Tuesday, November 20, 2012

Remission Test Results

My PCR remission test came back clean! I've now been in remission for one year! So I guess that makes this my first "cancerversary."

We have much to be thankful for this Thanksgiving.

To my friends, your kindness and loyalty has awed me. Thank you for all you've done for my family.

To my family, I love you so much, and look forward to all of the special moments to come. Katelyn, you've brought me so much joy, when I've needed it most. Ryan, you've been my rock. My parents, your love and support shines through on the brightest of days and darkest of nights. To Jen, Jeff, Matt, and my extended family, I love you all and appreciate your continued support of not only me, but Mom and Dad too. I've got an amazing family.

Life is a beach.

Wednesday, November 7, 2012

ATRA Round 5, Day 1

So I'm beginning this 15 day round a little more out of sorts than usual. After eight days of no power, the lights in our house just went on last night. It's been a stressful past week, both at home and with the commute situation, but since others on the coast are in much worse shape I can't complain.

We had a Dr. Goldberg appointment on Monday, at which my blood was drawn for the PCR test that will tell us if I've been in remission for one year. We discussed with him my ongoing issues with pain/nausea management during the ATRA. This round, we're going to see if it works better for Ryan to take me to the cancer center to receive intravenous drugs for relief during the hardest days.

It's snowing right now. The nor'easter has arrived. Hopefully we don't lose power again. 

Friday, November 2, 2012

Superstorm Sandy Update

As one of our close friends, whose parents lost their home in Howard Beach, Queens, described the aftermath, "It's much worse in person than anything you see on television." People are struggling, and frustrated. The power, commute, and gasoline situations are tough, but the towns who were hit by the surge waters are in far worse condition. Our thoughts and prayers are with them, and with our good friend's family.

In our town, which is a bit inland and elevated, the wind was the only culprit of major damage. Below is a home, on a nearby street, hit by a fallen tree. 

We will be without power (and heat) until  an estimated November 9th. Conveniently the nearby mall and movie theater have power, so Frankenweenie has been crossed off the list, and tonight Hotel Transylvania will be as well (at this point, the bar for entertainment/warmth is very low). Today Ryan aided Katelyn in Building a *Hurricane* Bear, which she named Sandy. If we can find a way to get them to the displaced children, perhaps we will return to the mall this weekend and have her build a few more.

Thursday, November 1, 2012

Being a Bald Mamma or Daddy

A good friend of mine recently asked me for some ideas for her friend, who is beginning chemo shortly and has two young children. Her friend is hoping to ease the adjustment  for her children when she loses her hair. This mom is in my thoughts and prayers. I wish her and her family the best.

Regarding being a bald mamma, in my experience, it's not easy at first. But hugs and love feel no different to a child when they come from a parent who suddenly doesn't have hair. Quickly, she will realize you are the same person, despite the different appearance.
Katelyn's and my first day together post my hospital stay
(and her first day with a bald mama)

After returning from the hospital, I removed my hat for the first time in front of Katelyn. She asked me in her simple sentence fragments to put it back on. And then to take it off again. We repeated this several times, and my mom noted that Katelyn was probably hoping the next time I removed my hat, my hair would be back. My daughter's disapproval, expressed by physically distancing herself from me, was not easy for me to bare. Albeit, her reaction might have been less severe if she'd seen me more than a collective two hours over the prior 40 days. Regardless, her initial reaction quickly faded. 

Only a few weeks later, Katelyn had become so accustomed to my bald head that when I tried on a wig that matched my former blond hairstyle, she shirked away from me. I immediately took it off, and never wore it around her again. In fact, I never wore it at all. Katelyn liked her mommy bald, and that's who I am-- Katelyn's mommy.

As my hair began to grow back, one of her routine ways of showing affection was to pat the top of my head and say, "Hair growing back." Because hair grows so slowly, there's been no need for her to adjust to my appearance changing back to the "normal me." Now, when I show her pictures of me when I was bald, she doesn't associate the person in the pic with the mommy holding her. This is comforting. As a family, we are healing, and moving forward.

Below are a few ideas from a former bald mamma for easing the adjustment for children: