Results from last week's scan indicated increased metabolic activity at the original site (vaginal cuff) as well as in the liver. An icing on the cake of this news was that there is also a new spot on the right lobe of the liver. So that means (drum roll please) MORE CHEMO!! Same Old Shit. Trying new drug combo this time. Honestly not sure if that means I've hit the point of the body's resistance to the drugs I was on, or if the doc figured out that the first combo platter just wasn't the right choice; I will likely never know, since straight answers are hard to find.
Again wondering if I'm ever going to get used to hearing this type of news. I always have hope; there are always "signs" of healing/improvement that are apparently a mental game I'm playing on myself. Does that hope go away after being kicked in the teeth a given number of times?
This particular call came as I was riding in the car on the way home from a short and restless vacation/getaway, which means my family got to hear the news with me. It was a somewhat horrific scene, which I would have played differently if the fam wasn't within earshot of one side of the conversation. Almost immediately after I conveyed an abbreviated version of the news delivered by my doc's nurse, my strong and fiercely independant teenager started sobbing and repeating "you can't leave; I NEED you" which is enough to break any mother's heart in two.
The conversation continued later that night in the safety of her bedroom, and again the phrases "I need you" and "dad needs you" kept coming up. And while I tried my best to dissuade the notion that our lives revolve around me, the truth was hovering in the room. When your immediate family is a threesome, losing one of the three is is bound to have a major impact that I cannot control. And while I mutter comforting statements designed to relieve the fear of the unknown, my heart is ripping in half because I know that I may very well not be here to make sure she finishes high school with good grades and good friends. I may not be here to do everything I can to make sure she gets a good SAT score and gets into a college of her choice. I won't be able to influence the type of men she dates; I won't be able to help her get ready on her wedding day. All of it rips up my guts, but I smile bravely and tell her everything will be OK.
Sunday, August 25, 2013
Saturday, July 20, 2013
Them or me?
No medical news, and tired of talking about it anyway...so I find the other thing most frequently rattling around in my semi-functional brain lately is how to help others deal with my illness. Which, by the way, is still just so damn weird. I look fine (as fine as an overweight, middle aged bald chick can look), I feel fine (when chemo hasn't kicked my ass), so can't we just ignore the looming dark cloud? Speak around the elephant in the room?
Not to mention, it's really easy to get sucked into a focus on ME, ME, ME. After all, I'm the one dying here--can't the rest of the world bend over and kiss my ass please?
It's a struggle to remember that those around me, at least the ones who really care about me, are hurting too. I try to get inside their head and figure out--are they really dealing with it? Or are they pretending its not happening? Do they think about what life will be like without me in it? Is there sadness? Anxiety? Or do they fly through the days focusing on other things so they don't have to think about it?
It's like this huge task called "Helping Other People Deal" is out there--waiting for me to take it on. But I don't have the energy. Or the skills. I don't know where to start. And why do I have to do this anyway? Can't you figure out how to do it on your own for once? Do I have to do everything around here?
Not to mention, it's really easy to get sucked into a focus on ME, ME, ME. After all, I'm the one dying here--can't the rest of the world bend over and kiss my ass please?
It's a struggle to remember that those around me, at least the ones who really care about me, are hurting too. I try to get inside their head and figure out--are they really dealing with it? Or are they pretending its not happening? Do they think about what life will be like without me in it? Is there sadness? Anxiety? Or do they fly through the days focusing on other things so they don't have to think about it?
It's like this huge task called "Helping Other People Deal" is out there--waiting for me to take it on. But I don't have the energy. Or the skills. I don't know where to start. And why do I have to do this anyway? Can't you figure out how to do it on your own for once? Do I have to do everything around here?
Sunday, June 2, 2013
And the answer is....
While there is some improvement seen, there is still cancerous activity evidenced on the scan. Liver lesion is still there, as is the tumor at the original site.
I can't adquately describe the feeling of hearing the news. Certainly not what I wanted to hear. More chemo in the very near future means that cancer will remain in the front seat, as opposed to the rear of the bus where I had hoped to seat it, at least temporarily.
In comparison to other metastatic cancer patients, I'm fairly fresh into this. I imagine multiple iterations of this scene. Does the news get any easier over time?
I wanted to hear 'go enjoy your summer', not '3 to 6 more rounds'.
Late spring/early summer weather is here, and it is beautiful. I try to enjoy it without thinking about if this is the last time I'll see this welcome change of seasons. I resist the urge to find a tall cliff from which I can scream from the top of. I hold it together and keep on plugging along.
I can't adquately describe the feeling of hearing the news. Certainly not what I wanted to hear. More chemo in the very near future means that cancer will remain in the front seat, as opposed to the rear of the bus where I had hoped to seat it, at least temporarily.
In comparison to other metastatic cancer patients, I'm fairly fresh into this. I imagine multiple iterations of this scene. Does the news get any easier over time?
I wanted to hear 'go enjoy your summer', not '3 to 6 more rounds'.
Late spring/early summer weather is here, and it is beautiful. I try to enjoy it without thinking about if this is the last time I'll see this welcome change of seasons. I resist the urge to find a tall cliff from which I can scream from the top of. I hold it together and keep on plugging along.
Friday, May 24, 2013
Still waiting
Another update in the off chance that there are any readers of this pathetic blog still out there. Not a lot of news. In a nutshell: chemo, chemo, chemo, scan. chemo, chemo, chemo scan. Currently waiting for the next scan date to roll around after completing round 6 (but who's counting?).
Playing in my head how I'll answer inquires re: the results. 1) NED--asker will be happy; I'll pretend to be. I won't tell them that this only buys me a brief respite from chemo, but in all likelihood its just that.
2) Cancerous activity still present--asker will say 'that sucks'. I'll say yes...yes, it does.
I've been doing a lot of "cancer reading". This, as opposed to reading I'd really prefer to be doing..something fluffy and entertaining that my brain won't have to think too much about.
Anway, I've read everything from the '50 things you must do', most of which consisted of positive thinking, positive imaging, curing your cancer with positive thoughts, blah blah blah. I kept thinking of all the people who have died from cancer and how positive they were to the bitter end. It's easy to preach positivity when you no longer have cancer. Another book suggested that cancer was crazy and sexy. Not.
Read a lot of upbeat little words of wisdom for cancer patients. All of this is making me want to puke. I have a couple more...haven't made it thru the 'love and miracles' genre yet. I just gotta quit buying used books from Amazon.
The best advice I've run into came from a family therapist my oncologist recommended.
I paraphrase......If you're not actively dying, you're living. Get all the logistical crap associated with dying behind you so you can focus on living.
I'm living!
Playing in my head how I'll answer inquires re: the results. 1) NED--asker will be happy; I'll pretend to be. I won't tell them that this only buys me a brief respite from chemo, but in all likelihood its just that.
2) Cancerous activity still present--asker will say 'that sucks'. I'll say yes...yes, it does.
I've been doing a lot of "cancer reading". This, as opposed to reading I'd really prefer to be doing..something fluffy and entertaining that my brain won't have to think too much about.
Anway, I've read everything from the '50 things you must do', most of which consisted of positive thinking, positive imaging, curing your cancer with positive thoughts, blah blah blah. I kept thinking of all the people who have died from cancer and how positive they were to the bitter end. It's easy to preach positivity when you no longer have cancer. Another book suggested that cancer was crazy and sexy. Not.
Read a lot of upbeat little words of wisdom for cancer patients. All of this is making me want to puke. I have a couple more...haven't made it thru the 'love and miracles' genre yet. I just gotta quit buying used books from Amazon.
The best advice I've run into came from a family therapist my oncologist recommended.
I paraphrase......If you're not actively dying, you're living. Get all the logistical crap associated with dying behind you so you can focus on living.
I'm living!
Wednesday, April 17, 2013
Waiting, waiting, waiting, the new normal
Cancer update: In the middle of current chemo round 5. Things are going pretty well, considering this is day 3 and I feel good. Progress, I'd say. Maybe this old bod is getting used to the routine of being walloped every 3 weeks with this strange combination of unknowns.
In the middle of a never-ending winter here...nearly to May with snow still on the ground and more coming our way soon. Saw a random sign of spring this AM which inspired me to write. A very plump chested robin scrounging in my still snow-covered flower bed. Looking and hoping and waiting....just like me.
Learning to live with the uncertainty of metastatic cancer patients everywhere. Doing what I'm told, wondering if it's enough, wondering if I should be doing more to save myself. Well meaning friends and relatives are sending me diets to try....starve the cancer cells, feed the good cells, eat protein, don't eat meat, eat dairy, don't eat dairy. It's all overwhelming to me, and I don't know whether to ignore them all or try everything. So instead I do nothing different....trusting my fate to an oncologist who really doesn't seem to give a damn whether I live or die.
Ticking things off the "to-do" list makes me feel productive, so spending my pre-chemo morning hours doing just that. Back to work tomorrow, so nothing life-changing gets done then...
News from the doc this week was that after #6, we'll scan again and determine whether we do:
1) Nothing because scan now indicates NED
2) Back to more chemo if activity still exists
No surgery option, according to her although I could have sworn the liver doc said we'd revisit after chemo. Found some other options on-line ( I know, I know.....don't ever visit Dr.Google).....chemoembolism, liver tumor ablation, etc. Worth checking? Hate to step on doc's toes, but then again it's my life at stake. Decided to wait and see what next scan says, then proceed.
All this waiting around is testing my admittedly short patience level.
Me and the robin....waiting for the thaw.
In the middle of a never-ending winter here...nearly to May with snow still on the ground and more coming our way soon. Saw a random sign of spring this AM which inspired me to write. A very plump chested robin scrounging in my still snow-covered flower bed. Looking and hoping and waiting....just like me.
Learning to live with the uncertainty of metastatic cancer patients everywhere. Doing what I'm told, wondering if it's enough, wondering if I should be doing more to save myself. Well meaning friends and relatives are sending me diets to try....starve the cancer cells, feed the good cells, eat protein, don't eat meat, eat dairy, don't eat dairy. It's all overwhelming to me, and I don't know whether to ignore them all or try everything. So instead I do nothing different....trusting my fate to an oncologist who really doesn't seem to give a damn whether I live or die.
Ticking things off the "to-do" list makes me feel productive, so spending my pre-chemo morning hours doing just that. Back to work tomorrow, so nothing life-changing gets done then...
News from the doc this week was that after #6, we'll scan again and determine whether we do:
1) Nothing because scan now indicates NED
2) Back to more chemo if activity still exists
No surgery option, according to her although I could have sworn the liver doc said we'd revisit after chemo. Found some other options on-line ( I know, I know.....don't ever visit Dr.Google).....chemoembolism, liver tumor ablation, etc. Worth checking? Hate to step on doc's toes, but then again it's my life at stake. Decided to wait and see what next scan says, then proceed.
All this waiting around is testing my admittedly short patience level.
Me and the robin....waiting for the thaw.
Sunday, March 24, 2013
Still kicking
Hello world of cancer blog readers; my apologies for being AWOL for quite some time here. I've been pretty busy plugging along...going to chemo, going to work, going nuts in my own head trying to figure out how to deal with all of this.
Also busy making lists of things I have to get done before I die; who would have thought I (who ME?) would have been making THAT list.....refinance the mortgage, figure out how your spouse goes about getting your 401k, setting up that college savings plan I've been meaning to do for years now, write an obituary, join a church, find a lawyer, write a will, think of songs for my funeral, look into prepaid funeral plans, reach out to old friends. It goes on and on. It's a hefty list. I'm pretty good at avoiding most of them. All these critical things that need to be done. I sleep better knowing they're on a list somewhere but I don't actually accomplish any of them. I hunt for new recipes on Pinterest, I email friends, I waste time on Facebook, I read entertaining novels and avoid the cancer stuff I "should" be reading.
Don't get me wrong, I'm still fighting to live. But dying is never far from my thoughts.
It's a monumental thing to get your head around. It consumes me, and on bad days I wonder if I need some kind of therapy to help me with dying. On good days I wonder what if the doctors are all wrong, what if I can beat the odds and be that one that makes it. Got good news this week, PET scan after round 3 reveals "favorable response to treatment". That means we continue with rounds 4, 5 and 6. I was ridiculously happy about this for a whole day. Then I started having doubts....can I make it? I think I can, I think I can. I have no choice. I can do this.
Also busy making lists of things I have to get done before I die; who would have thought I (who ME?) would have been making THAT list.....refinance the mortgage, figure out how your spouse goes about getting your 401k, setting up that college savings plan I've been meaning to do for years now, write an obituary, join a church, find a lawyer, write a will, think of songs for my funeral, look into prepaid funeral plans, reach out to old friends. It goes on and on. It's a hefty list. I'm pretty good at avoiding most of them. All these critical things that need to be done. I sleep better knowing they're on a list somewhere but I don't actually accomplish any of them. I hunt for new recipes on Pinterest, I email friends, I waste time on Facebook, I read entertaining novels and avoid the cancer stuff I "should" be reading.
Don't get me wrong, I'm still fighting to live. But dying is never far from my thoughts.
It's a monumental thing to get your head around. It consumes me, and on bad days I wonder if I need some kind of therapy to help me with dying. On good days I wonder what if the doctors are all wrong, what if I can beat the odds and be that one that makes it. Got good news this week, PET scan after round 3 reveals "favorable response to treatment". That means we continue with rounds 4, 5 and 6. I was ridiculously happy about this for a whole day. Then I started having doubts....can I make it? I think I can, I think I can. I have no choice. I can do this.
Sunday, February 17, 2013
The depths
OK, so I realize that the way to keep readers returning to a blog is probably not to post something randomly only every month or so. So forgive me for doing just that, but actively writing about my situation is not something I can force myself to do very often.
I am so tired of thinking, breathing, living every moment of my life with cancer at the forefront.
Every day when I wake up there is this slight moment when I think it was all a dream.
Thank God it's not real. Then the moment passes and it all becomes real again. I feel a cold breeze on my bare head and neck and go "oh yeah, shit....I don't have any hair".
A lot has happened since I last posted; in a nutshell:
2 chemo cycles down, 1 more to go before another scan to see if this agony is even doing any good.
Somewhere in there, I went to the Mayo Clinic for a second opinion. Ironic that I live fairly close to the best health care in America.
I was impressed with the magnitude of the place and the knowledge there; but it was also a little depressing--seeing so many people there just trying to stay alive. Also felt a little bit like assembly line health care, but I guess it has to when you're dealing with that many people. Anyway, saw about 6 docs over the course of the day--medical oncologists, gynecologic oncologists, and liver surgeons. They all concurred with my current treatment plan, so nothing really new came out of it.
I am so tired of thinking, breathing, living every moment of my life with cancer at the forefront.
Every day when I wake up there is this slight moment when I think it was all a dream.
Thank God it's not real. Then the moment passes and it all becomes real again. I feel a cold breeze on my bare head and neck and go "oh yeah, shit....I don't have any hair".
A lot has happened since I last posted; in a nutshell:
2 chemo cycles down, 1 more to go before another scan to see if this agony is even doing any good.
Somewhere in there, I went to the Mayo Clinic for a second opinion. Ironic that I live fairly close to the best health care in America.
I was impressed with the magnitude of the place and the knowledge there; but it was also a little depressing--seeing so many people there just trying to stay alive. Also felt a little bit like assembly line health care, but I guess it has to when you're dealing with that many people. Anyway, saw about 6 docs over the course of the day--medical oncologists, gynecologic oncologists, and liver surgeons. They all concurred with my current treatment plan, so nothing really new came out of it.
It did confirm the diagnosis, which is that I will
likely never be cancer free again and even if I am, it will most likely be
temporary.
Liver surgery not an option until they kill the
cancer source, and pelvis exenteration surgery is not an option unless you want to live
with stomas for the rest of your life. There is also a very high risk of life
threatening complications with that surgery, so not the greatest option, eh?
It's hard to nail any docs down on how long I have to
live, but what I am surmising is that it's between one (average) and five (top
end) years. Hard to believe when I don't even really feel sick--at least not until I voluntarily sit in the chemo chair for 3 days. Only then do I feel like crap for about a week.
My daughter keeps saying they'll find a cure.
I'm glad I raised an optimist. I do try to stay positive, but also can't ignore it. I was always proud of being a "realist". But you gotta have hope. Without hope life is shit. Right now my foremost emotion is anger. Why is this happening to me? Why wasn't it caught sooner? Why can we not just fix this so I can get back to my pre-cancer life. In retrospect, it was a pretty damn good one.
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