#stageivneedsmore

@projectlifembc is a virtual wellness house and we are having a virtual open house!! If you are part of the #mbc community or care for or about someone in the #mbc community, come and learn more about the amazingness going on. #mbc #projectlife #metastaticbreastcancer #thisismbc #stageivneedsmore #dontignorestageiv #mentoring (at Baldwin Park) https://www.instagram.com/p/Ce8lcfJAfmm/?igshid=NGJjMDIxMWI=

Just some gems from this weekend’s trip to #Orlando where we are moving in a little over a week. Moving during #chemo hasn’t been easy and we’re looking forward to seeing the end of boxes. Never been more aware of the low energy caused by chemo and probably the lingering affects of five years of #mbc treatment. It’s a hard thing to be a human under these circumstances. #stageivneedsmore #mbc #thisismbc #dontignorestageiv #thoughtsofametastaticmom #mbcgrief (at Miami, Florida) https://www.instagram.com/p/CeUohqCMzLd/?igshid=NGJjMDIxMWI=

Gifts from people who know and love you are so very special!! Thank you, @hakelsilke, for my “NOT DEAD YET” celebration!! #bcsm #stageivneedsmore #notdeadyet #friends (at Palmetto Bay, Florida) https://www.instagram.com/p/CdDf1thucUz/?igshid=NGJjMDIxMWI=

Are you living with #mbc? If so, this is a not to be missed webinar. Today at 4 pm eastern. #thisismbc #mbcgrief #stageivneedsmore #bcsm #dontignorestageiv (at Palmetto Bay, Florida) https://www.instagram.com/p/CVrqDAkAbag/?utm_medium=tumblr

It has been quite a weekend, one for the books. On Friday, I started developing some symptoms of what I thought might be a UTI. When things got worse on Saturday, I went to urgent care thinking I’d get some antibiotics. I should know better. Anytime I think something is simple, well, it’s not. The doctor at urgent care wanted to put me in an ambulance and send me to the ER. I signed out AMA and went to the ER and after many hours, left with the diagnosis of cystitis, pending cultures and medication, including antibiotics. It was a long night but the meds have worked quickly and I’m feeling so much better. Today was a wonderful day that included sleeping in, Halloween celebrations with friends at the park and a webinar focused on genetic issues with @survivingbreastcancerorg . Thankful for my mom, @beverlyschroeder56 who shared our family experiences with the ATM mutation, other guests who shared from their experiences and Dr Martir-Negron from @miamicancerinstitute, a geneticist who was just amazing in imparting her substantial knowledge in an understandable way. A true expert doesn’t need to show off and knows how to translate complex issues into accessible language. Dr Martir-Negron is an expert. This MBC Sunday series has been such a labor of love the last year and I’m so thankful for @lauracarfang and her willingness to jump into the deep end with me. #bcsm #bcam #mbcgrief #genetics #stageivneedsmore #thoughtsofametastaticmom #mci (at Miami, Florida) https://www.instagram.com/p/CVbrdvEATq3/?utm_medium=tumblr

It’s the 13th a/k/a #metastaticbreastcancerawareness day. I had to start my day with doctor appointments @miamicancerinstitute where we are working to figure out next steps in light of the progression that showed up on my scans on Monday. We have some details in place as well as testing and bloodwork done, chemo education tomorrow on what may be the right choice and flying to get a second opinion on Friday. I can’t think of a better day to draw attention to the fact that no matter what we throw at it, #mbc is a relentless and crafty disease, constantly mutating and changing to survive. If I wasn’t so freaking mad at how #mbc is going to end my life, I’d probably have a little admiration for how it can get around anything. The only thing that will save and/or extend my life is more treatment options, which can only be found with more research. To celebrate this ONE day during #bcam dedicated to those of us who have an approximately 20% chance of living for five (5) years, please consider a donation to @metavivor and join us tonight @lightupmbc LIVE at 8:30 pm. #bcsm #stageivneedsmore #dontignorestageiv #mbcgrief #thisismbc #bcam (at Miami Cancer Institute) https://www.instagram.com/p/CU-ZmqygSZi/?utm_medium=tumblr

It’s frankly been a pretty awful day. Found out yesterday that my current medication regimen is no longer working and I’ve new bone mets exactly where I’d been having nagging pain that just didn’t have a great explanation. Also, while the report doesn’t spell it out clearly, my doc and the radiologist are pretty convinced that the spot we’ve been watching in my lung is cancer, just not sure what kind. So, marathon appointments today to get more complete bloodwork, including a liquid biopsy, schedule “chemo education” for new meds, make an appointment with a cardiothoracic surgeon (one more doc added to my long list of specialists) and quietly go out of my mind. Not surprisingly, my blood pressure and pulse were much higher than my norm. Missed multiple appointments today and had to get coverage for my kids. Top that off with the women sitting in the registration waiting area without masks. Yes, I’m posting their picture publicly because a cancer center is the LAST place people should be cavalier with other’s lives. Yes, I told them to wear masks, they ignored me, I told staff about it, they ignored the staff, security officers came, they ignored them too. I told the staff on the way out that I’ll have to ask to wait elsewhere next time, especially since the visitor was blowing her nose and sneezing with her mask around her chin. I don’t need that anxiety on top of progression. Tomorrow is the one day this month allocated to those of us with #mbc and I’m feeling all the feelings right now. Hope you will all consider tuning into the #lightupmbc LIVE show at 8:30 pm eastern. @miamicancerinstitute, you need to protect terminal patients better. #bcsm #bcam #stageivneedsmore #dontignorestageiv @lightupmbc @305pinkpack #mbcgrief (at Miami Cancer Institute) https://www.instagram.com/p/CU8OyKxlGXg/?utm_medium=tumblr

I’m a little tired, a little caffeine deprived, a little anxious, and a lot grateful today. Just finished my quarterly PET/CT and had a LOOOONNNNG conversation with the new tech about #mbc after she made a few remarks that were just …. Wrong. I know she will be more careful with the next Stage IV patient she scans. Now in the Starbucks line to get some needed caffeine, some food and then it’s off to wait for results. My doctor is really good about not making me wait to get her perspective and the report should be in my portal in a few hours. Still, this scanning and waiting and wondering every few months is a lot to deal with. #bcsm #bcam #thisismbc #stageivneedsmore #dontignorestageiv #thoughtsofametastaticmom (at Starbucks) https://www.instagram.com/p/CU5GFehgjjR/?utm_medium=tumblr