Sunday, October 11, 2015

Hello Stranger

I cannot tell you how many times that I have written out a blog entry, let it sit for awhile without publishing and then simply let it fall into the graveyard of unpublished entries without a trace. Maybe I felt like it wasn't good enough or that I didn't have enough of a crisis going on to make it interesting enough reading. I am not quite sure but all I know is that months and months have gone by without a word from me. Silence is a good sign in my case. I am not quiet because I have bad news that I am hiding from or because of a lack of capacity to actually write. I am simply not writing because my normal life is taking so much out of me that I have nothing left over to inspire me to write.

I am living a groundhog day existence really. I am pretty much back to where I was this time last year. Exhausted, worn out and in pain. I never learn when to pull back, I never learn when to say stop and I never want to admit I have limits. So I push and pull myself through a life that places demands on me physically and mentally that I can't really handle. My body started yelping out in protest a month or so ago when my heart starting acting very strange. Now I have experienced my fair share of heart issues after surviving the world's rarest IV port wire misshap two years ago that could have easily killed me. My heart has never quite been the same since then and I have been on heart meds ever since. But suddenly my heart stopped responding to the meds and I was having irregular beats almost constantly. I thought it would pass and I worked through it in silence. But it got worse and worse until I made time to see my GP who referred me to the cardiologist. They found out that I was having an extra systolic beat every 15 seconds. Now extra beats are very common but that frequency is less so and when each beat takes your breath away, you can imagine what a bummer that must be. I know these extra beats aren't going to kill me one night in my sleep which is incredibly important info for me to keep my sanity in check. Because my nightmares around sudden heart issues are all too close to home after having lost my beloved father one random afternoon in his office from an undetected heart defect. I know bad things can happen to me and others that I love so forgive me if I freak out just a little when my heart starts behaving wildly and I go to a dark place in my head.

The solution to this heart situation which they say is not totally unexpected for someone who has been through what I have (if i had a dollar for every time a doctor used that excuse...) is to increase the meds to the max dose. The downside of this is the side effects which suck. I didn't realise that one of the biggest initial side effects was depression which thankfully explained a weekend spent watching greys anatomy and 9/11 documentaries in tears and social isolation. In addition, it regulates and slows your heart rate and pulse down a lot so the best way to describe your physical state is like driving through life with the emergency break on or better yet putting your heart in a vice grip. Now the one thing I don't need in my life is another handicap. I find working 100% in another language, being a mom and wife quite enough to manage in my already reduced capacity so when I have to take something that takes away some of that all too precious capacity, I definitely feel it. It has been hard adjusting and I just feel unwell and frustrated. I can't remember the last time I woke up feeling okay. Instead I am always nauseous, my head throbs or my alarm clock is the pain in my body instead of my actual alarm. This isn't the quality of life I had intended for myself at the age of 35. My doctor wants me to consider surgery to fix this but I am pushing back on another operation as I feel I have had more then enough the last 5 years. Maybe it will get better on its own without having to go into my heart with a scalpel. I don't want anyone to think I am not strong enough to handle normal life again. I have worked so hard to appear like I can handle it all and I have done a good job. I won't lose all the progress I have made in the last months. Vulnerability is not an option.

So things haven't been so easy or smooth sailing though I haven't been bothered by any more cancer crap which is definitely good. PET scan time is soon upon us though and I will be taking a radioactive trip in a month's time. I am hopeful things will stay boring and uneventful on the malignant front. And my hysterectomy is weighing heavily on my mind...the clock is ticking for me and I can't hide from that for much longer. The ovarian reaper is coming for me and there is nothing I can do. Oh what a fun couple of months to come!

Lastly it is October which means it is breast cancer awareness month so I feel I must mention it being a two time breast cancer survivor lady. I often find the campaigns and promos they do to promote the disease miss the mark and actually alienate the women who are actually touched by the disease. The flashy calendars or ads with celebrities dressed provocatively, breasts pushed out into the camera or the cute products plastered with the shiny bright ribbons. How does it relate to the ugliness of breast cancer? I know buttons with photos of mastectomy scars don't sell but the way we paint the harshness and horrors of the disease over in happy go lucky pink can make it all a bit too fluffy for my liking and not at all accurate. The truth is this disease destroys and it takes so much away and there is nothing cute about that. Just a week ago, my daughter asked me why she couldn't be a big sister. She assured me that she would help and be the best sister possible so could I please have a baby. I caressed her rosy cheek and told her gently "I know sweetie, you would be a wonderful big sister but because mommy got sick, it isn't safe for me to have another baby. There isn't anything more i would love to do but to keep mommy safe, it has to be just us." Her response nearly broke my heart into two - "But mom than I will never know what a real family is like." Ugghhh...the lump in my throat at that moment. Maybe that would be a good message to send in this month of pinkness - breast cancer takes.

The above example is one of the bigger and more painful things that cancer has taken from me and also from my daughter and it the one thing that I don't think I can get over. That is what cancer does - it takes without asking, without apology and without warning. That is a reason to not ever ignore it and to be vigilant.  So maybe that's my advice to you - beat it to the punch and always be in front of it.  For me, I can and have gotten used to having no breasts (not even reconstructed ones which most have), I have gotten used to a life with daily pain and I have gotten used to pressing pause every 6 months to wait and hold my breath until I am sure we are safe for a little while longer. But losing the choice to decide about my family and losing out on the opportunity to let her share her life with someone else, well that is one tough pill for me to swallow and cancer took that away from me. Because it isn't just me who bears that cross, it affects her and the life she will live. So my pinktober message to all you ladies out there is to be aware, be present and never be afraid to check something out. By doing that, you remain in control and can decide what you do because no one wants to lose the power of choice. And cancer should never have the power to choose and influence over how we live our lives.

Sent from my iPad

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