Port installation

If you are undergoing long-term chemotherapy like I am, it will be necessary to have a port (or port-a-cath) installed. Chemo drugs are highly toxic and damaging to veins and tissue, so long-term treatment is very hard on these parts of your body. Ports allow health care providers to administer drugs more efficiently by tapping almost directly into the heart - drugs are flushed quickly and efficiently through the circulatory system with little chance for damage to your veins.

A port is a small disc made of plastic or metal roughly the size of a bottle cap that is placed beneath your skin. It is usually implanted in the area just below the collar bone on the side opposite the breast with cancer. A soft thin catheter extends from the port to a large vein near your heart. Nurses will administer your chemotherapy medicines by inserting a needle right into the port and then connecting an IV line to your pouch of drugs. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.Click here to find out more about ports.

My port is a power port. The nurses love my power port. It has three little bumps on it that help them easily locate the injectionable area. But I really wish someone had told me about the bumps soon after the port was inplanted. I didn't notice them until several weeks after I'd had it - at about the time the swelling was starting to go down. But, of course, I didn't occur to me that the bumps were there intentionally. I don't know about other cancer patients, but my experience has been that I no longer give anything the benefit of the doubt. Every itch, twinge, tickle and creak in my body is directly related to SOMETHING VERY VERY BAD!!!

Me: WTF are those bumps? Come feel this! Jon, WTF are these bumps? Is it broken?! Where did they come from? They weren't there yesterday!!!!! WTF? WTF? WTF? WTF? (insert sound of my voice steadily getting higher and more screechy)
Jon: It's probably nothing. Let's ask the doctor. 
 Me: Probably nothing? Probably nothing?! How do you know that? This doesn't feel normal. WTF? Feel them! They weren't here yesterday! They're wiggly. It must be BROKEN! They must be poking out because something has come undone! Oh, god. What happened? How did it break?

...ok - I'll save you the whole freak-out session. But I seriously put the freak in freak out. Turns out, the bumps are a good thing. Who knew? Note to self - stop imagining the worst.

Ports are installed in simple day surgery. Mine was installed in the same exam room in which I had my surgical biopsy - just a wee room with a nurse, a bed and some tools. Warning - I received no sedation. The area was numbed very nicely with a local but I was just as aware for this procedure as I was for the biopsy. Now, it wasn't as stressful - 'cause, like at this point I know that I have cancer so I've already sort of gone to 11 on my stress meter - but it was disconcerting. There was no real pain, but the feeling of my surgeon making a pocket for the port using his thumbs was, um, gross. But get this - when he was finished he smiled and had the nurse confirm how long it had taken (I forget now but it was mere minutes). And....YES...he installed it in record time! Apparently the day before the same procedure had taken much, much longer; the patient was larger and that makes the procedure more challenging. Surgeons like it when they can be in and out fast. And, let's face it, he's a guy so he likes the competition, even if it's against himself.

After he was finished, he gave me some instructions for care and signs to watch for that would indicate infection. Then he smiled :-) and said, "You can manage the pain with Tylenol."  Now according to the link I gave you above, it seems to be standard in the States to manage the pain with a narcotic like Demerol. But you have to love Canada. So, in the days following implantation, I can best describe the pain as being akin to having been punched repeatedly in the same spot on my chest by someone wearing a cocktail ring. Or maybe being pummelled again and again by a seven year old with a mittful of Lego. You get the idea. So, he's right - I was able to manage the pain with Extra-Strength Tylenol - it sort of took the edge off.  And the pain started to subside after a week or so.

The port has been great. I was worried at the beginning that it would be difficult to manage seatbelt or purse straps, but I now no longer even notice it is there. Unless, of course, one of my kids gets overzealous and smacks me on it. (Are you starting to wonder about what goes on in my household yet?) The nurses flush it regularly and it has never given me a moment's pause.

Plus, it gives me that cool cyborg look that I just know is going to be the next big thing. Watch for Lady GaGa to be sporting one in her next music video.

Chemo and your nose

Just a heads up to those of you about to be or in the midst of dealing with chemo, it can wreak havoc on your sense of smell. I had the misfortune of receiving treatment during the H1N1 outbreak last fall. On the one hand, I was happy to get scooted to the front of the line for vaccination because of my weakened immune system. On the other hand,  I was ill-prepared to deal with the smell of most hand sanitizers. It was horrific. The slightest bit of artificial perfume made me want to vomit and then hurt people. One day I walked from room to room pitching the little plastic pump bottles in the garbage, "Get it out of the house...GET IT OUT OF THE HOUSE!!!!!!"  only to later fish them out so we could donate them to a less smelling-impaired household.

So, fair warning, please do not use scented lotions, soaps, body sprays, antiperspirants, dishwashing liquid, detergent or the like. You will thank me.

And since I just mentioned antiperspirant, I thought I'd include a link to the US National Cancer Institute's fact sheet responding to questions about the possible link between use of antiperspirants or deodorants and breast cancer. In short, there is no conclusive evidence of a link and studies have provided conflicting results. Yippee. If you are concerned, speak with your health care providers and consider opting for natural alternatives.

As an aside, I never ever had much of an issue with underarm odor and so was not a daily user of these products. It is very unlikely, in my opinion, that they had any impact on my tumour growth. For my thoughts on that, stayed tuned for my future posting where I take on my probable breast cancer risk factors (moderate alchohol consumption, early menstruation and delaying of baby-making till after 30, I'm looking at you!).

Looking for a Canadian resource? Check out Rethink Breast Cancer

Rethink Breast Cancer is a Canadian, volunteer-driven, registered charity working to help young people concerned about and affected by breast cancer. They provide innovative breast cancer education, research and support programs. Visit their website to get access to, among other things:

The Underwire is Rethink Breast Cancer's newsletter. Published four times a year, The Underwire provides up to date research on diagnosing, treating and preventing breast cancer, as well as other news for people affected by breast cancer. Lots of very good, current information.

Breast Cancer Now What
Popular British Columbia sex educator Saleema Noon spoke at a cancer breakfast I attended soon after my diagnosis. Her breast cancer was diagnosed when she was in her mid-30s, newly married and planning a family. She was a perfect example of how younger people with breast cancer usually have a different set of concerns than those fighting it later in life. You may be undergoing treatment while attending school, starting or building your career or raising small children. To help young people connect with and support others going through the same thing, she suggested Rethink Breast Cancer's program Breast Cancer Now What. Visit this site to learn about current research and connect with others on the discussion board.

Tell Her 2 connects Canadians affected by HER2+ breast cancer. Share your story and read those of others. Find current information on estrogen positive breast cancer and then give or receive emotional support and inspiration.

Cool diversion

Some days it can be hard to be inside my head with "the cancer." On those days, I look for a way to get outside of my brain. Here are a few sites I turn to to help me think about better things.

Kiva - Kiva connects people who want to help with people who need help - in the form of microloans. As of November, 2009, Kiva has facilitated loans totalling more than $100 million. Kiva makes it so easy to connect your desire to help with someone in actual need. See how it works here.

Color Me Katie - Katie Sokoler is a freelance photographer and street artist in Brooklyn. The joy she injects into life around her makes me want to be a more creative and spontaneous person.

Nienie - Stephanie Nielson and her husband survived a plane crash, but the road to recovery is long and challenging. Her blog covers every step on that road, with much humour and grace.

make something - crafty list of things to do Karyn owns the Toronto shop the workroom where you can take classes, sew by the hour on her sewing machines and sergers, and more. I can't visit her store but I love scanning through her running list of "things to do" to find inspiration closer to home.

not martha - Megan talks about crafting, cooking, blogging, technology and more...and takes damn good pictures of all of it. She's in Seattle and I love finding out what we should check out the next time we visit.

dooce - Heather Armstrong writes about being a mom, wife and blogger. She survived post-partum depression, became a succesful auther, got a show on HGTV, drinks good bourbon and takes pictures of her dog Chuck with things balanced on his head. Why are you still reading my blog when you could be reading hers?

Stretching your dollar

From time to time, you will notice me recommending products, books, clothes and the like - things on which one might spend money. Let me say up front that I do not advocate the LET'S SHOP FOR FUN! philosophy that some bloggers do. I believe that rampant consumerism is a huge problem in today's society, leading people to submerge themselves in debt and our landfills in junk. And, if you are someone coping with a chronic or life threatening illness, you have likely taken a financial hit. Now more than ever we must make careful choices on how we spend money.

If you have to spend money, do it mindfully. That means shop used (Craigslist, garage sales) before new, and reduced (sales, liquidation stores) before retail. Buy local before imported and quality before crap. And do your research first. That means reading comments from previous buyers when you buy online and checking out performance reviews on sites like Consumer Reports, Cooks Illustrated and Epinions. If you are looking at a site like Etsy for quality, handcrafted art, clothes and gifts, remember to checkout the feedback left by previous customers.

Please know that if I recommend a product or website, I strive to follow these rules. And when I learn about new and better ways to help you save money, I will pass them along here.

And for the love of all things holy, please don't let all the fashion, home decorating and beauty websites feed any sense of dissatisfaction with yourself or your life. Be happy with what you have, or get crafty and make stuff you love. Plant some seeds, paint a wall, frame a child's artwork. Stop letting people sell you things that they think you need. Take back control of how you spend your money.

PICC insertion

Because my oncologist was in a hurry to begin my chemo treatments, he ordered the insertion of a PICC (Peripherally Inserted Central Catheter) immediately. Then, given I was going to be receiving infusions for a year (chemo followed by Herceptin), I would have a port surgically implanted at a later date.

A PICC is inserted in the arm opposite the breast with cancer. The tube is inserted in a vein in the arm and advanced through increasingly larger veins until the tip comes to rest near the heart. A tube extends from the underside of the arm, above the elbow, and the chemotherapy drugs are infused through that tube. By infusing the drugs almost directly into the heart, the toxic chemo drugs do not damage the veins in the patient's arm, a significant concern with long term chemotherapy. Instead, they travel immediately to the heart which flushes the drugs into the body quickly with little damage to surrounding veins. In between treatments, the tube is covered by gauze and plastic dressings. Home care nurses monitor the PICC, flushing it freqeuently to ensure the line is clear and monitoring the entry point for signs of infection.

Given the stressful event that was my surgical biopsy, I was worried about the PICC insertion. I needn't have.

The wonderful woman who would be inserting the PICC was gentle, clear and informative. She guided me through the procedure using diagrams, checking often to ensure I understood what would happen. She also outlined aftercare and how I would need to adjust my life to accomodate the PICC. I would not be able to lift anything heavier than 5 pounds, so she ran through ways I would have to adjust how I managed my two young boys.

Then she gave me advice that, at first, shocked me. But in the months since then it is advice that has helped me again and again. It was bad, she said, to hold my breath. Holding my breath would put too much pressure on the PICC tube and could cause problems with it. "When you need to cry, you must cry. Don't hold it in." She locked eyes with me and did not look away until I had nodded. This was the first health care professional who had acknowledged that crying...fear...sadness...would be part of living with cancer. It was a remarkably empowering and moving moment.

Then I put on a gown, was settled on the bed and  met the nurse who would be assisting. And we were off. First up, "What do you think? You look like a Nora Jones person. How would that be?" Are you kidding me? With that, the stereo was turned on, the lights were dimmed and we were underway. It took most of the album to complete the procedure, but it was painless and stressless. Compared to the surgical biopsy, it was like going to the spa. (And for, like, a happy procedure like a scrub or massage rather than a bikini wax.)

The after care was the problem. Because chemotherapy is very hard on your body, you can develop skin sensitivity. This happened to me. Never one to have any skin issues at all, I was dismayed to learn I had developed a sensitivity to plastics and latex. The plastic dressing over my PICC led me to break out in a dreadful rash. The nurses needed to replace the plastic dressing with gauze and paper tape and I needed to be vigilante about the use of any more plastic dressings during any form of treatment. Other than that, the main concern was keeping the dressing dry. I could not shower or bathe without covering the dressing with plastic. Typically, I used (and reused) disposable plastic shirt sleeve protectors, purchased at a local Japanese dollar store, Daiso. Sort of like a gator for your shirt. I also used plastic bags, opened at both ends, along with elastic bands and additional tape to ensure a tight seal.

Living with the PICC was not a huge challenge. But it was inconvenient. It is very hard not to lift your children, laundry or groceries. Pretty significant shifts needed to happen in my home. I could not do yoga, swim or bike ride. Sleeping was really uncomfortable. And the rash made my arm sore. There was a significant concern that the rash could lead to infection. Luckily it did not. But I knew there was no way I could do the entire year's worth of treatment with the PICC.

And luckily I didn't have to.


Up next - port insertion. :-)

Summer dishes on the horizon

Find a balance between eating food that's good for you most of the time and food you love a little bit of the time. Win-win when you find food you love that is good for you. I'm picking and choosing from the list below over the next month, with an emphasis on lots of lightly steamed or raw vegetables with every lunch and dinner, and small portions of desserts.

Doris Day's popovers - normally, I would slather them with butter and jam or honey, but now I`ll have them with fruit salad and plain yogurt...and leave the slathering to the kids. From Delicious Days.

And the healthier breakfast choice - Multigrain Waffles from 101 Cookbooks. 

Dips, dips and more dips - get your veggies in with this selection from Apartment Therapy's The Kitchn.

Carrot Salad with Harissa, Feta and Mint from the Smitten Kitchen is a nice match for flank steak. I love flank steak. I really do. Here's Mark Bittman's recipe. :-) I love Mark Bittman. Did I say that I love Mark Bittman? I really do. It's ok - my husband loves him, too. And flank steak.

I`m getting my omega 3`s from Cooking with Amy`s Slow Roasted Salmon. I don`t think you have to use Copper River salmon. :-)

Lentil Artichoke Stew; Cucumber, Mango and Spinach salad; and Green Goodie Smoothy - three cancer fighting recipes from dieticians with the Cancer Project.

Sour Cherry Slab Pie from the Smitten Kitchen, last year.

Looking for something to do with all this year`s great rhubarb? Rhubarb Tart with Lemon Verbena at Chocolate and Zucchini, Rustic Rhubarb Tarts at the Smitten Kitchen and Roasted Rhubarb from Orangette look great (and if you need a giggle listen to Orangette's Molly Wizenberg's Spilled Milk podcast on the lovely fruit...uh...vegetable...uh plant.)

Olive Oil Cake, because I'm dying to try this Kim Boyce whole grain flour cookbook. From the Wednesday Chef.