Showing posts with label brain metastases. Show all posts
Showing posts with label brain metastases. Show all posts
Wednesday, August 10, 2011
And if I don't die or worse, I am going to need a nap.
"Those whom the gods would make crazy, they first make mad."
Sometimes I think cancer, and cancer treatment, were invented by some mischevious, minor god, to turn me into Job.
The latest round is the third reoccurance of brain metastases, this time tumorS. Multiple. What fun! So instead of having gamma knife surgery, which has relatively small side effects, except for cranial edema, I get to have whole brain radiation. Ooooo, goody. This makes eleven, count them, eleven, cancer treatments. Surgery, chemo, radiation. Hormone therapy. Chemo. Gamma knife. Chemo. Gamma knife. Chemo. Now WBR, and chemo number five. Don't you wish you were me?
Whole brain radiation, in particular, is designed expressly for me. I really dislike being nauseous. And I am very claustrophobic.
Very.
Soooo. The start? A several hour session where they fit me with a mask. This, oh goody, is so they can lock me, by my head, to the table, so I won't move during the radiation. Let's do dental surgery, and stick the whole deal into a cave, and yay! We can have all my phobias together! At once! They also wanted to strap down my feet. Oh, I'll hold still, believe me, if you DON'T tie my feet as well, thanks.
As it went on, the anxiety decreased, but didn't go away. I would pretend it didn't bother me, but my heart rate would double. And some days, my chin would quiver against the mask. Scared? Me? This is how the brain of a claustrophobic works: "OK. If the power goes out, AND the backup generator doesn't work, I've learned how to unhook the mask, and I will unclip it. If the machine breaks down, and overcooks me, I will unclip the mask, jump down (table is five feet off the deck) and get under the table." None of this is faintly likely to happen, but tell it to my reptile brain.
Luckily, the actual radiation was about 40 seconds, 20 seconds per side. I would count. 18 - 20 seconds per side, dependent on how anxious I was, and therefore how fast I counted. I always felt like I could smell burning hair, but the next to last day I realized it was probably whatever mysterious and funky plastic the mask was made out of. Carcinogenic, no doubt. Strangely enough, I am not particularly worried about secondary cancers.
The side effects are also designed for me, to drive me nuts. Nausea, which is generally not controlled by meds...because it's not caused by my stomach, it's caused by my brain. Burns on my head and ears. Burning on the skin INSIDE my ears, so they itch all the time. Hair loss...
And, instead of like chemo, where your hair all falls out in one dramatic, cartoonlike flump, it's patchy! Of course it started falling out on my crown. I looked like a mangy mouse. wertperch. Shave it all off. NOW. I look far better bald than with male pattern partial baldness, it turns out. Oh goody!
And absentmindedness.
What were we talking about?
So I start chemo number umpty lump next week. Lessee, I've done it 38 times. Is there some sort of medal for this? If I hit 50, could someone please give me a million bucks? And wertperch and I work through mounds of paperwork. And the lucky fellow, he gets to familiarize himself with not only our arcane pension plan, medical system, insurance, but also US taxes! Social security! Trusts and wills! Medical powers of attorney! What fun!
What were we talking about?
Still. I mostly do not feel sorry for myself, there are nastier diseases, I can think of several. MS. Lou Ghehrigs. Parkinsons. Glioblastoma. I have friends dealing with each.
Meanwhile, the three of us laugh a lot, and clown. wertperch is nearly as absentminded as me, and we walk around the house going have you seen the...thing....for the....thing? What was I doing? Why did I come in here? Why did I open a new browser?
And still, I would rather take this bullet than have someone else I love have it. As much as it is unpleasant, I like it 20 times more than having Tessie have cancer.
Be well.
Love,
grundoon
Wednesday, March 09, 2011
And now for something completely different
Dearly beloved,
Not really anything all that different. Just the latest update on the cancer treatment. Fourth bout of chemotherapy, eighth treatment. Surgery, radiation, two gamma knife surgeries. I'm going to run out of fingers to count on fairly soon.
This chemotherapy is not typical. By far the worst round was the first one, and it was the reaction to the Zeloda - a bone med. This most recent round was the third in a series of six, and I tried really hard to take it easy over the weekend. Amazingly, it worked, and I had a fairly easy day yesterday (day 4), in spite of the fact that I did ballet in the morning, went to work, and ran errands. I also took an hour of down time between ballet and heading to my office, which I don't usually do. I am almost getting the hang of this after five years - sitting still has never been my long suit.
So I'm now half way through this chemotherapy. I'll have another PET/CT scan in the next week or so. If I'm responding (cancer visibly going away), we finish this chemo, which will go until May 3, and then I get a break for a while. If there's not much change, I'll switch to a different chemo, probably Xometa, which is an oral chemo drug. If it looks nasty, and the cancer has progressed, I'll go on two - Xometa and Gemzar. More likely to get a response, but more side effects. Let's hope the PET scan looks good.
The most recent PET scan had one anomaly - the bone stuff was pretty consistent in glucose uptake, except for one, in my left hip socket, which was much higher than all the others. My wonderful family practice doc asked the right questions, and we realized that I had taken a really hard fall the week before the scan, and landed on my left elbow and knee - one the sidewalk outside of the grocery store. Very dignified. (And tore a hole in the elbow of my favorite cashmere sweater, dammit.) But the hip socket, we hope, was just a bruise from the fall, rather than another bone metastasis. From what I understand from the Metastatic Breast Cancer Babes, hips tend to be the place where you feel pain, because of the weight bearing. So I'm curious to see if the numbers go down, particularly that one.
I also saw my neurosurgeon yesterday, and that is mostly good news. Biggest one is that I can wean off of the damned steroid! Hurrah! He and I talked about it, and apparently when I get down to half a mg (I'm at two) I'll switch to hydrocortisone, or something? As one doctor friend pointed out last summer, my pituitary has apparently forgotten how to work, and needs to be noodged to start working again before I go completely off of the steroid. Amongst other things, I remember back in December when I was decreasing the dose, and there's definitely elements of withdrawal, much as I hate the side effects. The neuro said if I decrease too fast, I'll feel like hell. His words, which was pretty funny. Out of character.
Why do cancer docs get more human as they treat you? I thought this guy was a pretty cold fish the first few times I met him - young, handsome, a neurosurgeon (no ego there) and gay as a tree full of monkeys. He didn't seem to have the vaguest interest in me, although apparently, like everyone else on the world, he liked Kevin's accent.
But i managed to break through the facade on this visit. I made a wild guess, and asked him if he was the one in the practice interested in architecture and design. He lit up, and said yes, he's been remodeling his house here in Sac for years. I laughed, and said that Metropolis magazine was not the most common doctors' office waiting room reading. I also got to have my vitals taken by Sergio (unprouncable last name), from Russia, whose accent I want to steal. I guess I spend so much time in doctors' offices that I have to take my fun where I find it. It also turns out the neurosurgeon is mostly unavailable because he is only in clinic two half days - all the rest of the time he's doing surgery. Can you imagine spending four days a week cutting people's skulls open? I can't.
Love,
Chris
Not really anything all that different. Just the latest update on the cancer treatment. Fourth bout of chemotherapy, eighth treatment. Surgery, radiation, two gamma knife surgeries. I'm going to run out of fingers to count on fairly soon.
This chemotherapy is not typical. By far the worst round was the first one, and it was the reaction to the Zeloda - a bone med. This most recent round was the third in a series of six, and I tried really hard to take it easy over the weekend. Amazingly, it worked, and I had a fairly easy day yesterday (day 4), in spite of the fact that I did ballet in the morning, went to work, and ran errands. I also took an hour of down time between ballet and heading to my office, which I don't usually do. I am almost getting the hang of this after five years - sitting still has never been my long suit.
So I'm now half way through this chemotherapy. I'll have another PET/CT scan in the next week or so. If I'm responding (cancer visibly going away), we finish this chemo, which will go until May 3, and then I get a break for a while. If there's not much change, I'll switch to a different chemo, probably Xometa, which is an oral chemo drug. If it looks nasty, and the cancer has progressed, I'll go on two - Xometa and Gemzar. More likely to get a response, but more side effects. Let's hope the PET scan looks good.
The most recent PET scan had one anomaly - the bone stuff was pretty consistent in glucose uptake, except for one, in my left hip socket, which was much higher than all the others. My wonderful family practice doc asked the right questions, and we realized that I had taken a really hard fall the week before the scan, and landed on my left elbow and knee - one the sidewalk outside of the grocery store. Very dignified. (And tore a hole in the elbow of my favorite cashmere sweater, dammit.) But the hip socket, we hope, was just a bruise from the fall, rather than another bone metastasis. From what I understand from the Metastatic Breast Cancer Babes, hips tend to be the place where you feel pain, because of the weight bearing. So I'm curious to see if the numbers go down, particularly that one.
I also saw my neurosurgeon yesterday, and that is mostly good news. Biggest one is that I can wean off of the damned steroid! Hurrah! He and I talked about it, and apparently when I get down to half a mg (I'm at two) I'll switch to hydrocortisone, or something? As one doctor friend pointed out last summer, my pituitary has apparently forgotten how to work, and needs to be noodged to start working again before I go completely off of the steroid. Amongst other things, I remember back in December when I was decreasing the dose, and there's definitely elements of withdrawal, much as I hate the side effects. The neuro said if I decrease too fast, I'll feel like hell. His words, which was pretty funny. Out of character.
Why do cancer docs get more human as they treat you? I thought this guy was a pretty cold fish the first few times I met him - young, handsome, a neurosurgeon (no ego there) and gay as a tree full of monkeys. He didn't seem to have the vaguest interest in me, although apparently, like everyone else on the world, he liked Kevin's accent.
But i managed to break through the facade on this visit. I made a wild guess, and asked him if he was the one in the practice interested in architecture and design. He lit up, and said yes, he's been remodeling his house here in Sac for years. I laughed, and said that Metropolis magazine was not the most common doctors' office waiting room reading. I also got to have my vitals taken by Sergio (unprouncable last name), from Russia, whose accent I want to steal. I guess I spend so much time in doctors' offices that I have to take my fun where I find it. It also turns out the neurosurgeon is mostly unavailable because he is only in clinic two half days - all the rest of the time he's doing surgery. Can you imagine spending four days a week cutting people's skulls open? I can't.
Love,
Chris
Sunday, February 06, 2011
One day I will step out of my body, and burst into bloom...
It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.
However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.
The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.
Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.
But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.
Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.
I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.
Fooey.
Love,
grundoon
p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.
However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.
The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.
Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.
But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.
Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.
I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.
Fooey.
Love,
grundoon
p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.
Sunday, November 14, 2010
Dearly beloved,
Gamma knife went fairly smoothly. I'd forgotten how unpleasant having the halo put on was. They really ratchet that sucker on tightly. Once it's on, it's not that big a deal other than it makes your head heavy. The MRI seemed to take a long time, and it was uncomfortable because my back was sore. The gamma knife itself? Seven minutes. Sort of anti-climactic. Extremely. I was really scared about this one.
The MOST unpleasant part, in my opinion, is when they take the halo OFF. Fifteen minutes of intense, insane pressure headache. I was rubbing my forehead, covering my eyes, and still so painful that I thought I might hurl. But then the pressure evens out, and it goes away. It's a pretty miraculous technology.
Up and around that afternoon, hanging out with friends in a lawn chair in the living room (I wanted to prop my feet up....And four bruises on my skull, two in front, two back in my hair. I hope I don't lose any hair permanently. The steroid didn't seem to make me nearly as hyper, I got two decent nights' sleep. I did fall asleep during last night's ballet, as well, but it was sort of...not dull, but repetitive. Great dancers, I was just too exhausted.
Not too bad a case of the jitters. It may be that I've already adjusted to the slightly higher dose that I'm on. Very curious to see the next MRI, and how that one looks down the road. Dances with SQUIDBRAINS!
IF anyone sees adult tutus or long, full prom dress at their local second hand store for under 10 dollahs, send them my way.
Hugs to all,
grundoon
Friday, October 08, 2010
So this bald girl walked into a bar
October 8, 2010
Cancer treatment and testing, somewhat oversimplified, is generally not about good news.
Especially when you've been doing it for a while, there tends to be a generally binary state of affairs - things have stayed the same (good) or gotten worse. (bad.) You get actual GOOD good news once in a while, but not very often.
Recently, I had a test where I got actual good news, and I have to say I'm not quite sure I believe it completely. Let me see, dearly beloved, if I can give you a feel for this.
2005.
You have a lump under your arm. Get breast exam.
You have a breast exam. Could be something suspicious.
You have mammogram. Could be lump. Biopsy, yes, it is cancer yes, there are two tumors, yes, lymph nodes involved, yes. You have shot from cancer free on February 24 to Stage 3 breast cancer in just about two weeks, and have surgery on March 17.
Every test, of that series, was not just yes, sorry, you have that, but yes, we need to do another test to see if it's worse than that. Yes.
Chemo, radiation, bal bla blah, most of this is in other places. This is a five year back summary,you go look up the details.
2006 and 2007
Tamoxifen, and a bit of a breather. About a year to return to a normal sense of "health", and oooorg, mammograms. Looks about the same. Yay!
2008
Suspicious bump over my right collarbone, fine needle biopsy. No cancer! Cool! Go off on summer vacation.
Get back in September. Bump is bigger, nice results, and I don't entirely trust the test. Bully doctor into gettin re-tested. Core biopsy. Yup, there's cancer.
Ocober 5, 2008.
DiagnosisRecurrent breast cancer. Spreading through the lymph nodes behind my collarbone, neck, and chest. Oddly enough, I finished radiation on October 4, 2008, so if I'd made it five years, we would have celebrated that date in 2010. Identifed the recurrence three years to the day after.
This is now recurrent, metastatic cancer. October until March, 2009.
Chemotherapy again, and being something of a viking, I go 15 rounds instead of 12, in the hopes of whomping it out completely. Looks pretty good. We all know that the chances of getting rid if it completely are pretty slim.
MRI, CT scan, or PET scan now every three months. Cool piccies of chest, but ooog, those lymph nodes. Same, same, same.
2009 and 2010
January show up for a regular checkup with oncologist, and I've been having a few more headaches. He said the anti-magic words - ' "It's probably nothing but..." let's rule out brain metastasis.' Now, every time in this whole series, any time a doctor said, It's probably nothing but.."it's like a whammy....iiiiit's been something. a lump, cancer, a dvt..and I went, aw, shit. brain tumor.
Sure enough! Littlle boogers had crossed into my brain - a tumor about the size of a cherry. No wonder I had headaches. So the new adventure of gamma knife radiation, and my new favorite doctor title, medical physicist. My rocket scientist can kick your rocket scientist's ASS. And did I mention the lovely headgear?
Waiting, testing, pretty piccies of my brain. The odds of having cancer go completely away when you have metastatic breast cancer are roughly on the order of 3 percent. You don't talk much about it going away. You talk about maintenance. You don't talk about retiring at 55, but you get your paperwork in order.
Flat rate - 50 percent of people diagnosed with metastatic breast cancer die in 22 months.
Just for fun, lets round that up to, say, two years. Where does that put us from October 5, 2008? Oh, yes, 2010.
October 5, 2010. I had a CT scan on October 4. By pretty much finagling, and brutalizing my doctors by phone, I manage to get preliminary results.
The CT scan shows no evidence of recurrent or metastatic breast cancer.
Caveat, caveat, caveat. This has not yet been compared to the previous scan.
BUT.
If this is true, it's a BIG improvement. The little baddie in my brain is slowly fading away, exactly as it's supposed to after gamma knife treatment. If this is TRUE, it's actually a radical IMPROVEMENT.
For three days, I can say, for the first time in five years, some doctor just told me I don't have cancer.
As I said, in a couple weeks we get more detail, this many not be strictly true. In the mean time, I'm enjoying the hell out of saying it.
So this bald girl walked into a bar.....
Cancer treatment and testing, somewhat oversimplified, is generally not about good news.
Especially when you've been doing it for a while, there tends to be a generally binary state of affairs - things have stayed the same (good) or gotten worse. (bad.) You get actual GOOD good news once in a while, but not very often.
Recently, I had a test where I got actual good news, and I have to say I'm not quite sure I believe it completely. Let me see, dearly beloved, if I can give you a feel for this.
2005.
You have a lump under your arm. Get breast exam.
You have a breast exam. Could be something suspicious.
You have mammogram. Could be lump. Biopsy, yes, it is cancer yes, there are two tumors, yes, lymph nodes involved, yes. You have shot from cancer free on February 24 to Stage 3 breast cancer in just about two weeks, and have surgery on March 17.
Every test, of that series, was not just yes, sorry, you have that, but yes, we need to do another test to see if it's worse than that. Yes.
Chemo, radiation, bal bla blah, most of this is in other places. This is a five year back summary,you go look up the details.
2006 and 2007
Tamoxifen, and a bit of a breather. About a year to return to a normal sense of "health", and oooorg, mammograms. Looks about the same. Yay!
2008
Suspicious bump over my right collarbone, fine needle biopsy. No cancer! Cool! Go off on summer vacation.
Get back in September. Bump is bigger, nice results, and I don't entirely trust the test. Bully doctor into gettin re-tested. Core biopsy. Yup, there's cancer.
Ocober 5, 2008.
DiagnosisRecurrent breast cancer. Spreading through the lymph nodes behind my collarbone, neck, and chest. Oddly enough, I finished radiation on October 4, 2008, so if I'd made it five years, we would have celebrated that date in 2010. Identifed the recurrence three years to the day after.
This is now recurrent, metastatic cancer. October until March, 2009.
Chemotherapy again, and being something of a viking, I go 15 rounds instead of 12, in the hopes of whomping it out completely. Looks pretty good. We all know that the chances of getting rid if it completely are pretty slim.
MRI, CT scan, or PET scan now every three months. Cool piccies of chest, but ooog, those lymph nodes. Same, same, same.
2009 and 2010
January show up for a regular checkup with oncologist, and I've been having a few more headaches. He said the anti-magic words - ' "It's probably nothing but..." let's rule out brain metastasis.' Now, every time in this whole series, any time a doctor said, It's probably nothing but.."it's like a whammy....iiiiit's been something. a lump, cancer, a dvt..and I went, aw, shit. brain tumor.
Sure enough! Littlle boogers had crossed into my brain - a tumor about the size of a cherry. No wonder I had headaches. So the new adventure of gamma knife radiation, and my new favorite doctor title, medical physicist. My rocket scientist can kick your rocket scientist's ASS. And did I mention the lovely headgear?
Waiting, testing, pretty piccies of my brain. The odds of having cancer go completely away when you have metastatic breast cancer are roughly on the order of 3 percent. You don't talk much about it going away. You talk about maintenance. You don't talk about retiring at 55, but you get your paperwork in order.
Flat rate - 50 percent of people diagnosed with metastatic breast cancer die in 22 months.
Just for fun, lets round that up to, say, two years. Where does that put us from October 5, 2008? Oh, yes, 2010.
October 5, 2010. I had a CT scan on October 4. By pretty much finagling, and brutalizing my doctors by phone, I manage to get preliminary results.
The CT scan shows no evidence of recurrent or metastatic breast cancer.
Caveat, caveat, caveat. This has not yet been compared to the previous scan.
BUT.
If this is true, it's a BIG improvement. The little baddie in my brain is slowly fading away, exactly as it's supposed to after gamma knife treatment. If this is TRUE, it's actually a radical IMPROVEMENT.
For three days, I can say, for the first time in five years, some doctor just told me I don't have cancer.
As I said, in a couple weeks we get more detail, this many not be strictly true. In the mean time, I'm enjoying the hell out of saying it.
So this bald girl walked into a bar.....
Sunday, October 03, 2010
Sometimes it leaks through the cracks
Dearly beloved,
The following is just a kvetch and rant - I don't need you to do anything, I just need to get it out of my system.
I am tired, cross, and hating cancer and treatment, and everything that goes with it. If anything, for me, dealing with being on a steroid is at least as awful as being on chemotherapy, and it's looking like three more months of the steroid...and if this CT scan doesn't go so well tomorrow, I get to restart chemotherapy also.
The last two weeks have really sucked beyound belief. I had a seizure...I can't drive for three months. It took almost two weeks for them to get my e-mail going at work, so I'm behind just a little bit. We're trying to move in, paying bills, getting Tess going in 7th grade...and I feel like I'm gritting my teeth with exhaustion and rage every moment.
Last week I came down with a cold. The house is in chaos. Getting a cold is usually my body's way of saying, "Tougho lucko, kid, You are in bed for three days, and all that emotional baggage that you haven't been dealing with? HERE IT IS." Sooo, just for fun, on top of everything else, I was up a lot of the night, and what I mostly want to do is cry and kick things. Rage and grief, oh GOODY my two MOST favorite emotional states. (Sarchasm, and I do mean CHASM). I need some walnuts to crush, bottles to break, and large, dangerous firearms to discharge in a safe and remote environment. Anyone have a recommendation about dispelling anger in a way that doesn't slop it onto other people? Anyone got something they want blown up?
The steroid is rough because it causes emotional and mood side effects ALL of which I dislike in myself. Hypes me up. Makes it harder for me to listen. Puffs up my face which I KNOW sounds totally trivial, but in this strange way, its not, because it's a constant reminder, everytime I look in the mirror. Hullo, hyper cancer face! How are you? Bloating, weird appetite, irritability....I know part of the irritability is fromn the steroid - but I'm not sure that knowledge makes it any easier to manage, emotionally.
Not to mention the insomnia from hell. I average four hours of sleep at a time. Friday I slept for seven, and that's the first time I remember sleeping for seven consecutive hours since...probably mid-june, when I went on the steroid? At matinenda I was typically getting four at a stretch. So add constant sleep deprivation to the rest of the list.
I feel like I can cope with most physical side effects, but the mood and emotional stuff is a bit much. Stay the hell out of my PSYCHE, you drugs!
I cope and I cope and I cope. And right now I really wish I didn't have to. I know if I have to start chemo I'll manage. Waiting to find out is hateful.
I should know by the end of this week what the regimen is, and there's a chance that chemotherapy combined with the steroid will be slightly easier than either alone. ( I know, I know, unlikely - and if you know for sure, don't tell me. Idle hope is the last refuge of...)
But the layers get thick. Not the treatment itself, but the ripples out from it. I can't drive for a while - suddenly I have to find car pools, Tess has no pickup from ballet, any errand I have to do either on foot or bike...blah blah blah.
I just got eyebrows. I really don't care about hair, but I love having eyebrows.
I don't need any of you to do anything about this.
I just needed to vent, and have you nod, and either say we understand, or we don't really understand, because we aren't in your shoes, but it's okay for you to tell us this, to let us see the rage and grief, as well as the courage and tomfoolery.
The other thing is next time we bump into each other, if it's just the two of us, ask me if I need a half an hour to vent. I tend to mostly keep this state to myself with more than one person around, so from my end it requires a quiet cup of tea, not a party. And while I'm at it, if you don't know me personally, ask someone around you, who is dealing with chronic disease, if they need to vent. You might be surprised by what you learn.
The following is just a kvetch and rant - I don't need you to do anything, I just need to get it out of my system.
I am tired, cross, and hating cancer and treatment, and everything that goes with it. If anything, for me, dealing with being on a steroid is at least as awful as being on chemotherapy, and it's looking like three more months of the steroid...and if this CT scan doesn't go so well tomorrow, I get to restart chemotherapy also.
The last two weeks have really sucked beyound belief. I had a seizure...I can't drive for three months. It took almost two weeks for them to get my e-mail going at work, so I'm behind just a little bit. We're trying to move in, paying bills, getting Tess going in 7th grade...and I feel like I'm gritting my teeth with exhaustion and rage every moment.
Last week I came down with a cold. The house is in chaos. Getting a cold is usually my body's way of saying, "Tougho lucko, kid, You are in bed for three days, and all that emotional baggage that you haven't been dealing with? HERE IT IS." Sooo, just for fun, on top of everything else, I was up a lot of the night, and what I mostly want to do is cry and kick things. Rage and grief, oh GOODY my two MOST favorite emotional states. (Sarchasm, and I do mean CHASM). I need some walnuts to crush, bottles to break, and large, dangerous firearms to discharge in a safe and remote environment. Anyone have a recommendation about dispelling anger in a way that doesn't slop it onto other people? Anyone got something they want blown up?
The steroid is rough because it causes emotional and mood side effects ALL of which I dislike in myself. Hypes me up. Makes it harder for me to listen. Puffs up my face which I KNOW sounds totally trivial, but in this strange way, its not, because it's a constant reminder, everytime I look in the mirror. Hullo, hyper cancer face! How are you? Bloating, weird appetite, irritability....I know part of the irritability is fromn the steroid - but I'm not sure that knowledge makes it any easier to manage, emotionally.
Not to mention the insomnia from hell. I average four hours of sleep at a time. Friday I slept for seven, and that's the first time I remember sleeping for seven consecutive hours since...probably mid-june, when I went on the steroid? At matinenda I was typically getting four at a stretch. So add constant sleep deprivation to the rest of the list.
I feel like I can cope with most physical side effects, but the mood and emotional stuff is a bit much. Stay the hell out of my PSYCHE, you drugs!
I cope and I cope and I cope. And right now I really wish I didn't have to. I know if I have to start chemo I'll manage. Waiting to find out is hateful.
I should know by the end of this week what the regimen is, and there's a chance that chemotherapy combined with the steroid will be slightly easier than either alone. ( I know, I know, unlikely - and if you know for sure, don't tell me. Idle hope is the last refuge of...)
But the layers get thick. Not the treatment itself, but the ripples out from it. I can't drive for a while - suddenly I have to find car pools, Tess has no pickup from ballet, any errand I have to do either on foot or bike...blah blah blah.
I just got eyebrows. I really don't care about hair, but I love having eyebrows.
I don't need any of you to do anything about this.
I just needed to vent, and have you nod, and either say we understand, or we don't really understand, because we aren't in your shoes, but it's okay for you to tell us this, to let us see the rage and grief, as well as the courage and tomfoolery.
The other thing is next time we bump into each other, if it's just the two of us, ask me if I need a half an hour to vent. I tend to mostly keep this state to myself with more than one person around, so from my end it requires a quiet cup of tea, not a party. And while I'm at it, if you don't know me personally, ask someone around you, who is dealing with chronic disease, if they need to vent. You might be surprised by what you learn.
Tuesday, September 14, 2010
MRI, redux.
And here's the groovy colorzed version, But IS IT ART?
I get to see the other MRI today, and talk to the oncologist about it. Interesting.
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