Advocacy Day

Yesterday George and I went to Capitol Hill to participate in Resolve's Advocacy Day. I debated about attending for weeks- maybe months. But then the House of Representatives passed that awful healthcare bill and I decided that I would do anything I could to help. 

I felt a little weird about going. I still don't really consider myself infertile. I had cancer and I can no longer even try to get pregnant. But I probably am infertile from chemo. I just don't know for sure. But these issues are important for every woman. Every person in this country knows someone who is infertile. You might not know you know someone- but you definitely do. 1 in 8 couples is affected by infertility. Not just women- men too. And no one talks about it. Because we think we aren't supposed to. But it is SO helpful to so many couples if you share your story. It is the worst feeling to think that you are alone. 

We didn't really know what we were in for with Advocacy Day since it was our first time attending. When we got to the hotel for some training they had breakfast for us and we got started with all the information we needed to know. I knew a little bit- they have SO much information on their website including a training that they recorded that I watched earlier this week. 

We were there to talk about 3 main issues- IVF for Vets, Adoption Tax Credit Refundability and personhood bills. 

IVF for Vets was passed last year but only for 2 years. It expires in 2018. Active duty military have access to IVF through their healthcare which is great. But vets who are wounded causing problems with their reproductive systems (both men and women) did not have coverage. Can you imagine fighting for our country, getting wounded and then having no coverage when you wanted to start a family. The bill that is on the table in the House and Senate would make the IVF for Vets permanent. 

The Adoption Tax Credit Refundability would change the current tax law so that even if you don't owe taxes you would still get the tax credit back. Right now you can get up to $13,000 back as a credit but only if you owe. This is especially unhelpful to most families who adopt as they are usually middle to low income households who might not owe taxes. There are 4,700 children in foster care in Virginia. It would save our state $67,000 to $127,000 for each child that is adopted out of the foster care system. Not only would this bill be helpful to families but it makes sense for states too. 

The last part was personhood bills. Currently there are a couple in the House and the Senate. We are opposed to personhood bills. Personhood bills give rights to basically a zygote. HR 586 seeks to define that "the life of each human being begins with fertilization" and a "one-celled embryo" is "a new unique human being". This would be detrimental to couples who have to use IVF to have a child. This bill would make a law that says a women has to have ALL embryos transferred to her- there's no freezing or discarding them. Some women have 10 or more embryos. How can this be safe for her or the embryos they say they are trying to protect? While I understand part of the intent of these laws are anti-abortion they are far from being pro-family. They are certainly not pro-life and they are not pro-woman. Similar bills that have passed at the state level were used to prosecute women for having abortions. These bills would guarantee that we would not be able to have any more biological children. That is not very "pro-life" or "pro-family" to me. 

We got our schedule for the day

We listened to many speakers including Barbara Collura- President/CEO of Resolve

And Representative Timothy Walz from MN

After we listened to speakers we met with our state delegations. Virginia has a very large group and met with each other and we talked about who was going to say what in each meeting. We got to see who would be coming to our Representative meetings from the larger groups. Then because we had a 10:30 meeting we left the training a little early to walk over to the Capitol. 

So I knew the Capitol was large but WOW! I forgot about all of the other buildings attached. Thank God for the underground tunnels as it was around 90 yesterday! 

First stop was the Russell Senate Office Building to see Tim Kaine. 

The Russell Building is GORGEOUS! Exactly what you think when you think of the Capitol. We had some time before our first meeting so we waited and took in the architecture. 

This is where the media films members of Congress for their shows. We saw a couple giving interviews- although I didn't know who they were. 

Still waiting! 

George and I in front of Tim Kaine's office. 

This is our whole Virginia delegation! So big that we barely fit into Tim Kaine's conference room. Unfortunately we did not get to meet with the Senator but we met with his staffer. She was so knowledgeable and listened to our message. 

Next up was Mark Warner. We used the underground tunnels to get to the Hart Senate Building. I just want to say that umm it was A LOT different that the Russell Building. It looked like an old hotel. It was so interesting to see how different those 2 buildings are! Fun fact- I actually have met Mark Warner before when I was in SGA for 1 year in college. We took a trip to Richmond and we all got to meet him and take pictures with him when he was Governor of Virginia.

There was so many of us we couldn't even fit in Mark Warner's office so we met in the hallway. We were told in our training that we might have to meet in the hallways with some Senators or Representatives and that we would probably only meet with their staff. Obviously the men and women in congress are very busy! But their staffers are each focused on different issues such as veterans affairs, taxes, etc so it was helpful to meet with them. 

After our meeting with Mark Warner's staff we went to lunch. We didn't all stick together, some left the Capitol building and some of us ate in the cafeteria. It was nice to get to sit down and get a break from all of the walking and to get to know some of the advocates from our state a little better.

After lunch we went to the House of Representatives. Before our 2:00 pm meeting with Don Beyer we passed out letters to other Representatives who didn't have constituents there on Advocacy Day. We stopped at 2 offices but neither had staff available to meet with us so we left our information and letters for them.

One thing I was really looking forward to was riding the tram! Because I thought it took you all the way to all of the buildings- I thought it would have different stops. It doesn't. But it was nice to cut out some of the walking and it was still fun to ride!

After we dropped off the constituents letters we went to Don Beyer's office who is our Representative in the House. I was excited because I heard that we were actually going to meet with him (and we did!). It was funny because there was just 4 of us there really early for our meeting so we waited in the hallway when we saw Don Beyer walking towards us. He said hello to us and we told him we would be in soon! 

This is our group for Don Beyer. Obviously geography helps for our group to be so big but I think its important for our Congressmen and women to see the people who are facing the issues they are representing us on. We all crowded into his office- his staff was so accommodating of us. He saw on his desk and listened to all of our issues. It was nice to talk to him personally. I wish I could have asked him more questions but we stuck to the issues! 

George and I with our Rep. Don Beyer. He is such a kind man. It was helpful to talk to 3 democrats about the issues we wanted to discuss because they all were very supportive. 

After our meetings there was a reception with some snacks and drinks. We filled out our form about the day and then I pretended like I was in a House of Representatives committee. I think I fit right in! 

We cut out of the reception a little early to make our way back to Arlington- but not before a selfie with the Capitol. 

Gorgeous inside and out!

I don't know how accurate this is because its from George's iPhone but I think it was pretty close. If you are going to a day at the Capitol be prepared for a lot of stairs and steps! 

One think we were totally unprepared for was the dogs we say in the House! We were walking down one hallway, I looked down an adjacent hall and saw a girl throwing a ball to her dog. Like the size of Bailey! And then after our Don Beyer meeting we saw a man walking down the hall with his black lab puppy. I took a picture of him but sadly he was too wiggly and it didn't come out. His owner said that if the Rep you work for allows it then its okay- usually during recesses. The staffers do a lot of hard work for most of the year so I think its so cool they get to bring their dogs in when they have a little break! 

Overall I think Advocacy Day was a huge success. I am really glad we went. I hate that it takes something personally affecting you or someone close to you before you really start paying attention but we are here now and ready to continue fighting for this. I think people either forget or don't know that infertility is a medically diagnosed disease. It makes no sense that most insurances do not cover it.

I want to end this by saying a HUGE thank you to my husband George. He didn't really know what he was signing up for (oops!) but I told him it was important to me, and us, and he took the day off and went with me. I've heard awful stories of husbands and wives who don't make it through cancer diagnosis or infertility. Not only has he always shown unwavering support of me and our family but he does it without complaint or asking "why me/us". He has been my rock, my cheerleader, my shoulder to cry on for the last 11 years. We never ever thought we would have to go anything like this, let alone so young and so early in our marriage but I think we have been even stronger together. There are times when I don't think I can go through this surrogacy stuff anymore but he continues to help me search for the light at the end of the tunnel. I could not have ever found a better partner for me through all of this or life in general. Again, thank you so much George- I love you forever and ever. 

Four

Yesterday marked 4 years since I was diagnosed with cancer. I say this a lot but it feels like yesterday and a million years ago at the same time. July is a hard month for me. I spend a lot of time reflecting back to that coresponding day in 2012 and remember what I was doing and what that felt like. Surprisingly July 10th is a really hard day for me. That's the day I wish I could go back to. The day before the lump. Before cancer ever entered my world.

I know now that I am a million times stronger than I ever thought I was on July 10, 2012. And I know a lot more about myself, life and friendship then I did that day too. And although sometimes I get upset when I think people have forgotten all I've gone through I know for sure that my family is loved and will be cared for. 

I had a physical Friday. I realized last week that maybe having a physical in the office where my cancer was found the day before my cancerversary wasn't such a great idea. Last time I had a physical 4 years ago I walked out of that office with tears in my eyes- terrified of what this lump might be and hoping that my worst fears weren't coming true. Friday I walked out of that office with tears in my eyes- this time of pure joy. I'm healthy. Besides needing a little vitamin D, I am healthy. 

When you go through the worst time in your life it is amazing how everyone comes together around you. People you barely know, people who are your best friends, your family. Friends made us dinners, friends watched our pets, friends took us to lunch to get a break and most importantly to me, friends helped us keep Mackenzie's life as normal as possible. We can never thank you all enough. 

I'm so glad I wrote down everything I went through because I often find myself thinking "my mastectomy wasn't that bad" or "chemo wasn't that bad" and I will go back and read about it and be surprised at how much I've forgotten. I'll also remember how bad radiation was- it was the worst! 

I feel a little guilty for not having my fundraiser this year. I just needed a mental break I think. Looking for a surrogate takes up a lot of space in my brain. In a way I can thank cancer for teaching me that sometimes there's too much on your plate and it's okay to leave something off. I really do enjoy my fundraiser though so I am hoping that I can bring it back next year! Although I, of course, wish I never had cancer, the pink sisters I've gained from my association with The III B's Foundation and Good Wishes Scarves have been amazing. 

George and I decided since we weren't doing the fundraiser this year maybe we should get away for the night. Unfortunately when your cancerversary is in the summer every place books up fast or is SUPER expensive! And as much as I love the beach, thinking about all the traffic took that quickly off the list. We are so grateful to the Gan family for letting us use their country getaway for the night. I love city life but sometimes it is nice to break away from that and sit outside in the country and look at all the stars in silence. 

We spent the day getting massages, eating and gambling- a few of my favorite things (we were so glad my BFFL Min could join us for some gambling and dinner!). A lot of times things like a health crisis can strain relationships but I feel all of this has brought George and I closer. It was so hard for him to watch me go through all of this but he never showed me- he never left my side. I'm so grateful for him. 

Thank you for following along the last 4 years and standing by us as we have navigated this new life. We are so lucky to have so many friends and family around us! 

Chemo

3 years ago today I was recovering from my first round of chemo. I can't really remember specifics about that day. I'm so glad I blogged that whole experience because either I don't really remember things or I remember them differently.

I re-read my blog (click for link) from that day and I'm struck by 2 things- I still, even after 3 years, cannot believe I had cancer and how brave I must have been walking I there for the first time. I hate to call myself brave because I didn't have a choice but I was. Your first chemo is definitely the scariest because you don't know how you react to the medicines. My chemo friend found out she had a heart condition because of her first round of chemo. 

These past 2 weeks I've been thinking about when I had cancer a lot because I am still recovering from reconstruction surgery (recovery is going good- just have to keep reminding myself that I am getting better everyday). My family and I have been through so much because of stupid cancer. The trauma of that experience will never go away. Like any other trauma as time goes on the sad and scary feelings happen less often but their intensity remains the same. I just hate this hold cancer gets to have on my life. I don't get to make many decisions without considering it and I hate it. 

This surgery recovery has been easier than last time but still annoying especially because I never wanted to have anything like this done and I will have restrictions for another month. The first time I cried at a doctors office after being diagnosed was at my plastic surgeons office because I couldn't get over how ridiculous it was that I now have a plastic surgeon. I'm annoyed that even 3 years out I am still having to change my life because of cancer. 

Speaking of that- I think we have decided to do our egg retrieval in the beginning of the year so that I can start on my lupron shots and go into menopause. So again I am not only reminded daily that I had cancer with my tamoxifen but now also monthly with a shot. Cancer never goes away.

We are starting to get a little hopeless about finding a surrogate. I just feel so blah about it. The end of the year is coming soon and I just really expected that we would have some sort of good news by now. I knew not everyone would jump at the chance to get to be our surrogate (we did have 2 great candidates that didn't work out) but I just I guess naively thought that someone would be pregnant with our child by now. Waiting is the worst. Mackenzie asks a lot about having a brother or sister and I wish I could tell her why I can't get pregnant and that we need a surrogate but I don't think at almost 6 she will understand all of it. And I don't want to upset her more than she already is. 

These "cancerversaries" always bring up a lot of emotions for me. It's crazy to remember what it was like 3 years ago going through all of this and how life is now. I am a better person for having gone through all of this but I wish that I could have learned these lessons in a less life threatening way. 

THREE YEARS

How does 3 years go so fast and so slow at the same time? I can still picture myself- sitting in my office- when my phone rang and I knew at that moment that I had cancer. Some days I think- how did this happen to me. I call them my Nancy Kerrigan moments- why me? why now? I feel a little guilty in those moments because then I always think- why not me. Who else should this have happened to if not me?

I wish this never happened to me. That's obvious. But it did. And although sometimes the emotions of it are right at the surface mostly it's just a little blip in my life that happened 3 years ago. Someone asked me the other day how I handled emotionally being told I had cancer. And I answered like I've answered it for the last 3 years- I have no idea. You just do. There is no choice. You push through it until it's over.

I realized this morning that it was the 23rd (although I've been preparing for it all week) and I just kept thinking about like going to chemo, getting radiation and everything that went along with having cancer and I just started crying. Then I'm thinking- don't cry before work! You're going I ruin your makeup! Haha whatever makes the crying stop I guess. But I realized that July 23 has really turned into a day of celebration. And as it should I think. It's been 3 years but I'm here and I'm happy and healthy and that's most important! 

I picked Mackenzie up and we went to Crystal City and had dinner at Ted's Montana Grill and then got milkshakes at Cold Stone (just like we did last year). We took our milkshakes to Gravelly Point and watched the airplanes. Although it's so loud every couple of minutes while the airplanes land or take off it is so peaceful there. There's water and fields and it's just such a calm place to be. And tonight the sky was SO blue and not a cloud in the sky! 

It's been a crazy ride the last 3 years. I've learned a lot of medical things I never wanted to learn but I've also learned a lot about myself. I wish I could have learned all of these lessons another way but I know today that I am I better person than I was 3 years ago. And I know that I have the best friends and family in the whole world. 

In 2 days we are having my THIRD annual Fund It Forward and I'm so excited! I love that from this experience I have gained a ton of friends and experiences that I never would have of I wasn't diagnosed. I hope you can come but if not I hope you will donate. The III B's Foundation and Good Wishes Scarves does such great work for so many men and women diagnosed with cancer. The link to donate is on the sidebar of this blog. 

As always I could have never gotten through this without all of your support! Thanks for sticking by me for the last 3 years! 

Fund It Forward 2015

I'm so excited we are having our THIRD annual Fund It Forward event on July 25! I cannot believe this will be the 3rd one. I remember trying to plan the first one and just hoping that someone would show up or donate ANY money at all! It's daunting to tell a charity you are raising money for them. But you all showed up- in a big way. And again last year as well.

So of course I want this year to be even more successful than ever before! That's why I want to explain why this event and these 2 charities are so important to me.

Almost 3 years ago I was a 28 year old wife and mother of a 2.5 year old, enjoying the summer. We were so busy with work and raising our child and keeping our house together and play dates (for us and Mackenzie!) and everything that comes with being a working parent- or just an adult really. But we knew that we were ready to expand our family so because Mackenzie was premature without a reason we decided I should get a physical done. I was so terrified of having my blood drawn (that still makes me laugh- I can't count how many times I've had my blood drawn since) and that's all I was thinking about in the days leading up to July 11th.

But then my world came crashing down. I'm not sure many of you really understand how earth shattering this really was. I know that everyone goes through moments in their life that are challenging and that feel really hard- and I know they are- I've been through plenty. But people die from cancer every single day. And on July 23rd (well from July 11-October when I had my scans done) I thought I might be one of those people. I mean if we are being honest I still could.

Then during that time when your whole world is torn apart, when it feels like nothing will ever be right again people step up. People you love and who love you, new friends, old friends and strangers. No one at The III B's Foundation knew who I was when they dropped off baskets at Virginia Hospital Center. No one at Good Wishes knew who I was as they were ordering fabrics and sewing beautiful scarves together. But all of these people surrounded us and got us through this horrible ordeal. Without us having to say a word. All of these wonderful things just happened.

Even though I had cancer. And had body parts amputated. And put poison in my body. And had my skin burned off. I will NEVER EVER forget those moments when people who loved me and strangers came to my side and carried me through it.

I can't tell you how surprised I was when the staff from the hospital walked into my pre-op room on September 18th with a GIANT basket full of goodies. I couldn't even see how many items were in there because there was just SO much. And there are a lot of items I still use (the stuffed bear still helps me sleep) and a lot of things I didn't think to get (a loofah with a long handle because I couldn't raise my arms). I'm sure when Carolyn started The III B's Foundation she thought about those moments when her family and friends carried her through.

I found Good Wishes through my search of free stuff for cancer patients. To be honest I didn't really know if they would send me anything or not. I applied and picked the scarf I wanted and waited. I applied for a lot of free hats and I never heard back from any others. I received my scarf in December when I was all ready bald. To my surprise the package not only held my scarf but also a card that was signed by EVERY member of the office. And it was personalized. And not only that, every scarf they send out they put the persons name that is receiving the scarf on their wall in the office so they can remember all the scarves sent out.

Since last year's Fund It Forward I was invited by Good Wishes to travel to NYC to film a news segment talking about Good Wishes to CBS which was a lot of fun. And in February my husband and I attended The III B's Pink Tie Charity Ball where I received an award for my fundraising. Being able to meet other women on different stages of this journey but who are brought together because of the these 2 charities has been incredible.

To me- Fund It Forward is and never was about any recognition for myself- but only to get The III B's Foundation and Good Wishes Scarves more recognition (and MONEY!!). I wish that neither of these organizations had to exist. I wish they could figure this cancer thing out and no one else would ever be diagnosed- but until that day both of these organizations will keep lifting peoples spirits- one basket and one scarf at a time.

I hope you all can make it! And if you can't make it I hope you will consider a donation CLICK HERE TO DONATE (or click on the link on the top right). Every tiny bit counts and even $5 is $5 more than we would have without your donation. If this money we raise can just help a couple women to feel a little loved while going through treatment then we have had a successful fundraiser!

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!!

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.