Timing is Everything

 

But first, my dragon-slayer friend, Stuart Scott, would have been 54 on July 19. Every year since cancer took him away from us, his amazing daughters, Taelor and Sydni, mark his birthday with #scoopsforstu. Countless people post photos of themselves eating ice cream, keeping Stu’s warrior spirit alive. As I move forward, when the path is easy and when it’s hard, I take many moments to remember how hard my friend fought. He is still my hero, and I miss him every day. I’ve not missed a ScoopsforStu day yet. This year, mint chocolate chip at Rocky Mountain Chocolate Factory.

The 17 days since my last post blew by. I filled my days connecting with friends, actually getting in to a routine of working out, going to the farmers’ market, taking the Vespa everywhere I could. I felt a little better every day physically, which improved my outlook. After feeling awful repeatedly through this journey, I appreciate days where I just don’t feel bad. Days that I feel pretty good are celebrated, even if only in my head. I don’t, however, project how good I might eventually feel or how long this upward spiral of improvement will go because, well, there’s not much I can do about it. I work very hard to not try to control outcomes. More on that later.

Speaking of having no control (and therefore no worries) of outcomes, I had my first real CT scan in a long time four days ago. I’ve now been off any kind of cancer fighting meds for nearly two months. I’m still breathing better, sleeping without oxygen, but I have  near constant ache that sometimes turns into pain around my left ribs. It often wakes me up at night. I told Dr Akerley it feels like there’s a band around my ribs and lungs, making it so they can’t expand fully and give me full breaths. He said there IS a band of tumors around my lungs, making it so they can’t expand fully and allow me full breaths. So there’s that. I also have a bit of my cough back, although I’m choosing to blame that on so many things blooming around Park City. And I can neither fall asleep nor stay asleep at night, after a couple of months of Prednisone. I’m stepping down doses, but the insomnia is getting worse. It laughs in the faces of CBD, THC, cough syrup with codeine, and reruns on the Food Network. My Huntsman docs extended my step down, too, fearing that my original plan to stop taking Prednisone would make me feel terrible. I figure I’ll sleep some time in August.

The CT scan is my first real one because my last few have been emergencies, following hospital admissions for pneumonia. They were also for chest only. This one was for chest and abdomen, which I apparently haven’t had for years. There was a bit of discrepancy between Dr Akerley and the radiologist over potential disease spread into my diaphragm, but both Dr Akerley and Dr Rajan agree now that there is no spread of disease.

Great news. But now what? I’ve been wondering about this for a few weeks. I’ve checked out possibilities for trials on http://www.clinicaltrials.gov

and did a little (very little) research on possible standard chemo (HORRORS!) . I explored the possibility of more proton therapy. None of these were good options. I had also decided that if my CT scan was a good one, I’d like to extend my drug sabbatical (Dr Rajan calls it a holiday, which I like) and treat this one tumor on the outside of my left ribs. It’s about the size of  a walnut. The size and location of it is making the aching on my left side worse. I’m back on the 600 mgs of Advil a day. If the Prednisone doesn’t wake me up at night, the ribs will. I think it’s also making it easier for my coughing to crack ribs on that side. No bueno all the way around.

I told Dr Akerley I wanted to keep holding the next systemic treatment (which is NOT going to be Afinitor/Everolimus, by the way) for some kind of radiation to that tumor, and guess what happened. A new treatment option materialized. Dr Akerley is the lead investigator on two trials that use interlesional (read: injected straight into the tumor) drug delivery. One is an experimental drug, the other is an experimental drug plus an immunotherapy. That one has a systemic component, so if it works locally, I could take it in an IV, if I am interpreting it correctly. That one is full now, bur should get more spots at the end of August, when I’m back from traveling. It’s also based at Huntsman in Salt Lake, so I would continue to not build up my Delta Diamond Status for next year. I am a candidate for both because I have a tumor that can be seen on the outside of my body. It is an unbelievable stroke of good luck or good something… timing for sure. I’m all for being incredibly proactive in your own health care, but sometimes, when you don’t try to control what’s next and just throw it out there into the universe, there is serendipity. Dr Rajan thinks the CT analysis and both trials are good options. We are all on the same page. That doesn’t happen much. I think I’ll go to Alaska.

 

 

 

 

 

 

 

 

 

This is the Alaskan cruise that my brother, sister in law, and I are giving to the Admiral for his 80th birthday. 80!!! And he’s the one who has to wait for ME when traipsing up a hill. I actually don’t traipse any more. It’s more of a hypoxic shuffle, but getting better. First, Al, Sheryl, the Admiral, Pally, and ALL my nieces and nephews (I don’t know how my brother pulls that off repeatedly. I’m in awe) met for a couple of days in Vancouver. I love Vancouver, and the weather was perfect. One of my favorite spots is the aquarium, so we spent a morning there and at Stanley Park.

 

 

 

 

 

 

 

 

 

 

Now, we are on the ship and steaming toward our first port, Ketchikan. We’re having a nice cruisy cruise day of yoga, food, Pilates, food, cupcake decorating, food, reading and more food.

 

 

 

 

 

 

 

 

 

 

I am in the most amazing place to celebrate a new Yellow Brick Road. People I love all around me, Traveling to a place I loved but haven’t been to in a couple of decades. Feeling almost normal, and with a plan that I didn’t have a week ago. I know anything can happen. I know that this Road still may not be the one I follow for a myriad of reasons, the biggest being I’m not accepted into either trial yet. But that’s not mine to manage. And definitely not this week. This week is for spotting Bald Eagles and whales and hopefully bears. And for overeating and catching up on sleep and maybe making some money in the casino. PLUS, when the cruise ends, I fly to Columbus for my fifth Pelotonia to help fund and celebrate cancer clinical trials. This, as I enter (hopefully) the 6th clinical trial of my life. The timing of all of it is remarkable. I am filled with gratitude. And always, #defiance.