If you’ve read Come Back Tomorrow, you know that Will has Angioimmunoblastic T-cell Lymphoma (AITL), which is a rare form of blood cancer. September is Blood Cancer Awareness month, so I thought I’d share some information with you, not only about Will’s cancer, but about blood cancers in general.

Fast Facts

• Every 3 minutes, someone in the U.S. is diagnosed with a blood cancer; more than 1.3 million Americans are living with or in remission from a blood cancer.

• Although they are the 3rd leading cause of cancer deaths in the U.S., many people don’t know the impact of the blood cancers – leukemia, lymphoma, and myeloma.

• More than 1/3 of blood cancer patients do not survive five years after diagnosis.

What is AITL?

Angioimmunoblastic T-cell lymphoma (AITL) is a rare form of non-Hodgkin lymphoma, which is a group of related malignancies (cancers) that affect the lymphatic system (lymphomas). Lymphomas are cancer of white blood cells (lymphocytes) and can be divided depending on the type of cells, B-lymphocytes (B-cells) or T-lymphocytes (T-cells); AITL is a T-cell lymphoma. The lymphatic system functions as part of the immune system and helps to protect the body against infection and disease.

AITL is characterized by the transformation of a T-cell into a malignant cell. Abnormal, uncontrolled growth and multiplication (proliferation) of malignant T-cells may lead to enlargement of a specific lymph node region or regions; involvement of other lymphatic tissues, such as the spleen and bone marrow; and spread to other bodily tissues and organs. A key and differentiating aspect of AITL is dysfunction of the immune system, which can lead to a variety of symptoms. Affected individuals may develop a rash, persistent fever, unintended weight loss, and tissue swelling due to the accumulation of fluid (edema).  The exact, underlying cause of AITL is not fully understood.

The incidence of AITL in the general population is unknown. It is estimated to account for 1-2 percent of all people with non-Hodgkin lymphoma. Some reports state the AITL occurs slightly more often in men than women, but others state the ratio is 1:1. Most people develop AITL in their 60s and 70s. The disorder can occur in younger adults and, although rarely, has also been reported in children.

Treatment

Therapies used to treat individuals with AITL include corticosteroids, watch and wait, single-agent chemotherapy and multi-agent chemotherapy. Since AITL is typically considered an aggressive form of lymphoma, multi-agent chemotherapy is often a first-line treatment (as it was in Will’s case).  Although many individuals initially experience a remission, most will eventually experience a relapse (Will relapsed twice prior to the start of the story in Come Back Tomorrow).

One promising therapy for the treatment of AITL is the use of high-dose chemotherapy followed by stem cell transplantation. Researchers are evaluating the safety and effectiveness (efficacy) of high-dose therapy with certain chemotherapeutic drugs, possibly in combination with radiation therapy and/or other treatments, followed by stem cell/bone marrow transplantation to help restore healthy bone marrow (for further explanation, read “Sign up to donate bone marrow” below).

If you want to know more, the source article is here:  https://rarediseases.org/rare-diseases/angioimmunoblastic-t-cell-lymphoma/

What can I do?

Support a blood cancer organization:  The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and patient services.  They are a wonderful organization to support:  https://www.lls.org/ 

Sign up to donate bone marrow:  A bone marrow transplant (BMT), also called a stem cell transplant, is the replacement of the stem cells that differentiate into all the different types of blood cells in your body. To make sure your body doesn’t reject the transplant, the cells you receive must be a match for you, that is, for certain markers your cells carry. For patients with a blood cancer, finding a match can be the difference between life and death, and 70% of patients don’t find a match within their own family.

If you’re between 18 and 60, you can sign up for the bone marrow registry. All you have to do is fill out some paperwork online, then they send you a kit and you swab some cells from the inside of your cheek with a Q-tip and you send it back to them.  That’s it.  Then about two months later you’re on the registry. 

One in 540 registry members will go on to match a patient, and get to save someone’s life. It takes a little time and I’m sure it’s inconvenient, but to that person, YOU are the difference between life and death. No one else can give them what they need, and without you, they might not make it. What an incredible gift to be able to give someone, and what a horrible tragedy that 20% of patients who need a match don’t find one in time. If you can find it in your heart, sign up for the bone marrow registry.  It’s a simple thing to do, and it could mean everything to a patient and their family.  There are several websites, but I registered through https://bethematch.org/.  There’s lots of information on their site and they’ll answer any questions you might have.

In 2017, I went to a workshop at Romantic Times where the speaker passed out a “cheat sheet” for self-publishing.  The first item was “Write Book,” and underneath that, the page was filled with what seemed like a million things to accomplish.  I remember thinking, “OMG, I thought writing a book was the hard part!”  Oh, what a sweet, summer child I was.  Having gotten so far in the process that I’m about to put my first book on pre-order, I can tell you unequivocally that writing the book is not the hard part.  Not by a long shot.      

Honestly, I’m not complaining (much . . . maybe I’m whining just a little because it’s been a long weekend of marketing prep), but I wanted to share with you a bit about what it’s like to self-publish when you essentially know nothing about the process going in.

So, the nutshell version: You know nothing about anything, there are dozens of things you need to set up/learn how to do, and with every new task, you start at square one.

For a while, my days started in my head with this intro: “In today’s episode of things Amy knows nothing about but needs to master in a weekend . . .”

Now, the Dyson version:

So you’ve writen a book.  Yay!  It’s good to let it sit for a while after you’re done—you’ll grow less attached to your precious words and be more willing and able to see which ones are, in fact, not so precious.  Then maybe you take a run at editing it yourself before engaging someone professional—I needed to do this because I had some significant cuts to make before each book in this series had an acceptable word count.

When you get done editing (or possibly while you’re still trading drafts with your editor), it’s time to figure out what to do next.  The way I’m writing the rest of this post is a bit in stream-of-consciousness form, but honestly, this is how everything comes at you the first time.

How will you format the book?  Pay someone?  Vellum?  Calibre?  If you’re formatting it, do you want chapter header or section break graphics?  If so, these need to be designed.

Before you can format the book, you need to write the front and back matter: copyright page, dedication, acknowledgements, about the author, back cover blurb.

Are you publishing the book under your name?  A pen name? Will you create an imprint?  An imprint needs a name and a logo—those will need to be chosen and designed too.

What is an ISBN?  How many do you need?  Do you have to pay for them, or should you use the free ones? 

Cover:  Design your own?  Pay someone?  Work out all the details and pay for all the images and fonts you use.

Author Brand: Who are you?  A logo would be good—maybe a tagline too?  Do you have colors?

Platform:  Facebook—author page, group, or both? Instagram? Pinterest? Twitter? Tiktok? Goodreads?  A newsletter is essential, so learn how to use Mailchimp or Mailerlite.  You need a website.  Who’s going to build it?  Host?  Platform? Elementor layered over top to make it easier?  Will you have a blog?  Will you sell books from your site?  If so, learn how to set up e-commerce.

Get a separate bank account for royalties and a PO box or equivalent if you don’t want to publicize your home address.

Graphics:  Teasers, cover reveals, Facebook cover, posts for any of the media mentioned above, content for your newsletter and website.  Learn how to use Canva and/or BookBrush really fast and throw some more money at copyrighted images because you fell in love with them.  And OMG, what about swag?

Did we make it to the actual publishing yet?  Maybe.  Set up a timeline for cover reveals, ARCs, pre-order, promotions, and release.  Where to publish?  KU or wide (everywhere else)?  Ebook, paperback, hard cover, audio?  How many places do I need to upload to if I’m going wide?!

Metadata:  BISAC codes, keywords—which ones are best for your content and will get readers to notice your book?

Promotion: Teasers?  Ads?  Giveaways? Blog tours? Cross-promotion?  Bookbub?  A literal million other places?

And last, the catch-22:  You can’t set up an author page on Goodreads or Amazon without a book, and if you upload your book, you’re at least in pre-order, and you need to have Goodreads and Amazon author pages to support that.  Chicken?  Egg?  A little help here, Amazon?

I’ve missed things.  Lots of them.  I’d likely have heart failure if I knew how many hours I’ve spent on this “hobby” since last August.  But you know what?  I can format a book and design a website.  I can make all sorts of graphic content all on my own.  I’ve learned to use more than a dozen new software applications and have skills I wouldn’t have dreamed of having at this time last year.

I’m tired, and I think I might commit hari-kari if I have to Google one more set of instructions, but this week, I’ll see my cover on Amazon and Barnes & Noble and hold my own paperback in my hand.  And I think it’s gonna be worth it.  And you only have to run the gauntlet once to learn all these things.  So I’m prepared and confident for book two.  Have a good week, everyone.  I plan to.

-Amy