Never Forget

Today is my 2 year Cancerversary. I feel everything about it. Sad, mad, lucky. As the day was approaching I really had no feelings about it. But last night it hit a little hard. And then this morning. I read my blogs from 2 years ago and just the enormity of it all was like a weight on me. But once I got over it I had a great day. It was weird because I felt all day like today was a celebration. Like it was my remission day instead of my cancerversary. But I guess it is a celebration. Its been 2 years since I heard those awful words and I'm still here and I'm healthy!

I started off my day doing the same thing I did right after I got the news. With a large McDonald's Coke. Then I went to Target of course. I took this picture because it has (almost) all of my favorite things- McDonald's Coke. school supplies, Target, Coach! What a dream! The school supplies are for Mackenzie's playroom. Hard to believe next year they will actually be for kindergarten.

I ran more errands then went early to pick up Mackenzie. Every Wednesday in the summer they have a special show at daycare so I watched the magician with her. And I got to hold my friends baby! After we left, we met George in Crystal City for dinner. We went to Ted's Montana Grill. This was the quote at our table. I thought it was fitting for today. 

Afterwards we went next store to Cold Stone! Nothing better than having a milkshake to celebrate! 

When Mackenzie and I walked back to my car this was on the ground. It was kind of out of place because someone just wrote these numbers on the ground and I'm not really sure why. But I parked in the spot labeled 23. July 23. The day that changed everything. 

I labeled this post Never Forget because I have been feeling lately that everyone is forgetting what happened to me. I had cancer. Really bad cancer that spread. I had body parts amputated, poison poured into my body, multiple surgeries and procedures and a laser that burned me so bad I had blisters. That happened. I know that it is easier to forget. I really wish I could. But then I look in the mirror and see my 9 scars and I remember. I look at my lymphedema sleeve and I remember that my cancer caused my lymph nodes to be removed. My hair. My short brown hair. 

I was telling George after my fundraiser last weekend that cancer is so weird because some of the people that you expect to be there aren't. And the people that you never expect to be there or don't know well step up in huge ways you'd never expect. People I didn't know made my family dinner when I was going through chemo. Friends (namely the Morrisons) took our daughter at a moments notice on multiple occasions. Its amazing that you can meet/become great friends with people because of this awful disease. Things that I will never be able to repay no matter how hard I try. 

Back to the fundraiser. It was AMAZING!! My fear is always that no one will show up. But they always do! And we made a lot of money this year. And of course you can still donate online! {link} I'm probably going to close it the first week of August so I can get The III B's Foundation and Good Wishes their checks! I'll share pictures when I get more. I hardly took any pictures but my brother took pictures for me which I appreciated! I can't wait to share final totals. I'm hoping we made more than last year! 

As always thanks to everyone for all of your support. I knew when I was anticipating this diagnosis that I would want to tell people so that it would be out there. I was hoping that people would rally around me and you did. It is an amazing feeling. 

It's July

It's July. I'm dreading this entire month. There are a lot of dates that mean a lot.

July 10th is my fantasy date- the last day before I went to the doctor and the lump was found. The day I dream about and wish I could go back to. The day my biggest worry was having my blood drawn. The day where my 2nd biggest worry was when I would get pregnant. It makes me a little sad because July 10th used to mean a lot more. It means my baby is a half year older and it was also her baptism day. Obviously those things are still relevant but now July 10th means something else too and I hate that it takes away from Mackenzie.

July 11th is lump day. I remember sitting in the office so vividly. I remember her in the middle of the breast exam tell me that I need to especially check the upper inner quadrant because that's where most cancer was found. And then it was. In the exact spot she said it would be. But I also remember being reassured that it was nothing and getting a mammogram was just a formality.

July 17th- REMISSION DAY!! Strangely this is the date I always have to look up. I can never remember which day I actually went into remission. Technically I was NED (no evidence of disease) on my mastectomy day but they can't tell you you are in remission until treatment is all over.

July 19th. One of the hardest days. Maybe even emotionally harder than the day I found out I had cancer. I went in to have a mammogram on my right side. Then the tech went to talk to the doctor. Then they did a mammogram on my left side "just to compare" (that should have been my clue). Then I waited and had the ultrasound done. I still laugh thinking that I should tell her (the dr) where the lump is. Obviously she could see it on my mammogram and went directly to that spot. And then the biopsy. I remember sitting in the waiting room trying not to ball my eyes out in my gown. Then I saw my mom walk back into the room and I just couldn't keep it in anymore. I just kept thinking- I'm half the age of everyone else and I'M the one that is having this happen. The biopsy wasn't painful just very strange. Plus when you hate medical stuff as much as I do it was hard because you are between the doctor and the tech. The tech is using an ultrasound machine with the screen on one side and the doctor is doing the biopsy on the other side. No where to look!

July 23rd. The day. I still can't think about it without tearing up. I still think that I cannot believe this happened to me. Sometimes it seems like it didn't happen. But of course there's the scars and short hair and lymphedema sleeve that remind me that it did. This year I decided to take the 23rd off work. I'm not sure what I'm going to do that day. Maybe nothing. But it needs to be acknowledged. It's kind of ironic because I was at work on the 23rd when I found out I had cancer. And I went to work the day after like nothing happened.

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There's a group I follow on Facebook called Stupid Cancer. They always post a picture that just says "Cancer is lonely". The first time I saw it it really made me think. Cancer is SO lonely. No one gets it. I don't really expect anyone to get it but just remember that it's not over. It will never be over. Just because I am in remission doesn't mean that these scars aren't real, that I don't have to think twice about every single pain I have and that the emotional toll isn't becoming much harder than the physical part ever was. I'm never going to get over this. Cancer will always be in my life. I wish it wasn't. And most days I don't think of it (except when I'm putting on my lymphedema sleeve) but there are still days when he pain and loneliness are hard to bare. And I don't mean lonely like there's no one around. For me loneliness is wanting to say things that shouldn't be said. Wanting someone to understand what I'm feeling. Wanting someone who lives with these scars and knows exactly what all of this entails. 

I know there are support groups, ect but honestly I'm not really interested. I was playing phone tag with a counselor at the hospital but I stopped because asking for help is a lot harder than I thought it would be. But I need to call her back. Especially this month. This Cancerversary feels harder than last year. And I still have 3 weeks to go. 

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But this July 19th will be AWESOME because it will be the 2nd annual Kyle's Fund It Forward (link)! I'm so excited about it! Everything is starting to really fall into place. Of course if anyone has anything to donate for a raffle or knows anyone who would please let me know!! I am all ready having nightmares so I hope that means it will be very successful! I've been pleasantly surprised but the amazing raffle prizes donated so far! I'm so happy that I can give forward to these 2 charities that helped me out so much. It is very helpful to make me feel a purpose to all of this- especially this time of year.

Lymphedema

One of the biggest fears for survivors is recurrence. But another huge fear is the dreaded lymphedema (link). Obviously even survivor hopes neither happens. Unfortunately I'm one of the ones who now has to deal with lymphedema.

Its been a crazy month for us. The Tuesday after Memorial day my husband, George, was hospitalized with bleeding ulcers. He was in the hospital until Friday. The stress of your husband being in the hospital, plus holding down a full time job and being a parent is overwhelming. But we did it. He was treated and is now on medication (maybe for life) and he is feeling much better. The week after that I had what I thought was a sinus infection. It was a rough week. I also noticed that week that my right arm looked a little larger than my left arm.

I emailed my physical therapist on Tuesday and told her about the swelling and she brought me in on Friday for an appointment. She measured my arm and then did manual lymph drainage (link). Its interesting because MLD is very soft massage but it gets your lymph system moving. We decided that since the lymphedema was an early stage we should be aggressive and that I would get bandages on my arm the next week.

When I went in on Tuesday I had MLD again and then we started bandaging. I had NO idea how involved the bandages would be. I went back on Thursday to have them removed, have MLD again and get re-bandaged. I took them off on Saturday when I just couldn't take it anymore (I was allowed!).

I have to say that Tuesday and Wednesday were REALLY hard emotionally. I felt SO defeated by this stupid thing on my arm. It gave me such anxiety that I couldn't take it off- I mean I could have taken it off but I wasn't supposed to. I kept thinking I beat CANCER! Why do these foam and ace bandages have such a hold on me? It still really surprises me. I was totally fine with the bandages until I got it on on Tuesday and then I kept remembering all of the things that would be really hard for me to do- write, type, start my car, take my contacts out, put on make up! Oh and did I mention my husband was out of town that entire week? On top of barely having use of my right arm, I was all alone.

How my arm looked on Tuesday.

Wrapping my arm to shower by myself- seran wrap, garbage bag and medical tape. 

Everything that was on my arm. 

I go back this Friday to see my progress. I should be getting my sleeve in the mail tomorrow or Friday that I will wear everyday for the rest of my life. I am really hoping the rest of the swelling goes down soon and then we can just work on keeping the swelling gone and keeping the lymphedema at an early stage. Another option is to rebandage so that we can hopefully getting the swelling all the way down. We will see how the appointment goes on Friday.

On a happy note- I'm so excited that next month I will be holding my 2nd annual Fund It Forward event! I hope everyone can come and having a great time and spend a lot of money!

2014

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

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

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

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

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

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

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

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

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

Another cancerversary

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

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

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

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

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

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

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

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

Breast Cancer Awareness Month

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

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

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

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

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

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

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

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

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

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

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

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

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

1 year after surgery

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

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

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

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

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

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