Valentine’s-Thanksgiving Day

Klug and I were planning to celebrate “Valentine’s-Thanksgiving day” today because Valentine’s day hype is stupid AND he won a 12 pound turkey at a punk rock show (don’t ask).

Here she is.

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She came with the googly eyes. She was also dressed in a ripped rock ‘n’ roll tank top (this is how I know it’s a she). I tried it on, it fits me.. score!

So…right now, my Valentine’s-Thanksgiving day date is stranded out in Spencer, New York (redneck Tioga County mountain country), because his army truck broke down last night when he was delivering pizzas with it. He had it towed out to Spencer, where he’s now trying to warm up his little vegetable oil Volkswagen Rabbit truck.

I’d love to tell him to just stay out there and we will cook this huge turkey some other time! But no go… he has turned this day into a quest: “Klug against the universe-against-Klug.”

And he plans to win.

And I’m secretly (well ok… publicly) relieved because he thawed out that huge turkey and now someone’s gotta cook it. And I’d really like that someone NOT to be me. I’ve never cooked a bird. I don’t care. Don’t judge.

He just texted me that the car is started, and now we will see if it can move through the snow.

Dinner will be served around 11 p.m.

Or not.

 

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Diagnosed with Cancer? One Important Question You Should Ask Your Doctor

You were just diagnosed with cancer. Your doctor says you need surgery, chemo, and radiation. Well-meaning friends are sending you information about cannabis oil, dandelion root, turmeric, etc. You need to make a treatment decision without much time for research. Possibly for the first time in your life, you’re facing an actual life-or-death decision. Now is the time to know what questions to ask.

Something I learned from being diagnosed with cancer is this: We don’t know what we don’t know, therefore we don’t know what questions to ask. If fact, we don’t always know when a question exists! And this is dangerous.

Example: I read that cinnamon has many health benefits but it never occurred to me to ask which type of cinnamon. I didn’t know this was a question because I didn’t know there was more than one type! I bought organic cinnamon and guess what? It’s not the healthy kind from the studies, in fact, the cinnamon that I bought has studies showing it’s not super great for the liver. The questions you don’t know to ask, are the ones you need to ask!

“Do not seek so much to find the answer as much as to understand the question better” ~Fortune cookie wisdom 

So I’m sharing with you, a question that you might not know that you can ask your doctor — but you should.

Ask your doctor what the statistical chance of a recurrence is “specific to your pathology” for each treatment option you’re considering.

If your doctor recommends “surgery, chemo, radiation” — there’s still going to be a statistical margin of recurrence. In other words – no matter what you do, there’s a chance it won’t work, and if you do nothing, there’s a chance you’ll be fine until your 99. And just to complicate it more — the treatment has side-effects that, among other things, lowers your immunity whether or not it works. So you really ought to know your odds going in.

Since anything you choose is a bit of a gamble, learn what your odds are.

Your doctor will tell you the odds, but don’t assume it’s customized. It might be the general “one-size-fits-all” odds of recurrence and survival. However, if you ask, he/she can tell you what the chance of recurrance is “specific to your pathology.”
Make sure you see a chart, and ask if they input your specifications.

There are websites for doctors where they can input your age, gender, and exact pathology (type of cancer grade, stage, hormone positive/negative, etc.). This provides the odds “specific to you” of a recurrence for each treatment option. My oncologist brought up a chart and we compared the % of recurrence “specific to me” for the following treatment options:
1. Do everything; surgery, chemo, and radiation
2. Only surgery
3. Only surgery and chemo
4. Only surgery and radiation
5. Do nothing

Unfortunately, alternative/natural treatments are not well studied, so doctors cannot provide much information about how things like “going vegan” or “using cannabis oil”, etc., will effect your odds.

When I asked my doctor to check statistics specific to me – he was surprised and it changed my treatment plan!

One doctor told me I needed 12 infusions. Another told me 4 infusions. (If I didn’t get a second-opinion, I would not have known 4 infusions was an option!). My oncologist was encouraging me to have 8 infusions. I pushed back because I’d been told 4 by another doctor — so he looked it up and we compared my getting 8 rounds of chemo vs 4 and found there was a 1.4% statistical advantage with 8. (That’s DOUBLE the chemo for an additional 1.4% benefit). He was surprised it was that low and agreed that 4 rounds would be ok for me. Of course, I didn’t want any chemo, but my oncologist showed me there was over a 20% statistical advantage (I cannot recall the exact number now but it was in the mid-20s) to 4 rounds of chemo compared to none. Equipped with this information, I chose 4 rounds.

Don’t assume your doctor will check the statistics “specific to you” unless you ask. 

And don’t let the way the statistics are presented fool you.
Example: A typical treatment for estrogen positive breast cancer (after surgery, chemo, and radiation) is to take a chemo pill, like Tamoxifen, once a day for 5 years. I asked my oncologist what the statistics were for me, for taking Tamoxifen vs not taking it. There was a 5% advantage for me to take it. 5% means that for 100 women (with the same pathology) — 5 more will have a recurrence when not taking it compared to taking it. So I weighed my chance of maybe being one of those five women against definitely taking the pill everyday for five years.*

I also weighed into my decision other lifestyle changes that are likely closing that small gap — even if there is no data for it.

But there IS data for all the typical treatments. Before doing whatever the doctor says — make them check the data specific to you. Because when it comes to cancer, there are serious risks involved, both from the disease AND from the treatment. You’ll hopefully find more peace in knowing what the percentage of benefit is for you before making your decision.

*The statistics my oncologist provided for me, were based on cases of women with my exact pathology. It is important to note that I do not have the BRCA gene. Statistics for the odds of recurrence will be different depending on factors like genetics and pathology. 

Happy 2015

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Ithaca College Towers — not taken from our house, but this is the view from our house!

There you are again. Number 14 lit up on the Ithaca College towers. It’s been a year since we’ve last seen you.

As I review the events of 2014, my brow begins to furrow.  Damn… this year had some nasty bitch-slappin to give.

I started off 2014 with optimism. The shockwaves from the cancer diagnosis of 2011 had dissipated far off into the universe by then. The after-effects of 2012’s surgeries and chemo still lingered a little, but I fully expected 2014 to be the year that I would return. The year I would take back my life in whole.

Things didn’t turn out as I’d been hoping.

The short and dirty description of 2014:  Started of the year working out, detoxing, and feeling great. Adopted a rescue dog in March. Klug and I are both madly in love with her. After a regular MRI screening in April, I was misdiagnosed with cancer in my remaining breast which led to two surgeries, a mastectomy in August and reconstruction in November. And here we are in December. That pretty much sums up the year.

I’m skipping over a lot? Fill in the blanks with additional screenings, a biopsy, recovery time from surgeries, stress, tears, relief, anger, and the struggle for understanding and acceptance. But… this is life.

Here we are in the end of December, I still feel the warm glow of having spent the holiday with my family. I have found peace with the events of 2014. No cancer. New dog. New artistic journeys.

So I look to 2015 with cautious optimism. When the IC towers flip to “15”, I think I’ll just take it one day at a time.

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Family selfie, December 2014.

Six months of scans, scares, and new scars.

Six months ago in April, I had a routine MRI scan. It was time to check the implant that replaced my right breast as well as monitor my left breast.

The radiologist that read the scan rated the light spots in the images at a 5 and wrote “likely malignant.”

The images showed multiple lesions in my left breast which looked very similar to the multiple lesions found in my right breast back in 2011, which were cancer (and were rated lower, at a 4 and “suspicious”). This was not good news and my heart felt like it sank into my gut.

Following this MRI were several weeks of additional scans in hopes of avoiding an MRI guided needle biopsy. And it was also the beginning of a complicated 6-month emotional roller coaster.

It ended up that we had to go with the MRI guided needle biopsy. The biopsy came back benign. The relief felt from these results were short-lived since all of my doctors still believed it was cancer. My own research revealed that needle biopsy’s are not 100% accurate when they come back benign.

It really came down to those scans.

Even though I was aware that MRIs are known for false positives… the new scans looked too much like the old scans that revealed cancer.

A surgical biopsy is the only way to know for sure, but when you have “multiple lesions” the surgical biopsy becomes a mastectomy.

I spent several weeks tormenting over my options. Do I risk chopping off a healthy breast that I very much want to keep? Do I risk keeping the breast with no way of knowing whether or not it has cancer?

At one point, desperate to make peace with a decision, while sitting under some huge trees, I did what any sane person would do. I asked the trees what I should do! The following sentence immediately popped into my mind: “There is not one among us who would not sacrifice a limb to save the trunk.”

I eventually chose to have the mastectomy. Another mastectomy. A matching set of scars.

Then I got the phone call. Ready to hear the worst. Dr. Foster, my breast surgeon, told me that there was no cancer – not even pre-cancer – not even PRE-pre-cancerous cells. A tidal wave of relief and gratefulness! I asked her what the lesions were, that appeared in the scans, and she did not know.

We hung up. I sat there allowing the relief to sink in! Then I put my hand on my bandaged chest where my healthy breast was recently removed… and sobbed.

A few weeks later a woman who I’d come to love and respect, who had been diagnosed with breast cancer a few months before me back in 2011, and who had gone through treatments at the same time as me, died at age 39.

So there’s loss, and then there’s LOSS.

I will fast-forward… skipping over months of trying to come to peace with what was essentially a misdiagnosis and an unnecessarily mastectomy.

I am grateful to be cancer free. But the elephant in this room is that I was cancer-free the whole time and yet, I have spent the last 6 months dealing with cancer, sacrificing my body, my mental and emotional well-being, not to mention my job after taking so much time off for the two surgeries required. And even with good health insurance, my out-of-pocket amount is just short of $2000. Ha – and I have to pay it even though my doctors were wrong!

Sometimes you just have to say “yup, that happened” and think about something else.

Today I return to work. And today marks the end of the last six months. And I am healthy.

I’m no gambler

I don’t know when to hold em,
don’t know when to fold em,
don’t know when to walk away,
and sure as hell don’t know when to run.

I just had a mastectomy on Monday. The decision was based on MRI scans taken of my left breast in May. The professional opinions of the radiologist, breast specialist, and oncologist all believed the scans revealed cancer. Not a recurrence, but a new cancer in my remaining breast. I viewed the images and compared them to scans taken in Dec 2011. The images of my left breast in May 2014 looked a lot like the images taken of my right breast in Dec 2011. Not happy to see this since the right breast had been diagnosed with cancer which led to a mastectomy in 2012. Even after an MRI-guided biopsy came back benign in June, these three medical professionals still believed we were dealing with cancer.

So, based on my history, the scans, and the opinions of these professionals — I chose to have another mastectomy.

Pathology report is back and I just spoke to my breast surgeon.
No cancer!
No pre-cancerous activity. Not even anything PRE-pre-cancerous.

My initial reaction was of relief “Wow! AWESOME!! Really?!?”
Then I asked “Why did the MRI scan look like cancer?”
She said “Good question. I don’t know. We should try to dissect that.” I agreed to discuss this more in the future. Then we hung up.

And I just sat there stunned. I just had a perfectly healthy breast removed from my body. I felt like puking. I cried. A few people reminded me that I should be happy because it isn’t cancer. Of course, they are right! And I am very happy that it’s not cancer. But… it never was cancer. The last 4 months of scans and more scans and biopsies and decision making and guilt and anger and fear… and finally a permanent mutilation of my body…. was all done while I was cancer free. I won’t get summer 2014 back. It’s marked by cancer even when cancer wasn’t there.

Yes I’m completely grateful that there was no cancer in my left breast. I just wish I didn’t have to sacrifice my breast to learn that I could have kept it. How is this medically advanced?

I really just don’t know how I’m supposed to feel as I sit here with stitches across my chest where my breast used to be. Once my head stops spinning, I’ll choose a perspective that I can find comfort and peace with.

It’s too late to run.


New post: No regrets!

My mind is a traffic jam

I’ll admit it. Being stuck inside my own head these days is like being stuck in the middle of an inner-city traffic jam, amongst road-rage, sirens, and profanities. A bitchfest at best.

What I need now is stillness, quiet.

These days, the best way to quiet the relentless noise in my mind is to read the thoughts of others.

Two of my favorites:

“Out beyond ideas of wrongdoing and rightdoing,
there is a field. I’ll meet you there.
When the soul lies down in that grass,
the world is too full to talk about.”

~ Rumi

“Stop being holy, forget being prudent, it’ll be 100 times better for everyone.
Stop being altruistic, forget being righteous, people will remember what family feeling is.
Stop planning, forget making a profit, there won’t be any thieves and robbers.

Need little, want less.
Forget the rules.
Be untroubled.”

~ Lao Tzu

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I am my own punching bag

I’m facing mastectomy number two on Monday. If all goes well I will have a matching set in a few months. (See Benign Lie for the lead up)

I can’t help but notice how the experience is different this time.

The first time – shock and fear eclipsed all feelings to the point of being almost numb. Eventually confusion and determination took turns peaking out from behind.

This time there isn’t one huge dramatic feeling eclipsing everything else, what stands out is the storm inside with so many feelings at once. Disappointment is high on the list. Not as shocked but still dealing with fear — and being barraged by a whole slew of intense emotions.

My body feels like my own personal punching bag!

It’s too much to take in and I find myself focusing on work and home details for mental and emotional relief.

But I’m still stuck in my own head during the spaces between.

anger, regret, resentment, exasperation, rebellion, confusion, stress, anxiety, sadness, sorrow, depression, defensiveness, helplessness, tiredness, desire, hopefulness, determination, focus, scattered, irritation, combativeness…. and fuck it

I’ve decided that “fuck it” is an emotion.

Okay thank you for listening during my lunch break. I’m going back to work now to get outside of my head for some temporary relief.