Shaken, not stirred

I don’t know if I’ll start bleeding again.  I hope I won’t, but past experience tells me I have a week, maybe two, before it starts up once more.

This is one of those things about cancer, and I think it is true whether the cancer is curable or incurable.  It turns your life into a quickly shaken snow globe, with you in the center of it, hanging on for dear life.  You can’t get your balance.  You can’t make sense of anything.  All the pieces of your life are out of place, flying around, impossible to put in order.

I am reminded of when I lost a significant amount of weight after being heavy all of my adult life.  Although I looked and felt good, I also felt out of balance.  People treated me differently, in subtle ways.  I viewed myself differently.  I noticed that some men took notice.  Clothes shopping, a previously pleasurable experience, left me anxious.  I didn’t know what would fit, which stores would work for my new body type.  Eventually, I became more familiar with my new self, and the anxiety settled down.  Subsequent weight fluctuations have been easier to manage, both up and down.

Now here I am with kidney cancer, in the middle of my snow globe of a life, and I’m finding that as my cancer experiences become more familiar, it is easier to deal with them.  They’re the pieces in the snow globe that have fallen back down, allowing me to examine them and understand them in my new reality.  The new normal.

And so, tonight, I’ll restart my medicines, going back down to my original (though inadvertent) quarter dose.  And I’ll continue to hope that I won’t start bleeding again, but if I do, at least now I will be able to approach it as a known quantity.  Still something unsettling, and not even close to the same level as finding clothing that fits, but something I know I can deal with.

But please, don’t make me deal with it again.

Colors and Money

After more than a month of no payments, I finally received a deposit onto my state disability debit card.  (I’ve taken to calling it my cancer card, as in, “Honey, let’s let the cancer card take care of dinner tonight.”)  One of the first things I did upon noticing this belated windfall was make an appointment at the local tattoo parlor for a small bracelet tattoo.

I’ve been wanting a tattoo on my hand/wrist for quite a while, but it’s never seemed like the right time.  Getting this tattoo is partly a result of my 80 year old self getting loaded off of tequila shots and screaming “Let’s Party!” at the top of her lungs.  (Figuratively, people, figuratively.)  But I’m off the pazopanib (which slows healing) for a while, and there’s money burning a hole in my pocket.

I haven’t always made the best financial decisions, but I’ve generally tried to do the right thing financially.  The responsible thing.  The 45 year old me thing.  Seven years ago we dug ourselves out of $100,000 of debt (from school, cars, a bit of credit card debt, and some of those not the best financial decisions), and we have tried to keep in the black since then.  We save for retirement.  We pay cash.  We’ve put off certain luxuries for later.  Always later.

But now that we’re faced with the prospect that later might be sooner, some of my feelings about money have changed.  And, again, the 45 and 80 year olds in me are duking it out.  Do we pull money out of the house to finance a trip to Iceland?  – Something that once seemed frivolous, but now seems more reasonably like a family bonding experience and adventure.  How do we balance saving for retirement and the kids’ college needs, which were going to be partly funded by having me go back to work full time, with paying for the things, the experiences, we want to share with our kids now.

As interesting, fun or exciting as they might be, I still see these possible experiences in the same light as presents showered upon a child by their absentee parent after a divorce.  Something to assuage the parent’s guilt, but which never quite makes up for the loss the child feels.  A consolation prize.

And yet, what else can I give them but time with me now?

Not that a tattoo is time with me, or even something that my kids will find meaningful or at all related to them.  Because, of course, this for me, about me, only me.  My consolation prize for having to deal with cancer, the annoying side effects that require I stop my meds, and having to change my entire view of what the rest of my life will be.

And maybe it’s the prize I get for toiling through the emotional weeds, for reaching a bit of emotional solid ground, where I’ll be able to re-plan our life and our finances with all this new information.

Or maybe it’s just pretty and I wanted it.

Tattoo

In the beginning

So here’s how it all went down.

That Wednesday in late March, just two days after I’d freed myself from a job that felt more punishment than pleasure, I was looking forward to everything that was coming up. I didn’t have to sit at the desk I’d been chained to; the one which caused my back pains. The weather was gorgeous – sunny, but not hot. Perfect for the yard work I’d been planning in my head. I had a plan laid out for studying java programming, so that I could really *get* the object oriented bits. I’d put job hunting out of my head for the time being. I had a quilt or two to make.

And then I noticed that there was blood when I wiped after using the toilet that morning. “Damn, my period isn’t supposed to start until next week,” I thought, annoyed. Later, after a trip to the gym, I peed in the shower (yes, I’m one of those people), and noticed that there were chunks of blood. A nagging thought came to me that that wasn’t period blood.

By the late afternoon, I was experiencing a fair amount of pain, but thinking it was probably just a urinary tract infection, I’d reached out to my doctor who prescribed antibiotics over the phone. The trip to pick them up was difficult, but I comforted myself with the reminder that once the antibiotics kicked in, it would all feel better quickly.

Except it didn’t start to feel better, and instead grew increasingly worse. That night I had the strongest need to urinate, but couldn’t get anything to pass. Finally, as I stood, screaming, in my bathroom near the toilet, the dam broke and what erupted was nothing less than a scene from a horror movie. My bathroom floor was covered with blood and clots as large as an egg. The walls were splattered with blood. I sat down on the toilet and cried with relief, with pain, with terror.

Reil immediately made the decision that, yes, indeed, this warranted the trip to the emergency room we’d been contemplating. By the time we got there, I was once again in pain from the need to urinate. Luckily, the folks there got me situated in a room and started a catheter, which produced a fair amount of relief. A few hours later I was sent home with an appointment with ultrasound the next morning and the promise of a urology appointment later.

We got a few hours of sleep. I emptied my catheter bag. We dropped the kids at school and headed back to the hospital.

The ultrasound technician was friendly, and I was so wiped out that I didn’t notice when she began acting a little squirrely. Reil, on the other hand, did, and began making calls to the urology department to try to get a time for me to come in. Eventually we headed back to the ER to get them to send the order to urology, and minutes later, the ultrasound tech met us there, and spoke to the doctor.

A CT scan was ordered. I was pretty much out of it anyhow, so Reil ran home to pick the kids up from school. My catheter bag filled up and I couldn’t get anyone to empty it immediately- great pain until the nurse helped out.

Finally, the CT scan. And then a wheelchair trip across the road to the urology department, all the while my bladder feeling more and more full. Once there, it became apparent to me that the catheter had been knocked out of place, and that nothing was coming out of my bladder. Despite my pleas for help, they ushered me into an exam room, telling me that the doctor would come soon.

I stood there, waiting. Needing to pee. Have you ever tried holding your urine until it hurts? I was there, but I couldn’t let go. Everything was blocked. A young woman came in after about 20 minutes and I told her I needed help. Before she left, she told me the doctor would be there in a few minutes. Another 5 minutes. I called for help. I screamed. I finally opened the door and slammed it, which brought a couple of nurses running. I begged for their help, and they got me down on the table, removed the catheter, and oh! the relief.

I laid on the table and cried and cried and cried.

And so, it was almost anti-climactic when Reil and the urologist showed up, and the urologist turned to us and said “You have kidney cancer, and it has spread to your lungs.”

And in that moment, yesterday’s thoughts of enjoying freedom, planning my future, loving life, all slipped away.

Differing Selves

In therapy, I am learning that I am experiencing two different developmental stages right now, and that trying to balance the needs and responsibilities of one with the other is part of the unrest I feel.  On the one hand, I’m a 45 year old woman, a wife, a mother, someone who is used to working, supporting myself (with varying amounts of success.)  On the other hand, I’m like an 80 year old, coming to terms with end of life issues.  Both of these stages are valid and need to be honored, but at times, their needs require compromise.

One more place in my life where I have to attempt balance.  Dammit.

Part of me would like to give in to the 80 year old.  Just say “Fuck it,” put down my 45 year old responsibilities and do only what I want.  Give strangers on the sidewalk a piece of my mind?  Check.  Hire someone to take care of the house and meals?  Check.  Play pinochle and dominos with my friends?  Check.  Sort of.

And then I wake up and remember that I have two kids who need me, a husband who needs me, bills to be paid, college funds to be saved, a living room that needs vacuuming, and laundry to be folded.

It’s not that I don’t want to tend to these parts of my life (though I could easily do without the vacuuming and bill paying.)  A few months ago, all of this felt normal, exactly where I was supposed to be and what I was supposed to be doing.  And I felt content.  Sometimes things were a drudge (hello, pairing socks) but there wasn’t conflict.

And now?  Forget the whole cliche of battling cancer.  The real battle in me is between the 45 year old self and the 80 year old self.  The 80 year old leaves household chores undone, while the 45 year old feels guilty for the mess or angst about not setting a good example for the kids.  The 45 year old runs the kids to camp and takes care of some errands, leaving the 80 year old feeling neglected and wanting to spend the day painting.

Sometimes the 80 year old feels like a tantrumming toddler, and others, the 45 year old seems to be way too much of a nag.

And somewhere, inside myself, I have to find room for both of them.  Oh joy.

Letter to a friend

There is some freedom for me in knowing there isn’t a cure for what ails me. I may not know the way my cancer path will meander. I may not know how long my path my stretch, though I do know it will be shorter than I’d like. I do know where it will end – not with a cure, but with death.

I know that, to some, this may sound fatalistic, or that I’ve given up. But I haven’t. (Though I think I deserve the right to be fatalistic now and then.) I simply want to focus on living and making it the best life I can.

I feel I have a bit of freedom in that I don’t have to waste my time and energy hoping for a cure, for my salvation, as it were. I don’t have to go to battle to try to save my life, trying desperately to change the path I’m on, guessing which treatment might keep me from dying.

Instead, I get to make choices about how to live my days. I get to think about the things that are truly important to me. I have the chance to examine my life. I have the chance to examine my death. I have the chance to come to terms with a shortened life span, with death that will be sooner, rather than later.

I want to share all of this with you. I want you to be with me on my journey through cancer, as you’ve been with me through other journeys – painful, happy, joyful, scary.  I want you to understand my journey, so listen.  I want to understand your journey, so don’t be afraid to talk.

Please don’t be upset if I choose to find ways to accept my path rather than fight against it.  I want it to be as joyful as possible, and that requires, at least for me, a certain sense of peace.  I haven’t attained that peace yet, but that is my goal.

That,  and sharing good times and laughter and tears with you.

But first we’ll live

Reil and I have been “binge” watching Game of Thrones, and we just finished season 3.  Though everyone talks about the Red Wedding, what struck me most about the season was a line in the episode “The Bear and the Maiden Fair.”

“If we die, we’ll die.  But first we’ll live.”

But first we’ll live.

Ygritte tells this to Jon Snow, as they’re trying to come to terms with being loyal to one another and to differing factions.  She recognizes that theirs is a life that might be short.  They’ll die sooner or later, but first, together, they’ll live.

Lately I haven’t been focusing so much on living.  I’ve been trying to work through my feelings on death, dying, loss. My life expectancy has been cut drastically, and processing that takes a great amount of energy.  The issues of grief and grieving keep coming up in relation to different parts of my life – my family, my marriage, my children, my career, my hobbies and interests.

How do I reconcile what I thought I’d have with what I’m going to have?  Where are my priorities now?  Those things, whether they be goals, expectations, etc., that I’ve pushed off for later have to be addressed.

But first we’ll live.

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Although I want to start focusing on just living again, I know it might not be my primary focus for a while.  I have to honor the feelings I have now.  I have to work through them.  But I yearn for the time when I can just live again.  When I can have the emotional and mental energy to be participate in conversations that aren’t about cancer.  When I can plan things and follow through.  When I can look ahead to living, not dying (even though I know that’s in the forecast, too).  When I can just relax.  When I’m not focused on grief.

But first I’ll grieve.

It just got physical

Warning:  This post has a lot of TMI grossness in it.

So I’ve been cruising along, taking my medication every day (now at the prescribed 4 tablets daily), and I’ve been doing well physically.  Emotionally, it’s felt like I’ve had a sucker punch or five in my gut, but physically, I’ve been doing fine.

And then earlier this week, I started having blood in my urine.  Again.  Flashbacks to that night in March, when as far as I knew, I was a reasonably healthy woman with 30+ years of life left to live.  And then the blood and the pain and the blood all over the floor of my bathroom.  It looked like a crime scene in there.

So you’ll pardon me if I got more than just a little freaked out to be peeing blood.  I mean, I think I handled it pretty well.  I took Reil aside and told him calmly what was happening.  I shot an email off to my doctor (Kaiser has a great online system.  Props to them for that), and took Molly shopping for new sneakers.  Checked my email at DSW.  Dr. Shek said that it’s probably just a side effect from the meds – no doubt, that’s why I emailed him!  All of the websites I’d read said to contact your doctor if it happened.

Ok, Fine.  I told myself I’d try to relax, let things take their course.  But, damn, those flashbacks just kept rearing their ugly head.

Next day, still more blood.  (Guys, if you’re like my husband, you’ll want to cover your ears for this piece of overshare.)  Seriously, it felt like I was menstruating through my urethra.  I was, understatement, uncomfortable.  Pushed the issue with the doc, shelled out $50 to go in to see him face to face, and we (by which I mean he) came to the decision to pull me off of the drugs for a bit, maybe a week.  We’ll see whether the bleeding stops, and then probably start back up with two pills a day instead of four.

I’m happy to report that 48+ hours since my last dose of the meds, the bleeding has slowed down a bit.  Now let’s see if my flashbacks subside as well.