Wednesday, April 10, 2019

The Great Before

My great "before" was the afternoon of Saturday, November 10, 2018, when I felt a breast lump. By the following Thursday, November 15, after mammograms, CT scan and biopsy, I started living my "after," with a diagnosis of invasive lobular carcinoma, which accounts for only 10% of all breast cancers.

It is now five months later. Five months after the diagnosis, four months after the lumpectomy, about two months after completion of radiation, and one month after beginning medication I will probably be on for the next five to ten years. Right now I'm on tamoxifen. It was one of two medications recommended by my oncologist, the other being arimidex. They each target different things. They each have potentially serious side effects. Hot flashes? Likely. Joint pain and stiffness? Again, likely.  Endometrial or uterine cancer, stroke, blood clots, osteoporosis, among others....possible.

After I told my oncologist that Mark and I were planning a trip to Washington DC the end of May, and planning on a lot of walking, she didn't want to start me on arimidex because a side effect is very painful joints. But I know ultimately, that is her recommendation down the road because of some of the long-term studies, even though at the same time she acknowledges that my "absolute benefit" isn't that much different between the two. To this point, I have had no side effects on the tamoxifen. Not even hot flashes. But something else to be concerned about--studies are showing that the more hot flashes a woman has, potentially the greater benefit of the medication long term. So...I wonder, is it even working?? Should I make the decision now to change to the other medication? I know we will revisit the options at a later point. If there is one thing I have learned, it's that every woman reacts differently--side effects and outcome--which makes the decision all the more complicated for me. I want to be on the medication that gives me the best result for the longest time possible. Which no one, even my oncologist, can predict.

Because when it comes right down to it, it's a numbers game.

Our daughter-in-law, Christa, sent me a link to a podcast the other day, and I highly recommend it. The podcast is Everything Happens with Kate Bowler, who was diagnosed at age 35 with stage 4 colon cancer. In the episode "This is Going to Hurt Just a Little," she talks with pediatric oncologist, Ray Barfield. Dr. Barfield says that cancer has a special status in our culture, even though cardiac disease is the #1 killer. It's hard to make decisions. There is uncertainty and it has to be acknowledged. What day is it? Mark the date. What decision can we make that we would be okay with, looking back, that we made the best choice based on what we knew at the time. Mark the day that we make the best decision we know how to make.

Stop overthinking.

Lately I have viewed my life somewhat like a play. "Cancer" auditioned for a part. I didn't like the character it played and I wrote it out of the script. However, I can see it lurking there off stage in the curtains. It won't go away. I know it keeps hoping to be part of the play again, maybe with a bigger role this time, maybe playing someone more evil.

 Susan Love, M.D., who has writen comprehensively on breast cancer, says that using the warrior or battle imagery for dealing with a cancer diagnosis "...implies that we have more control than we actually do. Yes, we can make the best decisions and get the best medical team we can, but we can't will a cure, and those who die of the disease are no less worthy than those who survived. Rather than a battle, it is more like surviving a natural disaster like an earthquake. You did not cause it, but you may have contributed to the collapse of your house by not having built it to code. And then you fix it as well as you can, but it is never the same." Collateral damage.

After reading that the American Cancer Society recommends no more than two drinks per week, unlike the American Heart Association which says that wine can be beneficial to your heart, I have pretty much stopped my near nightly glass of chardonnay. And I'll admit, there are nights when not having that glass of wine makes me kind of whiny. But that is about the only thing I have found that gives me any potential control over my "after."

There was a time, early on, when I felt like a cancer "imposter." I only went through lumpectomy and radiation. No chemotherapy. No hair loss. No real "suffering."  I'm incredibly grateful that I didn't go through the suffering part.  It was caught early and was small. I have a good long-term prognosis. But I no longer feel like an imposter.

Do you have a great "before"? It doesn't have to be cancer. There are a lot of things that divide our lives into the great before and what becomes our after, the new normal. We hope we make the right decisions. But if there comes a time when we need to make a different decision, then mark that day and make the best decision we know how to make.


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Robby said... #

The best decision we know how to make, so tricky sometimes. But as my mother often reminded her HS students, not making a decision is making a decision. So, we do make the best decisions we can if we're people who want to actively participate in our lives. I have a "before", too. Mine is something that may always just be a worrisome inconvenience, but each time I see my specialist doctor (who is a positive and brilliant woman)it includes a few days of worry as part of my "preparation" for that appointment. I think whether we worry or not it is as much a part of who we are as those same cells that make up who we are. I'll leave you with this story. I was bemoaning to my husband how much I dislike having a specialist doctor for this "thing" in my life. He waited a beat and then said, "Still, it's better than having a parole officer." We laughed and went in to the appointment. Here's to the best decisions we can make, may they serve us well.

Carla said... #

Such a thoughtful post, Cindy. You are a very wise lady. May the Lord completely heal you, my friend.

Jenny said... #

Hi there, I also was diagnosed with lobular breast cancer, and like you had lumpectomy actually two as they found another bit, plus radiation. Please don't feel a fraud because you didn't have chemo and lose your hair. Every cancer diagnosis is life changing and frightening and we have to live with the consequences for a long time.

Seems that the more common type is ductal cancer. So I read your post with interest thank you for your honest post, and best wishes from New Zealand.

Charlotte M. said... #

Cindy, thanks for your thoughts on this. I too, sometimes feel like an imposter. And I did chemo, radiation and a full on left side mastectomy.I am doing well. This summer will be 5 years since my diagnosis. I am on Arimadex and have virtually no side effects that I can tell. You are right, every patient is different. This is a club no one wants to belong to. I pray that you and I and others like us survive for the long haul. Bless you friend. said... #

Cindy-I am heading towards 6 years out...every time I get a call-back it is gut wrenching. They are now going to use the 360 degree machine on me yearly. I was told that I have to be on meds for 10 years (& believe some think that it should be life...we shall see). My son always thinks POSITIVE Mom! when I get those call-backs & not to tell my 100 best friends (:) ) even though you would love their prayers. Peace-have been reading your blog for eons now...Susan

Needled Mom said... #

Well written, Cindy. I continue to keep you in my prayers.

Anne / Springleaf Studios said... #

Thank you for sharing your feelings and thoughts with us Cindy. I honestly don't know what to say. Hearing your story helps me to realize this isn't something that is ever 'over' for those who go through it. My mother had breast cancer twice in her life . . . 50 years apart. She was a tough lady who never let much show on the outside so even though I was there to support her I could never know what all she experienced.

OPQuilt said... #

Thank you for sharing your thoughts with us about this event that hit your life with a thunderbolt. I now know that everyone gets the equivalent, only many run from it and don't take to heart the lessons it has to share. It's lovely to hear about the lessons you have learned.

PS. GIven the most recent finding about the harmful effects of drinking...glad to hear you are limiting your wine. I want you around for a while.
PPS. You can have any of my hot flashes you want. I have extras.

Heidi Staples said... #

Great post, Cindy, really great. There are so many befores and afters in life as we go from one thing to the next, aren't there? Thank God that He stays the same. I look out my window every night before I go to bed and see the stars in the sky, and I remember those verses that talk about how He knows all the stars by name and not one of them is lost. If He can keep track of all those billions of stars, then He won't lose us either. Love you, friend...

Susan said... #

Beautifully said Heidi.