Mastectomy Study

My surgeon, Dr. Bedrosian, authored a study that was published yesterday afternoon (in The Journal of the National Cancer Institute) proving that women like me who have a double mastectomy improve their life expectancy.  Here is the article from the Houston Chronicle, Study: Preventive mastectomy doesn’t benefit most.  Of course the Chronicle would focus on the fact that the study shows a double mastectomy does not improve life expectancy in women over the age of 60; but for a subset - ME!!! - it does improve life expectancy.  Scroll to the bottom of the article and you can see a quote from me.  I've decided to have a double mastectomy because of how long I'm going to live, 40+ years versus another 10, and I do not want to go through this again!

Triathlon Training

There are only 46 days, 43 training days, left until the triathlon on April 11th and I am in terrible shape.  I was only able to run for 10 minutes on the treadmill today, at a pace of 10.43 miles/minute.  That is horrible!!  At this pace I'm going to have to drop out of the race, or quit while doing the race, and I've NEVER quit a race.  The only race I've ever signed up for and not started was due to a fever, and the fact that I had a more important race the next week and wanted to save my strength for that race.  I'm going to have to train a lot harder if I want to finish with any type of respectable time.  Silvia gave me a lecture yesterday about not allowing myself to quit, but why would I do that?  Quitting is not part of my vocabulary.  Even though I did try to drop out of the Couples Tri last year when it was 90+ degrees at 9 am, I ended up finishing because I couldn't figure out how to drop out.  Cody did have a good point I did receive chemo less than 24 hours ago, and that might have something to do with my crappy performance.  Never the less I am determined to do finish.  I just need to work on strengthening exercises at the start of the week and move onto endurance training as the week progresses and the chemo makes its way out of my system.

We got about an inch today, the first snow we have had all year. 

Our front yard was cool enough for the snow to stick, it should be gone this evening before the temp drops below freezing.

Nike Commercial

I've seen this commercial for Nike a couple of times while - surprise - watching the Olympics and I really like it.



Not sure how I'd get them to do it, but there needs to be a human chain of me somewhere...

A Great Weekend

This has been a really great weekend; my neighbors sent me flowers, I was able to sleep all night last night (no hot flashes!!), and my brother, Max, came to visit all the way from snowy Washington D.C.  It was really great to see Max again, I haven't seen him since September 2009 and it was nice to spend time with him.  Cody really enjoyed having another male around to commiserate with as well.  On Friday I had lunch with the Pink Ribbon Cowgirls, a group of women who were diagnosed with breast cancer before the age of 40.  It was nice to meet people in my situation and to hang out with a group who knows what it is like to have breast cancer.  I really liked all of them, and am going to start going to more of their activities.  They asked me to join Team Survivor, a triathlon training group for survivors of cancer, and I was also asked to be a model at the annual Graphics Art Bra show in May.  I'm still debating being a model, since I'll be bald and not feeling great from chemo, but they all were excited and said they would help get me in the mood if need be.  The Art Bra show sounds like a lot of fun and I'm definitely going to attend with Cody.  For the show members of the community and the Breast Cancer Resource Center (BCRC) design bras that are then modeled, and sold to raise money, at the Art Bra show.  The bras each have a theme and tend to be whimsical.  Last year one bra was titled "Silicon Valley" and had computer parts sew onto it, another was a group of three bras title mighty bra (or Mardi Gras) and were decorated like a parade float.  It is a really interesting event and is the biggest fund raiser of the year for BCRC, which Pink Ribbon Cowgirls is a part of.  Since I am not the creative type, trust me I'm awful, and I want to enter a bra I'm putting out a call to all of you to send in ideas.  If you want to help with a bra let me know, and please don't get mad if I don't use your idea.  If I get a lot of ideas I'll figure out how to put them up on the blog for a vote.  The deadline for turning in the bras is April 16th.  That should be plenty of time for the creative ones, you know who you are, in the audience to get those juices flowing. 
Cody and I are off to Houston for my 8th round of chemo on Monday.  I can't believe how quickly time is going by.  Pretty soon I'll be done with chemo - June 1st - and on to my next round of treatment. 

Note from my Dad

The following is an excerpt of a note that I received from my dad. He did some research and figured out why there are no 5-year survivors, yet.

"I did a quick literature search yesterday and found one reason why there may not be a record of many Triple-Negative Breast Cancer (TNBC) survivors yet. I could not even find a reference for TNBC in the entire AAFP (American Academy of Family Physicians) national library. There were a few articles in the TMA (Texas Medical Association) library and about 499 in the National Library of Medicine, of which only a handful dealt with survivors (they are out there). TNBC was recognized as a subtype between 2004 and 2007, depending on the institution. The studies aren't old enough to yield any reliable statistics. Retrospective studies are unreliable, because as soon as it was identified as a subtype, therapy for this cancer rapidly changed and became more aggressive with different chemotherapy, radiotherapy and surgical approaches. The jury is still out. It is a tougher cancer to treat, but in my opinion, in 5 years Rachel will be a mentor for some other unfortunate soul.

Now is not the time to be pessimistic. Since it has been identified as TNBC, now is the time to be glad that this didn't happen 5 years ago. I for one, am optimistic that it was identified early and is being treated appropriately."

Thanks for the insight Dad!

One more Hat

This has is from my cousin Jennifer and her husband Mike who live in the UK.  The hat has a 2012 London hat celebrating the upcoming Summer Olympics in London.  I bet I'm the only person in Austin with a London Olympics hat :)

RAD News and Chemo Side Effects

So I mispoke last week when I said I was done with the RAD001. I'm still on it for another 5 weeks, until I finish the Taxol. Ok. I also saw my doctor yesterday and she was very excited. "Did we put a clip in this (the tumor)? If not, Dr. Bedrosian, is going to kill me!" Dr. Gonzales was really animated over the fact that she can no longer feel my tumor in my breast and my lymph nodes are no longer swollen to the touch. This does not mean that the cancer has completely gone away, but it is on the run. They have found that at least 5% of women with triple negative breast cancer experience GROWTH in the tumor while undergoing Paciltaxol only. This sub-type of breast cancer is so aggressive that its cells block the chemo from entering and render the treatments useless. Another reason I'm so excited to be part of this study, and lucky enough to receive the study drug. Cody and I were in a great mood yesterday and are happy that everything that we've been doing has been working.

One of the side effects of chemo is C.I.M. or Chemically Induced Menopause. The chemotherapy drugs interfere with the bodies ability to produce estrogen which can cause menopause in pre-menopausal women. This condition can reverse once the chemo is stopped, usually takes about a year to get back on a normal cycle. What does this mean? FUN! I’m starting to experience this wonderful “change of life” and I don’t like it. The good part is no period, but the bad part – hot flashes. Last night they were not only hot flashes, they were hot then cold then hot flashes. I thought I was dying. I’ve never sweated so much in my life! I even had dreams that I died of a fever. It was insane. Cody said I was really hot, and I’ve never been hot before. It will be interesting to see if I get all of the symptoms that normal menopause brings, or if I only get the special ones that are really annoying. Chemo Brain is another side effect that I’m having, and it is only made worse by my families notoriously bad memory. This one is annoying but tolerable. I try and write stuff down but some of the things I forget are not so easy to remember – like if I called and talked to someone. Yes I forget that I’ve spoken to people, so I call them again…and feel like a moron. The conversations are vaguely familiar, yet I don’t recall having it. Déjà vu. My hair has stopped falling out and is starting to grown back in little patches on the back of my head and where my bangs should be. So I’m going to have to get it buzzed again. I look bizarre enough as it is.

Valentine's Cookies

I made cookies today for Cody for Valentine's Day.  I need to work on my decorating skills...

Hats

Here, finally, are photos of all of the wonderful hats that I received. Thank you to everyone for helping me keep my head warm and covered.

Good-bye RAD001, I'm a lucky 1%er

Monday was my last day to take the study drug RAD001 (aka Afinitor by Novartis Oncology). I am still considered “on” the clinical trial until all of my chemotherapy has been completed and I have been cleared for surgery; but I will no longer receive any drugs out of the ordinary for my stage and type of cancer. It is bittersweet ending my study drug, Cody and I have such hope that it will help. Yesterday I met another triple-negative patient in the waiting area who was 39 and her mother died of breast cancer at 33. She was searching for a mentor, someone who was a 5-year survivor of triple-negative breast cancer and currently in their 30’s or 40’s. They have been looking for a mentor for her since November and can not find one. This means that either there are no five year survivors in their 30’s or 40’s, or it means none of them want to be mentors. Yesterday on the way home Cody said that this was scary. This is the first time that I’ve heard him use that word. Let’s hope that the study drug did what it was supposed to do and made the cancer cells more receptive to the chemotherapy drugs.

Friday I received a phone call with my genetic test results – they are negative. So I am one of the lucky people who got cancer, and they have no idea why. I’m going to call myself one of the lucky 1%ers (7% of women diagnosed with breast cancer in a given year are under the age of 40, and less than 1% of those women have no genetic mutation). I’m sure it is an even smaller group if you add in my triple-negative status but that gets way too depressing. What my results mean if you are my cousin – you do not have a cousin with a BRCA 1 or BRCA 2 genetic mutation. Your risk of breast cancer does go up, so say as high as 40% - 60% above the general population, and it would probably be a good idea to get a mammogram early to develop a base line; but I would talk to your doctor about the issue. Please make sure that your doctor is aware that I was diagnosed at 33 with Stage II, T1N1M0, triple-negative breast cancer. Your children should also be aware that they have a relative diagnosed with triple-negative breast cancer at age 33. Their doctor should be able to help them make the decision on what to do with this information when they are older. Who knows, by that time one of the studies that I did on early detection may be the norm for testing :)

Today I’m going to rest and take pictures of the hats. I hope to post them tomorrow.

Fever and the ER

Yesterday morning I woke up with a fever of 99.5. Not a big deal if I was not on chemotherapy which weakens the immune system. Dr. Gonzales told me that a person on chemo with a temperature of 100 is the equivalent of a healthy adult having a temperature of 103. Needless to say the higher that normal temperature concerned me so around noon I took my temperature again, it was 100.5 and moving in the wrong direction. It was time to go to the ER and repeat my mantra for the triage nurse.

I have breast cancer.

I’m on chemotherapy.

I have a fever.

They immediately took me back to the triage room and hooked me up to the little blue guy – the machine that takes your blood pressure, pulse and temperature – and moved me to my own room. Private rooms in the ER are reserved for special people, in fact mine was one of 4 out of 25 “rooms” that was private with its own door and ventilation system. So they either thought that I was highly contagious, or they didn’t want me catching anything from other patients; I think they didn’t want me to catch anything. The room I was in was next to the ambulance entrance, and I kept the door open, so I got to see all of the ambulance runs. All of them were women 70+ coming in with chest pain, or something else. I saw one trauma patient, in the four hours I was there, and one really crazy person handcuffed to the bed and escorted by troopers. The crazy lady kept screaming, “Get me outta here, I want to leave. Get me outta here, I want to leave.” I do not see how people work in that environment, it was insane! It made me appreciate the work that dad did for so long – congratulations dad, you survived the ER. I met with the ER doc, Dr. Mills (no relation to my Dr. Mills), and he was your typical no nonsense ER doctor. He was very nice and very thorough. I had a small abscess on my panty line from an ingrown hair, he did not think it looked good, and wanted to lance it and take a culture for staph. Now before you start to think that we live like pigs, how else would we be exposed to staph, you have to know that staph is present on all of our bodies all of the time. Everyone can get a staph infection, and those with compromised immune systems tend to get them more that others because it is easy for the bacteria to get into the pores and start growing like grandma’s butter beans. The nurse tried taking some blood for my CBC, and two collapsed veins later she had enough for the test. OUCH! Little did I know that this was just the start of me gaining my new title “Princess Pincushion.”

I was stuck for the blood, stuck for lidocaine, stuck to lance my abscess, stuck to start an IV only to have my vein roll before finally collapsing (that is now 3 collapsed veins in one day), and finally given a shot in the ass. Oh yea, the doctor was correct and I did have a staph infection. Normal people would have been given some antibiotics and sent home, but lucky me I get everything that modern medicine can throw at an infection. Not only will it kill any staph that even thinks about invading my body, it will kill the pesky sinus infection that I originally went to the ER to treat. In their attempt to give me enough antibiotics for a horse, the nurse tried to start an IV, leading to the dancing vein eventually collapsing with exhaustion. (If I didn’t know any better I would swear that vein was taking X.) Because my veins were not cooperating I could not take the antibiotics via IV, I instead had to take one of the drugs via IM, or more appropriately – they had to give me a shot in the ass. That turned out to be my most painful and humiliating moment so far. It hurt worse that any shot I have ever been given – ever! My muscles had the biggest cramp, and I could not solve it by stretching, it was so painful. It still is sore. Oh well. I’ve been stuffed full of four different kinds of antibiotics and my fever was gone this morning. I’m also feeling a lot better, but taking Dr. Mills advise I’m going to take it easy for a couple of days. He thinks that I’m doing too much, too fast. I feel like I’m being lazy. Today the sun finally came out – YEA SUN – so I’m going to get my 15 minutes of Vitamin D, then go inside, rest…and wait.

Here are photos of my pig.  I finally finished today.

$10,000.00 Day

I can say with certainty that I am one of the few people that I know that has managed to spend over $10,000.00 in one day, and received nothing in return - like a car. On December 30, 2009 my bill to the insurance company from MD Anderson was over $10K, my portion will end up being around $3,500. Unbelievable!! Not even diagnosed 2 months and my portion of the medical bill would already pay for our mortgage and taxes for two months. Now add up the bill from the crazy radiologist that I first saw, and I already owe over $4,000.00 in medical bills. No wonder people go bankrupt from medical bills! The crazy part is that we have good insurance. This year alone will end up costing a fortune. I can't imagine if we didn't have insurance.
Mom bought me a real ceramic piggy bank, some butterfly and fairy stencils, and some paint markers; so today I’m going to decorate my pig. I’ll post pictures later.

Slideshow - Trips from 2009

 

 

Scars and Germs - EEWWW!

Okay my rash is starting to get out of hand. I think it might be the steroids, but it is really annoying to have the soul of a teenage boy living in your skin - eww. Cody is worried, even though all of the literature says that the steroids combined with the chemotherapy can give you an acne like rash; so we are going to meet with Silvia today and find out if I need to see Dr. Gonzales. In my opinion I don't need to see her; but hey what do I know, I'm only the patient. The rash is annoying. It looks terrible so I have to cover my head. It is causing me to not sleep because I don't want to turn over wrong on my pillow, have one of the pus bubbles explode, and then get some sort of infection that leads to a scar. I scar really easily and scars have been my greatest fear since starting all of this, well that and infection from an outside source. I still have a very visible scar on my ankle from jumping a fence and landing on a Coke bottle at three. Dad did a nice job stitching me up, but the scar is still there 30 years later. So possibly having a scar on my face or neck from this rash is a possibility. It would be worse if I got an infection since my immune system is started to become more and more compromised on a weekly basis. Each week I wonder if this is my last week that I can comfortably go out in public without wearing some stupid mask. This weekend it was scary to be at the grocery store with kids running by me. What kind of germs are they spreading around? Which one of them has parents who don't believe in immunizations, which is another topic for another day, and are carrying some sort of deadly virus? Just thinking about it is enough to make me not want to leave the house! That and the ridiculously cold weather. Cody and I are off to MDA this morning, then home to Austin this evening after my chemo. I'll post some more pictures later this week. We are world travelers, not really world travelers, but we could probably find our way to the medical center in Houston blind folded.