My bio-port

Today I am once again bandaged, in pain, very itchy, and looking extremely unfashionable as evidenced by this photo:

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These bandages are covering a fun little device called a port, which was implanted under my skin yesterday during a surgical procedure where I received so many drugs, I was knocked unconscious and now, thankfully, remember nothing. Many people don’t know about ports, or why they’re needed. Well here I am, your friendly cancer patient, to give you the 411.

As mentioned earlier, I have tiny veins. This can make it difficult to get access, and I have the most revolting, grotesque, horrific bruise currently on my arm to illustrate this fun fact. Because of the specific type of cancer I have, I will be receiving chemotherapy, followed by drug infusions, for over a year. That much poking over that much time could cause some serious problems. I wish to avoid these problems. Hence, the port. (I act as if I had any choice in the matter. I had no choice. But I like to pretend that I did.)

The port is a small device that is place near the upper chest under the skin, via an incision. Another incision is made, which is where the tube/catheter is inserted. This tube connects the port to a vein near the neck which ends near the top of the heart. Just typing that out makes me want to vomit. Moving on.

When I receive chemotherapy, drugs, blood draws, etc., they will access the port, which means no more searching for veins in my arms. So technically, this should be a good thing. Today, however, I am not such a fan, as it is causing severe pain all around the surgical site, and into my neck and shoulder. It kind of feels like a gun shot wound, except that I have no idea what that feels like, so I can only assume I must have been some sort of Bonnie and Clyde-type outlaw who was shot, in a former life. Naturally. It is also making it difficult to lift anything with my right arm. I learned today, after attempting to eat spaghetti with my left hand, that ambidexterity is not a skill I will be adding to my resume any time soon.

Because I don’t possess a great deal of fat in my upper body, my port will likely stick out under my skin, and be visible. Since I can’t see it yet, I’m hoping it is not completely hideous. I’d like to think of it like a bio-port from the movie Existenz, which will allow me to enter some exciting virtual reality game. Maybe Jude Law will be there. Maybe we’ll go on thrilling adventures. Maybe it will all have absolutely nothing to do with pumping toxic drugs into my body and making myself ill.

Maybe.

A day in the life

People often ask me what my day was like, and I usually say something like, “Had an appointment, eating dinner now” because it can be tiring to actually go over all the details of each day, with each person. But I know some people are genuinely curious as to what happens when I go to all these exciting appointments. So here was my day today:

I drank a huge, disgusting cup of barium sulfate. This was in preparation for a CT scan later in the day. It was orange flavoured, the type of flavour that tastes nothing like an actual orange, but you know that that is what it’s trying to be. Not very pleasant.

My brother shows up. Then my mom shows up, not knowing my brother is over, and I make him jump out of the shadows and scare her. She screams a good horror movie scream. This was by far the highlight of the day, although I’m really hopeful no permanent damage to my mother was done.

Off to the hospital where I take a number to do some blood work. Then over to put my name on a waiting list for an ECG so I can wait for that at the same time I wait for the blood work, because I’m sneaky like that. A nurse in the ECG area tells me she can just do my blood right there. I say OK, although I feel a bit uneasy about this weird change of events. Should I trust her to take my blood, even though she’s not from the blood lab? Is this against protocol? Will the blood lab people come yell at me for letting her do it, like a child taking candy from a stranger?

She takes my blood. She pokes around a bit and has some trouble and makes comments about the small size of my veins. She pokes some more and takes her sweet time and keeps commenting about the difficulties she is having. After she finally finishes, she asks me if they know what’s wrong with me. Yes, breast cancer. She shakes her head and looks sad and mentions how young I am. She means well, but I don’t appreciate those types of reactions. I move on to the ECG.

I lay down and get a bunch of electrodes attached to my skin. I feel like I am in some sci-fi movie, although I can’t remember which one. The technician does something and prints out a piece of paper and it’s done. No pain involved, which makes me very happy. We chat for a bit, and he is nice. I can tell he feels bad for me, but it doesn’t bother me as much. Probably because he didn’t prick me a bunch of times with a sharp needle.

I wander around with my mom for a bit. We go meet my study nurse and I fill out some forms about how much pain I’ve been having, what kind of pain, and many other questions of the sort. I realize I have been feeling pretty good. I also feel a bit sad over the realization that my answers will likely be a bit different the next time I answer those exact same questions.

I check in for my CT scan and drink the second half of the pasty liquid. I change into a hospital gown. I loathe hospital gowns because I instantly feel like just another sick person when I put one on. I go into the room for the scan, and the technician tells me I will need an injection. More pokes. I tell him it has to be in the same side I just gave blood from, as I have had lymph nodes removed on my other side, and therefore should avoid any injury to that arm. He tries to insert the needle in a new spot. He fiddles around for awhile, and I think the injection is over. That was easy, I think. Wrong! He missed the vein. Poked the wrong spot. It hasn’t even happened. I am getting tired. And a bit frustrated. And my arm is starting to swell.

He eventually gets it right and I do the scans. The injection puts a metallic taste in my mouth. I hear a calming robot woman’s voice: Hold breath. Breathe normally. Hold breath. Breathe normally. I wonder if I will receive some sort of award for my excellent ability to hold my breath, and then breathe normally.

I don’t receive any such award. Instead I bring my arms back down, and see blood all over. Is that normal? I ask. I’m pretty sure that is not normal. I’m pretty sure I will try to get a different technician the next time around.

I meet my mom in the waiting room, and we are both unhappy to see the blue bruising beginning on my arm. It hurts, a lot. I go home and hold some frozen carrots on it to ease the swelling. These carrots have been sitting in my freezer for ages. I have no idea where the frozen carrots came from or how they got there, but today they finally seemed to serve a purpose.

And there you have it! Always exciting, never dull. The life of a cancer patient.

My brave face

Firstly, I just want to thank everyone for your support and kind messages after my first blog post. In less than a day, my little blog has made its way around the world, with over 1800 views. New Zealand. Venezuela. Japan. Latvia. Italy. Ireland. Apparently cancer makes you pretty popular. I don’t know who many of those people are, but whoever you are, thanks for stopping by and I hope you continue to do so.

The past few months have been very difficult, to say the least. After my diagnosis, I wanted to kick and/or punch all the happy, healthy people I saw on the streets (don’t worry, I didn’t). Why was everyone just going on with their lives? Why was the world oblivious to what I was dealing with? Why didn’t time stop? I had to make decisions I never thought I would have to make. I had to navigate the world of cancer and oncology, becoming somewhat of an overnight expert on a subject I’d rather not know so much about. I lived a double life, as I juggled endless doctor’s appointments and tests and scans with my regular job, without most of my colleagues realizing I was often answering their emails while sitting in a hospital waiting room. Getting poked with needles, something that used to terrify me, became just another day, another poke. I underwent major surgery, and as a result, major pain. I stayed up at night, overwhelmed by everything I still had to deal with, and wondered if I would be okay. I cut off my long, thick hair, in preparation for the chemotherapy side effects I will have to face very soon. (Although, while it lasts, it turns out I quite enjoy my new ‘do.)

It has been so easy to fall into the “Why Me?” spiral. Why is this happening to me? What did I do? Why not that person, or that person? I don’t drink. I don’t smoke. I don’t party. I sleep, a lot. I am an extremely boring, responsible person. I always have been. My husband says, it’s just bad luck. And he is probably right. There is no good answer. Shit happens. Shit happened to me. And now I’m getting through the shit. (Sorry, Mom, for swearing so much.)

People keep saying how brave I have been. I don’t know if I feel particularly brave. I have cried. A lot. The thing is, you can’t cry all the time. Sometimes you just have to laugh. And I have done a lot of that too. I am so grateful for the people in my life who have made me laugh (even after surgery, which hurt like hell, but I laughed anyway because I’m a rebel). Cancer has taken a lot away from me, but it won’t take my humor.

Yes, I have a crappy disease. Yes, I am pissed. Yes, I would prefer not to be dealing with this right now. But ultimately, I am still me. I still laugh. And I still do things like this:

The other side of the rope

Here’s the deal:

A few months back, I found a lump in my breast. Where the hell did it come from? How did I not feel it before? I showed my husband. I showed my sister. I googled “what does a tumour feel like”. Despite all I read that told me lumps are common and are most often nothing to worry about, I was worried.  I started to panic, naturally, as I always do because that is just the way I am. I’m Jewish. I’m neurotic. Being anxious is in my DNA.

The next morning I called my doctor’s office and was able to see her right away. She felt it. She was certain it was nothing. It had the feel of something that was nothing. But best to be safe and get an ultrasound. So I had an ultrasound. The radiologist thought it was a bit suspicious. So I got a mammogram. And a biopsy. I started to panic, again. Why were they taking a biopsy of my perfectly normal lump? What did they see on their screen? The technician told me it would take about a week to get the results. “Try to enjoy your weekend,” she said, “It could be nothing.” It could be nothing? I wanted to smack that woman. But I refrained, found my husband in the waiting room, and burst into tears.

Anyone who has had a biopsy can tell you that waiting for the results is the most awful part. I slowly started to lose my mind. All I could think about was that lump. That stupid lump. I called my doctor’s office and tried to track down my results. The more days that went by, the more anxiety I felt. Finally I heard from my doctor, who said she would be getting the results in a few days and that I should come in to go over them. Why did she want to see me if she didn’t have the results yet? Was this normal protocol? Did she know something already? WHAT IS HAPPENING?!?!?!

That weekend, I participated in a walk for breast cancer that my family does together each year. Yes, that’s right. I surrounded myself with breast cancer while waiting to find out if I had breast cancer. At the closing ceremonies, when all the cancer survivors walked in (including my dad!), I high-fived all the women who walked by. There was a rope between us, and as I reached over to touch their hands and saw their tears of courage, I began to cry too. No one would have noticed, because it is a highly emotional event, and there were tears in many eyes. But I cried because I suddenly was struck with this overwhelming realization – I would likely be joining them on the other side of that rope.

On September 11, 2012 (and yes, I was not thrilled about the negative connotations associated with that date) my husband and I made our way to my doctor’s office. She chit-chatted a bit, and then got down to business.

“Unfortunately, I don’t have good news today. The biopsy showed that you have cancer.”

What.
The.
Hell.

My lifelong fear was actually happening. I was being diagnosed with cancer. Many, many years before I ever expected to hear those words.

My doctor, who is wonderful and patient, sat with us for 2 hours. I have no idea what we talked about. Every once in awhile I heard a word. Oncologist… chemo… children… aggressive… cancer… cancer… cancer. I stopped breathing for a few seconds. I floated out of my body. I floated back in. I called my dad and cried and told him to tell my mom, because I couldn’t handle it. We left the office, stunned and exhausted. I messaged a couple close friends: I have cancer. Fuck. I emailed my boss: Unfortunately I just found out I have cancer. I don’t think I can come into the office today.

And that was the beginning.