Taking My Own Advice

About a year ago I wrote a blog called “Sugarcoating”. The aim of which was to enforce that talking about cancer should not be taboo. I’m going to take my own advice and not sugarcoat with you. 

 

Recently, I shared on my personal Facebook that my family had to cancel our winter vacation to Puerto Rico. Then, during the time we were supposed to be in Puerto Rico, I ended up in the hospital for a night and made light of being in the hospital penthouse over vacation. Many friends reached out expressing apologies for my trip getting cancelled, but friends, maybe I’ve been sugarcoating. It’s not about the vacation. It’s that I’m getting weaker and sicker and my liver may be failing.

 

If I always laid out these cold facts, it would be hard to be positive, so I try to find the humor or the silver lining. But, here’s the non-sugarcoated version. For some time now, treatments have not been working. Recently, I’ve been extremely tired and weak to the point where it feels burdensome and exhausting to reply to the sweet texts, messages, and posts I’ve been receiving. I’ve begun in-home physical therapy to build up strength due to weakness from the cancer.

 

My liver hasn’t been behaving. Bilirubin occurs normally when part of your red blood cells break down, then your liver takes the bilirubin and changes its chemical makeup so it passes through you. High bilirubin levels are a sign that the liver isn’t breaking down waste properly and clearing the bilirubin from your blood. Recently, the doctors at Dana-Farber have been wanting to monitor my bilirubin because my recent bloodwork showed the numbers creeping up. I’ve had an ultrasound and MRI to rule out a blockage and my overnight hospital stay was to monitor and run tests on the liver. The doctors have taken me off chemo because they think the chemo may be the culprit for the rising bilirubin numbers. We will get a more definite answer once the doctors can evaluate if it is the treatment.

 

When I was first diagnosed with MBC, there was so many wonderful people reaching out to me and that was how I started sharing this journey on Facebook and this blog. I never meant it to be the whole story of what’s going on, but to share my thoughts about different treatments, how to talk to your kids about Cancer, genetic testing, travelling with a terminal illness, etc. I don’t post or blog about everything because cancer affects everything and that would be a stream of conscience, not a blog.

 

I don’t share with you all the day-to-day of cancers because it’s so much and depressing. The day when I had to sit down after showering because it took too much to stand, the next day when I slept for 17 hours because my liver was causing weakness, the next day when my stomach was all kinds of unpleasant and I was too nauseous to stomach food, the next day when it took too much energy to take Wally to the bathroom, the next day when I cried because treatments aren’t working, etc. I’ve asked Mark, Michaela, and Max to do a lot more than I wish I had to. To be honest with you all, I had Michaela write this because I’m just too weak to even write on Facebook.

 

I chose to start this blog to share my thoughts with all of you, so this is the non-sugarcoated version. This is cancer. This is what has happened to so many wonderful people I know or have met along the way. Many friends have passed recently and it makes me plain mad and sad. This is the ugly side of cancer, not the silver lining-hopeful side. However, I still remain hopeful Dr. M has something up her sleeve to make my liver behave. I still believe in positivity and finding the good and silver-linings. But during these past few days, I didn’t care about my vacation, I care about my liver and I found it time to be really honest. 

 

Thank you to all those who have reached out and those who have read my mind that something’s up. I hope you all had a wonderful holiday with your friends and family and cheers to 2019.
Advertisements

24 thoughts on “Taking My Own Advice

  1. Susan, We’ll miss you at the family gathering tomorrow,  but are looking forward to seeing Mark. We’ll be thinking of you and hope your doctor will find yet another treatment that will help you to feel better. We admire your courage and tenacity, and how much you’ve given to others in the midst of your struggle with cancer. Love, Susan and David

    Liked by 1 person

  2. Susan, Thank you for the plain truth. I know this is coming one day…friends make comments like; you are always traveling, or you don’t let any grass grow under your feet. Unless you have cancer no one can understand that “time” is so precious. And that treatment controls every aspect of your life. I am back on chemo and trying to keep my head together because cancer patients should not have to worry about how they have to pay for Ibrance, $16,000 a month. But at this stage in my cancer this is an incredible new medication…it leaves the good cells alone. I am not facing what you are at this stage but in a heartbeat, as you know, life goes from planning for that trip to Puerto Rico to driving to the emergency room. The last round of chemo ended in canceling a great trip to my lungs filling with fluid overnight and oxygen and steroid treatments for months. So yes I travel when I can, clean when I have some energy…give thanks for my husband who does things like gifting with a roomba to make vacuuming one less chore to try to accomplish and I can feel like I still have some control over something so small in the big scheme of things. I pray every day that my lungs will hold up and all those major organs…because otherwise just like you the only choice is no chemo…the only thing between me and the next plan will not be some great vacation but rather settling my estate sooner. I know your journey … and sadly I know some people have disappeared from our lives because they can’t deal with the non sugar coated version that decides what path a MBC patient travel. God bless and many prayers.

    Liked by 1 person

  3. I too had my 50 yr old sister go down this path.
    You need to do what you can and want to do along with what info you share.
    I do have to say I wonder how you are doing even though we have never met, and I do like reading your updates.
    I will continue to pray for you!
    Take care

    Liked by 1 person

  4. As always, thank you for sharing with us. While I was one of those that could read between the lines, I never know what to say.

    Keeping you and your family in continued prayer, and sending lots of virtual hugs and kisses.

    Love ya!
    Nicki

    Liked by 1 person

  5. Susan, no sugar coating needed, I know I enjoy reading your post as continued inspiration for me to accept and then transform with each new challenging disease surprises mbc brings, typically without any advance warnings. Follow all the advise you have graciously shared: stay positive, be gracious and accept offers of help, exercise when possible (yoga stretches throughout the day is my new go-to), rest/nap/sleep when one feels like it, the focus needs to be on ourselves when under attack. Your grace and smiles remain inspritational, sending hugs frommTampaBay filled with FL warmth and sunshine for your soul🙏💜

    Liked by 1 person

  6. Dearest Susan, The absence of recent postings on your blog have confirmed my fears that you are going through a particularly difficult time in this terible burden you have had to endure. You, Mark, Michaela and Max are continually in my prayers. Xoxo. Monette

    Liked by 1 person

  7. Susan~
    That was not easy for you to do. You amaze me in so many ways. Watching my own mom pass from breast cancer many years ago I never understood things. She never told us what was happening. Thank you for opening up about all the sides of this disease I truly have learned so much. I’m sorry you have been having such a tough time sending you hugs and keeping you in my prayers. Xo 💕

    Liked by 1 person

  8. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

  9. Hi Susan,
    First of all, you get to share whatever you darn please. By now, you know how I feel about sugarcoating this disease, so thank you for sharing your hard truths, too. It’s never easy to do that. Hoping your liver starts to behave better and that you begin to feel better and stronger. Thinking about you and hoping the New Year is kind to you – hoping it’s kind to us all. xx

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s