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Wednesday, November 19, 2014

Taking Charge of Your Treatment: A Breast Cancer Two-Timer Shares Her Experience

The diagnosis of cancer is a highly charged emotional event. It can throw us off for days before we can begin to think clearly. The inclination may be to follow whatever the person delivering the news tells you. Not always the best idea. As a nurse/medical writer who has breast cancer twice, here is what I recommend and live by:

1. Don’t accept the first treatment recommendation you receive. Get a second and a third opinion, and listen to the reasons for each one’s recommendations. One doctor may recommend less treatment than you think you need. Get as many opinions as you need to feel comfortable about your decision. You don’t have to decide today.

2. Ask other cancer patients, friends, and people in the medical profession for names of doctors for second and third opinions. Don’t use two doctors in the same practice, and make sure they are not affiliated.

3. Set up your appointments as soon as possible, and get copies of all your medical records to them in advance. Create a paper trail. You should have a complete file of any surgical or biopsy reports. They may be needed years later and be difficult to track down.

4. Do your own research-but wait until you have all the facts. It will help you ask the right questions. If you don’t have a feel for the reputable medical websites, make friends with a health professional. One of mine was upset by my diagnosis and said she needed an assignment. I asked her to research the relative risk of recurrence with and without chemotherapy for my type of cancer. When she had the information together, we sat down and made a list of questions for me to take to my appointments. I felt more in control, and she knew she had really helped me.

5. Take someone with you to the appointment or tape record it. When dealing with a highly emotional issue like cancer treatment, even nurses don’t always hear everything. A second set of ears or a tape will allow you to re-hear it in a more neutral environment. None of the doctors I saw: my surgeon, radiation oncologist, or the medical oncologists had any problem with taping our session.

6. Ask them to put chances of recurrence with various treatment options in a way that makes sense to you. For me, percentages worked. If surgery plus radiation and tamoxifen has an 85% cure rate, and chemotherapy would only add an additional 2-3%, is it worth the trauma and side effects of chemotherapy? That was my situation and I could live with a 2-3% risk. Another woman I met in radiation, a stockbroker accustomed to taking risk on a daily basis, was in the same boat. She opted for chemotherapy because she needed to feel she was doing everything possible. That’s the point. What is right for you may not be right for someone else.

7. Don’t give away the treatment decision to your doctor. It is your body. For any treatment to be effective, it must have your full mental and emotional support. Your immune system will not be fooled. Only you can decide your risk comfort level. My first oncologist had declared that I needed six months of chemotherapy in addition to the radiation and tamoxifen. I thought I would die either way. Both the second and third opinion physicians felt that chemotherapy was not even clearly indicated in my case. And because they both agreed, but for slightly different reasons, I felt comfortable going with my gut feeling that chemotherapy was not really right for me. It has been 13 years since that second diagnosis.

Sunday, November 9, 2014

Trash Collection is Site-Sensitive

Picking up trash can be fascinating, seriously! I have the blessing of living in two different places, one way up in the mountains with very little trash, and one in the heart of a major city with beaucoup trash, so plentiful it seems to come up out the ground instead of grass. So I have different approaches to my dedication for keeping my world cleaner.

In Colorado, I have a friend who is always training pack llamas, so when we do our adopt-a-road trash pickup, we take a llama along with saddlebags to hold the trash. Then we climb down and up ditches, picking up what tourists flying by have decided to jettison. They don’t live here; why should they care?

Rattling the saddlebags and stuffing trash gradually gets the llamas used to packing and we don’t have to carry all of it. Win-win. Plus, with a llama, people always slow down to look and sometimes notice we are picking up trash, which gets them to thinking about not leaving any!

My city home has a real dearth of pack animals, so I have my own mantra for that: if I see a discarded plastic bag (and who doesn’t daily in the city?) I was meant to pick it up and fill it with trash before depositing it in a proper receptacle. That basically means, every time I leave my house, I will be picking up trash, but that has a finite limit, as does the bag. Then I can continue on my way, enjoying the walk, the day and any flowers.

Imagine my surprise one day during my mountain time while sauntering down a dirt road gawking at the new snow covering on the mountains, when an empty plastic bag drifted in front of me. Here? Okay, same pledge holds, so I picked it up and started filling. Because of our paucity of trash, I walked a lot farther toting it before it was full. And my surroundings were once more pristine.

Can I invite you readers to do the same? Minus the llama, in most cases, I know, but be aware and help out our planet a little.

Sunday, October 5, 2014

Getting Fired by Your Friends

Well, I have reached the point in my life where I’ve been fired by two long-term friends. We’ve all had to re-evaluate relationships as we realize life is too short to spend in one-sided non-productive “friendships”, so we just stop calling those people who always are up for something if we call them but never reciprocate.

This is different. These were friendships I really wanted to keep. One just stopped interacting because she said we no longer have anything in common. She and her husband have very tight money issues after their investments tanked in 2008. We have done all right and can continue to travel. While I try to focus on family when we’re together, and not travel, she still knows and doesn’t feel we have enough to share. I still continue to send birthday and Christmas cards with warm thoughts for their continued well-being. She’s still MY friend.

The other one is a sad case: a brilliant woman with many talents but deeply scarred from her life. Adopted and neglected, the break-up of two marriages have left her bitter and feeling the world is out to get her. I tried to be a friend to help her focus on her talents and encourage her. She lives alone in a hermit-like existence. We were doing fine until another person treated her unjustly in a group email. All of us who got it thought it was tacky, but because we all just discounted it, none of us rallied to support her. Unfortunately, because she can never let go of slights or assign them to the other person’s issues, anyone who sees that person is slamming her and can never be a friend again. Although I had apologized, it wasn’t enough. I was forever tainted.

This has distressed me, but as another friend who does counseling says, “She made that choice. You offered friendship. She wouldn’t accept it.” Even this compassionate person knows that sometimes it’s not within our power to help another person who doesn’t want it.

The personal benefit out of all this is that I look at my relationships and my demonstrations of caring more critically, and try to increase them with every encounter. Am I being the best friend I can be to those who matter to me? Am I guilty of distraction and lack of support when things come up in my life, or am I able to be in the here and now when people need me? Truthfully, not always, and I will work on that for the rest of my life.

Tuesday, July 8, 2014

Figuring Out My Life’s Work

As I watch my mother, who is almost totally blind and has mobility limitations, sit and do nothing all day, I ache, not just for her, but for everyone who doesn’t have something that gives her life meaning. Looking forward to my ever advancing age, I feel an urgency to have a life’s work that I can do at some level while I still have breath in my body. Deciding on one thing is driving me nuts! Consequently, I spend more time than I should doing crossword puzzles and reading.

While enjoying our deck time high in the Rocky Mountains, my sweetie and I have had this discussion. He says his life mission is to no harm and to always be open to new experiences. That’s fine, I say, but what are you actually doing? I volunteer long-distance while in Colorado and in person in St. Louis with the Red Cross, but somehow that doesn’t seem to be enough. I do volunteer writing and editing for a couple of organizations and look for people to mentor. Again, not enough.

Arianna Huffington said it best in her new book Thrive:

1. Make small gestures of kindness and giving a habit, and pay attention to how this affects your mind, your emotions, and your body.
2. During your day, make a personal connection with people you might normally tend to pass by and take for granted: the checkout clerk, the cleaning crew at your office or your hotel, the barista at the coffee shop. See how this helps you feel more alive and connected to the moment.
3. Use a skill or talent you have—cooking, accounting, decorating—to help someone who could benefit from it. It’ll jumpstart your transition from a go-getter to a go-giver, and reconnect you to the world and to the natural abundance in your own life.

By the way, I would heartily recommend this book. It teaches us how to be mindful in our lives so we experience every moment of every day of this oh, so brief existence.

Tuesday, May 27, 2014

Family Dynamics

A 105-year old vivacious lady once told me that the secret to having a happy aging was not being encumbered by family. Instead she cultivated male and female friends who were much younger than she was and found they kept her challenged and engaged.

Family certainly keeps us challenged in every sense of the word. My husband and I have a full life, sometimes too full with our part-time jobs, travel and friends, and then the family issues. My 90-year old parents, still living independently, are starting to struggle with health issues and the logistics of staying in their home. My sisters and I know that when they must move, it will be crisis management on our part, since my mother declares that the only way she is leaving her house is in an urn. We honor their independence, but find that better health care decisions could be made if they were more savvy and assertive with providers. That won’t happen, so we dance around issues to try to improve their care.

Our son and daughter-in-law have busy lives and keep our darling granddaughters way too scheduled to spend time with us, something that distresses us deeply.

Then there are the health scares and threats to our generation, especially my sisters, without whom I would be lost. Two of us have had cancer twice, and now a third may be battling something worse.

Herein lies the challenge of living well: being concerned but also paying attention to the joys that surround us and making sure we communicate that joy to those we care about. Although trite to say, this message bears repeating: we have but one life to live. Live it grandly and with joy. Don’t miss the daily gifts we are given while caring for those around us. And laugh. Laugh long and lustily. Joyous noise that is contagious.

Saturday, March 29, 2014

My Friend Diana

We are never ready to lose dear friends, but ready or not, we have to deal with it. One summer within the space of a month, I lost two close friends and the father of another dear friend. It must have seemed to my husband that I was forever opening my email and bursting into tears. Then things calmed down for a while, long enough to lull me into a false sense of security that the rest of my friends were safe, and so was I.

But I’m on the shady side of 65 heading on down that slippery slope to 70. And at this point, losing people starts to pick up. So this is a good time to give some thought to how I handle these occurrences, these holes left in my heart. I still have both my parents. At 88 and 90, they feel like they are slipping from my grasp. They will leave a huge hole in my heart as I become an orphan. I can’t even think about losing my darling husband, my adorable sisters or my precious kids.

Still, here I sit with the very raw loss of my best writing friend Diana, taken so quickly by an obscure but fast-moving cancer. She left two barely grown children, a mother, and a devoted husband, all of whom are still reeling at what happened and where they go from here. So, too, all her writing friends. Diana was bigger than life and a constant force for urging us to be better than we ever thought we could: better writers, better citizens, better protectors of nature, just better.

As Diana’s husband and kids have circled the wagons around their loss, Diana’s other friends have united to support her mother and each other as we deal with having to push ourselves to excel without Di here to do it. She leaves a large hole, yes, but more importantly, she leaves a legacy of her example of how to lead, embrace, and chronicle life. We are all the better for it and for the privilege of having held her hand as we discovered life from her perspective. Having had that teacher and treasure, we can share her lessons with those who remain in our lives. Thank you, Diana. We miss you, and we’ll take it from here.

Sunday, March 2, 2014

Keeping the Knowledge Alive

I recently came back from visiting my parents: dad age 90 and Mom, 88. My dad does a lot of writing, but my mom with her macular degeneration and a prior stroke is almost blind. She feels she has nothing to live for because she can’t do anything she used to do. She needed something to feel good about, so I started a memoir for her. The only rule was that we had to focus on stories of her life that were not part of her intense anger at her family.

She started talking about life on the farm growing up. These stories will be of interest to my granddaughters now, and certainly later when my parents are gone. My parents did a book for their daughters about their lives that my mom typed and made bound copies for their four daughters in 1993, but many of the stories Mom came up with over the last week weren’t in there, so my project is to take what she did then and add these great remembrances.

On an earlier visit, I took her letters she had written her best friend years ago, especially when we were living in Mexico. Her friend was moving into assisted living and her daughter, my oldest friend, asked me if I would like these letters. Of course I would! As I read them to Mom, I learned so much about what my mom grappled with living in a foreign country and raising three daughters, running a home and keeping everything going while my father traveled extensively. My memories are from my teenage years, a much different perspective than my mom’s.

With the world changing so fast, the environment and tools we grew up with will be alien to our grandchildren and great-grandchildren, so we could keep the knowledge and appreciation of earlier times going by writing this stuff down, about our parents, and about ourselves, since we aren’t exactly spring chickens.

It’s also a great way to have a meaningful conversation with older loved ones, even siblings. It celebrates and validates their lives. We all want that.

Friday, January 3, 2014

Another High Point for Seasoned Citizens: New Year’s Eve in Times Square

Now why, you ask, would a 70-ish couple want to spend hours out in the cold, celebrating an event that comes predictably every year with 1,000,000+ of their close, very close, but not-so-personal friends? The average age of Times Square revelers is probably 22.

So why do it and maybe scare ourselves silly in the process? Because we could, and it was a stretch and, yes, a little scary. That’s the point. As we get to this age, there is a huge tendency to circle the wagons and play it safe. Not a good idea. If we don’t continue to grow intellectually, emotionally, and in competency, we shrink. There is no standing still.

Still, we all have to pick our challenges to match our interests and physical limitations. Times Square has some physical and psychological requirements that are significant.

1. Structurally: You have to be able to walk several miles and stand in essentially the same spot for up to 8 or 9 hours. I hopped a lot and did some deep knee bends when rigor mortis started setting in.
2. Cold: We’re talking New York City on the last night of the year. It can be snowing, sleeting, or just bitterly cold. Bring more layers than you think you need. Wear mittens: they keep your hands warmer and you can drop hand-warmer packs into them. Ours kept our hands moderately warm for 7 hours. Toe warmers stick to the bottom of your socks to warm your feet. That helped, too.
3. Bathrooms: We have to be frank here. Essentially, there are none. If your bladder can’t hold its own for 8 hours, you may have to rethink—or make provisions to help it. I thought this over carefully and came up with a plan. After my breakfast cup of coffee, I cut off all fluids for the rest of the day. And for the first time in my life, I wore Depends—just in case that wasn’t enough. Luckily, cutting off the fluids worked, but it’s always good to have a back-up. And I found out that anti-leaking undergarments are quite comfortable—for future reference.
4. Escape routes: In Times Square after about 3 PM, the police cut off most of the access roads and pedestrians are funneled through densely populated check-points, where you will be wanded and cleared to enter a cordoned-off viewing area with big metal barricades. The only way out, once packed in like cattle, is by climbing over the barricade, so you have to decide to either stay or that you are physically able to climb up and over. Once out, however, you will not be allowed back in.
5. Back to the packed in like cattle: If you have even a touch of claustrophobia, don’t do it. There are times when you are packed so tightly together with strangers of different sizes that you can’t even raise or lower your arms. You are totally pinned. My sweetie and I held on to each other through those areas with iron grips to keep from getting separated. I wanted him there at midnight. I came for the kiss!

So why would anyone want to do this? I can only answer why we did it. Several reasons:
• It was our 45th wedding anniversary and we wanted it to be bizarre.
• We had seen the ball drop on TV for so many years; we just wanted to see it happen live for once.
• Our kids blew off our offer of an all-expense paid Disney cruise and park vacation, and this was plan B.
• I was curious to see who else would be crazy enough to do this. I met people from France, Germany, Mexico, Dubai, Croatia and about 14 states. Of course, they were all under 30. New York City-ites wouldn’t be caught dead there.
So we did it, first counting down the hours and finally the minutes. We saw the crystal ball drop, saw the 2014 numbers light up amid fireworks, and kissed each other like we had another 45 years in us.

Then we slogged through the crowd for umpteen blocks back to our hotel, toasted each other with champagne and crashed! Next year, we’re thinking of New Year’s Eve in Red Square in Moscow. It didn’t look as crowded.