Life as it was.

Well, almost.

It's been eight months since I finished a year-long treatment for leukemia. Over the past several months, I've finally been able to resume "normal" living...going to restaurants, weddings and other events, and shopping at stores without a mask.  After four years of living like a recluse, life as I knew it is a wonderful thing.

But it's not perfect.  There's an anxiety that goes along with reentering the world, along with a self-imposed pressure to fully catch up on all that I've missed. 

I just finished reading Between Two Kingdoms, the autobiography of Suleika Jaouad, who was diagnosed with an aggressive form of leukemia at age 22, and has since gone through two bone marrow transplants. She talks about the trauma of cancer, the isolation associated with being immunocompromised, life's uncertainties, survivorship, and most importantly, living life to its fullest.

I can relate to her experiences and feelings, as well as the fear of living with a serious illness. But one remark stood out to me.

She talks about living like it's your last day on earth and how this approach can actually be stressful given the pressure to "do it all" and to jam-pack every day. Instead, she suggests living like each day is  your first...live with wonder, fun, curiosity, discovery, and playtime. 

Since my cancer diagnosis and reentry into normal life, I've felt the need to do everything that I've missed over the past four years. There's been internal pressure to overload my schedule and it's been a bit exhausting! 

Living each day as if it's my first, changes the landscape. Instead of causing stress, it opens me up to experiencing life with a newfound joy.  Not a bad way to live!

It also challenges me to experience gratitude, and to find happiness in the small every-day moments that make life meaningful and full. 

However, living this way is also about embracing life's uncertainties and the unknown by becoming resilient and adaptable. After all, none of us know what tomorrow, or for that matter, the next second will bring.  When we spend the precious time we have on this earth worrying about what "could" happen, we lose the here and now.  

Life is a gift and when we treat it as such, we experience the world in a whole new way. And I have to say, it feels pretty darn good! 

If you haven't read Between Two Kingdoms, I highly recommend it. It's one of the best (if not "the" best) books I've ever read. I'm grateful to Suleika for the reminder to get of overdrive mode so I don't miss one glorious day of living.  Find her book here. 

One last thing and a topic for another blog. Cancer has also taught me to rid my life of toxic people. 

More to come. 

Thanks for stopping by.

xx Susan

P.S. Don't forget to sign up for my newsletter so you don't miss new blogs. The sign up is at the right side of the page on a PC or at the very bottom of the page on your phone. 

It wasn't a Christmas tree kind of year.  Between grueling visits to Dana Farber for cancer treatments, no holiday gatherings or parties, and my kids being away for Christmas, I just wasn't feeling the holiday spirit. It's not that I'm depressed, but I've had zero motivation to get a tree or decorate the house.  Bah humbug.

I'm so lucky to be a part of an incredible support group called CLL Women Strong for women living with Chronic Lymphocytic Leukemia (CLL), which I cofounder and facilitate with my friend Michele Nadeem Baker.  Our group members are the most amazing, kind, and supportive women.

I posted an Instagram story last week about my pitiful holiday decorations (a few straggly branches on the mantle) and the fact that I wasn't getting a tree this year.  Besides lacking the spirit of the season, our "faux" tree is a train wreck. A few years ago we decided to make the switch to an artificial tree and purchased one of the fold-up umbrella types.  Opening it was a breeze, but folding it up with a joke. Richard and I simply couldn't figure it out, so we dragged it to the basement after the holidays, scratching the walls and woodwork on the way down.  It's been pitifully sitting on the cellar floor (fully opened) since last Christmas. Due to basement construction work, now it's almost impossible to get the tree upstairs.  Couple this with the fact that I'm feeling like Scrooge, and it's a treeless Christmas.

Not so fast.  Catherine, a support group member and new friend, took pity and asked if she could buy me a tree. As sweet as the gesture was, of course I said ''no''.  How could l accept her offer since I can easily afford to buy one myself? I thanked her profusely for her kindness, but declined.

Fast forward to a week later, Richard announced that there was a tree on our front steps.  I thought he was kidding, so I brushed him off.  But yep, the sweetest 3' live tree in its own stand was sitting on our front steps.  I knew right away who had sent it. 

I texted Catherine to confirm that she was my Secret Santa and got this reply.

"LOL what tree?!? The lights will come on Wednesday and little red and gold ornaments on Thursday so you don't have to go digging around for anything.  Easy peasy! I want you to feel the Christmas spirit and know that you are loved and appreciated."

Such kindness. Such amazing humanity. Such love and friendship.  I cried tears of appreciation. This was truly one of the nicest things anyone has ever done for me. Catherine, thank you for making Christmas brighter and happier. It's amazing how this tree has shifted my mood.  I smile every time I look at it.

Penny loves the tree too and we had so much fun putting the decorations on it.  It's just her size!

As you may know, I started treatment for Chronic Lymphocytic Leukemia (CLL) last week. I've been grateful to remain in a "watch and wait" for the past four years, but honestly, it hasn't been as good as it may seem.  I felt like I was walking on eggshells, not knowing when my health would go south. Imagine living with cancer, but not doing anything about it!

A few months ago, it became apparent that the time had come for treatment. My white blood cell count (WBC) hit 345,000 (cancer cells), my bone marrow was at 90% cancer, and some of my other numbers bottomed out.  Although there is no cure for CLL, there are treatments to keep it at bay and even catapult a remission (I'm hoping for that!).  

I had the option of choosing between a trial and a standard treatment at Dana Farber in Boston.  After digging into the research and speaking with doctors and other CLL patients, I decided to go with the standard protocol, a combination of Obinutuzimab (infusions) and Venetoclax (an oral drug).  The treatment  begins with infusions that happen over six months, followed by the oral drug which gets introduced three weeks after the start of the infusions and carries over for the duration of the year.  At the end of the year,  a bone marrow biopsy determines if remission is achieved. Patients on this treatment  plan with my cancer markers, have an 80% chance of going into a remission for 5+ years until they need additional treatment.  These drugs literally blast cancer away like dynamite.

Let me back up to tell you that I'm the type of person who doesn't even like to take a Tylenol! So the thought of pumping my body with toxic drugs took quite a bit of processing.  I had to shift my thoughts and look at the treatment as a "GOOD THING", instead of something harmful.  Gratitude helps too.  I'm grateful to live near excellent medical care and have access to cutting edge drugs that could put me into remission. I'm also grateful for the support of my husband (who is incredible), friends (old and new), family, support groups, and community. When life throws you lemons, squeeze some lemonade.

And of course, I want to LIVE!  After all Penny needs her Sue-Sue, and I have lots of memories to make with my amazing kids and family.

I started the first two infusions last week, and although the experience was far from fun, I got through it. I did have a few bumps though, including a rapid heart-rate that caused a pause in the treatment.  All went well until Saturday when high fevers, uncontrollable shaking, and major fatigue set in.  The drug almost worked TOO well, creating a horrible inflammatory response in my body.  Imagine, 345,000 cancer cells dying within 24 hours releasing toxins in the blood! This was NOT what I was expecting.

Although I had a 4:00 a.m. ER visit last weekend and I'm still feeling HORRIBLE, I'm hopeful that the side-effects will pass over the week.  If things don't improve, a hospital stay may be necessary. Fingers crossed that this is transient.

Living with cancer and now dealing with treatment, has given me a personal understanding and deep empathy for what cancer patients go through.  It's hard, very hard.  When people say, "you have the good kind of cancer", "just live your life", or "you're lucky it's chronic",  quite honestly I get pretty angry.  There is NO good cancer and chronic diseases mean that there is no cure.  The anxiety and stress of having cancer (or any serious illness) is overwhelming. No judgement please--just support.

If you or someone you know is impacted by cancer (all types), please follow Kicking Cancer in Heels on Instagram and Facebook.  I co-founded this positive and hopeful community with the amazing and inspiring patient advocate Michele Nadeem Baker.  One of the gifts of the pandemic and CLL has been my special friendship with Michele and connecting with women all over the country sharing our cancer journeys and supporting each other,

By the way, I took comments off this blog because I'm having a hard time managing everything.  But please reach out to me on Instagram and Facebook. I love hearing from you! I also hope you'll subscribe to my blog to stay in touch.  The mobile version has the sign-up link at the bottom of the page, and desktop has it at the top. 

Thanks for stopping by.  Here's to a cure for ALL cancers!

With love,

xx Susan

 It's been a rough month.  In addition to my Instagram account issues and the stress that goes along with losing a business that I've spent seven years organically building, my health has taken a major turn in the wrong direction.  Chronic Lymphocytic Leukemia (CLL) is a strange beast with lots of unpredictable twists.  I've been blessed to have 4 1/2 years in a watch and wait (not as easy as it sounds), but over the past month I started running daily fevers and losing energy.  I met with a team of infectious disease doctors last week at Dana Farber, and they are trying to piece the puzzle together.  It's a mystery.

I need treatment NOW.  I'm having pretty serious anemia which is causing a very racy heart-rate and major exhaustion. I feel winded when walking up the stairs and I can no longer take my daily 3 mile walks. It's crazy. I've dreaded starting treatment for the past four years, and now I'm begging for it.

However, it's not that easy, my medical team at Dana Farber won't initiate treatment if there's an infection.  And pinpointing an infection can be like finding a needle in a haystack.  So far, all of my routine tests like chest x-rays and bloodwork results for Lyme and other infections, have come back negative.  However, there is something going on since a few of the tests point to an infection.  I hope to have some answers this week.

I've been blown away by the incredible support I've received from friends, family and my followers (you!). I get messages on a daily basis from people I don't even know personally, just checking in to see how I'm feeling.  I'm grateful and it truly warms my heart. Thank you.

One piece of good news....my Instagram account has been restored (after two months!)), but I've been told to post slowly as it's still fragile.  If you're not following me already, I'm at @TheMidlifeFashionista.  I'm also working on getting an email sign-up for this blog (it only took me seven years! ). Once the sign-up link is installed, I hope you'll opt in.  Should my IG account go down again, at least we'll be able to stay in touch this way!  Lesson learned. 

Again, thank you for your support, kindness. and love.  More to come. 

xx Susan