The Promise of the Bell

LucyAnn rang the bell this week marking the end of her 6th and final round of what we hope will be the last of her chemotherapy treatment.  

There's a long standing tradition at the the cancer clinic in Tallahassee where, on your last day of your chemo treatments, you get to ring a bell for all those present to hear and to celebrate your accomplishment.  It serves as a testament to the courage and persistence you have shown in completing the therapy. It's an acknowledgement that it's no small thing to go through this process and that it's one of  the hardest things in your life that you will ever be asked to endure. 

The ringing of the bell was met with much applause, hoops and hollers.I think not only for LucyAnn but for the all the cancer patients at that time in the clinic. It serves as an reminder for those still undergoing treatment that one time very soon they too will get the chance to ring the bell. That there is light at the end of the tunnel.

So congratulations LucyAnn! You did it!

Endings and Beginnings

Christmas Day 2016

Waking up to the carols of Christmas, to the sweet melodies of the songbirds outside my window; to the feeling of stillness, holiness.. A little chill in the air (for Florida that is). Feeling the sweet melancholy of endings and the exhilaration of new beginnings. Beginning to let go of the emotions of past events and embracing a new and hopeful future. Today, simply being grateful for the gifts of the past year: the embrace and support of friends, the gift of new insights and deep recognition of all the love I have in my life .Preparing to celebrate. LucyAnn's last chemo treatment is this Tuesday Dec. 27th. Yay! Merry Christmas.

Questions

We will fight, not out of spite

For someone must stand up for what's right

Cause where there's a man who has no voice

There ours shall go singing

                    From Hands by Jewel

I was listening to Pandora a few days ago and this song by Jewel began playing.  It's a song I've always liked and heard hundreds of times. But this time the simple lyrics above stirred me more than usual. Of course it's not surprising what with what's been happening the last few months over the last year really. It's hard  to think about. So many questions. So many changes occurring both personally and in our nation. . What does it mean for me, for us, to fight? How will that manifest itself into my life now? Old ways don't feel attractive now. LucyAnn and I will not be facing water cannons any time soon. How will we effectively stand for those of us who have no voice? How will we protect our children? What is our role now at this time in our lives? Answers, I hope, are coming.

Slow Time

My most favorite time of the day is the time just before sunrise, a time which I have recently been waking up most mornings. A good term for it might be slow time, where the waking world moves more slowly, quietly. A time where,you can hear the whispering of birds, as they wake just before bursting forth into their familiar morning song. For me it's a time where hope feels the strongest. A time where all is well with the world. It's a space where I don't have to think about Trump or war or climate change, or any of the other things threatening our planet. This morning time for me is a gift freely given from nature, giving me permission to just rest for awhile. To unburden myself and be still, knowing that we're all gonna be alright. At least until I walk down the driveway and pick up the morning paper.

The Warmth of a Quilt

A friend who I haven't seen for awhile stopped by yesterday bearing a gift of a beautiful handmade quilt that his wife had made for LucyAnn. It struck both LucyAnn and I as such a thoughtful and kind gesture. Maybe it was the quilt or the fact that we were sitting outside listening to the chirping of the nearby wren, or feeling the warmth of the autumn sun, but in that moment I felt such a wave of gratitude for the simple gifts I receive everyday; the gifts of love, of friendship, of birds, trees and of sky; of life. A moment of transcendence, where,for a fleeting few seconds, I felt the connection to all of life around me.

So my friend and I sat on the porch awhile laughing and sharing stories of nuns, and of crazy teachers with classroom paddles; of painting bridges, and funny summer jobs; of painful childhood bullies and how we coped with them and with the teen and pre-teen years. It was such a sweet time basking in the comfort of long ago memories, all the while feeling the warmth of the quilt resting on my lap.

Reaching for the Sun

I had a strange half-sleep vision yesterday morning in which I saw myself surfing the top of a black wave, on the brink of falling and being swept into the dark water below. I remember feeling scared but also feeling strangely drawn to the darkness. It felt familiar.  It felt like a place of rest.

I looked up and found that above me was a beautiful blue sky, sun shining brightly, warming my face and my whole body. I turned my attention away from the wave and allowed myself to feel the sun's warmth, allowing all the sensations to permeate deep into my being. This was where I wanted to stay.

It's been three days since the presidential election and, like many of you, I'm still stunned about what happened. My mind asks how could it be? How did we let this happen? What happens now? I've been obsessively pondering these questions, allowing myself to stay in the darkness. No more! I'm reaching out for the sun now, to come back to the life of blue skies; to the life of basking in the love all around me; to the gifts of my family, of my special friends, and to the beauty of nature. And mostly I'm taking a break from the news which just seems to permeate our lives and keeps us in the funk. Enough!

The Simplicity of Uncertainty

Recently LucyAnn and I were  talking to some friends about how isolating and difficult it has been dealing with the added uncertainty in our lives now, what with not knowing what the side effects of LucyAnn's chemotherapy will be and the timing of those effects. Little things like scheduling social activities, making time to spend with friends, and just being able to plan things in general become a little more complicated. I like the familiarity of sensing some certainty in life, of not wondering when the next shoe will drop.

I mentioned this to a counselor friend and his response was, don't be silly, of course the next shoe will drop, you can count on it, especially in this stage of life. But there's also a lot of beauty and living to be done between and even during the shoe drops.It was a reminder of the simplicity as well as the challenge of living with this uncertainty. As much as I might rage against it, there simply are no guarantees,.I'm beginning to realize that it's time for me to release this illusion and embrace all of it; the beauty and simplicity, before, during and after the shoe drops.

In Praise of Song

Last night LucyAnn and I were again treated to the healing songs of the Threshold Choir, an a cappella group who sing for and with those in need of healing. As usual, as they began singing I closed my eyes and let their soothing harmonies wash over me, bringing images of calm, of love and laughter, and of a deep sense of peace. I briefly opened my eyes and noticed LucyAnn sitting quietly, eyes closed and completely still, her tired eyes soft and relaxed, no longer tense and strained as they had been for most of the day. I thought what a gift these generous women bring to those they sing for. Through voice they create a deep spiritual space where the listener can just totally relax, quiet themselves, and begin to listen to their own personal inner voice of healing. Beautiful. Remarkable. I am so grateful for you. Thank you.

Strength

There are times that I look at LucyAnn and am so in awe of her strength and persistence. Not necessarily physically, as she is just beginning to gain her strength back from the first chemo round. But about her inner and emotional strength. I see it every day as she's able to push through all the fatigue and other various side effects of the chemotherapy she sometimes encounters. I think that's what courage is:to do the work and exercises necessary to be well again. It so inspires me.

Catching Breath

Breathing again. Our bodies de-stressing,easing, returning to a more normal state. It seems like for the first time we find ourselves relaxing a little from the trauma of the events of the past two weeks Friends sheparded me through learning how to muster resources to help LucyAnn with in-home care, physical and occupational therapy to help her get back on track and to keep me healthy to be able to take care of her during this time. She had her second round of chemotherapy September 27, one that the oncologist stepped back a bit due to her reaction to the first round. One day of chemo and three weeks to recover. LucyAnn is eating and drinking well and that's the job for these next three weeks: eat and drink and do all the exercises to heal her collarbone and gain strength. Back on the horse.

Lights In the Dark

I sit here in the quiet early morning overwhelmed by the outpouring of help and love from our friends that we have received, especially in the last difficult week.. I know I keep saying this, but until you actually experience and feel this kind of deep love, not as an idea, but in the everyday experience of receving it, can you truly know and feel that this is what is the most important thing in life. I don't know what LucyAnn and I have done to receive such kindness.I don't know what we would do without your support.

The last week or so has been very difficult for LucyAnn. She was admitted to the hospital for 3 days as a result of experiencing fever, high heart rate and general weakness. She was not able to eat or drink very much due to nausea which exaserbated the effects of the chemotherapy. All test and labs showed that all her symptoms were the result of the chemotherapy, and after receiving all necessary fluids she recovered well and actually got back her appetite and has been eating and drinking anything without nausea or stomach upset, a very positive development!

LucyAnn is still pretty weak but she is home now and bulking up on high protein and high acalorie foods to get her weight and strength up to get ready for next round of chemo. One unfortunate event was her falling the night after returning home from the hospital which resulted in a broken collarbone, which means 4-6 weeks healing with her arm in a sling. The stars must have been lined up wrong on that night. Here's hopng to no more "surprise" events like that. LucyAnn and I remain strong and hopeful.

Love and Purpose

"What life and love mean to me: The act of giving purpose to our own lives and then walking in empathy towards others with open arms and open hearts, ready to give and serve selflessly without expectation."

Ram Dass

Walking with LucyAnn awhile ago she said she was feeling bad about me having to take on caring for her during this difficult time. I thought for a moment and told her something I have been feeling for some time now. I told her that she has given me a gift, the gift of a new purpose, the clarity of turning the page to a new chapter in my life, a new chapter in both of our lives. It is the gift of each of us finding out what love is really all about. Finding the real meaning of the vow of "in sickness and in health" and how this experience continues to bring us closer to each other. I'm not downplaying what a hard and scary, seemingly impossible time it is for us. But as difficult as it is going through the realities of the chemo treatments, the fatigue, the nausea, the fears, the uncertainties, I am grateful for the deepening of our love and the spiritual gifts it brings. 

Hair_Loss

A few days ago a friend of LucyAnn's came over to cut her hair short, as a kind of first step toward adjusting to actually shaving her head. She will lose her hair very soon due to the chemo treatments and she wanted a little time to get used to the hair loss. On the surface the mood was upbeat and light, her friends laughing and commenting on how different and beautiful she looked (she did). There was talk about wigs and scarves and hats and how cute she would look wearing them (she would).

But as I watched her friend cut through the layers of LucyAnn's hair,I felt the presence of other layers; of loss, spoken and acknowledged in silence. Loss of control, loss of a sense of identity, loss of familiarity. I was reminded that the loss of one's hair, especially if it's not of your choosing, is a big deal. It is a deeply emotional life event not to be taken lightly; one that involves grieving and acknowledging its importance. What a privilege to witness this life event with LucyAnn.

Weathering the Storm

There's a storm brewing tonight, ready to make landfall in the coming hours. I've been wondering just how strong a storm it will be. Are we ready for it? Have we done all the needed preparations? Will our power be interrupted?

But why am I fretting over something that hasn't happened yet? Today was such a beautiful day. Sunshine, cool morning, a crystal summer shower. A day to revel in.

I've be doing the same thing with LucyAnn and her treatment. Fretting. She finished her first round of chemo today and has done remarkably well tolerating them. Only minor side effects. She was enjoying her feeling good, reminding me how poorly she has felt the last many months.She reminded me the importance of celebrating the moment, whatever tomorrow may bring..She reminded me that we will weather the storms and how we will cherish each moment whatever it brings..

Blue Highways

I had lunch yesterday with two guys whose partners are also going through chemotherapy. They called it a "fraternity", one which you would rather not belong to. It was nice to talk and get thoughts on caregiving and what I might expect.  One of them made an analogy of how it was like being on a slow paced country road while the rest of the world was traveling through their lives on the Interstate, Our friends and loved ones will occasionaly take an off ramp to travel with us for awhile, offering their help and companionship. Right now the on ramp for us in the fraternity is still a little ways in the distance. For now we will keep our eyes on the slow country road ahead, navigating any bumps and potholes along the way.

Comfort

Last night LucyAnn was feeling a lot of head and neck pain so she laid back against me on the couch and I gave her a head massage. Brief tears came to me as I felt how comfortable and familiar the 32 years of being together has made us, our bodies and hearts having become an extension of each other. I felt privileged to be able to provide at least a bit of comfort for her. I think one of the hardest things for me going forward will be to watch LucyAnn experience the pain and discomfort of side effects of her treatment and to know that I can only do so much to relieve her pain. But I will do what I can.

Depth of Field

Pinpoint focus. Those are the words that come to mind as I think about these last two days. All that is around me is blurred as my focus has been attending to LucyAnn for her first two days of chemotherapy. Even as I felt this strange surreal feeling as I walked into the chemo ward of the cancer center, within me I also felt this to be a place of healing, a place of love, a place not to be feared  but a place to fully embrace, as the kind and caring nurses and staff welcomed and fully embraced us. The chemicals to be infused, not poisons to be feared and resisted, but instruments of hope and healing to be celebrated and welcomed with open arms. Liquid healing light permeating every cell in LucyAnn's body to kill all the cancer cells and bring  her body back to an optimum state of health.

Grief and Gratitude

I was feeling a little sadness thinking about how so much seems different now and grieving for the loss of "how it was." Silly really when I think about it. Everything is always changing day to day. But this dramatic change feels different...more in your face different. Tears of grief turned into tears of gratitude and hope. Remembering that LucyAnn is on a journey of healing and renewed strength and wholeness. But looking from the beginning of this untraveled road the trek looks daunting, its unknown twists and turns unsettling.. My focus will be to continue step by step, only occasionally glancing further down to keep perspective. And to hold LucyAnn close, supporting her all the way.

Perspective

On our walk this morning in the neighborhood a 20-something women jogged past us:

LucyAnn: "A lot of people our age and older can jog like that...makes me feel old."
Barry: "A lot of people never even make it to our age. I guess we're somewhere in the middle."

A Blog for Only My Dearest Friends

"No one tells you it's all about to change. There's no proximity alert, no indication that you're standing on the precipice. And maybe that's what makes tragedy so tragic. Not just what happens, but how it happens; a sucker punch that came out of nowhere, when you're least expecting it. No time to flinch or brace."
From Dark Matter: A Novel
Blake Crouch

I decide to start this blog to share my thoughts and feelings about going through this time with LucyAnn and her cancer. Your are my very closest friends which I hold most dear and who I trust with my most deepest thoughts and feelings. I have no idea how much or what I will post but it just feels important to share whatever come up with you. Just to know that others who I love will know. I feel at times scared and frightened about my ability to cope with this. Will I have the strength? Can I be there to support LucyAnn as well as taking care of myself. At other times, when I can stay in the moment, feel hopeful. I will share, not to burden you, but to unburden myself. And maybe to lean on you a little emotionally.

So that's my first post. We'll see how it goes. Thank you for being there. I love you all.

Barry