How do you tell your partner, parent or child that you have cancer?


th image credit: Good Search

If you’ve ever been re-diagnosed with cancer, how did you tell the people who were by your side through cancer before?

Some people openly talk about the concerns they have when they find lumps or bumps. I guess the atmosphere is set up for this a bit more when you live with a partner, parent, or child. Other  patients bring another person with them to every doctor appointment, or at least the ones they know they’ll be getting information that could change their life.

If you go to the doctor alone, and get the news, “you have cancer” or, “cancer is back” — how do you tell your partner, parent, or child? How do you tell your best friends? There’s something that seems to shift when it’s the second re-diagnosis; the third time of cancer.

It was the hardest thing I can recall ever sharing with my parents. It took me weeks to tell each of them, and a month to share with friends, and only as we’d plan to get together for other reasons.

If you’ve been tapped on the shoulder by cancer again, maybe you need to sit with the information before sharing it with others—who’ll seem to take it personally, and who’ll look at you genuinely hurt, shocked, and confused. These are the people you’d never in a million years set out to hurt. They’re the one who’ve pulled for you, and rooted you on during cancer the first, and second time. They celebrated your triumph, and closed the door with you on any thought of cancer coming back. They believed in you when you said, “I’m cancer free” and ” I’m done with cancer.” These people still believe in you. And for me, that’s why it was so hard to tell them—again.

A while back I wrote a post called, “Don’t let the diagnosis kill you.” I wrote it before I knew anything of my re-diagnosis. It’s been a great reminder for me when my mind strays to dark territories. We all die at some point. That’s the thing about life: You can’t get out alive. But that doesn’t mean we (with or without cancer) can mope around about the card(s) we’ve been dealt.

Look around you. You have awesome people in your life. You are loved. And by many people, you are loved unconditionally. Think of that! without conditions. Wow. Take it in. Breathe in life. If you’ve been re-diagnosed, I’m sorry. It’s tough on the psyche as well as the body. But hold your head high, tell your loved ones when and how you can. Keep in mind, you’ve had more time to absorb the news than they have.

I’ve always been a staunch believer of telling the truth, and in some cases, that means just telling it quickly. I didn’t see this one coming: I was visiting my dad. I thought we had 45 minutes together and alone before we headed out. When I went to confirm, he said, “No. We’re leaving in 10 minutes.” Oooo, not in my plan. I was waiting for my way-too-hot oatmeal to cool down. I still needed to put on make-up, and brush my teeth. I put down my breakfast spoon, mainly to ensure I didn’t fling oatmeal anywhere, and kept one eye on the clock.

I quickly apologized for the timing, and for the news itself. “—I have bumps again. Cancer is back.” My voice started to crack, but I was able to rein it right back in. We didn’t have time for my that, and it would only hurt my dad more, seeing me drop into a puddle of tears over something he couldn’t do anything about. His head lowered. I could see he was going into analytical mode. I picked up my spoon, and began shoveling oatmeal into my mouth, keeping my eye on the clock. “Sorry. It’s sort of complicated. They’ll do more testing, and I’ll keep you updated. I wanted to tell you face to face.”

Done.

I got up to wash my bowl, put on make-up, and brush my teeth. We left on time.

Wherever you are on this journey. Peace.

 

Metastatic Cancer.


Crunchy on the outside; chewey on the inside

image credit: Good Search

Before getting into the post—what’s worse, a camel biting your head off, or your sister laughing at your plight? This picture reminds me that fretting about cancer is rather silly. I mean, now I’m lookin’ over my shoulder for camels in the office on Wednesdays! Heads up!

The appointment after I received the negative biopsy results, I got the bone density scan and blood test results. The bone density scan came back showing lower levels of bone density—and the blood test came back showing elevated calcium levels. Those are two contradicting results, and neither is a result you want to hear.

Those opposing results led my oncologist to order a bone scan, which showed a dark mass at my sacrum. To be sure it wasn’t a hairline fracture, I had some x-rays. Good news, no hairline fracture. My bones are in great shape. So, the next step was a bone biopsy.

The following week, it was a matter of listening the “It’s cancer” all over again. The options, the statistics—the whirling noise in my head, searching for answers, and a way out of this situation.

My doctor hoped I was a candidate for two trial studies. I wasn’t accepted. The first one would require chemo right off the bat. Patients who’d had prior chemo, and experienced neuropathy, weren’t eligible to participate in this study. That was me. The second study didn’t accept me because they were looking for patients who’d been on a medication that hadn’t worked. (We soon learned “a” meant “one” medication. I’d been on two that hadn’t worked.)

There is a third study I did qualify to participate in. I’ve declined to take part. For me, the side effects, the odds, and the requirements of participants weren’t a trial, but a sentence. (Can you tell I was called for jury duty recently?)

Diagnosis isn’t always black and white


ButterfllyIguana

image credit: Good Search

If you’ve ever had a biopsy come back negative, and not one, but two surgeons come in the room for “the talk”—then you know sometimes a biopsy can show a negative result, but come back positive after further testing. Unfortunately, that “further testing” is often after surgery, and chopping body parts off, one by one isn’t the ideal way to become cancer-free.

For the past few months, I’ve been in the been in the process of being re-diagnosed. Borrowing from sophisticated theory: if it looks like a duck and quacks like a duck, chances are it is a duck. The only difference in this case is, tests have come back negative. So, technically, it’s not a duck—or cancer. Most people would be doing the “happy dance”—and in the past, I would have done it, too. The only thing stopping me is my memory.

The first time I had cancer, the biopsy test came back positive. I didn’t believe it. I didn’t trust the medical field much, either. During treatment, I required another biopsy, which came back negative. The medical staff didn’t trust the test results but they gave me the option to leave the bump alone, watching it, knowing I may return someday for it to be removed. They also gave me the option to go ahead and have the second bump removed along with the originally planned surgery for the removal of the first tumor. I opted to have a two-for-one surgery. Tests run after surgery came back positive. It was cancer, but had tested negative before surgery.

Two years later, at my last appointment with the surgical oncologist who removed cancer the first time, saw a bump near my collar-bone. It tested positive. New treatment for cancer began, again.

Another two years down the road: I see bumps that look like cancer, feel like cancer, and are located in similar places, just a little higher up. But, tests have come back negative.

So, What does one do in the meantime? Here’s what I suggest: keep a (positive, strong) song in your heart, whistle a happy tune, and think, do and be kind.

—Oh, and maybe that’s what we all should do—before, during and after any type of diagnosis.

 

TKI1258, BKM120, trial studies for metastatic breast cancer


There are two studies currently looking for participants. If you are a woman with metastatic breast cancer, and your oncologist hasn’t mentioned the studies to you, bring it up with them. I know the studies are being done nationwide right now (fall 2013). I was expected to begin pre-trial base-line markers this month, but I am not in the studies, after all. More in next blog about that, but I wanted to get this information out to those interested.

One study, TKI1258 (TKI) is a multi-center, randomized, double-blind, placebo controlled, phase II trial. It’s being evaluated for the safety and efficacy of TKI in combination with fulvestrant – also known as Faslodex (a shot). The trial will be of post-menopausal women with Her2, and HR+ breast cancer that have evidence of disease progression on or after [one] prior endocrine therapy.

The other trial study, BKM120, is a phase III randomized, double-blind placebo controlled study with BKM120 with fulvestrant. The participants will be post-menopausal women with hormone receptor positive or Her2-negative, locally advanced or metastatic breast cancer which progressed on or after aromatase inhibitor treatment.

There is expected to be 150 TKI and 1,060 BKM participants in the multi-center studies in the USA. Both studies are by the pharmaceutical company Novartis. The hospital where I go was looking for five patients for each study. If you’re interested in the study, look into it. It may take them a while to find matches.

Talk with your oncologist. Good luck!

Taking a Break


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Hi!

I’m taking a few weeks off from posting on this blog. In the meantime, if you want to check out my other blog, Spirit and Money Matters, posts will be there.

Also, Facebook page, Cancer What to Do or Say will still have some posts.

Thank you!

If the shoe fits (autobiography in five short chapters)


walk image credit: Good Search

I love this poem. Whatever your current situation, this may fit. Maybe you’re upset over something, maybe you’re just ready to approach life from a new angle. (How about a TRY angle?)

If you’ve been re-diagnosed, and are in the sad, angry, or why-me stage, this could relate to cancer. It’s not making those emotions wrong, it’s giving you the opportunity to choose empowerment. And it’s okay if you don’t choose that right away. Emotions must be payed attention to, or they will move from whisper to scream, and that will affect your health even more.

If you’re a caregiver, the poem could be for how you play your role. Cancer is a heavy load to walk with someone. Note the word with. You alone, cannot carry this load. Share it. Ask for help. Give yourself “me” time. Lighten up. Love yourself.

Put on your walking shoes…

Autobiography in five short chapters

by Portia Nelson

 

CH 1

I walk down the street.

There is a deep hole in the sidewalk.

I fall in. I am lost…I am helpless.

It isn’t my fault.

It takes forever to get out.

 

CH 2

I walk down the same street.

There is a deep hole in the sidewalk.

I pretend I don’t see it.

I fall in again. I can’t believe I’m in the same place.

But it isn’t my fault.

It still takes a long time to get out.

 

CH 3

I walk down the same street.

There is a deep hole in the sidewalk.

I see it is there.

I still fall in… it’s a habit.

My eyes are open.

I know where I am.

It is my fault.

I get out immediately.

 

CH 4

I walk down the same street.

There is a deep hole in the sidewalk.

I walk around it.

 

CH 5

I walk down another street.