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: