Sunday, January 5, 2014

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


  1. Hi Julie. I'm a fellow breast cancer survivor (diagnosed at 28) and at the risk of sounding like a total freak, I sent you a msg on FB about a month ago. I've been reading your blog since you were diagnosed and want you to know I've been praying for you. There is a light at the end of this crazy dark tunnel and you will get to it! I'm now 2 years out and doing fine. I'm also brca2 (with no family history at all). I'm currently researching pregnancy after breast cancer and we're hoping & praying for a miracle baby after chemo ravaged my system too. Sorry for the total over-share. Hang in there and feel free to contact me anytime :)

    1. Thank you Anne! I double checked and never got a facebook message from you. Would love to talk with you since it seems we unfortunately have a lot in common! Shoot me an E Mail when you get a chance!

    2. Hi Julie - this week marks the 20th year since my diagnosis of breast cancer! I'm a survivor. I was diagnosed at 32 and had never had kids. After chemo and radiation and a bunch of other ovarian issues (not cancer related) I got pregnant and had my daughter at age 34! it can be done so don't give up hope. My pregnancy was normal and my 17 year old daughter graduates this June.
      Just wanted to share. Good luck!

    3. Rhonda- that is great news- thank you for sharing!! God bless you and your family!! XOXO

  2. I was diagnosed with Infiltrating Breast Cancer at the age of 28 when I was breast feeding my 11 months old, special needs girl. Today, it seems like some stupid nightmare because I have survived long enough to forget it all. Let me check, when did it happen. Yeah! That was 18 years ago. I hope you get to kick the cancer butt and get your life back on track as well.

    1. I can't wait til this seems like just a stupid nightmare :) Thank you for the encouraging note!!!

  3. Hi Julie:
    Not sure if you remember me from college. Taylor Bray…now Taylor Jenkins after marriage. I wanted to let you know that I had to do Chemo treatments when I was 15 years old for 9 months for a disease called Polyarteritis Nodosa. It wasn't cancer but it was treated with the same drugs. Don't give up hope. I thought having kids was out of the question for me but now at 28, I am 19 weeks pregnant with our first baby. It is totally possible. We tried for about a year but it all worked out. Have you looked into freezing your some of your eggs to be on the safe side? Just curious. I am not sure how that would work with your treatments but that was something I wished the doctors would have told me about back then. If you have any questions, please don't hesitate to email me.

    Have been thinking about you and praying for you. You are such a fighter and your positive attitude and drive is the best medicine. I'll leave you with one of my favorite quotes that one of my doctors told me when I was 15 after I finished all of my treatments…

    "The race goes not to the swiftest but to he who endures."


    1. Hi Taylor! I definitely remember you! Thanks so much for the note and congratulations on your pregnancy!! That's awesome. I'm definitely holding out hope :) Yes I talked to the doctor about freezing eggs but they wanted to get my chemo started ASAP after I was diagnosed and didn't want to wait the 6 weeks or so that it would take to freeze the eggs.
      That is a great quote and I will remember it as I am struggling to get my last two chemo treatments on time!! Thanks again for the note, it really means so much to me!! XO Julie