Monday, February 04, 2013

My hair

My hair is my most defining feature. It is how I recognize myself and other's recognize me. That two foot fall of thick, brown, wavy hair was -- no snickers please -- my crowning glory. 

And I loved it. I didn't do much with it but I loved having long hair. I loved getting it brushed. I loved the compliments. I loved the way Joey would grab the ends as he would walk by. I loved Sabine's attempts to comb it. I loved the way Daria curled her hand into it at night when she couldn't sleep. I loved my hair. 

So, cancer. She's kind of ruthless with the whole tear you down so you can build back up thing. I needed to cut my hair before she took it. 

Friday before my first round of chemo, I went pixie. 

And it looked gorgeous! And I got to donate 22" of my hair to go to someone else who is not quite ready to show off their bald self. And a ton of our friends showed up to celebrate with us after. 

After round two of chemo, my hair started falling out in clumps. Time to go to the second layer. Again, it looks gorgeous. And, again, my friends and family were there to cheer me on. Joey, Ben, and Alyssa all joined in so there are a few extra bald heads around these parts right now. 

I loved my hair and I miss it. This new look, though, is pretty rocking. I can happily swing it for a little bit longer. 

Sunday, January 06, 2013

The c-word, redux

Or... Erin's turn.

A week before Christmas, I was diagnosed with breast cancer. I found a lump in late November and testing confirmed my fears. We cancelled our planned Christmas trip to Louisiana and spent the past two weeks trooping from test to doctor to test to doctor.

The great news is that it is not metastatic breast cancer. It is officially stage 3. (For those of you who like to geek out, it is ER+, PR-, HER2-Neu + and 6/9 on the tumor scale.) The primary disease is in my right breast. Since we can’t do this the easy way, there is additional, unrelated disease in my left breast. Genetic testing is still in the works but dang, it seems like there has got to be a genetic component to this.

Treatment for this is going to be utterly sucky. It looks like I will start chemo on January 16th. First up are four two-week cycles of the bad chemo (AC). Then I’ll have twelve one-week cycles of Taxol/Herceptin. Surgery and radiation will happen this summer after I get through the chemo.

The first round of chemo will have all of the expected side effects, including losing my hair. Before that happens, I plan to donate it to Locks of Love. It has been more than a decade since I cut all my hair off. If nothing else, it will be nice to have a different style for a few weeks.

Joey and I can’t believe we have to go through this again. It is totally unfair and deserves all the swear words we can throw at it. That said, we’re starting a few steps up because we have done this before.

What we learned last time is that we need all of you – your love, support, jokes, meals, calls, texts and offers of help. 

For the more tangible things, Joey and Katie have created a calendar on CaringBridge to be populated with meals, playdates, and other things as we think of them. The link is below, and it will be updated with chemo schedules and other requests for help as those things come up.

For the other, please know that we appreciate all calls, texts, fb posts and notes even if we don’t always reply in a timely fashion. 

I know that Joey, Sabine, Daria and I will survive – and maybe even thrive – through this next road bump. I so wish we didn't have to do this but we are certain we can... and I am definitely looking forward to another trip to Hawaii to celebrate the end of another cancer fight.

Sunday, April 08, 2012

Lots to talk about

The kids are getting so big! It is hard to describe all of the changes they are going through.
So, Sabine will walk us through the details.

Thursday, November 24, 2011

Thanksgiving Offerings

In a year that started with this...

And included this....

We have so much to be thankful for.

Our two tiny babies, who spent ten days and twenty-six days in the hospital respectively, have grown into happy, healthy almost eleven-month olds. While there are still moments of "OMG, we have twins," I can't imagine life without Sabine and Daria. They are a joy. My life is immeasurably better just because I get to be their mom.

The support of friends -- near and far, old and new -- made some of the lowest moments bearable and some of the best even better. We didn't have to feed ourselves for months because of your generosity. The drop-ins, calls, beers, emails, unexpected gifts, and facebook posts brightened many days. Thank you to all of you. (I am avoiding the Oscar-gaffe of listing names but we truly do appreciate all that you have done for us.)

Family is always there when you need them. Our family showed their true colors this year. The grandmothers were only a call and a drive/flight away. My dad answered many medical calls with patience and reassurance as we dealt with the unknown worlds of baby illnesses and cancer. My brother, sister and their partners were here whenever we needed them, including babysitting and emergency calls in the night and even mopping up a flooded basement. Distant family was here too, providing a pick-up for Joey on bad days and extra laughs on good ones. We love all of you and are so blessed to have you in our lives.

As I watch my friends face the passing of beloved parents, I am also truly thankful that all of our parents and in-laws are alive and healthy. I say it is because I want my children to know their grandparents, but it is much more selfish than that. I cherish all six of you and want you here for my sake... even if the grandkids are now first in your hearts.

I am thankful for heat and excellent health insurance and the various grown-up things that provide stability. We are in the 99% but we do not have to worry about food, heat, shelter, or access to top-notch health care. In a year full of craziness, this is more valuable than I ever realized. We are so lucky.

Most, though, I am thankful that my time with Joey will be measured in decades. When he was first diagnosed, I told him that five years was not enough time together. I would feel cheated even at twenty-five. He is my beloved. I am so very, very happy that his cancer is in remission and our life as a family will not be cut short.

Life has returned to normal -- small frustrations and all -- and I am grateful for every moment of it. Thanks to all of you for helping us survive 2011. You had our back.

Saturday, September 03, 2011

We made it to 8 months!

Sabine and Daria are now 8 months old. They are totally awesome. Both girls have their own distinct ways of approaching the world. It makes life around here quite interesting.

Daria is in constant motion. She has no off switch. She can crawl quite quickly for short distances. She gets her feet all tangled up, distracting her nicely, when she attempts the longer distances. As soon as she figures out that it is better to crawl (and stand) with one's feet uncrossed, the house will be hers. As it is, nothing is safe from her curious fingers, and mouth, as she tries to figure out how everything works. If she doesn't get it the first time, she will keep at it until she does.

Sabine is our chatterbox. Once she gets going, you can hear her throughout the house. Where Daria succeeds through sheer persistence, Sabine is much more likely to watch until she figures out how to do whatever it is she wants to do. She is not very mobile yet. There seems to be little around her that deserves the effort. She takes a totally cute wiggle worm approach when she does need to get somewhere. It is not efficient but it works. Sabine is also our cuddler and an unabashed mama's girl. Daria will snuggle until something else catches her attention; Sabine is there for the snuggle first. She and her Grandpa Bear have been quite content to cuddle in the rocker for hours.

Joey is finally feeling like a normal person. July and August were rough months. He never really recuperated from the fifth round of chemo, so round six hit him really hard. About six weeks after rocking a half-marathon, he had to spend a weekend in the hospital due to infection concerns. He ended up being fine, but the last round of chemo made us realize how lucky we had been up until then. Joey will go in for a final round of testing towards the end of September. I think the news will be good, but the waiting is hard.

We were incredibly blessed to have such great help from the day the girls arrived throughout this whole cancer thing. I can't imagine how we would have done it without grandparents, aunts, uncles, friends, and coworkers. Thank you to all of you.


Tuesday, August 02, 2011

The light is at the end of the tunnel

It has been a difficult several months. Twins are hard enough work, but to have a Lymphoma diagnosis 2 months into that adventure really added an extra challenge. But, we are almost through it.

July 28 was the final scheduled regimen (6 of 6) of R-CHOP chemotherapy, and I've been feeling almost not terrible. The light really is at the end of our tunnel and we are starting to say things like "when this is over..." and "I can't wait until we can do such-and-such again."

The girls are super as ever. They are eating solid food, sitting up, and beginning to understand crawling. Below is their monthly "photo on the calendar" which shocks me month to month, but for a real jaw-dropper check out six months ago!

Tuesday, July 12, 2011

July - 6 months!

025, originally uploaded by oeyjay.

This month's calendar photo is a little late, but with the summer holidays, etc it is hard to hit the date right every time.

Six month have flown by and the kids are getting so big as you can see. If you follow the links over to Flickr, you can also see the girl's first foray into solid food (oatmeal).

Otherwise, things are great and they bring joy to our lives daily.