Monday, June 2, 2014

Video update :)

Hi friends!

I've been working on this video for a while, and think it's ready to go. Just wanted to update everybody on the last year of my life, but mostly wanted to thank everybody so much for all you have done to help me get through these rough months. If there's one thing cancer has done, it's been to help me see the good in everybody around me and learn that making that small gesture to somebody in need can really mean the world to them and can change their life!

I remember seeing some videos like this when I was diagnosed, and it helped me so much to see people on the other side of everything and helped me to know what to expect. Hopefully my video can be the same source of comfort to someone else.  Here it is!

http://youtu.be/SYbtntvZT_0

XO

Julie

Wednesday, May 28, 2014

"A new normal"


It has been seven weeks after surgery. Hard to believe! Time has flown by, thank goodness. And I hope it continues to!

I have recovered nicely from the surgery (according to my doctors) and I'm now finished with my weekly "fills" in my expanders. That's where the plastic surgeon fills my expanders (temporary implants, or my "pet rocks" as I like to call them :/ ) with fluid each week to gradually stretch out my skin. They're like placeholders for the real implants that I'll get at my final reconstruction surgery. The actual process of filling them hasn't been bad, since I'm still basically totally numb, but after each fill I was usually really sore for a couple of days. I reintroduced myself to my old friend hydrocodine a couple times after the fills. I was not expecting the pain to be as bad as it was.  But with each fill I started to feel better and better about the way I looked post surgery and with that I started feeling more and more like my old self again. Not gonna lie- those first couple of weeks after surgery were really really rough. I was sore, sick, stuck at home, and looking in the mirror nearly made me cry every time. Now not only did I have no hair, but I had no boobs, and instead, I just had a couple of giant scars! It was like a worst nightmare come true. I felt like I looked like (the bride of) Frankenstein! That may have been my lowest point of this whole thing... that week after surgery. But since, I have gotten stronger and stronger and am feeling MUCH better now! I've started working out again, last week I played tennis for the first time, and I've been getting in some tough workouts at the gym. I've been pleasantly surprised at how well I have been able to tolerate the workouts! Tennis went OK, but serving was a little rough with my right arm. That's the arm where they removed 15 lymph nodes. I was not expecting the lymph node thing to be so horrible but it was the worst part! What's funny is that I didn't even know until my follow up appointment a week after surgery that my doctor had removed 15 lymph nodes. I remember thinking "OK well that explains a lot!" My right armpit hurt so bad and it took a while to get my mobility back in that arm. I still have a big indention in my armpit and it's so numb under there. Then, at my first doctor's appointment after the surgery my oncologist told me about "lymphedema" which sounds like a horrible thing that I'm trying to avoid. Apparently when you have your lymph nodes removed, the fluids in your arm don't drain through your "lymph system" anymore like they should (or something like that) and you run the risk of getting lymphedema- the swelling of the hand and arm. It's a disease that won't go away but can just be maintained. Ugh. They recommend wearing a compression sleeve any time I fly or exercise..... forever. Nobody had warned me about this! There are all different theories on lympedema and wearing the sleeve... but I'm for sure wearing it on flights and kind of feeling it out for the exercise thing.

As far as the hair is concerned, well, it's growing!! The top is maybe about an inch long. It's growing in thick and darker. I thought I would be happy to just have hair but now that I just have hair I want it to be normal hair again. I still have the problem where I'm jealous of every person that I see that has hair. It's just such a weird thing to be jealous of EVERYONE I see. haha. Your hair is definitely part of your identity and it's hard to feel like my same self now! I'm going to get one more "system" soon that I will have for the wedding, and then I may try to go "system free" later in the summer. I don't know. I'm always trying to figure out which is the lesser of two evils--- super short boy hair or fake hair. Both options suck to be quite honest! But I'm trying to make it all work. I know I just need to be happy to be here, and I am, but now that I've gotten through the hardest part I just want my normal self and life back! I know it will just take time. Sigh. Any hair growth tips are welcomed!

This is my hair as of now, with a little over 2 months of growth! Only a couple more years and maybe I'll like it again :) 


Anyways, we are getting so excited for the wedding! It's only about 24 days away. I think everything is ready to go besides my head :) But oh well!! I'm hoping everything else will be perfect and I won't think about it too much. We are taking "engagement pictures" later- like a year from now when I have more hair, and I'll take my bridal portraits later, too.  After the wedding, we will go on a little mini vacation to Port Aransas with our families (Kelly's family will be here from Canada!) and then I will have to come back to Dallas to begin radiation on June 30th. The doctors said waiting until after the wedding was totally fine since I had such a good pathology report, but they want me to start pretty quickly afterwards. So we will have a delayed honeymoon in late August since I need 6 1/2 weeks of radiation. Then I will have my final reconstruction surgery in December. So it will be over a year from the date I was diagnosed to finally being "finished" with all of my procedures.

One thing I have done is to try and gain more knowledge on the subject of cancer, but I'm trying not to stress over it or let it take over my life. I read from many fellow survivor's blogs that they are anxious and nervous every day that the cancer is going to come back. Any time that they feel sick or just a little off, they're worried it's cancer.  I don't know why, but I'm just not worried like that. I feel so proud of how far I have come, that I heard those fabulous words that I am "cancer free," and I do NOT plan on ever having cancer ever again. I mean, that's why I had my bilateral mastectomy- so it has nowhere to come back. I know it can return elsewhere, but I just don't see any point in worrying about that. It's not my personality to worry about things (a blessing and a curse..) but worrying won't change anything! I now know that I got this awful disease because I have the BRCA1 gene, and not because I did anything wrong.  Not because I ate too much buttery popcorn, drank too many sodas or.. ahem.. vodka waters, not because of wine, and not because I stood near a microwave or put a cell phone in my sports bra. There are so many ridiculous theories out there! I just don't feel like I need to totally change my life around to keep it away. Of course, I'm definitely trying to maintain a healthier lifestyle, but I'm not going to stress about every little thing in my body or things that I do in my day to day life. I just want things to go back to "normal", although I know "normal" is going to be a little different now. Every day I am just happy to be alive!  I am so thankful for the kindness that has been expressed to me over the past few months, and this whole ordeal has really made me have a new outlook on life. I'm trying to stay focused on the positive, and I'm thanking the Lord every day that the hardest part is over and I'm cancer free!! I will keep the updates coming although they'll probably mainly just be me whining about my hair from now on.... LOL. Poor Kelly has to hear it all the time! Thanks again to each and every person who has commented, sent well wishes, cards, gifts, monetary donations, flowers, or anything else... I can't wait to pay the kindness forward to others for the rest of my life! That's all for now.... keep loving on your hair for me as always!! XOXO

Update with new hair that I'l have for the wedding!!! Thank the lord for Follicure!

Friday, April 11, 2014

Best News Ever!

Well I guess I should lead with the big news. My cancer is gone!!!!! I received a call from my oncologist and her nurse yesterday saying that my pathology report was back and that there was "No Evidence of Disease" anywhere in any of my removed tissue. :) This means I'm cancer free!!!!! Apparently all the chemo worked beautifully and my cancer was gone before the time of surgery. It was the best news ever and really lifted my spirits :) Now I can just focus on recovery knowing that I have nothing to be scared of, this isn't spreading and I'm not going anywhere!!!

Surgery was on Monday April 7th.  I went in to Baylor Uptown at about 11:30 AM ready to go. My family was there to greet me which was awesome. I checked in and sat down with them as I waited for my name to be called to go in. I decided I should go to the bathroom first and when I went I saw a sign on the door that said "females- check with office staff before going to the restroom- may need a urine sample." So I went to the front desk and asked them if I could go to the restroom. They said that I did in fact need a sample and to go back to the prep area and use the restroom there. So I did. Then they took me to the patient room and told me to undress and put on my gown. I asked if I could go back out to the waiting room to see my family first since all I told them was that I was going to the restroom and then disappeared.  They said no, and that they would come back to see me. I felt like I was hijacked!!! I didn't even have my purse! LOL. But they were right, not long after I went into the room Kelly came back to sit with me and then not long after that the rest of the crew came back. My mom, LA (stepdad), Uncle Bill, Aunt Lisa, Chad, Laurie, Dad and Barbara (stepmom), Pammie, and of course Kelly were all there with me as we waited in the prep room. We said a prayer and had some laughs and my anxiety level was good. I was glad they could all be there with me to wait to be taken into surgery. We had to wait for my surgeon to finish her prior surgery and then when she was getting close to being finished the anesthesiologist would come back and get me started on the drugs. The first thing that they did in the waiting room was to put my IV in through my hand. It kind of hurt! It's still sore but that's the least of my worries now. :)After a while the Anesthesiologist and nurse came back and told my family that this was it, I was going back to surgery. On the way to the surgery room the anesthesiologist asked me a couple questions, and that's all I remember. I must have passed out during his line of questioning. The surgery then began around 1:30 and lasted about 4 hours. Dr. Knox took two hours and Dr. Potter (the plastic surgeon) took two hours. Each of them came out to update my family on the progress throughout the day and I am very appreciative of that. I do sort of remember waking up in recovery and Kelly was standing right there by me. He said the first things I said were "can I have some chap-stick and can you itch my right arm" Ha!! I've always loved chap stick. I was in recovery for about an hour and then was moved into my room at the hospital. I had some flowers already waiting for me in the room which was awesome. I had a few visitors that evening but mostly it was just Kelly with me by my side all night long. I can't even begin to explain how awesome he has been through this. I already knew he was an amazing person but I've just been so pleasantly surprised at how he's handled all of this and at what a good caretaker he is. It sucks that his fiancĂ© had to lose all of her hair, eyelashes, eyebrows and now her boobs.  Not to mention my demeanor hasn't been quite the same as it was when we fell in love. It's such a scary thing to go through, but he hasn't wavered or distanced himself for a second and I love him so much more for that. I truly can't wait to marry him!!! I made a promise to him that "I'll be cuter than I ever have been for the rest of my life after this!" Of course he says he doesn't care, but I do. :) He is just so awesome and I'm so thankful for him. The night of the surgery he sat right by my side and fed me jello and ice chips, and gave me lots of chap stick. :) I woke him up throughout the night when I needed things and he was always right there by my side.

The next day, I ate a breakfast of eggs and bacon, and saw a nurse just about every hour. Both surgeons came to check on me, looked at the incisions and said that everything was looking good. I had one little incident on Wednesday where I got  nauseous and poor kelly couldn't find a trash can or anything for me. I had to have the nurse change all my clothes. :)

I was told that I could go home whenever I was ready. I decided to stay through lunch time and then we left the hospital around 1:00. I have nothing but great things to say about all of my nurses and my experience at Baylor Uptown. They were so kind and thoughtful and caring and did a great job. They also kept my family very much in the loop and I know they really appreciated that.

Since I've been home, things started out a little rough. I spent all of Tuesday and Wednesday in bed, and couldn't keep any food down. I started to run a fever on Wednesday night. I was taking hydrocodine every four hours for the pain. It kept the pain away, but I guess it was making me sick. We called Dr. Knox's nurse yesterday to let her know what all was going on. She got mad at us! She said I should be up and doing things and not laying around. I needed to be doing my arm exercises and breathing exercises more and walking around the house, even going for walks outside or going out to run errands. That seemed a little extreme, but I've since been much more mobile and I've been feeling better. My fever was gone this morning and of course getting that amazing news yesterday helped my spirits and gave me strength. Now the cancer is gone and I just need my hair to get growing!!!!!!!!!! I'm so excited to be done with the two hardest/biggest steps, chemo and surgery. I get to go to get my drains taken out on Monday morning at Dr Potter's office, which will be amazing. They are gross and I feel like I'm pregnant with all this extra baggage on my tummy. Kelly's gone back to work and it's a very busy week for the Stars. I've had some fun visitors and my mom has been right by my side since I came home! She is a great nurse. :) Thanks to you all for your love and support, for sending flowers, and for the  donations to my web page to help my pay for all of this stuff. It has been such a stress relief to know I don't have to come up with the thousands of dollars that  it takes to beat cancer. But I'm so glad to say that I've done it, I BEAT CANCER.... the rest of my life starts now!!

XOXO Julie

Sunday, April 6, 2014

It's a go... and it's coming soon!

My apologies for not updating until now.. but my surgery plans have been a little wishy washy. But the big news is that surgery is a go for tomorrow. My platelet counts went way up when I got my blood drawn Wednesday. So that's great! But my white blood cell counts went down... they always seem to flip flop. Luckily there is a shot to boost the white blood cells, so I went in and got that on Friday and Saturday. Today, I went to a different clinic at Baylor that is open on Sundays for a CBC (complete blood count) so they could monitor all my counts and make sure we're good to go. They said I would get a phone call if there were any issues... and I didn't get a phone call so that must mean everything looks OK!

Surgery is set for tomorrow at Baylor Uptown. For all you Dallas friends, that's right next to the Rustic.  I'd like to think I could go there for a victory cocktail and some country music after surgery but I should probably wait a while. :) I check in at 11:30, and surgery is supposed to last four hours. The anesthesiologist just called and one of the things he said is that after surgery I will go to recovery for an hour and half.  So I'm guessing I'll be finished and awake by about 6:00, but who knows! I am not supposed to eat or drink anything after midnight tonight- so that's going to be tough! I drink so much water and they said I'm not even supposed to do that! Hopefully I can sleep in late and will not have to worry about it so much.

I've had a good day today, my last day with (these)  boobs. :)  I probably haven't fully taken advantage of this day though as I've worn a big sweatshirt and now a big T shirt all day.... So sexy!! Ha. But it's been a good day because I've been surrounded by my whole family all day long. My dad and stepmom drove in from Austin and my brother Chad and his girlfriend Laurie are here from Austin as well. They've actually been here all week, because they were planning on coming for the originally scheduled surgery last Monday and ended up staying all week to hang out with me. :) Same with my mom so we've spent all week together, and my stepdad came up from Austin yesterday, too. Oh, and my cousin Matt was who's like my little brother was with us today as well. :) We all went to my favorite mexican restaurant, Chuys, and then came over to my place to watch the Stars. The Stars blew the game after being up 2-0, so that wasn't cool! But we had fun watching. Kelly should be on a flight back from Florida now and I'm really looking forward to seeing him!!!

Thank you all so much for the love and prayers..... I can feel the prayers and they're giving me so much strength and positivity. There's no way I could do this alone and I'm so blessed and happy to be surrounded by so many amazing people in my life. I'm pretty nervous, and now that I've talked to the anesthesiologist it seems even more real.... but I know I am in good hands with all of my doctors and I know that most importantly of all, I'll be in God's hands and I'll be safe and sound there. I'll have my mom guest blog tomorrow with an update for everybody, but just know I'm in good spirits and excited to get this show on the road and to be one step closer to getting back to my normal life.

Keep loving on your hair and have a great week everyone! I have three more hours to eat so I guess it's time for my leftover quesadillas. :)  XOXO

Julie


Monday, March 31, 2014

On second thought....

On second thought... I'm quite glad that I wasn't cut open today! :0 I had a very nice day and enjoyed being healthy and conscious! It was funny, I kept thinking all day long, "I could be knocked out on a surgery table right now but instead I'm watching Ranger baseball at work!" or "I could be getting my boobs cut off right now but instead I'm in spin class!" It was a funny day.  I'm going to take advantage of the next week and enjoy being healthy and try to work out every single day. As long as I'm feeling up to it of course. I'm very sad about not being able to exercise for a few weeks after the surgery as it is often my favorite part of the day and of course I'm trying to get in great shape for that big day on June 21st! Also, when I'm alone and at home with nothing going on is when I get down about all of this... one of the best things for my mental state has been to keep on going to work, going out with my friends, going to Stars games and practices, and of course working out. I'm not going to be able to do any of those things for a while so I feel like it will be harder not to get down in the dumps. But hopefully I can avoid that! I'll get my blood drawn again in two days and will find out if my platelets have gone up. If they have then we will go forward with the surgery on April 7th. Fingers crossed! As of now, if I have surgery on April 7th and start radiation four weeks after, then I won't be finished until June 13th. My wedding is June 21st. So it's cutting it close already, and if my surgery is pushed back again I could be in trouble! Hoping for the best. I will keep y'all updated. Keep loving on your hair please, I miss mine every second and have had some random cries about it lately to be honest.  Oh, and GO STARS... our team has 8 regular season games left and they're one point out of the playoffs.... Kelly's on the road all week as they play 4 games in 6 days! Cranberry and I will be watching and cheering. Have a great week, everyone! I'll update on Wednesday. XOXO

Friday, March 28, 2014

Change of plans.... again!

Just wanted to give everybody an update that my surgery was pushed back a week. It will no longer be this Monday, it will be on April 7th. I went for a blood draw on Tuesday and my platelets were so low they wanted to be safe and push the surgery back instead of waiting to see if they go up. If my platelets are too low, my blood is really thin and I'd bleed too much during surgery and also won't heal as quickly. Neither of those things sound good! So I know they are making the right decision. But I was pretty bummed as I was all ready to go, had my schedule cleared, family had plans to come in town, etc. I want to keep this "journey" moving forward!  I went back yesterday and checked again, and they had gone DOWN, so now my fingers are crossed that they'll start going up a lot very soon! My next  check is on Wednesday. I thought I was finished with #plateletprayers but apparently my body just has still not recovered from the chemo drugs. So #plateletprayers are back on!! In the meantime... I'm going to try and make the most of it and enjoy my extra week before surgery!! Thanks so much for all the love and support and I'll keep everyone updated. :)

XO

Julie

Thursday, March 20, 2014

The waiting game

So my last chemo was a go! I have been done with chemo for a week now and it feels great. I mean.. I don't feel much different but it feels great to be done with that first (long) step! I think it was a total of 5 and a half months.  Now I am just in waiting mode... letting my body recover from the chemo and waiting for my blood counts to get back up before surgery which will be coming up very soon on Monday, March 31st. Rangers opening day! It'll be a far cry from eating hot dogs and drinking beer at the ballpark this year!

I'm really nervous for surgery. I know I will be OK and I just keep telling myself that they do these surgeries all the time. It's only my second surgery ever and my first was to put the chemo port in back in October. I've basically cleared my schedule for the month of April as I've heard the recovery takes quite a while. Kelly's hoping to get that Tuesday's road game off so he can be there with me for the surgery. It will be his first game off in about five years! Then he'll hopefully go to meet the team on the road. Of course, that week is one of the Stars longest trips of the season.... typical! But my mom is coming up to take care of my for a couple weeks and that will be nice. If anybody has any good movies or TV show recommendations, send them my way!! :) On the bright side, I bet Cranberry will be happy to have me to snuggle with for a month :)

I'll have my expanders put in at the time of surgery. I've heard that they are rather uncomfortable, especially when they fill them with fluid each week. I'll have drains basically hanging off of me for at least a week after the surgery. Fun, huh? Having the drains in will limit me to staying home that whole time. I'm already grossed out by the drains and I haven't even met them yet. Ugh.

I will find out the results from the pathology lab at an appointment with my oncologist on April 10th. They'll tell me if all the cancer is gone or if they still found some hanging around after they did the mastectomy. I FEEL like it's all gone. But who knows! I really really really hope so! If not, my doctor said they would most likely give me a pill to take every day of radiation. (Which is..... every day.) She said they have pretty much given me all the chemo drugs that they can give me besides this pill. But let's hope we don't have to worry about that! Prayers for a good report on April 10th!

My hair is starting to grow back.... which is nice since I only just finished chemo! It is about half an inch long and looks like it's growing back darker. Not cool, hair! I was hoping it would grow back the color it first grew in when I was a baby, really blonde! But no such luck. I'm still going to wear my "system" for a long time, until I feel comfortable going without it. And then I will hopefully get extensions once the hair is long enough. I actually went and met with an extension lady yesterday to see how soon I could get them. She said she could technically do them before my wedding but that she honestly thought my "system" looked better and was a better option. She couldn't believe how good it looked! That's what most people say when they see it and find out that it's not my hair. So I guess it looks pretty good to outsiders, which is good, but I still think about how much I miss my hair every single second of every single day. I'm really sad to be getting married without my hair. But I am really happy to be getting married, and that's what matters! Funny how my thoughts always come back to the hair.... it's just the very worst part!

I have definitely had my fair share of "why me" moments lately and it's still been tough. A lot of time has passed but I'm still in disbelief that this is my life. It's just so surreal. But I know I'm lucky to be doing as well as I am so far and I know things like this happen to people all of the time, and it doesn't make sense to them either. For example, I saw a story about a lady who lost her leg at the Boston Marathon and was starting to dance again. Now THAT's a big time "why me" situation! It's just not fair! We all need to just be so thankful for each and every day that we are here on this earth, live life to the fullest and especially, please be so thankful if you are happy and healthy! I hope to be back in that category soon. I've got the happy part down at least. :) This surgery is just the next step for me to get back to the healthy part.  I'll give another update after the surgery... maybe I'll have a guest writer blog to let you all know how everything goes! Until next time....... keep loving on your hair!!!

XOXO
Julie