I flew on the good news of my scans to New Mexico. It was a memorable, exhausting week. We rode the rapids, we rode on horseback, we hiked, and to cap it off, we immersed ourselves in art.
It was hard to come back, and not only because our flight deposited us at midnight at LaGuardia Airport, which is hell on earth these days due to construction. It was hard to say goodbye to a fantastical volcanic landscape we’d fallen quickly in love with, to delicious spicy food, to sunshine without humidity.
Also, hard to return because it’s the time of year that everything overturns, for us and for the kids. There are less than two weeks left in the school year. The kids sense this and they start freaking out right about now. Not only restless energy, although there is that. There is also the fear of the unknowns of summer, magnified this year because they are both leaving home for the first time: Young J for a whole month, Young A for two weeks. They’ll be at the same place, which I’d like to think will be a comfort, but the way they’ve been lashing out at each other lately, it’s hard to be sure. What if Young A is in the throes of homesickness and goes for a hug and Young J refuses? (Actually, their dynamic tells me the opposite is more likely.) I can’t possibly control things like that, but I’m allowing myself to be heartbroken in advance if it does come to pass. (And I’ll be much relieved when it doesn’t.)
I have some work, so that should hopefully keep me occupied and out of trouble while the kids are away. J and I may take a short trip, but we haven’t yet made any plans. The task of acquiring and labeling 20 pairs of underwear and socks each for the boys is too daunting for me to think beyond it.
But the last label will get slapped on the last pair of underpants, the suitcases will get zipped up, and the boys will occupy a space separate from us for a time that will probably feel simultaneously endless, and not quite long enough. Just like our recent vacation. Just like life — whether it is allowed a dénouement at a typical pace, or whether it slips by more quickly, like those last grains of sand in the hourglass, getting pulled through in a hurry.
One last shameless plug for our cancer immunotherapy fundraiser: the walk is this weekend. We’d love your support. Thank you.
I'll Live 
You are all going to be amazing! And I’m pretty sure your quick trip should be to Vermont.
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HI I’ll Live,
Its great to hear that your scans came beck GREAT. Mine did not. I had PET/CT last week and one of my lung tumors had grown 4 times since last Nov. Several have grown slightly. The prominent one was 1.5 cm then and now is over 4 cm with a luminosity of 10. This is during and after 4 rounds of yervoy/opdivo. My doctor has cut me off of any further immune treatments. He and his associates are looking for alternatives, none of which look good or promising to me. Since you had such a violent reaction to the treatment what maintenance have you been on? In my case I had a rash after the 1st treatment; it was treated with 10mg prednasone and then fever after the second round treated with 20 to 40mg. I have been on 20mg ever since. I started weening myself off two weeks ago and now have stopped. The problem is my rash is back and I’m running a low grade fever. The other interesting thing is, the age spots on my arms and hands are disappearing. There are several spots that have blistered. So to me it seems that I’m still having an immune response. I’ll talk to my doctor next next week and see what he thinks.
The photos of New Mexico are great. My friend Sally and I are thinking about a road trip this Summer. We are in Louisiana and would probably get on I-10 and go West. I have never been West past Texas. Again beautiful photos.
JA
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Hi Lynn, nice to meet you! I’m sorry to hear your scan results weren’t great. I hope you will find another treatment plan that will work for you. My lung mets were treated with ipi back in Sept-Oct 2014 so I’m not sure if the ipi/nivo combo was in wide use then. In any case, I had only ipi (plus some radiation to the lung as part of a research study) and even though I had to stop treatment after two of the four doses of ipi (due to colitis), it seems to have worked.
So interesting about the age spots! This disease truly is so individual, and so, it seems, are the effects of treatment.
A road trip to NM sounds amazing! I guess you’d be seeing a LOT of Texas on the way. Northern New Mexico was where we focused our trip, since we only had a week.
Wishing you a good new treatment plan and good health!
Deborah
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