I love what this lady has done to commemorate her experience with breast cancer and a double mastectomy. Last week I posted about dealing with the scar but I never thought of getting a tattoo to cover it up. I … Continue reading
This post is inspired by my beautiful friend Sara. She is following her dreams, inspiring people daily, and it just so happens that she also lives with a disability. In her recent post on the Power of Imperfection for the Love Infinitely Project, she discusses how her imperfect body has taught her valuable lessons, specifically regarding imperfection.
“(Imperfection) is universal, shared, and normal, and it is by truly recognizing this, that the negativity we often associate with imperfection is dissolved, and it becomes devoid of its power to keep us small.” – Sara Notenboom
I love that! Universal, shared, and normal. Yet we constantly strive for perfection, judging ourselves for not ever getting there.
I have to admit that embracing imperfection is absolutely a work in progress for me. I have always struggled with self image issues and since my surgeries, this is no different. It becomes plainly obvious to me when I am in the change room after hot yoga and all I really want to do is shower and put dry clothes on. But what do I actually do? I find a bathroom to change in or I throw a hoodie on and wait until I get home.
I am embarrassed of my scar. Maybe embarrassed is not the right word. I am acutely aware of my scar. I don’t want people to see it. I don’t want anyone to stare. I don’t want people to feel sorry for me.
The thing is, I’m not sure that is the response I would get. When I was at Silverwood this year I saw a woman proudly walk by wearing a bikini. She had no hair and a huge scar the length of her abdomen. When I saw her I did not feel sorry for her at all. After all what was there to be sorry for? She was proud. She was happy. She looked beautiful and strong and healthy.
Our scars do not define us. Our attitudes do. Our actions do.
So I am working on it. My first step was to get changed the other day after hot yoga. There was no one in the change room at the time but we’re taking baby steps here! Sara’s post reminds me that I am who I am, and I am beautiful, strong, and healthy too!
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???
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?
Don’t get me wrong by the title. I am doing really well since surgery #2, as I’ve mentioned to several of you recently. It’s true. This surgery was WAY easier than the first. I guess because they didn’t remove lymph nodes and I therefore did not need a drain. The range of motion in my left arm was supremely disabled after surgery #1, so much so that I could hardly change my shirt or brush my hair. Day by day, my range of motion got better and coming out of surgery #2, I am happy to report it was not negatively affected at all.
So, recovery then was way faster. I was even able to eat at the hospital before being discharged. I only took pain killers for maybe 3 days and now (10 days later) am pretty much back to normal.
So why the sadness then, you ask?
Well, it has come up in meditation. The first time I noticed it, a couple days before surgery #2, I was doing a lying meditation in bed. I was focusing on my breath and of course frequently drifting off into thought (meditation takes practice and constant reminders to come back to focus). As I delved into a total body scan, whereby the goal was to attend to the whole body and sense which spots or areas were troubled or tight or uncomfortable, my heart stood out.
My heart hurt.
It felt heavy and sad. It was kind of weird because I don’t typically feel sad, at least not for myself. Even when I was diagnosed, I wasn’t sad for me, and only really got upset when I spoke with others about it. I can feel others’ sadness but not usually my own. I was not upset about the feeling and didn’t cry. I simply stayed with it for a few minutes before moving onto another ache. I accepted it completely.
Of course there’s sadness here. DUH!
I noticed it again just prior to being wheeled into surgery #2. I was told after surgery #1 that how one feels going into surgery is typically how one feels coming out. If that feeling is anxiety then one might wake up screaming. If it is calm though, one would likely wake up calm. Remembering that, I thought that it would be a good time to practice the mindfulness skills I’ve been learning and practicing in group.
My initial instinct was to do another lying meditation and just try to calm my whole body, however, as soon as I relaxed, the sadness was profound. I even started crying. Then I started to freak out a bit because I was thinking, “NO… I cant be upset when I go into surgery or I’ll wake up upset!” Okay, so I was a bit of a wreck.
So, I switched to a “mini”. Mini’s are something we learned the day before surgery in group and involve breathing in a particular way (turns out there are several ways to meditate). There are a few different ways to do a mini that I wont go into here, but the one I chose to practice in those moments before surgery, was a square mini.
The square mini includes 4 parts of breath, all equal in length (like a square). Breathe in for 3 seconds, pause for 3 seconds, breathe out for 3 seconds, pause for 3 seconds. Repeat. In group, I initially found the pauses, especially after the out-breathe, very difficult but surgery day, it worked perfectly. It managed to calm me right down and to (miraculously) keep me solely focused on breathe for the good part of 2 or 3 minutes! I was calm going in and calmer than usual coming out. Success.
Finally, this past Wednesday, I shared all of this at group. The doctor who leads our group said that often when people notice sadness, their initial reaction is to push it away as it is an unwanted or unpleasant feeling.
“Don’t push it away”, he said. “I understand why you did pre-surgery but I encourage you to sit with it next time you notice it. Be with it. Notice how it feels physically in your body. If sadness is there, let it be there and get to know it.” (this is loosely quoted from memory).
He also warned that people often say, “I’m sad.” This is an inaccurate statement though because they are not sad, rather they are many things (I am a wife, mother, sister, daughter etc). By labelling oneself as “sad”, one is almost encouraging the feeling to be all consuming. It is more accurate and beneficial to say, “Oh, sadness is there. There it is. I know that feeling,” and accept sadness as a feeling one is experiencing rather than a label of who one is.
Sadness is here somewhere and my mission this week in meditation (“safe” meditation at home alone) is to welcome it and get to know it better. The reason I say “safe” is because I know this will require time alone for me to fully embrace.
Do you push sadness away or have you gotten to know your sadness?
It is 8:30 am as I drink a final glass of water before surgery #2 and reflect upon the last month and a half.
- I got the breast cancer diagnosis on January 7, 2013.
- Had lumpectomy on January 29, 2013.
- Met my naturopathic oncologist, Dr. Matt Pyatt, on February 5, 2013.
- Found out on February 11, 2013 that the surgeon did not take enough out and I would require a second surgery. Also found out that the cancer in my body responds to hormones.
- Began a Mindfulness Based Stress Reduction (MBSR) Group on February 13, 2013.
- Had my first IV vitamin C therapy on February 14, 2013.
It was at the MBSR group that I really began to reflect. Another lady there, whom I happened to sit beside is dealing with breast cancer for the second time. She went on to tell me how she refused chemotherapy and radiation the first time and will again. I immediately felt connected to her. She then went on to ask me about my treatment plan and that is when I realized I don’t even have one yet.
I don’t have a treatment plan!
Reflecting now, I am wondering a whole lot of things.
If this cancer is hormone receptive then why have I not yet been started on hormone therapy?
More importantly, why have I not yet been referred to an oncologist?
Why have I not been hooked up to the resources that everyone else has?
As you probably know, I am looking at every alternative to chemotherapy and radiation that I can. That being said, I do want to hear the oncologists out. I plan to know the benefits, success rates, and downfalls of every treatment and make a decision from there. The problem is, I still don’t have access to the information!
So today, right now, I am preparing myself to go to the hospital for surgery #2 and I have a couple of goals.
- Get it all! Well I guess this is my goal for the surgeon not me, but still important!
- Stay calm and positive.
- Get my questions answered.
Overall, I am feeling very positive about things. I am confident that today will go well. Your support, prayers, love, and thoughts mean the world to me. Please keep it coming!