Sweet Dreams

So it seems I have this love/hate relationship with my bed lately.  I'm often dead tired by the end of the day, and sleep seems like a blessed escape, but the minute I crawl into bed and get ready to sleep some switch flips in my brain and I'm mentally wide awake.  There are few things in life more frustrating than not being able to get to sleep even when you're tired.  Laying there watching the minutes tick by on the alarm clock, all I can think about is how tired I'm going to be the next day if I don't get some damn sleep soon. And of course, there are lots of thoughts that creep to the surface in the wee hours that I normally thump down in the light of day. So I've started dreading going to bed.

The preceding sentences have been nothing short of a justification for abusing my new nighttime drug combo of choice:  Advil PM and Lorazepam. 
I admit that because I think it's contributing to the wealth of dreams that finally come when I now fall asleep--deep and drugged.  They are always pleasant dreams.  Maybe this is a blessing sent to cancer patients everywhere....your life is chaos, you feel like crap, but your nights will be full of laughter and flouncing around on rolling green hills in the sunshine.
My daughter is there--smiling and laughing and looking like she is about seven or eight again.  No teenage moodiness, no arguments.  My husband is there--helpful and happy and looking like we're on the best vacation ever.  My job is there, but there is meaning and purpose to having a career again.

Life is good in my dreams.  I feel light and carefree; cancer doesn't cloud the horizon at all.  When I wake up, that feeling stays for just a fleeting minute before being replaced by my reality.

Here we go again

This week brought with it a visit to a new gynecologic cancer clinic --this time at the U of M.  After my last, somewhat confrontational appt with my own oncologist, she encouraged me to get a second opinion at the Mayo or at the U to "satisfy myself and/or my family that there aren't options we're not pursuing".  I didn't bother to remind her that I had already been to the Mayo....shouldn't she know this?
So I forced myself to march into yet another medical setting and start over with my story
(in 3 minutes or less) with a medical resident who would in turn relate it to the doctor (in 2 minutes or less), only to have both of them return to the room and basically ask me why I was there.  What questions did I have for them? Uh, gee--well, can you do SOMETHING to save my life?  What about pelvic exenteration?  No?  Well ok then, how about just removing the damn "source area"?  If you can remove a cervix, why not the vaginal cuff?  No?  Well, ok then, how about more precise radiation?  No?  Can you do some kind of dance to the warrior gods that will make this little problem I have go away?  No? Ok, well how about you just kick me in the teeth and tell me to go home and die? OK, sure.  On my way out, the good doc looked at me with this overwhelming look of PITY and told me to have a good day.  None for me, thanks.
In all fairness, he seemed like a nice enough guy....actually answered all my questions in English as opposed to medi-speak. Explained how the body "remembers" radiation, so it's not like starting over, it's cumulative--and the pelvic tissue can only take so much before the damage itself becomes life threatening to other organs. Explained that there was reason for optimism re: length of life in that I had a relatively long period of time before recurrence. Explained how no oncologist would recommend surgery that wasn't going to HEAL the patient. And I am beyond healing. Maybe if I hear it enough times, from enough different doctors, it will eventually sink in.

It made me wonder if they often have to deal with desperate people, such as myself...not really ready to die, not really able to grasp or accept the facts because I feel perfectly healthy, excepting some chemo side effects occasionally kicking my ass.
Speaking of which, my upper lip has decided to randomly swell up to the size of a basketball.  Interesting the weird impact of chemo drugs on the body's immune system.  I very closely resemble Daffy Duck. We've named it The Duck Bill. Funny, although it's hard to breathe with your upper lip blocking your nostrils. Nothing more steroids can't resolve... but I digress.

I feel somewhat helpless. I want to find people in my same situation, but I don't know where to find them.  I wonder if there are others in this same state of limbo, trying to figure out how to deal with the terminal diagnosis while still living a "normal" life.

I also feel strangely vulnerable, which I hate. I want to go back to being strong and independent, not sucked into this medical vortex of insecurity that I never wanted to be a part of.  Fucking cancer.

SOS

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.

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?

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.

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!

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.

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.

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.

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.

This just keeps getting better and better

CT scan at the liver surgeon appt showed additional spots and "areas of concern" on the liver.
He consults with my oncologist and comes in to say surgery is not the best option.  Rather they'd prefer to proceed directly to "systemic" chemotherapy, so it can address ALL areas of cancer, even the ones we may not know about yet. 
Eerily quiet in the room.  This guy that I had high hopes for saving me has summarily dismissed me after talking to me and my husband for all of 4 minutes.  Done, gone.
Huge disappointment and I have trouble holding it together long enough to get out of there.

2 days later the oncologists office finally calls to say what chemo regime they're recommending.  Also having a port put in; chemo starting on Monday.  Waited until Friday for scheduling to call me back only to say that my insurance company hadn't pre-approved it yet, so it would need to be pushed to either Wed or the following Monday.  I feel like we're losing valuable time.  It's almost two months now since cellular activity was first seen on the PET scan. Frustrating doesn't begin to describe it.  Wondering if I should get a second opinion, but I don't have the energy.

Friday after the port surgery, I get around to telling most of my family and friends about the situation.
OK, so I guess I did learn something last time around :)  The communication plan is in full swing.
It feels good to not have to hide it anymore. Not that I'm so noble about it; just had to get it over with before my hair starts falling out...

Saturday after the port surgery, my chest and neck are so sore that I decide to take a couple of the pain pills my husband had leftover after surgery for bladder stones.  Suffice to say that I was out for the entire day....came around about dinner time, really pissed at myself for wasting half my weekend. Enough of this wallowing around.  I'm ready to move on with living.

Not the best news

I've been avoiding this for awhile now...its as difficult to write about as it is to talk about.
Gradually over the past week or so, the truth of the situation has slowly sifted through me.
Call me dense.  It's taken awhile. Apparently it's not like in the movies when the doc says "sorry ma'am, but you only have xxx months to live."  I had to read between the lines, make some inferences based on experience, and then do a little research on my own. 
Some phrases I remember:
"We don't have a crystal ball".
"We're going to treat it very aggressively, because of your age"  (which made me wonder....does that mean they DON'T treat older people aggresively?)
"You might want to make sure you have a will; take care of your children"
"Cancerous cells in the liver indicate that they're in the bloodstream, which means a new level of pervasiveness"
"Gradually, the chemo stops working"

I started this blog in an effort to inspire other women facing vaginal cancer.  I'm sorry if I'm not being very inspirational right now. This blog may take a new turn....
Basically right now I am just pissed.  Trying to stay positive, but I really have no idea what to do or how to deal with this.  Everytime I think about all the details I wanted to see watching my daughter grow up, all the life events that will happen without me, I am overwhelmed with sadness and panic. 

Seeing a liver surgeon on Monday. Wish me luck.