Wednesday, March 14, 2018

Been a Tough One - Resiliency -

I'm fairly resilient. I leave my "personals" at the door when I enter the office, and I put on my office attire when I begin my work as a chaplain. I journey with people as they go from devastating diagnosis to death - the patient, the family, other caregivers. My role as a chaplain is not about me, not at all. And so I give and give and give and try really hard to not take anything said personally - I'm the conduit - information goes in one end of the pipe, it's mulled around, and it goes out the other. And I try to leave my work at work (hospital and university).

Yet -

I do worry. I pray for my patients (and my students). They are in my thoughts all the time. From the moment I wake to the moment I wake, the people I work "for," are on my mind. I think of how I can serve them, a better approach, a resolution, an option, a resource I can share.

And I give, as selflessly as I can - which keeps me from being overly involved - because I can't adopt a motherless patient, a spouseless man, a bitter woman, and that separation keeps me healthy.

Until -

I become close with a patient, typically those I've traveled with for a year or more. Seeing them on a monthly and sometimes biweekly basis forms bonds; knowing the patient's story, seeing them process their life, carrying them when they are sick, sad, tired, aching, worried, is a joy and something I will always treasure and hold dear.

And this past week has been major tough on me, and I am not as resilient as I thought I could be.

Five deaths in five days. All patients, and some are folks I knew prior to them becoming patients. And I ache for the pain they've been in, and I ache for the pain their families are in. And this week I cried, all one day, spent a sleepless night processing my own fears, and being a little more quiet, a little more reflective, and little more pensive than is typical for me.

I'm reminded of a line from a hymn, "Each life that touches ours for good," and I hope that these folks who have died have not died alone, nor have they left this life. Because a portion of them lives on in me, my colleagues - those people who had minimal interaction but are hugely impacted.

Until we meet again - Marilyn, Jana, John, Vicki, Patricia -

Sunday, March 11, 2018

673 Posts -

I have written 673 posts since my diagnosis of cancer. I wrote daily that first year (minus weekends), then twice a week (or so) since. I've poured out my soul on this blog. It has been my therapy and my refuge. My readers have become my confidantes. This is the record of my journey to, through, and beyond cancer.

And yet I'm wondering if on April 18 I will continue to write or end this journey, as I whole-heartedly look beyond these 5 years to a new adventure.

So, to write or not to write - that is my question for the day.

Thursday, March 8, 2018

Photos and Vulnerability -

I really dislike having my picture taken. I really dislike seeing me in photos. I'm just not comfortable in front of a camera - so I make strange faces to compensate for my uncomfortablness, basically ruining any chance the photo would turn out semi-decent.

I have a file that says "Press-shots" where I pull out pictures of me for various publications and presentations. I try to look decent, but really, I look like either goofy or like an old lady with a big nose, lots of wrinkles, a double chin, and granny hair!

However - as I've been sharing photo albums with the grandchildren, I realized that I am missing in many many photos There are very few pictures with me in them. I typically have been the photographer (good excuse), but really -

Several years ago I was at a colleague's home going through his photo albums looking for pictures that would honor his more than 60 years of work in Folklore. And a funny thing kept showing up - many pictures had a face or body torn right out of them! Holes in pictures where there should have been a body. Huge gaps in tracing and recording a pictorial history.

I asked my friend's wife about this. Her reply, which I will never forget was, "I'm ugly. And I don't like my photos, so one day I just sat down and tore me right out of the pictures." I was stunned - basically a sick to my stomach sort of stunned. Holy cow - this woman had removed herself from perhaps some of the best times of her life! And in this case she would rather not exist than be seen or remembered.

When I was diagnosed with cancer I decided I would document my journey - through this blog and through photos. This put me in a very vulnerable spot - ha, vulnerable anyway, right? So I went to a photographer who I trusted, Nick Stone, to document me from diagnosis to healing. I learned to trust the photographer and trust the camera, and Nick gave me permission to do so.

Of course, there were lots of candid pictures, but the documenting of this time in my life was more important than the picture-perfect me.

And now, with the fact that, "I have gone through cancer, I can do anything," attitude, having my picture taken, while still uncomfortable at times, is very important to me. What's the worst that can happen - a wrinkle show, yucky hair, blinking, a roll? at least I have wrinkles, hair, eyes, a healthy body - consider the alternative.

I've been honest and vulnerable throughout my journey, but the other day I was asked to submit a professional photo for a couple of conferences I'm presenting at this month. And my vulnerability kicked in, and I couldn't find a picture that I think explained me! As you can see from my Bio on my home page, I've changed my photo, just recently, to one my daughter took of Scott and me early this fall. It's nice - and I've changed even since this photo was taken. So I sent one of the pictures of me to both of the conference folks, and I really wonder if I'll be recognized from my picture, and judged, or if I will have folks attending my presentation!

Awe, the turmoil of confidence, introvertness, vulnerability, and respect for myself!

Perhaps one of my most vulnerable times - just five years ago, finishing chemo, barely standing up, puffy, bald, sick as I could possibly be, and Nick caught that moment, and I let him!

Monday, March 5, 2018

Wellbutrin and Sex Drive -

When a woman begins cancer treatment that involves any of her female'ness, the treatments suck away all hormones, leaving women in a constant state of menopause, regardless of their age. Some women are able to take hormones (Hormone Replacement Therapy) after their treatments are finished (typically not though, because many cancers are hormone receptive positive). However, typically this is a long arduous and doubtful process. So, women are stuck without hormones, not feeling whole, low self-esteem and confidence, and they are told to go live a full life. Yet - life is seldom normal, and a big issue for women, and their partners, is their very low libido, complicated with physical issues. And there really isn't an answer for renewing sexual health and energy.

Wellbutrin - can it really help women who have a diminished sex drive since breast cancer (or perhaps any reason for a decrease in their libido)?

I've been practicing mind-over-matter for the past 5 years, learning patience, Scott learning how to be patient, and praying that one day my sex drive would improve. I've lost weight, exercised, practiced a positive mental attitude, built a stronger more intimate relationship with my spouse, yet when it came right down to tingling - not a damn thing. Until now.

Wellbutrin - I can certainly answer YES.

You can Google and read more about this, or read these articles: 

If you need convincing, respond to this post, or beg your doctor to let you give this a try, for a minimum of 6 weeks. 

Just sayin' - 

Saturday, March 3, 2018

Triple Negative Breast Cancer Day 3/03 -

Today is Triple Negative Breast Cancer Day. I've been hesitant to write about this day, just because, like anything cancer-related, it's a scary thing to even address this type of cancer. But here goes.

This picture was taken five years ago. Fiver years post-treatment is the magic number for women who have TNBC. 10-20% of women who have breast cancer have the privilege of it being Triple Negative. It is typically genetic, and usually occurs in women of African American descent. Neither of these parameters fit me. In fact, there is no history of cancer in my family. TNBC is not hormone receptive, and there is no targeted treatment for TNBC. TNBC does not have a long-term treatment/chemo plan. The approach is "cut it, kill it without killing the woman, and keep your fingers crossed."

TNBC is the most difficult breast cancer to get rid of, the rate of recurrence is very high, yet if that five year anniversary can take place, these numbers fall, dramatically.

I am grateful, every day, for my journey. It hasn't been easy, it's been a tough adventure through the years. I have worked dang hard to get and stay healthy - mind, body, and spirit.

This photo isn't glamorous, in fact, I was so sick this day I could barely stand up - no hair, not even eyelashes or eyebrows. But I think it shows my stubbornness and my "I ain't down yet" attitude.

My heart is with those women and their families I've met during my journey who lost their lives to cancer, and those women who walk this hauntingly beautiful and haphazard cancer road.

I am grateful for the support I've had, and I shake my head every day in awe of this beautiful life I am living.

In six more weeks I hit my five year post-cancer mark. Dancing toward that day.

Monday, February 26, 2018

14 Years - Another Happy Anniversary -

February 27, 2004
Another year down!

Well, really, another year for the record books with another grand one on the horizon. I'm grateful for Scott. We continue to learn so much about ourselves and about us together. I think this has been a year for growing our intimacy. We're a pretty passionate couple, yet this year I think we've both come to the understanding that it's time to get to know each other - with late night visits, cuddles in bed, a few Netflix binges, and time together - traveling, sitting, eating, working out, listening, talking, laughing, visiting, reading, enjoying each other's company.

Scott's always told me I was his best friend, and he certainly is becoming that for me. We're weird together, have our own language, our own inside jokes, and this type of intimacy is delightful. We're mature lovers, but still young in our love. What a wonderful place to be.

    2013                                                                          2014