Showing posts with label brain mets. Show all posts
Showing posts with label brain mets. Show all posts
Monday, January 19, 2015
Fighting the Good Fight
Today we visited the Radiation Oncologist to discuss Thursday's MRI. On the day of the scan itself, all we knew was that there were new spots (worms, except not really - it's cancer!) on the brain. We found out that the spots are "teeny tiny" and that they're not an immediate concern, considering I am on treatment for the lung and other mets (bone and liver) via chemotherapy.
We're giving copies of the MRI to my current oncologist to see what he thinks. Right now, the verdict is that the brain metastases are so minor and non threatening at this point, that the Radiation Oncologist wants to follow up in two months and see if anything has grown. My guess (as well as the doctor's) is that the liver is a greater risk/threat and should be stabilized/treated before we'd do anything for the brain. I'm excited for next week's scans to see what has happened. All I know is that overall (aside from the occasional nausea/pukefest) I'm feeling pretty good!
There was a time before I started this trial where I wondered if I'd ever know what it was like to not feel pain again. After two infusions and an adjustment in my pain medications, I started to feel better. Now, I'm exercising and am able to walk a lot more. Today, we walked quite a distance within the hospital and I walked with my husband to the parking garage, instead of having him pick me up. Right now I feel like I've got a little cold or something, because I'm sniffling a lot and it's been a little harder to breathe, but it doesn't feel like it's in my lungs. My O2 saturation is 99/100 and I don't have a fever at all. I'm treating that and just relaxing today.
I honestly expected the worst, today. It's easy to be pessimistic when you've been diagnosed with lung cancer only a day after a routine office visit. Nowadays, I prepare myself for the worst before every visit. I don't think of it as being negative, I think of it as being realistic. Today was a bit of good news, in my mind. Even if radiation is in my future, I feel like I know what to expect. I know if I get radiation, it's possible (if not likely, depending on the type of treatment) that I'll lose my hair. Big deal. All I really want to do is live - and if I have to deal with unpleasantries to survive, then that's what I have to do.
Either you accept that it's truly going to be a battle, or you don't. There really is no middle ground.
Thursday, October 23, 2014
High There
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.
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.
Labels:
appetite,
brain mets,
brain stem tumor,
chemo,
CyberKnife,
good news,
Marinol,
nausea,
progress,
stoned,
THC
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
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