Mom (Buffy) and I spent the weekend in Philadelphia for a Living Beyond Breast Cancer: Metastatic Breast Cancer Conference. It’s been a while since I updated, so wanted to bring you all up to speed. 

Buffy’s last round of chest / lung scans were stable and we are so thankful to God for that good news! Back in January she had to stop her oral treatment plan due to an upper respiratory infection. When she resumed taking her Kisqali, we assumed the new rash and facial swelling she experienced was not associated with her treatment. Unfortunately it’s been determined that yes, it is a result of the meds due to something they call drug toxicity — ie: your body just can’t tolerate it anymore. When we landed in Philly on Thursday, OSU called to tell her to stop the treatment plan immediately until we can meet with them again and determine a new course of meds or action. 

This is definitely scary! No, it doesn’t mean her cancer has processed/spread but it does mean that this first line of defense tool in keeping it asleep or at bay is no longer an option. We expected to get at least two years out of the Kisqali but instead got about 5-6 months. Her team is trying to find a new CDK4/6 inhibitor that will work just as well. Please pray over this situation for us and pray the next suggested treatment will work just as well as the first line of defense. 

While in Philly, we learned a lot about metastatic breast cancer and met many folks on the East Coast with METs (that’s what they call it) that’s traveled to the bone like Buffy as well as lungs or liver. One lady has survived 17 years with METS but many of the wonderful ladies have just been diagnosed in 2022 to present like mom. It was an overwhelming conference but we both met new people and made some connections that I hope last a lifetime. Connecting with other folks my age who are caregivers for their parents was really moving and reassuring. The biggest takeaway for me from the weekend was the fact that cancer doesn’t care your age/background/status/dreams/gender, etc but that it’s so important to continue living while cancer accompanies you on this journey. One panelist was a 20-something young lady, recently married, who was diagnosed Stage IV metastatic at age 18 and given 3 years to live. Like I said, a very moving and educational weekend. 

OSU plans to do a full body nuclear scan in early June to check Buffy’s bone cancer. Again, please pray for her and the team for great outcomes. I can only hope and pray that one day we get the news of “no evidence of disease” — until then we cheer for stability and live each day to its fullest! She’s been experiencing some severe knee pain (xray said it was arthritis) and fluid retention so pray for those issues as well. 

It was eye opening to hear a variety of stories and testimonies at the conference. I learned that some people (family, community, church, etc) just “get it” and will come alongside the patient through all the highs and lows that come with cancer, whereas others will just never understand and it’s up to the patient to make a decision on how they wish to handle that. A lot of kind and caring individuals often tell Buffy how great she looks or ask if treatment is over yet, not understanding that this diagnosis is for life. Metastatic cancer is the equivalent of diabetes or heart failure — it’s a chronic condition that we’re trying to manage or keep at bay for as long as possible. Buffy isn’t defined by cancer but it will forever be apart of our story, for good or bad. 

Thank you all for the prayers, texts, cards, and more! We love each and every one of you ❤️