Thursday, July 24, 2014

Putting on my oxygen mask first...

Any time I travel on a plane, I always pay close attention to the safety information given just before take off. While everyone else is checking their emails or chatting, I actually listen with the cardboard instruction sheet in my hand. You may assume that I am an anxious traveler. Actually, I'm not. I just believe that knowledge is power. I also do not swim very well, which makes me feel like I need all of the information I can get about how to unhook that life vest from the seat - just in case. That said, I've always been tripped up by the instructions about how adults need to put on oxygen first before assisting children. It seems so counterintuitive to me - help myself before my kids. Yet, intellectually it makes sense to keep myself safe so that I will be able to help my kids.

Now that I'm dealing with breast cancer, I've been forced to realize the importance of "putting my mask on first". There are mostly good days, but sometimes I'm tired, cranky, or have tummy troubles and I've needed to put myself first. It's not easy for me to do, however, I'm doing it.  I want to be around for a very long time and that means taking time to care for and heal myself.

Don't get me wrong, I've got great kids. But, let's face it, they're kids. I don't want them tippy-toeing around me,  anticipating my every need and constantly asking me if they can help out. While compassion and empathy are important for them to learn, I don't want them to feel like I need to be coddled like a new born chick. So, for the most part, I like that it's business as usual around our house.

I will admit that the other evening I lost my sh&t. In a moment of exasperation, I shouted out to my family: "I've got cancer you know!" when no one seemed to be treating me with the respect I thought I deserved. I immediately felt foolish, but in that moment it felt good to put it out there for everyone to consider.

I've learned that "putting on my mask first" isn't selfish after all. Now if I could just get my kids to empty the dishwasher without being asked...

Monday, July 21, 2014

Birthdays in Cancerland

Tomorrow is my 48th birthday. Hard to believe, really, as I feel much younger. I was 14 when my mom was this age and I thought she was ancient and out of touch (shhh... don't tell her I said that!) Now I know that I was the one who was out of touch as a surly teen. Times sure change.

I realized this morning that it's not going to be my 48th birthday, though technically it is. It's actually my Zero birthday, as in being reborn again. From now on, my birthday will be an invisible  mark on a timeline for each year that I live without cancer. So, next year, I'll be one. I like that way better than 49!

The time after treatment can be a real roller coaster for many survivors. I'm "lucky" to still be in the middle of it all - head down doing what's expected. Since I'll be receiving the targeted HER-2 miracle drug Herceptin well into the second half of next year, it's very likely that I will turn "1" while still in treatment. There's something settling about that, at least I think so.

It's amazing how perspective shifts. When I was first diagnosed in May, I woke up every day (after I finally was able to sleep again) and for a split second I had a normal experience. You know, stretching and yawning and enjoying the birds and sunshine outside the window. Then, BAM "I've got cancer. I've got cancer. I've got cancer." It was like a curtain closing in around me, suffocating me. I'd go through the rest of my day pretending to be upbeat, hopeful, and ready to fight. That's what people wanted to hear. That's what my kids needed to hear. At night, I would lie in the dark asking for someone, somewhere to please not let me die. To please throw me some sort of bone. I was bargaining with the cancer gods and hoping they were merciful.

Once I was set up with a treatment plan, the curtain lifted a bit. I found out I wasn't going to die (well, at least not for now) and that there were powerful drugs, surgery, and radiation that could hopefully put this in my rearview mirror. The catch of course was that I was going to feel worse than I had ever felt. So, I started waking up thinking "I'm so scared. I'm so scared. I'm so scared." Turns out, so far anyway, it isn't too difficult.

Now, just a mere 8 weeks later,  I wake up, and think, "I've got cancer and I've got a plan. It's time to get up, and move on, and live". And so, I do.

Monday, July 7, 2014

An open letter to my body

Hello Body,

So, here we are dealing with breast cancer. We'd never have predicted that would we? Well, we made it almost 48 years with nothing major going on, so we were overdue I guess. And, to be fair, I haven't always taken the absolute best of care of us. Sure, I recently started exercising and I've always fed us fairly healthy food. That said, I've sort of lived in a "not me" bubble bragging about how healthy we were and never quite got around to putting us first. Yes, I did mammograms and such, but beyond that I marched along thinking we were okay and just fine the way we were.

Here's the thing, contrary to popular belief, I'm not mad at you/me/us. You see, I've decided unilaterally that we are not "battling" cancer or "kicking" its ass because it's a part of us just like that lingering cellulite on our thighs and those moles on our arms (yes, I've got an appointment to get those checked - no worries!). We simply made a mistake and started growing something in our "garden" that doesn't belong - the tumor affectionately known as "IT".  No harm, no foul (well at least the power of positive thinking tells us that's how we should think about IT). We can beat ourselves up questioning the food we ate and so on, but the reality is that 1 in 8 women will get breast cancer in their lifetimes. We took one for our "team of 8" plain and simple.

Lucky for us, I found IT. That's not to say finding IT early really makes a big difference in the long term outcome, but it does make people feel better when we talk about my prognosis, so I'll give them that because people don't like talking about cancer to begin with. And, like most things we do, IT's aggressive Her-2 positive. We wouldn't want it any other way, would we? That's how we roll...

We'll forever be different now, you and I. There's the normal before IT, and the new normal after IT. We're still figuring out how to navigate the new normal, and that is okay. We've had a lot to deal with in a short amount of time- port placement, CT scans, bone scans, chemotherapy, fatigue, hair loss, and those dreadful tummy troubles. We should be proud though, we're doing a great job and being brave (as if we have a choice - haha!).

We're also very lucky to have amazing care at Dana Farber. Seriously, people travel the world to get access to the care that we drive 1/2 hour to each week. We're also very lucky to have amazing family, friends, co-workers and neighbors. The world is a kind place. We sometimes forgot that when we had our heads down living life in the old normal.

We've got a long road ahead but the good news is that IT is gone - thank goodness for medicines that sent IT packing.

So, it's all good between you and I. We're going to come out on the other side and continue to take good care of "us". We'll celebrate and always remember all that is good in the world.



Thursday, July 3, 2014

Bard Power Port placement

The days leading up to placement of my port were stressful. Keep in mind that I'd never had a *real* surgical procedure, let alone one that was intended to insert a plastic device that would connect to my jugular!

I've learned a lot through this process, namely that you need to go to a hospital or facility that places lots of ports, that way yours will be the gold standard. In my case, that turned out to be Brigham and Women's Hospital in Boston. The unit I was in places 10 or more PER DAY! Anytime you get a chance to practice something 50 or more times per week, you are going to get good at it.

For those who are curious about the process and the port, here's the run down:

I had to fast the night before. When I arrived at the hospital, I waited in a pleasant room at the Shapiro center until I was called down to surgical prep. I had my IV (last one for a long time!!) inserted. The resident came in and explained the procedure, and showed me what the port looked like. Here's a pic for the curious (mine is the one on the left):

Next, I was wheeled into a small operating room, given the happy drugs and gently slid to the table. If you've ever had a colonoscopy or similar procedure, your sedation will be "twilight" - that is you really don't know what's going on, but you can respond (albeit slowly) if asked to.

Before I knew it, I was being wheeled back to the recovery bay and ravenously downed graham crackers and ginger ale. I was on my way in 20 minutes and felt marvelous (all things considered). No pain meds were given, which made me hopeful! I was told to rest for the remainder of the day, take it easy for a couple days, and then light activity for a week. 

When I woke the next morning I expected to be really uncomfortable. Honestly, it was just a dull ache as if my trainer had worked me too hard at the gym (actually she works me worse - LOL). I was shocked!

I was due for my first chemotherapy later that morning, and scared to have anyone pull back the bandage to access the area. Again, NO SWEAT! The phlebotomist numbed me with spray, and marveled at how amazing my newly inserted port looked. I didn't even have swelling or a bruise!
The access went quickly and painlessly as did my first chemo (I'll do a separate post about that later).

I've now had the port for over three weeks and I can't really tell it is there for most of the day. Since mine is on the left, my seatbelt really aggravated me for a week or so, now I don't notice. I'm able to sleep on that side again and find that it has become a part of me.

I tried port access without the spray yesterday, just to see if it hurt (yeah, I'm like that) and while it didn't hurt, I did find that it was just slightly more tingly and I was able to feel the first couple drugs going in. I'm going to go back to the spray just because it made it literally pain free and numb. I've got enough to deal with, may as well take the easy way out when I can.

Bottom line: If you are due for a port, find a surgeon who does this in his or her sleep :) Don't be afraid, it's not bad. I breeze through chemo while I'm hearing other infusion machines beeping like crazy due to blocked lines after patients have had to be extremely patient while IV's are placed. It's your choice, but don't let fear of insertion make the decision for you!

Wednesday, July 2, 2014

Catching up...

At the end of April 2014, I found a suspicious lump while on vacation in Washington DC with my family. I immediately knew that it was "different" than lumps/bumps I had felt in the past, but still wasn't convinced it was going to be a problem.

I went for a mammogram, ultrasound, and eventual biopsy. On May 15th, I received confirmation that I have ER-/PR- Her2+ breast cancer that had most likely metastasized to my axillary lymph nodes on my right side. I consulted with a team of oncologists and a surgeon at Dana Farber and they set up a treatment plan for me. On May 30th, I had a CT scan, bone scan, echo-cardiogram, and another mammography. During the first week in June, I had a lymph node biopsy that confirmed lymph node involvement. On June 10th, I had a Bard Power Port placed on the left side of my chest in preparation for my first chemotherapy treatments, and then spent a 7-8 hour day at Dana Farber on June 11th for my first treatment.

I plan to use this blog as a way of recording my cancer journey, and as a way to hopefully inform others who are going through the same experience. It starts off really scary and unknown, and then things seem to fall into place. Right now, I'm in a routine and have come to accept that which I cannot control. I hope that I continue to be able to keep it all in perspective.

The title for the blog is a play on words given my Her2-neu+ status. Before my diagnosis, I was so ill informed about breast cancer types and their treatment and prognoses. I'll share more about this in future posts. Those who know me understand that I'm a researcher by nature - knowledge truly is power. As such, I have lots of information to share, and I will.

Thanks for reading, and I hope that you will follow me on my journey through Her2-neu+