A Woman’s Guide to Living With Heart Disease: my blog-turned-book project!

29 Oct

by Carolyn Thomas     @HeartSisters

The Pitch. . .

“Have you considered writing a book based on your excellent Heart Sisters blog? I would love to explore the possibility with you.”

The date was September 9, 2015, and that’s how the message began that was about to change the next two years of my life. It came from Jacqueline Wehmueller, then Executive Editor at the prestigious Johns Hopkins University Press (JHUP), the oldest academic publisher in North America.

These thrilling words led to many e-mail and phone conversations with Jackie, followed by submitting a project backgrounder, a draft 10-chapter table of contents, and a sample chapter to JHUP before we could sign the book contract.

I also completed the JHUP multi-page standard proposal document (essentially questions like “Why this book? Why now? And why are YOU the person to write this book?” – to which I’d previously answered with my inside voice: “Ahem. You called ME, remember?”)  I wrote and rewrote this document, with additional creative input from artist/wordsmith Judith Westerfield!  (Thank you, Judy-Judith!) 

As you might expect from a prestigious academic publisher like Johns Hopkins University Press, there are a number of careful steps potential authors must go through before a publishing contract gets signed.  The first steps for my book project were to have the entire package successfully reviewed by:

  • an anonymous Johns Hopkins University cardiologist (it passed!)
  • the Editorial Advisory Committee (passed!)
  • the Faculty Board (passed again!)

SigningTheContractWhich brings us to the official signing of the publishing contracts here at my living room coffee table one evening after a family dinner. My deadline to submit a 70,000-word draft manuscript was November 1, 2016, with the final book delivery tentatively planned for about a year later. I signed both copies of the contract and assorted paperwork to return to JHUP, but only after first consulting with my accountant friend Terry Parkes who was able to translate the vagaries of the U.S.-Canada Tax Treaty for me. (Thank you, Terry!)

 The late author Susan Sontag once advised other writers:

“There is a great deal that either has to be given up or be taken away from you if you are going to succeed in writing a body of work.”

That sums up nicely another important factor that I’d also been struggling with ever since that first approach from JHUP.

As a heart patient living with the ongoing and debilitating symptoms of coronary microvascular disease, I’ve learned how to carefully pace each day, each event, each outing so as to minimize symptoms, buffered by naps or rest or nitro spray both before and after every one. Mostly, this pacing works pretty well. But throw in a busier day, a bigger event, a longer-than-expected outing, or getting stuck in traffic, and I’m often reduced to an exhausted wreck.

How on earth did I think I’d be able to write an entire book on top of everything else?  How could I add anything this BIG while still safeguarding my health?

I had raised these concerns during my initial discussions with Jackie Wehmueller at JHUP.  She reminded me that, with over 700 published articles on my WordPress-hosted Heart Sisters blog so far, I’ve essentially already written the book. All I needed to do now was to organize each chapter’s theme to include some excerpts from this post, more from that post, still more from others, and then write simple transitions between each excerpt. Easy peasey.  (Thank you, Jackie!)

Writing the book. . .

In anticipation of this writing project, I bought myself a new laptop to replace my ancient MacBook Pro (which I loved dearly, despite its one fatal flaw: the “o” no longer worked on the keyboard). You would not believe how many words have the letter “o” in them. . .

The new laptop is another MacBook Pro, but this one had weirdly perverse issues from Day One that weekly put me on a first-name basis with the Apple Support folks on the phone. How could I possibly write an entire book while struggling with a screen that liked to freeze up for no reason, or page numbers and citation endnotes that refused to be inserted properly? I learned a lot of do-it-yourself tech tips from the Apple folks, and practiced a few new swear words.

Then I started populating my draft Table of Contents with actual words and paragraphs, better known as “writing the book”. Like many of my blog articles, each chapter started with a theme introduced with a specific personal narrative which then expanded to a broader discussion of closely related themes, including what research suggests about each chapter’s unique focus. As you already know if you’re a regular Heart Sisters reader, I like evidence! This was especially important when discussing potentially controversial subjects – like the known rates of misdiagnosis of women’s heart disease. As I reminded my editor: “Jackie, I’m not making this stuff up!” – while pointing out the corroborative weight of published scientific research. Still, when the anonymous JHU cardiologist had reviewed my draft Table of Contents, the reaction to Chapter 3 (titled: “Finally. A Correct Diagnosis”) was simply “sounds like doctor-bashing to me” – and that defensive response was to a little bullet list of sub-headings!

I knew I’d need a visual outline of my 10-chapter draft Table of Contents to constantly refer to. A big foamcore poster fit the bill, propped up on my dining room table, covered with large Post-its, piled and rearranged endlessly, as pictured below. It made a nice decor accent and a conversation piece for visitors.

Very early on, I enlisted the help of my favourite daughter-in-law, Paula Dunn. Not only is she a tech whiz who rarely feels the urge to throw the laptop over the balcony railing as I do, but she is the most detail-oriented proofreader and grammar expert I know. She was also kind enough to memorize the entire Chicago Manual of Style (that’s the writing guide required of all JHUP authors) so that when she was proofreading my early drafts, we’d know if I were appropriately following the writing guidelines. Here’s a typical shot of Paula at work on my book (while on vacation in Harrison Hot Springs, I might add, with her hubby/my son Ben). While Ben was out having fun in the hot springs, apparently, Paula chose to be indoors in the hotel proofreading my draft manuscript to help me meet a deadline! (Thank you, thank you, thank you, Paula!)

        My daughter-in-law Paula, proofreader extraordinaire!

I had to keep to a regular writing schedule which, because of ongoing cardiac issues, I was not good at doing. Unlike my blog articles, which have neither deadlines nor any need for third-party edits, suddenly I now had big deadlines marked with a red Sharpie on my calendar, and countdown pressure to produce something quite fabulous by those deadlines.

I wasn’t used to writing for anybody else, but suddenly I had to not only send the finished product to one JHUP editor, but the draft would need another final round of feedback from their internal reviewers (the cardiologist, the Editorial Advisory Committee, and the Faculty Board).

Martha Gulati, MD, FACC

I needed somebody to write the book’s foreword for me – but it couldn’t be just anybody. I knew that, in a perfect world, it should be written by somebody who is highly respected in the field of cardiology, somebody with expertise in women’s heart health specifically, and somebody I admired who was also familiar with my work. I gathered up my courage and asked Dr. Martha Gulati (a cardiologist I’ve described here as one of the true “rock stars of cardiology”) – and I was over the moon when she immediately said YES! Her beautiful four-page foreword made me cry when I first read it.  (Thank you, Dr. Martha!)

Most days, I spent a couple of pre-breakfast hours (when my brain seems to function best) working on the book. The smartest decision I made was to keep participating in as many daily social outings as possible (e.g. my weekly walking groups, coffee with friends, taking my darling grandbaby Everly Rose to daycare in her stroller four mornings a week). But much of my post-writing hours later in the day were spent crashed on my big red chair in an exhausted heap trying to recuperate enough to write some more the following day.

I was also well over my maximum word count. My book included a unique chapter called Carolyn’s Patient-Friendly, Jargon-Free Glossary of Confusing Cardiology Terms at the back of the book. I’m really proud of it – but it’s over 8,000 words long. How strictly does JHUP count words, really?

I’m sure now, in the deadline-free luxury of hindsight, that relentless exhaustion was what led to a few dark periods of feeling utterly stuck during the summer of 2016. I’d seesaw between paragraphs that fell effortlessly into place, followed by feeling like I was writing and rewriting the same awful paragraph for days with no hope of ever improving it. I vehemently disagreed with JHUP staff over the title. I lost entire chunks of the  manuscript that had somehow disappeared from my new Mac and had to be rewritten at the last minute. This was either going to be the best heart book ever, or the most useless garbage ever – depending on how tired I felt.

Finishing the book. . .

I made my first draft deadline to send in the completed draft manuscript on time, and then I waited for a response. And waited. And waited. What was taking so long to hear back from JHUP?

My question was answered a few days later with a return email from Jackie that basically said “I LOVE IT!” Even the introductory preface I’d written for the front of the book was described as “a masterpiece”. Whew. . .

The next step: the entire draft manuscript needed to be reviewed by a cardiologist for his/her assessment. This makes sense. A publisher of JHUP’s status and reputation would of course expect that the content of a heart book bearing their name is credible and medically accurate. But tracking down a busy Johns Hopkins University cardiologist who has the time to spend weeks casting a critical eye over 70,000+ words of a new heart book must be a tough job. Happily, the same cardiologist who had approved my original sample chapter and draft 10-chapter Table of Contents almost a year earlier was interested in reviewing the completed manuscript now.  But wasn’t this the same person who thought that even saying the word “misdiagnosis” equaled doctor-bashing? Should I be worried? My target readership, after all, is NOT cardiologists, but their female patients.

The month of November 2016 passed agonizingly slowly. When the cardiologist’s review comments finally arrived, I opened the file to find that the reviewer had called my book “an important new contribution to the literature”. (Thank you, Dr. Reviewer!)

But what knocked me right out of my chair was this little assessment, almost a throwaway line on the second page of the review: that Chapter 7 was irrelevant to patients, and should be deleted.

I was so shocked that I had to go back and open the file containing my draft manuscript and look up Chapter 7, because I honestly couldn’t remember what it was in this chapter that rendered it so objectionable that it deserved to be trashed. Then I had to have a wee lie-down just to pull myself together.

Let’s just say that in follow-up communication with Jackie to discuss the reviewer’s comments, I argued that, in my opinion, Chapter 7 was actually the most patient-centric chapter in the entire book (and did I really have to mention the irony of a cardiologist telling a female heart patient what is or is not relevant to female heart patients?!?)  Chapter 7 would end up staying in, as is. I’ll leave it to you readers to determine whether the reviewer was correct when you read the book.

The next steps were a blur while we waited for the copy editing stage to finish.  Meanwhile, I heard from the publisher’s graphic design team who were working on my cover, the sales team who would be selling my book to bookstores, the marketing team who would be publicizing my book to media and book reviewers, as well as the catalogue team who were describing my book for the 2017 fall/winter catalogue of new JHUP books.  Here’s the gorgeous catalogue cover, below:

The catalogue was followed shortly by an unexpected gift in the mail: a box of business cards with my book cover on one side, and pre-ordering discount information on the other from JHUP publicists. (Thank you, Kathryn Marguy!)

But the best news amid all the fuss was landing my wonderful new copy editor, Deborah J. Bors. Her official title: Senior Production Editor, a longtime staffer at Johns Hopkins University Press. Debby would become my go-to person from now on. Her first email to me after she had edited the entire first draft was so encouraging, adding that she felt “truly privileged to have the opportunity to work on an important and life-saving book.”  Our working relationship evolved over months and was one of the highlights of my book experience. I learned that I could confidently trust Debby’s wisdom and experience, and that any changes she suggested inevitably made for a better book – well, maybe except for those Tim Hortons maple dips! (Thank you, my dear Debby!)

But we still had lots of editing left to do. I had to carefully go through the book page by page now, incorporating Debby’s editing suggestions, adding another deadline on the calendar to get everything sent back to her. Several weeks later, the page proofs arrived (they’re the unbound finished pages just as the book will actually look, including page numbers) and that meant another page by page proofreading process to see if any overlooked errors remained in the page proofs. Once again, I met the page proof correction deadline on July 21st, and a week later I met the index deadline, too. It was All Book, All The Time around here, 24/7.

I loved doing the index, which meant going through the whole book looking for key words or phrases or people’s names, grouping them appropriately, and adding page numbers to help readers looking for a quick way to find a specific topic. Paula and I had several meetings to discuss this index – in person, by phone, via email, but our favourite indexing meeting was over Sunday brunch. Here’s a pic of me taking a break from indexing to share an order of lemon French toast with her. I think I look remarkably calm, considering. (Thank you, Belleville’s!)

On August 2, with the index returned and rechecked for accuracy, I could follow Debby’s advice: “Rest now and do not worry about anything and just enjoy anticipating your wonderful book coming out!”

About three restful months later, the Fed Ex man delivered a cardboard box of advance review copies to my door (below).

The reality hasn’t yet begun to sink in: my two-year adventure is coming to an end, and another one is about to start when the books are soon shipped out to bookstores and start generating book reviews and media interviews.

Already, I’ve had experiences with two different cardiologists who have seen one of the advance copies, saying something polite like “Oh, very nice. . .” but then doing a double-take when they saw the publisher’s name, stopped in mid-sentence and said some version of “Wow! Johns Hopkins University Press!??!” (Thank you, JHUP!)

See also:

Author photo for book cover: Robin Duncan

Q:  What’s your best advice for balancing a big project with the demands of real life?

37 Responses to “A Woman’s Guide to Living With Heart Disease: my blog-turned-book project!”

  1. Dan Curtis November 1, 2017 at 11:05 pm #

    Fantastic!! You did it!!

    Liked by 1 person

  2. Bren November 1, 2017 at 4:23 pm #

    Carolyn, in December 2014, in the middle of a long, painful, anxiety-provoking night, I discovered your blog.

    Your wise words and proactive (aka kick-ass) attitude saved not only my sanity (Am I crazy to rely on my instincts that my heart is not “just fine”?) but perhaps also my life. (Yep, my cardiologist said I most likely would have been in deep trouble had I not kept advocating for myself after an abysmal ED visit and a “normal” stress test.) I will be forever grateful that I listened to you and allowed your voice to join mine!

    I’d also like to add that I almost spit out my tea when I read that Dr. Reviewer deemed Chapter 7 to be irrelevant to patients, after which I immediately thought, “Oh, I bet it’s not, and I bet she kept it in the book.” KUDOS to you for continuing to fight for your voice to be heard and respected — and for giving all women who face the challenges of heart disease, especially Non-obstructive Coronary Artery Disease, another tool that is both enlightening and action-inspiring!

    Liked by 1 person

    • Carolyn Thomas November 2, 2017 at 4:57 am #

      Wow. Bren, you just made my day… “I will be forever grateful that I listened to you and allowed your voice to join mine!” That’s the best thing any writer could hear, that efforts here can actually help readers feel less alone. It’s also why I loved Dr. Jonathon Tomlinson’s essay, “You did the right thing by coming here today” – (we WANT to be validated for making the call that something is very wrong with us, and more important, we don’t want doctors to make us feel stupid when we do). Thank you so much for your kind words.

      Liked by 1 person

  3. Pat M. October 30, 2017 at 12:16 pm #

    I’m so happy and proud that you have done this! ❤️ Think how many more women will be helped!

    Liked by 1 person

    • Carolyn Thomas October 30, 2017 at 5:49 pm #

      Thanks, Pat! I love thinking about that, too – which is why I’m encouraging every woman reading this to request that your local library orders a copy, too. Even if women can’t afford to buy a book, they should be able to get it free at every library!


  4. Christine Khayat October 30, 2017 at 6:06 am #

    Carolyn, I am so happy for you and congratulations on all that you have accomplished. I found your blog while in the CCU in hospital after having a heart attack and before my stent was put in. My iPad was my connection to both friends and information while I was confined to bed (I had my heart attack on Saturday night and at that time the cath lab wasn’t staffed on weekends; if I needed angioplasty immediately, I would have been transported over the border to Detroit Henry Ford Hospital).

    Your blog was so helpful to me in my shock of having a heart attack, it helped me navigate those first few days, and has been something I look forward to each week.

    Liked by 1 person

    • Carolyn Thomas October 30, 2017 at 6:32 am #

      I just love hearing stories like yours, Christine (not that you had a heart attack, but that you were able to find really useful information at just the right time!) Wouldn’t it be great if every CCU had a lending library that included my book, and a hospital gift shop that carried my book for sale!?


  5. Kathleen October 29, 2017 at 4:28 pm #

    So, so happy and grateful! Congratulations! I had guessed that you had a book deal, and it sounds like you found the dream publishing team. Thank you for sharing the story of the cardiologist’s review of Chapter 7. Again, hooray for you! Hooray for us!

    Liked by 1 person

  6. Cathy Aumack-Bandy October 29, 2017 at 1:11 pm #

    So Proud of you and to say I know you. BTW your book is “Temporarily out of Stock” on Amazon.” Has to be a record…

    Liked by 1 person

  7. Dr. Ruth Simkin October 29, 2017 at 12:57 pm #

    Congratulations Carolyn on an excellent production of your book. Look forward to reading it, especially Chapter 7. You have done an amazing job of turning an unfortunate disease into a positive way of living and sharing with others.

    It’s an amazing job you’ve done, and I’m proud that I know you. Best of luck with your new book.


    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 1:54 pm #

      Thanks so much, Dr. Ruth – lovely to hear from you! I think Chapter 7 might turn out to be the most popular part of this book at this rate! It contains sub-headings like “There’s No Fair Fairy in Life” – a reality I think you could probably relate to yourself! (but according to my reviewer, “irrelevant to patients”).

      Take care and thanks for your comment.


  8. Deborah Walker October 29, 2017 at 12:06 pm #

    Wonderful news, Carolyn! My copy has been duly ordered and I’m going to flip to Chapter 7 as soon as I get it.

    Your writing journey, while ten times more complicated and more important, reminds me of something I took on about 5 years ago. I entered the National Novel Writing in a Month project (NaNoWriMo – Google it!). Each year during the month of November thousands of people around the world slave away on novels that must be written between November 1 and 30th. Your descriptions resonated with me because I found myself in the same situations you describe. I had to discipline myself much like you did: got up early to do my writing and ensured I didn’t miss out on life’s little enjoyments. I also recall the strange phenomena of things coming together really easily or getting stuck in a dark place of re-jigging the same old stuff for days.

    Good luck with the media frenzy and thank you for doing this important work.

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 1:45 pm #

      That’s a great analogy, Deborah! Do you remember the 3-Day Novel Contest that used to be in Vancouver sponsored by Anvil Press? In the 70s, contestants had to go in person squirreled away with everybody else in a big hotel meeting room, then they changed it to the honour system where you could write from home (Friday to Sunday). Don’t know if it’s still going. It has that economy-of-effort appeal to me (insanely obsessed for a short period of time, then you’re done!) 30 days seems like a luxury, and my 2 years seems like forever before a deadline rolls around (although it sure didn’t feel that way!) It just stretches out the angst for two years… 😉 (Don’t forget to let me know what you think of Chapter 7!)


  9. Pilgrim125 October 29, 2017 at 11:42 am #

    Congratulations! Such a wonderful accomplishment!

    Liked by 1 person

  10. Jalilah October 29, 2017 at 10:21 am #

    You are an amazing woman. I applaud your work, your efforts, your commitments. I sincerely find you comforting in letting the world know how to fight meaningful battles while caring and sharing for others. Your daughter-in-law, your doctors, and family have supported you is KEY. You show us how to push on and leave behind all obstacles.

    Much Congrats, thank you – you are a 🏆!

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 11:20 am #

      Okay, now you’ve done it Jalilah – I can feel my head swelling already! I really appreciate your generous words, and you are so right about the importance of support from so many others.


  11. Sunny Mills October 29, 2017 at 10:20 am #

    I’m so pleased and excited for you, Carolyn! Your blog has been so informative and even a lifesaver for many readers and the book is the perfect to way to get this information into more hands and minds…and hearts!

    A very warm congratulations and thank you from a faithful reader……

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 11:18 am #

      Thanks for such a lovely comment, Sunny, and for being one of my ‘regulars’! ♥


  12. Jennifer Reid October 29, 2017 at 10:00 am #

    Carolyn, my HEARTfelt congratulations go out to you this morning.

    I have enjoyed reading your blog for so long now– you deserve all the happiness and joy– to finally be holding the finished book in your hands. Wow. I find myself thinking about your ‘spiritual’ joy’ also… realizing that your experiences, your fierce determination and words have produced a body of work that will be necessary reference material for generations of ‘heart sisters’ to come.

    I will look forward to reading this excellent book. Thank you. 😍

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 11:09 am #

      Beautifully written, Jennifer — I got a few goosebumps reading your line about leaving a ‘body of work’ as a legacy. In early conversations with Jackie at JHUP, we did discuss why anybody would buy a book when you can go online to read very similar content on the blog for free. But Jackie and I agreed that there seems to be something about a book “in your hands”. Thanks so much…


  13. Cantrell October 29, 2017 at 9:31 am #

    Congratulations Carolyn! You deserve this and thank you for the continuing support to women.

    Liked by 1 person

  14. Pauline Lambert Reynolds October 29, 2017 at 8:22 am #

    What an interesting article! After reading this, I’ve changed my mind about writing that memoir. (lol)

    Liked by 1 person

  15. Holly Shaltz October 29, 2017 at 6:49 am #

    I will be preordering your book! My “big project” is researching my own health issues – cardiac and endocrine – and my best advice is to take some time off, hourly, daily, and maybe a full day per week, to do something social, creative, fun, or restful – something as unrelated to the big project as possible. From soaking in a magnesium bath to taking an easy walk to doing a little simple embroidery, I’ve found low-impact activities that suit my very limited energy yet provide something positive in return.

    PS I can’t WAIT to read Chapter 7! 🙂

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 8:11 am #

      I love that advice, Holly! Doing someting “social, creative, fun or restful” every day is especially important for anybody living with any chronic condition. It’s so easy to slide into isolation and despair when you feel bad. Chapter 7, by the way, contains lots of “irrelevant” stuff (like trying to find meaning in a meaningless diagnosis…)


  16. Penny Wolf October 29, 2017 at 6:47 am #

    Congratulations! How exciting to have your work so honored that Johns Hopkins wants to publish it!!! You deserve it!

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 7:39 am #

      Thank you! You are so right, Penny – being approached by such a prestigious publisher out of the blue was a huge honour!


  17. Dr. Anne Stohrer October 29, 2017 at 6:31 am #

    So excited – waiting for my copy with baited breath.

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 6:38 am #

      Thanks Dr. Anne – I’d love to hear your feedback after you read it!


  18. Mirjami October 29, 2017 at 5:51 am #

    Dear Carolyn,
    what a throrough and interesting review of your book project. It makes me curious to read it. My book order will come 29.11. Had not Self-Publishing been easier? Nobody had told you what to write or not? But now you have a famous publisher behind you. I hope it will bring you a lot of money.

    Liked by 1 person

    • Carolyn Thomas October 29, 2017 at 6:11 am #

      Thanks, Mijami. I’d never even thought about writing a book until that day in September 2015 when the offer landed on my lap! You’re right, a well-known academic publisher can lend instant credibility, especially for a book that’s based on a medical condition.



  1. Journeying Beyond Breast Cancer - December 3, 2017

    I’ve mentioned here before that Carolyn Thomas has turned her award-winning blog, Heart Sisters, into her first book “A Woman’s Guide To Living With Heart Disease”. As you know I feature Carolyn regularly on the weekly round-up for her insights into being a patient, dealing with a patriarchal health system, and living with the physical and psycho-social fallout of a chronic disease.

    Recently I had an opportunity to interview her and I learned so much from her insights on patient advocacy, standing up for yourself, and writing a book from your blog. I think you’ll enjoy learning from her too. Check out the interview here.


  2. Journeying Beyond Breast Cancer - November 12, 2017

    […] ….so excited that Carolyn Thomas @HeartSisters has turned her award-winning blog into her first book “A Woman’s Guide To Living With Heart Disease”. She’s an incredible writer, an inspirational advocate, and has been a huge influence on how I approach my own advocacy work…


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