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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November Follow up – results finally in

This will be a quick entry for the blog, as I have been working on another blog post.  My tests came back showing “features”, which means something is still there.  I’ve been told that features are a stage before abnormal cells, so it’s very low grade at this time. I’m not sure what’s happening, if my body is fighting it or if it will progress like last time.  All I know is, that I am sadly getting use to the situation.  I will be back for more testing in May 2015, so maybe we will get answers then?  Until that time, I will just do what I normally do and just live my life as best I can.


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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.

Paperwork

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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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