I had a wonderful day yesterday.  I helped a doc insert an arm port, the first ever in Edmonton.  The doc is an amazing man whom I love working with.  He is kind, dedicated and extremely knowledgeable, mostly though it is his kindness which shines through.  He helped a patient yesterday, a young woman who is dying of cancer;  he made her life a little better

I got news that there is an agency that is willing to take on Miss Katie as a client;  strangely enough it is the very agency I had hoped for.  The big guy and I meet with them next Monday and Katie could move in to a new home in five weeks.  Her behavior, or rather her mood has improved radically on the valproic acid.  She can pay attention longer, she's less anxious overall and she's enjoying life much more.  I am thankful. The new agency will care for Katie alone at first, implementing the behavioral strategies as advised by the behavioral consultant before moving a roommate in with Katie.

It's not just Katie whose behavior has improved, I am also working at changing my behavior around her.  The big guy pointed out to me that unless I am looking at Katie, I am in effect plugging my ears.  She signs and uses body language to communicate so you need to be looking at her to "hear" her.  Only took twenty-six years for me to learn that but I guess better late than never.  I have been working at paying much closer attention to her, looking at her, looking into her eyes and she's much better.  He's right.  Of course he's right, he's often right.  He pays attention to people.  He pays attention to Katie and he notices things I can miss.  I've also started singing to her more as suggested by the behavioral consultant.  Katie likes music but it's not really the music she likes, she likes to be sung to, she likes the interaction and if the song makes no sense, she likes that even better.  She understands humor, gets that it's the disconnect between what is expected and what is delivered that is funny.  And she has a beautiful laugh.

I'm also on holidays for the next ten days which is lovely so I'm sitting here, writing, thinking about taking the dog for a walk before it gets too hot.  Right now both animals are curled up on the chair beside me, fast asleep.

Time to fold laundry, walk the dog, paint a wall and some trim, maybe even work in the yard a little.  Happy Friday.

I haven't written in a long while.  Life has been busy with work and family but maybe that's an excuse.  I don't make the time to sit down and write. 

On the way home we stopped at the Abbotsford Tulip Festival and took photos.  It was beyond beautiful.  Naturally I burst into tears.  It amazes me how much beauty there is in this world, and how much ugliness at the same time.  I know the colors don't look real but I haven't touched them.

Katie broke her arm almost six weeks ago and had to have surgery.  She has done well, all things considered.  The bone is healing slowly but it's healing.  It doesn't seem to cause her much pain anymore.  The medical marijuana that we started her on shortly before she broke her arm is helping her anxiety.  She's more like her old self, smiling, relaxed, friendly.  Not afraid and defensive.  We still have kinks to work out but it's coming.  She also had to move in the middle of all this and is doing well in her new home.

And me.  I'm happy enough most days.  The days are shorter.  The leaves are ready to burst forth.  Work is better now, most days we are fully staffed which helps.  My patients still teach me something new everyday. 

I still forget to relax and enjoy my life. This need to work and work and work to makes things perfect when life can never be perfect; when life is supposed to be messy and enjoyable.  I try.  It's just hard for me to sit still and be.  The closest I come to being is when I'm walking which is something I guess.  A start. 

My granddaughter helps me to remember to be as well.  To play and enjoy life.  Note to self, spend more time with little people.

A patient came into today with his wife and son.  This patient had lymphoma and we have treated him for the past two years.  Today was his last treatment with us and the anniversary of his diagnosis.  His wife couldn't stop smiling. 

I'm thankful for that. 

It's been a difficult year.  We have worked for the majority of the year short staffed.  My boss believes that all we do is start IVs.  He knows we do a few other things but my main job is to start IVs and help radiologists insert central lines. 

Except that's not my main job.  My main job is to care for my patients.  That means I listen to my patients.  I look at them as they stand up and as they walk down the hallway.  I check to see if they're tired, if they're in pain, if they're better or worse than when last I saw them.  Is there a family member with them, when they always used to come by themselves?  Are they leaning on a cane?  Being pushed in a wheelchair?  Are they having pain?  Is their breathing okay?  Do they have a fever?  Do they need to lay down? 

I need to understand at least a little about their type of cancer and there are as many different kinds of cancer as there are different types of cells in the human body.  I need to know that breast cancer spreads to the bones and lungs and liver and brain.  I need to know that small cell lung cancer spreads to the brain.  I need to know that Burkitt lymphoma is the fastest growing human tumor.  I need to know that ovarian cancer can cause kidney problems.  I need to know that colon cancer spreads to the liver and that rectal cancer spreads to the lungs. 

Our patients come back to us over and over again.  We see them get better and we see them get worse.  They trust us.  They rely on us to answer their questions and to hold space for them.  So when a patient starts crying because her girlfriend and lover of twenty-five years was found dead of a heart attack and it was supposed to be my patient that died first, I sit and listen.  When a terrified six year old needs an IV started, I tell her a story about my own little girl, Miss Katie, who doesn't like needles either.  And when a patient tells me they won't be coming back because the doctor has told them this is the end I hug them and I cry. 

Biopsy patient's end up with chest tubes inserted because their lungs have deflated.  Transfer patients from out of town can be too sick to send back.  Patient's can have so much pain they can't move.  There are fevers and chests filled with fluid and obstructed bowels and leptomeningeal disease.  There is pain and fear and fatigue. 

And we don't just care for our patients, we care for their families as well.  Because often times it's harder to watch someone you love suffer than to suffer yourself. 

So when I hear my manager say they don't want to cancel any lines just because we're short staffed, it hurts because I know I will have less to give to my patients.  What I want, what I need is for someone to care about me so that I can care for my patients. 

This is how I feel so often;  a small boat, which is fine as long as the seas are calm but there are always storms.  There are many days when I struggle to just stay afloat.  I'm not depressed now but it always lurks there, in the background, ready to strike when I'm at my most vulnerable.

External stress, lack of control in particular, rocks my boat.  Work has been short staffed again.  Last Monday, my first line patient of the day was a woman two years older than me with metastatic colon cancer.  I asked her if her chemo had started and she said no, there was no more chemo.  She was here for MAID.  I had no idea what that was so I asked her.  It's an acronym for medical assistance in dying.  My eyes teared up and I started crying. 

Her body was riddled with cancer.  She was in constant pain and it was only going to get worse.  She opted to end her life when the time was right for her, not when the cancer had destroyed her.  I apologized to her for crying and we were able to talk.  She had terrible veins.  The doctor and she decided to put in a central line to ensure there were no problems on the day of her death. 

I fully support a person's right to choose their time of death and to be honest I think that when people are given back that control, it can allow them to live more fully until they do decide to die.  My patient died on Friday, with her friends and family beside her.  She was at peace with her decision and it was not an easy decision to make she told me.  She died at home, her husband beside her.  A good death.  It's what we all hope for.

When we don't have enough people at work it's difficult to spend time with the patients who need it but I refuse to rush some things.  It is a disservice to my patients but it takes it's toll on me.  This past week I decided to stop rushing.  Coworkers, techs, docs, managers, they'll all have to wait because the work I do is important and I'm not going to short change my patients.  They deserve better.

And this decision helped me to right my boat.  The water calmed itself.  The storm was self induced.  I just need to remember this.  I can calm myself.  I can slow down.  I can make a difference in the world one person at a time and that's important. 

This is one of my favorite photos of Miss Katie, taken before the anxiety and self abuse took hold of her.  She has no calluses on her wrists from banging her mouth and no permanent bruise on her forehead from banging her head against the walls or floors.  The big guy warns me not to turn my back on Katie and he's right but a part of me can't let go of this imagine of my beautiful, happy daughter.  I grieve for my lost daughter all over again.

This is Miss Katie out celebrating her birthday with three lovely young women who used to be Katie's caregivers.  Three sisters who still care enough to take Katie out for supper on her birthday.

This reminds me that there is love and kindness all around us.  Sometimes I can forget.  It's so easy to see the meanness, the hatred, the fear.  It's so easy to go there but I don't want to.  I want to see the goodness in others.  I want to believe people can be their best selves.  I want to hope.

I'm on holidays this week which is lovely.  I have time.  Time to waste, time to be productive, time to do as I please and that is a gift for which I am deeply grateful.

Katie is healing, getting better.  When we stopped by on Tuesday to check on her she had vomited everywhere.  Everywhere includes the walls in her case.  Poor bugger.  I changed her bedding and cleaned her room while her caregiver gave her a shower.  On Wednesday, her hand was still tender and she wouldn't take off her coat for her caregiver.  I convinced her to take off her coat by offering up a lovely, warm fleece blanket.  I haven't seen her since Wednesday.  Tomorrow, the big guy and I will pick her up and take her out for a few hours.  We'll drive, watch people, walk and have lunch.  And then we'll take her back home.  In my fantasies, I bring her home and she lives with us.  In reality, she pinches me, pulls my hair and bangs her face when she's upset.  She requires more attention than one person can give her and I still feel bad that she doesn't live with me.  I would love to tuck her in at night, but fantasies are not reality.

I took four hours off on Thursday and got caught up on life.  I shopped for last minute gifts.  Filled my windshield wash thing with fluid.  Bought cat kibble so that the cat doesn't starve to death, even though she is often convinced that her death from starvation is imminent.  Wrapped presents.  Cleaned the apartment. I feel peaceful.  I hate the feeling of undone things hanging over my head.  It causes me stress.

The laundry is done.  The apartment is clean.  Christmas cookies have been made.  Presents are wrapped.  Cards have been sent.  Snow has fallen.  And this morning we're off to see our granddaughter for a few hours. 

Life is not perfect or free of stress but it is good.  I'm thankful.

What are you thankful for today?

This is Miss Katie's wrist.  It doesn't look that bad in the photo.  She has another staph infection.  When she's upset she bangs her wrists against her mouth.  The calluses and scars have built up over time.  She never used to do this.  You can see old bruises on her wrist.

She also has a callus built up on her forehead, except right now it's a huge sore because she hit her head so hard that she split the skin.  When she's upset she bangs her head against the floor or the wall, or another person's head if need be.  Katie gets upset a lot.  She is chronically anxious.  We tried weed and we have tried anti-depressants with only limited success. 





Katie also won't keep her fingers out of her nose.  She doesn't pick her nose, she just sticks her fingers up her nose all the time.  I think that's how she's reinfecting herself. This is either the fourth or fifth staph infection this year.  We tried decolonization which worked for about five months but now she has another infection. 

She saw a doctor at a walk in medical clinic on Friday who took a swab and put her on oral antibiotics.  I find walk in medical clinics to be quite useless but her staff had already taken Katie there.  The doctors in those clinics don't appear to really care that much, at least that's how I feel.  Anyway, she got started on the oral antibiotics and they are slowly working.  She had a fever Friday and Saturday but the fever is gone now thank goodness.  The swelling and redness are worse but it's not spreading.  It is however painful.  Katie doesn't usually complain of pain but she does get very grumpy. 


Infection spreading up her arm prior to antibiotics.

 

I did some research on recurrent staph infections.  Decolonization is not overly effective, especially with non cooperative patients, a category which Katie would definitely fall into.  She won't keep her fingers out of her nose and has small abrasions on her skin constantly from her self abuse.  I'm not really sure what to do.  I do worry about her becoming septic or her bacteria becoming antibiotic resistant.  I feel like I'm failing my daughter but I don't know what to do. 

Poor girl was crying on Friday when they took the swab, they had to poke the blister with a needle.  She was inconsolable.  She also had a fever and probably felt like shit.  Yesterday was the same.  When she cries, I cry.  Today she looked much better but was still crying because I put a bandage on her wrist.  She hates bandages, screaming, crying hates bandages.  But the wound is open and weeping now and I don't want anything else to get into the wound.  So the two of use have been crying a fair bit these past few days.  I feel helpless.