Cancer pain. 

Cancer pain manifests itself in various ways. Today I will deal with the physical pain.

The Big C is sometimes referred to as painless, in that you may have some nasty tumor growing inside of you and you don’t even know as there is no pain and there are no symptoms. Now while this holds true in many cases, which can be why cancer is so difficult to detect until it is very late in the game, it is not always the case. 

Sometimes cancer can be very painful. Typically when cancer metastasizes to the bones it can be excruciatingly painful. Additionally some cancers themselves are so large or they may impact tissues and organs in the body, therefore rendering them extremely painful.

I am lucky (which seems to be an interesting choice of words given the multiple cancers) that most of my cancers were not painful nor were they caught too late. I usually found some sort of bump in the early stages. This was both due to my mom and I’s surveillance (literally my mom would periodcally come up to me and molest me just to make sure there were no new bumps) as well as thanks to the screening as a result of the Li Fraumeni. 

However there have been times when cancer was painful for me. When I first found Oscar the Osteosarcoma on my neck I had a small bump as well as the pain of a stiff or pulled muscle. Now I have previously written a post on the negligence of the doctor that visited me, who basically would not order an MRI as it was probably ‘just a stiff neck.’ Yeah whatever lady. Thanks for nothing. Then the bump grew to the point where I almost looked like a two-headed monster and the pain was terrible. I was articling at the time and I couldn’t even hold up my neck by the end of the day. 

Aside from being poked and prodded, and of course the countless cancer surgeries which were no walk in the park, the only other cancer pain I have experienced is with respect to my lungs and the insane lung episodes I have every so often. Just the other night I experienced another one of these episodes.

I have no idea what sparks these or causes them which is frustrating because I have no way to predict when they will occur or more importantly, how to control them. They just show up without warning. When they occur I am pretty much immobilized, I cannot move or breathe. I just take very shallow, short breaths. It literally feels like a truck ran over my chest and crushed every bone on the left side of my chest as well as collapsed my left lung. It’s excruciating pain on the left side while the right side remains unaffected. They usually last a couple of hours before the pain begins to subside. And lately they are lasting longer and longer. No one seems to know what exactly causes them. The only theory suggested is perhaps the tumor on the lining of the lung is growing. 

During these episodes, given that I cannot move or breathe, I think to myself that I will try meditatating the pain away. Not so easy to meditate when you cannot really breathe. Our breath is kinda crucial to meditative states. I also think of the philosophy where you imagine yourself well and send healing energy to the affected area. Yeah, also not genius in the midst of one of these spasms. So then my mind naturally wonders to that dark place. Where all I can think of is “holy shit this hurts.” “Please show me the jackass who thinks pain is an illusion controlled by our mind because I need to beat this person senselessly, till he feels the pain of course.” 

When I slowly begin to regain a touch of movement so that it doesn’t feel like all of my bones are shattered and I can take more shallow breaths than I could an hour ago, I leave my dark place and try to rest or hopefully fall asleep. Unfortunately these episodes last a very long time and take days before you feel real improvement. And the last two episodes seem to have left a lasting impact as they never really disappeared altogether. When I take deep breaths in I can still feel a soreness or pain in my left lung. But I will take this over having more frequent episodes, that’s for sure.

So there you have it, cancer can and does hurt. And it can be much worse than what I have experienced. And sometimes it doesn’t hurt. So ladies get your boobies checked, men get your junk checked too!  And seriously whoever tells you that the pain isn’t really there needs a good ass-kicking to set things straight. 

Till next time guys.

Health, love and getting through the night pain free.

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Date night.


xo

Three days down, seven more to go.

And the countdown is on.

Thought I would update you all on how I am doing during my whole brain radiation. I have had three days of frying my brain and seven more to go.

The actual procedure itself is painless. You don’t feel a thing and it lasts about a minute. However there’s this really weird smell of burnt plastic in the room when the radiation comes on. I thought I was going crazy but it turns out almost everyone comments on the smell. Kids think it smells like farts. 

Another peculiar thing is that you must keep your eyes open during the zapping. Of course I had to ask why, and I was told that it is to protect my lens. Cataracts could be an issue down the road. But they said that blinking was okay. Well, you know me, I have to defy the conventions. So literally I kept my eyes open the entire time without blinking when I found out this information on the second day of treatment. The girl said “wow, I have never seen someone go that long without blinking before, that’s impressive, but you know you can blink, right?” Yup, I do.

I kinda looked like this:
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On day one of radiation I had a bit of a headache and that was it. Naturally, I figured it couldn’t be that easy. Day two and three brought on more headaches and some nausea, which I absolutely hate. Just imagine that when I had major abdominal surgery where I underwent the removal of two organs (my uterus and right kidney) I refused the epidural as well as taking minimal amounts of pain medication just to avoid nausea as much as I could. I did the same thing for my neck surgery too. That time I had the pain management team come in and scold me about four times, saying I needed the pain meds. The nurses were all in awe of my high pain tolerance and the fact that I was hardly pushing the pain pump. One day I hadn’t pushed it once. This paints a nice picture of how much I hate nausea and not eating.

Fortunately I have been able to control the nausea with ginger and ginger gravol. However I must say that a ketogenic diet is very difficult to do while on radiation treatment. Just the thought of meat and fish and a high fat diet makes me sick right now. All I am craving is carbs: bread, pasta, crackers, you name it. Garrett had a croissant the other day and I thought I was going to die of carb envy. Watching them eat bread at dinner, I literally feel like yanking it from them and imagining how good it would taste. Visions of carbohydrates floating in my head. My mom, who is awesome, has made me some organic chicken soup, and I have been good with that. I am good with smoothies and green juices, but my appetite is definitely not normal and not as ketogenic-like as it should be. After the radiation is over I will go at that full force.

As for the headaches, they pretty much last all day. I have this really annoying pain on one side of my head and eye. I take Tylenol every so often.

Luckily though I met with the radiation oncologist and he said that given how I am managing things right now, that I should not need steroids. That is exciting! I may not be Hulk Sabrina after all. Although I think Bruce Banner turned into the Hulk due to radiation and a lot of anger. I have the radiation thing under my belt already and I am becoming quite enraged every time someone eats a breadstick, so who knows, She-Hulk may be on her way.

And then there’s the hair thing. So I should start losing it a couple of days after my last treatment. I know my hair doesn’t define me, although I do love it because it’s really pretty. I think the hardest part about losing it is that it now forces me to look at my reflection every day and see a sick person staring back. This is the most troubling part. For the past two years I have had an incurable cancer but I never once felt or looked sick. It is extremely difficult to look in the mirror at a bald head due to cancer treatments and not see yourself as ill. I do have my sassy wig which I will be getting styled on Saturday, however it is a subconscious feeling that I have to shake off.

As long as the radiation works (since sarcomas tend to be radiation resistant buggers, of course they do, since that would just be too easy) then everything else will slowly start falling into place. 

For now I am going to try and enjoy the gorgeous weather. Tomorrow will be day four.

Health, love, and counting down the days.
xo

Trying to make the best of it

Remember those times when you are getting ready for a big event and you are super excited, with butterflies in your stomach, and you just can’t sleep the night before? Well anticipating whole brain radiation is sorta like this only not in a good way. 

Tomorrow is my first treatment. 

Typically whole brain radiation treatment is done over the course of five days, but they are going to do it over 10 days for me, as smaller doses over a longer period helps to minimize adverse effects. I think I bugged them so much with all my questions that they were like “alright woman, we’ll do it over 10 days, just leave us alone already.”

Usual side effects during radiation are headaches, nausea (which I detest), fatigue,  brain swelling which will cause me to say or do weird things, and appetite changes. And then there are side effects post radiation as well. Not to mention the steroid side effects, which if all goes peachy, I might not have to be on any according to my radiation oncologist.

Now leading up to this big event, I went in on Friday for my planning CT scan as well as my mask. Yup, I get a mask out of the whole thing. Yay me!

The mask process is quite weird as they start off with this sheet of material with lots of holes in it so you can breathe when they smother it over your face and the water in it makes pliable. So then they contour your face to it while it hardens. Then they remove it and cut out two holes for your eyes and put it back on for proper fitting. The girl said to think of it as getting a facial. Perhaps if I were Jason or Freddy Krueger then it might be a really good facial. I’ve had better. Although the two girls making the mask were super nice and very friendly. Made the process easier. When I am all done, the mask is mine to keep. Was thinking it might be good to have a “trash the mask day” or perhaps it might be good as a Halloween costume. Always thinking ahead.

Here I am with my funky Jason mask . 
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Additionally due to the fact that radiation is super toxic and nasty, all of my hair will be falling out as well. Cancer is the gift that just keeps on giving.

So I went wig shopping! 

I tried on a few just to have fun with the whole thing. Not so sure how fun it will be when my hair begins to fall out in clumps, but I will manage.

I love my hair. When it’s clean it’s shiny, soft and nice. But I have to say some of these wigs felt better than my own locks. I was going to go funky with a new colour, but I might be wearing this thing for a while, so I opted for a more natural look. But I get to highlight, cut and style it still. So I won’t be revealing my new look just yet. In the meantime you can check these out so you can have a good laugh at my expense. 

Enjoy!

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Like I said, we just have to make the best of it. The more I psych myself up for this, the better it will be for me and hopefully the effectiveness of the treatment. I just need this to work.

I will let everyone know how the first session goes.

Health, love, and wigs.

Xo

Decisions have been made…and I can’t have regrets.

So after a very long and arduous debate with myself essentially, I have decided that I will undergo whole brain radiation. Yup, against my better judgement I am going to give them permission to fry my brain. What am I thinking?

This decision was not an easy one to make by any means, and I tried desperately to find another option. I reached out to many, had various medical professionals look into my case, and I even requested another MRI. Essentially, the verdict was more or less unanimous and the MRI (although they didn’t take pictures of the whole brain, just part of it for some very odd reason) did show slight progression on two lesions as well as some swelling.

There are pros and cons to whole brain radiation in this case, but what it really comes down to is that brain mets are unpredictable and can be quite aggressive in nature and deadly so the fact that even two have slightly grown is a good indicator that I cannot leave some of these guys behind. I need a clean sweep. The biggest concern is whether the radiation will actually work to get rid of all of them.

There are alternative therapies that I will need to stop during the radiation and two weeks after, but there are some things that I can do to both help protect my healthy cells while also making the tumours more sensitive to the radiation. 

Provided the radiation works, once the waiting period is over for supplements and alternative therapies, I will go super hard with trying to protect my healthy cells from mutations and radiation damage, and of course figure out how to control any disease elsewhere in the body. I have been intensely looking into German clinics at the moment. Apparently they have awesome spas in Germany too.

I will find out more tomorrow about the procedure, side effects during and after the radiation, and when and how long I will be put on steroids. Yes, I will be on roids people, which I am not looking forward to, but will most likely need them to control the brain swelling after they give it a nice dose of radiation. Look out, it’s Hulk Sabrina! 

Oh and at the request of my naturopath, I will be switching my diet a bit to a more ketogenic one. Adding tons of healthy fats, some protein, and essentially no carbohydrates (very, very little). I will still be having an insane amount of organic greens, however I am being asked to add some organic chicken and organic fish. I pleaded not to add meat (and remember this is coming from me, a girl who used to want to eat anything that moved, well okay maybe not anything), but I was shut down.  The reason behind this diet change is there has been some promising results on the ketogenic diet helping with malignant brain tumours in general. Essentially, you try to starve the cancer cells of sugar and force the body to fuel on fat (ketones) as opposed to carbs and glucose. Cancer cells seem to only survive on glucose, not ketones. I still will be eating primarily plant based foods, only way more healthy fats and the occasional addition of organic chicken, as I was already eating some fish. We’ll see how it goes.

That’s it for now folks, I will keep you posted.

I am going to have a relaxing evening with my hubby and rest my poor aching brain for a bit 🙂

Health, love and tough choices.

xo

Decisions, decisions. 

We all have decisions to make in life. Some are trivial and some are life-altering. 

I used to worry about what to wear in the morning or what I felt like eating, now I am worrying about how to stay alive. 

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A week ago my entire life came crashing down on me.  

I know many of you have been waiting eagerly to find out what is happening and how my most recent appointment was. Well for starters, I pleaded my case trying to recall some legal training, however unfortunately new evidence was presented that shocked the hell out of me. And yes, a good lawyer should not be surprised by new evidence, but this I couldn’t have prepared for. And who said I was a good lawyer anyway.

So I went in there all gung ho on gamma knife radiosurgery whereby targeted radiation is sent to the tumours while sparing normal cells. This is typically done on fewer metastases (in some cases they will do a few more) and the brain mets have to be on the small side. My mets are on the small side, however I figured the number might pose a problem, as the MRI picked up 10-12 lesions. But I was prepared with my counter argument stating that I would go in as many times as it took to get these things out, I didn’t care how many times I had to go in and get that mask screwed into my skull (yeah the procedure is a bit on the barbaric side). As long as I could get ‘er done!

To my surprise, I found out that the radiation oncologist physically counted 14 lesions, but the craziest part is that I was told there’s probably about 42 mets in there! 42, holy sh$t!! Essentially the specialized MRI they use for gamma knife will inevitably find more mets that could not be seen on my original MRI. So gamma knife radiosurgery would not be their recommendation for me. Their recommendation: whole brain radiation. Yup, that’s right, they want to fry my entire brain. I guess the logic is ‘go big or go home.’

This changed everything. I am basically being told that whole brain radiation, if it works (nothing is guaranteed, right) will be able to get all of the mets, even the microscopic ones not even visible yet. Basically whole brain radiation sterilizes the brain in a sense. The caveat being the side effects of frying your brain and damaging normal tissue and healthy cells in the process. Basically they are going to make me dumb. Not that I was a genius to begin with, but I like my brain just as it is. Cognitive decline is a side effect.

Apparently I am being told that at my age this will not be a problem. I still feel a little uneasy about it. It is my brain, afterall. 

Oh, and then there’s my favouritethe risk of  good old radiation, a secondary cancer. I guess as early as 4-5 years later, a new annoying tumor can show up in my brain,  or anywhere associated with the general area radiated. And let’s be serious, I have Li Fraumeni Syndrome, so I think we all know how that’s going to play out. But I don’t think they believe I will be around for that long, so they figure I won’t have to worry about that consequence materializing. My oncologist basically told me I should plan my funeral and get going on that bucket list. And I get that this might be a realistic approach and that everyone should prepare for their demise at some point; however I don’t care what anyone says, it is much easier to plan a will when you are healthy as opposed to when living with metastatic or terminal cancer. I will decide when I have those conversations with my loved ones. I mean don’t get me wrong, I love planning events, but my funeral is not one of them. Plus, the worst part is that I won’t even get to be there to see everyone and have some food after, that’s my favourite part.

Oh and you lose your hair. Guess I need to start going wig shopping. It does suck, especially when you are constantly being told how nice your hair is, but if I knew this would work and the cancer would never come back, I would rip each strand of hair off my head myself. Seriously.

To complicate matters even further, as if this isn’t bad enough, the main issue is that even though the brain mets may be able to be controlled, in order for them to stay that way, I need to deal with the issue of disease in the rest of my body, my lungs. Up until now I have not had any  conventional treatment, as per the recommendations given to me and the lack of evidence that anything would work. The complementary treatments I have been receiving in the interim, while perhaps not strong enough to stop Mildred altogether, have helped me get this far. Despite that these mets don’t even look typical, they are being classified as osteosarcoma mets. Mildred is a real beeyotch! And essentially they seem to have made their way from the lungs since I had active disease there (although very slow growing) for so long. I wasn’t even told it was a possibility that Mildred would ever travel to my brain when I was first diagnosed which is probably because most people don’t last this long. Well, screw you Mildred, I’m still here!

The average survival time with brain mets is 4 months and radiation can extend it to 9 months, and this is for patients that are in very bad shape to begin with, which the radiation oncologist doesn’t seem to think is the case for me. And then there are the patients who have been living past five years. It’s all a gamble. Like I said in another post, I don’t like math and I don’t like statistics.

As mentioned earlier, although the brain mets must be controlled, so does the rest of the body. Having said this, there are a few treatments I am considering, and I have also decided I need to go out of the country at this point. Yup, I need to hightail it out of here.

Anyway, now I am stuck with the decision of whether to get the whole brain radiation or get the gamna knife on what they see, which will leave some mets in there so then I will have to go back if nothing can control them. Or, if only the DCA would work! But that is still too early to tell. And I don’t know how comfortable I am with waiting. It’s one of those decisions that we just should not have to make in our lives ever. But some people do. I do. I wish it would come to me in a dream or something. That never happens to me.

This decision is making my brain hurt, literally.

What I can tell you is that no matter what, I am going at this full force.

For now I am going to decide on what tea to make myself.

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Heath, love, and making informed decisions.

xo

When it rains, it pours.

Nope, I am not referring to the lousy, dreary weather we have had recently. As I type this, the sun is sort of out, so clearly the weather is not the issue.

I am talking about those times when you feel like bad things keep happening, you just can’t seem to catch a break no matter what.

Well this is how cancer patients or those with ailing health tend to feel every time they visit with their oncologist or medical team. The kind of phrases that circulate in the patient’s mind after receiving repeated dismal news usually begin and end with that special four letter word. No, not crap or shit. You get the point.

This is how I feel today. This day deserves a giant WTF?!

Apparently Mildred has taken her cancer party to a whole other level. She’s decided to make life increasingly difficult for me and kicked things up a notch.  It appears as though the cancer has metastasized to my brain, at least that is what the most recent imaging suggests.

Next to being told that they will stop making size five shoes, having cancer go to my brain was the worst thing I could be told.

There are still many questions that remain unanswered and steps to be taken going forward. I am currently in the initial stage of processing the information. I can tell you that things do not look good when you have cancer in the brain, that’s pretty much a no brainer, so lame I know.  However being me and representing a  complete challenge to the entire medical community, I refuse to let numbers and statistics stand in my way. I was never a numbers girl to begin with. Come on, everyone knows that people who don’t like math end up in law school, duh! And plus how much cooler would I be if I could defy the odds and live with cancer in my brain for a long time, or have it go away completely which is statistically impossible. So cool, right?

Now do not think for a second that I am not scared like hell because I absolutely am. I had my meltdown earlier and I am sure there will be plenty more where those came from. But I plan to fight like hell too. That’s what we cancer people do.

It’s not like I am Albert Einstein or Stephen Hawking, but the one thing I feared was to have cancer invade my brain or central nervous system. My cognitive thinking, thought processes, speech, motor skills, and especially my writing. Those are all off limits. There will be a lot of angry people out there if I can no longer write this blog. So despite being upset, scared, sad, confused and totally pissed off, I am also going to fight back. Oh it’s go time!

I have defied odds already, so what’s stopping me now, a little brain cancer, screw you I say!

Well at least they still make size five shoes, right? Perhaps a little leather pick me up is in order. Nothing says “things will be fine” like some new fabulous footwear. Shoe goals people.

Another perfect time to reach into my purse and pull out the good old cancer card. It was getting a little dusty.

In the meantime, now that the rain has stopped, I will wait for my rainbow.

Health, love and rainy days.

xo

Fashion for a Cause

What a night! 

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Working it.

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As many of you know, Wednesday was my big runway debut, and let me tell you, it was fantabulous!

Let’s begin with the fact that Civello salon graciously donated their services of hair, makeup and manicures for all the models. I know, right?! They were sweethearts right upon entering the building. Kudos to the team for doing such a wonderful job beauytifying all of us. 

The only crinkle was the weather didn’t really cooperate, so I had to put my hood on which kinda flattened the hair a bit. But thankfully one of the models in the show was kind enough to drive a couple of us down so we didn’t end up looking like we were auditioning for a horror film. And luckily the fab hair and makeup team were on site with us at Holts to ensure there were no last minute hair or makeup emergencies. That’s just not cool.

Upon entering Holt Renfrew on Bloor Street which is ginormous by the way, we were treated like royalty! We even got to say “we’re the models for the fashion show tonight.” We were brought up to our private lounge stocked with cocktails, beverages and my favourite touch, pink champagne. How awesome is that? Pretty frickin awesome. We mingled with the other models who were such a lovely, funny, inspiring, and all around fantastic bunch. I was so happy to be surrounded by all of them. Good times, good times.

We were all kind of nervous for dress rehearsal. And the runway was looooong! Not to mention I was the first one up and was representing Wellspring as the Well Dressed For Spring Model Search winner, so no pressure at all. I just reminded myself as I did on my wedding, not to sprint down the aisle. Then we ventured back to our lounge to hang some more, get dressed, have final touch ups, and at 7:15 it was showtime!

Before I walked out, the video that I shot in the #ElleCanadaCloset was played. It was incredibly fun to shoot. Noreen Flanagan, EIC of Elle Canada is the most wonderful lady in the fashion industry. I can’t say enough good things about her. Truly I cannot. But here are a few: Beautiful, intelligent, witty, extremely nice, kind and super down to Earth. Nothing like Meryl Streep’s character in The Devil Wears Prada.
Have a look:

And then the catwalk officially began. I strutted out and worked that runway. I think I was more nervous doing the rehearsal in front of empty seats than the real thing. Perhaps it was the pink champagne. The vibe from the audience was incredible. So supportive and uplifting. I grabbed myself a standing ovation, which was dreamy, and decided to dance my way back. I just had a ball with it.

How could I not, I had an entire posse with me. 18 people representing, despite the weather or any other obstacle, truly amazing! Which brings me to the Oscar speech part of the blog, a HUGE thank you to everyone that was there on my behalf. Thank you guys endlessly for buying tickets and supporting me on my special night, you guys are truly my biggest fans. I love all of you!

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Me with my handsome hubby after the show!

I sincerely hope the night was as fun for you as it was for me. Okay, so obviously it was way more fun for me. It felt like wedding déjà vu, being in the spotlight with so many pictures being taken and everyone wanting a piece of me. It’s tough, I know. 

All the models were stunning and did a terrific job. Not a dry eye in the audience, I am sure. It was definitely an emotionally charged evening. Everyone owned the runway that night. True role models. And it was such an important cause. Wellspring is a truly remarkable organization. They deserve the spotlight. I continue to use their services each week. They call me their centerfold girl at the moment. And I have met some very supportive and lovely individuals who I look forward to seeing each and every week. Bravo Wellspring for helping cancer patients and their families. 

Oh and did I mention that there was a real model amongst us, like the kind that actually walks the runway and does professional photo shoots as a career. I was happy to befriend Elisaveta Bulokova, a Canadian fashion model with a truly inspiring story. We are actually Osteosarcoma sisters, so naturally we had tons to chat about behind the scenes. We will definitely be keeping in touch!

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Picture perfect model moment!

I should also note that our Emcee for the evening, TSN Anchor Gurdeep Ahluwalia was a riot. As was the lovely commentator Lisa Tant, the VP of Exclusive Services for Holt Renfrew. They did a wonderful job working with the talent Wednesday night.

And how could I forget the private shopping event that took place after the fashion show. Each ticketholder was given a $100 gift card to be used at Holts. Did someone say shopping, sign me up! There was a DJ as well . The place was lit! 

Spending money for a great cause while dancing is always a good idea. Life lesson people, write this down.

The evening was super fun and extremely memorable. Thank you Wellspring, Christina Smith, Janice Fukakusa, Susan Chung, all of the dedicated volunteers, Noreen Flanagan and Elle Canada, the entire Pink Tartan crew, Holt Renfrew, Marlo Sutton (my very own personal shopper for the event and styling guru), and all of the overwhelmingly generous sponsors and contributors for  making this happen.

And last but not least, everyone received swag bags at the end of the event, and no I did not win the fantabulous shopping spree at Holts which I totally wanted to win, but Pink Tartan let me keep the dress I wore. So amazing! Love this store. Thank you sooooooo much Kimberley Newport-Mimran. 

I think I covered just about everything. But what I can’t convey is the adrenaline and feeling of being a part of this event and all of the festivities leading up to the big soirée. It’s inexplicable. What a night indeed!

Health, love, and catwalks.
xo

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Look at these studs!

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The parents and in laws looking smashing!

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Awesome Emcee!

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Pretty ladies.

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My proudest supporters.