Monday, May 19, 2014

Lessons Learned

One year ago today I learned a lesson I never thought I would.

On may 19th, 2013 I was scheduled to see my Oncologist and get the pre-chemo blood draw necessary for  my fourth round of the Gem/Carbo chemo regimen.  I had already endured six treatments (three rounds) since mid March.  I had  done well with the first two treatments, even taking an overseas vacation during the in-between week and managing very well. That is until the day we returned.

The day we came back from vacation, it was at the end of a seven day whirl-wind trip and very long flight..  As I began to wind down, I thought I had maybe overdone it and was looking forward to some rest. I wasn’t very concerned about how I felt, thinking it was only the trip.

It didn’t even occur to me to calculate the nadir for the regimen. During the chemo regimen I had only just completed less than a year earlier, those low days hadn’t seemed much lower than any others and so I never focused on the nadir. I went to work the day after we returned from the trip and lasted about half the morning. At about 11a.m. I packed my laptop, went by my boss and said, “I’m leaving.” I went straight home and crawled into bed. The next day was my regularly scheduled  visit with the Onc and blood draw. 

That day the NP came into the exam room. I had laid down on the table to rest because I didn't have the energy to sit up. She bent over and looked at me with concern, “You want to go to the hospital now? Or wait until tomorrow?” I just nodded but I said, “I can wait.”

You see, other than the mastectomy, I had never been hospitalized. I wished almost immediately that I had just agreed to go to the hospital that day. My white blood cell counts were low, and required me to get IV antibiotics but it was the red blood cell counts that had knocked me out.I needed a blood transfusion to return to acceptable health.

After that day, I didn’t go back to work. I felt pretty low for the rest of regimen. I had  to push back the second treatment for the antibiotics and the third for low counts as well. When I pushed back the third treatment I was so upset at the thought of waiting another week to be done that I called the next day, as soon as I felt better, and begged them to get me in earlier.

Imagine that, I was begging to get chemo…. But that wasn’t when I learned the lesson. 

I learned the lesson after the third round. During those two weeks following the sixth dose, I slowly slid into the abyss. Sure, the fatigue increased ten-fold but that wasn’t it… my skin became sallow and I actually looked gray, but that wasn’t it…. bruises appeared on my back and legs and I had two black eyes...  but that wasn’t it either.

What was it? It was the depression, plain and simple.  I never knew I could feel so low. I could be so despondent. I could be incapable of mustering the strength to go on.  I learned I could be low enough not to care anymore. Despite the idea that I was ‘waging a war on cancer... a battle for my life,’ I no longer cared. It didn't matter if I was risking my life or if I needed the treatments. I didn’t know if I had received enough of the regimen and I didn’t care if it wasn’t enough. I couldn’t ‘live’ like that .

One year ago today I went to my oncologists office and begged NOT to have any more chemo. No, that’s not quite it. I outwardly refused to do any more chemo. I told the doctor, it didn’t matter the outcome, I wasn’t able to do any more. I was done.

And so one year ago today I learned it was possible for me to ‘give up’ to no longer care. From the day I was first told I had cancer until one year ago today, cancer took so much from me. I just never thought it could take my will to live. AND, that is a lesson I never thought I’d learn.

Sunday, May 4, 2014

Too lazy to write... but not to lazy to work

Ok, I know, how lazy can I be? I can't spend ten minutes putting pen to paper (or fingers to keyboard) to update everyone on my progress? Apparently so.

The good news is that despite how lazy I am with this blog, I have a few other skills and I am very busy with my advocacy work for metaplastic breast cancer. So, I thought, for awhile, I'd switch things up and make this a video blog. I have a lot of things going on and I want everyone to know what I am up to. Opinions, advice and encouragement are all welcome.

Thanks to all of you for the support.

Saturday, January 18, 2014

You're going to hear me roar

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely

I'm a fairly easy-going person.  I'm a Libra. I consider myself generally balanced. I don't go off the deep end too often. I don't feel entitled to force my opinions on others through bullying tactics or by shear force of will.

So after I first joined an online support group, I tip-toed lightly around others unsure of how it should work. As time went by I found a voice that was a balance of my own opinions, politely getting along and saying anything I thought would make someone feel better. It just broke my heart to hear another woman in distress, gripped with fear and worry so I tried to be a cheerleader. I tried to help boost the morale of others, even when in my heart I feared for them.

I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything

Of course that all changed when I was kicked out of that group by a mean-spirited admin whose true goal is to earn a living off of the backs and hearts of women diagnosed with this disease. (If you'd like to read about that you'll have to read this post) I had become interested in finding real ways to improve our prognosis and I was being ostracized from the very women I felt most connected to.  Women I needed at that very moment. (I was five days post MX after my second DX)

You held me down, but I got up (HEY!)
Already brushing off the dust

Fortunately I understood that the women in the group were not being represented by the admin. And, I was not alone as others had been kicked to the curb alongside me. So, we dusted ourselves off and began a new project aimed at getting metaplastic breast cancer the notice it deserves. We built a website, started a facebook group, a facebook page, a google + page,  a youtube channel, hit twitter and created a ScoopIt page as well. We began to reach out into the medical community to improve communication and understanding between our group and doctors and researchers. I felt like I was inching along, making some headway in my personal goals.

You hear my voice, you hear that sound
Like thunder gonna shake the ground

A few weeks ago in a BCSM chat the topic was what  "three words" would you use for your 2014 mantra? I've been thinking about it a lot. This is the year to really press forward. Last year was baby steps. I didn't even know if I wanted to be an activist but after all that we have accomplished, I'm ready. My words are:

Action: I'm going to be actively working on the site (as always) but more than that I am going to actively work on getting metaplastic breast cancer noticed in the medical and breast cancer communities. I'm going to be reaching out to doctors and researchers and asking for help. I'm going to be offering support to both patients and caregivers. I am going to continue to build that community so that I can bring a larger group of patients to the doorsteps of researchers and in turn bring the expertise of the research community to the women affected by MpBC.

Commitment: This isn't my day job but it's certainly my night job. I won't be discouraged when doctors don't respond. I won't be discouraged when I can't reach every patient. I'll be sad at every lost life and swear each time that I'll keep writing those letters, reading those studies and supporting the women who need it whenever I find them. One day, I may join a bowling team, but that day is not today. Today, I'm working for the women like me who have fought metaplastic breast cancer.

Determination: I am determined to make a difference. I expect challenges. I expect set backs. I expect to persevere. I expect to ROAR!

I got the eye of the tiger, a fighter, dancing through the fire
'Cause I am a champion and you’re gonna hear me roar

Roar- Katy Perry

I went from zero, to my own hero

P.S. Thanks to that Admin who helped me find my voice.... it's a loud one!