Tag Archives: support

Humans of New York

 

 

I found this really awesome Facebook account called Humans of New York. I didn’t read all about it, but I’m pretty sure it’s just a photographer who finds random people in NYC, interviews them, and photographs them. It’s such a simple yet awesome idea… of course my first thought was “Why didn’t I think of that?!?” Sigh. Hashtag feelings of inadequacy. 

Anyway… while scrolling through the page, I came across this one post and it instantly made me misty-eyed because it perfectly and eloquently sums up my relationship with my boyfriend. It also, indirectly, sums up what happened during my cancer experience. He didn’t really want to be involved in every aspect, nor did I want that, but the second I needed him, he was there. I think this is a good balance for people to strike during cancer treatment – you don’t always need someone, but when you do, it’s important that they be there for you. Thanks, Will! 

Image

First Descents Trip

There’s so much I can say about my trip – I don’t even know where to start. It was amazing, inspiring, invigorating, life-affirming, and a ton of other really overused adjectives that don’t mean much if you weren’t there. Sorry for this terrible start to my post, but I honestly just can’t write anything to adequately describe my week in Colorado.

I’ll begin by introducing First Descents. It’s a nonprofit that takes young adult cancer patients and survivors on outdoor adventure trips all over the US. I heard about them when a support group I am part of posted a link to Facebook. At the time, I was just beginning my “there’s got to be more to life after cancer” existential crisis (it’s full-blown now, by the way, but that’s a later post), and I thought this was a great way to do something outside my comfort zone. So I signed up for rock climbing – it seemed the biggest stretch (read: most dangerous) out of the activities they offered, which include kayaking and surfing. I chose to go to Estes Park, Colorado, because I had never been to that region of the country before.

Image

Me, Roadrash, and Brad Ludden, founder of FD.

Before I knew it, September rolled around and I was getting on a plane to Denver armed with a ton of synthetic clothing, excitement, and nerves.

When I got to the house, just past the foothills of the majestic Rockies, I felt like I had stepped into MTV’s Real World. All twelve of us chose bedrooms to sleep in, introduced ourselves, discovered a sweet hot tub on the porch, and commented how amazing our accommodations were. Then we delved into a healthy, delicious meal of burritos cooked by our very own house chefs, Chamomile and Antelope Jamboree.

Okay, at this point I should probably mention that we all went by nicknames for the week. I became “Beaner” (because my name is Cara, and a carabiner is a tool used in climbing… get it?). Apparently it’s also a racist slur for Latinos.

The next day we got up bright and early to go climbing. Everyone really just jumped in. We had guides from the Colorado Mountain School helping us out – they showed us what to do, set up ropes, and for several hours we just climbed. Some of us belayed (acted as the on-the-ground anchor for the climbers) while others climbed, and vice versa. They also taught us to rappel.

Image

Here I am, on belay.

This was the bulk of the trip – climbing with each other. We had one day “off” to explore the Rockies, but the highlight of the trip, at least for me, was really the climbing. I just can’t describe how exhilarating it is to make it to the top of a route, knowing that you used your body to conquer a rock that wasn’t designed for you to climb it, and looking out over the gorgeous scenery in the fresh mountain air, marveling at what you just accomplished. It was really magnificent.

I’ll admit for a while on the trip I was a negative Nancy, and the fact that I was PMSing may have contributed. For a day or so I felt a bit isolated. I was only one of two people who had had breast cancer, and other people’s treatments didn’t compare. Plus, we were all at different points in our experience so I felt a little beyond or behind some of the people there.

But in the end I realized we are all doing the same thing: navigating our lives through young adult cancer. And the shared climbing experience helped because it served as a metaphor for the cancer experience. Cancer is something you are forced to conquer, and you lament every step of the way your loss of control and dignity. These rocks were a challenge I chose on my own, and every step of the way, no matter how terrified or ready to give up I was, I had a blast and felt mired in positivity – both from my inner being and from the amazing people on the trip with me who radiated understanding and encouragement.

Coming back to real life and work has been extremely hard. I wish I could still wake up each day and hit the rock with my friends, but life goes on. I definitely feel more motivated, however, to take the reigns of my own life experience. I’ve been in a very strange place, recently, questioning why I’m here on this Earth and wanting to find what truly makes me happy so I don’t waste any more time on things that make me unhappy. This trip definitely jump-started my desire to seek adventure and do things that are outside-the-box and not waste life at a desk, if that’s not what I really want to be doing. There will always be rocks to conquer, after all.

Image

One rock down, infinitely more to conquer!

Today I am feeling…

When I was a teen, there were teen “diary” sites like Xanga where you could have a little emoticon that showed your feeling each time you wrote. Well, if I had that ability on WordPress, today I’d have :\ that and it would say “overwhelmed”.

Yesterday, I had what they call a port placed in my chest to make it easier and safer for me to receive my chemo infusions. Basically a small pad goes under my skin and it hooks into one of my major veins, meaning the nurses can easily just stick a needle in this pad and administer the drugs straight to this vein, rather than having to prick my hand or arm every time and risking damage to the small veins there from the toxic chemo drugs.

The placement procedure was fine – I was prepped like I was for all other surgeries (get nekkid, take off all jewelry, get an IV placed, wait around for a while in the pre-surgery room, etc.) but for this one I was fully cognizant as they took me back to the room, and prepped me. They need to use an ultrasound to place the port, so I was lying on my back and they draped my body so that just a square of my chest was exposed, and there was a big X-ray machine hanging above me and a lot of techs scrambling around. I knew I wasn’t getting general anesthesia, but I was getting happy meds so I kept waiting for them to start pumping that wonderful stuff into me. Finally, before the surgeon came into the room, they did, and I felt the normal lightheaded, heart-slowing-down feeling that I enjoyed for all my other surgeries. I honestly don’t remember much after that – I think I napped. I felt nothing, and then there was a nurse peeking into my sterile “tent” telling me I was done. An hour later I got to go home, and the rest of the day I slept.

That night, the port hurt a bit – nothing unbearable but a sore in my lower neck like I had whiplash and a slight searing pain where I imagine they cut me open to put the port in (I can’t see because it’s all covered in gauze).

My skin was also a bit red, and I started freaking out that I had an infection. That’s what started today’s overwhelmed feeling. The next thing that exacerbated it was that I spoke on the phone to a young woman who had her chemo at GWU. I got her name from the local YSC affiliate, while I was doing research, because I wanted to just see what other people’s experiences were like. Well it was all going fine and good and we were talking about wigs, what to do during infusions, etc., but I started asking her more about her experience and found out that she had been diagnosed at 28 and they originally told her she was Stage 2 – larger tumor but no positive nodes. Great! Not so great. After her surgery she got a PET scan and it revealed she was really stage 4, with mets to her lungs.

Womp, womp, indeed. Just when you think you are out of the woods with a great prognosis, you hear a story like this and all the fears of terrible metastatic disease and dying come flooding back. I know it is rare for this situation to occur, and it’s possible there were more differences in our experiences than I talked to her about, but still. No positive nodes and Stage 4. That’s truly being dealt the short straw.

Then today I went to a clinic at the hospital at the urging of my surgeon. It consisted of short visits with a physical therapist, massage therapist, Reiki specialist, and a naturopathic physician. While these women were very kind and I appreciated their input (I especially liked the Reiki, though I went in thinking it wouldn’t do much), it also put so many things in my head that I have to remember before starting chemo… which is… oh, right, tomorrow.

Prevent lymphedema. Massage scar tissue daily. Use Vitamin E. Remember to breathe. Rub your arm this way to encourage fluid to flow through lymph nodes. Eat this vitamin. Don’t take that vitamin. Eat lots of green vegetables. Eat protein. Limit carbs. Make this smoothie if you don’t feel like eating. Freeze meals at the beginning of the week.

And of course on top of all that I get home and had my own laundry list from the oncologist of drugs I have to take and when and items I should buy to be prepared for side effects (Colace, soft toothbrush, biotene, etc.).

MY WORD. So you can see how I’d be overwhelmed. I’m a little scared that I can’t do this all. Sure, my parents will be here for most infusions, but they can’t live here for the next 3 months and there will be times when I’m on my own and the boyfriend is at work. How the heck do I remember all of this and not make some fatal mistake?

Crazy Expensive Drugs, and Thoughts for a fellow BRCA-er

Several news sites were abuzz yesterday with the prospect of the FDA revoking its approval of Avastin, a drug used to prevent tumors from growing in people with very late-stage breast cancer.

Here’s an article from the Washington Post: FDA considers revoking approval of Avastin for advanced breat cancer

While it’s not immediately relevant to my situation or that of many previvors, it was shocking for me to see how expensive these cancer-treatment drugs are. The article says that the producing drug company has a program that caps yearly payments at $57,000 for women with income less than $100,000 – that’s more than HALF the woman’s income spent on one drug! Crazy.

I also want to send thoughts toward another woman who blogs about BRCA and is a great supporter of our mutated little community. Teri Smieja, whose blog is here, has been struggling with some post-surgery complications. You can read about them in her August 14th post.

While I have not yet decided to have surgery and I don’t see myself having surgery for a while, reading about this does make me scared for the day it eventually happens. Please support Teri in her journey and let her story be a warning and a learning experience in your own BRCA journey.