One of Those People

I’ve been having a bit of a rough time lately.  I was on a chemo regiment that made me feel normal.  I was back to my cheery self and had energy and a desire to actually go out and do stuff, but then I noticed that things weren’t feeling right and that most likely this treatment was failing me.  Unfortunately, I was right.  This meant on to treatment plan number 7.  This new chemo has been pretty rough on me.  The first two weeks I was on it, I was in some serious pain.  My entire body hurt and nothing was helping, then my heart started racing and I ended up in the ER.  The second two weeks of this chemo depleted my immune system.  I had a fever and vomiting and felt awful.  I was hospitalized for five days and on day five, my hair started to come out in clumps.  It was not fun.

Number 7

For two weeks now, since I started this new treatment, I've been in pain. It's like menstrual cramps all over my body. It rarely lets up. I'm crabby and sleepless. I'm mourning for my last chemo which I felt great on. I'm not even sure this one is working. 

I'm taking double laxatives everyday (this one causes constipation) plus aleve. I'm crying regularly from pain and frustration. 

I'm sick of this daily battle. I'm sick of being a warrior. I want a cure. I want a future. I want to live. 

I want a damn glass of sangria. 

Stranger in my own body.

I wash myself and get out of the shower and there it is in the mirror, another person. I move to try to see myself around her but she ducks when I do, swerves when I do. Who is this person? This can't be me. I have long blond hair, no freckles, I have cheekbones and muscles and nice nails, no swollen arm. But this person in the mirror doesn't look like that. It is me though. 

The changes started when my treatment started in 2012. That seems like so long ago but it's not really. This changing has been a slow process. It creeps up on you until you suddenly realize you are leaving the medicine cabinet open when you brush your teeth so you don't have to look at yourself. 

I Wanna Run

I wanna run. Not like a marathon or even a 5k. I wanna run through the rain, I wanna run around the backyard with my dog, I wanna run up the steps at my office.

Mission

Sometimes things just hit you.  Right. Smack. In. The. Face.  You just think about life and mortality and all the things that go with it.  I’ve been thinking about it more than usual lately because my birthday is coming up.  I think about how long I’ve been on this journey, how long I’ve had cancer, how long the statistics said I had left to live.  I never wanted to read those statistics but it is hard to read about triple negative breast cancer and never come across one.  They piss me off.  There should be a spoiler alert before they blurt out that shit.  Besides I’ve already broken through their shoddy math.  I plan on continuing to do that.  I plan on living.  I am living.  Every day I get up and I think, “I am going to live.”  I rarely think about dying, that’s for old people and I’m not even 34.  It’s barely a question in my mind anymore – living or dying.  I’ve been feeling really good lately and I’ve learned something about myself – my will to live is strong.  I’ve already defied the odds.  I have great doctors and I just feel like one day they will tell me they’ve got something new for me and it will do the trick.  It will kill this beast inside of me and I will win.

Dear Cancer

I know it’s been a while since I posted.  I haven’t abandoned my blog but I’ve been having some weird moods lately and not all of them have been good. I didn’t really want to post crap or moody rants.

Anyway, today I decided to write a letter to cancer.

A Random Thought Train

My heart is beating out of my chest and I can't calm myself. I've been reading again and I read about a clinical trial for stage four triple negative breast cancer that's recruiting. It's immunotherapy and they inject you with a virus. It sounds hopeful and scary and I'm freaking out. I need to call them, get more information. Do I qualify? Can I get the treatment here or will I have to go to their hospital in Florida? Should I even try this?  These decisions are so incredibly difficult when you are facing life or death.

I read more articles. One describes all these great improvements, finishing with how they've lengthened life expectancy from two to three years. WHAT? WTF. NO! Just no. Three years is unacceptable. How can they say that's great? Do you know how fast three years goes by? I can't help but go there. Think about it. I try not to. Not me. Three years is half gone and it's not enough time and no. Just no. Not me. I have many more years left in me. I've promised myself I won't cry today but the tears find my eyes and I fight them back as best I can. I may be tired of chemo but I'm not giving up. I'm still fighting. I will continue to fight. I'm still contributing to my 401k, I don't plan on going anywhere anytime soon.

Never puke in a paper bag and other cancer words of wisdom

1. Never puke in a paper bag. Unless, of course, it is an emergency.  I will admit I had one such emergency as I was driving home from work one day.  I felt fine one second and the next second, well, not so much.  All I had in the car was a paper bag, thankfully it was padded with some tissues I had thrown in there earlier.  The bag barely made it home to the garbage can.  I now keep a puke (plastic) bag in my car.

Hair Again, Gone Tomorrow

Sunday, January 19, 2014

I’m good. No really, I’m good.

Today someone asked me how I’m doing.  It doesn’t sound that odd.  I’m sure someone asked you the same thing today and it wasn’t a big deal.  But, when someone asks me how I’m doing it could get a little awkward.  If I answer “good” I will get one of three responses.

Chemo Christmas 2014

Seems like this year's chemo Christmas theme is gifts! So, if I have your address and you get a mystery package at your house - Merry Chemo Christmas! 

Chemo Christmas

I've been home from chemo just three hours and already I'm trolling Groupon and Living Social for things we and my family and my friends "need." You see I'm usually pretty frugal but I have this little shopping habit post chemo. Fill me with chemo and Benadryl and steroids and the former shopaholic comes back with a vengeance. Last winter there was a clear theme. I must have been cold because the theme was blankets. I bought one throw blanket. It was soft and warm and I loved it but wasn't thrilled about the color. So I bought another one, in a different color. Next I bought sheets, maybe a few sets, I'm not sure really. The Spring/Summer I bought things for the wedding.  Most of the items purchased for our wedding had beginnings on Groupon or Living Social. I end up in a shopping haze.

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.