Living life… even now.

I haven’t written here in the blog because I have been focused on my book this fall. I was thinking of including some excerpts from the blog in the book and when I logged in and looked at the last entry I realized I was long overdue for an update. (sheesh!)

What a fall (literally) it has been for me. My health continues to decline as the chemo I have been on since August, Trodelvy, doesn’t appear to be working as well as we hoped. I still have the same amount of cancerous fluid in my abdomen and lung. Draining it on a regular basis as part of my palliative care. (Every couple days at home with the abdomen catheter and every two weeks in the hospital for the lung). Perpetual chemo infusions have worn down my body the past 5 months. Leading to blood transfusions, dose reductions, muscle wasting, lack of appetite days in bed, exhaustion, fatigue, weight loss, intestinal issues and much more. My body is so weak, I started using a wheelchair if I know i have to walk a long distance or stand for more than 5 minutes.

Yet, at the same time, my spirit is strong. On certain days in the chemo cycle I have enough energy to lunch with friends or go to my favorite plant shop. We’ve taken several vacations as a family - first to Zion, Grand Canyon and Bryce National Parks - just Team Mac. Sleeping in a beautiful tent overlooking Zion and flying in a helicopter over the Grand Canyon. Then, we spent my 45th birthday and Thanksgiving week with family in Boca Grande, Florida. Soaking up the sun, surf and each other’s love. While it was hard to be compromised on vacation, I was still so glad for the change of scenery and chance to make memories together.

Now we are faced with some hard decisions. We’ve decided to take a break from Trodelvy to see how much of my hardship is toxic chemo and how much is cancer. My abdomen catheter has stopped working so I’m filled to the brim with fluid and my legs swell daily to the point of not being able to walk. I have a procedure tomorrow to hopefully fix the catheter and help relieve this insane discomfort. I will also have by monthly lung drain to help my breathing.

Then, December 20th Jay and I travel to Boston to discuss my case with doctors at Dana Farber Cancer Center. I have consulted with them virtually over the past couple years and am looking forward to a face to face conversation and adding their ideas and perspectives to the conversation. This is a pretty big decision point as we move forward on the MBC roller coaster. My options are limited and my body is weak. But, we still hope we can find a treatment to dry up this fluid and bring me sustained wellness.

I don’t anticipate running or climbing mountains, but I do hope I can walk around my house and climb a flight of stairs without being exhausted. I would love to be a more active participant in life again. And most of all feel a little bit more like myself.

If you don’t follow along on social media you can find me on facebook or instagram - this is an easier way to share real time updates.

As always, thanks for your love and support. We are living life one day at a time… with hope.