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!!

1 year

Today is the day. My cancerversary. I can't believe its been an entire year since I was told those awful words. Invasive Ductal Carcinoma. I was sitting in my office when my doctor called around 2:30 or so. I wrote notes on a scrap piece of paper. I cried for just a minute and then I went home. I don't even remember crying anymore that day although I'm sure I did.

As you can see we didn't think I was a stage III at first hence no mention of chemo or radiation. 

Its been the hardest year of my life. There isn't a way to sugar coat it. Having cancer is HARD. In every sense of the word. Its hard on you emotionally and physically, its hard on your relationships, its hard on your bank account, its hard on your job.

But it has also been the most telling year too. I am a million times stronger than I even thought I could be. I have battled this killer from stage III to non-existence. I have lost body parts and hair. But I feel more confidant and feel like I know myself a lot better. I feel closer to my friends and family.

I was just looking through some pictures from my phone photo album called "cancer" and I saw a picture of one of my chemo drugs and just the sight of it makes me so nauseous. I still can't believe I made it through so much in such a short time frame.

I still cannot believe this is me and my life. I miss the old me so bad sometimes. I don't want to know all this medical stuff. Looking at those pictures made me have my first little break down today and I had to keep telling myself that its gone but the fear of recurrance won't ever go away. In some ways that's a good thing because it forces me to be a better version of myself. I don't have any more excuses now. We are on week 2 day 2 of T25 and still doing great. I am writing down all my food and trying to stay under my daily calorie goal and I'm TRYING to stop drinking sodas. I can't promise the last one though! 

Thanks again to everyone for supporting me for the last 365 days. It has been a journey. I know it's not over and that it has just begun but I really, really,really could not have done it without each of you. 

More fundraiser info!

We just opened an account at GoFundMe for people who would like to donate but cannot attend the actual event.

Click HERE for the link to the website. The even should be a lot of fun if you can attend!!

The "R" Word

I have been very eagerly awaiting my appointment today with my radiation oncologist. I was hoping to get the news that I have been so desperately waiting for.

He did an exam on me and asked me some questions. He seemed pretty happy with how I was doing. He shouldn't be surprised. He called me an Olympic athlete the first time I met him. 

When the appointment seemed to be over and he asked if I had any questions I said "so can we start using the "R" word.  And he said...

YES, YOU ARE IN REMISSION!!! 

It has been 359 days since I was diagnosed with cancer. 6 days from it being a year and I am SO happy right now that this part of the journey is over! I know that I am forever going to live with cancer and that it will always be a part of my life but in between the doctors visits (which will be often), I can try to live a "normal" life.

In fact, I don't have another doctors appointment until September. And my radiation oncologist said I could come back in April/ May of next year!

My husband and I are going to spend the rest of the day celebrating and getting some things ready for the fundraiser. I'm more excited about the fundraiser than ever because I can officially say that I am in remission and we can really celebrate.

I am still so humbled to have been so supported by so many during the last 359 days. Its meant everything to me to get countless cards, presents and dinners for me and my family. We cannot thank you all enough!!

Fundraising Event

Here is the official flyer for my fundraising event! 

I'm so excited and so nervous! I just want to raise a ton of money and for everyone to have a good time!! There will be a TON of delicious food and prizes to win! Plus a bake sale...who doesn't love baked goods!! I hope everyone who is reading this can attend. If we can raise enough money to give a couple people a III B's basket and a couple of people a Fighting Fancy bag then it will be a huge success! 

On another note I made it through my lumpaversary just fine. I thought about it a couple times on the 11th but it wasn't a bad day. Plus it's 7-11 and I got my free slurpee from 7-11 so I was happy! I'm still anxious about my appointment on Wednesday and then next Tuesday on the 23rd. I'm not sure how that day will go. 

George and I (and a group of friends) are starting a fitness challenge tomorrow. It's called T25. Watch the youtube video about it. It is super intense but I'm hoping it will jump start to getting me in shape. We are excited about that too. The transformations I have seen have been incredible. Plus if you complete all 10 weeks of the challenge you get a free t-shirt! We should finish the challenge the week after we get back from the beach so I can't wait to see how we look! The company is called Beach Body so hopefully that is what we will end up with!! 

July

I can't believe it's all ready July. I've been dreading this month. My Cancerversary. Where I can think back to everyday during this month last year and remember how innocent I was. I've started to think of everyday of my life until July 23rd as BC (before cancer). I'm anxiously anticipating my appointment on the 17th where I'll hopefully hear the "r" word or NED (remission or no evidence of disease). Although I've been NED since my scans in Sept/Oct I think. But it's not official until treatment is over. 

Last year on this date I was DREADING tomorrow because I didn't want to have blood work done. I still can't believe what happened on July 11th and the days after. I still cannot believe this has happened to me. I knew from the second the lump was found that I had cancer. I could barely keep the tears back in the doctors office. She tried to convince me that it would be nothing and I'm sure she thought it would be nothing. But I had a feeling that this was it. 

I haven't started taking tamoxifen yet. I was going to start July 1 but I'm giving my body a chance to rest for a little longer. I have been EXHAUSTED since radiation has been over and I think it's because I've been running off adrenaline for 11 months. I forget how much my body has been though sometimes. Body parts were removed, nerves and other insides were rerouted and all the poison that was put in my body for months is finally working its way out. 

Later this week I'll be posting the details of my fundraiser. I'm so excited (/terrified/anxious) for it! I hope a lot of money is raised and I can help others that have helped me! Save the date of August 3rd! 

Summer 'do

2 weeks ago I FINALLY decided that enough was enough and I did not wear my wig to work. I felt very nauseous the entire morning before I got to work. I still can't really put my finger on why this was so hard. I guess because I really would have nothing to hide behind. It would totally be out there. But as I figured I was received with open arms. Some people still don't really know why I "chopped off" all my hair but thats okay. But now I want people to know why my hair is so short. It's like my badge of honor. I'm scared people will forget what the last year was like for me. Everyone will move on except me.

 

I've also had a couple people at work come up to me recently and tell me that they had no idea that I have cancer. I was pretty shocked because I know word there usually spreads quickly. But I was also kind of happy because that means that during the past year I've been able to stay mostly myself. I wasn't trying to hide my cancer. But I also don't wear a sign that says HEY I HAVE CANCER!! It has been hard to navigate how to tell and who to tell. I didn't want pity but I also wanted people to know.

Its been such a strange journey. I have been thinking a lot about July 23rd and what has happened since and how hard this journey has been. I thought to myself today how I couldn't believe that I walked into work on July 24 and how I have forged through this far. I get asked that a lot. How am I so strong through all of this. And the answer is and will probably always be - I don't know. I don't know how I did it. And now that things are wearing down and treatment is over I have thought about it more and more. I hope no one ever has to go through this but I know that if anyone does, they will experience the same thing. You just do. You HAVE to. There is no time to not be strong, to not fight on and to not throw yourself 100% into this war. Yes there were A LOT of times where I thought that I couldn't do it. I've even said that I wouldn't do it anymore. And there were A LOT of times were I broke down and felt like I had nothing left to give. But I did. And I still do.

I am still mourning the life that I knew on July 10th. I'm not sure I'll ever stop mourning that kind of naive person I was. Not that I never thought I would get cancer. Just that I never thought it would happen now. I miss my carefree brain and I hate that part of my thinking now and forever has to be occupied by the what if's and more medical information than I ever wanted to know. The fact that I can get blood drawn without feeling like I'm going to pass out pisses me off too! I laugh at how that was my worst fear on July 11th.

But as always, I have to add that I can't express those negative feelings without also feeling SO incredibly grateful. That something pushed me to go to the doctor when I did and pushed me to that doctor that I've never been to. She saved my life. This thing was growing inside of me for YEARS silently. Its terrifying yet I can't help be so happy at the same time. I won this battle.

I went to my plastic surgeon the Friday before last for a post radiation appointment. He was surprised to see how red my skin was until I showed him pictures of how terrible it was. We both agreed my new skin looks great! So now that count down is on for surgery. The earliest he'll do surgery is the beginning of December. I told him about our planned vacation in the middle of January and he thought we should wait until after. But its up to me. I think I will probably wait. I don't want to be on vacation in pain or worrying about the surgery I just had. And I don't want to rush to have surgery just to have it over with before my skin gets a chance to really heal.

I'm still anticipating my appointment in July with my radiation oncologist. I NEED him to say those magic words. I'm in limbo right now and I want him to shout it from the rooftops!

I'm also working on my fundraiser. We picked August 3rd as a date and hopefully I'll have more information to share about it soon. I'm really excited! I can't wait to give back to someone else after all the help I have received.

Last Radiation

The day I have been waiting for FINALLY came. My VERY last radiation. I felt like when I left they would say "okay see you tomorrow" like they do everyday and I would have to keep going....forever. I had 36 radiation treatments over almost 2 months but it felt like its been years of this. Sadly the end of radiation was as anticlimactic as the end of chemo. I wanted pomp and circumstance. So I created myself. Again.

They wouldn't let me take a picture with the machine which is what I really wanted but that's okay. I'm just so happy to be finished!! Although I have been feeling EXHAUSTED. Which is what I was supposed to feel when I was going through treatment. I think part of it is my body relaxing since I'm not constantly driving back and forth and worrying about scheduling and being on time and finishing my actual work everyday. 

So I'm still waiting for someone to use the word remission. I go back to my radiation oncologist in the middle of July. Hopefully he'll share that word with me. 

Here is my hair! 

You can REALLY see it! I'm still not sure what color its going to be. Hopefully RED! I'm ready to start wearing it like this to work. Except that I'm so not. I'm not sure why. I feel like I need to get it like shaped up a little bit. Its longer in the back by my neck than in other parts. And I have random longer hairs all over my head. Not sure why all your hairs don't grow at the same rate!

So now I'm just anticipating my appointment with my radiation oncologist and then right after that is my diagnosis anniversary. I cannot believe I have been dealing with this for almost an entire year. No wonder I'm so tired!

6 more treatments

Tomorrow I continue with my "boost" of radiation. When I went for my first boost on Thursday it took a little while to set it all up. There is a very concentrated area around my mastectomy scar that they are focusing on. There is a cone that comes out of the machine that holds a little metal piece with the shape around my scar. They also drew on me with the same shape so they can line it up. Unfortunately for them, my skin is peeling and their sharpie peeled off this weekend. The boost treatment is much faster then the regular treatment. Its about a 20 second burst of radiation and that's it. Before it was that 5 times.

I am really glad that I have been blogging about everything...the good and the bad. I would NEVER believe today how bad my skin looked the last 2 weeks because my skin is so much better now. I forgot all about my drains and after my mastectomy and chemo. Although every time I think about chemo I get a little nauseous.

I am SO excited to get radiation done. It is such a pain in the ass to go to everyday. When I got there on Friday they told me they were running 45 minutes late so I left and came back later. I think they forget that we are still working people who have lives. Even if I wasn't working, who wants to sit in a waiting room for 45 extra minutes?

I started to not wear anything on my head when I go out, except to work. I still wear my hair to work. But I forget that I have SUPER short hair and then I wonder why some people keep looking at me. Its so normal to me that I look like this. I know if I saw someone with super short hair like mine that I would probably look at them and wonder too. I still can't really tell what color it is. The top looks lighter than the sides. I think just because it stands up and the sides lay flat.

last chemo: 2/28, pic taken 5/25- 3 month hair growth

This weekend we worked on changing Mackenzie's room to a big girl room. Her crib converts to a full size bed so we bought her a bed on Saturday and it was delivered today. Last night as we were putting the frame together and cleaning the rest of her room out I got so emotional. I was always expecting to put another baby in that room and never thought we would be using that full bed so soon. I have been spending the last 3+ years figuring out how to put 2 kids in that room room in my head and now there's no room for another baby. Its been the hardest pill to swallow. BUT the child that I have is SO ridiculously happy with her new room and is so excited to be a "big girl". Tonight is the first night in her big bed and it took awhile but she is finally sleeping pretty! I'm sure Bailey doesn't mind it either!

We also took Mackenzie to her first movie in the theater on Saturday. We saw Epic. She LOVED it! She got her own little popcorn, fruit snacks and drink. She sat still for the entire movie! I was very impressed. Next up will be the new Monsters, Inc. movie comes out in the end of June! 

Next Tuesday is FINALLY my last treatment! I am SOOOOOOOOO excited! 

How things are going

Last Wednesday when I went to radiation they made me see the doctor before I could be treated because of my burns. The doctor said I should have treatment that day but should take off Thursday and Friday giving me a 4 day weekend. The break was nice but it's not like it really helped clear up my burns. They're still here. In fact, today the radiation therapists made me see the doctor again before I could be treated. When they asked how my burns were I said better and worse. There are parts where I can see new skin (right under where it says armpit on the picture on the left) and that's great. But as you can see in the same picture, the overall look is worse. The picture on the right is on my ribs and that's the other gross part that is oozing and peeling. I have been taping surgical pads to me because they're usually oozing. I told the doctor today, its not really painful its just GROSS.

I have 2 more regular treatments and then 1.5 weeks of the boost. I think I'l be done June 4th. That's my guess anyway. That will be almost 8 weeks of treatment on and off. I can't wait for my poor skin to be back to normal. I feel like I have to walk around like I have my arm in a sling so I don't move it too much. At least with the surgical pads it feels a little bit better less gross.

In other news.....

I'm super excited that you can FINALLY see some hair! I still can't tell what color it is going to be. The sides look dark but the top looks tinted red a little bit. Maybe that's just wishful thinking! 

This weekend we also celebrated my brother Ryan's wedding to his new wife Claire! The got married last month in Hawaii (lucky!) and had a party this weekend in Arlington. It was so fun and so great to see all my family. This picture is kind of crappy quality but you get the gist. We are all so happy to have Claire in our family! 

I read this article today on Huffington Post (click here) and it is like this guy wrote it from my thoughts. Its been a lot on my mind lately about how I should feel and how people think I should feel. I try really hard to keep a positive attitude because that's how I cope with having cancer. My happy face isn't to make anyone else feel better about it. Maybe that sounds harsh. It might be. But I honestly can't really care about how my cancer makes other people feel that aren't my immediate family. Some days (besides going to radiation) I really don't think about having cancer. But some days are REALLY shitty and really scary and I almost panic that I actually have cancer. I wish that as soon as radiation is over and I get the all clear that I never have to think about this again but that's not the reality. I'm excited to get this over with and start to be able to physically and mentally move on and hopefully just have to remember I had cancer every 6 months or so for scans. I have such mixed feelings about radiation ending. Obviously I cannot wait to not have to due this anymore but it's still pretty scary to not get any more treatment. 

It's never going to end

I haven't talked a lot about radiation. It's been really hard emotionally and physically. Right now I'm in A LOT of pain. The burns in my arm pit and the area underneath my armpit and on my ribs are starting to peal and blister; its just so painful. The radiation therapist today told me that she was surprised that I seemed happy because I looked like I should be in a lot of pain. I told her I was in a lot of pain!
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Yesterday, I almost didn't get treatment because my skin was so bad. But luckily they did my treatment and I got prescriptions for a new lotion with lidocaine and Vicodin  I used both yesterday and I finally got some sleep. I still woke up every time I moved but I felt rested when I woke up. I was kind of hoping that I would get the fatigue side effect but I have the opposite because I'm in so much pain.

Radiation has been really hard emotionally. I've shed a lot of tears. I said before that it's hard because its a constant reminder that I have a cancer. Mostly I cry after treatment; a few tears here or there while I'm changing. At first I would cry because I was scared about treatments being over but now I'm just so miserable I can't wait for it to be finished. Yesterday I had tears in my eyes during treatment because it hurt to keep my arms over my head (I lay down but my arm pit is so tight it hurts to put my arms up).

As of right now I have 4 regular treatments left and then 1.5 weeks of a "boost" treatment just to my mastectomy scar. During regular treatments, the machine stops at 3 different spots; to the left of me, to the right of me and directly above me. When the machine is to the left and right I had a wet towel put on the right side of my chest to make the radiation more intense there since I don't have breast tissue anymore. Yesterday because of how bad my skin looked, the nurse practitioner decided that I shouldn't have the wet towel anymore. Hopefully, that will make my skin feel better faster.

My radiation burns look so funny to me. There is a definite square on my chest of where the treatment is. I also have 2 spots on my neck (that you can see in pic above). I can't wait until my poor skin is back to its normal pale color. I was expecting to get a sunburn but I really wasn't expecting my skin to get this bad and that radiation would be SO painful. Its starting to feel like treatment is NEVER going to end. I've had cancer for almost an entire year. I'm ready to not have cancer, to not be in pain and to finally get a vacation! 

Happy Mother's Day!

Mom:

I’m not sure exactly how to start. There really aren’t words to say how I feel. You’re amazing. 10 months ago I couldn’t have imagined how much our lives could have changed but if anything good has come from it, it has brought us SO much closer.

I can’t imagine how it felt to have your daughter be diagnosed with the same exact disease that you battled just months before her diagnosis. Honestly, I pray I never have to feel that feeling. And although I know it’s been a very scary journey, you have never wavered from my side. You have been my biggest supporter and cheerleader, my sounding board, my shoulder to cry on and my care giver when I literally couldn't care for myself. You never hesitated to empty drains, shower me, wipe my tears or come with me endless appointments.

I said towards the beginning of this cancer journey that I was the luckiest cancer patient in the world. I am surrounded by the strongest friends and family. This has been really hard. Surgery is hard. Chemo is hard. Shaving my head is hard. Radiation is hard. I try not to think about how hard this is for everyone else because that just makes it harder.

You were the first person I told I needed a mammogram and the one who was there after my mammogram when I found out I needed a biopsy.  You were there when I had my mastectomy and stayed overnight in the hospital with me that night. You came to chemo with me twice, brought me to the ER twice. You just know when I need your help and you are always there without me having to ask. No one wants to have to take their child to the ER at 10 pm on Christmas Eve but you were there without hesitation. You always are. In college, I needed help moving and you were just there. I never had to ask; you just woke up Saturday and drove down to help me.

I’m so glad that we are best friends. There isn't another friend I can count on more than you because you are also my family. I am so lucky that I have that. When I think about me and Mackenzie in the future I pray that we have the same relationship that you and I have. I hope that I can be the unwavering support to her that you have always been for me. 

I'm not sure I could have made it through this cancer thing so well if it wasn't for you. I'm not going to pretend this was easy at all but some how I have been able to (mostly) maintain a positive attitude. I can't wait until this is all over and we can focus on better things, like beach houses and (hopefully) more grand kids. I love you mom. You're an incredible woman who I will always look up to and strive to be more like. 

On a different note. Today was the Susan G. Komen Race for the Cure. Our team was AWESOME! Gretchen made tutu's, Angi brought head bands and Zenia did face paint. We looked AMAZING! It was supposed to rain all day today but the rain held out long enough for the race and for a little dancing at the end! Except for the super early wake up time, it was so fun. I wasn't sure if it would be hard or emotional to be there or not. There were moments were I felt the weight of what this diagnosis means. But fellow survivors would see me and smile or ask to take a picture with me or hug me and that felt great. I knew throughout this journey I have never been alone but to see others that are walking the same path I am was incredible. Thank you so much to everyone who supported our team and especially to my teammates, for putting this team together for me and for being there. 

 

Me and my girl. Also...can you see my hair?! 

Rowena and I

Team Kylez Krusaderz

Zenia and I

Radiation so far

I'm on my 3rd week of radiation. The first Monday I went was just another planning day and they did x-rays and set me up like I was getting treatment. It was really emotional for me for some reason. It took all I had to make it through without crying on the table. But once I got to my car I had a huge breakdown. I think its just emotional to start a new treatment and I made a connection with that particular parking garage and going to see Mackenzie in the NICU everyday (which you can see from the garage). When I was walking from my car to treatment that day the NICU was the first thing I noticed. I felt like I was back 3 years ago. When we brought Mackenzie home from the NICU I was SO happy to never have to look at those halls again but here I am. Walking the same halls for the THIRD time now. And none of them for happy reasons.

I think radiation is also a little more emotional because its a DAILY reminder that I have cancer. During my 6 week treatment hiatus between chemo and radiation I felt like a normal person (minus being bald). But now I have to stop my day and remember that I have cancer. Maybe it will be a good thing. Making me face reality and not be able to live in denial. I think I live in a happy place in between reality and the past.

Tuesday of that week I started to actually get radiation. Its really easy treatment. You just lay on a table. The nurses tug the sheet under you this way or that way to match up my tattoos and then they start. The radiation hits me in 3 different places but the whole treatment, including set up, usually takes about 2.5 Taylor Swift songs. The day I thought about timing it in my head they started her cd from the beginning as I was getting on the table so that's the only reference I have! I think the fatigue is starting to set in. But I'm also sick so I'm not sure if its being sick or the radiation. Probably both.

I finally have a set schedule. 12:15 every day. I was hoping to go before work but the only time they could offer was 8:45 am and that wasn't going to work.

Sign in the waiting room at radiation.

Besides that everything has been going great. I feel great. My hair is SLOWLY growing back. But you can actually see it now which is awesome. Except that its starting to look dark which makes me nervous! I will be so sad if my red hair doesn't come back.

Peach Fuzz!!

Yesterday some daycare friends (girls from ballet class and their moms) and Mackenzie and I went to see a Cinderella Children's Ballet. Mackenzie loved it! She thinks she is a prima ballerina all ready. Afterwards we went to dinner in Reston Town Center at Clydes with our friends and George came and met us with some other dads. Mackenzie had some much fun with her friends and made a new friend...a Great Pyrenees! 

Lastly, my Susan G Komen walk team is getting close to its fundraising goal. And I am $49 away from my 2nd goal of $500! I started at $200 but upped it after I got $201. My team is also doing a 50/50 raffle if anyone is interested in buying tickets. 1 ticket for $2 of 3 tickets for $5. Click this link to donate to my page!! Thanks again for your continued support! 

Radiation

First I'll start with my physical therapy appointment before I get into all the goods about when I start radiation.

I was really happy with how it went today. I was afraid she was going to say that I for sure have lymphadema and there was nothing they could do...my mind always goes to the worst possible thing first of course. But the physical therapist said I most likely have cording (click for definition). After talking to her and seeing the definition I'm confident that is what it is. Sometimes I forget that my body has been through A LOT and that I shouldn't expect it to just do whatever I want it to do without odd sensations. I'm finally getting feeling back in my upper right arm and on the side where my surgery was which is great. The physical therapist told me that this is a "new normal" but about a year after surgery I should be back to my "old normal" which means how I felt before surgery. And although the mastectomy sounds like the most complicated surgery, the axillary lymph node dissection is actually more complex because they have to removed nodes but also move around nerves and lots of other insides and rearrange things.

So on to radiation. I got the call today right before lunch that they were ready to start my radiation. She asked if I could come in tomorrow night. I said night? She said yes around 745. Umm no thank you. First you're either assuming that I don't have plans or that I will cancel them for this. And I do and I won't! I was told that the first session is like an hour and its more like a mapping session with an x-ray and that radiation would start the next day...unless it was on Friday. Then it would start on Monday.

And of course before I talked to the lady I was adamant about having the earliest appointment and I wouldn't take no for an answer. But after talking to her I realized that 65 other people (her number not mine) need radiation everyday too. So for the first 2ish weeks I will be going 7 or 8pm and then I will work my way down the time scale. I'm also reconsidering going in the middle of the day. If I can't have the first couple appointments in the day then its not really helpful. Going at 845am would mean that I would have to use like 1.5 hours of leave EVERYDAY. We'll see. I don't have to figure out all 6 weeks of it yet.

I'm feeling a little nervous about radiation. More than I thought I would. Its just that there's so much unknown. Just like chemo, they can tell you what side effects you could have but they can't tell you what you will have. Except fatigue. Everyone is lucky enough to get that.

But I'm glad that I went to physical therapy when I did because I know that radiation can be so bad for your skin and it will set me back a little bit in terms of my range of motion in my arm. So now I have exercises to do everyday, even during radiation, to help keep my range of motion the same.

Oh and I read the article in Time that I mentioned in my last blog. It was so interesting. And hopeful. Stand Up To Cancer is funding some great clinical trials that are changing lives everyday. Obviously not every thing they find out about cancer is good news but if there is ANY good news that's comes from the research then its all worth it to me.

Happy Easter!

It finally hit me the weekend before last that I don't have chemo anymore!! I know I'm a little late but that was 3 weeks since chemo so that Thursday would have been chemo day. But it wasn't! Now its been 4+ weeks without chemo and I'm loving it!

I went to my oncologist last week and she told me to come back in 6 months! I think I'm recovering pretty good from chemo. I still have a little bit of foot/(c)ankle swelling but other than that I feel great. I told her I have a little pain in my arm so she told me to get checked for lymphadema. I should have called physical therapy weeks ago but I keep putting it off. It can't hurt to go to get tips to prevent lymphadema. So this Thursday I go to the physical therapist. The pain I was feeling at my oncologists office went away but my arm is still feeling sore.

We also talked about tamoxifen which is the drug I will be on for the next 5 years. She said I could start it that day but I kind of thought it would be a little much to be taking Tamoxifen AND doing radiation. I spoke with my radiation oncologist about it during my CT scan last week and he agreed with me. Obviously it made me feel better that he agreed with me but I think I would have waited anyway. It would be hard to deal with the side effects of the Tamoxifen AND radiation at the same time.

When my oncologist and I were talking about tamoxifen we also talked about how chemo and tamoxifen can put some women into early menopause and it will be hard to tell which one is responsible if it does happen. Then she told me I absolutely cannot get pregnant on tamoxifen because it is terrible for the baby. So I asked (again) how long I have to wait to get pregnant. She said we can talk about it in TWO years!! Wahoo!

Last week, as I mentioned above, I had a CT scan for radiation. They use it to map out exactly where the radiation is going to go. I also got my little tattoo's. So now I'm just waiting for them (my radiation oncologist and the physicists he works with) to map it and then they'll call me. Next I will do an x-ray and kind of a trial run and then I start radiation the next day. I'm kind of sad because in a way it feels like I'm done with all my treatments and now it feels like I have to restart it.

My hair is growing back slowly. It's looking very light so I'm scared its grey! But my mom reminded me that there's always hair dye if it is. But she thinks my hairs growing back like it first grew in when I was a baby. Light at first then progressively darker as I get older. My hair was strawberry blonde when I was little and was lighter in the summer. Ugh I miss my hair so much. I hope it grows faster than everyone else's. Ha!

We had a great Easter weekend with family and last week I went to Mackenzie's Easter egg hunt at her daycare. She was so cute. Last year she didn't really get the concept of picking up the eggs but this year she loved it!

I picked up Time Magazine today because of this cover. 

I'm interested to see what it says. I have a little bitterness in me that thinks someone out there knows the cure to cancer but its a better business to keep it secret. I mean if there was a cure to cancer who would get the $15,000 per cycle chemo money that my insurance just paid. There is encouraging news that comes out almost every week about new genes being discovered or as I mentioned before they are working on a vaccine for my type of breast cancer. I can't wait until someone figures this thing out. Because cancer really messes up a lot of peoples lives. And I hate it. 

My friend Beka is raising money as the Leukemia & Lymphoma Woman of the Year and posted this video today: video. This kind of stuff AMAZES and excites me so much! I have tears in my eyes just thinking about it. Also if you'd like to donate to Beka here is the link: donate here!

Radiation Oncologist

Yesterday, George and I went to meet my radiation oncologist for the first time. He is a really nice doctor who spent a lot of time with us and answered all of our questions. Like why I need radiation. Basically, the chemo goes throughout your entire body and kills rapid growing cells which come in the form of cancer or hair cells or cells in your stomach. Radiation kills any left over cancer cells in the specific area where my cancer was. I will be getting radiation from my clavicle bone down my right side chest and under my arm pit where my lymph nodes were.

The part that is really going to suck is that I have to go every single day for 6.5 weeks. It will just feel like a waste of time because I only get radiation for about 5 minutes. So it will take longer for me to drive there, undress, get on the table, get off the table, get dressed and drive to work then the treatment actually takes. BUT if its going to keep me cancer free then I'm happy with it.

The other thing we found out yesterday is what stage my cancer is. Yes its been 6 months since my surgery and I never asked. To be honest, I never really wanted to know. I knew for sure I wasn't stage 1 and I always just assumed from what I read that I am stage 2A. But I am actually stage 3A. I was pretty shocked when my doctor told me. Stage 3 sounds so much scarier than stage 2. But once we left the office and I had a chance to really think about it, it doesn't really matter. I'm in the middle of this battle and whether I'm stage 1 or stage 3, I want to do everything I can to make sure that this stupid cancer go away forever. The scariest thing about this whole thing for me is that its been living in my body for maybe YEARS completely undetected. The other scary thing is that the tiny little lump spread and ended up in my lymph nodes. So now, even though its going to be a very annoying and long 6.5 weeks, I'm glad that I have this extra treatment to make sure every tiny little cancer cell is out of my body.

My radiation oncologist told me that the side effects I will feel from radiation will likely start about half way through. He told me that I would definitely feel fatigue and that I would probably have some skin problems where the radiation is. I'm hoping that I'm one of the lucky ones who gets zero or little skin irritation but I'll continue to expect the worst and hope for the best! I will probably start radiation in about 3 weeks. Next week I have a CT scan that they use to map out where exactly the radiation will go AND I will get my tiny little tattoos. Not quite the tattoo I thought I'd be getting but at least they're just little dots!

Today marks 3 weeks since my last chemo and I am SO happy that I did not have to have chemo today! I am feeling so great. AND I finally got to go get my nails done!! Wahoo!!

Tomorrow I have a follow up appointment with my surgeon. I can't believe its been 6 months since my surgery. Its hard to believe how much has changed since I saw this doctor last. Actually its hard to believe how much has changed since I saw this doctor for the first time! Its been 8 months since then.

I can't wait for June to be here and to be done with all treatments and to try to put this all behind me. I really, really, really hate cancer and I cannot wait for SOMEONE to find a cure SOON!

Chemo recap

I am SOOOOOOO happy that chemo is finally finished and I am feeling better. My doctor asked me if chemo was easier or harder than I thought it would be and I told her it was easier. It wasn't easy by any means but as I said in the beginning I hoped for the best and prepared for the worst. I was lucky that chemo wasn't too terrible for me. I think my worst symptoms were stomach related. My stomach had its signals backwards and my stomach would be empty but I would feel nauseous (because my stomach was empty) so I wouldn't want to eat but I would have to because that's the only way to get rid of the nauseous feeling. If that makes sense! I took my nausea meds around the clock for the first 3 days or so after chemo just so I wouldn't feel sick. 

The first 3 or so cycles I felt hungover on the Sunday after chemo. I think because it was the day after my steroids stopped. The 4th cycle I don't really remember because I was so sick besides chemo. The 5th and 6th cycle I had terrible insomnia after my steroid ended which is ironic because most people have insomnia as a side effect of the steroid.

The side effect of ending chemo that I didn't expect was sadness and fear. Its weird to say that you are sad about chemo ending. During chemo you can FEEL the medication fighting against your cancer and when it ends there's nothing fighting against your cancer anymore. Its kind of scary. And that's where the fear comes in. I don't get to just move on from this. I have to think about cancer for the rest of my life. Every pain, headache or weird feeling is going to scare me and that's what I hate the most.

I was calling March my month off but its turning out to be my month of appointments. Friday I chipped one of my teeth so I need to see this dentist this week (my least favorite doctor). This Friday I am scheduled to get my port out and I need to do blood week at the beginning of this week for that. Then next week I meet my radiation oncologist and at the end of the week I have my SIX MONTH follow up appointment with my breast surgeon (can you believe my surgery was 6 months ago?? I cannot!!). The last week of March I have my post-chemo appointment with my oncologist. By April I might be ready to just be doing radiation and not having to see doctors every week!