Estoy Aquí

Contemplating Cuenca

I am home from Ecuador a bit early. I had planned to be traveling for seven weeks, but alas I only traveled for four. It was a great run – so many empowering moments for me and a lot of self-reflection, which was the whole point. But I got tired of the backpacking style – living out of one bag that I had to pack and repack each time I was leaving a place, hauling my pack on long and dreary bus rides, staying in some dimly lit lodgings, etc. Mostly, though, I was lonely. I met some great people, of course, but the nature of my trip was such that I was in each place for a couple days and then I moved on, and people were rarely moving on in the same direction I was, so each couple of days I had to say goodbye and head off to meet new people who I would say goodbye to in a couple of days.

Late one night, as I was stewing in my own anxiety about an upcoming 8-hour bus ride across the border from Ecuador into Peru, I realized I just wanted to go home. What fun is traveling if you have no one to share it with, or if you’re going to work yourself up into a debilitating anxiety each time you have to do something difficult? It really didn’t seem worth it anymore.

I was surprised at how at-peace I was with my decision, though. Much of my self-realization on the trip was focused on how much I beat myself up over things that I don’t do or don’t do “right”. I expected to feel really disappointed in myself for what others might view as “giving up”. I met so many others who were backpacking alone for months at a time. What was wrong with me that I couldn’t do the same? Was I not flexible enough, or adventurous enough, or outgoing enough? Why didn’t I eat guinea pig or jump off a bridge or completely change up my plans or all manner of other things that backpackers did?

My “aha” moment was this: who cares that I didn’t do those things? I am myself, not other person, and I need to be okay with that. It’s so much easier to beat ourselves down about the things we aren’t doing than it is to build ourselves up about what we are doing, especially when we constantly see things on Facebook or Pinterest or YouTube that would suggest that other people are living lives much more epic than our own.

But for most people, life is about 5% epic and 95% normal (at least by other people’s standards) and so making sure that you’re happy with your non-epic moments seems a lot more important than striving to make everything epic, right?

This is not to say that I don’t want to have dreams. I still want to travel to India and sing on a Broadway stage, and I think having cancer made me feel like there was no time to accomplish my dreams so I had to do everything RIGHT NOW, and that caused me a lot of anxiety because, realistically, you can’t accomplish all of your dreams at once and sometimes you can’t even accomplish them at all. So I would like, instead, to focus on being satisfied with what each day brings because life’s too short to be anxious and disappointed.

And this is why I’m starting a new project on my blog, which is to check in each week with something that I did that made me happy. I’ll call it my “weekly happy”, and along with my own posts I’d love to hear from my dear readers with their weekly happy, too.

YSC Holiday Party

Last night I went to Teaism for Young Survival Coalition DC’s holiday party. There was a large group of women there, which was wonderful and sad at the same time. I sat across from a young woman who was diagnosed just 2 months ago and is now in the midst of chemo. She did not seem to be doing well emotionally – she was often unable to put her feelings into words and kept asking if she’d ever be back to her normal self.

I’m in such a different place right now than she is, but I definitely understood where she was coming from. That feeling of being thrown, violently and against your will, into a vortex of doctors, decisions, information, emotions, fears, anxieties, baldness, etc. – it can all feel unbearable and insurmountable at times.

I was at a loss for what to say with her to make her feel better, but another woman at the table said something I thought was really profound: “You will get through this. And, after you do, you’ll be sitting at this table comforting someone else.”

For me, I’m at the “sitting at the table comforting someone else” stage of my experience. But it’s humbling (and infuriating and sad) to know that at any moment, I could be thrown back into that vortex. And I think that’s why I enjoy staying in touch with groups like YSC, because I still need their support.

February Drama

We’re coming up on the one-year anniversary of my breast cancer diagnosis. I’m not exactly celebrating for a couple of reasons… the biggest being the nerve-wracking week that I’ve had.

Last Wednesday, I came home from work early because I was too dizzy to function. Best way I can explain it is vertigo – and it all started when I woke up. It was extremely troubling and my oncologist set me up with a general practitioner to see the next week, but by dinnertime I felt much better so I didn’t make the appointment.

The next day I felt fine and the next. But over the weekend I discovered a hard ridge-like area on my right breast and started freaking out all over again that the cancer had returned.

On Monday I was able to see my oncologist and she was not at all concerned, but she let me get an ultrasound for peace of mind. It all looked normal. Phew – one disaster averted.

Then Wednesday night again I had dizzy feelings – not as much vertigo as slight nausea, lightheadedness, coldness, and not feeling “normal”. This morning I woke up still feeling nauseous, which went away quickly, but I felt a lot of pressure in and around my head – migrating from behind my eyes to the back of my neck and, currently above my right ear.

I am totally confused about what is going on in my body, but I know I don’t feel right and I am worried and scared. My immediate thought, thank you breast cancer, is that I have a brain tumor. Such a drastic conclusion for what are probably benign and uncomplicated symptoms, but that’s what having cancer will do to you.

To relieve my fears (best case scenario), I am having an MRI tomorrow.

I should be happy – I’m going to get this checked out, find out it’s nothing to be worried about, and move on with my life. But I’m scared %&*@less and it’s making me feel like a crazy person. I had surgery to remove the cancer, which was stage 1. No lymph node involvement, no signs of spread anywhere. I had aggressive chemo. There is really no reason to believe that I have a tumor in my brain, other than these weird dizzy spells, which could be caused by a myriad of other minor disorders.

My doctor again says she isn’t terribly concerned – my symptoms aren’t consistent with what she’s seen in brain cancer patients. More like a low-grade viral infection. My dad agrees.

But I’m having the MRI anyway, despite the professional advice and my own fears. I keep having these visions (not literally, or I’d be even more concerned about a brain tumor) of sitting at my parent’s house tomorrow as I receive the news that I my MRI showed a brain tumor. It feels like last March all over again, just thinking about how drastically my life is going to change (AGAIN) if that happens. The weather woman on my TV drones on and on about cold fronts and all I can think is, “The whole world will melt away tomorrow if I find out that I have metastatic cancer.”

What is one supposed to do with that news? And how is one supposed to live a life where every “off” feeling leads to the unshakeable dread that cancer has returned or spread?

I guess we take it one day… one test… at a time. My ultrasound was fine. My MRI will most likely be fine. And once those are out of the way, maybe I can stop worrying, at least for the next three months.

A nightmare

The other night I had a terrible dream. I haven’t remembered a lot of my dreams for the past couple of months, which is strange because there’s so much craziness in my life, I’d expect my subconscious to be working overtime. But this one was vivid and made me wake up in a cold sweat:

Photo credit: me and the Pixlromatic app

I was living in a run-down apartment, old-fashioned apartment, reminiscent of

those in Northeast Philadelphia. Our electricity was flickering and it was getting late, so I went down a set of stairs to lock up. The entrance I was locking up was guarded by several layers of doors – a screen, metal bars, a glass sliding door, and maybe more that I can’t remember. Before I could lock everything a man showed up at the door. He was dressed in a police uniform but I felt an inherent sense of danger – he was coming to kill me. I worked on the doors as fast as I could to fortify the entrance to my apartment but I couldn’t get any locks to fasten fully. I was panicking but kept shutting the doors and turning the locks as far as they would go, to buy time. At one point he even reached his hand through the bars on one door, seeming to help me shut and lock another door. Strange, but I continued figuring he was teasing me. When all of the doors were shut I scurried up the stairs, but I had such trouble with the last few steps – it felt like I was on a fast-moving escalator that kept going descending before I could get off. Finally I made it to the top step and could see into my darkened apartment, but I knew the man was getting through the doors below and coming after me.

That’s when I woke up and of course my head immediately thought about what the dream means in the context of my life. My big battle right now is against cancer. I’m doing all I can to lock it out of my body, but my biggest fear is that it’s still there and that I’m going to find out in the future that it’s invaded me, metastasized to a point that I can’t control. The never-ending steps remind me of how I feel right now – my last infusion is so close and I can see the end of treatment but I know things will never quite end. I might never reach that top platform of being completely cancer-free in my life.

Marriage and The Last AC

I am happy to report that I had a wonderful time at my brother’s wedding. Though I had a ton of anxiety leading up to the event, after stepping off the plane in San Diego all I felt was pure excitement at the thought of sharing the event with my family and especially my brother and his wonderful fiance.

The rabbi officiating the wedding was a great speaker. She kept giving people time to be “present” – to really experience each second that passed and be in the moment, not thinking about the past or future, but about what was happening right then and there. It felt very poignant for my situation. One of the things I was so anxious about was that I wouldn’t be able to be present in the moment of my brother’s wedding – that I’d feel sick or be harping on my past or future treatments. But I truly was able to be there and feel the moment and dance at the reception and enjoy my family’s company, and it was a great weekend! I invite

My parents and I at my brother's wedding reception. I was rockin' my real hair wig!

everyone reading my blog to take a second and really feel present in the moment that is taking place. The past is over; the future can wait; now is the most important thing and you don’t want it to flutter by without taking notice.

Of course, now I’m sitting at home the night before my last AC infusion and I’m feeling anxious all over again. The thought of the syringe filled with bright red Adriamycin being pushed into my veins just makes me want to vomit. How can it be that I’m hardly halfway through my treatment and I’m already sick of it? Tomorrow, as the drugs course through my body, I promise to try very hard to visualize them as good, cancer-killing forces rather than toxic, disgusting, side-effect causing forces.

26 years on Earth

I’ve prided myself for being pretty strong throughout this whole experience. I only cried a couple of times, mostly back when I got my diagnosis. But these past two days have been extremely hard and I can’t say that I feel very strong at this moment.

I didn’t think losing my hair would be this difficult. But as I sat in the bathtub this afternoon and watched what little was left of my once long, brown, curly locks swirl toward the drain I just broke down. Getting out of the bathtub, I reached for a hair tie to put around my wrist and then put it back, feeling stupid. I have no hair to tie. I just have a patchy head with tufts of hair that are refusing to quit until the very last second. I wish they would go away so I could just be completely bald and not look like what I imagined the velveteen rabbit looked like sitting in a trash heap waiting to be burned.

I’ve been out in public but I don’t know how to act. All day yesterday and today I had a lump in my throat that literally made it hard to breathe. I thought my throat was swelling – allergies, maybe – but I think instead it’s anxiety. I don’t know how to be bald in public. What if someone pulls off my scarf? What if little kids laugh at me and ask their mommies why that woman is bald? What if people pity me? Make fun of me? Laugh at me? Look away from me, embarrassed to stare?

Today is my actual birthday and I want to celebrate and feel good about another year under my belt, but I’m terrified to leave my apartment. I know I should walk with my head up and not care what people think. It’s all about confidence and inner strength. But it’s easier said than done and I can only hope that, in the days to come, I find the strength I need to get through the summer like this.

 

Double fisting

Want to see my port? Well you have no choice. There it is. And here’s proof that I’m staying hydrated.

No chemo drugs yet but I’m being pumped preliminarily with saline and antinausea stuff. And my doc treated me to some Ativan too, so you know I’m feeling good.

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?

The Chemo Chronicles, part 1

Well, folks, I never thought this moment would come but the ball is rolling on my chemo treatment and it’s scheduled to start next week. Today was the first step in the process: an echocardiogram to get a baseline of my heart function and make sure it’s healthy enough for chemo. It was a totally non-invasive procedure – they put the sticky nodes on my chest and then used an ultrasound probe positioned on my chest to get an ultrasound of my heart. No big. Honestly the worst part is when they pull the sticky nodes off! I also have a scheduled meeting with my onc’s nurse tomorrow and a port placement next week. If all goes according to plan, I’ll start chemo next Thursday (eek!).

Leaving the building felt surreal after the echo. Every once in a while I have these moments where I still can’t believe this is my reality. I still can’t believe I’m a breast cancer patient, that I had a double mastectomy a month and a half ago, and that I’m about to go through chemotherapy. Does it ever really sink in?

The cold cap therapy is still on my mind as well as I struggle with the decision to do it or not. I think what scares me the most and still makes me keep the option open is the possibility of permanent baldness. I will talk to my onc tomorrow to see what the real likelihood of that is. If it’s a very small percentage, I’m thinking I might ditch the cold cap idea. Too much hassle. If it’s a higher percentage than I expect – well, maybe I’ll say “bring on the brain freeze.” Why is this decision so hard?

Check out the video below on how to use cold caps. I’m researching all I can before making this decision.