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

Some links in this blog may generate a very small commission, but I only post what I love.

Ever have one of those months when everything possible could go wrong? Why does the hard stuff always have to come in bundles? Sometimes it feels like the walls are tumbling down around me.

This was August.  

My Instagram account was taken down unfairly. Since you can't reach anyone directly at IG and messages go into a big dark black hole, my only hope was to hire a consultant to help me get it back. He's working on it, but after two weeks, I'm still without an account.  Seven years of hard work and a following of 34,000+  grown honestly, organically, and authentically has disappeared into thin air. Poof. 

If you follow me on "the Gram", you'll know that in addition to style and beauty inspiration, I use my account to generate donations and visibility for Uncommon Threads, the nonprofit I founded that supports low-income women.  I also raise awareness about Kicking Cancer in Heels, a social media community of hope for women impacted by cancer.  Losing my IG account feels quite wrong and downright outrageous.  Saga to continue. 

I visited my 97 year old uncle and 90 year old aunt who I haven't seen in a year. My uncle has been like a second father to me and it was heartbreaking to see him failing.  

I got the news that treatment for my leukemia will start in November. After being in watch and wait for four years, it's time.  As much as I've tried to prepare myself, I'm still anxious and quite nervous. I'm someone who doesn't even take a Tylenol for a headache!

Let's kick cancer together in this sparkly tee from @2dye4nyc with 10% of proceeds benefitting The American Cancer Society. Order by emailing Alyse at alyse120@gmail.com

Having said this, I really do try to stay positive.  I work remotely for Uncommon Threads doing things behind the scenes that make me feel connected.  I've seen family and friends for outdoor visits (thank goodness for warm weather!), and Richard and I have escaped to Vermont several times.  My daughter Alyssa and I even took Penny to Storyland (safely of course). 

Similar dress here. Penny's was handmade :)

Richard and I celebrated our 18th wedding anniversary at the Barnard Inn in Vermont. It was amazing! Cheers to the good times!

Vermont is my happy place! Shop the jumpsuit here. It feels like pjs!  Reasonably priced too.

I wore this jumpsuit to dinner  in Woodstock, VT. I love how I can dress it up or down.  It's on sale--highly recommend!  Sandals here.