Thursday, November 20, 2014

Platelets and Chemo Update

After three unsuccessful attempts to get chemo last week, I was finally able to get chemo on Tuesday. I didn't get chemo because my platelets came up though- I got chemo because my doctor trusts me to not do yard work, climb up a ladder to get Christmas decorations down, or go running in the dark. To quote her text message today- "I care about your organs and your brain" aka she doesn't want me to have internal bleeding from a fall or other forceful bruising. I was instructed to not "blow my nose too hard", to not shave my legs (sorry Brad!), to not chop food, and race to the ER if I start to bleed- even a little. Yay for my blood losing the ability to clot.

Because I love making graphs of data, here is what my platelets have been up to. It will give you a feel for the scale of what's been going on and how low they are right now.

Click to enlarge
I ended up having 15 days between cycles this last time instead of the prescribed seven-day gap. This morning (Thursday) I feel a tumor that has popped up overnight. I have the craziest cancer! Somehow I need to race through these last three treatments so we can move on to bigger and better things like getting my boobs chopped off and my chest radiated (hopefully turning me into a superhero in the process).

Please pray that I will be safe and not have any complications from my platelets being so low. Please pray that my platelets will be high enough to have the final three treatments on schedule. If I'm unable to get chemo next Tuesday, I will have to wait until the following Monday to try again with our family traveling for Thanksgiving. That would be no bueno!

On a separate note, I had a CT scan done last week due to some more chest pain, this time positional and very dull pain. My doctor wanted to make sure I didn't have a pulmonary embolism (a blockage in one of your arteries in your lung). It turned out that I didn't have a blockage- yay! The radiologist reported that my largest axillary (armpit) lymph node has decreased from 14mm to 8mm. So while it is still there, at least it is moving in the right direction. Doctors can not feel lymph nodes in my armpit when doing a manual inspection.

At this point, I think it is safe to say I will have either a partial response (defined as skin symptoms go away and tumors shrink more than 50%, my odds for survival would stay neutral, (I think? It's been awhile since I've read the research)) or a complete response (less likely, but if I did have it my odds for survival would improve dramatically, I believe in the neighborhood of 75% at 5 years). I'm so grateful that my breast has not grown over the course of chemo and that it has not stayed the same.

Now on to knocking out these last three treatments! Woohoo!

Monday, November 17, 2014

Suite Hope - Documentary


I'm on camera!
Last month, Jeanna Doyle (founder of Suite HOPE), came to my home and taught me how to look my best while undergoing chemotherapy treatments. You can read about it here. At the end of the session I was so impressed with her, the organization she has founded, and her mission, that I asked her to let me know if there was ever anything I could do to help her.

Jeanna is in the process of creating a documentary to bring awareness about appearance-related changes women go through during cancer treatments and to educate the public about oncology estheticians that train to assist women with these changes. Part of the documentary will contain interviews from cancer patients to understand their perspective and learn how Suite HOPE has helped.

When Jeanna asked if I would be interested in participating, I answered with a resounding "Yes!" As a little girl I dreamt of being on the big screen so a day of filming in a studio was a dream come true for me! To prepare, Jeanna had a creative director call and give me a pre-interview to help formulate good questions and answers. I thought through my answers a bit beforehand so I wouldn't (hopefully) be a total bumbling idiot once I arrived.

My mom and I drove down south of downtown to Stewart Cohen's studios. Check out his work here (pretty incredible, right?). I'm not going to lie, it was a little sketch-mcgee down there. I'm not sure if it made me feel better or worse that there was a police officer in the parking lot. I suppose it is where you picture a super artsy studio to be though.
Thank you Police Officer
One of the piles of awards
Stewart has won a bajillion awards. There were piles of them everywhere. If you went to his website site you can understand why. You would expect someone like that to have a certain air about them but Stewart was just about as down to earth as you can get. At one point he even made me tea! He made me feel completely comfortable. You could tell he could talk to just about anyone and make them feel like the most interesting person in the world. That probably is a good skill to have when you film people all day every day.

Getting your makeup done never gets old!
The team wanted some b-roll (whatever that is...) of Jeanna doing my makeup so I got my make up done again - yay! It is crazy how good she is:
With and without makeup
I think this shows you how sick I look without makeup (above) but how completely normal I look with hair and makeup on (below):
With and without the wig
During the interview I had an opportunity to talk about my story of being pregnant, getting cancer, and what life is like now going through treatments. I talked about what IBC is and how it is misdiagnosed 9 out of 10 times. I also was able to share how my faith has been the driving factor in being able to handle the diagnosis. We also discussed how fleeting beauty is and how your self-worth and confidence must be found in something more lasting than your outward appearance. As I've learned, beauty can be taken away in an instant.
The crew working
Overall, it was a fabulous experience. If I had more talent in this area, I would love to do it more often. It is so much fun! I'm so thankful Jeanna invited me to participate and I can't wait to see the finished product!
Jeanna - the makeup master!


Wednesday, November 12, 2014

Halloween

This is the first year that Noah has been semi-aware of Halloween. His school had a parade of costumes so we had to find him something to be for Halloween. I went the week-of to find something and the Target costumes were pretty picked over by that point. My friend (who was visiting from out-of-town) and I found an Elmo costume because Noah is OBSESSED with Elmo right now. However, once we got the costume home and tried it on, we found Noah didn't really fit in the costume (it was skin tight - picture Britney Spears' red leather outfit below) and he didn't want to put on the head- he just wanted to hug the head (since it looked like elmo).
On Halloween day I went back to Target and by then the costumes were REALLY picked over. I was searching the aisle with all the other delinquent parents that waited until the day-of to find their kid something to wear. I found a lion costume that looked like it might fit better. 
This actually turned out to be a really good costume since he knows "what a lion says". This is him roaring. Cute, right?
video
A friend sent David this monster sleeper in a Halloween-themed care package so David was a monster for half the day (being a monster is wonderfully out of character for him):

Since David is totally unaware of Halloween I wasn't planning on spending money on a costume. My friend that was in town insisted that he needed one and bought him this pumpkin costume. I have to admit, it too is pretty stinkin' cute:
Also in the Halloween care package was a pumpkin carving kit. I really wanted to carve a pumpkin this year for some reason. I bought one pumpkin mid-October but it rotted in a couple days. Halloween day rolled around and I found a new pumpkin and carved this baby up not minutes before the first trick-or-treaters came by. Better late than never!
For anyone that is under the delusion that we have our crap together, here's a video to set the record straight:
video
Not too much else to say about Halloween 2014. Until next year folks!

Sunday, November 9, 2014

Praises + Prayers (11/9)

Update: I was unable to get chemo this morning (11/10) due to my platelets being 54 (needs to be >100). They have scheduled me to try again at the end of the week on Friday. Please pray that my numbers would cooperate and that I could get thru these last chemo rounds as quickly as possible. I need the chemo to be given as densely as possible so the cancer does not continue to mutate, become resistant, and continue to grow.

I haven't done a Praises/Prayers list in a while as things have been hitting a bit of a routine. As we approach some of the next steps, here is an updated list of things to pray for. Thank you to all of the prayer warriors that are pleading with God for my healing. I look forward to celebrating the miracles with you at David's 5th birthday party!

Praises
+ I've had an incredible amount of joy the last few months as the shock of the diagnosis has worn off and, as I mentioned, the routine of weekly chemo treatments has set in. I find my days pass by much too quickly and I relish each week that I feel healthy and strong. I take a lot of joy in my kids in the fun and cuddly stages that they are each in. I'm so thankful that instead of worrying about what the future might hold, I am able to focus on and celebrate each day, hour, and minute I have to live.

+ Over the past four months I have experienced essentially no symptoms from chemotherapy. I don't think many women taking the same type and amount of chemo I am can say that. My hair fell out, I get more fatigued than I used to, but I have had no nausea, no nueropathy, and no sleepless nights (except those from feeding a baby). The fatigue I have felt may be attributed in part to having two small children that require a teeny bit of energy and attention. :-)

+ I feel so supported and loved. The countless cards, flowers, and gifts, often times from complete strangers, have been a wonderful encouragement to me. I'm blown away by the number of people that have taken an active interest in our lives and have offered whatever they can to help us conquer this cancer. I'm thankful for the dozens of meals we have received and even though I've felt good, not worrying about cooking over the last four months has been amazing.

+ I'm thankful for the opportunity to share my faith with people that I might have not otherwise encountered. This trial in my life has given me a platform with which to glorify God. I continue to pray that He would be more glorified in my life than in my death. I hope you will pray that with me.

Prayers
+ This week I'm playing musical chairs with some of my physicians at MD Anderson. I've requested to have some IBC specialists do my surgery and radiation. Please pray that God would guide the decisions on their side as they evaluate if that is possible or even helpful in my case.

+ Another logistical piece is finding housing for our family in Houston for radiation. I have a list of churches/organizations that offer free or subsidized short-term housing near MDA for people in similar situations. Please pray that God would open doors and that it would be easy to find a good place with a short commute (since I'm going there twice a day during high traffic times).

+ We only have four weeks left of chemo which sort of sounds like a good thing but I'm still pretty nervous that it won't be enough. I still feel tumors in my breast. I'm praying that they are just tumor beds (scar tissue from dead cancer cells). The lymph nodes that we could previously feel have all shrunk (praise!). I know that survival rates drop dramatically without a complete response. Please continue to pray that every single cancerous cell would be gone at the time of my surgery.

+ And finally, speaking of surgery, I would appreciate prayers that it would go smoothly and that I would handle the pain well (both emotional and physical pain). I'm nervous about how I will mentally handle losing my breasts. I'm trying to focus more on "I'm getting rid of the cancer" and less on "I'm losing my breasts" but I've heard from other IBC folks that it is painful to look in the mirror and see Frankenstein. This will be my first real major surgery. I'm nervous about the recovery, especially with two kids to continue taking care of. Also, prayers for the timing of the surgery. We will need to wait until my numbers are up and it is safe but I also have a bias towards it happening sooner rather than later. I've seen the pace at which my cancer grows when not on chemo and if anything is left after chemo, I'm very nervous to watch it grow again. If chemo goes as scheduled, 3 weeks out would make the surgery the week of Christmas, 4 weeks out would make it the week after Christmas. Prayers for the timing to work out well.

Again, thank you so much for taking the time to pray for me. I know we serve a God that is more than powerful enough to heal me on this side of Heaven. 

Friday, November 7, 2014

Dallas Stars Game


Over the past month, I've had the opportunity to connect with two inspiring young women that are currently surviving breast cancer. The first is Julie - she is 29 and had triple negative IBC (like me!). She has been through all the treatments (even got a pCR!) and is on the other side right now with No Evidence of Disease.

Around the same time I met Julie, I also had the opportunity to spend time with Shari. She was diagnosed the same time I was with Stage 4 breast cancer in her liver and bones. She also recently had a baby (her daughter is 9 months old and is adorable!). A social worker at UT Southwestern connected us because of our advanced cancers and both of us being young moms.

Julie works for the Dallas Stars and has had an opportunity to connect with the General Manager's wife, Bekki, as Bekki also has breast cancer. She was diagnosed 12 years ago but unfortunately it has come back in the last few years in her liver and bone (same diagnosis as Shari). 

Bekki organized a breast cancer event in one of the Star's suites last week and Julie was able to score me a couple tickets to the game! It was ah-mazing!!! I took my new friend Shari thinking she would probably get the most out of the event. A big thank you to my friend Lindsey for watching Shari's baby for the evening! Lindsey and I got home close to midnight and she had to be up at 4:45am to teach 20 2nd graders the next day- crazy!  My dad has a coworker that lives in a condo across the street from the arena and let us valet park in his building for free- how la-te-da is that? Thank you Dave!

I've never been to a box at the Stars, but I've decided that's really the only way to see an ice hockey game. :-) I was mostly excited about the food/desserts/view/cushy seats but it turned out the people we got to meet and talk with were definitely the best part.
Platinum level box suite!
We were able to hang out with the Dallas Stars Coach's, GM's, and President/CEO's wives pretty much the whole night. They were all incredible women! A few of them even were offering to watch Shari's baby when she has chemo! How nice is that??

We also got to meet Dee Simmons (and her daughter) of the UT Southwestern Simmons Cancer Clinic! She had breast cancer 20+ years ago and her family donated the money to UT Southwestern for my clinic. She was just as fabulous as you might expect!
Dee & her daughter D'Andra
There was an uncharacteristically young crowd for breast cancer folks and a group of them meet regularly for unofficial emotional support. I'm excited about meeting up with other young women with breast cancer.

Overall the night was stinkin' fantastic. Shari and I felt like we got the royal treatment. It was a huge encouragement to both of us. Thank you Bekki for organizing the event and making us feel so special. <3
Bekki and Shari


Wednesday, November 5, 2014

Three Thoughts


1. Today I thought it would be a good idea to spread bug killer in my yard while it was raining outside. It was going very well until I slipped on a muddy slope and caught myself on the AC unit outside. I'm so thankful I didn't hit my head. I'm so nervous about "brain bleed"...whatever that is.

Normally if this happens you put a band aid on it and move along on your merry little way. When you are a million rounds into chemo it becomes more of a "thing". So my doctor wants me to take twice a day antibiotics and come in for a tetanus shot, just to be on the safe side. You'd hate for me to fighting this big bad cancer and then die of tetanus or something else entirely preventable. So there's that...

2. I braved the social security office today. I didn't wear any make up, wore just a ball cap, and brought the baby. Com'n who wouldn't want to give me some Obama money?? Turned out I picked the perfect time to go - 2:30pm, on a Tuesday, when it was raining. There was no one there! I got super fast service and the folks were super helpful. Apparently when you have a really bad disease and you are clearly going to get approved for disability, they fast track you through the process. It is something called Compassionate Allowances. We'll see how long the process takes, but yay for potentially free disability monies and being on the list of really bad diseases that get quick service...wait, um...

3. I think multiple times a day how awesome my life is. I love my husband, my kids, my home, my friends, my parents, even my in-laws. Life is so good right now. This is a really fun and special season in my life. I'm really enjoying getting this extra long maternity leave with David as he starts to come alive smiling and giggling. And I would normally say, "Life is good...except for the cancer part." But that really isn't true either. Life is good, because of the cancer part. It makes all the other parts come alive and become that much more special. I cherish all the good parts of my life because I see how quickly it could all vanish. I have connected with so many people over this trial in my life. People I would have never known or them have a reason to know me. I have seen the best in my friends and family. I feel so incredibly loved and beautiful- more so than any other time in my life. So yeah, I have this "terrible cancer" but really in the day-to-day, I couldn't be more content.

IBC Documentary

Diana House was a nurse in NYC that was diagnosed with Inflammatory Breast Cancer and died two years after her diagnosis. She was passionate about IBC education and made this short documentary on IBC. If you have a half hour it explains IBC really well. Watch it and tell someone about IBC- you may save someone's life someday.

The IBC Project

Tuesday, November 4, 2014

Pinktober


The pretty pink ribbon
For the first time in my life, I've paid direct attention to October's Breast Cancer Awareness Month. It has taken on a whole new meaning for me now that I actually have breast cancer. You would think this month would be extremely encouraging to women with breast cancer, and I think for many women it is a month that they feel very special and supported. I know my friends and family have made me feel very loved this month. However, since becoming a part of a network of woman dying of the disease - ones that are undergoing the most aggressive treatments possible - women that will suffer for their entire lifetimes until they pass - my eyes have been opened to the dark side of that pretty pink ribbon.

The Awesome

Noah's School

Let's start with the good stuff of this month. Noah's school had a breast cancer awareness day which I thought was nice. It turns out they don't make pink shirts for boys in toddler size, but I hated to send the one kid in the school whose mom actually has cancer without a support shirt! So Brad had the idea of making a shirt. I picked up a $3 shirt from wal-mart and some neon pink puff paint. I looked at the materials thinking "this is not going to end well...there is no way this is going to turn out okay." We debated about writing some catchy phrases on the shirt ("Give to research: help my mom live to see me in Kindergarten", or "Help me find a cure"), but they all sounded just a teensy bit...depressing, at least for the toddler class.  So at midnight the night before we settled on this:

Daily Gifts

Another fun story from the month has to do with my friend Jamie (mentioned before here) who had Stage 3 breast cancer seven years ago at the young age of 25. She has been extremely supportive through this journey and I'm so thankful for God putting her in my life literally hours before and after my diagnosis. God is so cool. 

Every day in October either her or one of her "helpers" drove to my house and dropped off a pink gift wrapped with an uplifting verse. The gifts ranged from pink gum to a sign she had painted to candy to pink ear plugs. It has been a blast looking out my front door each day and finding a treat! I can't believe she has been able to find that many things that are pink! Thank you Jamie for the loving encouragement you are to me daily! <3 
Jamie = Incredible!!

Breast Cancer Funding

Breast cancer is one of the most funded diseases in the US- sweet! Some of you may have seen this infographic floating around:
Donations vs. Death
I remember seeing it earlier this year, before being diagnosed, and thinking it was dumb Americans give so much money to breast cancer when it has a really high survival rate. (You'll see below how that sentiment has changed.)

Many wonderful organizations and leaders have done a terrific job bringing breast cancer out of taboo status into common knowledge and raised a boatload of money over the years. Before being diagnosed, I had definitely heard of breast cancer, the Susan G. Komen organization, mastectomy, about how mammograms were important for detecting breast cancer, and things you could do to increase or lower your risk of getting it (aside: I don't do any of the things that increase your risk and I do all of the things that lower your risk). If I was born a generation ago, I would not have nearly this level of knowledge, and that is due to the tireless work of many women and men to increase breast cancer awareness- for them I am so very grateful!

The Not-so-awesome

Unfortunately, my newly found awareness of this month has not been all positive. There are many women out there that HATE when this month rolls around and want to throw up from even seeing a pink ribbon. I've just established that I personally have felt very loved and encouraged this month, and I appreciate the work organizations like Komen have done to raise awareness and public discourse around the disease.  Still, you can understand some of the reasons why Pink is an ironically depressing color for many women with the disease: 
[If you don't see a video on mobile devices...here's a link to "Pinkwashing for a Cure"]

I've seen a ton of articles come across my facebook feed this month from all my newly formed IBC contacts. These articles have articulated much better than a math-nerd/writing-illiterate like me ever could but I'm going to take a shot at summarizing the high (or rather low) points for you:
  • Awareness vs. Research - How many people do you know that have never heard of breast cancer? A large percentage of breast cancer donations go to "awareness" and not to research. The numbers I've heard are somewhere in the range of 11-20% of funds raised go to research. In spite of Susan G. Komen's tagline - "For the Cure" - only ~16% goes to research that would lead to finding a cure. Bummer, right? 
  • Research on Rare - So you take the fraction of money going to breast cancer research and then look at how much is being spent on "rare" cancers like mine - triple negative and inflammatory - and that fraction goes down to pennies on the dollar. 
    • I've been so incredibly disappointed to learn that after getting the "most funded disease in America" that treatments and survival rates for my type of BC have not statistically changed in the last 30 years due to lack of research dollars. In fact, I've learned that IBC does not have an ICD-9 code, the official system of assigning codes to diagnoses and procedures associated with hospital utilization in the United States. You know what that means? That we can't even track how many women actually have IBC. Try to get funding when you can't talk about any hard numbers, only rough estimates. 
    • I was talking with my post-doc friend at MDA and she said her colleagues this year had excellent research projects for triple negative cancer, and every one of them got denied funding due to it being "too rare". If you look at this slide she sent me (below), it actually is the 5th largest type of cancer killing women in the US. So even if it is rare from a standpoint of people getting it, it isn't so rare from a people-dying-from-it perspective. Same with IBC: it makes up 2-5% of breast cancer cases but makes up 10% of the deaths (a disproportionately higher amount). 
  • Profiting off the Pink - The documentary Pink Ribbon, Inc. describes how corporations are leveraging the emotional connection made with the consumer to increase sales via the lovely pink ribbon. You can imagine someone dying of metastatic breast cancer not loving the idea of someone profiting off their disease, right? 
    • Think Before You Pink tells readers to follow the pink ribbon to the funding. Make sure the product or company clearly says where the money is going (or that money is actually going somewhere), how much of the cost is going to the non-profit, and make sure there isn't a cap on the donation amount. If there is a cap then that probably means your one more purchase won't actually increase how much they give. 
  • Metastatic - When was the last time you saw someone in an interview, promotion, marketing campaign that had Stage 4 breast cancer? Someone for which "surviving" and "finding a cure" are now out of the question. Often times the awareness campaigns celebrate the survivors and abandon the women actually dying of breast cancer. Dying of breast cancer is not pretty. Treatments and side effects are not pretty. The frankenboobs I will soon have will not be lovely and feminine. I've taken marketing classes, so I get why they decide to use happy, peppy survivors and not depressed, dying women; but it still doesn't seem like the ideal way of treating those struggling to stay alive another month, week, or day for their families. :-(  
    • A recent example here is the Joan Lunden article this month on the cover of People Magazine.  On the adorable side, Noah looks at this magazine and says "Mama!".  However, the tagline of the article - "I will survive this" - is frustrating for me.  Of COURSE you're going to survive this - you have one of the kinds with a 90% survival rate! It would be a lot more 'courageous' for PEOPLE to make a metastatic woman (like this one or this one or this one) their cover instead of the photogenic Lunden.
    Joan Lunden
  • Miscellaneous Grievances - There are a handful of other crimes that I find more minor but have been pointed out to me over the last month, they include:
    • So called "pink products" that actually include chemical carcinogens that have been proven to cause breast cancer. A lot of these are lotions, makeups, perfumes but my favorite has to be the pink drill bits used for mining:
"Stop fracking with our health"
    • I had always thought of the "save the ta-tas" shirts as being kind of cute and a way to be relevant to the younger culture. But if you think about it for a second, I'm about to lose my "ta-tas" to hopefully save my life. Something seems backwards about saying save the ta-tas.
    Save the tatas or save the woman?
    • Sexualizing breast cancer has been a fun one to read about. Check out Nascar's shirt this year to "check your headlights" or the Hooter's campaign or the "Save Second Base" shirts. Part of me likes the good natured humor and knows that these people probably started with their hearts in the right place, wanting to raise money for BC; however, you can see how for someone feeling not the least bit sexy sans hair and boobs, this does not go over well.
Second base
Hooters
    Nascar
Whew! I think that pretty much covers it. I definitely don't like to be all complainy-complainy but I figured one not-so-short educational post wouldn't hurt. 

What should you do instead?
A few people have asked where they should donate funds if they want to help out. I personally am a fan of the IBC Network. 100% of their money goes to IBC research. I've met the founder and driving force behind the organization, Terry Arnold, a fellow triple negative IBCer. She has been able to raise over $330K in the first three years of the organization's existence. She works tireless hours as a volunteer so every penny can actually go to "finding a cure". 


I choose to still see the positive-support-side of the pink ribbon. I know my friends and family that buy pink products are doing it because they love me, support me, and want to see me get well. I never want to get to the point where the ribbon makes me want to "throw up" or I "can't wait for October to be over," but I do want to be more informed and make sure those around me realize the pink ribbon is not as straightforward as it seems.