Not a hero

I’ll be honest, I’m not in this to be a rockstar.  I had no intention of being the bigger badass cancer patient.  I’m not on a mission to get my drains pulled before anyone else or push myself to stop taking the pain killers as soon as possible.  I hear time and time again, “you are amazing,” or “I can’t believe how well you are doing.”  Prior to the surgery I had friends express they didn’t know what to expect when they called or came to visit.  Even on the day of the surgery the plastic surgeon came in to talk to me about his part of the procedure.  He explained everything and asked if I had questions.  My response was, “no, I think I’m good.”  He looked at me stymied and said I was the calmest patient he’d ever seen.  I should mention that at that point Derek and Oleg were still in the waiting area and I was in pre-op alone.  They had also not given me the versed at that point.

The point being is, aside from the day of the needle core biopsy and a few breakdowns here and there, I have remained remarkably calm throughout all of this.

It is distinctly possible that I am calm because of anti-anxiety medication.  I could be calm because in extreme stress situations I am the one who will calmly get all of the people out of the burning building, call 911 and extinguish said fire without breaking a sweat.  (That last one actually happened.). It could also be that my denial about all of this runs so deep that I am just being a mindless automaton about all of it.  Whatever it is, it most certainly is not me setting out to be a rockstar.

Just to show that I’m not trying to be a hero, here’s the scoop on what I’m dealing with and how I’m handling it.

The drains.  Oh my God the drains!  I hate these fuckers (there is no pardon to that language).  There is one in each side.  If you’re not familiar with JP drains let me paint a picture.  They cut a small hole in each side by my ribs.  Into that hole they stick a tube that’s about 1/2 the diameter of a pencil (maybe a little smaller).  The inside the body part of the tube wraps around in the surgical site and is held in place by 2 stitches in the skin and then the suture is wrapped around the tube.  The other end of the tube is attached to the drain bulb.  The bulb uses gentle suction to suck out fluid that builds up in the body.  The fluid starts reddish then turns to orange then yellow as time goes by.  The drains don’t hurt per-se, but they are not comfortable.  The sutures are itchy.  I can feel the tube under my skin.  They have to be emptied 2-3 times a day and you have to “strip” the tubes.”  This requires holding the tube with one hand and pulling the fluid down to the bulb with the other.  This creates a more active suction which hurts like a sonofabitch.  This is Derek’s main job.  He’s wonderful and does it without complaint.  However, it is difficult sometimes to remember that the bulb is attached to a tube which is inserted into someone’s side and held in place by stitches into the skin.  The drains remain in place for 1-3 weeks.  I can call to have them taken out once the output of fluid is less than 30ml for 2 consecutive 24 hour periods.  I will reach that mark on the left side today.  I am going to beg and plead the nurses to pull the right as well.  It is at 31 and 24.

I should also mention that the drains are the #1 reason I have to sleep sitting up and on my back.  I cannot lay on my side at all.  I will pinch the tube if I do.  I also have to attach the drains to a lanyard to shower.  I wear a post-surgical camisole with pockets in it to hold the bulbs.  The arm hole of the camisole rubs on the area where the node biopsy site is.

The Pills.  Oh my lord so many pills.  Derek asked me the other day if I was tired of taking so many pills.  Christ yes!  In the AM I take 1 Effexor, 1 Zyrtec, 1 antibiotic, stool softener (although I think I can stop this now).  Mid-day I get a probiotic.  In the evening I get another antibiotic.  Then there’s the pain managment.  My pain management pill of choice is Vicodin.  It is the only one I can take that doesn’t make me horribly sick.  When I first came home it was 1 every 3 hours.  I whittled that down to 1 every 6 hours and yesterday I stopped taking that one all together.  Now I take extra strength Tylenol ever 6 hours on the dot.  I also take a muscle relaxer every 6 hours.  That one I’m not willing to give up yet.  It doesn’t make me overly tired or nauseous and it helps with shoulder and arm pain.

The Pain.  I have an unusually high pain tolerance.  Remember, I lived with extreme periods my entire life.  My 7-8 on the pain scale would be a normal person’s 15.  I’m not sure if I’ve ever hit a 10 on my pain scale.  I don’t think I’d ever want to.  To me there’s a difference between pain and discomfort.  In the hospital I couldn’t take a deep breath.  If I did I was in pain.  Now I can and it is merely uncomfortable.  Despite taking the Vicodin and muscle relaxers I sill had what I would call discomfort.  Others would call it pain.  Most of the time I have discomfort.  Ocassionally I will have twinges of pain.  That pain is pain and it is a pain.

Limited Arm Movement.  According to doctor’s orders I’m not supposed to lift my arms above my head, push or pull anything.  This means I’m not supposed to open drawers or doors or reach for anything.  I’m short.  Not reaching is difficult.  I do have long arms so I can reach the top of my head with my elbows at my side.  I also stand on my tip-toes frequently.  I have mastered using hand and forearm muscles to open things.  We have a pocket door to our bathroom.  I can use my whole body to shut it then pry it open with my fingers until I can get a foot in the opening to push it open with my leg.  I have a stool by the bed that I use for leverage to scooch myself into bed.  I use the BBQ tongs to reach things on shelves.  I’ve gotten creative.  However, there are times when I can’t be creative and am useless.  Reaching across my body is nearly impossible.  So is reaching behind me.  This is inconvenient when on the toilet where the roll is behind me.  There is nowhere good to put the paper in that bathroom.  I would have used a different bathroom, but they were all occupied.  I only have so many choices.

My complaints are small and silly compared to some of the difficulties other women have faced.  I am thankful that all of this hasn’t been the worst thing in the world.  

Now if you’ll pardon me… I’m going to go attempt an upright nap.

2 Comment

  1. Mom says: Reply

    Whittling through each day, that’s all you can do. It’s a bitch, but you’re handling her and that my love, is amazing. You will scratch and claw till you make it to the other side of cancer. It is not optional to quit. You aren’t going anywhere but to the future with the rest of us. This is where we bitch about the ridiculous orange man and dream our dreams of the future. Keep your chin up honey and if you can’t, we’ll hold it up for you. Love you!

  2. Jessica says: Reply

    I am sure you will help so many people with your testimony. You are missed in the school.
    Tons of love for you.

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