife surgery. They'll do some scans and give me my plastic mask (I'm really looking forward to that one, yep. Sarcasm, by the way). It'll be a week or so before the real deal, so I get to mentally prepare... Some more. I'm so impatient. I want it now. I'm like Veruca Salt singing about her liver biopsy results, or something.
I want results...
I want Foundation...
Treatment, radiation
An Amish vacation!
GIVE IT TO ME NOW.
I feel sort of like this weekend flew by, and I'm not entirely sure I remember all of it!
My in-laws did come to visit yesterday - we went to dinner and then walked around at the beach for a little while. The night ended with liquid nitrogen churned ice cream from Piccadilly in Uptown (mmm, salted caramel!). I worked for a little while this morning and then had brunch with my in-laws and husband earlier today.
I'd felt out of sorts all afternoon after that, though. I ended up waking up VERY early this morning thanks to some horrible reflux (thanks a lot, steroids) and ended up staying up for almost two hours while I tried just about anything (Pepto, milk, ice cream, water...) to stop the acid reflux. 90 minutes later I had to wake up for work. We went to the grocery today and I felt compelled to sit down on the floor, my legs and feet didn't want to propel me forward anymore. Luckily, we made it home.
More about steroids, though - they're funny. I hear horror stories about people eating terrible things and eating a LOT - while I'll admit my appetite has been better than it usually is, I've been craving things like avocado/guacamole and this curry kraut made by a local company. I wonder what they taste like together... Heck, I even ate gorgonzola cheese on a salad yesterday and I liked it.
If I wasn't on this ALK study drug, handling steroid side effects would be MUCH easier. They usually prescribe Pepcid or something like it for the reflux, but I'm not supposed to take those things due to potential cardiac issues with the clinical trial drug. I got desperate tonight though, tired of the burning sore throat from stomach acid - I actually took a Pepcid tonight. I feel okay and don't plan on making a habit of it, but last night was so awful I didn't want a repeat later on tonight.
The surgery site for my port is looking good - it seems to be healing nicely. In a fit of desperation to ride my bike today, I biked the short distance to my office. It's about a mile and is normally no big deal, but when I had to get my upper body into the meager incline leading to the campus quad - I really felt a pretty significant ache in my shoulder where the port is. The pain went away after 5-10 minutes and there was no bleeding... But man, do I miss riding my bike. The legs are willing, but the arms don't want to play along yet. I also still have some pain reaching to the left side with my right arm. So far, this only comes into play when I shower - or if for some reason I'm trying to do it on purpose.
Tuesday is the set-up appointment for CyberKnife surgery. They'll do some scans and give me my plastic mask (I'm really looking forward to that one, yep. Sarcasm, by the way). It'll be a week or so before the real deal, so I get to mentally prepare... Some more. I'm so impatient. I want it now. I'm like Veruca Salt singing about her liver biopsy results, or something.
I want results...
I want Foundation...
Treatment, radiation
An Amish vacation!
GIVE IT TO ME NOW.
Labels:
ALK,
bicycling,
biopsy,
cancer,
clinical trial,
CyberKnife,
fatigue,
food,
radiation,
side effects,
steroids,
weekend
Friday, May 30, 2014
Welcome to my world.
Here I am.
I kept a journal at Caring Bridge from close to the time of my initial diagnosis, but their format has become cumbersome and tiring to keep up with, so I'm switching to Blogger. For those that are first-timers to my world of cancer, I was diagnosed with ALK+ Adenocarcinoma of the lung (NSCLC - or non small cell lung cancer). The ALK diagnosis was fortunate, in a way... I was able to receive treatment via oral chemotherapy that was targeted toward that particular genetic mutation.
The first treatment, Crizotinib or Xalkori - left me randomly nauseated and with visual issues. My health did improve drastically in the first month or so, in spite of random vomiting... Yeah, that wasn't fun. Unfortunately Xalkori failed me after only 3 months of treatment. I found this out because I'd been having chest pains and shortness of breath - it turned out that I had over a liter of fluid around my heart. I spent 14 days in the hospital.
I was presented with the most recent option, a study for a 3rd generation ALK clinical trial being put on by Hoffmann-LaRoche. This drug was miraculous. I started to ride my bike again. I had minimal side effects. I felt great. Then, the headaches came about a week or so ago. I chalked them up to allergies, but thought I'd mention it at my upcoming oncologist's appointment. I had an MRI of my brain one day prior to that appointment. The MRI was just standard protocol for the study - recently added, however.
Two days ago I was informed by my oncologist that I have four tumors in my brain. My primary cancer is lung, but that's mostly stable at this point. There was new growth in my liver, and the bone metastases seemed stable.
When your brain is involved, the dynamic of your treatment changes quickly and dramatically. Instantly, my participation in the clinical trial I'd been doing, was stopped. The Clinical Trials Nurse spoke with the study manager and was told that since the radiation treatment I will inevitably have is not palliative and instead is an effort to eradicate the cancer in my brain, I cannot receive this treatment in conjunction with the study.
Palliative care can be given in conjunction to cancer treatment. I think there's a stigma associated with the word 'palliative' because when I asked most people what they thought of when they heard the word - they said it made them think of hospice. So, palliative radiation would be given to alleviate pain in a given area - though the goal of that radiation may not be to cure the cancer altogether.
I'm meeting with a surgeon on Monday to discuss a liver biopsy. They want to know if the tumor mutated beyond the initial ALK mutation. They'll try to get a good enough sample to send to Foundation Medicine and try to understand why the clinical trial didn't work out so well for me. I'll also be getting a B-12 injection.. Later on in the week I will have a needle biopsy of my liver, and will also likely have a port installed for future chemotherapy.
I will meet with a neurosurgeon on Friday to discuss radiation therapy and devise a treatment plan. I'm just anxious to move on. Even if this treatment makes me weak/sick or bald - I don't mind it... I just want this cancer to be gone from my body.
I kept a journal at Caring Bridge from close to the time of my initial diagnosis, but their format has become cumbersome and tiring to keep up with, so I'm switching to Blogger. For those that are first-timers to my world of cancer, I was diagnosed with ALK+ Adenocarcinoma of the lung (NSCLC - or non small cell lung cancer). The ALK diagnosis was fortunate, in a way... I was able to receive treatment via oral chemotherapy that was targeted toward that particular genetic mutation.
The first treatment, Crizotinib or Xalkori - left me randomly nauseated and with visual issues. My health did improve drastically in the first month or so, in spite of random vomiting... Yeah, that wasn't fun. Unfortunately Xalkori failed me after only 3 months of treatment. I found this out because I'd been having chest pains and shortness of breath - it turned out that I had over a liter of fluid around my heart. I spent 14 days in the hospital.
I was presented with the most recent option, a study for a 3rd generation ALK clinical trial being put on by Hoffmann-LaRoche. This drug was miraculous. I started to ride my bike again. I had minimal side effects. I felt great. Then, the headaches came about a week or so ago. I chalked them up to allergies, but thought I'd mention it at my upcoming oncologist's appointment. I had an MRI of my brain one day prior to that appointment. The MRI was just standard protocol for the study - recently added, however.
Two days ago I was informed by my oncologist that I have four tumors in my brain. My primary cancer is lung, but that's mostly stable at this point. There was new growth in my liver, and the bone metastases seemed stable.
When your brain is involved, the dynamic of your treatment changes quickly and dramatically. Instantly, my participation in the clinical trial I'd been doing, was stopped. The Clinical Trials Nurse spoke with the study manager and was told that since the radiation treatment I will inevitably have is not palliative and instead is an effort to eradicate the cancer in my brain, I cannot receive this treatment in conjunction with the study.
Palliative care can be given in conjunction to cancer treatment. I think there's a stigma associated with the word 'palliative' because when I asked most people what they thought of when they heard the word - they said it made them think of hospice. So, palliative radiation would be given to alleviate pain in a given area - though the goal of that radiation may not be to cure the cancer altogether.
I'm meeting with a surgeon on Monday to discuss a liver biopsy. They want to know if the tumor mutated beyond the initial ALK mutation. They'll try to get a good enough sample to send to Foundation Medicine and try to understand why the clinical trial didn't work out so well for me. I'll also be getting a B-12 injection.. Later on in the week I will have a needle biopsy of my liver, and will also likely have a port installed for future chemotherapy.
I will meet with a neurosurgeon on Friday to discuss radiation therapy and devise a treatment plan. I'm just anxious to move on. Even if this treatment makes me weak/sick or bald - I don't mind it... I just want this cancer to be gone from my body.
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