Today’s the day! I’m on my way to Moffitt to have laparoscopic abdominal surgery so they can get tumor tissue. When the surgeon looked at my scans she saw at least 5 other tumors that weren’t noted by the radiologist. What else has he missed? They’re in the omentum which is the lining in the front side of your abdomen. Thankfully they’re fairly superficial and she’s confident she can get enough tissue for both NGS (next generation sequencing) to tell us what is causing this progression and also have enough tissue for the trial. Regarding the trial, after looking at flight options and the ease ..read more

It’s crazy to think just 2 weeks after I posted this on Facebook I started having back pain. 5 months later I was told I had lung cancer. I just don’t understand how you can feel so good and so strong but have extensive cancer growing in your body. I feel like that now – I lift weights 3-4 days a week and ride my bike at least 70 miles a week. I may feel a little more tired than normal some days but overall I feel great. But somehow there are at least 7 new tumors growing in my abdomen. If cancer wasn’t such an annoying ass, I’d be impressed by its resilience and adaptability ..read more

May 6th will be 10 years that I’ve been on Xalkori – my targeted therapy drug effective at halting ROS1 positive cancers. This was a miracle drug for me. It completely wiped out my 16 tumors that were trying to take over my lungs at the time. It kept my disease dormant for 5 years before a few little boogers slipped through and we had to bring in reinforcements by adding chemo to the mix. I first did 6 cycles of carboplatin and pemetrexed, then have continued with pemetrexed for the last 5 years (on May 16th officially). This drug cocktail has not been easy, but it definitely could be much wor ..read more

EXCITING NEWS! (It’s long but worth it) As most of you know, lung cancer is EXTREMELY underfunded when comparing lives lost. It kills more than the next 4 cancers combined. The Department of Defense funds specific research called Congressionally Directed Medical Research Programs (CDMRP). One of them is the Lung Cancer Research Program (LCRP). A brief history: Since LC was added in 2009 it only received its alloted $20 million for one year. It then went down to $15m, $12m, then only $10 million a year for the next four years. This affects the programs ability to fund innovative research pro ..read more

“You have lung cancer, and it has spread to your spine.” I’ll never forget hearing those words. I went to the ER for relentless back pain that I’d had for 4 months. I thought maybe I had a herniated or bulging disc, but lung cancer never entered my mind. I was healthy, always tried to take care of my body, and I was only 40. I have been blessed to meet amazing people because of my cancer. Some of which have become close friends. I have worked on advisory panels, speaker’s bureaus, and traveled to dozens of conferences to educate myself so I could help others. This has been my way to feel usefu ..read more

I learned today that my previous oncologist died Tuesday. Dr. Nicholas Vogelzang was my dr for 9+ years before moving to Florida. His specialty was GU cancers and he was in research at U of Chicago for many years. I’m grateful he moved to Vegas and I was randomly assigned to him. About a year into treatment I started having progression and my oncologist wanted to start me on another chemo. I had learned about biomarker testing from other survivors on Inspire (an online patient forum). We did a biopsy but it came back inconclusive. I was then told my cancer center would be closing and I would n ..read more

Well after 2 1/2 years of evading it, COVID invaded my body, and I shared it with a few others. There have been times that I have been in crowded and potentially risky places but the week leading up to getting it only consisted of 2 outtings: Walmart (a quick in and out and used self-checkout) and my oncology office for chemo. I still wear masks indoors unless eating and am very diligent about hand washing. I assume most of us will get it at some point and this variant is highly contagious. It started with a hoarse voice (no sore throat), then a cough, sinus congestion, a SEVERE headache, foll ..read more

It sounds crazy, right? 60 infusions of toxic drugs pumped through my veins every 3-4 weeks. The standard protocol is every 3 weeks but after about 18 months we changed to every 4 weeks to give me more time to feel better and enjoy life. It seems to be working well. I was on aTKI (tyrosine kinase inhibitor) that kept my ROS1 driven lung cancer stable for almost 5 years before having slight progression. As I’ve shared before, a new biopsy didn’t give a clear direction for the next treatment so we added chemo to the daily TKI once the progression increased, and I’ve been doing that for 4 years n ..read more

I’m long overdue for an update. As you can see by my Facebook posts I’m diving right into life in Florida and really loving it. I’m in love with our house, our neighborhood, the parks, and of course the beach. Just can’t wait for Joe to be home in June to explore with him. Can I just say how grateful I am to have such a hardworking husband that makes so many sacrifices to provide for our family and make me happy. He’s a true blessing and I miss him fiercely. I just had chemo #58 yesterday. Yes, I’m as astonished as you are! May 6th will be 4 years ago that we added chemo (pemetrexed/alimta) my ..read more

This may be long……. As you all know, I’m a planner. I tried to coordinate everything so I could hit the ground running as soon as we arrived to Florida. We pulled into our new driveway on Nov 6th and I met my new primary care physician (PCP) on the 10th. I met NP Denise and she was wonderful. She went over my history and I told I was there for referrals to oncology (preferably Moffitt) and to pain management. I was hoping to expedite it as much as possible to avoid any delays in chemo which was due Nov 15th. I realize this was a long shot and figured chemo would likely be delayed a week or so ..read more