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Monday, November 30, 2015

Happy Thanksgiving! A lot of things were going on this year. One was that we were hosting Thanksgiving for the first time ever! We were pretty clueless but kept it SIMPLE SIMPLE SIMPLE. Kevin focused on the turkey and I made a lot of not-so-much-from-scratch sides. Okay, you gotta walk before you run, okay? We missed Kevin's family this year, but we drank mimosas in their honor.

Our Thanksgiving party in front of Mad Men fireplace.

Another thing was that we recently hit the 5-year anniversary of my dad passing from renal cell (kidney) cancer. So that was... weird. To describe it in some inexact language, it feels less like being stabbed in the heart repeatedly now, and more like a dull ache punctuated by sadness when I want to tell him something, or wish he could see the kids. I think I might have repressed how I felt this year, and it backlashed, especially since I sort of associate it with Thanksgiving.

But also, this year there is the gratitude that we're together. As I wrote about on the blog, in August 2013, my mother was diagnosed with renal cell carcinoma, the same kind of kidney cancer my dad had. It was contained in the kidney, so she had surgery in October 2013, to remove the kidney. But not on the blog previously-- in February of this year she found out the cancer had returned. This time she couldn't have surgery, because the tumors are just on blood vessels. And as we already knew because of my dad, chemo and radiation does not work on kidney cancer. She went on two different studies this year and ended up trying Sutent (the control drug), and Inlyta + Dalantercept, but neither helped. In September, they put her on a IV drug combo of Torisel and Avastin. Her November scan showed no progression and some shrinking of the tumors! Just as important, she has much milder side effects on this last drug combo so she can actually enjoy herself, and does. So I'm thankful we're together, and thankful that she feels well, and most of all thankful that she knows how to enjoy life.

Saturday, November 28, 2015

As most of you know, week after I found out I was pregnant with Miranda in August 2013, my mother was diagnosed with renal cell carcinoma, the same kind of kidney cancer my dad had, which was horrific and shocking. It was Stage I or II because it was contained in the kidney, though it's measurement and other factors put it in between Stage I and II. She had surgery at Valley Hospital in October 2013, to remove her affected kidney and tumor. I encouraged her to get a more hardcore oncologist after that and she started seeing Dr. Alter at Hackensack hospital. She had regular blood tests and scans to make sure the cancer wasn't back.

Things were okay for a while. She had normal follow-up scans in June 2014.

In January 2015 CT-scans showed that her cancer had returned. She numerous spots and one large tumor where her kidney used to be. She found out on February 16th, and shortly thereafter had MRIs on her pelvis. She had a biopsy of the large tumor on March 4 to confirm that it was kidney cancer and before proceeding with treatment.

On March 11, we met with her oncologist to discuss treatment options.
The tumors she has cannot be surgically removed because they are on blood vessels. Surgery would be very dangerous, and probably not effective given the number of tumors.
Chemo and radiation typically do not work on kidney cancer. Sometimes if they're desperate enough they will use some form of targeted radiation, but as I experienced with my dad, this largely just resulted in more pain and no improvements.

She agreed to go on a randomized phase II trial studies how well cabozantinib-s-malate (Cabometryx) works compared to sunitinib malate (Sutent) in treating patients with previously untreated kidney cancer that has spread to nearby areas or other parts of the body. We were hoping for the Cabo but she got assigned Sutent. Sunitinib is a protein kinase inhibitor. Protein kinase is a type of chemical messenger (enzyme) that plays a part in the growth of cancer cells. Sunitinib blocks the protein kinase to stop the cancer growing. It can stop the growth of a tumour or shrink it down. Sutent didn't work for my mom. She also had really bad side effects.

In mid-June, Phase II study of axitinib (Inlyta), an FDA approved drug, + Dalantercept, not yet FDA approved/ or placebo. She had really bad side effects from the treatment. Axitinib is a tyrosine kinase inhibitor, which blocks certain proteins, tyrosine kinases, that signal to cancer cells to grow.
Axitinib blocks different types of tyrosine kinase and is called a multi kinase inhibitor. It stops cancer cells forming blood vessels, which the cancer needs in order to grow. This is called anti-angiogenesis treatment. It's an "activin receptor-like kinase 1 inhibitor," whatever that means. I'm not sure if she got Dalantercept in the study or not.

In September, they put her on a IV drug combo of temsirolimus (Torisel) and bevacizumab (Avastin). Temsirolimus is an mTOR inhibitor. It blocks the effects of a protein called mTOR, often over active in cancer cells that makes the cells divide and grow. Temsirolimus is also an anti-angiogenesis drug. Bevacizumab is a different kind of anti-angiogenesis treatment that targets a cancer cell protein called vascular endothelial growth factor (VEGF, which helps cancers grow blood vessels).

She had mild side effects compared to her reactions to other drug combos, but you know, still not fun. Her November scan showed no progression and some shrinking of the tumors!

Friday, November 27, 2015

Kevin and Pete went back to Wellspring House, a writers' retreat, last weekend to work on their writing. Kevin has been working on his novel. For a long time. If you're desperate to know more, a small chapter "Brendan and the D" was published in the Natural Review, a literary journal in the Fall 2011 issue. But you'd have to get your hands on a physical copy to read it. (I blogged about it here if you want a tiny peek.)

Thursday, November 26, 2015

Jane and Rob had a beautiful son, Wesley last week! We didn't even know she was pregnant! Two children is more than twice the fun because seeing them love each other is so amazing! Congratulations Jane, Rob, and Luke!

Saturday, November 21, 2015

Today, let's be thankful for the all the cuteness. James's school had a Thanksgiving Feast and even though it was on a day he doesn't usually attend, they welcomed him to join in so that everyone could be there.

Wednesday, November 18, 2015

Back in October, Sarah, Lukas, Lio, Cory, and Robin were going to come visit us at our new house, but James and I were each sick for two terrible feverish weeks, for a total of a month... (James September 15-30, me from October 1-15) and we banned anyone from visiting and catching our evil virus. So we finally had a makeup date with Sarah, Lukas, and Lio.

Lio, Lukas and Sarah at Bareburger in Astoria

James probably had the best time of anyone because he loves Lukas and Sarah so much. Plus now he thinks Lio is his other sister. He also loves eating so his opportunity to have a second HUGE lunch at a restaurant was the best thing that ever happened to him. Seriously he ate more than me and Kevin combined that day.

The Clous in Astoria

Lio samples the menu... literally

After lunch we walked over to a nearby playground.

Look at these little city girls.

It was only a matter of time before Miranda had Lukas wrapped around her little finger...

Because Miranda said so that's why.

We had a lot of fun at the playground. Especially Sarah and I who see children as a great opportunity to be children again. I went down the slide as many times as Miranda did for sure, and possibly more than James and Lio.

James and Sarah having fun together

Siblings playing together

Because when your first baby is 6 months, you put her in the swing together

Wednesday, November 11, 2015

When we went to the Bronx Zoo in June, the animals the kids liked the best were the ducks. So we thought they would enjoy our local duck pond. We were right- it was a huge hit! The ducks came right over and we spent about 30 minutes just throwing bread to them. They even followed us around the pond when we changed locations.

Yay!! Feeding ducks!!

Kevin keeping his eye on the kids, not the ducks

Three happy ducks

I often take a lot of pictures of something we're doing and I get accused of not living in the moment. Well, Kevin had the camera for a while and I was fully immersed in the simple joy of feeding the ducks. And I really was watching to make sure the kids didn't fall into the pond, but while I was throwing some bread Miranda moved quickly and went down the slope. Kevin caught her before she went into the pond, but he was not amused. After that, we played one-on-one defense with the kids, and left as soon as the bread was exhausted.

Tuesday, November 10, 2015

Last year, Kevin applied for and won a grant for the Creative Writing Program at his university. The grant, the President’s Visiting Artists Series Award, is for bringing practicing artists to campus to work with students and faculty.

He brought Catherine Lacey, author of Nobody is Ever Missing, a Granta New Voice in 2014, awarded an artist’s fellowship from New York Foundation for the Arts in 2012, and has taught in the Creative Writing Program at Columbia University.

She gave a public talk on the craft of writing on Wednesday. Throughout the week she hosted fiction and creative non-fiction workshops with undergraduates at Stony Brook, and MFA candidates in Southampton. But most fun for me, I got to go to dinner with her on Monday night. Her book is awesome so it's no surprise that so is she.