Tuesday, September 29, 2015

#SOL15: My True North is Now



I.

Outside, the trees we planted three years ago are dying. I've faithfully watered them and used soaker hoses throughout the summer.  But September has been consistently hot and I have lost my way and find myself here.

Now.

Curling brown-edged leaves fill two trees and the fir trees have brown needles. The hydrangea are drooping and even the wild mint is less green.The gardens and trees I usually dote on are no longer a priority.  They aren't even a passing notice most days.

Not now.

II.

My husband has advanced-stage lung cancer that has spread to his spine.  Six weeks ago, none of this was known. He will take an MRI this week to see if the cancer has spread to his brain.

There, I've written it.

              And the urge to erase it is so strong.

But even if I erase it, it will still remain true.
Now is not the time for deception.


III.

As if the cancer was not bad enough, we learned yesterday that a staph infection, most likely contracted during the surgery to put in a port to facilitate chemotherapy treatments is running through Rob's blood. Early Friday morning found two police officers, three volunteer ambulance corp members, and two EMTs in our living room.  This was the day Rob was to take his first chemo treatment. Instead, I heard Rob calling through very labored breathing, Call 911.  And I did. All this before a single cup of tea could be brewed.

At the hospital we were told he likely had pneumonia, although the ER doctor had said, "I wouldn't make much of that bit of fluid in his right lung." Although he had no temperature at home, by 10 a.m. it had spiked to nearly 103 degrees. Covered from toes to chin with multiple blankets, he shivered so that the narrow bed beneath him rocked, defying the locked wheels.

And so he was once again admitted to the hospital.

The next morning we were told by the pulmonary specialist that Rob did not have pneumonia. This was followed by another doctor specializing in infectious diseases of the blood who told us there might be bacteria in Rob's blood and we would have to wait until the cultures taken on Friday could be read.

48 hours.

On Sunday afternoon, we were told there was nothing showing up in Rob's blood, and we all began to feel a bit hopeful that the chemo could be rescheduled. The oncologist made adjustments and had everything reset for today, but by Monday--late morning, Rob was told there was bacteria in his blood and that he has a staph infection.

The cancer treatment, so very necessary, will likely be delayed another month as he sits in a hospital with multiple IV lines feeding chemicals into his body to fight an infection.

Meanwhile, the CT scan he had on Friday shows that the lung tumor has grown larger in the space of 4 weeks.

IV

5 weeks ago we were planning a trip to Maine--a trip to close out the summer. Rob, Dev and I on one of our famous road trips we so love. Then the phone call came--before 8 a.m. and so much has changed.

Know that this is the stuff of nightmares and so perhaps it is not so odd that most nights I wake on the hour pulling myself from the same terrible dream of being tracked by a serial killer at night who flashes knives and slashes at my arms and abdomen; thighs and neck--never too deeply.

And I feel the sting and burn--the slow trickle of blood.

And even when I tell myself--You are dreaming--I wake only to fall back into the same scene over and over again.

This is the type of dream that follows me through the early morning as I make my way into a new day.


V.

Earlier today Rob looked at me as I sat next to his hospital bed and said, "We had to overcome a lot to be together.  Do you remember?"  

We talked about those memories for a bit, pulling forth a few stories from decades ago and then he said, "This is just debris in the road we need to clear. We will do this."

VI.

And we will.


VII.

On Wednesday I'll be shaving Rob's head.  The nurses look a bit askance as they hear us talking.

The day before we got the call, Rob had 8 inches of hair cut off and mailed it as he always does to Locks of Love. Now there is a stubby pony tale of chestnut hair that he says is difficult to lie on.  So it will be coming off.

A close buzz, like my Da wore in the 60s. I've never cut his hair.

Our son calls his Da, the Hippie. He says this with such affection. And I want you to know this: that in all of this terror, there is affection and love and trust and a trueness I have never named before. There is goodness here.

VIII.

On the way home from the hospital last night, I tell Dev, "We are claiming that hospital room as a place of love." 

Each day it looks less and less sterile. More and more lived in.

Living is a a minute-to-minute affair.  
There is no tomorrow.
There is now--that is my true North.


IX.

And the one simple truth I hold close is that in this often wild ride with Rob, I have never loved my husband more.



54 comments:

  1. What a journey you and Rob have been on. I'm sorry you've been dealing with such heartache and so many medical issues for your husband.

    Thank you for entrusting our writing community with your story. I hope you can feel everyone's love and support as your husband journeys towards wellness with you by his side.

    ReplyDelete
  2. Tears flowed from my eyes as I read your post. My prayers are for you and your family. You are strong, you are keeping it positive and that is no easy task. I wish you and your family all the best.

    ReplyDelete
  3. There is so much emotion here! I love that you are able to articulate it all. It really is a roller coaster! The trees will wait.

    ReplyDelete
    Replies
    1. Looks like a week of rain. Mother Nature will provide for the trees. Thanks.

      Delete
  4. I'm right with you Mary Ann, my husband died a month ago and you learn quickly how little doctors really know and he knew more than most.
    Sending you all my best vibes.
    Bonnie

    ReplyDelete
    Replies
    1. I am so very sorry for your loss. I got your vibes. Thank you.

      Delete
  5. You and your family are in my thoughts and prayers…

    ReplyDelete
  6. I'm so sorry for these terrible times, Mary Ann. Finding ways to make a place of love right there with your husband and son will be a blessing for you all. Hugs to you for keeping on, getting up, and being there. I've been through some crises with my husband, who passed away two years ago, and we did it, each day by day.

    ReplyDelete
    Replies
    1. Thank you Linda. It is day by day, moment by moment. So sorry to hear of your loss.

      Delete
  7. How brave of you to write this and share Mary Ann, and how sorry I am that you and your family have to face this challenge. Love is surrounding you whatever happens, and although we've never met I'd like to add some small contribution to that love.

    ReplyDelete
  8. It took great courage to write this, and more courage than that to face each new day with Rob's illness and what might be in store. I send wishes of healing and peace your way.

    ReplyDelete
    Replies
    1. I started it a while ago and put it aside, knowing I would work my way back to it. I feel better for writing it and sharing it. Thank you, Tara.

      Delete
  9. It took great courage to write this, and more courage than that to face each new day with Rob's illness and what might be in store. I send wishes of healing and peace your way.

    ReplyDelete
  10. This is very touching, thank you for writing it.

    ReplyDelete
  11. Oh, Mary Ann. My heart has been torn, mended, flattened, and filled with your words and the love that they carry. Know that you, Rob, and Dev are continuously in my thoughts and prayers. I wish I was closer to hug you tightly.

    ReplyDelete
  12. There aren't any words that would change the situation or take away your pain. Just know that far away in Estonia I am sending good thoughts your way.

    ReplyDelete
    Replies
    1. I feel the good vibes all the way from Estonia. Years ago, Rob and I visited your country. Very beautiful place and people. Thank you Terje.

      Delete
  13. What an incredible amount of courage it took to write this and not erase it and then put it out there into this community. You have a true north, and nothing else matters now. Your honesty and pain took my breath away. Prayers and thought to you.

    ReplyDelete
    Replies
    1. Melanie, thanks for your kind words and prayers. I do have a true north.

      Delete
  14. What an incredible amount of courage it took to write this and not erase it and then put it out there into this community. You have a true north, and nothing else matters now. Your honesty and pain took my breath away. Prayers and thought to you.

    ReplyDelete
  15. Your love, your bravery, your struggle, your hope, your everything. All this just flies off the screen when I read this piece. I second the thank you for sharing this story as it is just beginning, changing your "normal." Your husband sounds like a wise person. Sending you prayers and hope.

    ReplyDelete
    Replies
    1. It's hard to hold on to how much our 'normal' has changed. Several times throughout any day, I want to return to a time prior to the diagnosis. I suspect that will change too. You are right, Rob is wise. Thanks Kim.

      Delete
  16. What a beautiful piece. I really felt your need to erase the cancer statement and your understanding it couldn't really be erased. You and your family are in my prayers.

    ReplyDelete
    Replies
    1. I actually di erase and rewrite that line and then left it sitting for two weeks. Thanks Linsey for your words.

      Delete
  17. Wow! I am taking a deep breath. I don't know what led me here. Your writing is so fresh and raw and real. My hope is through this writing you will wade through this incredibly murky water a little more smoothly. There is love. Prayers for Rob's health and healing.

    ReplyDelete
  18. Wow! I am taking a deep breath. I don't know what led me here. Your writing is so fresh and raw and real. My hope is through this writing you will wade through this incredibly murky water a little more smoothly. There is love. Prayers for Rob's health and healing.

    ReplyDelete
    Replies
    1. Glad whatever led you to this post did so, Margaret. Thank you for your prayers.

      Delete
  19. Difficult. Thank you for telling the story of the abrupt change. There is pain in the telling, but also a hint of a release of pressure in allowing others to share the burden.

    ReplyDelete
    Replies
    1. You are so right, I am less burdened through the sharing.

      Delete
  20. Mary Ann, life is fragile and uncertain. I hear your pain as you walk along the edge of the unknown. I can offer thoughts, prayers, and understanding. 12 years ago I was diagnosed with Non-Hodgkins Lymphoma all over my body. It was a rough journey but the power of faith and medicine brought me here. If you need an ear, I have a listening one. Stay strong.

    ReplyDelete
    Replies
    1. Carol, thank you. Survivor stories offer such hope.

      Delete
  21. Mary Ann, I am in shock -- I have somehow missed all that's happened for you in these last 5 (5?!) weeks. I am so moved by your description of the shock, the pain, and yet the deep love in the midst of it all. I send love, so much love, to you and Rob and Dev. Know that I am holding you in my thoughts & my heart... here on the other edge of the Atlantic.




    ReplyDelete
    Replies
    1. It was shocking here too. Hard to process anything. Taking it one day at a time. Thank you for your support. Means a lot.

      Delete
  22. Feeling the punch of your news here too, Mary Ann - but thank you for sharing it. A line you used in one of my favourite 'By-Road' posts keeps ringing in my ears:

    'yes, I said yes I will Yes' - I hope it brings comfort again to you now.

    Sending you and your man and boy much love and goodness from the west of Ireland and this Twitter by-road. We have you in our thoughts and prayers.

    Take care
    Mary x

    http://maryannreilly.blogspot.ie/2015/03/something-about-love-sol15-day-17.html

    ReplyDelete
  23. Feeling the punch of your news here too, Mary Ann - but thank you for sharing it. A line you used in one of my favourite 'By-Road' posts keeps ringing in my ears:

    'yes, I said yes I will Yes' - I hope it brings comfort again to you now.

    Sending you and your man and boy much love and goodness from the west of Ireland and this Twitter by-road. We have you in our thoughts and prayers.

    Take care
    Mary x

    http://maryannreilly.blogspot.ie/2015/03/something-about-love-sol15-day-17.html

    ReplyDelete
  24. Mary Ann,

    Your writing reminds us all to live and love each moment even as you fling your heart into these hard moments you've been dealt. Friend, this is a digging moment and you have all of us here digging with you. Take care of thyself even as you take care of him and know that you are surrounded with love.

    ReplyDelete
    Replies
    1. It's comforting to know so many are digging with me. Sometimes it feels rather singular. I'll keep your words in mind. Thank you, Pam.

      Delete
  25. Mary Ann my thoughts and prayers are with you and the family. I have been thinking about you in the past weeks and have been meaning to write. Now I am writing you not to see if you want to get together but instead to let you know I am sending all the positive vibes I can muster. And if your life does get stable enough and you'd like to get together let me know.
    Deb

    ReplyDelete
    Replies
    1. Thanks Debbie. We need all the good vibes available.

      Delete
  26. There are no words. I admire your bravery in sharing your story and I pray God grants you wisdom, peace, and time.

    ReplyDelete
    Replies
    1. Thank you Peg. I spent some time this afternoon in a chapel. Wisdom, peace and time are so essential, so necessary now.

      Delete
  27. If I could summon every Quaker before me to hold you all in the light I would. I will hold you in the light-- dear friend.

    ReplyDelete
    Replies
    1. Your words are the light. Thank you, friend.

      Delete
  28. Silence. Pause. Speechless. All I can send is love. In the form of a stranger in a comment box from a world away. Just the hint of it. Love.nowhere close to enough.

    ReplyDelete
    Replies
    1. Jabiz, feel the love a world away. Thank you.

      Delete
  29. Mary Ann,

    Your words are truly moving and relatable on so many levels. The journey of life is quite an interesting one. I have lived a similar journey with my grandfather and can empathize with you. Now while experiencing a quite different journey with many highs and lows in a different respect ... Your closing words have had an impact on me.

    Living is a a minute-to-minute affair.
    There is no tomorrow.
    There is now--that is my true North

    You are such an amazing,strong person. I truly admire you!

    ReplyDelete
    Replies
    1. Thank you, Jackie. Hard to remain in the now. I slip so much, and then I recognize the slipping. Grateful for that.

      Delete