Category: Living with Cancer

May 07 2012

How Breast Cancer Changed My Life – guest post

Okay, it’s been almost a month since my last confession, er, entry.  Time goes so rapidly now.  I work five days a week.  I know a lot of people do, but I have been off for seven years thanks to cancer and stem cell transplant.  My mother moved in with us after her fall in March.  I have had the grand-kids a couple times a week.  And Spring came early here in the midwest.  We have a huge garden that was already threatening to go to weeds.  I bought 130 bags of mulch last week.  So I have been weeding, feeding, digging, spraying, planting and transplanting, mowing.  And this is not to mention building a 16′ x 7′ trellis along the English garden and a matching structure across the yard for a swing.  I’ll try to do better.

Readership is still steady – around 300 visits a day.  I am still avoiding moving my site to a cloud and upgrading my blogging software.  For the past couple of months I have depended upon readership and notices of new blogs.

The latest is from Andrea Hutton, author of “Bald Is Better with Earrings.” Here is a taste of her writing.  She writes as Bald is Better with Earrings – your breast cancer companion

How Breast Cancer Changed My Life

I know, I know – so cliche. The thing is, though, last week I was interviewed by my local paper – The Santa Barbara News-Press and at the end of the interview, the woman interviewing me asked, “How has having breast cancer changed your life?” I answered,”In every single way.”

I’ve been thinking about that for about a week, and it’s true. Having breast cancer changed all of me: body and soul. It’s not that I’ve changed my life. I still eat way too much chocolate, watch tv, read the same newspapers (including the News-Press – yes, I’m shamelessly pandering). It’s more that I have been changed.

Let’s start with the obvious – my body. I lost those pesky 7 pounds I’d been fighting for years. Nothing like a little chemo diet to get you started. And of course, the more obvious – I’m not only minus those 7 pounds, but a breast as well. No, my breast did not weigh 7 pounds – I wish! My hair might have though. It was pretty darn thick and luscious. As you know from my previous posts – not so anymore. Now it’s thick and kind of like a poodle’s. I also sport a Port-a-Cath in my chest near my collarbone for easy infusion and blood draw access. Yup – I’m very accessible. In addition, one of my toenails has never quite recovered from it’s bout with chemo and at any given moment, I’m likely to burst into flame from the early medically-induced menopausal hot flashes. That’s just the outside.

The less obvious – I slowed down. Almost every breast cancer survivor whom I’ve met has said the same thing. It’s not that I changed my religion, or found yoga (in fact, I hate yoga). I didn’t give up coffee or anything else, for that matter (except Diet Coke – my son made me do that). I just found that I can enjoy a slower pace now.  It’s not exactly – take time to smell the roses, slower – but it’s different. Life is short and that stupid, pink, ribbon-wearing elephant takes up a lot of room in my house and mind so there’s less room for clutter.

When you undergo treatment for cancer, people always say, “You’re so strong.” Or, “You’re so brave.” The truth is, most of us are strong and weak, brave and absolutely terrified. And that’s okay. We learn the truth about ourselves in those dark moments – and sometimes the truth about those around us.  I dealt with some of it well, and some of it horribly – just like everyone else. I definitely learned how to say, “I’m sorry.” That and, “I have to lie down.” Not entirely sure which one I said more.

So, when we moved to heaven – otherwise known as Santa Barbara – I could walk on the beach, collect sea glass, and be happy with that. For the first time, I didn’t feel like I had to be outwardly productive all the time. It turns out quiet time is productive too, but it was during my year of nothing-but-cancer that I learned that. When your life is filled with doctor’s appointments, blood tests, infusions, and side effects, you simply don’t have the time to do everything you used to do. So you learn to do less, and that seems to stick.

Then there’s the not-so-obvious. I became a writer. My first blog was on www.caringbridge.org and was just to keep my friends and family up to date on my treatment and progress. Then I realized that all the information I had gathered along my breast cancer road needed to get out there. I wanted to share all the tips and hints that the amazing doctors, nurses, survivors and my own research had taught me. Never in a million years did I think I could write a whole book. Turns out – I can. I hope it gets published and out to the women who need it some day, but at the very least, I learned I can write.

Cancer changed my family as well. I won’t speak for them (because they hate it when I do that) but, without a doubt, we are all changed.

~ from Bald is Better with Earrings – your breast cancer companion

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Apr 10 2012

Honoring Mary – guest post

Renn just passed her first year anniversary as a breast cancer blogger.  In this post she honors a fellow traveler whose journey had recently comes to its end. Renn writes at The ‘Big C’ and Me

HONORING MARY

Another bright light has been extinguished by breast cancer.

Mary (aka MBJ on BCO) has died.

Doctors gave her four months. She was gone in six weeks. Her passing has left the online breast cancer community at a loss for words.

Cancer is some scary sh*t.

I feel a need to honor this lovely woman who was so generous in spirit and insight; who always had a kind word to spare no matter where you found yourself on the breast cancer path; who so readily shared her own pain in the hopes that it might help others. And she helped so many others.

Mary was just two years out from her initial breast cancer diagnosis when she developed constant shoulder and arm pain. Several doctors told her she had a frozen shoulder; another said she had nerve damage. Mary herself suspected that maybe she tore a muscle or ligament. She received cortisone shots and some physical therapy, but the pain never went away.

Mary was also uninsured. She waited months for an MRI appointment (which, ironically, is tomorrow). When she was finally (correctly) diagnosed in early February (yes, just last month), doctors sent her home with hospice. She died six weeks later. She never had a chance. But you do.

If there is a lesson in this loss (and dare I say this may well be Mary’s legacy), it is this: If you have nagging pain, get it checked out. Now. Doesn’t matter if you have cancer or are just afraid you might. Our bodies are very wise. They talk to us all the time; but we don’t always listen. And even when we do, sometimes the medical profession doesn’t. Sometimes, they get it all wrong. Like they did with Mary.

How can we honor her life? By listening to our bodies, speaking out on behalf of our discomfort, and not taking no (or “I don’t know”) for an answer.

And listen to your gut. If what you are hearing from a health care professional doesn’t sit well with you, keep shopping — until you hear something that does.

R.I.P. Mary. (To hear her lovely singing voice, visit the website her husband created for her here.)

from~

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Apr 06 2012

A Mad Cancer World – guest post

This one comes from a young woman diagnosed with AML, acute myelocytic leukemia.  She writes at Girl With The Swirl

While I’m not caught up in ad world, I’m trying to take more small walks. Here’s the current predicament, which is pretty minor in the grand scheme of things. I’m pretty sure I have muscle atrophy from completely suspending all my physical activities I used to do 8 months ago + 2 1/2 weeks of solid bed rest have now left me tired and sore from being in the same positions. It’s like my bed has a crater and I’m a moon unit officially parked on it. So in my attempt to get rid of my muscle soreness I try and walk, but I get quite tired from lack of activity, so I can’t push myself a lot otherwise the artery in my neck feels like it’s going to burst. Lol what a joke I feel like right now. I could start physical therapy when I have built up enough stamina, says my oncologist. However, since I’m pretty familiar with how to work out, stretch, and build muscle I can do it myself. I just need to be extra slow working into it.

I had a good phone conversation with a friend I made in Moffitt while I was there in August and September. We both shared our “war stories” of hospitalization in the past week. I completely hate we’ve (ESP they) gone through rough times dealing with our health provider staff and system. It’s such a frustrating, helpless feeling when you feel things are going wrong with your treatment (which has been rare in my case) and you have no impact on changing it, or you’re too damn fed-up with it all, you have no choice with it but to go with the flow. I can’t even describe the level of stress a patient feels walking into the hospital some days. You’re thinking about annoying problems like the previous paragraph, to someone next to you telling you they’re terminal, tracking down insurance and providers regarding billing errors, what your blood levels are, am I going to have an 8 hour day here, am I eating enough, do people think I’m just on vacation and I’m not really sick, what if cancer ever comes back, how long is this going to take for me to get back to normalcy? I mean, you name it, I think it goes through your head. I’m currently trying to not freak out on my insurance company who is trying to dodge payment and pass onto me. My parents have been a godsend about this issue. I would be totally clueless with how fogged up I have been on medication to figure this all out. I’m so glad I got that paperwork in order days after I was diagnosed that made them legally allowed to handle this stuff with me. They’ve been here a month. Can you believe that!?

from ~

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Mar 26 2012

Life in the Slow Lane – guest post

Here is a blogger from “down under”. In her email Liz wrote “I’m writing to you from Australia’s ‘Top End’. I’ve just started a blog called ‘Paw Paw Salad’ about living with breast cancer, and life in this part of the world (I was diagnosed only a short time after moving here from the Big Smoke – it’s been one hell of a journey!). This site is a great initiative – I’ve already had fun checking out different blogs, and plan to do much more. I’d love it if people popped in for some ’salad’ and to say hi! Cheers” ~Paw Paw Salad

Life in the slow lane.

As a young girl, I was a good swimmer.Tall and broad-shouldered, I became the girls’ swimming captain of my primary school and local district. My coach wanted me to take it further, but I quickly became bored with training sessions and left the squad. As an adult I’ve been a sporadic lap swimmer, but could keep up a strong breaststroke for as long as I wanted to whenever I gave it a go.

Now I’m on orders to swim. Like many women with breast cancer, I’ve had lymph nodes removed from my armpit. This tends to cause shoulder tightness, and creates a risk of lymphoedema in the arm, an extremely unpleasant condition in which lymphatic fluid accumulates and causes swelling. My OT has told me that swimming will improve ease of movement and will stimulate my lymphatic system, encouraging the remaining nodes to take on an extra workload.

So I dig out my board shorts, tie a supportive bikini top over my reconstructed breast (wondering nervously how swimming will feel with an implant), pull on a rashie vest and head to a place that I’ve been wanting to visit. Nightcliff Pool is situated near the edge of a cliff overlooking the Beagle Gulf, which separates Darwin from the Tiwi Islands. It is surrounded by palm trees, and their fronds toss wildly in the hot Wet Season winds as I arrive. Gazing out to sea, I feel like I’m about to swim at the very top of the continent.

Sliding into an empty lane, I do a lap of breaststroke, then one of freestyle. My shoulder feels stiff, and seems to click a little while pulling through water. The scar under the implant is sore. I feel like I’m swimming so slowly that I’m barely moving at all. I do one more lap of breaststroke, one more of freestyle. I try to keep my kicks steady without worrying about motion, focusing only on keeping afloat. Since diagnosis, it seems that every bloody thing is a metaphor.

After a paltry four laps my shoulder is tired. An elderly woman says that my lane looks like the right one for her, and I suppress the urge to explain myself to a stranger. I try to pull myself up onto the edge of pool, but my shoulder won’t allow it. How can this be me? I duck dive under ropes to reach the ladder, and glance at the clock as I climb out. I have been exercising for less than ten minutes. The drive to get here took longer than my swim.

Feeling embarrassed at the prospect of walking out past the chatty pool attendant so soon after arriving, I sit down to dry out in the sun. A man is running a swimming class for preschoolers. He is encouraging a nervous little boy to rest on top of his arms and be dragged through the water, while putting his face in for a few seconds. Gathering his courage, the boy lies on the outstretched arms and tentatively dips his goggles as he is swished along. The beaming instructor lifts him gently onto the side and raises his hand for a high five saying, “Who’s the star, hey? Who’s the star?”. And for the umpteenth time since this all began my eyes suddenly fill with tears.

[With thanks to Jessica Stanley for the lovely photo!].

`from

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