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 - 

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.

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 -

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!

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, toilet 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 8 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

Sex in the City -

Sex - the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn, affecting our bodies and affecting our libido. The research I've read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a "sexual disorder/problem." And I didn't bring this upon myself - ahhh cancer, the gift that keeps on giving!  

I have an incredibly loving patient husband who has been an amazing caregiver. And he's waiting for me to give him the "come-here" eye. Most of the time he's patient, sometimes he's frustrated. I try to explain to him that my lack of sex drive is complicated. It's not about him - really, it's about me - emotionally and physically. But I'm tired of this entire process being about me!

I'm just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes - I'm alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I'm having to redefine - and this has had an impact on our intimacy.

From other breast cancer survivors I've been told, "One day, it will just all come back, you'll be surprised, but it will." And I think - "Time frame, please." From medical professionals I'm told, "Use it or lose it, you don't want your vagina to atrophy, thin out, muscles to weaken." So do I pretend? Do I proceed as if all is normal, hoping that in doing so, my body and mind will respond? Viagra for women?

Now, we do have intercourse, but most of the time my fatigue is so great that I'd rather just go to sleep. And intercourse is occasionally painful, although there are vaginal moisturizers as well as lubricants available (I'm a fan of coconut oil or something without a petroleum or silicone base), vaginal exercises we can all do (remember Kegals?), and there are various dilators, stimulators, vibrators that can help (but even these take energy).

I've asked my husband to hang-in-there while I'm healing, and yet I want him to be passionate as well, not treating me as if I'm a porcelain doll that may break. Yet he worries - he doesn't want to hurt me!  And so he hesitantly asks, "Do you think we can make love tonight?" And my response is usually, "Maybe," or, "I'd like to, but I don't know if I can commit." "Let's see how much energy I have." "How about in the morning (when I seem to have more energy)?" And he waits, and I control our sexual relationship - and although it takes two, I would like to be more willing, more available.

Lately we've begun talking about this more openly. It appears to me that we must redefine intercourse - what we had is not what we have, and what we have may be what we get as we move forward. So we have to adapt, rather than wait for that "old-time feeling" to come back. We're learning how to have passionate moments outside of our bedroom. We're learning how to cuddle when reading, watching a movie. We're holding hands more, kissing more, finding moments to say, "I love you" with a clear intention of delivering the message rather than hoping for a romp in bed. I'm learning to tell my husband what touches work, what touches don't (my erogenous zones and arousal abilities have changed).

So here's what I am working on:

1. Communicate my fears, desires, to my partner.

2. Work on what I can fix.

3. Exercise, at least 30 minutes a day.

4. Eat foods that help me heal.

5. Be as positive as possible - seeing this as a hurdle rather than a roadblock.

6. Read up on this topic, so I don't feel so alone, as well as to gain information on how other women are dealing with this. (http://www.lbbc.org/Learn-About-Breast-Cancer/Sex-and-Intimacy-After-a-Breast-Cancer-Diagnosis)

7. Make US a priority.

What works for you? Where are you on this road to sexual strength? 

Cancer Kills -

I lost another friend this week to cancer. Damn, I hate this stuff. There's more to curing cancer, eradicating cancer than wearing pink, running in a 5k, and buying pink-covered cupcakes, sending up a pink helium balloon. Please, please, my prayer to the gods and goddesses who surround us all - take this shit away rather than take away the lives of those who are burdened with it.

From the LBBC.org community - 

Sherri West passed away on Wednesday of Stage 4 Metastatic Cancer. Sherri was trained on the LBBC.org Helpline in July 2013. She participated in one of the first in person trainings of national volunteers.

Sherri’s husband shared “that she was pleased to be part of the organization in her own small way”. I shared with her husband that Sherri had a great impact on the Helpline in her short time of serving as a volunteer. As well, serving on the Helpline is by no means small. All of you know this first hand. She helped and supported so many who called the Helpline. Sherri was also excited to be one of our pilot group volunteers for the community outreach program.

My words to the LBBC community - 

Very sad to hear this news. Sherri was my roommate while in Philadelphia. We had a wonderful time together, including exploring the mosaic house in downtown Philadelphia, riding the bus, on top, in the heavy rainstorm, and hunting out a sushi house late one evening in the rain. She talked with me about practicing mindfulness, living in the moment, and seizing the goodness that comes my way. She encouraged me to continue with my teaching and chaplaining. We corresponded once we both got back home; she gave me perfect places to visit while my husband and I visited the northern CA and southern OR coasts in August. She was so sad when her cancer took a turn for the worst. She knew her days were numbered, and she was determined to live those days to the fullest, which included spending time with her husband and family (she's been on medical leave from her job since about August) and serving the LBBC community.

I am saddened; Sherri was a beautiful woman. It will be awhile before I can remove her name from my phone.

I can't add, "may you find peace," because I believe that Sherri had found peace, and was practicing that peace right here, right where she was. I will miss our conversations.