Saturday, April 12, 2014

Be True -

One of the most profound bits of advice I've ever, ever, ever heard/read, from a website I absolutely adore:

http://www.humansofnewyork.com/post/78679045171/i-wish-id-partied-a-little-less-people-always

Go. There. Now. 

Wednesday, April 9, 2014

Nine Months' Post -



During my 4th week of chemo (2nd treatment) I went to dinner with 2 friends. I clearly remember telling them, "I hope I hurry and learn all I need to from this cancer journey, so I don't have to learn it again. I need to be as focused on this process as possible." And both of my friends saying, "I think your cancer and treatment will be something you'll continue to learn from, long after the treatments are finished." A light bulb went on in my head, and I knew they were speaking the truth. While my cancer treatment was the sprint, my cancer healing and learning is the marathon.

After reading Lynn Folkman's blog post this past week (http://livingbeyondbc.wordpress.com/2014/03/31/blog-back-healing-and-embracing-change-after-breast-cancer) and her comment about healing being an ongoing process, I realized I am not the only one who feels this way, what a relief! The only difference is that Lynn is 5 years out, and I'm 9 months. However, I certainly am not the same person as before my diagnosis.

Differences? Well, I do get tired more easily. I've learned to honor that feeling and act on it. In the past I pushed and pushed, knowing that I could push past my limits and succeed. Now I know that if I push I will fall, so I try to not run faster than I can walk. I am learning to go to bed early, to relish the times I can sleep in, and to not feel guilty about needing a nap or saying "no." Yesterday afternoon I had lunch on my front porch, leaned back to soak in the sun and fell asleep. Hurray!

I cannot multi-task anymore. On our trip to Hawaii in March I was rushing to check voice messages, get into the store, listen to my husband, and think about what I needed to purchase, all at once. We hurried through the store, walked into the parking lot, I looked into my purse for the car keys (to the rental car we had to have back to the airport a half hour later), and I couldn't find them. I immediately knew where they were - on the seat of the car - the locked car. We were able to get help and make it to the airport on time, but I can no longer do more than one thing at a time, particularly if I want to be effective at any of the things I'm attempting to do. This is an extreme example, but I see my lack of multi-tasking skills significantly diminished.

I am prone to anxiety. Too many questions, too much pressure to perform, and too much on my plate set me off. I get a headache, feel as if the walls are closing in on me, I feel confused, and I just want to run away from the stimuli around me. I am learning to stop, take a deep breath, and either focus on one item or walk away for a few moments, while I sort through things. This past year I've taken to keeping the radio off in the car and focusing on my surroundings. This has kept my anxiety at bay as well as allowed me to refocus. Practicing mindfulness and making time to meditate have been good tools to keep that anxiety at bay.

I forget. This is the biggest issue for me these days. Often I cannot remember what I did or said 4 hours or 24 hours ago. If I don't make a concerted effort to remember to remember, then I don't. This is basically my short-term memory. Often I forget what I'm going to say and then remember shortly after forgetting. If I don't quickly say what I was thinking, or do something physical (jot it down, use my fingers are a reminder) I'll forget again. I forget my purse walking from my house to the car, not noticing until I need it. I forget words - and cannot find them - not on the tip of my tongue or in the filing cabinet in my mind. I went to a workshop 2 weeks ago, came home, and 24 hours later could not remember anything about the day! Thank heaven I took notes!

Now these are the "bad" side-effects of cancer treatment. My doctor told me to consider my chemo brain and lack of energy to be similar to someone suffering from a traumatic brain injury and to treat this time and the healing process as such. So I do brain games (think Luminosity), I read a variety of material, I am sewing and crafting, I spend time writing, and most of all, I am learning to spend time "being" - to make time to do absolutely nothing. This tends to be the best time for me to heal.

The good news next post! 

This is my "Trust" and "Titanic" series - ha! 

 






Friday, April 4, 2014

Friday Luvin'

This tune has me moving this morning. A perfect way to begin the weekend.

I'm not happy with the way it uploads, so watch it here: "A Little Bit Of Love" by Mimi Knowles - 



Sunday, March 30, 2014

Place of Solace

While Scott and I were in Hawaii we talked about the places, hard core dirt on the ground, places where we find solace, solitude, respite. We love to travel; an adventure is always fun, always rewarding, and honestly, usually exhausting. Although Oahu and Kauai were spectacular, we came home tired. There was so much to see, so much to do, and we tried to get as much into our days as possible. Hence the tiredness that comes and then we need a vacation from our vacation. 

I'm a firm believer in traveling to places we enjoy (unlike places we went once and will never go again) at least twice. Once to get our bearings and the second time to relax and enjoy.

But, back to respite. Zion - yep, Zion, Springdale, Utah is that place for us. When we think of getting away from it all, taking a break, we are fortunate to have only 4 hours separating us from our home away from home. We have our our room away from home, we're familiar with the lay of the land, and we love the people; we don't have to be anyone besides Scott and Ronda. No matter how many times we have visited, we hate to leave for home, and we leave with rides to go on, hikes to take, places to explore, and rests to have for the next time. We leave already planning what we'll do upon returning.

Scott and I will most likely never leave Utah County. I'm coming to grips with this sad dose of reality. We will probably never have a second home in Jonesborough, Tennessee, although we'll continue to travel to the East. But we do have a place that is convenient, hospitable, and speaks our language just a few miles down the road.

So when we came home from Hawaii, we looked at each other and said, "Only 6 more weeks until Zion. We can make it until then."

Where do you go for respite, to have your cup filled?




I just finished a lovely book, The Orchardist, that Jenna suggested I read. I recommend it.

Monday, March 17, 2014

Wouldn't It Be Nice -

Scott and I have spent the last 10 days in Hawaii celebrating our 10 year anniversary. We had a wonderful time, and I won't bore ya'll with travel data and pictures, but I will say it was hard to come home to cold, windy, brown Utah.

But one thing I've been thinking about these past few days is this - you know how people say, "Party's over, back to the real world," or, "Time to go back to reality"? Well, what if vacation time is reality? What if that day to day life is only an "image" of the realness of vacation? (Think Plato's Chairness here.) What if daily life is an image of reality, but only an image, and when we're on vacation, that's when reality/truth is apparent?

I mean, think about it - on vacations we get to be our best selves, do what we love, spend time with whom we love, eat, sleep, drink our loves. And we capture the images of this and bring it 'back' as a reminder of the 'real.'

I'm hanging on to that - my daily life is amazing - I do what I love, with those I love, on a daily basis, so coming back/to was not that hard. However - the memories I bring home of that perfection, will linger, and I will continue to search for more opportunities to have that real time, as often as I can.

Dedicated to niece Kelley Marsden, who lives this so very well -



Tuesday, March 4, 2014

Helpline -

I have been a volunteer for the Living Beyond Breast Cancer Helpline for about 6 months. I usually serve on Mondays from 11am-3pm.

Interestingly, yesterday I had 4 calls from women who have Triple Negative Breast Cancer, and yesterday was TNBC Awareness Day.

Triple Negative Breast Cancer can seem like a life-sentence to many women. The triple negative means our cancer is not responsive to "typical"  breast cancer treatments, although, really, what is typical - all women should have individualized treatment plans. The biggest, most generic difference is that most breast cancers are hormone and protein positive, so often chemo isn't needed, rather surgery, radiation, and sometimes an oral chemo pill which is usually taken daily for 5-10 years. TNBC is not hormone or protein responsive, so we usually have chemo, regardless of the size of our tumor, and that is it - we have one chance at killing our aggressive cancer rather than a prolonged chance. Typically if TNBC doesn't not reoccur in 2-5 years, we're considered NED (no evidence of disease), but those first 5 years are filled with careful monitoring/screening and fear.

What this means is that women with TNBC usually do not have to worry about prolonged treatment, they do have to undergo chemo, of which I've loudly whined about for 18 months! TNBC women must be closely monitored - seeing their oncologists every 3 months, with mammograms every 6 months. Careful monitoring includes things such as blood tests for white and red blood cell counts, feeling for lumps, and changes in energy level, unusual pain, respiratory and heart troubles, bone density loss, etc. Genetic testing is usually advised, and if the TNBC carrier is found BRCA+, there's a likelihood the woman could pass the cancer on genetically, which I've also discussed.

There still isn't a lot known about why a woman would have one type of breast cancer cell and not another, and why a woman can carry both + and - cells at the same time. But suffice it to say, TNBC is still considered the "black sheep" when it comes to understanding cancer cells, and hence, the worry many women have.

Consider this - my friend has larger tumors, perhaps more than one, although they haven't spread, and they are E+R+HER+. Her doctors suggest surgery, which she has, then 33 radiation treatments, and then oral chemo for 5-10 years. Or me - 1 small tumor, surgery, chemo, radiation, then walking on thin ice for 2-5 years. Hmmmm - pick your poison!

In the meantime - and this is what I counseled the women I speak with - live life to the max. DO NOT let your cancer control or define you. You may not be able to control your cancer, but you can control how you deal with it and at what level you entertain it. At times my cancer has played a premier role in my life, yet these days it's an annoying cousin, a part of me that I acknowledge and then hurriedly pass by. I know, and am reminded daily (such as today when I receive a note in the mail saying it's time for another mammogram), it will be a part of my life for quite some time. And yet - another mammogram or another doctor's appointment are the ways I time my NED - 18 months to go toward that 5 year goal!

Happy moving past TNBC Day and on toward NED Day!







Wednesday, February 26, 2014

Dedicated to the One I Love -

10 years! 10 freakin' amazing tough beautiful years of marriage to Scott. I never . . . Well, honestly here, I never wanted to remarry. I wrote our love story last year, so no need to be redundant, except to say we are happy.

Not gonna lie, being married, staying married, takes a lot of hard work, a ton of compromises, and hours of looking at the 3 fingers pointing back at myself when wanting to blame "him" for "my" mistakes. Being married is more than saying, "I love you," and "I'm sorry." Staying married takes more than flowers, back rubs, good-bye kisses, toiled lids closed, glass in the dishwasher, and a hot roll in bed with honey. It's not about "never going to bed angry," rather, as I've learned so well these past few years, "facing issues in the now, because there may never be a tomorrow." Dealing with life in real-time is who/what we are.

Staying married, being married, being happy together, rather than just co-existing, is about negotiating every moment of every day. Learning to put his needs ahead of mine is too simplistic of an explanation. For me - honoring him is honoring me and honoring our marriage. For him it's this - she is the love of my life, and I will do anything, while maintaining my integrity, to keep it that way. 

We waste time fussing and fighting over odd things - FoxNews vs. NPR, partnership vs. marriage, TV vs. computer, Republican vs. Democrat, medicinal marijuana vs. chemical marijuana. We've learned to nip these disagreements in the bud (or butt), usually with a smile, then a laugh, then a hug, and an "I'm sorry, this is ridiculous. We cannot let our precious time together be spent on such nonsense."

Yet for each difference there are 10 similarities that are really quite enchanting - Pepsi over Coke, history over fantasy, poultry over beef, change over stagnation, discovery over redundancy, dark chocolate rather than milk, together rather than separate.

As for me - Scott makes me laugh out loud (I've spit toothpaste over the bathroom mirror more than once), this man keeps me physically warm, his energy soothes my soul (imagine that, my ADHD husband calms me), this man is my strength - my pillar, my rock, my northstar (and I need that constant).

This man is so dedicated to me that some days I wonder if I'm "worthy" of his love. And then I realize my task is to return that dedication, that conviction to us. A wise friend shared this with me, when Scott and I were going through a time of disruption: "You have a male and female side to you. Find the male in you and name him 'Prince.' Find the female side in you and name her 'Princess.' When Scott is hard on you, ask yourself, 'How would the Princess in me handle this situation?' When you are hard on Scott, or when you want to be harsh to him, ask yourself, "Am I honoring the Prince in me by behaving this way?" I try, earnestly, to honor that Princess and Prince, and it has certainly opened my eyes to true love.

So - here we are, married 10 years, and better than ever - we've both lost our cancer weight (35 pounds each), we're heading on a lovely celebratory vacation, and we're making plans for tomorrow - together.

My New Year's Word is "Stronger." This isn't just about me, stronger is for my marriage as well. I'm in. 

Happy Anniversary Honey, XO~ R