Cord Blood Banking

As I'm writing this, I actually have tears rolling down my checks that are splashing on my legs.

For a long time, I was under the assumption that I would not be able to bank this baby's cord blood. I'd thought the stems cells were tainted by my potentially still leukemic blood. Yesterday I decided to look into the possibility once more before writing it off. I'm glad I did.

It took a lot of digging and several phone calls to determine that yes, the baby's cord blood is safe, since there is a separation of those cells from my cells. The baby's stem cells have no history in common with my blood. There may be other maternal diseases that rule out a collection, but at least for leukemia, it is safe. So that was great news.

In doing my research, I came across a notice for a program at one of the major family cord blood banks (CBR) called the Newborn Possibilities Program. CBR offers free cord blood and tissue banking (including the pricey fee for processing the cells, shipping, and the first five years of storage) for anyone who has an immediate family member need for stem cells. The treatment for a relapse of leukemia is a stem cell transplant, so that means I qualify.

I spoke to a genetic counselor, who confirmed I qualify and enrolled me in the program. I'm so thrilled the tears won't stop. Within an hour, I found out both that 1) we can actually bank this cord blood, providing me with an insurance policy, and 2) that due to the generosity of CBR, that insurance policy, worth thousands of dollars, will be free.

If we don't use the cord blood within five years (by which point I will be considered cured, knock on wood), we can choose to continue storing the cells by paying the annual storage fee (but we won't have to reimburse CBR for any of the original hefty processing fee).

Both the medical advancements and the generosity of this company take my breath away. Or maybe that shortness of breath is actually being caused by the little pair of legs pressing against my lungs right now..

Lightning, Ebola, Sharks, and Twenty Weeks Pregnant

Today, I thought about:

1) Lightning strikes (Did you know you shouldn't lie flat on the ground if you are caught outside in a thunderstorm?)

2) The "out of control" Ebola epidemic in West Africa

3) The 7.9 earthquake near Alaska

4) Great white sharks off the Jersey Shore (video of great white near boat)

5) Sun exposure and the risk of developing melanoma (five major sunburns between the ages of 10 and 15 can increase a child's melanoma risk by 80%)

After worrying about all five of these threats, it occurred to me that none are the actual source of my anxiety. I'm now twenty plus weeks pregnant. The last time, this is when I developed leukemia, and it's when it killed our baby.

Next week, we have the body scan ultrasound, at which last time we first learned our baby had died. As I'm typing, I can feel Baby Bean kicking. Yet I still don't want to go to the appointment next week.

Cancer patients often suffer from something coined, "scan-xiety." They may have a fear of or don't like getting test results, because the results might be bad. I'd never dreaded my quarterly blood draws for my PCR remission test. Yet during this pregnancy, I've found myself wanting nothing to do with doctors. Don't get me wrong: I have great doctors. It's just hard to shake a traumatic medical past. It's hard not to walk into my OB/GYN's office and not revisit what happened in 2011.

After everything goes fine at the ultrasound appointment next Wednesday, I think we'll start to feel like we're actually going to have a baby, that I'm going to be okay. We might actually start tossing around a few baby names, and discussing what it will be like to be a family of four. Until now, Rob and I have had an unspoken pact not to go there, not to jinx ourselves.

In the meantime, I'll be doing my best to focus on Baby Bean's kicks instead of lightning, Ebola, earthquakes, sharks, melanoma, or a leukemia relapse. Thump. I just felt another one.

Happy Mother's Day! (and some news)

Mother's Day seems like the perfect time to share our happy news. Three years after my diagnosis for acute promyeloytic leukemia, we are pleased to announce that God has blessed us once again.

Are we nervous? Yes. Have I been having flashbacks? Yes. Am I worried about relapse? Yes, but pregnancy doesn't increase my chances. Are we worried about side effects of the chemo? For the baby, no, since it's been shown there are none. For me, a little, since I have a risk of cardiomyopathy from the anthracyclines, and pregnancy puts more stress on the heart. But my EKG and echocardiogram were good, and I've got an awesome cardiologist.

Are we excited? YES. WE ARE THRILLED!

Because we are trying to move past cancer, and keep a positive mindset throughout this pregnancy, we've started a blog about the baby instead of writing about him/her here. It's called, From Poppy Seed to Pumpkin: A "Fresh" Perspective on Pregnancy. We hope you enjoy it (or at least find it amusing.)

Young Adult Cancer Survivors Conference: April 5, 2014

The Leukemia & Lymphoma Society is hosting a free conference for young adult cancer survivors and their support networks on Saturday, April 5. (We'd love to see you there!)

I love the theme. Young adults definitely travel in the fast lane, and a cancer diagnosis makes it very difficult to keep traveling at those same high speeds. My speech at the conference will be on this topic. Hopefully I'll think of a few good metaphors, like the time Rob and I were driving from WI to NYC, and I suddenly noticed that we were nearing Ann Arbor, Michigan...

Chocolate Cake Tasting Party

To thank all of our local friends for all the meals, help with with our daughter, rides to the hospital, and emotional support, Ryan and I hosted a chocolate cake tasting party in November. Why chocolate cake? Because each time I've had a good remission test result, we've celebrated with a piece, and the party happened to coincide with receiving the news that I'm still in remission. (Two years now, three to go until I'm considered cured.)

 

The party, with so many dear friends, was wonderful. The cakes delicious. Our only regret is that so many of those who helped us through this ordeal weren't local. (In retrospect, we should have FedEx'ed the leftovers!)

 

Below is a pictorial summary of the event:



We had five full-size cakes in the competition. Guests received a voting card, one side of which had room for notes, and the other side contained the voting ballet for the three categories- Best Looking, Best Taste, Best in Show. We decided to have guests cut their own pieces,

so that we wouldn't waste cake (throwing away chocolate cake is a crime!)

At the end of the evening, we handed out Chinese take-out containers,

so guests could take some of the extra cake home.

 

 

We displayed the cakes amongst white flower floral arrangements that contained chocolate roses,

which I had specially made from a chocolate shop.

The other decorations were brown and gold.

 

 

Each of the cakes in the competition had meaning to Rob and me. It was a blind taste testing, so after the ballots were turned in, we shared the below details with our friends:

 





"Death by Chocolate" from the A&P Supermarket bakery

Cost: $26

Our close friends, John and Vanessa, who were there for us through the daily grind of my hospital stay, recovery, and chemo treatments, introduced us to this cake for one of my first remission celebration moments.

The inside had layers of chocolate cake and fudge / chocolate frosting

Customized cake from Sugarflake Bakery in Wyckoff

Cost: $55 post $5 coupon

The theme of this cake matches the theme of my blog,

and the attitude my family has tried to maintain since my diagnosis.

The inside had layers of chocolate cake and pudding filling.

"Our Famous Turtle" from Cafe Latte in Minneapolis

Cost: $38, excluding shipping costs

When Rob and I were dating in Minneapolis, Cafe Latte was one of our favorite restaurants,

and we always ended the meal with a slice of this cake. Since then, my mother-in-law

brings us each a piece whenever she visits.

Rob's twin brother, Derek, shipped this cake to us for the party (thank you Derek!)

The layers contained chocolate fudge, caramel, and pecans.

 

 

Chocolate Rosettes, homemade by Mom

Cost: $18 for ingredients

It goes without saying that this entry was particularly special to me.

My mom made these same rosettes for my sister-in-law's bachelorette party, since Jen had a rose-themed wedding.

There was no fudging layering in these, and so were a big hit for the guests who favor a slightly less sweet dessert.

 

 

Seven-Layer Chocolate Cake from The Palm in Manhattan

Cost: $85

This was our favorite cake while living in NYC. In advance of our wedding, we took a slice of the cake on the plane and give it to the baker at our reception venue, with the request to model our wedding cake after it.

As the name suggests, the cake contained seven layers of chocolate cake and a fudgy/mouse filling.

The box it came in was from a place called Sweet Street Bakery, so if anyone not in NYC wants to try this cake, it can be ordered here: Sweet Street Bakery

 

And the winners are... but first, a few more pics:

My parents surprised me by flying in for the event, and helping out with all the prep work.

The sweetest treat of all!

 

 GORGEOUS roses from Bill and Emily, who couldn't make it to the party.

Thank you!!!

 

And a few of the voting cards:

 

 

And now, the winners:

More Magazine 2013 Beauty Search - On-line Article

The on-line version of the article and accompanying photo shoot pics can be viewed at:

2013 Beauty Search Winners

In the November edition on newsstands now, there's a "behind the scenes" photo montage from the photo shoot. I saw it while standing in line at BJ's on Sunday, while wearing faded yoga pants and no make-up. What a contrast!

This afternoon, I have my quarterly appointment with Dr. Goldberg at the John Theurer Cancer Center. It feels so great not to be starting another round of chemo this week!!!

Creative Writing Workshop Recap

The creative writing workshop, which I led at the John Theurer Cancer Center, went well. One of the "ground rules" for the group setting was that we keep the session confidential. This helps participants to feel safe and secure while sharing their work and emotions. So I won't be sharing my take on the session, but I was very pleased to find out that two of the participants gave the cancer center permission to post on its blog essays they wrote during the evening.

For the first experience, we taped print-outs of road signs on the walls and asked the group to free-write about their cancer journey as it relates to one or more of the signs. Two of the survivors' resulting work can be read at the links below:

Road Signs on My Journey Through Cancer

Signs

For the exercise, I chose to write about a falling rocks caution sign. My 10-minute free-write is below:

The mesh netting holds back the rock, jutting from the face of the cliffs, from falling onto the cars driving through the narrow passageway. In the dim light of the headlights, I can just make out the snow, capping the rock outcroppings of this mountain near Vail, Colorado. I'm afraid these boulders will fall, crushing our car. The sign warns it can happen, despite the metal latticework barriers. The mountainside will crumble, just as our car passes by it. Bad luck. That's all it will be. I should never have gotten leukemia. I should have given birth to a sweet girl named Lily Elizabeth on August 14, 2011. Her skin would have been soft, and pale. Thick dark hair, brushing my cheek as we snuggle. New baby smell. Instead, the chemical smell of the disinfectant soap in the bathroom of my solitary room at the hospital lingers in my nose. How can I trust that the rocks won't fall when they've already fallen once? If they hit our car, I will feel the crushing bone pain all over again, as bad as it had been after the Neupogen shots. Pain like my bones are breaking, like someone has shattered my knee caps. The probability of latent side effects from the treatments can't be that different from the chances of those rocks falling. But I cringe as we pass through the gap bored through the mountain, trying to make out the the mesh netting in the darkness. I'm so busy watching the rock walls that I'm not looking ahead, toward our family vacation. Nor am I listening to what my daughter is trying to tell me from her car seat in the back.

The last two lines of this free-write were a surprise revelation, and serve as a point I need to keep reminding myself of any time I get into one of my downward anxiety spirals. I went into the session viewing it as a way to help other survivors, and left the event surprised by how much I'd gotten out of it as well.

If you're going through a tough time in your life, trying searching on the web for road sign images, and spend ten minutes writing about one or more. You may also be surprised by the result.