Treatment Plan #5

Merry Christmas, Happy New Year, and happy anniversary today to me and my husband!  We had a great Christmas this year.  Last year Christmas got lost in the chaos and fear of the diagnosis, misdiagnosis, and starting chemo a mere five days prior.  This year we decorated the house inside and out, got a tree, and actually waited for Christmas to open all our gifts.  It was really nice and I think we both got some of that child-like Christmas giddiness.

Two days before Christmas I got good news in the form of scan results.  I say good news but it should have an asterisk by it.  The scan showed that the spots on my liver had shrunk significantly, the bones were stable and there was growth in the breast and lymph nodes. For weeks I have been watching and feeling new spots pop up on my breasts and lymph nodes so I knew those spots would show growth on my scan.  My main concerns were my liver and if there were any new metastases.  Since those areas were good news, I took this to be good news overall.

I met with my doctor the day after Christmas to figure out our new plan (treatment plan 5 since I started treatment in December 2012).  She wanted to keep me on my current regiment and just add another chemo but there was no protocol for doing that and if she did so she would be putting me at risk.  So unfortunately this means scrapping this plan and moving on to something new again.  Next Thursday I will start two new chemos; one is a pill and one is an infusion once every 21 days.  For some reason pills always cause less panic, as if a pill couldn’t do too much harm.

I’ve been pretty calm about this news and the changes that we will be making again.  I really love my doctor and trust that she is working in my best interest.  Of course, reality always hits at some point and that point was last night as I lay in bed with husband.  It hit suddenly, as reality often does, and I realized I am scared, possibly petrified.  It’s not just the new side effects I worry about which can last days, weeks, months but it is the actual infusion that I fear too.  You see, the first two times I got chemo I had an allergic reaction.  We aren’t talking runny nose, watery eyes, and sneezes type of allergy.  Nope.  I went code yellow, twice.   My stomach was on fire, my face felt hot and swollen, and I was seeing stars.  I didn’t pass out but I don’t recall much from the time I told the nurse I was seeing stars and my room filled with nurses, doctors, and pharmacists.  I know they acted quickly and I felt better almost instantly but the experience was still terrifying.  Every time I start a new drug I have this fear now.  This is my first hurdle to get over with a new treatment.

My second hurdle, of course, is the nausea days that will follow it.  These days can be the first 24 or 48 hours or they can start a full day or two after the infusion.  You just never know how your body will react.  I get my infusions on Thursday whenever possible that way I can try to make it through work on Friday and then hopefully deal with the worst of it on the weekend.

The third hurdle is the lasting side effects; these are the mouth sores, neuropathy, hand/foot syndrome, hair loss, etc.  So far, the worst of these for me is the mouth sores and taste changes.  It’s amazing how grumpy you get when you can’t eat properly or taste.

 

As always I am hoping this chemo won’t be too bad.  I’m hoping it allows me to feel like me and eat normally (with the exception of sushi and buffets and citrus) and most importantly I’m hoping it works on all of the cancer inside me.  I did ask Santa to make me cancer free in 2014 and I think I’ve been pretty good this year.

Did I mention 5 is my lucky number?  Yeah.  I've so got this one.

My magazine article!!!

Rutgers Cancer Institute of NJ - Cancer Connection Magazine

Normal

I'm sad today. I'm so sad. I miss having a normal life. I want to wake up each day and just go to work. I don't want to think about how I feel before deciding if I am well enough to make it to the office. I don't want to vomit. I don't want to feel like I'm going to pass out. I don't want to watch my gums recede from my teeth. I don't want to watch my hair fall out again.  I just want normal. I want the normal boring every day.
I want to go to the gym after work and not worry about germs.

Update

I know I haven't blogged in a while. I have a metaphorical stack of half written posts and posts yet to reach my fingers. I've just been too tired. I've had a bit of a rough go of it lately.
Here's what has been going on…

One Year & One Day

Yesterday on the one year anniversary of my diagnosis I decided to be brave and I did two things - I went back to that emergency room to see the doctor who diagnosed me and I did it without a wig or a scarf on.

One Year

Tomorrow will be one year since I was diagnosed with breast cancer.  I’m not sure how I feel about this.  How am I supposed to feel? I’m not going to celebrate; throw a “hooray I have cancer” party.  It feels wrong to not acknowledge the day though.

Say It Out Loud!

I do some of my best thinking alone in the car.  I love driving.  I could drive up and down the parkway (below the Driscoll Bridge) all day long just thinking and taking in the sights.  Have you ever really looked around you while driving on the parkway?  It is actually quite beautiful, especially now that it’s fall.  Vast blue skies and fall colored trees point you to your destination.  There are some beautiful sunsets on that road, you just have to keep your eyes open for them.

Many a blog post have been left on the road – thought and then forgotten once I exit the car. since I can’t type and drive safely I decided to record my thoughts with my phone. Ever have anyone tell you to practice a speech out loud?  Speak a mantra to your reflection in the mirror?  If you’re like me you thought that was a silly sentiment and you would feel foolish.  Saying it in your mind and saying it out loud can’t be any different?  The first time I hit record and then…silence.  I couldn’t say it.  I couldn’t speak out loud the thoughts in my head.  It was just too hard. What was easy to think got me choked up to say.  I practiced recording myself by yelling at the traffic around me. I talked to myself about being unable to talk to myself.  Finally I was able to begin speaking my thoughts.  They came out slowly, my voice gravelly from the tears I choked back.

Saying it out loud made it suddenly sound real.  The power of the spoken word. They were so right.

Cancer Causes Hugs

*
As I was standing in line at the hospital waiting to pay for my parking, the woman in front of me turns around with a big smile on her face and excitedly tells me, “this is my last time here, I am cancer free.”  Tears of happiness for her welled up in my eyes as I replied, “Oh my god, that is so great. Congratulations.”  We started talking about our situations and what we’ve gone through, both so young.  Me, ten months of chemo and a lifetime of treatment ahead.  Her,  a double mastectomy, radiation, chemotherapy.

Slide, Click, Slide. Don't forget to count.

I wake up Wednesday morning at 3 am and take my first pill.  At 6 am I wake up again and take my second pill and eat a light breakfast as instructed. By the time I finish, husband’s alarm is going off and I know further sleep will elude me. Today I have a liver biopsy and I’m a little nervous.  I’m not quite sure I believe the doctors when they say it will be no big deal.

A Bout Face

Sunday, September 15

Last night my derby team had a bout in Groton, CT. I was bench managing as I've been doing all this season. I still really miss bouting, though I know Sean is much happier with me on the bench not risking getting injured. I love being with my team. Win or lose we always have fun. The bout was a perfect distraction from the news I got on Friday afternoon. Yes, scan results were in. Dr. Tan called me (as I requested) and told me that while the tumors in my chest and lymph nodes had shrunk, I have a new spot in my liver and one of the existing spots grew a little bit. This means I'm off my current clinical trial and need to start over with a new treatment plan.

So far I haven't been able to make it past 16 weeks on a treatment plan and that scares the crap out of me. I know I still have options but I can't keep burning through them so quickly. The doctor said there are two clinical trials she can think of that I'm eligible for but she is going to confer with my other oncologist so they can look at all my options together. Tomorrow morning I meet with both of them to see where we go from here.

A new treatment plan means a whole new set of side effects, a new schedule. Nausea, mouth sores, hair loss? Who knows what the new treatment will bring. So far each new treatment has left me with a lasting gift and a daily pill to treat it. Trial 1: high blood pressure. Trial 2: hypothyroidism.  Sometimes I wonder if my body will just correct these "false diseases" when this is all over, but then I think "will this ever be over?" They don't have a cure for me.  At least not today.

Monday, September 16

So I met with Dr. Tan and Dr. Toppmeyer today (my oncologists).  They offered me a new phase 1 clinical trial.  I am actually really excited about it.  Phase 1 trials are a little scary but they are also the cutting edge of medicine.  These are the trials where there is no control group, those are phase 3, but the medication may not have been tested in humans before or may have had very little testing in humans.  See how this could be a bit scary?  On the flip side, unless there is something getting approved by the FDA any minute now, these clinical trials are my best bet of getting cured or at least getting this crap under control enough to live a long life.  I’m fairly certain that if there was a fabulous new drug getting FDA approval to cure stage IV triple negative breast cancer we would’ve heard about it.

I start my new treatment the first week in October.  Perhaps you are wondering why I would wait so long.  I don’t have a choice; there is a mandatory one month “wash” period after chemo.  All of the chemo drugs need to be out of my system before I can start a new treatment. I had assumed my new treatment would also be chemo plus a clinical trial drug like the others have been.  As far as I knew, the only treatments available for triple negative breast cancer are chemotherapies.  This new treatment is a targeted therapy instead of chemotherapy and will be daily pills. How exciting!  I’m really looking forward to being able to taste again and maybe growing a full head of hair. There is, of course, the usual long list of side effects and they’ve assured me it won’t be a walk in the park but it should be a lifestyle improvement.  I may even be able to get off of the blood pressure medication and thyroid medication! I’m excited about the break from chemo and the potential for a more normal lifestyle but really I have high hopes for this treatment.  It is so new and really has the potential to kick cancer’s ass.  I believe I will be the second breast cancer patient on this study at CINJ.

In the next few weeks I will have to do all of the pre-study testing; this includes blood work, EKG, echocardiogram, eye exam, general exam/physical, liver biopsy and on and on.  The biopsy on my liver tumor is a little daunting but they’ve assured me it is not a big deal.  As much as I don’t want to be poked (twice because I will need another one 3 weeks after starting the trial) it will be good to see what the pathology on those spot are.  Hopefully it will be the same as my breast biopsy.  I’ve agreed to let them send some of the new samples out for genetic testing and whatever other medical research they can use them for.

 

In addition to all the tests I will be doing in the next couple weeks I will be enjoying my wash period as much as possible. These periods can be anxiety inducing because you are always worried it is spreading while you wait.  The second I get my taste buds back you can find me belly to the sushi bar!  I haven’t had sushi since started chemo back in December and I miss it more than I ever thought I would.  I will also be eating every tasty thing I can find!  They said I may not be able to have sushi after starting the new treatment so enjoy it now.  Thank you very much, I will.

Scan Day

So I’ve been feeling really good since starting the synthroid and neupogen shots.  I’ve had more energy and my mood has significantly improved.  I’ve been feeling a lot more like myself.  What a relief!  Sometimes you just wonder when the fog will ever lift.

Share your breast cancer story with the NY Times!

So the NY Times was looking for people to share their breast cancer stories. 
Of course, I jumped at this chance.  I only got 500 words though!  I'm hoping they'll contact me for a bigger story.  Hey, why not?
Here's what I submit:

One shot, two shots, three shots, floor!

Ok, so I’m not actually doing alcoholic shots though that would be fun.  I haven’t had a drink since November of 2012, not even on my wedding day.  For the wedding I got no sugar added organic apple cider, it was actually pretty tasty.

Anyway, I had a pretty rough week last week.  It was actually the culmination of a couple rough weeks brought on by low white blood cell counts causing me to have to skip a chemo treatment and have more of those ugly mouth sores as well as low energy levels.

Making Wishes

“30 you’ve only just begun” those few little words on a birthday cake candle were enough.  I couldn’t help but think of my own thirtieth birthday just three years ago and if I’d only known then where I would be now.  Tears started to well up in my eyes and though I willed them not to fall, they fell anyway.  I kept it together until we were in the car on the way home and then I just lost it.

Summer!

Ah summer. We slog through the winter snow and ice and rain just waiting for the days we can toss aside our bulky coats and dip our toes in the ocean. We relish the long daylight hours, drinking outside, getting some fresh air. 

SUBSCRIBE! by email now available

You are now able to subscribe to my blog by email - just scroll to the way bottom and put in your email address, hit submit and you'll get a pop up asking you to type in some letters to verify you are human not robot.  You'll then get an email with a link in it to confirm  your subscription, click the link and you are all good to go!  Thank you for your interest in my brain dumps!

I'm not sure if it will email you when I update the page titled "journal."  You can get to that from the link on the top.  I have been randomly adding my old journal entries to the bottom of the page.  They are kinda raw so if you have an issue with "f-bombs" you may want to stay away.

Don't forget the Making Strides Against Breast Cancer walk is only 88 days away.  Please consider donating.  Even $5 makes a difference. Thank you!!!
http://main.acsevents.org/goto/malaya

...And then she died

I love survivor stories.  They provide hope, perspective, and maybe even some medical information that you can use.  You hear these stories on the news, websites, you tube, friends, family, strangers, and books.  They can inspire you; unless they end with “and then she died.” Seriously.  As in seriously people tell me stories that end with “and then she died” and seriously, don’t tell me a story that ends that way. 

Where’d all the good people go? asks Jack Johnson

So I will admit to being a bit of a cynic when it comes to people.  I’ve been told before I am too young to be as cynical as I am but that I am wise beyond my years.  I’m not sure if this was good or bad.  Either way, it is what it is.  I’ll admit though that the past year has given me a new perspective on people.  Since my diagnosis I’ve experienced kindness from strangers in every possible place and in ways I never would’ve imagined.  I’ve also seen my entire roller derby team rally around me and prove that a derby team really is your second family.  I’ve had friends and family step up to the plate in ways I never imagined.  Just today I was moved again by the kindness of strangers.

Honeymoon: Spa Day

This is a bit overdue but I still thought it was worth posting from the honeymoon.

We went on a wonderful cruise aboard the Allure of the Seas for 7 days on our honeymoon.  It was a much needed break from the day to day issues of life and we had a lot of fun.  The one thing about cancer though is that where you go, it goes.  You can try not to think about it but the treatments leave you with limitations you must always be aware of – stay out of large crowds, no sushi, no buffets, stay away from coughing people, etc.  I actually wore a surgical mask while on the airplane to try to keep the germs away since it is just recycled air.  I got a lot less stares then I thought I would.  Also, many of the restaurants on the ship were buffet so that limited us in our food choices.  I’d like to say I was blissfully happy the entire trip but the medications they give you to help with the chemo side effects can cause your mood to sink when you are withdrawing from them. I wrote this while on the cruise but couldn’t post because the wifi cost $30 per HOUR!

Packing With Cancer

I am currently sitting in the airport waiting for our delayed flight to start our honeymoon! Yay! I am so excited we were allowed to go. 

Let me just say that packing was a royal b*tch though and almost did me in. I am one of those people who naturally tends towards ridiculously organized, over prepared, and prompt. This means a normal trip for me starts with a list of things to do and a packing list divided into categories. I save my lists so I don't reinvent the wheel each time I travel and it seems to work well for me.  

FOOD FOOD FOOD!!!

This post is a two parter because I have two unrelated things to say about food.  Please feel free to read either post or both, it’s up to you.  I won’t know the difference!

Food Glorious Food! – This post is about my mouth sores and how they can affect your mood and eating.

Cancer Nutrition – This is about what I have done in regards to eating healthy and about how others always have suggestions for me.

Oh Hair!

I was not one of those women whose first thought at diagnosis was “I don’t want to lose my hair.” No, not even close.  My first thought was “I don’t want to die.”  My hair was not a real concern, not at all.  I didn't think about my hair at all until the first time I found out I was getting chemo back in December and even then I didn't dwell on it.  Sure, every time I go to the hospital and see a bald woman I get a little freaked out, a pixie cut even induced panic in me once.  All those bald heads were just a reminder of cancer.  It meant they were sick.

Val Skinner Foundation LIFE Event 2013

On Monday, June 10, 2013 I got to share my story at the Val Skinner Foundation LIFE Event.  The room was packed with about 130 professional golfers, donors, healthcare professionals and company heads.  I was so nervous about keeping it together when I got up there to speak.  How do you tell people something so personal, so fresh, so in the moment without bursting into ugly tears and sobs? 

TED talk by another Triple Negative Breast Cancer patient

What is Inspiration?: Julia Selinger at TEDxPSUAD

Patience Patients

As a cancer patient, time is of the essence.  Especially at stage 4.  I feel like I want to savor every moment I get; I don’t want to wait in lines or wait for late people or waste time doing things that can be done more efficiently.  I can see that other cancer patients have the same thoughts through their actions and really, don’t we have a right to be this way?  We've been told (some of us) that our lives will be cut short and to make every day count.  At the age of 33 I shouldn't be thinking about my mortality but just assuming I will outlive social security, see my grandchildren graduate high school, make it to the age where I can take money out of my IRA penalty free, and be a wacky old lady with crazy grey hair and bright red lipstick.

But there is one place where I am extremely patient and this is at the hospital.  I’m not patient with waiting weeks for an appointment, that’s not what I'm talking about.  I am talking about arriving for my appointment, waiting for them to see me, waiting for treatment while the pharmacy reads my blood work and mixes my cocktail.  Patience is a virtue.  Accuracy in my test results and chemo bag is essential and I will wait for that.  I will wait all day.  It is worth it.

Oh the People You'll Meet!

Survivor's Day 2013!

About me:

Well, I am a 33 year old wife, doggie momma, derby girl (aka Slamour Doll), friend, daughter, occasional yogi and full time cancer warrior.  A few months ago I was diagnosed with stage IV triple negative breast cancer.  The "tricky" kind, so I'm told.  I decided to start a blog because I've taken a few weeks off from work for my latest clinical trial (my 2nd in 6 months) and I think that occasionally I have something interesting to say.  Guess we'll see. LOL

I will post some of my journal entries from earlier in this cancer battle as we go along.  For now, enjoy this beautiful day and each day you are given. XOXO