2014

Happy New Years! Maybe I should make it my resolution to write on my blog more!

I get really sentimental every year on the first of January. I always remember my husband and I walking into Target January 1, 2010 and saying "okay baby it's 2010, you can come out now!". I had no idea she would take it so literally and decide to be born 9 days later.

I used to have a really hard time with what happened when she was born. Actually, her birth was awesome. Besides her being 7 weeks early, I was only in labor for 4 hours and pushed for about 15 minutes and she was born. I didn't even have time for an epidural.

But I am such a planner and she really threw off all my plans. And it was REALLY hard to not take my tiny little baby home with me when I was discharged that Tuesday. And that's where my hatred of the hospital floor came from. Looking at the stupid ugly tile, every single day.

This year I have other things to remember that happened to me in January. On this date last year it was my 2nd day in the hospital. It was Sunday and the resident told me that I might have a pulmonary embolism. I was coughing my brains out and nothing was giving me any relief, certainly not the 5 antibiotics that were dripping into me via IV. Every 4 hours the tech would come in and I would pray that my temperature was down and my heart rate was down and neither were. It was really terrible.

Cancer really tried to kick my ass last January. 2 chemos, 2 hospitalizations (5 total days), 2 CT scans, 2 bags of someone elses blood and an EKG. But this January is mine. I am doing what everyone does when they are victorious. I am going to Disney World!

We don't give Mackenzie a lot for Christmas usually. We usually have a pretty decent sized birthday party for her (some might think its a little too much and I don't care). We are celebrating her LIFE! How could a party be too much?! And I got to thinking a couple weeks ago that maybe we got her too much for her birthday this year. A week after her birthday we are going to Disney (SHE DOESN'T KNOW YET SO PLEASE DON'T TELL HER!!!) and we are giving her little trinkets while we are there to make it more magical. But then I thought- who deserves this more than this kid?

I'm so excited for this year. Besides surgery (probably late February) and daily tamoxifen I am trying really hard not to let cancer in too much this year. I read a lot of blogs about women who are currently going through it and it's always hard to read. Almost like survivors guilt. I don't want to stop supporting them but maybe I need to just read them once a month or so. 

So far 30 has been good to me! My goals for this year is to be healthier, spend more time enjoying friends and family and saying yes more. Hopefully I'll be successful! 

Another cancerversary

Ugh I'm so upset with myself that its been 2 months since I last updated. I have a few saved drafts that I started and never published. I don't know why I never publish them. Usually I write them then want to look over them again later and then I forget.

Anyway, today is another cancerversary for me. Its the day that I shaved my head a year ago.

Losing my hair was one of the scariest things about doing chemo for me. Especially after I made it through my first chemo pretty well. I think everyone with cancer goes through this short period of thinking that they'll be the ONLY one that doesn't loose their hair. But I remember waking up the Wednesday before I shaved my head pulling out clumps of hair. Even kids at Mackenzie's daycare noticed.

December 1, 2012 before head shaving. Picture by Christy Jewell Photography

I always identified as a red head and I didn't know how to be anything but that. I was glad that I was able to make it through that day without tears and to realize that I am me and it doesn't matter what hair color I have. That being said, I HATE my hair right now. I don't even know whats going on with it. I wet it and brush it in the morning and then thats it. I don't really think about it the rest of the day. I miss long hair a lot. I miss brushing it off my shoulders or putting it in a pony tail. We have all these pictures around the house and I feel like that's not me anymore. Its not good or bad. It is what it is. But I miss it. I know its growing back (very slowly it seems) but I just wish like once you got the all clear you just got your hair back! Fairs fair!

I've been doing all right mentally lately. I'm sure people think once you hear the words remission it all just goes away. It seems that it is almost harder to deal with after you hear you are in remission, for me at least. I don't have the adrenaline pumping through my veins anymore and now I have to really feel every emotion I was running over last year. I had an appointment the end of October with the nurse practitioner about "survivorship". We went over everything that happened from the day the tumor was found until I finished radiation and talked about future. It was a good appointment. I had a lot of questions I was afraid to ask answered to my satisfaction. I got a paper that has everything in it that I can give to my future doctors which will be so helpful to me.

We also got our rent letter for our one little frozen egg. I immediately broke into tears. I have such a hard time with that little egg. I am dying to see if it would become a baby. But its an expensive experiment. Not to mention I would need a carrier for our little baby. Its upsetting because its all so expensive and I feel like they just take advantage for people who are so vulnerable. But that little egg is our very last hope. So if in 1 year and 9 months we can't get pregnant on our own that little egg is our only chance. Its a lot of pressure for a little egg. On the other hand, we might get pregnant right away and not need that little egg. But I'm glad its there. As my nurse practitioner keeps reminding me, its not the quantity its the quality. So I'm choosing to believe we have a very strong little egg. I mean it is part of me right??

Oh and how could I forget. Last month I turned THIRTY!! I am loving it. Its weird to say still but anytime someone says "29 again" I always say "nope, I'm 30!". I earned this age! Plus 30 is going to be an age that I don't have cancer so I'm really happy about that. 28 & 29 are always going to be associated with cancer so 30 and 2014 are going to be cancer free!! I'm hoping that I will be writing more often. It really is therapeutic for me to write down how I feel still. Thanks again for sticking by me this last year!!

Breast Cancer Awareness Month

I wrote this post last year  but didn't post it because I didn't want to scare anyone off. But these are my true feelings of "breast cancer awareness month".

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I have a love/hate relationship with this concept. First I love it because it obviously brings awareness to a cause that is personal to me. I hate it because I feel like people use it to exploit people for their time and money.

The concept of supporting breast cancer awareness is great. Give money for research so people in the future won't have to deal with this terrible disease. I'm totally for that. I hope Mackenzie NEVER EVER EVER has to go through this. Not at 18, 28, 38, 48, 58, 68, 78, 88, 98 or 108. I hope by the time she is old enough to know what breast cancer is there is a cure. There are people that are working so hard to fight this cancer (click here to read about an awesome clinical trial for a breast cancer VACCINE!!) and all cancers, to know why cancer happens to certain people and why it doesn't. But they need to be fighting and working harder, and they need a lot more money.

That's where the hate part comes in. I hate to see signs that say "Buy this ($50) shirt and 5% of the cost will be donated to Susan G Komen for the Cure (or any other charity). Okay so 5% of $50 is $2.50. Of that $2.50 about 20 percent actually goes to cancer research so now that $50 you spent is $.50 for cancer research. More of that $2.50 will go to administrative costs and fund raising expenses. I know its not all Susan G Komen's fault either (or any other charity). The company that wants you to buy the shirt puts that there to make customers feel better about buying that shirt they don't really need because money is going to charity.

I'm actually really lucky to have the cancer I have have had the cancer I HAD. The most common type of the most common cancer. Breast cancer gets an entire month of pink ribbons and walks and awareness. Imagine being Kris Carr and having epithelioid hemangioendothelioma (EHE link to reference), a vascular cancer in the lining of the blood vessels in her liver and lungs so rare that only 0.01 percent of the cancer population has it (info from wikipedia via link above). She doesn't have support groups or walks to raise money. How terrifying.

October has been a tough month for me. Its when I've felt like I've had breast cancer. So its been hard to see so much pink every where with promises of donating however much money to cure breast cancer. Things like sending in yogurt lids in order for Yoplait to donate is absurd to me. We had a drive for this at work once which was a great and tough effort. Do you know how hard it is to get people to remember to save their lids, put their lids in the right place then round them all up and send them in? Why can't Yoplait just donate the $2.5 million they promise in the beginning without people jumping through hoops?

When you walk through stores and they have their displays with pink ribbons every where and you are in active treatment (or a survivor) you are hyper sensitive to whats going on. Part of me thinks that I should get massive discounts because I have HAD breast cancer and its breast cancer awareness month.

I'm SO aware of breast cancer. And people who have been effected by breast cancer (or any other type of cancer) don't need a month to be aware of their cancer. I get that its a tool to do massive fund raising. But I don't agree in the way its happening. We don't need cups and hats and car magnets and towels with pink ribbons. Because that money doesn't really go where it should be going. Donating that $50 directly to Susan G Komen or the American Cancer Society or the National Breast Cancer Foundation or to Stand Up 2 Cancer makes sure that those charities are getting the money that you want to go towards breast cancer. Of course, if you want the hat, car magnet, cup, ect then by all means. Just know that the money isn't always going where you think or want it to go.

Lastly, things like these pictures make me really angry. People use different ailments to become advantageous and to make themselves more popular. Believe it or not, some people thrive on other peoples problems.

Because if 60+ people don't like your Instagram picture then what? Cancer won't get cured? This is serious to me. This is my life, my future, my daughters life and future and my moms life and future. Its infuriating to see it being tossed around so someone can make a profit. I will continue to wear my pink shirts, my pink jacket and carry my pink binder. I'm excited to help people find and use the resources available to them (seriously, google free stuff for cancer patients).

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Even though I was in a totally different place last year, it remains the same. What we need is MONEY for research. Because obviously early detection doesn't work for everyone. What about those of us (the raising number of women or men) who are HALF the recommended age for a mammogram? Those women who have had breast exams EVERY year? Those women whose cancer isn't detected until its stage III? Those women aren't benefiting from the $1 from every cup/shirt/hat sold. Those women need REAL money to fund REAL research by REAL doctors who REALLY want to find a cure. 

If you ever need a charity to donate to, especially on my behalf, please make it a research based charity (Stand Up To Cancer) or a charity that helps women FOR free during their fight (The III B's or Fighting Fancy). Because those are the ones that are going to make a real difference to someone. 

I'm not knocking early detection. It caught my moms cancer early twice. But it's not the only thing that's going to stop cancer. 

1 year after surgery

I'm having a hard time believing that it has been an entire year since I was in surgery. When I finally realized the date and looked at the time it was about 2:30 and I was thinking- wow 1 year ago they were just really getting started. And at this time I was just starting to wake up from anesthesia.

This anniversary has been even harder on me than my "cancerversary" because it sets up all the rest of the anniversaries I have to hit in the next couple months. Before surgery everyone was thinking I would have stage I cancer and maybe have to do chemo. After surgery it all turned out so much worse that I ever could have imagined. I remember the nurse in pre-op asking me if I took some meds before I got there to calm me down because I was so calm before surgery. I didn't but I knew I was calm because I just needed to get the cancer out of me.

I struggle every day still with why this is happening to me. I'm not sure if everyone goes through this when they get a life threatening disease or go through a life threatening experience but its one of the hardest parts of dealing with it. I have so much anger to deal with that I'm not sure will ever go away and I hate it. I am so angry about what happened to me but I also get so angry every time I hear about someone else my age, or younger, who has to go through this.

I don't have cancer anymore but I still have to deal with the after effects of it. Every single day. I have to see all the scars that I have. From my port, my drains, my mastectomy. I have to take a pill every single day before I go to bed. I've never regretted or second guessed myself for having a bilateral mastectomy. I think its one of the best decisions I've made in my life. But I hate that I ever had to consider it.

The next couple months are going to be filled with a lot of appointments. I have a 6 month check up next week, plastic surgeon check up in November/December and then surgery in January, surgeon yearly check up in March and radiation oncologist check up in May. Luckily, if you can believe it, those are spaced out! Cancer doctors talk a lot about patients which is a good thing!

It was really nice to be able to go on vacation and not have to think about having surgery! That made this years vacation much more relaxing! I'll blog about vacation in the next couple of days. And by Saturday we should have everything mailed out from the fundraiser! (I know the fundraiser was a month ago but I kept the online fundraiser going for a couple extra weeks and then had to wait for the check). I'm so excited to share the totals with you soon!

Happy September!

I can't tell you all how incredibly thankful I am to see exactly how much money we raised. I kept postponing taking the online website down because everytime I would put something on facebook about it I would get more donations. So I thought, if people want to keep donating I'll let them!! All in all we raised over $3,000 to split between the 2 charities! I'm excited to send the money when I get the check from GoFundMe.

We were cleaning tonight because we are going to the beach and have to have a clean house for our house watcher (Thanks Laurie!) and I found a couple things from the past year and I got so sick to my stomach. I found the information from when I had my port placed and just to see the picture of the port and how they used it. I can't believe I had that thing in my for so long! I found my surgery discharge paperwork. Its been almost an entire year since my surgery. I kept the surgery paperwork but definitely tossed the port stuff. Its so gross!

I CANNOT wait to go to the beach this year. I need it this year even more than I did last year. This year I don't have to go to the beach knowing I'll soon have to face my WORST fears in life. This year I get to go knowing that all that is behind me and I can truly enjoy myself and relax. I get to enjoy those 7 days knowing that I kicked cancers ass and I have a lot to show for it.

I still sometimes talk/think about what happened thinking that it happened to someone else. How did all that happen to me? Everyday I still wish it never happened. I could have lived my whole life not knowing what any of that felt like. I can't always put a happy spin on it either. But I am kind of enjoying my role as the "expert". I really enjoy people asking me about cancer and sharing my experience. I really feel I have a lot to share with people who are going through this awful experience.

Today is September 1st and I decided that today is the day I start tamoxifen. I'm a little nervous because I don't know exactly how this drug will effect me and this will be the next 5-10 years of my life. I was going to start July 1st and August 1st but obviously that didn't happen. I just felt like my body needed a break from all these treatments. But now I'm ready to start getting this last piece over with. Plus if its going to keep stupid cancer from trying to grow again then I'm all for it!

And also this is the hair I'm dealing with. I HATE it so much. Look at the stupid little pieces on the sides in the picture on the right. What is even happening there?? It's so much harder to manage than super long hair. I'm not sure if I should cut it or just let it continue growing. I don't know whats happening. I'm excited that its growing. I'm not really excited that its still so dark. But I guess hair is hair and if I continue to hate it I can always dye it. Although I love that its like baby hair and hasn't been touched by a product or heat yet.

The Fundraiser!!!

The fundraiser felt just like my wedding day. So much prep and it goes by in a whirlwind that I barely remember. I can see snippets of things that happened but I couldn't tell you the order of those snippets. But what I can say is that the fundraiser was AWESOME! We had raffle prizes, a bounce house and tons of food including a bake sale. So far (I say so far because there is still time to donate online {HERE}) we have raised over $2400 between the 2 charities and a little over $200 for Stand Up To Cancer. I was seriously hoping that we would raise like $500 to give to the 2 charities.

Setting up the night before

When I woke up yesterday it was a little overcast and when I was driving to pick up my friend Kelly to get breakfast before we finished setting up for the fundraiser it started to rain. And I just broke into a hysterical laugh. OF COURSE its raining! But, as I was reminded, its better that it was raining in the morning before the event than during the event. And luckily the sun came out soon after that. I don't know what we would have done for all the kids if they couldn't go on the bounce house!!

The more I think of different things that happened during the fundraiser the happier I get. It was just a fun and happy day. My chemo friend came and my make up class friend came and the founder of The III B's Foundation surprised me by coming! It was so amazing that she showed up!!

Yes I did wear a tiara that said SURVIVOR on it! 

I am really at a loss for words about the whole event. It was pretty overwhelming. I HATE HATE HATE that I even have to know about these 2 charities from my personal experience but I am SO grateful that they are there for support. And that everyone was there to support me. People that I haven't seen in years came. People I have never met came. And I appreciated every single person. Because not only did they get to learn about my story but they got to learn about these 2 charities and how they help people every. single. day.

Awesome balloon pink ribbon that Kelly made!!

I'm not sure if this is going to be an annual event yet or not but I'm leaning towards yes. We talked a little bit yesterday about making it in October so we could find more pink ribbon stuff but I like that it is in August (hopefully next year it will be in July). I want to change July 23rd from the worst day of my life to a day that is celebrated by doing something for other people. I feel like I have to use this evil thing against itself and hopefully no one else will have to go through this.

Info about charities and raffle prizes

I can't thank my friends and family enough for all their help bringing this even together! Countless hours planning, creating, shopping, putting ideas together and setting up Friday night. I can't even begin to put into words how much you all have meant to me the last 13 months. I know I've said it many times, but I have to say it again. I am was the luckiest cancer patient in the world.

I don't have cancer

Its kind of weird to think that I don't have cancer anymore. Not that I miss it. I don't. But I'm not totally used to being in remission yet. The only thing that kind of bothers me is my hair still. It looks like I just wanted to have short hair. I don't. I have never wanted short hair. My favorite thing about me was my long red hair. And now its short and brown. But I want people to know why its short. I went through a lot and I earned the little hair I have on my head. But I also don't want to have to wear a survivor badge everyday either. 

I'm getting anxious about this fundraiser!! I'm really excited too. Just thinking that I can give enough money so someone could have 1 Fighting Fancy bag and 1 IIIB's basket would be amazing. I can't wait to see how much money we raise for this! Again if you'd like to donate you can donate {HERE}. All the money raised will go to Fighting Fancy or The III B's Foundation. Mostly I'd love for you to try to make it. It should be a lot of fun and there will be some awesome raffle prizes for you to win! Not to mention good friends and food!!! 

After this fundraiser it will be about 4 weeks until we get to go to my HAPPY PLACE. This vacation cannot come soon enough!! I don't think I have ever deserved a vacation more in my entire life! Plus this year I won't have to come home and immediately go into a 7 hour surgery followed by all the rest of it. I can just go to the beach, relax and enjoy and come home to regular life. It will be amazing!! 

I still can't believe everything I was going through this time last year. I am so glad that I have blogged this experience because its easy to pretend that it wasn't as hard as it really was. If you asked me how I felt the days right after my diagnosis I would tell you that I probably felt fine. I'm not sure if that's true. I know I went right back to work but I don't really remember how I felt emotionally. Probably a little numb. And of course upset. Getting cancer is life changing news. But its been fun the last 11 days or so to live a "normal life". Work, friends, swim classes, the park, ect. 

George and I will be starting out third week of Shaun T's Focus T25. It's been going fair. Its really hard but its nice that there is a calendar to tell us what to do on each day and there is a facebook group so we are all accountable! That's been the best part. Having a group of friends all pushing each other to do this everyday, especially the days you really don't want to (like Friday....2 videos...abs AND legs...no fair!). I am excited to start seeing some awesome results and to get stronger and stronger!!