Dry and cracked

It occurred to me that this is an apt portrayal of my existence right now.  The landscape is pretty barren; everything is dry around me.  But I'm still here and still green--thanks to sunshine that keeps peeking through and the occasional refreshing shower. I'm thankful every day for my blessings--every ray and every drop.  

Life Goes On

Do I have any readers left? Thought I'd better post an update before I forgot my password.  My apologies for disappearing for months at a time...seems like just yesterday I was sitting at this computer attempting to explain the upheaval of being in a dual-cancer home.

So much has happened; don't really know where to start.  I'll revert to my business mode of bullet points for the sake of brevity.

• Mid October thru mid November I spent in-patient at the NIH (National Institutes of Health), the first participant in a new immunotherapy clinical trial--a protocol for a specific genetic mutation from HPV related cancers.  I fully intended to document the process here, because it's really quite fascinating and because I really believe that immunotherapy is the future of cancer treatment. But the reality of the experience was that I felt so crappy for so long that I couldn't even stand to look at a computer screen, let alone try to relay the experience in a positive light.  Suffice to say that when I finally returned home and recovered, I literally felt like I had died and come back to life. That being said, the tough road is one I would gladly travel down again because it gave me HOPE!  And although subsequent scans have determined that the wonderous new T cells within me weren't quite enough to cure me and won't save me from the fate of this disease, I have no regrets.  I feel better than I have in a long time and because of that (my) cancer is not always front and center in my consciousness.
• My nephew and his wife lost their precious little boy during the holidays.  Cancer robs another family of their loving circle; hopes and dreams die an agonizing death when a child dies. The grief that these young parents are dealing with is heartbreaking, and has rocked my faith in the grace of a heavenly entity.
• Days, weeks and months have gone by and I stand as a bystander watching my husband go from a robust male to a shadow of what he used to be.  It's painful to watch and as much as I try to be an advocate, it's frustratingly fruitless.  I have come to realize I still love him very much; I'm scared of what life will be like without him, and I wish that we had done more to be the perfect mates to each other earlier in our many years together.

Each of these deserve much more attention, and I have so much more narrative circling in my head on all of these topics.  Yet each of them is so painful that its like slowly ripping off a bandaid to write about them.  So I'll avoid that for now, and wish you all peace and beauty in your world.

The Unthinkable

Since most of the readers of this relatively lame cancer blog are strangers to me, you'd have no reason to know that I married someone who is 12 years older than I am.  We also waited for about 10 years to have a baby together, so I was 34 and he 46 when the whirlwind we call the girly arrived.
She continues to be the light of our lives; the glue that has held us together for at least all of her 16 years.  She is bright and funny, beautiful and caring. And for years, I proclaimed the wisdom of waiting until you're old enough to afford and appreciate them before you bring children into the world.  And because my husband was older, and oh--just happened to have a long family history of lung cancer--I always assumed that in the end it would be her and I, alone against the world.

When my cancer moved from a passing concern to an ever present monster in the room, she clung to the thought that it would be her and her dad--somehow managing to live without me doing everything for them (guilty--aren't all moms, at least of my generation?).

She is now living the nightmare of knowing that not just her momma, but both of her parents are  dealing with a terminal cancer diagnosis. 

You see, the prostate cancer was the least of our worries.  The recurrent anemia and overwhelming fatigue was finally nailed down as being related to a mass in his small intestine that, upon removal and biopsy, was determined to be metastatic lung cancer. A matching mass in the lower lobe of the lung and just for kicks, a coordinating spot already living and growing on the hip bone.

So over the past few weeks, this picture has gone from hazy and grainy to brilliantly clear.
Absolutely crystal fucking clear.  If you know anything about cancer, you know that this level of metastasis rules out surgery, rules out radiation.  Do no pass go, do not collect $100.  Go directly to a chemo chair.  A fate I wouldn't wish on my worst enemy, let alone on my best friend and the salvation that was to be the keeper of my girly when I throw in the towel. Stage 4 lung cancer is not curable, especially if you don't have one of the two gene mutations that can be quickly arrested with an effective new drug, and especially if the "titch" of cancer has already meandered through your bloodstream and taken up residence in far flung locations.

I can't even find the words to explain the devastation.  It's not the knowledge that he will have a tough, ugly fight that in the end most likely won't end like we want it to, nor is it the knowledge that I will either be right before him or right after him.  We're grown adults; we've had a terrific life.  But the heart wrenching knowledge that we're leaving our beautiful girly behind in this world at such a (potentially) young and tender age is so painful that the moment it enters the brain, you push it back down under the surface quickly lest it make you nuts.

I feel like I've won the lottery.  Some rotten lottery no one really wants to win.  Congratulations--your family is the grand prize winner in the Cancer Lottery!  Deal with it!  Tell all your friends!  Get ready for the looks of pity (BOTH of them!), the rude comments (OMG, what is in the water there?), the condescending opinions (Hmm, former smokers, aren't you?) Tired of all that already, so we hide out.  We tell only those people who absolutely need to know.  We continue to live our lives like we always have, ignoring the monster when we can.  For now we can get by with it.  But we know that so many choices, so many decisions, so many actions we really don't want to take, are looming.  Will need to be dealt with.  Sooner or later.

Live like you are dying?

I've been saving this rant er, blog topic in my head for some time now.  Certainly not a new song/phrase, but I really hate it.  What the hell does that mean anyway?  How would you live differently if you knew you were dying? 

• Quit your job?  Not if you need the health insurance.
• Travel the world?  Not if it's completely unaffordable, and not if you have a family to take care of.
• Create a meaningful bucket list and cross things off, one by one?  Not if you really don't have time in between going to work, going to treatment, scans and other medical appointments, hauling kids to activities, and/or supporting those you love in other ways.  In the real world, there is no time for bucket lists.
• Appreciate those around you more than you ever thought possible?  Savor every moment with loved ones?  Yes, yes indeed you can do that.  Even when it's difficult because you feel like shit and even when people let you down?  Yes, you need to do that.

The vague, lofty idea of living differently because you're dying annoys me.  It assumes that those of us who are aware that death is the inevitable end of our somewhat crappy journey have some kind of super human insight into what makes life meaningful and how to do it better than everyone around us.

The reality of living with a terminal disease is that many times when you're doing something fun and/or something out of the ordinary, you wonder if this is the last time you'll ever do it, the last time you'll ever be there, the last time you'll ever see these people, etc. So even when you're living in the moment, your mind is dragging you into the future. The hazy, unknown future.

The reality of living with a terminal disease is that you spend time pondering all the things the future will bring that you know you will most likely miss out on.  Life fulfilling moments and experiences that you won't share with your kids.  Senior proms, moving into the dorms, wedding dress shopping, new grandbabies.  All of these haunt me and make my heart hurt for my daughter because her mom won't be by her side.

This Labor Day weekend has for about seven years now meant a party at our house--including friends, family, food, cocktails, music and fun.  It's not happening this year because I didn't have the energy.  I'm not living like I'm dying.  I'm missing the people I would have seen and the fun I would have had and I'm angry that cancer has taken that away from me. 

Change in attitude

Since my last post was a real downer, I wanted to share some more upbeat thoughts on this lovely summer day.
Shortly after I whined about feeling alone, my extended family (my wonderful sisters, beautiful nieces, favorite nephew and family, my mom and dad, etc) surprised me by showing up at my door on a holiday weekend--snacks, beverages and lunch in hand. I was so happy to see them all, I quickly forgave them for the lack of warning (they knew I would cook and clean had I known they were coming). Many of them drove 4+ hours one way and back that day; what a gift.

I've made a conscious decision to stop comparing my story to other cancer stories on the distorted world of the internet.  Duh.  What was I thinking?

Many other good things going on around me as well:

• My little great nephew (son of #1 nephew above) came out of chemo for medulloblastoma with a clear scan, after an initial terrifying read.  So happy for them! What a horrible road for a young family.
• My teenager is now legal to drive, and has hit the road. Scary, but less hauling her around for me.  And I'm so grateful for every milestone I get to participate in.  
• The hubby may finally be able to walk again soon, finally! after a long period of healing a broken leg. Looking forward to having him mobile again :)
• My latest scan came back with reduced SUV numbers/activity levels with no spread to other areas.  So even thought I felt like crap and was sure the cancer was all over in my back and stomach, turns out I'm not dying anytime soon.
• Bad news is that current chemo routine continues.  Suck.
• Summer has finally come to the midwest.  The skies are a beautiful shade of blue with a brilliant white fluffy contrast.  It's warm and wonderful after a ridiculously ugly winter. I'm grilling pork chops and eating watermelon and root beer floats. Life is good!

Cheers,
~D.

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?

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.