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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Moving Forward During a Retreat

I’ve been avoiding blogging for some time now, and I’m not sure why that is exactly?  I wrote this a few weeks ago and promptly avoided posting.  Tonight, all the inspiring talk on twitter about Stand Up to Cancer made me realize I need to post more often, and be open about things, like last week’s specialist appointment. So before I talk about that, I should really post last months entry…..

I would never have said I was a girl who would like to be on a retreat. I do love to talk about feelings and emotions, and I love the outdoors, but being stuck in the middle of nowhere with a large group of strangers?!?! That’s just not me….though many of my friends would probably say that is something I need to do, be okay with the unknown. I generally prefer smaller group settings, something that is more on the level of a one on one interaction.

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I am recently back from YACC’s retreat yourself BC, and I have to say it was probably the best decision I have ever made to go on that trip. I owe a lot to a friend who convinced me to come in the role of her supporter, so that I could attend the event. It was a very last minute decision. I know the term “gets it” is over used, but let’s be honest, we want people to “get” us, so that we feel normal again. We want to feel accepted, safe, and that people care about our wellbeing. That is what I got this weekend. Acceptance. Friendship. Kindness. I could go on and on, but I won’t bore you with those kind of details (yet), instead, I will go into this idea of acceptance. Whether it’s friendship, dating, family, etc., relationships make our world. These relationships provide comfort, a sounding board for crazy ideas, and they listen to our shit (that is a skill that so few people have as we are all fixers!). Currently, my family life isn’t what you’d call healthy, my dating life is well…..there’s not a lot going on there, so it’s friends that provide the support, companionship, and love that I need. It’s been a difficult year as many know, and I would say for most of it I was lost, alone, and very afraid…that is until I found a cervical cancer support group.  I also found Localife, and made so many good friends there, but I still felt like a bit of a fraud in comparison to the people in these groups as I was dealing with an aggressive pre-cancer, not cancer itself….but they funny thing is that I identified with them so much more! They understand the constant doctor’s appointments, the biopsies, the fear, all the bad things that come with a dealing with any type of cancer. For example, this weekend, I got to talk about how one dates when you are dealing with cancer (when do you tell them? First date? 12th? Never?), how one deals with physical and emotional side effects, and even simply, how does one feel desirable in any way at such a vulnerable time? No one ever told me I was a fraud, or that I didn’t belong, and it made me think that maybe we need to spend more time caring about each other, and not so much time trying to pigeon-hole people into constrictive definitions. That way, we might not feel so alone and less deserving of support when we go through a difficult period in our lives.

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This isn’t to say that my diagnosis is the same as everyone in the community, as it comes with it’s own unique circumstances, but that is true of any cancer diagnosis really. What it means is that I just feel a lot less alone. I feel a little more capable of handling my future, and that maybe I can  move ahead and work on things I want in my life. I really don’t know what that entails right now, and I don’t have to make the decision today. I do know one thing though, it involves wanting to make more connections with people, both friendship and romantic wise. It’s more being open to any opportunity that might present itself, but also just being okay with what I have now.

That, I haven’t laughed so much in a weekend in all my life! It felt so good to laugh at the same time that you were facing your reality.


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It’s not over……

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I was hoping my next post would be all about sisterhood, friendship, and a wonderful Saturday spent running around Calgary raising awareness for below the belt cancers…..well, it’s not,  so here it is…….things aren’t over.  When I had my appointment on May 2nd, and the doctor didn’t see anything, I allowed myself a moment of hope, and that hope grew over the past month.  It’s not that I am saying “don’t hope, it’s pointless”, it’s more that I am a little down that there are still abnormal cells present, and my fight is not over.  Obviously everyone wants to get better, and I know I am very lucky that everything has been caught so early, but right now that’s not helping. Everything is really low grade, and I am told to be positive, since the doctor isn’t concerned.  I’m hoping my body can fight this, and I’m not going to stop my current trend of exercising and feeling better about myself.  So the blog continues!

Oh and I will get to that post this week about the Underwear Affair, as I really had a great time.


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Unexpected Opportunities

Life can be really random sometimes.  Something you didn’t think was a possibility, or expect could ever happen, suddenly is an option in your life.  I was emailed by a communications coordinator with The Underwear Affair on Monday, and to be honest at first I thought the email might be spam.  I was asked if I would be interested in sharing my story with the media (both before and on the day of the event).  It seems she had read my blog from the link I provided on my profile, loved it, and she felt I had a really inspiring energy and positivity towards my situation.  I don’t take compliments well, it’s not that I don’t believe in myself exactly, but I just find it hard to believe that others might find something worthwhile in what I am doing.

Simply put, I will be available for any media requests, whether it is sharing my personal story, sharing the message of preventative measures finding the pre-cancer early, or promoting The Underwear Affair.  I’ve been told I can talk about anything I want and that I can promote my support group, Wellspring, YACC, and really it’s whatever I am comfortable sharing with the media.  This amazing opportunity coming all because I blog, as I would never have put myself forward as a candidate otherwise.   I never started this blog for fame and glory (but really we all have grand dreams),  it was more a release for me than anything, and a way to connect with others going through the same thing. I participate in Monday Blogs to find people, more than for the self promotion, and it’s probably something I need to get over, a fear of self promotion.  Though I will say that I’m so proud when someone follows me, and really the experience has renewed a love of writing that I lost long ago.  So this media opportunity is really just….amazing.

I’m very curious to see what media outlets might be interested in speaking to me, and I have been told to blog about the experience as much as I want, so expect lots of pictures and stories.  It’s cliche, but if I can convince a woman who has never been for a smear to get her first, or show young women it’s not embarrassing or horrible to have one, than it’ll be worth it.  I’d also like to show that people with pre-cancer, and cancer, are normal people, and that we don’t need to be feared.  We want to live, love and be as happy as anyone without this disease, sometimes it’s just that we might have to put those things on hold for awhile to kick cancer’s ass!

The Lady Bits


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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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Six Month Follow up

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So the day finally arrived, my six month follow up.  I’ve wanted to get this over with for about a month now, but I was also really afraid of what they might find.  I was pretty nervous, but it was more from association, as I now associate the Foothills Hospital with bad things (this isn’t normal for me and hospitals). It was a busy Friday at the clinic, while I was there three people were prepped for a LEEP, and thinking back six months about my LEEP added to my nervousness.  I guess I haven’t really gone through a standard appointment at the Women’s clinic, so let’s do so while I talk about my appointment.

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You can see my file in the picture, at some point one of the nurses grabs it and takes you back to an office.  I’m fairly used to this process now, and less nervous about what will be said.  My first appointment I was a shaking, crying mess to be honest, especially because they go into detail about what might be found, and what caused the issues.  The nurse went through my whole file, all the biopsies (I’m now at 10 biopsies in 14 months), and had me sign the papers that said in bold detail “COLPOSCOPY WITH POSSIBLE BIOPSIES“, which cleared any uncertainty I had about what might happen.  After that, I finally got to ask the question I’ve been struggling to have answered since the LEEP, was it necessary?  Please don’t get me wrong, I believe it was the right thing to do, but my family doctor wasn’t so sure, and really I’m not sure she’s the best person to give me advice in this area.  I know that things got better for me afterwards, and that I’d rather those cells out than still in me, but many feel the procedure is an abomination. The nurse and I had a good long talk about how if I was 21 they would have allowed me to go longer with abnormal cells, as my body was more likely to clear it, but at 36 years old, you don’t clear this kind of thing as easily.  She also said that had it cleared, there was a high chance that it would come back in the future, and very likely at an advanced stage.  I know the doctors at the clinic have way more experience with dysplasia, cancer, and LEEPs, and I trust their judgement completely.  Hearing what I was already thinking really helped me, and I finally felt like I was getting some answers.  I was also commended on getting Gardasil, as it’s been shown to reduce the number of future visits for people in my situation.  I know there are people who believe it kills, and it’s something terrible, but I personally would love to not see the clinic much over the next 35 years.  As well, if I had a daughter (or son), I’d rather they didn’t have to attend an appointment like this in the future.

I was then taken back to the waiting room, since there was a bit of a backlog with the number of LEEPS that day.

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Colposcopy

There are many people who think that colposcopy means biopsy, and nothing is further from the truth.  A colposcope simply views your vaginal wall and cervix in high definition (the horrors of HDTV be damned), and allows the colposcopist to see any abnormalities.  It’s only if they see something abnormal that they will take a biopsy. As with any pap smear, you have to strip down below the waist and scoot down on the table until you are almost falling off, with your feet in some lovely Tinkerbell patterned fleece covered stirrups (I’m told this is not the norm for most stirrups :p ).  I had to wait for the doctor for some time in that undignified position, so the nurse and I chatted about anxiety, travel, and the lovely Calgary weather.  The anxiety chat came from the fact that you can actually watch what the doctor does during the whole appointment on a TV.  I’ve always felt this was a bad idea, even though I am curious, and I think having a panic attack with a speculum inserted probably isn’t a good idea.  The nurse got tired of waiting for the doctor and went to look for her, the nurse came back quickly and said it would be another 20 min or so, and to have a nap (I asked for my phone, as I wanted to take some pictures for the blog).  I can’t say sitting in that position for 30 min is in any way dignified, but at least they have covered the previously exposed windows (no, I’m really not kidding about that)! I had wondered if they were one way glass, guess I have that answer now too!

Dr. Lam finally made it in, and we got the procedure underway.  It’s become a bit more uncomfortable with the scar tissue, and stenosis, but I honestly can’t complain, the situation could be a lot worse.  She did a pap, and then started the vinegar test, which makes abnormal cells go white, at most it stings a little.  There were no abnormal cells that she could see!  But there are a number of cysts in the area, likely due to my healing cervix, and she did take a biopsy of one.  Everyone has cysts, most just aren’t aware of them, they are usually benign, and generally cause no trouble, but she wanted to biopsy as a precaution.  I also figured correctly, that they would do an endocervical cutterage biopsy (ECC) as they can’t see what’s going on in my uterus during this procedure.  That one is always very uncomfortable, but again I really can’t complain as they are just being cautious.  Lastly, she applied the Monsel paste to stop the bleeding, which she always calls “fluid”.  That always strikes me as odd, but I know doctor’s are used to using words that are somewhat vague.

The appointment ends

The doctor was really pleased with the results overall, and of course I was as well.  It usually takes me a few minutes before I am ok to sit up, as I get a bit dizzy after, and so the nurse discussed the appointment with me while I drank some juice to get my blood sugar back up to normal.  We discussed the weekend while I got dressed, and usually after my appointments, I take it easy and go home to watch Netflix in bed.  Though I have for the past month really been wanting to be around people, which is really odd as I’m a fairly big introvert.  As well, the after effects are never pretty, especially with Monsel paste, but overall it’s just a little cramping.  These appointments can be nervewracking, but they are not to be avoided, same with a pap.  They may be awkward and embarrassing, but I would think it more embarrassing to not go for say 15 years, and then find out you are dealing with a worst case scenario.

It was a long few hours there, but I’ve been home and had a lovely nap.  I will get the biopsy results around the end of the month, but it feels like a huge weight is off my shoulders, and though I’m not ready to totally celebrate until those results are in, this is the best case scenario I could have hoped for…..and as many know, I needed good news this week.  I know I am a very lucky girl (maybe not in dating, or being graceful and not clumsy), and things could be a lot worse, and I really do appreciate my medical team, and every friend who gets me through this challenging time.

Onto November!  And my one year follow up!  And so I can make you all laugh…..the best selfie ever!  And yes, I do take the worst photos ever, not photogenic at all, much more attractive in person.  If anything, I would suspect that Jay Leno is my father…..

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