The Best Day Ever (Cancer or No Cancer)

Just wrapping up the best day ever. This second chemo cycle has been EONS better than the first. I was still pretty laid up the first week with nausea and fatigue, didn’t leave the couch much, but even so, it was less all-consuming-debilitating than the first go around—evidenced, for example, by the fact that I could tolerate TV watching and book reading (last time both only made my nausea worse), and by the fact that I actually started to get stir crazy a week in (last time I felt too putrid to feel anything other than putrid until almost two weeks in).

Today I woke up and went for a VERY SLOW but nonetheless RUN with Josh in the first sun we’ve had here for days. Then I ate a full bagel-with-the-works brunch followed by some good ol’ Monopoly (no surprise, Harrison negotiated us out of our properties and took us for our money, too). IMG_0283After the appropriate amount of said lounging around the house, we ventured out, and the kids helped me pick out a very fun, very purple wig; and then Harrison and I chopped IMG_0063down a Christmas tree (with Sophie, Amma and Zayde—aka my mom and dad—in tow). The only way the day would have been more perfect would have been if Josh had been with us instead of studying away. (Josh graduates in May 2015 from his very time- brain-energy-consuming physician assistant graduate program.)

But wait, there’s more. Then we rescued Josh from his books for a tree-decorating, cheese-and-cracker-eating, dance party. Hard to say whether my highlight was twirling around the living room with Harrison and Sophie (and you, dad!); or lIMG_0096aughing with them as we tried on pink and green wigs; or running with them through the fields of Christmas trees; or sitting around the dinner table just a bit ago with my parents and my smiling, happy children, and my love Josh, talking about what a great day itwas and knowing there are more to come, whether it be tomorrow or next month or next year.

(The bad news is that I have terrible mouth sores, a new symptom that developed a few days ago. The good news is that chemo #3 isn’t until Thursday, so mouth sores aside, I am looking forward to a few more days of feeling more physically able.)

Here Is My Village. Here Is My Gratitude.

For the last hour, since Josh left at 5:30 a.m., I’ve been lying in bed trying to compose a thank you to my incredible, life-supporting, soul-nurturing community of friends and family. Such a feat might prove impossible because the list is so long and varied and awe-inspiring that my fear of inadvertently leaving just one person off of the list might out-weigh my deep desire to mention every single individual by name. Let’s see what happens…

The “composing in my head” started because I was thinking about this afternoon, post-chemo, which got me thinking about my Dear Maggie, who is coming straight IMG_0507from work to spend the afternoon and evening with me, until Josh comes home from work, whenever that happens to be. Maggie who has filled every nook and gap on our “needs list” like only a sister (or mother or spouse—and only a particularly wonderful sister or mother or spouse at that) would do. She calls me no fewer than three times a day. Swoops up my kids at a moment’s notice; drops off prescriptions; shuttles me about; creates gifts to be opened during chemo (the latest a bag with enough individually wrapped goodies for me to open one, every half hour over the course of treatment); and does no doubt endless hours of behind-the-scenes work, from managing the site to coordinating support via phone and email to updating out of town family to navigating the dozens and dozens of emails she finds herself cc-ed on because of her integral role in my family and care. I wrote of godsends recently and have found no better word as of yet to describe people like Maggie.

People like many of you who are reading my posts. Thank you. Thank you to:

Annie, for traveling here from the Catskills, twice, to take care of my family and me in the days following chemo (or in the case of this week, to spend some quality leisure time with me in the days following not-chemo!).

Joe, Andrea and John, for, between the three of you, driving more than ten hours to transport Annie (who has chronic back pain and can’t drive long distances) between Hunter Mountain and our house.

Nunia, for taking me to chemo today.

Jen Bernache, for taking me to almost-chemo on Monday.

Keegan, for dropping everything at a moment’s notice, more than once, and giving up an hour here, an afternoon there to take me to last minute appointments.

Barry for driving me to yet more appointments, dropping off scripts and generally being on call for just about anything, anytime.

IMG_0509Jenae, for coming up from Brooklyn tonight to take care of me through the first several days of this next treatment. For checking in on me constantly, constantly. For being, even from afar, one of the first go-to people on my short list.

Clover, for “saving my life” :)) by 1) taking my kids for their flu shots; 2) arguing with the staff until they agreed to let you, a non-family member, give your consent for said shots; and 3) stopping the nurse just in time from giving the mist—and thereby protecting my chemo-suppressed immune system from live viruses!

Clover, Jen Bernache, Cara, Renee, Emily and Phil, Michele, Maggie and Barry, Andrea and John, Laura and Josh, Nuni and Silver, Molly and Mosie, Hannah and Greg, Eric: for inviting my kids to be carefree, happy kids in your care, entertaining them for hours on end (and letting me be miserable in peace).

Jeff and Tala, Sarah Buttenweiser, Shawn, for grocery shopping for my family.

Cathy, Tricia and Tonja, Tala and Jeff, Clover, Janet and Mark, Kerry, Jen Reed, Mary Bates, Noel, Jain, Elanit, for dropping off delicious, nutritious food and seriously cutting down on the dinner-time stress.

Jain, for being so on it from the start, doing what had to be done to get me seen, and hence treated, asap. For all the visits and check-ins and the super cozy hand-knitted hat, too.

Karen, for sharing your personal experience and wisdom and books and head wraps and walking company.

Ms. Jenny Jen and Mary Ellen Reed, Michele, Keegan for taking my kids to school.

Tricia, for picking up my folks in Springfield and delivering them on my doorstep.

Aimee, for leaving your own family and driving up from New Jersey this weekend to take care of all of us until my folks arrive on Tuesday.

Julie and Debbie, for all your help navigating doctors and second opinions and treatment recommendations.

Terry, for taking such good care of my mom while she’s in Northampton, so she can continue to take such great care of me.

Marsha, for taking such good care of me.

Cousin Brian, for offering to leave your own family two hours away to be with my children after school.

Nancy, for signing up to pick up my kids, whom you don’t even know, to love and feed and distract them at your house.

Shawn, Angela, Elanit, Amanda and Eliza, Kai, Jeff, Mike, Cousin Stephanie, Cousin Caroline, Aimee, Joe, Ginny, Cathy and Josh, Amy, mom’s friend Michelle, Kathleen, Cory, Lucy, Julia, Katherine, Betsy, Bri Guy and Rachel, Norma, Mark and Nancy, Aunt Rie, Uncle Stirlin and Aunt Beth, Aunt Christine, Aunt Jackie, Aunt Marjorie, Davood, Peter, Jodi, Mica, Ellen Obradovic, Jo, Ann, Louise, Dina, Connie, Taije, Jason, Jannell, Jared, Rosie, Megan for sending one or more of the following: gifts, hand-written letters, repeated phone calls, inspiring emails, such love from near and far.

Margot, Mary, Jenae, for getting in your car and driving up from Brooklyn as soon as I gave the okay. And for secretly pasting photos and notes to be revealed over time when I open a cabinet door, the toilet seat (ha!), a closet. For being on the ready to walk me through questions for the docs; debrief information; talk me through hard decisions. And for making me laugh, so much, all the time. Such good medicine. Also, for the box from Amazon filled with YA novels and the stack of trashy magazines to help me pass the time.

Ellen, Kim, Gwen and Sarah for taking extra special care of my babies at Jackson Street, making them feel safe and loved and heard and thereby making me feel that much more at ease about my children’s well-being during this complicated time.

IMG_0265Mama and Poppy, for doing everything I would want to do for Harrison and Sophie if they ever found themselves in a similar situation. For making it possible for me to take a leave from work. For putting your West Coast lives in order so you can have an East Coast life for an indefinite period of time. Really, there are no words, but I think you can feel my heart and all its gratitude for both of you.

Josh, for doing everything, everything, every thing you could possibly do to support me. For singing “You are so beautiful” while you shaved my head. For IMG_0501telling me how strong I am and how proud you are of me. For washing and cooking and taking over the dreaded bedtime hour and changing the sheets and rubbing my neck and packing lunches and coming to all of my important appointments and refusing to sleep in the other room when you have to get up in four hours to be VERY ON and my restless discomfort is keeping you from sleep, but you still won’t switch beds because you don’t want to leave me. Thank you for all of that, my love, plus the 374 other wonderful things you say and do every week for me and the kids and our family.

I will no doubt wake up in a cold sweat in the middle of the night when I remember ten more people I wished I had thanked. Please do not take it personally, especially since, at this point, my brain is fully wonky from the drugs.

Everything happens for a reason

Image 3I ran three miles on Tuesday and Wednesday mornings! And then crashed and took not one but two mini-naps. But still, felt—feels—amazing to know I might get through this without every single muscle in my body atrophying. Prior to Monday, when I dipped my toe back into the “active” waters by walking my kids to school then home again (a whopping 1 mile roundtrip), the most exercise I’d gotten in over two weeks was a 12 minute, snail’s-paced walk that took everything out of me. A far cry from the 6-8 mile runs I was doing prior to chemo, so I was a little worried. And then a lot relieved after my runs this week to think I might actually feel like a “real” person who can do “real” things here and there over the next five months.

So there I have it, tangible “everything happens for a reason” evidence that not getting chemo on Monday was a good thing in the end.

They refused me my second chemotherapy infusion, and it nearly undid me.

Last week (eight days after my first chemo infusion), I went back to my oncologist’s office with what turned out to be a one hundred and two degree fever, strep throat, and severe conjunctivitis. (The joys of a chemo-suppressed immune system.) Today, I went for my second infusion, and because I still showed signs of infection, they refused to administer the chemo drug. It’s been quite hard for me to roll with the change.

In general, I continue to feel this unexpected Zen-ness about my situation. I continue to feel steady and strong (emotionally), and proud of how steady and strong I feel, and not resistant to what is. But this, today, not getting chemo, this little disruption in life’s plans—so much more insignificant than the bigger disruption of having cancer in the first place—this is my undoing! This is what makes me want to rage and cry and shout, “But it isn’t fair!”

My dear friend David pointed out to me some years back that I am quick to get over things. (Thank you, David, for highlighting this strength of mine, a nice counterbalance to the emotional outbursts that precede the “getting over.”) Today’s fistful of rage lasted a bit longer than usual—for all three of the hours that I spent at the Cancer Center (amazing how much time it takes to NOT have chemo). But I have now gotten over this, as well. I am now welcoming a few more days of feeling the best I’ve felt since I started treatment, and I am trusting, once again, that everything happens for a reason.