Saturday, June 16, 2012

The purpose of this all...

I’ve been thinking more about this blog- what is the purpose? I have been cancer-free nearly 5 years, but I’m still glued to all the cancer blogs. Back when I was diagnosed, social media was not anywhere near where it is now…. Facebook was existent, but still growing. Blogs- I didn’t even know what a blog was. Twitter wasn’t even started, that I know of, and if it was, wasn’t popular yet.  Now, every time I google Hodgkin’s, I’m given thousands of websites and blogs. While going through treatment, I wanted so badly to talk to another young person that had dealt with cancer. I wasn’t even picky, it didn’t have to be Hodgkin’s that they had, I’d take anything. At JOHA (Joliet Oncology & Hematology), I was the YOUNGEST person there, and I was 22- not even that young. I had nobody to relate to. Nobody could answer my questions except for the nurses and docs…who I loved and trusted, but they’re on the other end. “Hunny, this won’t hurt, and there is no taste or smell”, “Drink some Gatorade, it’ll make you feel better”, “Get lots of rest”. To me, those were all so generic. They didn’t really know what it felt like, and I was entering a world unknown. Now that social media is huge, it’s not hard to find someone’s story documented through various blogs and photos. In a way, it makes me regret not documenting any of my treatment. That is part of the reason I started this blog 3 years ago, to try and remember. Every time I say to Chris, oh, I wish I would have taken photos during treatment or just a photo of me bald, or kept a journal, or blogged?!? Chris always reminds me that during that time, I did not want to document anything; I didn’t want to remember what I was going through. It’s hard for me to believe that I once said that, as I’m big on photography- documenting life, and now I am big on blogging. I guess then though, I just wanted to get that year over with and move on. To this day, I still struggle to remember details of that year. I don’t know if my brain purposely blocks out certain things, or if chemo-brain made me forgetful, or the plethora of drugs I was on just totally fogged my memory. I have no idea, but for some crazy reason that I cannot really understand myself, I kind of want to remember that time. I keep reading all my little hodge blogs that I follow, and those help me remember. I’m like whoa, I remember that happening to me, and how crazy that our stories are so similar in many ways. It got me to thinking that in my own little tiny way, maybe I could help someone else out there who is going through Hodgkin’s treatment- and I know a lot has probably changed since 2007, but hey, you never know. I’m a HUGE advocate of The SAMFund, as you probably know, and the feeling I get from helping out survivors is absolutely amazing. But, I want to help more. I want to help everyone, survivors, & patients. So this is kind of crazy, but I thought I’d start sharing little cancer tips. I’m not giving medical advice by any means… just some things that I wish I would have known before starting my treatment- and as most survivors know, you’re just thrown into treatment…so here goes.

Some chemo tips, I wish someone would have told me…

·         If you have the option, get a port! While doing chemo, or anything cancer, you will be pricked & prodded everywhere possible. Getting blood drawn is a weekly, if not daily adventure. When I first had my port installed…haha….It freaked me out. I have this giant thing implanted in my  shoulder/chest area, and you’re going to stick WHAT in it?? Actually, for me, it was much less painful then getting IV’s in the arm/hand. It’s also easier to administer chemo through. The needle is big, scary looking, and hook shaped, sort of. It does have a butterfly clamp on it, but I promise, once you’ve had the first injection, you won’t be scared of the second. I used the freezy spray the first time, but never needed it again. It’s easy. The only bad thing about the port is that you can feel it inside of you, especially when you lay on your side, but really, had no other issues with it, other than psychological, post treatment, so I had it removed….

·         Eat. Eat before, during, and after chemo. Don’t pig out, but just make sure you’re eating a healthy meal. I went to my first appointment on a totally empty stomach. Nobody told me what to do, so naturally, I didn’t sleep that night before (out of fear that I would die the next day), and I certainly didn’t eat, because I kept thinking that I would be vomiting my guts out like the people do in Lifetime movies. Well, that may be true for some people, chemo does take a toll, but for my ABVD, it didn’t seem to make me so nauseous that I would puke during chemo, in fact, that never happened. I did feel nauseous though, constantly actually, but if you eat, it helps that go away. My very first chemo was hard, the nurse yelled at me for not eating, I was like hey lady, you know this didn’t come with instructions… It happened to be 3 days before Christmas, so there were plenty of holiday cookies. They actually told me to eat cookies for breakfast, so I managed to have a couple. I got home from my first chemo and slept for hours. I ate mashed potatoes once that day, and that was it. The nausea didn’t go away. I learned throughout chemo, that if you ate properly, and had good snacks throughout the day, it really helped with the nausea. My doc gave me endless refills of Compazine too, to help combat the nausea, but that only helped me in the beginning. I learned that I had to manage it on my own. Just make sure to eat!

·         METAL MOUTH. One of the symptoms that I dealt with on an hourly basis. I had the taste of metal in my mouth. Like I was sucking on pennies and dimes. Nasty. For me, the silly little candies that were out at the chemo center didn’t help. It just tasted like metal candy, yuck. I needed something more powerful. Now, eating for me did not get rid of the taste either. Eating certain things actually made me sick, because the taste was altered because of chemo and the metal taste. I mostly stuck to grape juice. Don’t know why that worked, but it was sharp enough to help out with the taste. Unfortunately though, nothing else really helped. This I guess is just more of a warning. Do not indulge in your favorite foods during chemo, because you will only end up hating them post chemo. There are certain foods I will not touch today only because I can remember that distinct taste they had during chemo, and it makes me sick. Will not touch…. So you know, be sure not to ear pirogi’s during treatment. Wouldn’t want to live without those…

·         Old man yellow fingers?? Yeh, I have no advice for that. My extremities all turned this weird golden yellow color. I looked like an alien. It’s a side effect of the ABVD, and you just have to get used to it. My fingers went back to their natural color eventually, no biggie compared to metal mouth.

·         Some tidbits to help you get through that 5 hour treatment….
·         Stock up on liquids- they want you to pee throughout treatment and flush out the poison, so make sure to bring water. I love water, but it doesn’t mask anything, so I would also stock up on grape juice, which JOHA thankfully had stocked in the chemo community fridge.

·         Bring magazines. JOHA had: WEB MD & various parenting magazines available. First, WEB MD only promotes my inner-hypochondriac, so no way am I reading that while battling cancer. And parenting?!?!? I was 22 going on 23. Bring the fun stuff, Cosmo, Glamour, Wired, People… otherwise bring a sleeping pill, jk. Also bring your iPad!! They didn’t have those back in my day, so I would bring my iPod. It was one of the first iPods to have a color screen, and it even had solitaire!! That was my life-saver.

·         Bring a pillow, or better yet, bring one of those airplane neck pillows. Chemo chairs suck, or at least mine did. Not soo comfortable, especially after 4 hours of sitting.

·         Have your mom or boyfriend or dad or whoever is joining you pick up lunch. My mom would always run out and pick up lunch for us during treatment. You will get hungry, theses a[appointments are at least 4 hours long….

·         Bring shoes that you can take off, and wear cute socks. I full on made myself at home. Um, yeh, I’ll take 2 warmed up blankets, and yes, I’m going to put my feet up and take my shoes off. I may even take my wig off. Get comfortable, I know it’s hard because you’re in a room with 30 other cancer patients, but really, who’s judging?

·         I’ve heard that this is not done as often anymore, but, if you’re getting the dreaded Nuelasta shot (the yucky one that promotes white blood cell growth), take your doc up on the pain pills. I had to get the shot every other week, the very next day after chemo. It sucked, I hated it. We tried vicodin, darvocet, and even good old ibuprofen. It’s the most painful thing I’ve experienced, minus fracturing my vertebrae, so have a good game-pain-plan. Don’t be scared to ask your doc for something to help out, I’m sure he’ll offer anyway. Just make sure you eat before, during, and of course, after taking pain pills. They take a toll on your stomach. They made me even more nauseous on top of my constant chemo nausea.

That’s all for now….. I will have some more tips later J Enjoy your weekend,


Saturday, June 9, 2012

Suds for The SAMFund: Amazing night

So, as usual, it's been a bit since my last post... but have a TON to share!

The SAMFund hosted their 3rd annual fundraiser in Chicago this past week. I was on the planning committee with some crazy talented and amazing people. This year, we did something a little different than we have in the past- we did not do the "cornhole", rather, went to Haymarket Brewery and hosted both a silent and a live auction. The committee and I gathered many different auction items, and as a side note, I have to thank my wonderful donors who donated to the auction. Shout out to:

Tracy Sieban, George Steimer, Brendan Perrin, Jen Baxter, Jan Baxter, Jen & Jake Moreland, Adam Koch, Michael Lombombard, Emily Costigan, Johnny Rivera, Amber Sievers, and Steve Sievers, who donated his live auction-ing talents! Thank you to everyone who was able to contribute to our silent auction, live auction, & raffle.

So, back to the night. As usual, I was waiting in excitement for the past couple of nights. Funny, I was talking with one of the board members, and all around amazing woman, Sharon Karsten, about how I started my blog! It was the night of our very first fundraiser, back in 2009. I love that to this day, our efforts have continued, and we've gotten even bigger. It's always a blast planning for the events, but once the event starts, you get this "high", and it's like nothing else. I got to Haymarket (a little late, thanks Lakeshore traffic), and was a bit nervous, as usual, because I was going to go up, on stage, and share my story. I'm not big on being center of attention, I actually will do all to avoid it. In the past, I usually will prepare my little speech, but every time I've gotten on stage, that little prepared speech goes out the window. This year I realized that I don't have to practice, how could I screw up my own story? So, the night starts out, and I get to see all my committee members. I then get to see Sam, who I don't get to see too often because she lives in Boston, so I was really happy to see her. I mean, she changed my life.... so it's always a pleasure getting to hang out with her in person. We had a big private room in back, which suddenly seemed so small. It seemed small because we had SO MANY PEOPLE come out for the event, which touched my heart. You had to squeeze and maneuver your way through the crowd, and I was loving every minute of it. Our silent auction was doing well, I started selling raffle tickets. It was great. It was about time for me to get up on stage, and my entire body was shaking. It wasn't that I didn't want to go up, it's just scary because everyone is looking at you. Sam got up and introduced our committee and thanked them. I then went up to share my story. Suddenly, as usual, all my nervousness went out the window, and I shared my story. It is always tough- I'm not shy about it, I'm actually proud of it, but it always gets a little emotional. I didn't want to start crying in front of 100+ people, but I made it through, and each time I get up there to share my story, I look in the crowd's eyes, and see the connection. They know exactly what their money and donations are going towards, and I would share it a million more times in front on a million more people if I had to. I guess it makes me a little selfish, because after sharing my story, I get this great feeling. I know that it helps impact people. It helps people understand. It helps other cancer survivors out there, like me, get one step closer to a grant from The SAMFund.

We then decided, impromptu, to do a live auction. Lyndsae, an amazing Hodgkin's Lymphoma survivor and past grant recipient, was donating a private yoga lesson. Even more amazing, she used her grant to help fund her training to become a yoga certified instructor, and also specializes in yoga for cancer patients. Who wouldn't want that private lesson? Steve, my father in law, was volunteered by me to get up and be our live auctioneer. He was wonderful. We ended up raising $400 for that yoga lesson, which is just incredible. We couldn't have done it without you Steve... Lyndsae was so touched, and I was standing up on the stage next to her and Sam while Steve was auctioning it off, and you could just feel the great energy in the room. Smiles all around. We then announced our raffle winners and silent auction winners, and I was starting to get sad because I knew the night was nearing its end.

People were coming up to me congratulating me on everything, telling me how touched they were with my story. Everyone was hugging me, and I met the most wonderful people. I had so much fun, and even though I'm an old lady when it comes to my sleep- meaning in bed by 10pm.... I refused to leave that event until everyone else was gone. It was hard saying bye to everyone, especially Sam! As the crowd filtered out, I knew it was time to go. Chris and I walked to the car, and I was just glowing with excitement. It's bittersweet saying goodbye to everyone, but I was waiting in anticipation to see how much money we raised.

On a HUGE side note, I wanted to thank my husband, Chris. Chris was amazing. Besides helping me gather auction items, Chris did every and anything he could during the night. He sold raffle tickets, let us borrow his father, left work in the suburbs extra early just to come out, photographed the event. He didn't even eat dinner that night because he was mingling around with me all night. I know that I could not have achieved what I have so far in my life if it wasn't for Chris. His passion for The SAMFund runs as deep as mine, and him & I will always hold a special place in our hearts for The SAMFund.

I really can't thank everyone enough for all that they have contributed. So, thank you again. I love you all. Because of your donations, we were able to blow our last fundraisers total amount raised out of the water. We raise.........

a bit over $17,000!

Simply. Amazing. Our grant cycle just opened up as well, and in the first 5 hours of it being open, we had 50 applications. 50! And there are still 5 more weeks to go... Thank you again, I cannot wait to see you all next year. I'd actually like to see you all earlier, so call me and we'll get lunch. Love you all.