A Change is Going to Come

Long time, no blog you say? I feel badly but I have been out living life at full velocity in my favorite season–summer, after Tim/Blanket survived his bout with the kidney stone and I recovered from my free fall down the stairs. A change of scenery and pace was long overdue.

When I first started blogging 94 posts ago (hey, who’s counting) I tried to commit to it weekly. I was good for a while, a medical crisis brings that out in me, and I had lots to say before I untethered from earth. I began by wanting to share stories with my kids and tell them all the big things I might forget. Along the way it became much larger than that, more about life lessons mixed in with my sarcastic self observations and people (you) started following. If you’ve been with me from the start, there have been a lot of bumps and turns and a big fall off of the cliff, but with my health stabilizing, I find myself having less urgency to say all the things I wanted to say and I’m blogging less. But hey, it’s summertime and even metastatic breast cancer advocacy work slows down (although not for 113 people a day who die of MBC).

I participated in the MBC Metaribbon challenge and raised a lot of money for Metavivor through the very generous donations I received and managed to win a trip to Colorado in the process. Off we went to Aspen for a few days to see where Tim lived and worked for two years before coming East to meet me. I loved it, a rustic cowboy town at the base of a big mountain with very expensive shops and restaurants 8,000 feet above sea level. We even tried the Aspen Crud at the Hotel Jerome, a mix of vanilla ice cream, milk and rye. Weather was beautiful and all was good–until the trek over the mountain pass to Breckenridge where we would be staying for a week, 11,000 feet above sea level. As we rose through the mountains I felt light-headed and queasy but after braving the back roads of Ireland I figured it was motion sickness and popped a Zofran. We arrived safely in Breckenridge and decamped. Early the next morning I woke up panting for breath which of course led to a panic attack. Things went down hill from there (no pun intended). Soon I was vomiting and unable to eat. Something related to cancer you might think? Nah, I had regular old altitude sickness and seemed unable to stop the madness despite meds, a humidifier, small meals and a trip to the oxygen bar. Midweek Tim turned to me and said “do you want to leave early and go home?” I am not naturally a quitter but I had to throw in the towel. If you’ve been unlucky enough to go through chemo you would never volunteer to feel that way again unnecessarily. I am and always will be an ocean girl. We returned home to continue wedding planning while it took a full 2 weeks for the fluid in my ears to dry up. I’m not kidding.

In the mean time Dana Farber called and after much discussion, they wanted to harvest my white blood cells to study why I have had the longest durable response to immunotherapy at Dana Farber. This entailed a lengthy discussion with the researchers who were quite excited to meet me and wanted a photo with me for inspiration. Essentially they are hoping I might be the needle in the haystack that could unlock some answers about why I responded so well and possibly be able to develop a vaccine in the next two years or so. It was complicated because I couldn’t donate blood the exact way they wanted because of my risk of developing lymphedema in my left arm so we agreed to a compromise method using only my right arm. I signed the consent and off we went. A few days later we returned to donate my blood. As Dr. Rachel said “who wouldn’t want to study you?”

Candace Dalton, the Medium, is a friend and now she has a podcast called Healing Grace. She lives in Cali but was home visiting and asked us to do a podcast with her about MBC and my experiences. My friend Brunnie joined us and we spent an afternoon with Candace taping. Very fun! I’ll let you know next time when her podcast with us is posted in case you are super bored one day. Candace has a beautiful and soothing voice–her I could listen to!

In the summer I tend to think a lot about my parents and the beach cottage by the ocean that I spent every summer of my life until I got married. They were some of the happiest days of my childhood. Time to be outside exploring and playing with a readily available gang of kids and age and grade didn’t matter. Everyday was like a new adventure with lots of swimming, fishing, and waterskiing while waiting for the ice cream truck and my father to arrive every Friday. It was a Peter Pan like life. I miss my parents.

That being said, every summer comes to an end with the summer wind. All of my life I have gone back to school every September. This year will be the first official one in my life that I am not going back to school. It is bittersweet but change is good, right?

Today is head coconut’s birthday and next week she gets to walk down the aisle with her guy. Love is in the air. Happy Birthday Kelsey! Hope it’s a great one!

 

 

 

 

 

A change is definitely coming. Rest peacefully Aretha.