Tuesday, April 23, 2013

The Hospital Drive

Every time I make that drive to and from the hospital after another cancer catastrophe I tell myself I should write it down, I should write that experience down so that I never forget it. What a stupid thing to think, like I could EVER forget that... every time it's the same. The ride out is full of anxiety wondering what I'm going to find when I walk in those ER doors, my mind is busy on the ride out mentally scanning a million medical terms, diagnoses, medications, imaging reports... possibilities upon possibilities of what is probably going on, what questions I need answered from the docs, etc. It's case study time, it's get down to business time and while there is worry and concern floating somewhere in my brain it's suppressed. No time for that kind of thing on the drive out.

It's quiet. I don't have the stereo on. Depending on the time of day I am agitated at the other people on the road (part of the anxiety) because I'm in a hurry to get there. The drive out is fast and I come flying in the ER doors, past the security and into the room like a tornado. I check on my Dad, give him a squeeze to let him know I'm there and then it's time to work. I flag down nurses, I ask millions of questions, I request the doctor to come in as soon as possible. I have them pull reports from the computer, I check vitals, I examine my Dad, I check his bags, pulses, comfort... he is my patient for that time.

And the rest of the day consists of that. I have grown to have zero patience for the doctors and nurses that have not shown up for the day to WORK. I don't give them that option. Things are on point when I'm there, everyone is held acutely responsible for what they're doing and if they aren't up for the task they're asked to leave in no uncertain terms.

The drive home....... the drive home is..... something that would be hard to witness, which is why it's a good thing that I'm alone every time.

It starts with the walk out of those hospital doors. Just yesterday I walked out the doors to heavy snow falling at the end of April. (I had just posted about how my birthday this year was much better than the previous year where my Dad was currently admitted to the hospital and we were told that his cancer was back, now stage 4. Well I spoke too soon I suppose, this year went well until 48 hours after my birthday... a frantic phone call at 4am... an ambulance ride.... and we're back at it again).

The snow was falling and I stopped and stared at the sky and thought, "I've made this walk with every type of weather and season.... sunshine, rain, wind, cold, and now snow...."

After the walk I get to my car and by this point my brain is off, autopilot takes over. Depending on the days events I usually end up re-capping what the heck has transpired over the past several hours and what that means going forward. Lots of anxiety, unknowns, concern and worry. This perpetuates the knots that have been twisting and turning in my stomach since I arrived.

At some point a trigger goes off, like the dam gives way, and the tears start to fall while I shake my head in disbelief. There are a million racing thoughts....

WHY.... WHY.... why....?

Is this ever going to end, will we ever be able to finally take a deep breath?

It's not fair. NOT FAIR!!!!!


I just cry... and struggle to breathe.... I hit the steering wheel so hard that one of these times I'll surely break my hand. I scream and I cry and continue to shake my head in disbelief. I think of all the times I've made this drive, I think of all the times I've walked through those ER doors, I think of the day we found out that he had cancer.

I hyperventilate.

I sob.

I crank up the radio as loud as it goes.

I zone out the world and I see myself as if I'm watching a movie.

A zillion disoriented thoughts pop in and out of my head bouncing around like a pinball machine.

My kids, my husband, neglect, short temper, work, bills, moving, help, this sucks, my poor Dad.

I wonder if my step mom is having a similar experience in her car in front of me.

I'm tired, I hate this, why the hell was that doctor such an idiot, I wonder if they checked this lab report, at least he has a fridge in his room that's nice, how will he be tomorrow. What if he has a seizure tonight.

The drive home is slow. It drags on in a surreal time warp. In reality those short 20 minutes feel like hours.

I remember things, I remember chemo appointments and conversations we've had, I think back to the day we found out about this nightmare and how the surgeon still had his blue cap on, I remember the drawings the urologist made for us at the last appointment, I remember the day I fell to my knees on the porch with the latest news, I remember previous early morning phone calls from my stepmom and subsequent trips to the hospital.

I wonder how we got here. Again, why. I imagine what a phone call would be like if he didn't make it through the night... what would they say, how would I react, how would I tell my kids. This is not something I should have to be dealing with right now.

What the fuck?!! How can we continue living like this all the time. This is just ridiculous and exhausting. No one can understand this, if someone were watching me right now they'd think I was insane.

I picture my Dad's smile and I laugh about a memory. I think back to some of my treasured times with him and I see my life playing like a movie, memories of everything from swimming as a young girl to learning how to drive to watching him play with his grandkids. A whole life of memories....

I smile and laugh and I belt out a song on the radio, I put my head back against the seat and continue to watch myself from up above and think of how nice it would be if this were all a dream that I could wake up from some day. I think about what life will be like when the cancer is gone, gosh that will be a nice feeling.... but it could always come back and how would that conversation go.... I don't know that I could ever take hearing that news again.

I sigh at the idea that this constant state of limbo and uneasiness is something we will have to deal with forever.

More disbelief. And laughter turns back to tears. I think of how this must be from my Dad's perspective, I can't even imagine... ugh... And then rage, this is bullshit... I just want to scream and hit anyone and everyone I can get my hands on.


I feel like an alien with 10 different heads and emotions and thoughts all going on simultaneously. This must be what it's like to be schizophrenic with multiple personality disorder. Everything is completely disjointed, manic highs and depressive lows, laughter and tears and rage... All in a 20 minute drive.

This is just insane. I'm SO sick of having these drives!! I'm up, I'm down, I smiling and then flipping out and then angry and then sad. I'm singing and dancing and then I'm punching the steering wheel and screaming.

By this point I usually interrupt myself from going insane because I'm at the final few streets from my house. Suck it up and stop crying. Get yourself together. I surely never walk into the house like this! I turn the switch off and breathe.

This stupid mascara, why did I buy this kind it is all over my face ugh! Blink blink blink, get your eyes dry. I fan my face and take deep breaths. I give my cheeks a few slaps and grab some chapstick.

Making the last few turns into the neighborhood. Keep it together... I shun any thoughts that will bring the tears back.

I put the car in park and take one final look in the mirror. Alright, inside we go... it's still snowing...

I'm tired. Back to the real world.
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Tuesday, April 16, 2013

Another Year, Another Candle On The Cake

Well I happened to look back at my post from my birthday last year and my first thought was that was only a year ago?? It seems like 10... it's probably aged me 10 at the least. I'm happy to say that my Dad is here to celebrate another year with me, something I did not believe I was going to be able to say. This past year has been full of ups and downs and a state of limbo, not unlike the past few years really but yet so different at the same time. I think we've found a new 'normal' with everything and seem to have adjusted to this life with cancer... if there is such a thing as adjusting. I'm not sure many people get the chance to do this because usually cancer shows up and it's a whirlwind and then the person is gone, like a tornado that just rips the earth right from under your feet. In our case it's more like a housefire, a slow burn.... It's like an extended version of a cancer tornado with the possibility that the fire may go out, you just never know. (If that makes any coherent sense to anyone that hasn't dealt with this???)

So we've found a way to 'adjust' to life with cancer. What does that mean?

Well basically it's a constant life of good and then bad and then good and then bad.... It's weeks where things are quiet with nothing to report and then weeks of chaos, emergency admits, doctors to argue with, a stubborn patient to argue with, and stress. Lots of stress. On average it's at least a lot of appointments and things to keep track of, surveying the situation on a constant basis and an unending nagging in the back of your brain. The time I spend with my Dad is also a mix, sometimes I feel like the "old" Dad is back, we talk like we used to, we have coherent conversations, he remembers things, he smiles and jokes, he has energy, he calls ME to see how I'm doing ..... and then there are other times where the lights are on but no one is home, he's tired, conversation is forced and awkward or we're fighting over his stubbornness to heed my advice.

That's what an extended life with cancer is.

I've come to a place of acceptance with the situation, not acceptance that this is happening because I will NEVER accept that nor understand why but an acceptance that this is our life so we need to roll with it. There's a bit less panic (depending on the week) and a bit more calm about it all for lack of a better word.

I have stopped clinging to things so tightly, like the idea of moving which we had intended to do last year before we found out about the latest diagnosis and we put an abrupt hold on shortly after. I would never in a million years have conceded to the idea of moving farther away from my Dad (even 30 minutes) this time last year. With all of the uncertainty I wanted to be as close as possible to soak in every last thing that I could, if it was the last.

It's not that I don't still want this, I do, but I've decided that putting my life on hold for the sake of cancer and the havoc it's caused is making me even MORE powerless against it all. The truth of the matter is that life is going to unfold the way it is supposed to, I don't have a cure for cancer so I certainly have no control over what is going to happen with my Dad.... I can kick and scream and fight and hold on for dear life but it isn't going to change anything. In the short term it makes me feel better to at least know that I am here for support, all caught up in the middle of this ball of yarn, and that probably won't change but in the long term I am letting cancer take over even more aspects of my life by doing this and not letting go....

So this year, we will move.

It's things like this that are a part of adjusting to the new normal. And I can't say if this is how I'd feel if we didn't have great feedback on my Dad's prognosis, if things were progressing I'm pretty sure I'd still be clinging. For dear life. But since things are stable for now I feel like I can let go a little bit. My Dad's cancer is just that, stable, at the moment. Essentially for the past 9 months of scans there has been no cancer progression. The original mass is gone and there are no soft tissue indicators of cancer at all. The bone lesions are all still present but have not spread or grown or gotten any worse. The thing about bones is that they take a long time to heal so these spots will show up on the scans even AFTER the cancer is completely gone until the bone has regenerated. This process can take a long time so it is possible that the cancer is gone and the lesions haven't healed yet, or it's possible that the cancer is still there, only time will tell. What we do know is that whatever treatment we're doing right now is helping, it's doing it's job.... so we hang around in limbo as usual. The main problem at the moment is dealing with complications from the cancer and chemo, dealing with the nephrostomy tubes, ureteral fistulas, and constant infections...

And that is how the past year has gone. We continue to be cautiously optimistic but mostly we've all been learning to continue to live while dealing with this instead of wallowing in stagnation. We've had a lot to celebrate, a lot of good things that have helped us keep perspective I think. Family weddings, my graduation, vacations, new houses, a lot of firsts, and 2 little dudes to provide laughter and distraction.

Overall year 26 was an experience- both good and bad, lessons learned, struggles endured in all ways. My mental capacity was stretched to the absolute maximum and through it all I've learned a lot about life and myself. It has given me some much needed perspective on so many things from friendships, to unconditional love, to marriage, to perseverance, to my own strength. I'd be lying if I said I wouldn't give all of that back to crawl back under the safety of normal life before all of this but at least I know I survived it.... and so the mission for year 27 is to continue to move forward, eyes ahead not back.

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