oh, mr brilliant.

I finished my book on loss and grief last Friday, sent it to my publisher, and left the next day for Tybee Island. We go almost every summer, but usually just for three days; we decided to splurge this year and go for almost a week.

Given that I burn on contact with the sun, I go to hear the ocean, sit under an SPF 50+ umbrella, and watch the dots in the surf, three tiny dots that I love beyond all measure, bobbing on the surface of the sea laughing and paddling on their boogie boards.

We watched the Olympics, we cooked dinners, we spent hours on the beach every day, we laughed.

On Tuesday, John felt bad. Off.

On Wednesday night, he writhed in pain, waking me at 4:45am. We went to the beach that morning, and he played in the ocean with Tess and Emma as best he could. At 3:15pm, he went to a doctor who thought it might be an ulcer, but suggested John could get a CAT scan to put his mind at ease, and so he decided to do that, while I taught an online class from the cottage we had rented.

He came back from his scan, we cooked dinner, and walked on the beach at sunset.

At 8:36pm, he called for information on the scan.

And at that moment, as so many people have experienced, life changed.

Renal cell carcinoma.

And so the fork in the road comes when we don’t expect it. And whether we want the new direction or not, here it is.

It turns out that the pain John felt is unrelated to his cancer. But it is what sent him to the doctor, and why he had a scan that revealed a cancer we couldn’t have known about otherwise. I’m going to celebrate that chain of events, and the fact that we were on Tybee and a doctor named Jerry delivered this news in the most humane way possible. We cut short our vacation to get started on this new trip.

John has named his tumor Spot.

I have pulled on my Big Girl Warrior Panties and in a few days have learned more about kidneys and kidney cancer than one human should ever know. And I will keep on for as long as necessary. And then we will finish our vacation on Tybee and I will once again watch those three dots in the ocean and be overwhelmed by how much I love them.

—–

Update: While I believe that writing is my calling, it is not as secure a life choice as working in a job with benefits. And recently, that has meant not paying our $1400/month insurance premium–like so, so many other Americans. It is a broken, broken system. So John is uninsured for this journey. Dear friends are launching a fundraising page, and it will be online in a few days. If you can help in this effort by giving or sharing the information with your networks, please let Amy McCracken know at forjohnfptak@gmail.com. It is a source of shame that we are uninsured, and it is a shame we must overcome for John’s sake. It is a reality we share with so many. And my writing is a choice I would not change for anything, not even health insurance. We will figure this out because there is simply no other option. xoxo

 

64 Comments

  1. Charissa Struble August 5, 2012

    You are one of the most beautiful souls ever.  Your family is in my heart and prayers!

  2. Heather August 5, 2012

    so much love. so much courage. 

  3. Billie August 5, 2012

    Patti
    Youshare your self and your heart so openly so beautifuly- with such vulnerability – the thing you worked with me on in VT & VT2. You, John, Emma and Tess are in my prayers, my thoughts, and my heart.
    Billie

  4. Anna Guest-Jelley August 5, 2012

    Placing both my hands on my heart and taking deep breaths for all of you, sending lots of love.

  5. Brandee Baltzell August 5, 2012

    There are too many of us that must pull on Big Girl Warrior Panties. Too many friends and loved ones that we must try to prop up to fight this dreadful disease. Sending every bit of light & love that I can muster to you and your three dots.

  6. Emilycline August 5, 2012

    I second that. Thank you for sharing your heart and light with me.

  7. LongtimeDCResident August 5, 2012

    I am so sorry to hear this news. I wish you strength for the journey. May you all arrive at the destination healthy and whole.

  8. ClaudiaC August 5, 2012

    This is gorgeously written, lovingly given. I’ve always marveled in your capacity to share the inner workings of your soul. Thank you for sharing the blessing – and the struggle of your current dilemma. May wings of angels carry you all through this new adventure.

  9. Houde Lucie August 5, 2012

    I am very touched by your brilliance which will erase the spot.   Love you Patti.    Lucie from Montréal.

  10. afmorgan53 August 5, 2012

    Praying for all the kinds of healing you’ll need.

  11. Manon August 5, 2012

    That was beautiful Patti. I hope, if this happens to me, that I can behalf as strong and positive as you are. I really admire you so much. I’m sending you strength and love and more love xxx

  12. Sceneofsublime Laurie August 5, 2012

    In prayer for you and yours. Thank you for allowing us to be part of your journey – it is an honor. Hebrews 6:19

  13. Lisa August 5, 2012

    it is in that overwhelming love that we are held. i know it. not alone, ever.

  14. Maureen August 5, 2012

    Your “ptak” is one of my favorites on Twitter. My heart sank, reading your news (I’ve been on the cancer journey too many times with loved ones), and then righted itself, because “Mr Wonderful” could not want for a better person than you to be with him at this time. May you all be blessed with strength and humor and love, and may the circle of prayers and blessings continue to widen and hold you close within.

  15. Susan August 5, 2012

    Damn it, Facebook.  We need a ‘loves’ reply and a way to automate it as a permanent response to anything that Patti Digh shares with us.  

  16. Rick Hamrick August 5, 2012

    This is saddening and heartening in one stroke, Patti. While I am so sad to learn this news, your simple, honest way of standing and facing the beginning of this part of the journey is inspiring.

    Love, love, love, love, love.
    Rick

  17. Denita Purser August 5, 2012

    Patti, I hold you and your family, John in my thoughts and prayers.  I understand well the CT scan as with my Dad, it was to check where his kidney stone was and it revealed much more as you know.  A pain issue so unrelated to what draw attention to something else such as the cancer turns out to actually be the bigger issue to address.  I am still working on my letter to you….I knew how some of processing all this is as I was there just a few months ago with Dad.  Upon hearing about John, while driving to work, I drove and cried because I just wanted to hold your hand at that moment.  I thought of both my Dad and John and how much I hate cancer.  Then we move forward, I move forward to be whatever support, love, help I can be.  Dad has a awesome attitude and time now together is so much sweeter and I am most grateful.  I know Mr Brilliant naming his tumor Spot says ALOT.   I think of you all everyday, I know we can gain much strength from each other, from friends and family.  And I am blessed to know you, of “37 Days” and what really matters in life.  I know you are my angel friend and I love you dearly.  I want to be there for you all in any way I can Patti.  

    denita xoxoxoxoxox

  18. Reading all the comments, you are surrounded by friends and bloggers that can both comfort and help…may that be a comfort in itself, as you begin this unexpected journey…all of you will be in my thoughts, daily.

  19. Sandy Pendleton August 5, 2012

    You and your whole family are being held in a web of love, strength and support that reaches out into the world of compassion and caring that you have built through your candid sharing and love. May you be feed and held as much as you have feed and loved us all. You, John, Tess are all in my heart and prayers. Sending healing angels to hold you all in feather bed arms of all that you need. Blessings and Love!

  20. Beinglila August 5, 2012

    oh, patti

  21. Polly August 5, 2012

    I am praying for you and John…will add him to the Iona Community’s Prayer Circle

  22. Margaret Graham August 5, 2012

    I would like to contribute to your fundraising page. You’ll post the link here, right?  I’ll watch for it.

    The shame belongs with this broken health care system. You hold your head high, Patti.  You got nothing to be ashamed of.

  23. Tom Harrington August 5, 2012

    You know my thoughts and prayers are with you all. Now, just thinking “out loud” here, as it were:  if metastasis has not occurred, isn’t the removal of the kidney that contains the offending “Spot” the cure?  I think we only need one kidney. But I’m no doctor. Indeed I really know nothing about this cancer. Blessings to you all.

  24. Jkvitale August 5, 2012

    Patti: I am so sorry about your husband’s diagnosis! I am hopeful that the cancer has been cauught early. From my husband’s bout w cancer we learrned a lot too. One thing I learned is that research hospitals have the most up to date treatment options. We chose a hospital thatt was afffiliated with the NCCN…nationa commprehensive cancer network. If by chance he can be treated in a research studthere is no charge to the patient. Message me if you need any information

  25. Vrgniaslim August 5, 2012

    Sending brilliant love and light 

  26. terryhartley August 5, 2012

    This is beautiful and your courage shines through.  I anxiously await donating because I would love to help in any way that I can.  I also love that you constantly open space and opportunity for people. Our moment came after my husband was donating blood to the Red Cross on a Saturday and the person taking his blood told him something was wrong and that he needed to see the doctor on Monday.  
    The doctor on Monday referred us to a doctor that same day and when we stepped into the elevator and looked at her name, we froze to see that it said: 8th Floor Oncology.  It has been an upward journey ever since and I mean that in the best way possible.  No bone marrow transplant for the time being as Jim continues to eat well and exercise.  Platelets have gone from 11 to 98 and no leukemia.  Upward!! 
    Mr.(and Mrs) Brilliant–you will do well, I just know it because I have seen it over and over. xoxoxo

  27. club member August 5, 2012

     we are in the “kidney club” , your post fills me with dreaded reality, I fearfully and gratefully write that damn check every month, but the day will come when I can no longer afford to, that is a just a fact with the current system.  And, kidneys are expensive, so is cancer.  What the hell will we do I continually ask, because even with insurance, being sick is unaffordable.  God, life sucks, is there even a god, I ask myself this each time I read a story like yours: what kind of God….does one even exist?
    I can offer my good intentions and prayers for this new journey you have been thrown into and pray for change that will help your family, mine and the countless others who suffer without a voice, because despite living in the greatest country in the world, there is a cultural-social-economic cancer destroying it from the inside out: the lack of affordable and effective medical insurance.  My wish for you: may you be surrounded by the love and support of friends and family , wisdom, compassion, and freedom from financial worry on this journey. I believe in miracles, may you have yours.

  28. Tina Tierson August 5, 2012

    Patti, as soon as it’s posted, I will definitely contribute!  I can’t do much at once, but I will do as much as I can, as many times as possible!  You have brought so much insight and joy into my life no amount of money could repay it. You are a light in the world, as is the rest of your dear family.  I’m incredibly grateful to include you in my life.  xoxo

  29. Ally August 5, 2012

    Oh, Patti. The shame is of course in the backwards medical system you have to deal with. I’m glad you reached out – it gives me a way to help from the other side of the globe. <3

  30. Katweyer August 5, 2012

    The shame is not yours. It belongs with the Powers That Be that have gotten this system so corrupt, so confused, and os unnavigable (dare I say fucked up?). I’ve attempted to lead a revolution for some time about our health insurance – in fact, it’s what drew me to our current president. so, Patti, be unashamed and carry on. We are with you.

  31. ronnadetrick August 5, 2012

    Patti: prayers, hope, love, and then some…from me to you – and yours. 

  32. ronnadetrick August 5, 2012

    So much faith, hope, and love (and then some) on behalf of you – and yours, Patti. xoxo

  33. Millejoa August 5, 2012

    Please disregard the word, shame  -  in better circumstances you would not even allow that word into your vocabulary.  I know that any donation will be received with gratitude  ~  and know that many of us that follow your many acts of kindness, your acceptance, the sharing of your vulnerabilities, your examples of understanding, your passion, your shining compassion feel honoured and grateful to give what we can.
    Please help us to show our love, respect and gratitude.  We love you and isn’t this sweet for us that you and your family allow us this opportunity.

    this is our true nature to share in the healing of a member of our tribe, to gather as a community to give comfort where we can.

    We are grateful for this opportunity.  Many prayers, many blessings.  I have my mind set on blasting out the ‘beans’ that do not belong there.

    I also offer my most powerful prayers and intent for Tess.  Although, with all the love and support this lovely girl has  –  I can only imagine magic, happiness and success for this amazing being.  I worked 22 years in the school system, with children who, tho were labelled special were the ones closest to the angels. brought to teach us valuable lessons.  Tess will be one of your major supports during this time  –  in ways you might not expect.

  34. Cynthia Louden August 5, 2012

    I just spent the weekend reading Life is a Verb and wanted to stop by your blog to say thank you. I felt I got to know you and your family a bit from your book and am so very sad to read about Mr. Brilliant. I am a freelance photographer and blogger and know how hard it is to make that insurance payment. I have many friends and family who have dropped their insurance as well and are living with their fingers crossed. I will be happy to do whatever I can to promote the fundraising site on my blog and social media. 

    Clearly from all the comments, you and John have done so much to add to people’s lives. Your book has made a difference in mine this weekend. Thank you…now open up those loving arms and let all that wonderful caring and generosity flow back towards you and your family.

  35. Estherlouie August 5, 2012

    You get those Big Girl Warrior Panties on Patti, and we writers and more will walk alongside you!  I’ve got my Wonder Girl Magic bracelets and rope on ready for this fight for Mr. Brilliant to get Spot out!  I am a 12 year cancer survivor and know that there are no guarantees.  I happened to have had med insurance at that time, and fighting cancer is tough enough without the battle for money.  We’ll smash those barriers too.  At the ready and will send what I can when Amy gets the website up.  Your strong offers have made us all better Patti.  I live by the code of the west – no one rides alone.

  36. Jo Parker August 5, 2012

    I know you through your books and i feel you through love….Special souls with hearts of gold…

  37. Tanya Levy August 5, 2012

    Sending love and healing to you and your family.  You light up our lives with your words, may our support soften the journey until you return to your vacation spot to watch three dots in the ocean.  Blessings.

  38. [...]  Renal cell carcinoma, to be exact.  You can read her eloquent telling of that story here: http://www.37days.com/2012/08/oh-mr-brilliant.html  And now her path has taken a very unexpected turn.  Because she has chosen to be a writer and [...]

  39. Megsy August 5, 2012

    Everything will be okay Patti, it’s time to rely on your faith…..this is bigger than you!

  40. Cate Nunez Scales August 5, 2012

    Oh Patti… there is no shame.  We’re steps away from the same reality all the time.  It’s what you risk when you decide to live a different path, a creative life.  So no shame, just keep creating, keep inspiring.

  41. Jennifer Pastiloff August 5, 2012

    I will share this. You have changed my life. You are a gift. God Bless you and your family.

  42. Huffmanfam August 6, 2012

    Love you, Patti. Praying hard, and awaiting the site to assist … and will share that site again & again. God bless you, John, Emma, and Tess. – davi

  43. [...] Oh, Mr. Brilliant by Patti Digh. I think I mentioned last week that I was super sad that Patti had just found out her [...]

  44. Katy August 6, 2012

    It is a source of shame that we are uninsured….this should be erased from your heart and soul.
    Being the change you would like to see in the world, is not for the faint of heart.
    Stoke up that fire of faith and remember the airplane mask has to go on you first in order to help everyone else.:-)

     

  45. Keno55437 August 6, 2012

    I don’t know…but I just think it is more than randomness that I spotted your book “Life Is A Verb” while waiting to check out at JoAnn’s Fabric & Craft yesterday afternoon. It was purposeful. The line was long, and I was frustrated. In a wave, I was shoved along…and didn’t have time to decide on he book. Looked you up today to learn more…and read your post.

    I’ve seen the tale of many a cancer in my own family…brother, father, mother and myself.
    Sending you love and light. Look forward to exploring the book and sharing in your story.

  46. [...] is from writer Patti Digh: While I believe that writing is my calling, it is not as secure a life choice as working in a job [...]

  47. Valancy Reynolds August 7, 2012

    Oh Patti, my heart aches for you. Your work has been a gift and the courage, creativity, compassion, honesty and openness you embody are such an inspiration to me, and to so, so, so many others. Although we may not be able to eradicate cancer with our gratitude and empathy, hopefully we can help you let go of that unnecessary shame. And to help erase spot, I will be looking for the link to the donation page to give what I can. 

  48. Sharon Porcaro August 7, 2012

    My heart is with you.

  49. [...] so many beautiful messages of support as we start this journey. I cannot begin to express what this community means to [...]

  50. Pcooper August 12, 2012

    You are in inspiration! Your words have always touched me so deeply!

  51. [...] own struggle with postpartum PTSD. Like the blogosphere’s swift and sweet support of writer Patti Dighand her husband, just diagnosed with kidney cancer and uninsured. {art at my nana's [...]

  52. Kate Bacon August 14, 2012

    Please, please don’t feel ashamed that you are uninsured. You are simply unlucky enough to live in a country with no public health service :-( Wishing you tons of love on your journey xx

  53. Heather LaRee Carter August 14, 2012

    Patti, John, Emma, and Tess ~~ You all are in the most special place in my heart. Thank you for letting us know and be a part of your journey. True, let us all shuffle together with so much love and light and kindness. I love you ~ Heather

  54. Sondra Thiederman August 14, 2012

    Patti: You are amazing and your message an inspiration to us all. At the same time, I imagine you’d love a good cry and maybe a few vigorous minutes tossing some sturdy objects against the wall. You’re entitled to that and, afterall, if God created all this, he/she also created the sheer perverse pleasure of a good solid tantrum.
    Thinking of you,
    Sondra Thiederman

  55. Leslie Armstrong August 14, 2012

    Patti, our hearts go out to you, John, Emma, and Tess. Please know that you are all in our thoughts and we are sending much love and wellness.

  56. Lucie D'Alessandro August 14, 2012

    Patti, looking at that sweet photo of your hubby makes me want to wrap him in a big cuddle. I’m so incredibly sorry. I know something of the maelstrom that you’re in, being diagnosed with cancer myself. It’s been an awakening, beautiful although not always easy, but I can say with certainty that our bodies are infinitely wise and capable if we give them what they need. Yes, you know how to live deeply and fully, to love well, all vital at a time like this. With thanks for sharing your life, and sending much love and wellness to you both.

  57. KayB August 14, 2012

    Been there. Done that. Still here. You tell Mr. Brilliant to go all Lady Macbeth on this thing. “Out, damned spot, Out, I say!”

  58. Julia McDonough August 15, 2012

    Neither you nor Mr. Brilliant should feel shame about life choices that left you without affordable health insurance. Society needs folks who write and think and challenge the status quo as much as it needs those of us who made more conventional choices. The only shame is one that we bear collectively–that we as a society have allowed the health system to be so broken for so long and have allowed so many people to suffer.
    The old saying is not universally true. Giving is not always easier than receiving. You’ve helped so many people, Patti, by sharing your wit, insights, joys and sorrows with us. Give us the gift of being able to help you.

  59. Claire Gillenson August 15, 2012

    sending love, light and prayers + contribution to your 137 fund.

  60. Laurie Preston Flood August 16, 2012

    Bad news, great attitudes! You will all be in my prayers. My husband needs new knees (they are so bad they’re fusing together) and is constant pain. He’s only 52. Each knee is approximately $30,000 and we had to let our insurance go about a year ago. I agree with the previous posts, and God bless you all!

  61. stephanie August 20, 2012

    Dear Patti,
    I have followed your blog for several years…I would like to donate something for John’s health care (it is beyond a crime that this wealthy country cannot provide health coverage for all it’s citizens) I do not though seem to be able to find where I can do this.
    x…x
    stephanie

  62. Lois September 2, 2012

    I just got your link through Jane Lafazio’s blog.A word of comfort: this I know’,the fact that your husband sought help for a pain unrelated to his dis-ease and which led to his diagnosis means that he has been given an amazing chance to heal but he must be prepared to do the work not only on a physical level but on a mental, emotional and spiritual level as well. Seek guidance. Namaste

  63. Kerrie September 3, 2012

    Please, please, please rewrite the shame right out of your hearts & minds. You are one of millions who are also uninsured. The responsibility lies with the insurance & pharmaceuticals & legislators/lobbyists who put personal profit ahead of fair access for the group. Sending blessings for healing & strength to you & your family.

  64. DEBORAH DAMELIO September 4, 2012

    My husband recently lost his insurance as well although we are not facing such huge bills. I have had extensive medical issues and so, from experience, please get over any shame you might have and PLEASE talk to ALL your medical providers to see if they can reduce the bills at all. Many will.

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