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

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

ONE.MORE.

TOMORROW IS MY LAST CHEMO!!! HOPEFULLY EVER!!!

I'm very excited to be almost done with the first stage of my treatment! It hasn't been horrible for me, but I'm ready to be one step closer to the end of this journey. Tomorrow I will get my blood drawn at 9AM and as long as my counts are good- which they should be- then I will get my last treatment. It is just going to be one drug, taxol and it should only take about an hour. It's also my mom's birthday so she'll be on hand and then we will have lots of celebrating to do tomorrow night!

I will say that I have been so happy with all of my treatment and the wonderful doctors and nurses that I have met at Baylor Hospital. I will miss them! I'll see my Oncologist one last time a week from tomorrow to check my blood counts one more time and see how everything is looking before surgery. Surgery is set for March 31st. I'm pretty nervous about it and not looking forward to being stuck in bed for 2-3 weeks after. Especially during the most exciting part of the hockey season and when the weather is turning pretty!! But gotta do what you gotta do I guess, and hopefully it won't be too terrible.

I've felt really good lately and been really busy with work. I've had some great opportunities come up to do some more pre and post game reporting for the Stars games in addition to producing and reporting for my show, Stars Insider.  Besides when I am at the hospital, I almost forget sometimes that I have the C word (I'm tired of saying it) and it has been great! I just want my normal life to go on and so far I've been able to do everything I'd normally be doing. (Just doing it all without my real hair which again has been the WORST part and really the only terrible part so far.)

So..... so far so good, and I'll give another update after my last chemo treatment!! Thank you for the continued love and prayers!! XO

The Chemo Countdown has begun

I officially have 5 more weeks of chemo left... that's 37 days..... or 888 hours.. but who's counting???

Last Monday my platelet counts were still not high enough to receive the scheduled taxol/carboplatin treatment. I met with my doctor after having my blood drawn and she said that since my body did not seem to be recovering well from the carboplatin we would try and change up my infusion schedule. Instead of telling me to just try again in a week, we came up with a new plan. I will now be receiving chemo treatments weekly until I am finished instead of every three weeks. Every Wednesday will be chemo day. Happy hump day to me! :) I will get taxol on a weekly basis, (as it is often given when it is the only drug) and they will try to "sneak" in carboplatin when they can. Hopefully that will mean carboplatin every other week if it is given to me in smaller doses. This way my body won't get hit so hard all at once with the drug but I will still be getting it and I'll hopefully still see the same results. (Remember... carboplatin is specifically good for triple negative breast cancer patients WITH the BRCA1 gene receiving chemo BEFORE surgery. So specifically.... ME!) The best case scenario is still for all of the cancer to be gone before my surgery. However, I won't know how well the chemo worked either way until after the surgery since they have to examine my tissue under the microscope. At this point, all we know is what the doctor can feel manually and it seems that things have been feeling better, but she says it's hard to tell for sure. My last report was "significantly more subtle" signs of the tumor. To me it feels like it's almost gone. But that's me :) She said that sometimes it can still feel like the tumor is there or has not shrunk all the way, but then when they examine the tissue during surgery they find that it is only scar tissue that had been felt and the cancer is gone. That's what I'm hoping for!

So-if all goes as planned, and it should since we have a new and improved plan,  March 12th will be my last chemo treatment. Also my mom's birthday. Happy Birthday, mom!!!!! :) I am SO ready to be done. Chemo has been OK for me but I'm more than ready to let my hair start growing back. I've recently lost my eyebrows and eyelashes and I'm not gonna lie, it has been pretty miserable. The past few weeks have definitely been the hardest. I've tried to keep a positive outlook but I definitely have had my fair share of random cries lately. Not looking like myself has been really hard- it's a constant reminder every day that I'm "sick" and fighting a huge battle, when all I want is to be living my normal life that I had before. I've told myself that for the rest of my life- if I have my health and hair and eyelashes and eyebrows.... I won't complain about a thing. And I mean that!!!

In happier news- it's the NHL's Olympic Break and I'm very excited for a couple weeks off with Kelly. He's been working like crazy ever since I was diagnosed right when the season started. We are in Austin now to see my family and do some wedding things.. then on Friday, (Valentine's Day!) Kelly, Isaac (Kel's son), and I will go to  DISNEY WORLD!! I'm so excited to spend some time with both my boys in the happiest place on earth. I could use some mickey mouse and a happy ten year old "future stepson" in my life right now. :) Isaac is a true joy and a blessing to me and I just love him so much!! He's definitely a huge "bonus" that I will get in marrying Kelly..... and thanks to him I get to do fun kid things now like going to Disneyworld!  :)

Prayers are appreciated for this 5 weeks to fly by, for the chemo to WORK and for my hair to start to GROW!! Happy Valentine's Day to all!

XOXOXO

Julie

OK Chemo.... quit playing hard to get!

I guess it's about time for an update! It's been a good few weeks- my spirits have been pretty good and I've been staying busy with work, family, and friends. The bad news is that last Wednesday was supposed to be my chemo day for treatment # 7 but it had to get delayed again. I was really hoping this one would stay on track! They gave me a smaller dose of Carboplatin at chemo #6 which was supposed to help to keep me on schedule.  But apparently it still hit my bone marrow pretty hard and my platelet and white blood cell counts were low again. There is a white blood cell shot called Neupogen that I could take but my platelet counts weren't even high enough for me to get that shot. This is just so extremely frustrating! It's so weird that my counts are so low but I feel fine, and apparently there's nothing I can do but wait. The doctors said to be careful because I am at high risk for infection right now, but I haven't gotten sick lately even through all the crazy flu outbreaks in Dallas. (Knock on wood.) I have been working and working out lots in an effort to keep my energy level up and get into good shape before my surgery! We are now going to try for treatment on Monday. I have a lot of praying to do at bible study on Sunday night. :) Oh wait, it's the Super Bowl... OK I'll be praying during the Super Bowl!!!  If I get the treatment Monday I will be happy as it won't be TOO much more of a delay. I have set my wedding date for June 21, 2014. It was set on that date based on my initial schedule which would have me DONE with chemo NOW!!!! I was initially supposed to finish by the end of January. With all these delays I am getting nervous about the wedding date. After I finally finish these two rounds of chemo I will have to wait 4 weeks (I think) after that to have my mastectomy. Then I have to wait four weeks to start radiation, and radiation will last 5-6 weeks. I'd prefer not to be doing radiation or even finishing up radiation the week of my wedding. The radiation can cause burns and can make you tired. I already have enough to deal with... like not having my real hair or real boobs at the wedding...eeeek.... so I'd prefer to not be burned and tired too! Just a simple request! I don't care much about colors or flowers or centerpieces or cakes or food or anything else...... I just want to be healthy and happy and walk down the aisle to marry my best friend! I should know more after Monday but fingers crossed I get my treatment and can stay on track!  I will say that the wedding planning has been so fun and it's proven to be a very good distraction from all the other crap I'm dealing with. I'm getting so excited for the festivities to begin! #plateletprayers over the weekend are very much appreciated..... need to keep pumping that chemo through my body to make sure the cancer is getting killed. It's funny even as I write the word "cancer" it feels like I'm talking about something so foreign. My friend Abby told me a story about somebody who said to her "Oh you're the one whose friend has cancer" and I thought to myself..... "Oh no, Abby! Which friend? That's horrible!" And then quickly remembered that friend was me. YIKES. I still feel like this is some kind of horrific dream and I'm still constantly bewildered that all this has happened.

Now for an update on my always exciting hair adventures! I got some new hair today and that has helped my spirits. The last "system" was shedding soo bad and it was getting very thin. I couldn't really wear it down anymore.  I was actually asked to do the sideline reporting for the Stars games two days last week.. (Something I would LOVE to do full time so it's always an "audition" for me when I fill in) and of course I finally got the opportunity when my "hair" was looking it's worst and I barely had any eyebrows or eyelashes! I think it turned out alright, though. I tried and tried to put on fake eyelashes on my own and quickly destroyed three pair in about ten minutes. It's so hard! Going to keep working on it. I told Kelly earlier that I really think my disposition throughout all of this really has a lot to do with my current hair situation at the time. I feel like that may be a general rule for all of us ladies anyways- mine's just a bit more extreme! When my hair looks bad or fake I don't feel like myself and it's just a daily reminder that I have cancer. When it looks good and I feel cute I feel much better! I wish I was a scientist/doctor because whoever eventually comes up with a way to keep hair from falling out during chemo will be helping out so many women around the world more than they know! And they'll probably be crazy rich!  It has seriously been the very worst part of all of this. And I know it's going to be a LONG time before my real hair is as long as it was and as long as I'd like it to be. Keep getting those pixie cuts, celebs! Maybe we can make it cool :)

I'm off now to the Mavs game and have a nice relaxing weekend planned. I am having brunch tomorrow with a girl who I share many mutual friends with here in Dallas who was diagnosed at age 24. She's 28 or 29 now and cute and healthy and happy so I'm really looking forward to chatting with her about her experience. I really cherish and appreciate when people who have gone through this mess reach out to me- especially those who went through it in their twenties who can relate! The friendships I have made with those in my "cancer circle" have been a true blessing. Hopefully one day SOON breast cancer will be a thing of the past, but until then we have to stick together and help one another get through the rough times!  I will give an update next week and let you all know if I'm able to get my chemo on Monday! Hope everyone has a fabulous weekend. XOXO

My newest "Do"... and eyelashes with the help from the nice folks at MAC Makeup counter!!

Julie

Chemo Update

Yay! All the prayers worked, ya'll! Thank you Lord! My platelet counts were where they needed to be so I was able to move forward with my 6th chemo treatment yesterday, finally! After hearing my counts were good I went to see my friend Greg at FitSteps who is conducting the exercise research experiment and I did my 30 minutes of walking on the treadmill. I tried to walk fast and on a high incline to make it like a "real workout." Then I went to get chemo and my blood pressure was a bit low during the Taxol treatment.. it was dropping every 15 minutes when the nurse checked, so we started to worry a little bit.... it got down to about 85. I was also half asleep when the nurse was taking my blood pressure thanks to the IV of Benadryl that they gave me before they started the heavy drugs. But once I sat up and had half a turkey sandwich and some cranberry juice my blood pressure went back up to 100. The nurse thought the fluctuation was perhaps from the workout that I did prior to the treatment, who knows! Just glad it went back up and they didn't have to stop down the Taxol treatment. Also, my doctor dose reduced both my Taxol and Carboplatin drugs which should hopefully keep my platelet and white blood cell counts at a normal level and keep the delays from happening in the future. I'm going to go in and see them in two weeks from today to do a blood draw and see where things stand a week before my next chemo, because although my platelet levels had gone up this time, the white blood cell count was on the low end. If that's still the case in two weeks they can give me a shot to help the counts go up before the next chemo. So fingers crossed I can stay on track... only two treatments left, I'm starting to see the light at the end of the chemo tunnel! Then I get to open up the doors to the mastectomy tunnel which I'm sure will be a lovely tunnel. :) (Insert grossed out face emoticon here).

Anywho, all is well and I'm feeling good- had no nausea or sickness just a little drowsiness from the Benadryl. Went to my regular Pure Barre class today and have spin class tomorrow- time to kick in that wedding workout plan as we're just over 6 months out! Mom is staying with me until Kelly gets back from NYC on Friday night/Saturday morning after they play. We're having fun wedding planning and watching Juan Pablo on the Bachelor.

Thanks so much for all the love and prayers after my last blog post- they truly helped and I love you all!!!!!! XOXO

Julie

Welcome 2014..... (Please be nice!!!)

It's been a month since I blogged.... yikes! It's been a busy month and I have lots of updates.

Aside from getting "the news" in September..... the past couple of weeks have been the toughest for me. I've now tried twice to get my 6th round of chemo and both times my blood platelet counts were too low so I couldn't move forward with treatment. It's like getting amped up for a really big game, or prepping for a big trip...  clearing your schedule, packing up your bags and then getting to the airport and having the trip canceled. Twice. Never thought I would WANT to get chemo so badly!  My next attempt will be this Tuesday. I wish I could eat platelets or something.. (I'd do it!!)  but apparently there's nothing you can do to bring the count up but wait. The doctors said that it's not a scary thing or something that I need to worry about but it is really bumming me out because I want to get this stupid cancer show on the road and now it's more than two weeks behind schedule! I had my mastectomy scheduled for Feb. 24 which was going to work great with the NHL schedule- (Kelly would be home and off)  but now it looks like it will be the week of March 17th and he'll be on the road the whole week. So all in all it's more than a two week delay, then the start of radiation will be delayed two weeks and it will now take me into early June instead of being done mid May. If I'm able to get my chemo this Tuesday then they'll give me a lower dosage of carboplatin for the next three rounds, which is the drug that is affecting my platelet counts. So hopefully I can get back on schedule!

I'm also really missing my hair!! I got my new "custom system" put on last week and although I do like it, I guess I was a bit underwhelmed. I am very appreciative of it and the color is much better than the "temporary" one but it just doesn't look as natural as I was hoping. It looks pretty good down but when I wear it up it looks strange. You know that game that little girls play in the pool where they go under and get their hair wet then come up with the hair in their face and flip it over  to look like Martha Washington? That's how I feel when I put it try to put this hair up.

Oh Google you never cease to amaze me.  Searched "Martha Washington pool hair"  for this lovely picture.

I like to wear my hair up ALL the time so this is quite frustrating! It will be a while until my hair is going to be back and long enough to wear without any sort of wig so I'm just trying to deal with it as best as I can! It's awkward when I'm working out or when I'm in my pure barre classes- I can't really wear it up over my ears. I get distracted when I'm in workout class or at the gym or just out in the world in general because I just stare at everyone's real hair and miss mine. I think I'm even holding a grudge against my cat for having pretty hair. (Sorry, Cran!) I guess in the grand scheme of things it's not important and yes, I know it will grow back..... but it's really been getting to me lately. Maybe because everyone always looks so cute during the holidays and I feel the least cute I've ever been right now... thanks to the fake hair, the thinning eyebrows/eyelashes and the loss of color in my skin. I'm trying my best to be cute through cancer but it's pretty tough! That cancer's a real A Hole. I also think it's funny that I've had about three different "hairstyles"AKA "systems" on the air this past month! Trying to do my best to keep up the gig even with the fake hair.

In other news.... I've learned more about the mastectomy/ plastic surgery that is in my future and feel confident in my doctors that will be doing the procedures. There are a lot of options for the reconstruction and it sounds like we'll figure out which one to move forward with after I'm done with radiation. Then I have to wait three months before the final reconstructive surgery. 

One other surprising thing that I've learned is that I do in fact have the "BRCA1" gene which means that the cancer is hereditary. It makes no sense and I was totally shocked to hear that news since nobody that I knew of in my family has had breast cancer.  But at least I have more of an idea of why this has happened to me at such a young age. It wasn't something I did!  It turns out my mom has a cousin on my grandpa's side that does in fact have the BRCA1 gene and has battled breast cancer twice. After hearing that news my genetic counselor said that she wants to test my mom for the gene. She said in almost all cases in which a child has the gene, they contracted it from one of their parents. So now we have that to worry about!!! I'm encouraging my mom to get the gene test- because even if she does have the gene, she'll at least know and there are many options for her. It's the same kind of deal that happened to Angelina Jolie.... her mom had breast cancer and she knew she had the gene so she took care of her breasts before they took care of her! Not a bad idea at all and I honestly wish I'd somehow known that I had the gene so I could have done the same thing. They'll also probably want to test my brother for the gene because he could be a carrier. If he's a carrier, he'll be like me and have a 50% chance that he'll pass the gene down to any future children. I was really hoping to not have the gene so my current family and future family wouldn't have to worry! Which brings me to another topic......having kids. 

The discovery of this BRCA1 gene means that I'll have to have my ovaries removed eventually. The  gene is connected directly to having a high risk of both breast cancer and ovarian cancer. As my doctor put it... my ovaries are now a "ticking time bomb" and there is a very high chance that I could get ovarian cancer as well. YAY! She said that I could probably wait about three years before having the hysterectomy so that gives me about a three year window to have kids, if I can in fact have kids. That's probably not going to be easy since the chemo destroys basically everything inside of you.... including your ovaries. I'm trying to be optimistic about it. I'm getting a shot of a drug called "Lupron" every three weeks that is supposed to help protect my ovaries so I can hopefully still have children.  (It also has some lovely side effects such as hot flashes! Little future baby.. I love you so much I've brought on early menopause for you!) Those hot flashes are not joke. Ugh. So I've tried to find stats about conceiving after chemo and there's just not much out there... since most people who get this disease are at least 40 and have most likely had children already. I am researching all my options and will probably contact a fertility clinic to find out more about my specific situation and what I can do. It's funny- before cancer I was not on a fast track, or really any track to have children. I actually was planning to wait as long as I could so that I could focus on my marriage and career... and maybe I'd just get another cat to tide me over :)  But now... after finding out that I may not be able to have kids of my own, I think about it all the time and it's something I want more than anything in the world. (And maybe it's also due to the fact that all my friends are getting pregnant! Very happy for them. :)) 

It's crazy how you think you have life all figured out one moment and the next you learn that you indeed do not, not at all. As much as you think you have everything in control, it can all be changed within a second, within a doctor's appointment. God had a different plan for me so I'm going to do my best with it. It hasn't been easy and I know it is still only the beginning. It's going to be long journey to get my normal life back.  So for now, I'm just going to pray that I can get my next chemo on Tuesday and move forward with the plan, mentally and physically prepare myself for the impending mastectomy, and try to keep on keepin on!! I know it will all work out in the end. :) And a million thank you's for everybody's support and encouragement! I could not do this alone.... that I know for a fact!! Hope everyone has a great start to 2014.... keep loving on your hair and getting those mammograms for me!! XOXO