Kristal

This site is about my experience with cervical dysplasia, as well as anything else I might feel like discussing!


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Do I focus on the worst case scenario?

I was asked recently how often I think of the dysplasia my body is fighting, as it was perceived I spend too much time thinking about it, and it must be affecting me negatively.  That question got me thinking, and the truth is that after two years of going through this, I don’t think about it as much as I use to, which granted was a lot.  I’ve almost become complacent during the six months between follow ups, it’s a time to relax and just live my life, as I don’t have any control over the situation medically.  That being said, I do spend a lot of time tweeting and talking about cervical cancer and pre-cancer, and the reason I do that is to make sense of things.  I’m sure I’m not the only person who’s been affected by cancer who does this very thing, and I’m someone who does better when she knows more than when she knows less (Huzzah for anxiety!).  Let’s say I never allow myself to think about it…..well,  it’s still my reality, something that I need to accept. When I do think about it, I want to turn away from it always being a negative thing and having my anxiety destroy me. I’m tired of anxiety taking away some of my joy in life. Really, this is the one part of my life where I’m an extrovert, as I will gladly share and talk about how this has affected my life.  It’s not that I want attention, in fact I hate it. I just want to feel like I am normal, and talking to other people with pre-cancer or cancer helps me, and I hope I help them too.

When talk about it with others,  I am taking control of the situation through my story and making things a little more positive for myself.  I hope I am educating people that we didn’t ask for this through some behavior, or lifestyle, and that listening to your body can make a difference. I also hope that people become more comfortable with gynaecological words, and don’t flinch when I mention where the dysplasia is occurring.  The best part is when someone tells me that I’ve made a difference, like when I’m  told someone’s daughter will be getting the HPV vaccine, a friend scheduling a pap that they’ve been putting off, or someone speaks up about their condition and no longer suffering in silence, normalizing things for so many.  I’ve seen how this can bring people together in such an amazing way in my support groups, and the love and respect I feel for many of those in the group has made me a better person.

This is the only way I’ve found to be okay with this condition and the procedure last year, and of course I’m not really okay with any of it, but that doesn’t change the reality of the situation.  I can pretend it’s not there, but that just isn’t the truth, it is there and I need to trust that my body has the chance to fight it off for good.  So for those who worry about me and how my choice to be outspoken affects me mentally, you don’t need to, because now when I think about the dysplasia, it’s usually in a more positive way.  And those times my thoughts are darker? I call a friend, or I go outside and exercise, and I don’t let those dark thoughts drag me down.

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Similarities and Sadness

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Every time I go to the support group I learn something about myself, and today it was that I’m really not so different in how I view the world.  For the past year, I’ve felt very dissociated from who I feel is the real me, a happier, healthier me.  She’s someone who anxiety doesn’t bother, depression rarely touches, and doesn’t have vicious mood swings.  I don’t know how to be her anymore, and maybe I’m wrong that she ever existed.  But no matter what, in my mind, she’s living a better life, and has everything she could ever want.  So it was startling to hear the group facilitator say those exact words, that somewhere her family was existing in another world very happily, and that she wished they could be that family again.  It’s amazing that we all have these exact same thoughts, and not from someone else’s influence.  It’s not something I’ve talked to with anyone I know, as I don’t want people to worry about me, but yet here we support groupees are, all are thinking these sad thoughts.

I do know that this current me, well it is me.  And I am generally happy, even when I’m feeling a bit sad.  I enjoy my friend’s company, exercising, and spending time outdoors in the sunshine….oh, and my new favorite show, Tabletop!  I know this is more about feeling like I am not getting better quick enough, and somehow I am failing, because I tell myself that it is all I am good at lately when I am feeling really low. Really, it’s that I am still mourning a more carefree me, one who hasn’t been touched by pre-cancer, and doesn’t have to worry about anything. It’s not like that can’t be my future in some way, it’s not like I won’t change again to another version of me, but I need to accept a lot of things before that will happen.

If you do see the real me on your travels though, could you ask her to call home?  I worry about her……


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One week

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I know we say this all the time, but I have no idea where the time has gone.  My first follow up is next week on May 2nd, early in the morning.  I’m telling myself I will be ok, but my attitude lately says that I’m buying none of this bs.  I’ve been a bit up and down with my emotions, lacking sleep, and been falling into multiple depressive episodes…hell, I am probably just depressed.  I only seem to be happy when I am around certain friends, as they can distract me from myself, which is pretty consistent with depression. 

Looking back, these past six months have been somewhat comforting, which is odd, as I don’t like unknown situations, ambiguity, or being uninformed, but in this situation I am happy to not know a damn thing.  There is a comfort in being a bit ignorant, because next week, good or bad, I will have more information.  And even more when the test results come back at the end of May. Of course everyone I know hopes the results are good….but what if it’s not?  What if I have to start  this whole circus again?  What if I have to stay as a patient at this clinic for years?  What if things have progressed even further?  So you can see why not knowing is a comfort to me, it reduces my anxiety.  I know I am luckier than most people who deal with these kinds of situations, and I try to remind myself of that fact daily, but every detail of next week’s appointment still weighs on me heavily.

What’s even scarier, is that people would use this comfort zone to avoid their yearly paps, or their follow up colposcopies (if they are as unlucky as I am).  I read way too often of people who are not ashamed to admit they are avoiding going for a pap, as it is embarrassing, uncomfortable, or awkward.  I don’t even know if they realized how ridiculous that is, or how dangerous a game they are playing?!?  And that anyone thinks a world exists where people aren’t embarrassed on a regular basis? That seems ludicrous to me.  Avoiding paps has become a serious epidemic, and if my situation makes them rethink that idiocy, well then it makes suffering a little less horrible.  Even though I am terrified of next Friday, of course I’m going to go, avoiding the appointment would only make a bad situation much worse.  I’m also a huge fan of “everyday bravery”, and this is a prime example of that concept, which is in contrast to my weekend exceptional bravery of Grizzly Bear fights, cliff diving, and  drag racing 😉

Side note: you can’t fix things for someone who is depressed, you can only try to be there for them.  It’s the hardest job in the world to just listen to someone, and really just sit and say very little back. Be prepared that if you offer a bit of kindness, or lend an ear, it may open a bit of a flood gate, but no one should fear intense emotions.  To those who are depressed, remember, it is never shameful to ask for help, to take kindness when offered, or even ask someone to just come over and sit with you, above all, you need to do things that make you happy. 


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The Underwear Affair

I’ve mentioned previously that I would be participating in something called “The Underwear Affair” (June 7, 2014), which is an event to raise awareness and money for cancers that happen below the belt.  I’m not normally one to participate in a charity that is so huge, but I felt that there is a real lack of awareness for these cancers, and that lack of awareness needs to change.  I can’t tell you how many people I speak to who avoid seeing their doctor when they have bowel issues, or think pap smears are embarrassing and useless and won’t go.  I can’t imagine thinking this way as a pap smear saved my life.

My story

I went for a routine pap smear in January 2013.  It something I do regularly, and didn’t think about it at all.  That was until I got a phone call from my doctor’s office less than a week later, telling me there was abnormal results, and that I needed to see a clinic.  I again passed it off as nothing to concern myself about, abnormal results are fairly common, but when the clinic called a few hours after my doctor’s office…..I really began to panic.  I was told I needed to see them in about three weeks, as my results weren’t cancer, but they weren’t to be taken lightly either as they were abnormal glandular cells (AGUS).  Those weeks leading up to my first appointment were horrible.  I was so scared, and alone, cried all the time, but it was nothing compared to the weeks after the appointment. I won’t go into the deep depression I suffered for over a year, or the anxiety that was trying to drag me down, safe to say I was in a very dark and lonely place. At that first appointment, they found a cancerous lesion, and took three biopsies. Those were dark days waiting for my results, I can’t even really explain how messed up I was during that time.  I didn’t know if I would need chemo, and because of chemo put my life on hold, have all my reproductive organs taken out…basically I knew nothing and was scared about the future.  The results came back pre-cancerous stage one, and my colposcopist took a watch and wait approach.  This meant leaving the cells inside of me to see what they would do.  They got worse, very rapidly progressing to stage two,  and by my next set of biopsies in Septebmer 2013 the decision was made to remove part of my cervix.  That happened in November 2013, by way of a LEEP procedure.  I will go for my first follow up in May, to see what’s happened since the LEEP.  Since January, I have felt like things are really improving, both physically and mentally for me, so I am very hopeful of the results from my follow up.

Why I am participating

I am participating in the Underwear Affair because I want to change the perceptions that people have about cancer and pre-cancer’s that are below the belt, so anal, cervical, ovarian, prostate, just to name a few. There is a lot of stigma attached to these cancers, as they happen in “awkward” areas,  and there shouldn’t be any reason to be offended by them.  I would like to see people stop questioning a cervical cancer patient’s sexual history, and stop slandering these women, as you can get HPV from just one sexual encounter.  I want my friend who has just had surgery for anal cancer not to feel embarrassed when speaking about his condition, when he has no reason to be embarrassed.  This shame and stigma really affects our mental health and overall well-being.  Overall, I want people to stop judging and just listen, as that is the best thing anyone can do.  No one can fix our problems, except the medical team, and even their skills are limited.

Thank you for listening, and if you are so inclined, please see below for the link to my donation page.  Any donation is greatly appreciated.

Team: The Lady Bits

 


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Protection

Today something interesting happened.  I was seeing my massage therapist, the first time in over a year, and she immediately knew something was wrong with me.  She noticed that I was hunching my shoulders (mentioning I looked a bit like a linebacker, and that I was protecting my core.  When I mentioned the LEEP procedure I had, and the year of testing in my abdomen, it all made sense to her.  I was protecting myself.

I guess it should really come as no surprise to me, as I have done this kind of protection before.  I’m very aware of how I favor my right leg, ever since the knee fracture and surgery to repair the damage.  The key here is that I am aware though, and I always have been, right from the moment I was allowed to try walking again.  And I didn’t allow myself to put more strain on the opposite side of my body.

I wonder again if this is something that comes from the vulnerability you feel from gynaecological issues?  Maybe it’s feeling so small and scared of what’s happening in your body, that you begin to slowly close up inside?  The big C word?  Who knows.  All I know is that I was not aware that I felt I needed to protect such a specific part of myself from the world.  I’m highly self aware, and yet something so important about my body escaped me. I think it’s this line of research, a more mental component that really needs to be researched.  I can’t imagine that I am the only woman who acts this way after going through dysplasia, and I would bet it’s even worse in those who went through cancer treatments.


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I’m not sure what’s more important….

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…protecting myself from life, or actually living.  There are two really difficult parts of going through major trauma or illness.  One, is trusting that you can actually be a part of life, and the second is trying to control your depressive tendencies, and focus on more positive things.  Life doesn’t happen when you are ready for it, and especially not when you are prepared for it. For about a year I put my life on hold, even though the medical staff told me to live like I normally would.  But how can you not put your life on hold, or hide from the world when things get rough?  How can you just move on knowing that at any moment the doctors may come back with something far worse?  Well, you just have to, otherwise you are stagnating.  Since January, I’ve felt like maybe I can move on, and that is in large part to the ladies at the support group, who are an example to participating in life even when it seems like a waste of time.  I see them living with far worse situations (and realistically I know they are likely as broken inside as me), but they are bravely accepting their situation and trusting in good things.  It’s really all we can do, any of us, is live.  Is this easy?  No, of course it’s not, but as I said earlier, life doesn’t wait for you to be ready, and life isn’t inherently good or bad, it just is.

Ideas like this scare me, being normal scares me sometimes….. Trusting that I am making good decisions, and taking care of myself……doing what I need to do at any given moment, and just being normal.  That word comes up a lot in the support group, “normal”, like it’s something that is actually defined and real, like any of us know what that really is, normal.  I keep being told I am normal, that I react to life like anyone else would, but my lack of trust is strongest with myself, so I am not sure I believe the ladies when they tell me I’m okay.  I find it difficult to be vulnerable with others, though I am trying to accept that no one is really out to hurt me,  and that I need to put myself out there to the world, accept that I may get hurt from time to time.  I guess maybe that is normal…..

Farley

The above picture is of Farley, he was diagnosed with cancer in his hip and was given six months to live, he is now at two years.  He doesn’t know that he should be sad, angry, or curse the world for his misfortune.  He just knows he was once in pain, and now isn’t, and lives in the moment.  We can say it’s because he’s a dog and doesn’t know better, but it’s also maybe a lesson that we can all learn, to accept life and change our attitude in response to it.  Easier said than done, but being negative doesn’t really help any situation I’ve been involved in to be honest.  Sometimes you have to accept the bad situation you are in, and try and find the good around you to get through it, and trust that….well, just trust in general that life isn’t out to get you.


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Article on Managing Fear of Recurrence

Sorry about being such a terrible blogger as of late, just had a lot on the go, and mulling a number of ideas for the blog. As well, a few important people in my life are dealing with their own battle, and it has been a lot to accept in a short amount of time.  I did find this article today about managing the fear of recurrence, which is something anyone touched by cancer knows is something quite difficult to deal with.  You are often told to “just live” in between your appointments, or while waiting for follow-up, but it is probably the hardest thing to do, and really only gets easier with time. 

http://www.mskcc.org/blog/six-tips-managing-fear-recurrence

I should be posting with more regularity soon.