lunhs cancer

Things are not great in CancerLand. My rising tumor markers and MRI changes have confirmed that the spot in my cerebellum has grown back and is starting to cause symptoms. The great/terrible/ironic thing is that I�m not facing widespread cancer progression; the only spot causing troubles is the same bugger in the cerebellum that we tried to remove back in October. My sense of equilibrium is off, and I was having headaches and nausea until we increased my steroids earlier this week. Now, some of the imbalance is likely caused by my trial drug - it is a frequently reported side effect - but certainly some is from the mass. Friends who knew me in my physical theatre / Dell�Arte days will find it strange that I now feel intimidated by a staircase lacking a rail. I reminisce about how I used to stand on someone�s shoulders without batting an eye. Flowers for Algernon�s Charlie comes to mind: I know I have done all sorts of physically challenging things in my life, but I cannot fathom them i...

I woke up last Wednesday to a phone call from my oncologist confirming that the MRI I had just had showed that, while it was slight, my brain mets are progressing. My fancy new TKI (tyrosine kinase inhibitor - a drug targeted to my ROS1 mutation), Lorlatinib, was not holding my cancer in check. The next best chance for me was to get into a trial for the newest TKI in development, TPX-0005 (it is actually far enough along now in development that it has its generic name, repotrectinib, but I fell in love with it when it was just TPX, so it will always be TPX to me). The nearest site for this trial is at the University of Colorado, a powerhouse for ROS1 research. My longtime readers may recall that back in 2014 I took a trip there, my journey to Oz to meet the Wizards so that I could learn more about my newfound mutation. With all of this on my mind, I got up and starting figuring out how to stay alive. Actually, that�s not true. The first thing I did was get back in bed and get under t...

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married. Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it�s not really a family vacation. There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it. ...do you see where I am going with this? These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear. So we decided, come hell or high water, we are going to California! Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I�m well aware what a challenging time...

I am now 9 weeks post brain surgery on my cerebellum. And 1.5 weeks post targeted radiation to my cerebellum. And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain. Right now, we are in a very pleasant phase I am calling ... The Pause. I don�t have another doctor�s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects. I�ll take it. In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, ...

The good news is that my brain surgery recovery is coming along really well. I�ve even been approved to start driving again, so Jason is taking me out for some driving practice this weekend. However, life with metastatic lung cancer continues to keep me on my toes. I�ve been in seemingly endless doctor appointments, and the plan now is to do targeted radiation to the area surrounding what was removed from my cerebellum. I am also moving to a new targeted medicine, Lorlatinib. Hence, the endless doctor appointments. I had my penultimate appointment for the Entrectinib trial, and I am currently going through the washout period in preparation for the Expanded Access Protocol trial for Lorlatinib. As you may recall from my Crizotinib washout, the withdrawal from these powerful meds is remarkably painful. Every muscle in my body is aching, even muscles I didn�t know I had. On Monday I have the radiation planning appointment. There will be 5 radiation sessions, every other day, beginning the...

I made it home Saturday afternoon and am now slowly rebuilding my strength surrounded by my beloved family. The surgery went well and without complications. We won�t know for sure until we get the pathology report but the surgeon said the feel of the tumor led him to believe there is still live cancer in the section he removed, rather than all necrosis. So that�s a bummer, and may mean more targeted radiation to the area left behind. But we will cross that bridge when we come to it. This was one of the scarier hills I have tackled over my 5+ years with metastatic cancer. There is an awful calculus that patients go through, deciding what we would be willing to give up for more time on earth. What deficits will we accept for more days? What makes life worth living? What risks will we accept for the hope of another year? The amazing Jason stayed by my side at the hospital, sleeping (or attempting to sleep) in a non-reclining chair, which frankly doesn�t seem possible at all. But I dearly ...

I saw my surgeon on Monday and all systems are go for brain surgery on Thursday, October 4. I�m oscillating between being incredibly nervous and remarkably calm. Acute recovery will be anywhere from 2-5 days in the hospital, and he estimates 4-8 weeks of slowly rebuilding my strength. His calm demeanor is buoying my optimism; he kept saying this is straight forward and he doesn�t anticipate any problems. In the mean time, we have been trying to get everything ready at home, for the family, the kiddos, the business. I�ve been feeling a very literal need to get my house in order to prepare for this event. As a fairly behind-the-scenes person, I feel like most of what I do is make sure things keep moving smoothly - like a player in curling, rushing about sweeping a clear path for that granite stone to get where it needs to be. As the surgery nears and my to-do list gets shorter, the primary thing I need to do is hand over the reins to all the trusted members of my team. A strange and libe...