Between Two Kingdoms – Book Review

“Your cancer friend will know if and when they want to read my book.” – Suleika Jauoad

On Sunday February 14th, my phone was blowing up with texts from friends and relatives asking if I saw the CBS Sunday Morning segment on Suleika Jaouad and her new book called “Between Two Kingdoms”. I did not know about the segment.

I looked up her book and what it was about after a few people had told me it was about a woman named Suleika Jaouad, who was diagnosed with Acute Myeloid Leukemia in her early 20s just like me. She also had a bone marrow transplant. 

To back up a little bit, I am very selective not only about what books I read, but WHEN I read books. I didn’t feel that it was the right time for me to read that book for many reasons.

About a month ago, I was running last minute errands before going to Maryland for a few days, and I saw the book in Target. I picked it up, read the back, front and back flaps, and decided to get it for my little getaway. 

The getaway was not long enough, but filled with nice warm and sunny weather and I got to see some friends. What more could I ask for!? 

With those two factors, I didn’t end up reading that much while I was away. But I did start the book and read the first few chapters of her life leading up to her diagnosis. Ha, our lifestyles seemed pretty similar other than the fact that she was a senior in college when she started having symptoms, and I was 27 almost 28.

One of the biggest reasons why I was hesitant to get the book at first was because sometimes it’s really hard to hear about other people’s cancer experiences. Whether they are better off or worse off than you, it can be a big mental game. And she had my type of cancer which only intensifies my reaction to her story.

Reading the first few chapters about her life, her pre-cancer life, and how she had a wide variety of symptoms including extreme fatigue and anemia, all I could think about was how damn lucky I was and continue to be. 

When I was diagnosed with leukemia, I too had been living a life of going 100 mph. Isn’t that what you’re supposed to do until something, aka your body, tells you to stop?? 

Suleika was nowhere near lucky as I was in the beginning. She had a wide variety of symptoms and numerous misdiagnoses over the course of A YEAR. I thought I had the flu and had been feeling well for only a week. ONE WEEK. Read that again…

With that being said, sometimes you have to be an advocate for yourself and keep pushing your doctors for more tests and getting other opinions. Some people I have met through Instagram have been misdiagnosed for months and years, and it’s amazing how relentless they are to finding out what the heck is going on with their body. You know your body more than anyone else does, if something doesn’t seem right, GO GET IT CHECKED OUT. It’s much better for it to be nothing rather than hearing you caught something a little too late.

Back to the book! One of the reasons why I felt it was time for me to read it while I was away, was because of the 100 day road trip she took across the US visiting people who wrote to her while she was in the hospital. Months before I knew about this book, I wanted to do something similar. In fact, I did a baby version of this after I was done treatment and in remission the first time back in late spring/early summer of 2019. 

I was more excited to read the part of the book about her road trip than her diagnosis and hospital stays. 

While I don’t want to dive too much into the book, because I think everyone should read it… I dog-eared maybe 100/347 pages in the book. Some pages are marked because it pinpointed thoughts and feelings that I’ve had or currently have. Some pages are marked because they have many learning points for caregivers, family members, significant others, friends, and anyone in between.

All of those reasons are why I think this book should be read by everyone. It gives you a glimpse of what it is like to have your life turned upside down, for no reason at that, and a lot of the challenges that us leukemia survivors have faced.

Here are my top 11 thoughts that I want people to take from the book:

1) Cancer patients compartmentalize their lives into 2 or 3 parts: life before cancer and life after cancer. Or pre-diagnosis, sick, and recovering. My “sick”(plus Pandemic) phase has been so long that it does need its own category. I don’t feel like I am truly living my post cancer life just yet. Getting there!!

2) Leukemia treatments and especially bone marrow transplants most likely leave you infertile. Most of the time, we don’t have the time to do an egg retrieval before starting due to the urgency of needing to begin treatment ASAP. Please do not say “at least you don’t have kids” to someone who doesn’t have kids. You have no idea how badly that person has always imagined having kids of their own.

3) FOMO(fear of missing out) is one of the worst things that we go through, specifically if we are young. Between all of the time that we spend in the hospital, and being extremely immunocompromised. We watch our friends go on vacations without us, celebrate birthdays without us, and have weddings without us. Some events we can’t get back, ie. a wedding that happens once, so don’t get upset if we aren’t super excited to talk about certain things that are going on in your life, simply because it just reminds us of how our life is being put on hold for something that isn’t our fault #lifeinterrupted “The world is moving forward and I am stuck.” – Suleika 

4) It’s also hard to hear about people complain about stupid things. The beginning of the pandemic was honestly brutal. Everyone was complaining how they wouldn’t be able to go to a restaurant or a bar for 2 weeks, meanwhile I was praying I was allowed to start chemo on time. You’re complaining about eating too much food while I can’t even keep down the meal and a half a day. Just be thoughtful of what you’re complaining about with what the cancer patient is currently going through. And just with life in general! With that being said, don’t feel like you have to completely walk on eggshells either. If you feel that way, then the patient is probably going through a really hard time, and just listen to what they have to say and what they want to talk about. That helps more than you will ever know. 

5) Losing our independence is another difficult thing that we have to go through. Some cancer patients don’t have everything about their lives changed. I had to stop working, move home, and my treatments and recovering/healing became my full time job at 27. Luckily I didn’t need help physically(walking, bathing, eating), but during my 100 days post bone marrow transplant, I wasn’t allowed to cook for myself. I had to have lots of laundry done every week due to not being allowed to wear a piece of clothing for more than a day, could only use a towel once, and had to have my sheets changed every other day(from bacteria not from being soiled). Regaining our freedom and independence is something that we crave and thrive on and it is a very long process. We just want to be like our old independent selves.

6) Celebrate the smallest victories with us! Some days I felt too exhausted to brush my teeth. Some days I didn’t want to leave the couch. Instead of saying “you should do X or try Y” say something like “that’s great that you did A and that you’re trying to do B!!” We need help feeling successful and that we are moving forward even if it’s the smallest things. Things that we used to do without even thinking about it or having to make a big deal out of it. #celebratesmallwins

7) We have a haunting feeling that something terrible could happen again at any moment. For those of us who aren’t past the 5 year remission mark, and especially for those of us who have had cancer more than once, we are always terrified of it coming back. Probably even more so right after a clear test result. Hey, it’s happened to me twice… So please don’t think that just because our scans/tests are clear, that we are never worried about our cancer coming back. At one point we (hopefully) don’t think about our cancer every day. I can’t wait until that day!!

8) With the symptoms of leukemia being bruises and feeling like we have a cold, we are going to instantly think that our leukemia has returned the second we get one of those symptoms again. So you can only imagine how terrifying it has been during COVID times!!

9) Try your best to not remind us of how our cancer/situation/diagnosis has affected YOUR life. We are fully aware of how our situation has affected our caregivers’, significant others’, friends’, and family’s lives. Just try your best to not remind us of something that we already feel bad about.

10) Transitioning back to the real world, or into our new “post cancer life”, is terrifying. We’ve changed physically(hair & weight), we’ve changed emotionally(maybe more sensitive), and we’ve changed mentally. Everyone expects us to be the same as our “pre-cancer” selves, without realizing so much has changed behind the scenes. Be gentle if the patient doesn’t “seem like their old self”, because they aren’t no matter how much you want them to be. For the good and the bad. You all have gotten the slightest preview with returning back to “normal” post pandemic. Now magnify that times 20 and thats how we feel.

11) Trauma has a way of dividing your world view into two camps: those who get it and those who don’t. Which is why a lot of us cancer patients have become very close with “Instagram friends” who have also had cancer. To a certain extent, they understand what we’ve gone through, and validate a lot of our feelings. Those friendships are one of the best things about being in the cancer club. The worst part is when you lose one of those friends.

12) Most of us want to make sure that we leave a legacy of some sort behind. Whether that’s fundraising, starting a company to help cancer patients, or writing a blog. Anything that we can do to make a difference to that one. 

13) Lastly, Suleika mentions how everyone thinks you’re fine post treatment, but a lot of us feel lost. Our priorities have changed. Our wants and needs have changed. WE have changed. And it takes us a while to figure it all out. Suleika felt that all of the hard work of recovery and healing had just begun.

Here are some of my favorite quotes from the book:

“If I survive, it has to be for something. I don’t just want a life — I want a good life, and adventurous life, a meaningful one. Otherwise, what’s the point?” – Suleika

“The power of story is to heal and to sustain. And if we are brave enough to tell our own story, we realize we’re not alone, again and again.” – Suleika

“Ultimately, the events of the last few years have been a terrible lesson in being present — and not just being present in my own life, but being present in the lives of the people I love. Tomorrow may happen, tomorrow may not.” – Katherine

“You have to shift from the gloom and doom and focus instead on what you love. That’s all you can do in the face of these things. Love the people around you. Love the life you have. I can’t think of a more powerful response to life’s sorrows than loving.” – Katherine 

And my favorite quote:

“No, I would not take back my diagnosis if I could. I would not take back what I suffered to gain this.”

Suleika

And I could not agree with Suleika more. I may have lost a lot, but what I have gained far surpassed that.

Make sure you check out these interviews:

CBS Interview – the interview that everyone was texting me about!

Chatting with Cheryl Strayed – I have also read Cheryl’s book Wild which has been turned into a movie staring Reese Witherspoon which I have watched since reading the book.

What Dying Teaches You About Living – Suleika’s TEDtalk

House of Beautiful Business Interview – Suleika mentions how the beginning of the pandemic felt similar to going through treatment: isolation and living at home with her parents.

Have you read her book? Are you adding it to your list? Let me know in the comments below!