Archives for posts with tag: survivorship

The “new normal” is a term used to describe getting back into a “normal” life after going through cancer treatment. I know a fair number of breast cancer survivors who hate that term. (“Survivor” is also another term with its own controversy, but I digress…) Cancer changes everything. How can anything be normal again?

I understand the complaint but I don’t share it. “Normal” means something different to me, anyway. It just means the mathematical average. (Remember, I am a nerd.) Yes, I grew up in a culture where “normal” means “good” but I was trained out of that in my education and in my clinical work when a kid says, “I just want to be normal” he/she is often really talking about feeling disconnected from others. Teens also want to be unique, special, which would be not being normal. Teens want a sense of an individual identity but they don’t want to be alone.

We are not unlike teens in this regard. They are just navigating a stressful period of growing up so there is drama surrounding the very basic human needs to have a balance between separation and connection.

It is nearly four years since my breast cancer diagnosis. I do feel that I’ve achieved a “new normal”. The new normal is knowing that life can change in a heartbeat, knock me into the air, and down to the ground. I can have up’s and downs and boring aspects of my life. I know that I can grow through grieving. I know that I can cultivate patience. I know that throughout my days so far, I can usually remain connected to my sense of self. I know that the person who is flying in the air is the same person as the one who usually has her feet firmly beneath her.

One of the most powerful lessons of my “new normal” is to take opportunities for joy and happiness when I can.

That’s today’s “new normal”. Tomorrow may be different.

I attended a professional workshop last month on mindfulness. There were a number of exercises, one of which was a 30 minute long body scan. Afterward, we discussed our physical sensations as well as the overall experience in a small group. In a body scan, one focuses on and notices one body part at a time, moving to different locations in the body. I shared the observation that when we were instructed to focus on our torso that I found it difficult to shift my attention from the parts of my body that are numb from my mastectomy and reconstruction. One of the women in our group said to me, “I’ve been through that. I had a mastectomy 20 years ago. I thought my life would never be the same. But I don’t even think about it any more.”

I know that she was trying to be encouraging but my first thoughts were, “Wait a minute! You can’t take my cancer away from me!”

I hate that I’ve had breast cancer but I love how I changed my life in reaction to it. I don’t want my life to be the same as it was before. I want to stay mindful and appreciative of the preciousness of life. There’s only one person who could really take that away from me and that person is me.

I’ll keep doing my best to keep myself in line.

 

I had a wonderful three day weekend with my family at the beach. That is, during the day. Saturday and Sunday nights were full of nightmares. As I mentioned yesterday, three years ago yesterday, I was diagnosed with breast cancer. I had a wonderful day yesterday, during the day. Last night I dreamed that I had a scan and that there was evidence of a recurrence. I spoke with a radiologist on my dream phone. I can’t remember quite what he said, but I recognized it immediately as a segue to bad news. I told him, “You are saying that to tell me that my cancer has come back!” He admitted that he had. Healthcare professionals, for the record, I am also a deliverer of bad news. I know your tricks, especially when it is  dream and my unconsciousness is writing the story.

In the dream, my husband looked at a written report and in a tone that communicated a lack of sufficient concern, he said, “It says here that it is an 18 meter mass.”

I grabbed the paper and saw that it said that it was a .18 meter mass. “Oh my God, John! It’s a .18 meter mass, not an 18 meter mass! That means it is a 1.8 centimeter mass NOT 18 METERS!”

(Dream mind does not always move the decimal point correctly, I admit. I also think dream mind perfectly illustrated the most stupid of the stupid marital disagreements, the one that MISSES THE POINT. I have DREAM CANCER GOD DAMMIT! Stop fighting with your husband. Neither one of you know how to treat DREAM CANCER!)

People, you get it. My brain is working crap out. Mom, if you are reading along, my brain needs to work crap out. I am doing my very best to keep the crap to a minimum. It is easier during the day time. I had a wonderful day yesterday and a wonderful today. I have less control over the worlds that my brain creates in my dreams.

This year was easier than last year. Perhaps next year will be easier than this year. Healing is a process that is approximately linear over time. But it has its fits and starts.

This morning, John and I took a walk on our own. That time together, along with the sweet historic buildings, and the beautiful farmland, did much to quell the nightmares.

I wish I did not still have them, but I do.

I am, in sum,  a pretty happy person. It has been awhile since I let the fears in my nightmares ruin my waking hours. I didn’t do that today, either.

Living with the uncertainty of life, the horrible, the traumatic, all of the things that I have experienced thus far, for me, is not about pushing it out of my mind. I can’t! My mind does not work that way. If I can’t notice both the good and the bad, I can’t help people as a psychologist. I can just spout platitudes that are not true and do not honor the hardship that many people experience.

And if I don’t notice and validate the good and bad in my own life, I can’t live with the kind of truth that gives me a sense of purpose and integrity.

I need to notice and remember in my life. But I’m living, too.

And pretty darned well if you get right down to it.

My selection of a  Boho Chic outfit thumbs its nose at nightmares!

My selection of a Boho Chic outfit thumbs its nose at nightmares!

The gentle farmland is decidedly not nightmarish.

The gentle farmland is decidedly not nightmarish.

Even pink, in its original form, is not scary to this breast cancer survivor.

Even pink, in its original form, is not scary to this breast cancer survivor.

Yes, I know that I already posted that today is the third anniversary of my breast cancer diagnosis. But I wrote that post yesterday to mark the day, just in case I didn’t feel like writing. But it is now the real day, my family is still sleeping, and I have more to say.

I slept solidly last night and woke up well rested. However, I had nightmare upon nightmare. They basically boiled down to losing everyone and everything in horrible ways. I was uninvited to one of my very best friends weddings FOR NO REASON except that it was suddenly decided that I was a bad person. My daughter, in a moment of anger, made a false report of child abuse against me. She then realized the horror of what she had done when my psychology license was suspended but in nightmare land, the wheels of motion could not be turned back. There was also a weird little dream where I walked into Costco (nightmare!) and the store layout had been totally changed (nightmare times two!) I was then instructed by a woman at the makeup counter to use red lip liner on both my lips and along my eye lid. The last little dream may have had something to do with my daughter’s contraction of pink eye last week. The brain does weird weird things, let me tell you.

Not everyone is impacted by anniversaries of bad events the way that I am. And it’s not like I am sitting with a calendar, marking the days so that I remember. I have one of those brains that is very good at marking the passage of time. This is often a very handy brain feature. I am a good planner, for example. My good friend, Gina, died over 15 years ago, suddenly, a few months after giving birth to her son. It happened in August. Although enough time has passed that I don’t remember the exact date or the exact number of years,  I still often have a mournful feeling in my body near the date of her death. August is also the month of my mastectomy and another very bad day in my life. On August 8, 2013, I found myself at work suddenly crying uncontrollably, after which I realized that it was the first anniversary of my mastectomy.

August 2014 was hard because we were on vacation and I found myself extremely anxious being away from home. My psychologist suggested that we avoid taking vacations during the anniversary times of bad events. I went back and forth about going away this weekend, Memorial Day Weekend, because of its overlap with my diagnosis date. (Yes, people, I not only got my cancer diagnosis right before a three day weekend but before one perfect for making war metaphors.) I actually made a number of reservations in the last few months and then cancelled them. When my husband was gone for 10 days, earlier in this month, I decided that anniversary or not, I needed to get away for my own sanity so I made reservations that could not be cancelled without a huge financial penalty.

On Friday, we made the drive to the rental house. We left at 3:00 pm and I expected given the fact that it was a holiday weekend that it would take at least 2 1/2 hours to get there to allow for an extra hour of traffic. Our first surprise was that my daughter, who finds car trips to be incredibly stressful, was actually pleasant on the drive. Our second surprise is that the trip only took two hours. When we walked into the house, my husband, seeing the gorgeous view out the back of the house, to which is attached with a wraparound deck, exclaimed, “This is the best place you have every gotten for us, hands down.”

Yesterday, we had a wonderful day. My daughter was in a good mood, the best I have seen for months. She SPENT TIME WITH US. She actually sat down at the dining table to eat lunch and invited my husband to join her. She played on the beach despite the availability of Internet! Sometimes, when I have a wonderful day, it can actually be a bit dysregulating, especially if it comes after a particularly stressful time, as this vacation has. Although it’s mostly good, this is the time when I’m most likely to get emotionally sloppy with my friends. “You are the BEST FRIEND IN THE UNIVERSE!!!” It’s not like I’m not sincere but you know, there’s a time and a place for everything and sometimes I act drunk on emotion. Good thing my people love me and are understanding.

Today may be a hard day. Today may be a wonderful today. Today may be both hard and wonderful. I may even get bored. I am hoping that today will be a celebration.

The view from the rental house at low tide.

The view from the rental house at low tide.

The view of the house from the beach.

The view of the house from the beach. The decks are amazing. I want to have a seafood party at this house!

Scene from historic La Conner, WA, taken with the watercolor setting on my camera. I decided that might look nicer on a gray morning.

Scene from historic La Conner, WA, taken with the watercolor setting on my camera. I decided that might look nicer on a gray morning.

As I parked my car at my cancer center last Friday, I thought to myself, ‘This is my last “double-stick Friday”!’ Friday is not a day I see patients so it is the day I typically choose to be a patient. The first stick is a blood draw, which marks the beginning of every medical oncology appointment. Two vials of blood are drawn. Most of the phlebotomists are amazingly adept, which is very important when working with cancer patients, who have veins that are no stranger to the needle. My blood is always drawn on my left arm because I had lymph node removal on my right side. Prior to cancer, I’d had one I.V. placement when giving birth to my daughter 16 years ago and blood draws on a very infrequent basis for some of my annual physicals. Since cancer, my left arm and left hand have been poked and prodded many times a year for blood draws and surgeries. I didn’t even have I.V. chemo and I can tell the difference.

My name was called by an unfamiliar phlebotomist. But they have all been good so I didn’t worry. Then I noticed that it was taking her a very long time to find a vein. I have what they call “difficult” veins. This is why I often get the I.V. line placed in the back of my hand, which by the way, which is kind of ouchie. I could also tell that she was getting nervous. I close my eyes during blood draws because it helps me relax and also because I like to give people privacy to do their job without my staring at their work. I kept feeling the tap tap tapping of her index finger on the inside of my arm and some whispered nervousness. She stuck the needle and then the draw was taking a really long time. Usually, the phlebotomist lets me relax my fist once the needle has been placed. But she didn’t. She kept apologizing and then finally gave up. It wasn’t an adequate blood draw. Then she peered at my arm again, anxiously fretting as she did so. I kept saying, “Don’t worry about it. It’s okay.” She found a vein on the outside of my forearm. This was a new sticking spot.

Again, more time passed than usual. I didn’t mind the extra needle sticking as much as her distress and repeated apologies. Finally, the vials were filled. She fretted over the bruise she knew would be left and in attempt to prevent it, wrapped my arm tightly with medical tape.

I walked upstairs for my oncology appointment with two bandages on my left arm. It would be “triple-stick Friday”. The last stick would be a Lupron shot into my left hip. I have been getting Lupron shots every three months for over two years. Their function is to disrupt the signal from my pituitary gland to my ovaries, which respond by producing progesterone and estrogen. This is a non-surgical way of “shutting down the ovaries” and putting a woman into a near instant and possibly reversible menopause.

And yes, over two years ago, I entered menopause. At the time, Lupron was more commonly used to treat prostate cancer. There was a photo of a smiling middle aged man on the package that held the pre-filled syringe. This struck a few of us in the breast cancer community as funny. The man on the package looked far too happy with his cancer status and the fact that his testes were going to be “shut down” by Lupron.

In three months, the Lupron will wear off and I will wait and see what kind of change ensues. I asked my oncologist what I might expect to happen. It was quickly clear to me as she explained the possible factors (my natural menopause time and the fact that both Lupron and tamoxifen, which I am still taking can cause irreversible menopause) that this was a hard outcome to predict. I said, “Ah, there are many factors involved and they are all DYNAMIC.” Then I covered my eyes and pantomimed throwing a dart. Dr. Rinn replied, “You got it, it’s like throwing a dart at a moving car.”

Like throwing a dart at a moving car.

A great deal of life is like this. My health, parenting a teen.

Mindfulness is like throwing a dart at a moving car with my eyes open.

Wide open.

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George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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