Angelina

Hearing so much press on Angelina Jolie has really brought attention to breast cancer and the BRCA1 and BRCA2 genes this morning. It seems like in one day, she's gotten more attention than Christina Applegate and Giuliana Rancic combined (the previous celebrity faces of double mastectomies). I have to say I am so proud of her though. As a sex symbol, undergoing a bilateral mastectomy is a tough choice – I’m talking about Angelina, not me! I love how she said "I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity." Well – right, because you are going to be alive! Definitely more feminine and attractive than cancer taking your life. I’m just sayin. When you're told you have an 87% chance of getting breast cancer, you'd have to be dumber than Lindsay Lohan declining a plea deal if you didn't decide to get those body parts replaced with some silicone, before you have to go through cancer, chemo, and all the emotional trauma.

 

I’ve already had several people ask me more about the BRCA genes today. First of all, everyone has the BRCA1 and BRCA2 genes, which are tumor suppressors. The names BRCA1 and BRCA2 stand for BReast CAncer susceptibility gene 1, and BReast CAncer susceptibility gene 2. We all have ‘em. But what Angelina and I have (as well as about 5-8% of the population) is a mutation in the gene. Meaning these genes don’t suppress tumors like they are supposed to, especially in breasts and ovaries, so tumors are more likely to grow and become cancer.

 

What’s the difference between the two? The BRCA 2 gene mutation (that I have) means that I have an 84% chance of breast cancer and 27% chance of ovarian cancer by age 70. Ding! It got me at age 35. At age 36, the hysterectomy that I had will prevent the ovarian part. It also means I have a 12% of a second primary breast cancer within 5 years of the first. So, good thing I got the double mastectomy! In case that’s not enough excitement for one person, I also have a 7% chance of pancreatic cancer, and I’m at a higher risk for melanoma, uterine, and fallopian tube cancer – although they don't have exact numbers on those at this time. Well, at least I got rid of the uterine and fallopian tube risks. In men, BRCA2 mutations can cause male breast cancer, early onset prostate cancer, pancreatic cancer, testicular cancer, stomach cancer, and melanoma. My dad and granddad both had prostate cancer AND melanoma 3 times. Thankfully, my dad is alive and doing great! And thankfully, neither my brother nor sister inherited the gene mutation that I did.

 

The BRCA 1 mutation (that Angelina has) means she has up to an 87% chance of breast cancer, a 50% chance of ovarian cancer, and is at increased risk for cervical, uterine, pancreatic, and colon cancer. This gene mutation tends to show up sooner, causing cancers at a younger age. I’m so impressed that she was pro-active enough to get the prophylactic bilateral mastectomy. I hope she decides to do a hysterectomy and/or oophorectomy (removal of ovaries) too, especially since she lost her mom to ovarian cancer at such a young age (56).

 

Obviously such major surgery is a very personal decision. Even getting tested for the mutation in the gene is a pretty big deal. It can cost up to $3,000, although for us, insurance covered most of it, so it was only $400 out of pocket. Pretty crazy bill for just spitting mouthwash into a cup though. (Mine was not a blood test like they keep saying on tv today.) But just remember, even if you have BC in your family, it does not mean you have the gene – only 5-8% of people do. And even if you have the gene, it does not mean you will definitely get cancer. According to estimates of lifetime risk, about 12 percent of women in the general population will develop breast cancer sometime during their lives, compared with about 60 percent of women who have inherited a harmful mutation in BRCA1 or BRCA2. In other words, a woman who has inherited a harmful mutation in BRCA1 or BRCA2 is about five times more likely to develop breast cancer than a woman who does not have such a mutation.

 

"For any woman reading this, I hope it helps you to know you have options," Jolie said. "I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.” But for her, the decision ultimately came down to her kids. "I can tell my children that they don't need to fear they will lose me to breast cancer," she said. With a 1-year-old daughter at diagnosis, I can definitely relate to that. Deciding to do a double mastectomy and hysterectomy was a no-brainer for me, so that I have the best odds possible to be around for my daughter and husband.

 

I’m hoping Angelina will do the hysterectomy/oophorectomy next. You would think have 6 beautiful children is enough for her! And I hope reading this helped you become just a little bit more informed about your health and those you love.

A Pink Surprise!

Today was going to be just a regular day at MOPS (Mothers Of PreschoolerS), which is a moms group I go to that meets about twice a month at Wilshire Baptist. I did get a heads up that they might make an announcement about my recent 1-year ‘cancerversary’ milestone, but little did I know what they had in store! As I walked in, Stella said, “Look Mommy – pink balloons! Birthday party!” And I said, “Yes, honey, it must be someone’s birthday, that’s right!” But then I walked in to EVERYONE wearing pink, with more pink balloons, pink tablecloths, pink napkins, and pink plates. And there was a pink balloon tied to my chair….hmmm!

When it came time for announcements, they called me up to the front and gave me pink hydrangeas. They said everyone was wearing pink to support me and celebrate my milestone - I was speechless! When they asked me for an update, about all I could think to say to everyone (besides THANK YOU) was, "my oncologist says I am cancer free now" and "my hair has grown 4 inches!" I can’t even begin to describe how nice it is to have something positive to celebrate, after such a difficult year. I feel like I can actually move on with my life, and look towards the future. I feel like I might ACTUALLY be around to watch Stella grow up, and to be there for Ben. I take nothing for granted anymore! So, thank you to all my MOPS friends who made today so special – as Ben said, “that was really, really cool of them.” And sneaky too! :) Apparently an evite went out to everyone (but me) about wearing pink today. This group of ladies really knows how to show their support!

As a side note, I happened to be wearing a pink sweater today – but I wear pink a lot – my bridesmaids were pink, everyone at my baby shower wore pink, and I dress Stella in pink all the time. So, that was really nothing new – but had I known, I definitely would have showered this morning! Ha!

 

Last One!

Pre-surgery

Wednesday was my FINAL (6^th out of 6) surgery of the year. I cannot even describe how glad I am to have it behind me. I’ve had enough IVs, anesthesia, and procedures to last me a lifetime! This one was particularly tough, as it involved two surgeons and three procedures. I feel completely run over by a bus! I had a full hysterectomy – ovaries and all – to prevent ovarian, uterine, and fallopian tube cancer, which are all linked to the BRCA2 gene that I have, that caused my breast cancer. My surgeon said that despite the risks, she’s only had 6 or 7 patients who were BRCA positive at my age do this procedure in the last 10 years, as most believe that even after having breast cancer, they think having other cancers can’t happen to them. The risk is up to a 40% for these cancers, which is something I just didn’t want to take. I want to be around a long time for our 2 year old daughter and my wonderful husband! And if the cancer should come back, I want to know that I’ve done everything in my power to prevent it. I’m very grateful that it is a laparoscopic surgery now, which means a two-week recovery instead of six weeks, but it is still a pretty difficult one.

A lot of people have asked how I felt about having a hysterectomy, at my age and with one child.  This was much more painful (emotionally) than the bilateral mastectomy. I felt so blessed to have gotten to experience pregnancy and feel little Stella kicking and growing inside of me. Babies are such true miracles! But the only thing worse than NOT getting to experience that again would be to not be around for the one we are lucky enough to have. So this decision, however difficult, was a no brainer. We do have three frozen embryos, so that if we are lucky enough to find a gestational carrier, we do have a chance at having another child of our own. Or we may look into adoption in the future. But for now, and possibly forever, Ben and I are completely fulfilled with our family of three. There are many people out there who don't get to find their soul mate, or experience pregnancy and motherhood! We are forever grateful for what we have. 

So, that being said.....normally I bounce back pretty quickly from surgery, but this one was particularly tough. It’s two days later, and I got to come home last night from the hospital, but I’m still walking around hunched over like an old lady, due to the piercing pain in my abdomen. Ugh!! I also had the final phase of reconstruction done: nipple creation and tattooing – a body part that you kind of take for granted until it’s gone! I feel like I look a lot more normal now. The plastic surgeon also took a little fat from my thighs and moved it to the top of my chest, to help make it look more natural, since it was just skin and implants. All in all, everything went very smoothly and I’m happy with the results – but I feel pretty banged up (in multiple places) in the meantime. The hardest part is trying to not let Stella climb all over me – it was so fun seeing her after being in the hospital for two days, but she just isn’t quite old enough to understand how gentle she needs to be. We told her that Mommy has some owies, and showed her the bandages over my new scars. She said “hello kitty band-aid for Stella too?” so we gave her one for her tummy, and Mommy’s tummy too. She thinks it’s pretty cute that we now have matching hello kitty band-aids.

So for now, I’m super grateful for all the help from Ben, my mom, my dad and Nancy, and Stella’s favorite babysitters as I get through recovery. And I’m SO appreciative of all the texts, calls, and e-mails – the love and support I feel has been amazing! And so fun to have my surprise visits from Blaire, Ashley (from Virginia!), and Kim at the hospital! Even if I was pretty out of it.

I’m going to sign off for now and try to get some more rest. I’ve gotten a little food down today and taken my meds – so now it will just take time to get me through this. Thank you in advance to my most incredible friends who have offered to bring dinners – I sure don’t feel like walking down the hall, much less making dinner, and I’m more grateful than you know. I hope everyone has a wonderful weekend, and is doing something more fun than recovering in bed!

Cancer: 0, Alli: 1

I’m sitting at my LAST chemo treatment – hopefully forever! Because my port was so uncooperative last week, I had to get the IV in my arm again today – but that was ok with me! I can’t believe that after 5 months and 16 chemo treatments, this chapter is going to finally be OVER! To celebrate, I used real shampoo and conditioner on my hair this morning (instead of baby shampoo) – pretty exciting to have a half inch now! It will still take a while for my hair to get back to normal, so in the meantime please enjoy my exciting array of scarves and artificial hair. Ha! Extra special thanks to Ben for taking off work to be here with me today – getting confetti from the nurses, ringing the bell, and saying farewell to the oncology staff would not be the same without you!

This blog has been so therapeutic for me – I hope you all have learned a little more about what happens when someone goes through treatment for breast cancer, but more importantly, thank you for helping me create awareness for this terrible disease. No one should have to go through this, but if you do, the earlier you can catch it, the better. So, one more time – ladies, do those self exams, and go to the doctor immediately if you find anything suspicious! I so appreciate all of the love and support from each and every one of you – I truly could not have gotten through this process without you.

I will post updates when I have my next surgeries – I have two more to finish up reconstruction this year, and also to remove the port from my chest. I may even have my hysterectomy later this year, which is what the doctors want to do to reduce my risk of ovarian, uterine, and fallopian tube cancer, which I am at higher risk for because of my BRCA2 gene. I am in a place that whatever I have to do to fight and beat this, let’s do it in 2012 so we can move on to the next chapter of our lives. We do have 3 frozen embryos that are a chance for a sibling for Stella, but they would have to be carried by a gestational carrier. We will cross that bridge and make that decision at a later date. And for now, I will be on Tamoxifen for 5 years (1 pill daily), and come back for check-ups every 3 months for a while, then every 6 months, then every year. I’m so grateful for every minute and every day with my daughter, husband, family and friends – and I’m looking forward to getting back to our normal life without being at the hospital all the time!

Last but not least, on a patient’s last day of chemo here at Presby, the tradition is that the nurses all gather around and throw confetti, then you ring the bell on the counter while you read the poem. I will leave you with this:

Ring out
Ring this bell
Three times well
The toll to clearly say
My treatments are done
Its course has run
And I am on my way.

Nearly at the Finish Line

Ugghh…..so I’m sitting at my next-to-last chemo session, and just when I thought I could coast on through to the finish line, it’s another hurdle. The nurse accessed my port (meaning she stuck the metal hook needle through the rubber valve that’s implanted under the skin on my chest), and it hurt more than it ever had in the past. She said it was probably just scar tissue from accessing it 15 times in the same exact place. But the pain got so bad that it was going down my arm to my elbow. I started getting light headed, sweating, the color all drained out of my face, and I almost passed out. Good thing I was in a big comfy chair in the infusion room! So, the nurse talked to my oncologist and she said to start an IV to my arm, because something could have bumped my port and put it up against a nerve, or it might just be in the wrong position now, so we shouldn’t use it to give the harsh chemo drugs if it’s hurting so badly. Then of course my arm was not cooperating for the IV there, so she had to find another place for the IV in the inside of my elbow and stick me again, but having it there means I have to keep my arm straight the whole time I’m here today. Whatever it takes! The pain is starting to go away now, and of course I’ve found away to type on my laptop with my arms straight out and the computer sitting far away on my lap. But at least I’m now receiving my meds, and I can check one more chemo treatment off the list. YAY. I will also have to get another IV in my arm next week – but I do NOT care at this point – let’s do it, because that will be my LAST treatment!!! (It’s actually been quite dramatic in the infusion room today, with the lady next to me puking into a bag and not able to even sit up without moaning – they are sending her to be checked into the hospital. I guess there is always someone worse off than you, and always someone better.)

Speaking of that, it’s also a little scary to me that after next week, I will no longer be actively "fighting" anymore (i.e. receiving treatment). I’ve tried to stay positive and remember how much chemo has helped my chances that the cancer will not return. If there is one little breast cancer cell left anywhere in my body, hopefully the chemo is zapping it! But nothing is 100%. My oncologist (Dr. McIntyre) said that when this is over, I will have a 15-20% chance of recurrence. That’s almost as low as any women on the street (1 in 8). And the farther out I get from this – after 1 year, then 2 years, then 5 years especially, my chances are lower and lower that it will return – the bad cells will have most likely died. I will be put on Tamoxifin for 5 years (an estrogen blocker), which will help. I am still waiting to find out whether I’m a candidate for the vaccine trial. I am definitely a worrier and a planner, and I know that it will always be in the back of my mind, and that every little ache and pain will be a concern – is the cancer back? Has it spread to other organs? But I am going to do my best to remember that I have done everything in my power to prevent that, and I need to go forward, appreciating each and every day that I am given, and live life to the fullest. I am so grateful for my husband, daughter, family, and friends who have supported me so much during this process, I feel like I will never be able to repay you all. It is almost my turn to go back to the other side – the side where I get to feel better and help others going through difficult times, which is so much more fulfilling than being on the receiving end. I’m excited to see the finish line coming so soon, even though I know it’s just the beginning of a whole new race. Having this chapter behind me will be such a relief though!

Charlize Theron: before and after
she copied my hairdo

One last thought before I leave you: I heard through the grapevine that Charlize Theron saw my hair that's growing in, and cut hers so that she has my same hairdo! Isn't that so sweet of her? I searched online and it's true - she has copied me! Check it out.

And now for the quote of the day:
You won't realize the distance you've walked until you take a look around and realize how far you've been.

Have a good weekend everybody!

If Opportunity Doesn’t Knock, Build A Door

Hello from chemo! Yes, I’m wearing a wig for the second time ever. (The first time was at a lunch with a friend also going through BC treatment - we both wore our wigs to try them out!) My hair is actually starting to grow back now – there’s about a half of an inch of peach fuzz on my head! I wear a scarf to cover it up, but now it’s kind of weird b/c it’s embarrassing when the new hair peeks out on the sides. So which is it? Am I embarrassed to be bald, or to have hair? Argh! Today I couldn’t even find a scarf to match my outfit, so I decided to try looking “normal” (i.e. not like a cancer patient) and have hair. If a 20-month-old’s opinion counts, it’s a winner – she looked at me funny, then said “Mama! Hair!” and petted me on the head. So sweet!

Today is #12 (out of 16) – only 4 treatments left! I feel so close to the finish line! It’s so crowded here at the hospital today – every single chair is taken in both the big room and the small room. I found one last chair back in the tiny private room. There are only 2 chairs in here and the other lady is asleep with a big breast cancer blanket over her. I kind of like it back here though – I feel like a cancer VIP, ha! It’s been a crazy week, but I’m finally getting caught up so it’s kind of nice to just sit here in the quiet. Our A/C went out at the house on Tuesday, and it got up to 85! It was so hot, we were all melting. Thank you SO much to the Hoods for letting us bring the Parkey circus over to stay the night – dogs and all! Sometimes you don’t appreciate what you have until it’s gone (and I don’t mean health this time) – I sure am glad the A/C is fixed now and we can get back to normal. And Stella is so happy to be in the cool air at home with her Mimi right now!  

Yesterday Ben and I went to see Dr. Nemunaitis at the Mary Crowley Cancer Research Center. I feel so lucky to have him at my side throughout this process (that's Ben, not Dr. Nemunaitis!). At Mary Crowley, they do clinical trials for new drugs and vaccines, working hand in hand with Texas Oncology, which is the group my oncologist is part of at Presby. I don’t want to say too much yet, until we know whether I’m qualified, but there’s a chance I might be able to be part of a clinical trial for a new vaccine. Pretty exciting!! But we have to wait about another week to find out what my HLA type is. The study is only for people who have the two most common HLA (Human Leukocyte Antigen) types – which covers about 55% of the population. What’s an HLA? Yeah I had no idea either. The main function of HLAs is to recognize the cells of the body and to detect foreign cells that don’t belong. Matching HLA types is important for people who need transplants, and they also play a role in certain inherited diseases. If I qualify (by having the right HLA type), I will get a series of vaccines after I finish chemo. If I’ve lost you in my rambling, the main point is this: It could help prevent the cancer from coming back for me, as well as further the research for other breast cancer patients! They are still trying to determine the right dosage for this vaccine before they release it, so with each group of participants, they increase the dose, until people complain of too many side effects. I will take whatever I can get though to fight this, for me and for everyone else going through this journey. When it comes to gambling with your life, I really feel like there is no other choice than to give it 100% effort. And hopefully a clinical trial can be added to my regular treatment plan, we’ll see!

I will try to update more often, I promise! It always amazes me that people notice when I haven’t updated in a while. I’ll leave you with my quote of the day:

Only 4 more chemos left!

Haha just kidding. Can you tell what’s on my mind? Ok, seriously:

Anything worth having is worth fighting for.

Hope you all are having a great week!

It's the little things: Halfway there!

Today was chemo treatment number 8 out of 16 – half of them are now behind me! And to celebrate, one of my oldest (we’ve been friends for almost 25 years!) and dearest friends in the world was in town from Houston and went with me. Thank you Ting! I know it took effort to arrange for your mom and hubby to watch the boys – so thank you to them too. I now have 4 A/C (red devil) treatments behind me, as well as 4 Taxol treatments. Taxol seems to be an easier drug to tolerate, although the side effects are different. I’m losing eyelashes and eyebrows, and the ice is not much fun during treatment (which helps prevent neuropathy and my fingernails/toenails from lifting). Eight more of these to go! I’m so glad medical science has the anti-nausea meds and steroids figured out, which I receive along with the chemo, that help prevent side effects and keep me feeling ok for a couple of days. And I am back to my routine of getting a shot to boost my white blood cell count the day after each treatment, so that hopefully I won’t have to delay treatment again. Fingers crossed!

That’s about all I have today. I’m wiped out and going to try to get to bed early! I still can’t believe how generous everyone has been, bringing us so many delicious dinners. I can’t wait to pay it forward when I get through this and have friends and family that I can help out. Thank you to each and every one of you who has made our lives easier with these thoughtful gifts!

I am going to try to remember to end each entry now with a quote. Today’s is from my brother’s sweet friend Kelly (thank you so much for the package!): “Enjoy the little things, for one day you may look back and realize they were the big things.”  It’s so true. I think about this all the time when Stella is learning another new word for the day, when I see the smile on her face as she goes down a big slide for the first time, or when Ben comes home from work telling me what a great day he had. We never know how much time we’ll have on this earth….but I want to savor every moment.