Following Up

January 26th, 2016

Happy New Year! It’s been over seven months since my lumpectomy re-excision  and I’ve been on Anastrozole, an estrogen inhibitor, for 14 weeks now.

I can say that my energy came back to it’s pre-surgery levels in recent weeks. Once again, I most often feel happy and excited about my life and my work. I reduced my work load and that seems to be for the better. I don’t make as much money, of course, but I can be more deeply focused in my three remaining roles: Wife, Painter, Yoga Teacher. (Not necessarily in that order–it’s not a linear thing. I think about them more in a circle than a line.) There is peace there.

To further reduce stress in my life I have decided to go to battle less often. I let things go which I would never have let go pre-cancer. Mostly it is a decision in relationship, “Do I want to be right or do I want to be in relationship?”. More and more often I choose relationship. It’s an art form. I make a decision to let something go and then my job is to keep reminding myself that I let that go for my health. It is like training a dog: Distract & Redirect. I can only imagine that this makes me an easier person to be around.

I am very much relieved that I have not gone through severe menopause symptoms with the estrogen-blocking Anastrozole. I had a few mild hot flashes in the first month but didn’t notice any greater difficulty with sleep. I do feel, though, that I’ve been catapulted into the next decade. I’m an early sixty-something and seems to me that I’ll look like a seventy-something within the year. When I look in the mirror in the morning I can’t really grok how much older my face looks. Also, weight gain. Those hard lost pounds are nipping at my heels and, at this point, gaining on me (pun intended).

Problematic, more these days than cancer, is the A Fib issue. I’m left to wonder if a lack of estrogen is contributing to this. It seems to be getting worse and is a drain on my energy.  The last few days have been peppered with long (over an hour) or short (10 minutes or less) of atrial fibrillation several times a day but they are milder episodes. Metoprolol often has no effect, so instead of daily, I take it when I’m at my wit’s end. Sometimes that works. Like most mysteries, time will tell on this one. (Yes, I’m in the care of a cardiologist.)

I’m told that I’m due for a mammogram in a couple of months. I can’t imagine allowing them to squeeze my still-tender right breast into that machine. I think I’ll have to pass for awhile. Since my tumor did not show on a mammogram (Do I sound like  broken record?) I’m ok with a breast exam (last month’s really hurt, “I’m sorry, Sweetie!”) and, if it’s offered, an ultra sound.

This update comes late because my interest in writing is waning. It’s funny how I really needed to write to process the ordeal of cancer. Now I feel the need to shed that and move forward.

Thanks for listening. Please feel free to share this with anyone interested in my experience of dealing with breast cancer in the year 2015.

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With Great Trepadation

arimidex10:30pm, 10/25/15

I just popped my first hormone blocker. My oncologist told me that it wouldn’t be out of the ordinary to expect it’s side effects to be much different than my experience of menopause. Menopause was pretty horrible. I await the results and will keep you posted as things progress. I’d really like this to work. It only improves the chances by about 7% but I’d take that (if it doesn’t make my life a living hell).

I’m working on my optimism.

worth waiting for

October 9th, 2015

I saw my oncologist last Thursday. If you ever find yourself with a cancer diagnosis in your lap–and I hope you don’t–do call Dr. Lindsay Rockwell’s office. If you get an appointment toward the end of the day, prepare to wait in her office for up to an hour. I believe that this is because she thumbs her nose at the insurance-based 15 minute appointment. Counseling people through their cancer treatments takes more time than that.

Dr. Rockwell began by checking… Did I decide to skip the booster treatments? No, I told her, I’d done one out of five of them. She continued by assuring me that I’d received the proper dosage of radiation. According to Dr. Rockwell the body/mind often has the best answer. If it was that much of a struggle for me (apparently it was in Dr. Bornstein’s notes) that struggle would have lead me to the correct answer.

Heavy sigh. A note of sanity in an otherwise seemingly insane world.

Last night I had a dream about a body decaying. Mostly I was taken by the acrid odor emitted from that process. Later in the dream I was in a hospital and I needed to take my medications. For this dose I was to take all of them together dissolved in cleaning bucket full of water. I began drinking from the spout end, then slowly realized that this is a cleaning bucket from a hospital. How much of this did I want to drink? I realized I had a choice. Thankfully, I stopped before the bucket was very empty. That’s what our current cancer treatment is like. We all know it, whether or not we have to utilize it. Maybe that’s the reason we feel so bad when one of us is diagnosed. Please don’t misunderstand, I’m very thankful to (most likely) not die from this cancer. I just see room for improvement in our treatments.

We all hold our own correct answers. It takes courage and care to come up with our best shot. And, now and then, we get someone from that world who straddles both worlds and applauds our efforts to stay healthy as we get healthy. Lindsay Rockwell is one of them.

So, there’s that.

It’s a week later now. I finished radiation five weeks ago. Here’s how it looks now: I still need to take it easy. If I work too hard or long or don’t get enough rest the whole radiation site is sore and painful. Surprising, shooting pains kind of painful. But for the most part I do get enough rest. The skin burn is subsiding nicely. The bumpy, itchy rash is about half gone. (That, by the way, is only in areas which had previously been tanned and not in areas that never saw the light of day.) I feel well enough to return to my usual oral dosage of vitamin e. They’d told me to stop taking it because it was contraindicated with radiation treatments but they didn’t tell me when to resume. I figured that if my body is healing so well to this point on its own, a little help might speed things up, so began again about a week ago.

To wear a bra or not. That’s always been my question. I tried wearing one yesterday. Larry and I are on “staycation” and we were traveling locally… I just wanted to dress up. It did not work out so well, so that’s left to another time down the road. I am looking forward to being able to wear one when I want… Like to be in front of a yoga class. It doesn’t fit like it did, of course, but I’m sure I’ll get used to that in time. Asymmetry is the new me. I’ll learn to balance it.

This whole week has been a time to both catch up and relax. Until early this week, my house hadn’t been properly cleaned since February. I like living in a clean house! It’s so comfortable! Unless I’ve been traveling, I don’t think I’ve ever taken a week off of painting. It’s a good thing to do. Having to fulfill obligations during treatment was more than I wanted to do. Now they’re all done and no one’s really expecting any work from me until next fall at this point. I’m hot on a new trail of daisy paintings. Here’s my first finished one:Daisy-Symphony

I’m looking forward to working on these friendly and fascinating flowers but it can wait a week. I’m catching up on my real relationship with my husband. We’ve been in a state of constant inhale for so long now. I think we finally had a few relaxing and long out-breaths.

These are the quiet moments between treatment modalities. They get better each time. In a couple of weeks I get to begin hormone therapy. More on that then. I gotta go relax.

come help me celebrate!

My buddies and I have been planning and executing this exhibit for many months. I’m so happy that it falls at this time in my treatment. I really feel like celebrating!

Come to LC&A this Sunday for the reception of our select and talented group’s exhibit. I’ve named it GCC Painting Buddies but from the feedback I’ve gotten on the show thus far, that’s a very bad name because it connotes a student show. This is not that. It’s a group of very seasoned and very talented painters. And they’re fun! And we share such mutual love and admiration after years of painting together.

Daylily-Trip-size

My latest in a growing series of large florals. You’ll see it first thing if you enter the central door of LC&A.

4-6 Sunday, the 13th of September
The Barnes Gallery at Leverett Crafts & Arts
13 Montague Road, Leverett

I will be nursing my tender right breast but in full celebration mode. I’d love to see you there and show you two huge paintings of mine plus stuff in process and many other things we’ve all done.

Done.

I’m done with radiation. I graduated myself out of there today.

I was met by Dr. Bornstein at the beginning of today’s treatment. First off she addressed my eye. It’s a bloody mess in the outside quarter. I spent last evening in tears which probably made it more vulnerable to the itchy-eyed allergy attack I had and I ended up bruising it by rubbing it. She said that since my eyesight was alright I shouldn’t need to see an eye doctor for it, it’ll clear up in time.

Then she wanted to let me know that these boosters are a series in and of themselves and can be stopped at any time. So I did.

Ta da!

Duped

9/10/15

Wow. Yesterday was a bad day. This morning my eyes are still puffy and swollen from it. I think it’s time to “pick myself up, dust myself off and start all over again”. But I’m not sure how to proceed.

After yesterday’s radiation treatment we ran the dry run for the final five booster sessions scheduled to start today. It was then that the understanding of radiation was finally undeniable.

In my mind the intention of the angle of the machine was to miss my lung and cleanly target my breast. Now, with this boost, all that was being trashed as they aimed a beam about two and a half inches in diameter–with a dosage almost as strong as was used for the whole breast–at the tumor site head on. I panicked. I asked, “How long will this treatment take to administer?” The answer was about sixty seconds. That’s twice as long as the last ones. Of course it is… It’s almost as much radiation but to a smaller area. This answer did nothing to settle me down.

After I left the building I realized that I could not get back there the next day without more information. When I got into town I called Dr. Bornstein’s office and told Sally that I needed to talk to the doctor because I wasn’t sure I could proceed with treatments. She put me on hold for a few, then came back and said the doctor would talk to me tomorrow “if I wanted” before treatment. I asked if I should come in early. She said that I could, “if I wanted”, come in a couple of minutes early. Woah. I said, no, I needed to talk to her today. So she said she’d have her call me toward the end of the day.

Now I’m not a doctor. I don’t hold people’s lives in my hand. I’m a yoga teacher and I am more sensitive to people’s needs than that. I felt disregarded at best. This is like Alice in Wonderland minus the wonder… No, this is Aging New Age Hippie Visits Establismentland. Or tough love for the tender of heart. This sucks, no matter how I name it.

So Dr. Bornstein did call me. She was obviously not in the mood to do any hand holding. I said I didn’t know if I could go through with the boosters and she said, “Well, then your done!” Not helpful. You know those instances when you’re engaging with someone and they’re not listening, they’ve got an agenda and even though you’ve got information they need to go forward they won’t stop talking? This was that. But I had prepared the questions I needed to ask and I just got to them. Here are the answers: Dosage: 200 as opposed to 260 for the whole breast. Course of treatment: No, we can’t “go back to the original plan of 30 treatments” because that would have been a different dosage and it has its own booster at the end as well.

Then the question of hitting my lung. The answer went like this:”Oh, we’ve already done that!” It was like she was delivering great news. I heard, “Not to worry, we already radiated your right lung for 16 sessions because of the angle we needed to come in at, so this is only icing on that cake.” I was stunned.

I’M USING THIS LUNG, PEOPLE!!! This lung never did anything to anybody. Nor did the ribs.

Now let me be as clear as I can in my muddled state: I know that I must have been told this in all of the information I was given to prepare me to make the decision to embark on this course in the first place. I do feel duped. But I also feel that it was my own panicked mind that did the duping. It’s true, what the Buddhists say: The more tactics we employ to avoid suffering the more we suffer.

So the doctor told me that I didn’t have to do the booster sessions. When pressed, she said it might give me another couple of percentage points toward the cancer not returning. She also said it had no bearing on my survival rate. I don’t want to do them.

Then there’s the problem of delivering that news to my beloved. I could already feel the argument starting, the tension building. After my yoga class, which is to say; after my heart fell open, I decided that I had been pretty self centered and selfish in how I was thinking unilaterally and decided (as an act of selfless love, in the name of peace) to give Larry the decision if he wanted it. I gave him all the information he needed and asked him to sleep on it and let me know in the morning. This morning he said that, ultimately, it’s my decision but he feels that I should finish what I started. Yep. That’s my guy.

In this moment, I think that I’ll do today’s and tomorrow’s sessions and then call it quits. I can’t actually drive myself there. I did have volunteers to drive me. Thank you to those of you who stepped up. It’s a much needed service. I don’t know what it’s going to be like to be in that room with that beam. I can’t imagine it. I’m so afraid of it. This is life right now. Thick, slimy, greasy, ugly life. It’ll pass.

Past the halfway mark

9/6/15

radiation treatment table

The real deal. That’s my mold of head and arms awaiting me.

“Susan Valentine, 6-30-54, right breast.” That seems like my new mantra. I’m required to recite those facts each time I enter the radiation therapy room. As much as I’m averse to the repetition, it’s nice to know that there’s something I can do to assure that they’re giving the correct treatment to the correct person.

I was awake earlier than I like today. I rolled onto my right side and was jostled awake by dull pain in my radiated breast. It doesn’t like to bear any weight. Things are heating up; getting swollen and sore. There is a definite and geometric patch where radiation has reddened the skin on this quarter of my torso. It’s somewhat tender and always wants to be cooled and aired. I’ve been advised to go topless as much as possible and that makes sense to me now.

It’s below the skin which fascinates me more, though. No one mentioned anything about what might happen below skin level. Probably because there’s no treatment for that. It’s different there now. I can feel tightness, soreness, tenderness. All those healthy cells taking a hit for ill ones. Seems a shame. Like they’re civilians caught in a war zone.

I believe my new skin treatment also treats me below skin level: I mix emu oil with arnica cream. The emu oil is new to me and just great for keeping things moisturized without any petroleum elements. I owe my daughter, Emily for turning me on to that. Word has it that it’ll penetrate very deeply and help the arnica to travel down with it.

I have Labor day off from radiation. So nice to have three days to recoup. I go back for one more treatment at the current dose, followed by five “booster” treatments. This is what will allow me to have twenty-one treatments as opposed to 26 or so. It’s also why I plan to take a week off from teaching between series. No doubt I’ll be sore and tired. I hope that’s enough time. As it turns out my last treatment is also on the last day of this series of yoga classes; September 18th.

While yoga is ever-so helpful–moving lymph and keeping freedom in my range of motion–the heat that builds and the friction from clothing is irritating. But it’s a small portion of my day and, so far, well worth the down side. The gathering of yogis around me is so healing. This is a powerful group we’ve gathered over the years.

Today is my 12th wedding anniversary. I so love that it falls right in the middle of a three day break from radiation. Larry and I are spending the day together. We visited the Skinner House this afternoon and got the larger view of our beautiful valley. Then stopped for an awesome beer (woah, try that one!) before heading home for a nap because my energy wanes easily these days. (Oh, and beer.) Dinner will be at The Farm Table, in Bernardston, because it’s been there for years and we’ve yet to eat there. We were married in Bernardston, so that’s a nice connection. So, yes, there is still energy and the will to celebrate life and love. I’m feeling very grateful today. I hope your Labor Day Weekend is as lovely.