They broke me

Well I have written a bunch about my diagnosis of cancer and journey through healing.  Through all of it I have managed to stay mostly positive and even grateful.  You have commented on this time and again.  You say I am inspiring and powerful.  You say I make you feel what I feel through my words.  You say you look forward to my next post.  You say I am strong.

All of that was finally feeling true for me too.  I mean everything I have written is true, but for the longest time I didn’t actually believe that I was inspiring anyone.  Every comment I received from you was a pleasant surprise, something to read and re-read, as though I might be convinced.

I truly felt the inspiration that I am for the first time about a week and half ago.  I was sitting in the IV room after a treatment, just chatting with the wife of a new patient.  I wasn’t saying anything in particular, just really listening to her concerns and having a genuine conversation.  Then all of a sudden, I saw myself briefly through her eyes and there I was, inspiration.  It was clear as day.  I got it.

I am inspiration.  I am connection.  I am powerful.

That is until my most recent stint in the hospital.

I thought I was going in for a fairly routine and uncomplicated procedure.  A hysterectomy. No big deal.  I am definitely done having babies.  If removing my uterus and ovaries will decrease any chance of recurrence then why not?  A preventative measure that although somewhat invasive, has come a long way.  The doctor assured me that I would be back on my feet in no time.  It was funny actually, while waiting to be taken to surgery, I joked with Mark that although this surgery is way more invasive, it feels less serious and daunting than the lumpectomies did.  Maybe because the C word was attached to those surgeries…

Honestly though, surgery felt like old hat to me and right up until the operating room I remained calm.  I had one brief moment of, “did I squeeze the kids tight enough this morning?” and then the oxygen mask came to face.   I was so aware this time that I could smell and taste the gas I was breathing in.  I never could before.

And then like hitting snooze in the morning, the slumber was over.  I awoke in the recovery room to a whirlwind of noise and chatter.   I have had more than these 3 surgeries in my life and can tell you the recovery room has never been kind to me.  I have always felt alone and scared upon awakening from surgery and never understood why they don’t let anyone familiar in that room.  Not only can your loved one(s) not be there, but all of the staff are different and unfamiliar too.  This time was no different.

I could hear two nurses talking and could tell they were with me but I couldn’t see them.  They weren’t talking to me, just about me.  They kept behind my head.  I kept waiting for them to come around to the side of stretcher so I could see them, but they didn’t.  And then they were gone.  I was alone.

Turning my head, I could see several nurses surrounding another patient and waited what seemed like ages for someone to come back to me.  I began to breathe faster as anxiety set in.  And then the pain kicked in.  I began to cry and moan, praying that someone would hear me and help.  Finally a nurse came over to me.  Before relief could set in though, she opened her mouth to reprimand me for my state of mind.  She told me that I was making it worse for myself and that she couldn’t read my mind.  I told her that I felt alone and she snapped at me, “there are 15 other patients in the room, you are certainly not alone”.  I tried to explain to her that I could calm down if only she could stay and hold my hand for a minute.  She told me that was not possible and was gone again, just like that.

This is a serious fault in our health care system.  Where is the care?

Thankfully, the porter came very quickly and said it was time to move.  Before I knew it, I was being wheeled into what was to be home for the next night or two (hopefully one, I kept saying).  Mark was already there waiting for me.  Relief.  I cried to him about what I had just endured and he assured me he wouldn’t leave.  I was not alone anymore.  I settled in and visited with him and a couple of dear friends, in and out of stone cold madness for the next few hours, squeezing every last minute (and then some) out of visiting hours.

The night was long, waking every 2 hours to pee (which was an ordeal each time).  Up at 7am, I counted down the minutes until Mark would arrive, after dropping kids off at school.  I knew he would bring me a smoothie to replace the disgrace of a breakfast tray that had been left for me.  Seriously, how black coffee, green jello, and apple juice will help someone heal is beyond me???

grace hug

As the day progressed, I began to feel better.  The doctor thought my drain was too fullthough, and along with not having had a bowel movement yet (TMI?), she advised that I stay in the hospital an extra night (shit-no pun intended).  As against the idea as I was, I settled into it.  My girls came to visit for a while and gave me lots of love.  When they all left I felt like everything would be okay.  One more night and home tomorrow.

But that is precisely when the real nightmare began…

As soon as the door closed behind my family, the nurse came in to do my vitals.  She didn’t even have the blood pressure cuff around my arm yet when she matter-of-factlynotified me that I was going to be moved.  “Where?” I asked.

To the hallway.

“No.  It cant be.  How could you move someone to the hallway?”

“It’s not that bad”, she said.  “There is a curtain.  It’s private.  Will you at least take a look at it?”

“No.  I wont stay here.  I am going home.”

Before I could even text Mark to come back and get me, two nurses had my bags in hand and moved me to the hallway.  They carelessly tossed my things on the new bed.  The bedthat was in a tiny alcove of the hallway with a curtain separating it from a busy thoroughfare of doctors, nurses, and cleaning staff.  The lights on the other side of the curtain were bright and unfriendly, as were the countless conversations that always seemed to take place directly on the other side.

Mark could not believe the news.  He had just arrived home and hadn’t even put the girls to bed yet.  That did not stop him from racing back to my rescue though.  By the time he arrived back at the hospital, the nurses had convinced me to wait  for the resident doctor to come and check me out before leaving.

To my surprise, the resident arrived quite promptly and wasted no time befriending me.  She was concerned about me.  Concerned about the drain and my impending fever.  Fever?  That was news to me.  She explained that although I didn’t have a fever, it might be because I was taking T3’s which would keep a fever down.  She said she would need to see a blood panel on me before she could determine if I was fighting an infection or not and that going home with an infection would be extremely detrimental to my health.  And then she too was gone, with the promise to return once the blood work was back.

The lab tech came to draw blood and the tears started pouring down my face as heaving sobs overtook my body.  I was worried the blood work would reveal an infection or worse.  Once you have gone through the cancer world, the words ‘white blood cells‘ trigger strange reactions.

I’m sure you can imagine that when your insides have just been cut up and removed that a heaving belly does not feel very good.  I couldn’t stop it though.  Every time I thought I was calming down, the heaving would start again.  Mark did his best to help me  but I don’t think there was really any hope.  The sobbing led to unbearable pain even though the pain medication should have taken effect and that was the final straw.  I was convinced I had an infection.  And I needed to mind the doctors.  Besides, they warned (or threatened) me that if I left against medical advise, that they would not send me home with any pain medication.

They broke me.  

Mark left as soon I was settled and told the nurse to ensure that I was woken up at medication time.  He was worried that if I waited too long that I would wake up and panic again.  She promised him that she would do so and he went home to get some rest.

I woke up an hour or so after my medication was due. At this point, I think I had just accepted that nobody working that night actually cared about me so I didn’t panic.  I just slowly got up and shuffled down that hall to the nursing station and requested it.  Without so much of a blink of an eye, let alone an apology, my nurse said she would be right with me.

By the way, I did not have an infection and that resident never came back to see me after the blood work results came back.  It was all a scare tactic to get me to stay.

I am finally telling this story not for your sympathy.  It was months ago now and I am over it. I do think it is important to tell though.  It is a dark example of the care that is (not) being offered in our hospitals.  Since having this experience others have shared similar stories with me.  One of the nurses that night even urged me to write a letter to Alberta Health Services.  So that is what needs to happen.  If I don’t speak out, who will?  What will change?  I plan on sending this story in right away.

Do you have a similar story?  Did you write a letter?  Would you care to share your story here?

M.I.A. and getting real

Obviously, it’s been a while.  Not really sure what that’s about but I have a few guesses and I think now is as good a time as any to get real about it.

As I’ve mentioned before, cancer is a busy business.  I have been to so many appointments in the last few weeks that I’ve hardly had time to sit down and write.  Oh that’s a good story.  Of course, I have still had time to sit down and write, I have simply chosen not to.

I’m too tired at the end of the day.  Another good story.  I have been tired, but not too tired to write.

I’ve been too emotional to write.  This has some validity in that I have been emotional.  Apparently it could take a couple months for my body to get used the hormone medication I am taking.  BUT… it’s no reason not to write!

I don’t know what the most important thing to write is.  This is closer to the truth.  I have somehow allowed myself to get caught up in a very active debate in my mind about what the best blog to write is.  Ha.  That is so laughable.  I have so much to write that I write nothing.  Definitely not the first time that has shown up in my life either!

The truth is, last week I got scared.  I let doubt creep in.  

Funny too, because just a few days before that, a friend asked me if doubt ever creeps in.  I said, “never”.  I was so convinced that I was doing the right thing.  I felt it to my core.  I had done a tonne of research and spoken to many people about what I was doing and I truly knew that I was healthy.

So what happened?  While having a conversation with another friend about things, a woman I had never met piped in that I should reconsider.  She said that women under 40 die if they don’t do chemo and radiation.  She reminded me that I have four kids who need a mom.  It honestly wasn’t anything I hadn’t heard before.  It’s that fear-based mentality that I have always refused to subscribe to.  For some reason though, it crept in and took up residence in my thoughts, for days.

I cried.  I slept.  I gathered more information.  Initially I was scared to speak to anyone about it for fear that they would try to convince me one way or another.  It seems everyone has a biased opinion about cancer.  I finally opened up to my husband.  I admitted to him that I wasn’t sure anymore, that doubt had crept in.  He of course, remained steadfastly supportive to whatever I chose to do.  He was open to discussing it and supports me no matter what.

I love that!  I love that he didn’t take the weakness as an opportunity to influence my decision either way.  I didn’t want anyone to give me the answer.  I simply needed guidance back to that place of knowing.

I’m there again now.  I see things clearly.  I am healthy.  I continue to make positive choices daily for my perfect health.  

So now that I’m back, I have a lot of catching up to do, beginning with an update.  Forgive the potential influx of posts over the next couple of days but I have a lot to share with you!  Thank you for continuing to follow along my journey.  Writing to you has been so therapeutic.

You won’t believe what the oncologist said…

I started writing this in Vancouver, a couple of weeks ago, right after three days of back-to-back to appointments.

Well, it’s been a very busy week, that’s for sure.  Before I got sick, I thought people on sick leave were taking it easy, as they should.  Turns out cancer is a full-time job!  Between all the doctor’s visits, treatments, support group meetings, and paperwork (there is more than you might think), I may just be busier now than before!

Last Friday, I got a call from the surgeon’s office informing me that the referal to the oncologist had finally been received and as per his request I would require three big appointments this week.

Monday was the bone scan, entailing a radioactive injection at 10am, and then a scan later in the day.  It was nice that they let me go home in between but it still took up most of the day.

Then Tuesday, I had to be in High River for 9am to drink a massive amount of the most disgusting “water” you can imagine, s l o w l y, over an hour and a half.  I would have given nearly anything to be able to just gulp it back and get it over with…  CT scan of my abdomen and chest followed (that’s the big tubular machine you see on TV, not so scary).  The funny thing is they hooked me up to an IV for the scan and injected some kind of dye or something into me for a couple of the scans.  The nurse very kindly warned me that for about 20-30 seconds after the injection, I would feel like I was peeing my pants!

Not to worry, I did not actually wet my pants!

Finally, yesterday, I met with my oncologist (not the one I requested).  G-U-L-P.  He began the meeting by walking in smugly and stating that he had his work cut out for him to sell me on his plan.  He then went on to say all the predictable things.  I MUST have chemotherapy (6 rounds), radiation, and hormone therapy.  Then I will be referred to a geneticist for testing.

Here’s the kicker.  He then pulled out his little prefab diagram and very slowly and patronizingly explained to me the percentages he had laid out for me.  He had ten sticks drawn on the page.  To show me that there was a 70% chance of recurrence, he circled,

wait for it…

7 of the sticks.  What a revelation.  Thank you doctor for the math lesson!

He then went on to explain that by doing the recommended treatments, I will reduce the chance of recurrence.

I declined chemotherapy.  As he handed me a one-inch thick stack of reading material, he implored me to think about it for a week and get back to him.  Okay.  Will do.

Ps. the bone scan was clear.  Still waiting on CT results.

I have said it before and will say it again now.  I am not against anyone doing medical treatments.  I believe people should choose the best thing for themselves.  For me, the best thing right now is to be healthy, and I am.

Do you feel you have a choice when it comes to health care?

Coming out about cancer on Facebook

I dont want to lose this post of mine from January 27, 2013 in the Facebook archives so I am recreating it here.  Please read and respond with your commitment to yourself!  And spread the word!

Hi Friends,

I’m writing to let you all know that I have been diagnosed with breast cancer. Shocking news I bet! It was to me anyway. Not to worry, I am taking it all quite well and looking at the experience overall as a blessing.

I am going in for surgery on Tuesday to have it removed and will take things from there.

Some of you will not know what to say. Others will want to do everything to help. Both reactions are perfect. I know I’ll pull through this and that you all are supporting me in your own way.

For those of you who really want to help in some way, please do send your
love, thoughts, prayers, and energy my way, especially on Tuesday, but also everyday after that as I build my body and immunity back up over the coming months. I believe it all helps!

What I want most of all, is for this to have happened for a reason. I want the people I love (that’s you!) to be happy and healthy. So, if there is one thing you could commit to in order to be better to yourself and your wellbeing, then I want you to commit to that and message me about it so that I can feel like positive things are coming out of this business!

Jenn