The middle fire

Sean and I on Thanksgiving(ukkah)!

Brother Drew and I!



I’m not going to lie: I love my birthday. I think that’s pretty clear to anyone who knows me. I LOVE my birthday. It’s a chance for me to get glammed up and celebrate.

I think it’s also probably pretty clear to everyone who knows me that I love to celebrate. Anything. Especially my birthday. I won’t go so far as to say I “don’t like” people who don’t like birthdays; instead I’ll say I don’t understand it. I don’t quite get it. Sure, it’s that whole “I hate getting older” thing. But for me, getting older is a celebration. Reaching another year is something to be proud of. Birthdays are an accomplishment. They always have been for me. I have never, ever once gotten upset on my birthday and thought my life was going by too fast or I was getting too old or I’m not “young” anymore and all those other nonsense reasons people don’t like birthdays.

What exactly IS the problem with growing another year older? Another year closer to gray hair?

I really, really don’t get it. Myself at 29 (which is what I’m turning on Dec. 22) is still the same Marjie. Nothing will change. (I do have a gray hair by the way and I embrace it.) Just because I’m 29 doesn’t mean I’ll be any less fun or I’ll be a slower runner or I’ll be any less smart or any less passionate or any less stylish or any less loving or any less kind or any less attractive or any less motivated or any less strong.

Reaching a birthday is a milestone: it is another year gone by. Another year reached. Another year experienced. More memories. More life under my belt. And what is wrong with that?

It is a reason to CELEBRATE. I’ll celebrate when I turn 29 and 39 and 59 and 109. (maybe to the 109).

I personally love getting older. I love knowing I have made so much of myself and my life. I love knowing there’s more to come.

Not everyone gets to grow up. Not everyone gets to get older. We should count each birthday as a blessing. Each time we turn another year older we should be happy we made it. Not everyone is so lucky.

And besides, age is a number. It doesn’t tell me how good I am at something. I choose what to make of my life and myself, numbers aside. Numbers don’t have any say, in that just because you’re a certain age doesn’t mean you can or can’t do something.

For me, personally, because this is my blog, celebrating a birthday is celebrating another year of being cancer-free, another year I have made it post cancers #1 and #2. Another year I am healthy and strong. Another year since illness. Another year my body and mind have had the chance to recover or work on recovering.

Like a fine wine, I plan to get better with age.

That’s not to say getting older doesn’t come without its things. (A gray hair or a harder time recovering from a night on the town. Or digestive issues. Or pimples I’ve never had before that have just decided to show up)

But all in all, to me, birthdays should be met with joy.

And this year, like in years past, there is much to celebrate. (Though on my birthday two years ago that could be argued, as that was the day I was diagnosed with Li Fraumeni Syndrome.) 29 is not the best number in terms of number-activeness, like 22 is. Nice and round and even. Or 30. Or 88. 29 is just 29. It’s like the edge of something. The edge of my 20s. The very edge. The very last of them. But as I climb those numbers I am reminded I am living. Getting to each number is something to love and to appreciate. It tells me I’m still going strong.

On adoption: we have begun the mountains of preliminary paperwork. Each paperwork has its own paperwork. We just applied for, and got approved for our home-study, which is all the background checks, interviews, etc. We got fingerprinted, are collecting reference letters, filling out financial forms, getting letters from our places of employment, etc.

Thank G-d for Sean, because all of this is really overwhelming, just as I knew it would be, and really stressful, just as I knew it would be. But he’s calm and collected about all this. He sets goals and follows through. He remains focused and motivated. That’s one of the many reasons I love him and married him. He helps me stay on track with things are tough or scary. And with this adoption process, with all of the stress and the emotions and the challenges and the time-consuming-ness, it’s easy to feel lost. But he’s organized and on top of everything, and we are getting through it together. One day at a time. We’ll get our paperwork in, we’ll get our profile book made, we’ll get the room ready when we need to, with only the things we need to. It will all get done. It always does. Because of us, together, as a team.

There’s so much paperwork that’s certain, with so much uncertainty attached to it. But the worth is measureless. You can’t measure how much this is worth it. Or how scary it is or what the outcome will be or how we’ll do or handle the next thing. But I know, from past experiences, we just will. We always do. When something matters, we get it done. When something is important, something is important. And this is our middle fire right now. This is our top priority.

And it really is Sean that gets us through it. Especially this. I’m not good with paperwork. Filling out college applications almost put me into a panic attack because I felt like I wasn’t writing my name neat enough.

And our financials. Health records. Criminal records. Law things. All of these things are Sean’s strongpoint. Not mine. I can start researching car seats.

Yes, it’s hard. Yes, it’s weird. Yes, we have a lot to learn. Yes, we have a lot to do. Yes, this is super inconvenient and time consuming. But the end result is measureless.

On clinic: UGH I can’t believe my LFS clinic is on Monday. I’m actually getting very nervous thinking about how LONG I will be in those MRI machines. I’m actually getting nervous about them “seeing something.” But overall I’m excited to be getting scanned, excited to be in the study and excited to be starting these very important screenings.

Being in an NIH study while beginning the adoption process is a little stressful. There’s a lot going on right now. But I’m lucky we have so many good things to look forward to and so many reasons to celebrate.

It’s winter in Happy Valley. There’s snow on the ground. We’re three days into Hanukkah. Thanksgiving was awesome. More parties this weekend. It’s almost my birthday. We’re (eventually) getting a baby.

It still amazes me how fast time flies, and how vastly different this winter is than last winter. And also how much is still the same.

I was not aware how long this post was going to be. But in all fairness, I never am. Because when I start writing I never know what will come out. And that’s my favorite part.

In tying it all together with a neat little bow:

We touched on my upcoming birthday, where we are in the adoption paperwork and my screenings on Monday.

Birthday. Adoption. LFS screenings.

That’s what December looks like.

And as we get to January 2014, I will have celebrated my birthday and my clinic will be over. (That part of clinic, anyway.)

Ok, I am HOPING screenings will be behind me. Meaning, they see nothing worth mentioning and I go on my merry, healthy, clean-scan way. And entering 29 will have been celebrated. And the adoption process will continue, full-fledged, full-flamed.

The middle fire is burning bright. And it’s both scary and exciting.

The path

Campbell with a leaf stuck to his nosey!



I’m going to go ahead and attribute this to starting the adoption process, but in the past four days I’ve had three dreams about Campbell, all very different. Some disturbing and some lovely.

In this order, dream 1: Campbell weighed 110 pounds. In the dream I kept thinking how fast he’d grown.

Dream 2: Campbell had two puppies, also chocolate labs. I understand Campbell is a boy and he can’t give birth, and I also understand he is 2 years old, but in the dream Campbell had two puppies. And I was ecstatic.

Dream 3, last night: Terrifying. I had a dream I accidentally cut Campbell’s armpit with a pair of scissors, and it was bleeding so we had to take him to the vet. When I woke up this morning I made sure to pet him extra carefully.

I’ve never had this many consecutive dreams about Campbell, especially with such varying emotions and events. I am sure all three had to do with the prospect of me becoming a mother for the first time, potentially within the next year or so.

I am not a mental health professional, a licensed psychic or even a dream expert, but I do know myself pretty well so I’ll try to analyze. Dream #1 has to do with me and Sean raising Campbell and him growing up big and strong. (Very big, apparently.) When we first got Campbell at 7 weeks old, he was a tiny blob, as I like to call him. He was a shriveled, wrinkly little blob who Sean had to carry outside to use the bathroom. He was all blobby and wrinkly and crumply. Now he’s a tall, skinny lanky dog; completely opposite of a blob. I know he will eventually grow into his body. He’s probably just on the verge of 60 pounds now, but I know male labs can get pretty big, and not that we’d ever let him get overweight or get to be 110 pounds, he probably still has about 20 more pounds left on him. I think the dream resembled us raising something from a blob to a beast. And in my dream I was a little surprised he was so large, but I loved him and I was happy.

Dream #2 definitely, definitely has to do with babies and birth. I mean, come on. I was thrilled in the dream when Campbell gave birth to two adorable chocolate lab puppies. It made me so happy. So that probably has to do with the thought of a new baby coming into our home, maybe unexpectedly and maybe after waiting for many years. We don’t know when our child will come. Campbell having babies = us getting a baby.

Dream #3 has to do with me being scared, nervous and anxious about being a mother, and being afraid I’ll mess up. I think this is pretty standard. Most (all?) moms, whether they have one child or 200 children, are nervous about doing something wrong. But we all learn as we go. We’ll mess up millions of times. And like my mom said, there is no way to really teach someone how to be a mother. She compared it to telling someone the meaning of life. There is no one way or one thing. Whether I’d have the baby myself from my body, or get the baby from someone else, I will learn as I go.

Friends of mine have told me terrible, horrible, scary dreams they’d had about hurting or killing their child in their dreams, either right before birth or right after. I know our child won’t come from me, but a mom is a mom is a mom. I’m scared just like any other new mom. The only difference is I don’t know when I’ll be a new mom. I do know that it’s OK to be scared and it’s OK to be nervous. Everyone is. Becoming a parent is scary for the first time or the 500^th time.

I think I have all of the normal feelings as we begin this process, and I am sure they will continue to evolve thousands upon millions more times. There are still so many questions, challenges and unknowns. But I KNOW it’s OK to be nervous. Something I’ve pictured my whole life (me as a mother) is now becoming a true possibility, whether it happens right away or in two years. The idea that it IS happening is scary, of course. And it can be both scary and exciting. It was always an idea, a picture. But it’s slowly turning into reality, though the process may be different than what I had pictured.

But life doesn’t always go the way we plan or picture or even hope or dream. Truly, it doesn’t.

But if I think back really hard about when I was a little girl, my life now is not so different than what I had wanted. I have always wanted to be a mother and I remember thinking when I was younger that I wanted to have both a biological child and adopt a child. Because I wanted to have a child just like myself, but also give a child a home.

So although life doesn’t always go how we want or plan, there is comfort knowing that in my heart of hearts, I always find a path that fits. It may not be the exact path I imagined, but my values and ideas haven’t changed.  

Meaning, life events occur. Some bad, some good. But in the end my life path will be my life path. There’s no way to know what will happen in life, or even prepare or plan for it. You make work what you are dealt. And somehow, someway, it ends up being pretty on target. Because you can’t really change who you are deep down. I’ve always been the same person.

A lot of people assume that pink is my favorite color because of breast cancer awareness. And while I appreciate that, it couldn’t be further from the truth. Pink has always been my favorite color, from the time I knew colors even existed.

I don’t like pink because I had breast cancer. I like pink because I like pink.

It just so happens pink is the color of the breast cancer awareness ribbon.

I know with the adoption process, my health is going to come up a lot. There are going to be lots of inquiries, from friends and professionals, about why we’re adopting and if it has to do with fertility issues. And while it’s nobody’s business but our own how we decide to start a family, and while our friends and family support and love us unconditionally, and while we don’t owe anyone an explanation, it will come up. It’s inevitable. And it’s so, so, complicated.

This is one of the issues I brought up with Dr. Kelly today. No matter how it’s done, people are going to ask about how you have kids. And they are going to have their opinions and suggestions, no matter how insulting, inappropriate or off-base. So I wanted to have a quick, go-to, close-ended statement when people ask. Because it’s not fertility issues and it is so, so, so much more than “medical issues.” And when you say “medical issues,” that opens up the floor for even more questions. And frankly, my “medical issues” are none of anyone’s business.

So Dr. Kelly came up with “A biological child is not a possibility for us, so we’re excited about adoption.”

And that’s it. Done and done.

It’s not the whole-world truth, but it’s OUR truth. The whole-world truth, as I’ve labeled it just now, is that we don’t know if I could have a biological child. We don’t know. We don’t know. The process of finding out is daunting and complicated. And does anyone really know anything? No.

BUT WE HAVE DECIDED NOT TO. Therefore, it becomes OUR truth. We made the decision that we’re not doing that. Why? For a million different reasons. Long answer is an essay about Li Fraumeni Syndrome and breast cancer and hormones and Leukemia treatment and chemotherapy and genetic testing and genetic intervention and carrying a child and my body and 5,000 different doctors and emotional and mental. Short answer: A biological child is not a possibility for us.

It will come up and people will ask and it doesn’t matter that it’s our business and our decision, so I wanted to be prepared so I wouldn’t have to put myself through the stress and anxiety of finding the perfect five words to capture a 1,000-word explanation.

So, somehow getting back to where I started … Just like any prospective parent, I am nervous and excited about being a prospective parent. I have dreams about my dog having babies and me cutting his armpit with scissors. I had to come up with a response to the nosy, mostly well-meaning people who have lots of questions and a whole lot to say about adoption. And part of me, way back when, always knew this was going to be a thing. Back when I knew I liked pink I knew I wanted to be a mother. Some things got in the way and made it, and are making it, a little more of a journey than I imagined. But that’s OK. It’s a journey for everyone. No matter how the child gets there, it’s a challenge and a journey. It’s hard for everyone.

So my path feels pretty good. I always knew I had a good path ahead of me. And it just so happens there are a whole lot more flowers than I could have ever imagined. I always knew I deserved the best. And challenges and unexpected hardships have nothing to do with that. They will come up no matter what. They don’t define anything. As in, this could happen but I can still have this. My hardships don’t take anything away.

The breast cancer could happen but I can still have my wedding. The Li Fraumeni Syndrome could happen but I can still be a mother.

Never veering off the path.

Saying it's OK

I love my guys!

With nearly 200 posts since starting Pink and Pearls in summer 2011, I have many favorites, so I started to go through some of them to gather a list. (You can see the work in progress on the “Best of Pink and Pearls” page up top.)

Every now and then I scan through some of my older posts to read what it was like when I had my expanders in or when I was waiting for test results or couldn’t move after surgery. Not that I forget what it was like; I mean, it was not even three years ago. I remember quite clearly, but my life has moved forward so much since then sometimes it almost seems like ages ago. Or maybe I try not to remember. However, sometimes the remembering helps me be stronger today. Knowing what I went through and how incredibly painful it was (in every way) and then looking at my life today and what I’ve accomplished (six surgeries, marriage, honeymoon, new dog, new house, Tour de Pink, 9 5Ks, etc.) give me some perspective. So much has happened since I started this blog. I’ve overcome so much. Pink and Pearls started as my “planning wedding while coping with breast cancer” blog, and now it has not only morphed into a blog about “life after breast cancer,” but my next steps in life, which revolve around my Li Fraumeni Syndrome and our adoption.

Even though the breast cancer is over, there will always be challenges that go back to the breast cancer. But starting the adoption process tells me we are moving forward, and yes, while there are new challenges, these are moving-forward challenges. Yes, new challenges arise from having LFS and starting clinic next month, but these are also moving-forward challenges. These new challenges and adventures, if you will, are our next steps in life.

Nearly two years ago I found out about the LFS, and next month I’m starting my screenings to help manage the LFS. When I started Pink and Pearls I was engaged. Today I am married, and not only did we have the most phenomenal wedding, we had the most phenomenal honeymoon and we built the most beautiful house. And not only all that, but we’re starting a family. Starting to start a family. Starting to start. Even if we were to have a child the “conventional” way, we would still be starting to start. But we’re not; we’re adopting. And we’re starting to start having a family. Lots of starts. Lots of new things.

The breast cancer and LFS is still very much a part of my daily life and daily thinking. And why shouldn’t it be? Because of the LFS I quite obviously live my life in a certain way. I see a million doctors all the time. I’m only 28 and have already had my first colonoscopy. And next month I’m getting my brain and entire body scanned for cancer. I get my blood checked every four months. And every lump or bump is drop-dead-serious, get-in-to-see-the-doctor-tomorrow. A persistent tummy problem is an abdominal ultrasound. This is quite clearly the LFS way of living. No doubt. And of course, all the organic and the raw and the green and the clean, from food to toothpaste, and from stainless steel water bottles to the No Poo Method. (No Poo is saying “no” to shampoo and instead washing your hair with apple cider vinegar and water). I’m not perfect: I still drink wine and eat cookies and wear makeup that isn’t 100 percent natural. Trust me, do I eat cookies. But if it weren’t for the LFS would I be as organic and clean-driven as I am now? Maybe. Maybe not.

If it weren’t for the breast cancer and the LFS would I have done Tour de Pink? No. If it weren’t for the LFS would I have made running such a priority, and set goals for myself to complete a 5K, 10K, 10-miler and then half marathon? Would I run 10-14 miles a week? Probably not. I run to stay fit and to keep my body strong, both to protect against cancer and be prepared if I get cancer again. After my first mastectomy my doctors told me I healed so fast because I was in such good shape. And after both sides were done again (expanders exchanged for implants) and I couldn’t use either of my arms to get out of bed, I used solely my abdominal muscles to lift my body up. I’ll never forget that. I’ll never forget what the doctors told me. I’ll never let myself get weak. I hope it doesn’t happen again, but if it does I want to have my armor on.

Anyway, it’s quite clear I live my life a certain way because of my previous cancers and because of the LFS, so it’s only natural I’d think about it all the time. It’s almost like everything I do, I’m doing because of the LFS. Not in a bad way; rather in a yolo-way. (Yes, I said yolo. Deal with it.)

Having two cancers and LFS has forced me to live fully and without reserve. While I am not without my stresses, I am consciously and constantly trying to reduce them, and also focus on what lifts me up. Because when I encounter a negative person I ignore him or her. When I encounter a negative situation I leave it. When I come across a negative feeling that is my own, I work to resolve it.

If something upsets me and it’s out of my control, I count to 3 and let it go. If it’s in my control I find a way to improve. I tell myself I’ll do better next time if I can. And if I can’t, I tell myself to move on.

Because life is too short. This I’ve learned and this is how I live. And I love it.

It’s not just my way of coping, it’s my way of thriving. And since the breast cancer and the LFS I have made it my mission to (sorry for the cliché) not just survive, but thrive. And I have and I will continue to. That’s my mission for myself and my life. Live. Thrive. Eat it up.

Reading past posts on Pink and Pearls is a norm for me, as I’ve always, since as long as I can remember, found great joy in reading old poems, stories and diary entries, looking at old photos and reminiscing about old times with friends and family. I’m lucky in that each day new memories are made, but part of my life and part of living and growing is remembering where I came from and remembering both the good and bad that made me who I am today.

It’s OK to not be too far away from the breast cancer. But it’s also OK to not remember the expander pain in too much detail. There’s always been a part of me that believes I have to keep the pain close or else it will come back. If I become too removed from the breast cancer I am not protected against it. If I forget what it put me through there is no chain fence keeping it from coming back.

But that’s not true. We know this. Those thoughts are coping mechanisms.

It’s OK for me to read about the physical pain and the mental agony of two years ago and remember and maybe even cry. But it’s also OK to let myself move further from it each day. Just because I’m moving further from it doesn’t mean it will come back.

I’m not keeping myself safe by keeping the pain close. And that is such a hard thing to learn about myself.

Open Arms

So we drove to Philadelphia and back last night for an informational session with the Open Arms Adoption Network (http://www.openarmsadoption.net/).

What was really good was that there was no new information in terms of earth-shatteringness. Meaning, when we met with the adoption attorney in State College a few weeks ago, who represents and finalizes adoptions through Open Arms herself, she provided us with a lot of information. We did learn some new things last night, but most of what we heard during the one-and-a-half-hour session was stuff we already knew, or more confirmation of what we already thought, in terms of the process, the decisions we need to make, how to move forward, costs associated, etc. So we were well-prepared going into the meeting, knew the background information, had viewed the profile books, knew about the state laws, etc. But the big thing is: we chose to go with an agency, and as you probably have assumed by now, YES, we are going with Open Arms! First step: completed! We have chosen an agency!

Before last night’s session we were still entertaining the idea of a private adoption, but after hearing even more about Open Arms we decided to use them. We made this decision for a variety of reasons, most of which I won’t go into too much detail because there are many and they are complicated. But the general ones being: with an agency, and with THIS agency:

1.       Our costs are straightforward: we know what we have to pay and when, and there will be no surprises. With a private adoption, the birth mother’s medical costs and prenatal care, rent costs, etc. could all be part of our equation. With Open Arms, we know, financially speaking, what we face.

2.       The process is (pretty) straightforward. As with any adoption, there is no guarantee. But what we learned last night was that Open Arms finalizes about 32 adoptions per year. Wait time, depending on when we get our paperwork in and when we complete our home visits, can vary from 8 hours (yes, that happened) to about two and a half years. Like I said, nothing is ever for certain, in that birth mothers can change their minds at any time (and you could have to start all over again) and we can run into an unforeseen roadblock, BUT, from what we learned last night is that most of the families are placed with a child. It’s not a guarantee but the success rate is so high it’s not even talked about as a “success rate.” So, with Open Arms, we WILL get a child. It’s just a matter of time.

3.       Open Arms does infant, domestic, open adoption. Meaning, we would get an infant from any of the states they represent, which is Pennsylvania, Delaware, New York and New Jersey. With open adoption there are many different levels and many different variations. Essentially, Open Arms’ philosophy, which Sean and I both agree with, is that our child will know he or she is adopted and will know about his or her birth parents. And there is contact between the birth mother and the adoptive parents. Open Arms believes a child’s upbringing and mental health will be better if there is no mystery, such as “who is my mom?” or “why didn’t my mom want me?” or “where did I come from?” Because kids are GOING to ask questions and they are going to want answers. We believe in openness and honesty. With this process, there is no mystery and nothing is being hidden from the child. The child will know who his or her birthparents are and will know the process in which we, as adoptive parents, welcomed him or her into our family. With Open Arms, birth mothers actively seek out an agency, they are serious about finding a good family for their child, they read the families’ profiles and make very detailed, in-depth, informed decisions. They truly want what’s best for their child. So the process is open. We meet the birth mother ahead of time, she “chooses” us, and we set up framework, such as what kind of contact there will be after the adoption is finalized. This could mean visits once a year, letters, pictures, etc. That will be up to me and Sean. But the point is there is no question or mystery. We believe in honesty and we believe it’s best the child knows where he or she came from so when it’s time to ask questions we have honest answers. Nothing is hidden. This is important to Open Arms and important to us.

4.       Still going along with No. 3, because of Open Arms’ openness philosophy, we would know all about the birth mother, including her health, and may even be invited to the hospital when she gives birth. There are no secrets; since the mother has CHOSEN the agency she has CHOSEN to provide us with information, helping ALL parties be a part of the health of the baby, etc. And of course there are always exceptions, but with the agency essentially the birth mother and the adoptive parents know what they are getting into – they know information ahead of time and can make informed decisions.

So those are just four of the many reasons we decided to go with Open Arms. The steps are a little clearer now. I just sent an email this morning to the director saying we are ready to begin the process, and I think by the end of the year we will have started sending in our documents. The hard part is now: getting everything in, getting our home visits scheduled, putting together our profile book. I know the waiting will also be hard since it could take years, but at least once all of our stuff is in we know we’ve done everything we can.

After last night’s session adoption doesn’t seem so far away now. Yes, there’s lots of work to do and we are starting the very early steps of what is going to be a difficult, challenging and stressful process, but now the tasks seem more clear and it doesn’t seem SO far away that we will have a baby. It could take a few years but now it actually seems like it will happen. So we will be parents. Not soon but eventually. And not without a lot of hard work.

But other families do it for a variety of reasons and they are successful. We will be successful, too.

I really can’t stress enough how much it means to us to have so much support from our friends and family. I know not everyone in the world understands why we’re doing this, but like with starting ANY family, our decision is a personal one, between me and Sean, and was made after much thought and deliberation. And the important thing is that WE understand and that the people who love us understand. The decision was made with the knowledge we have now. We are so thankful to have everyone’s blessing as we embark on this journey. We realize not everyone is so lucky to be so supported, so we really, really thank you ALL for your kindness and compassion. Thank you, truly, to our friends and family. Thank you for standing by us during this process and for welcoming, with open arms, our future child, whenever he or she gets here, however he or she gets here.

Marjie's resort



Thanks Jordanna for this  cute picture taken this past weekend! Here I am, with Jordanna, Rachel and Karishma, enjoying wine and Late July organic tortilla chips during our girls' weekend in Happy Valley. I took the girls to the new winery in our backyard, which is where we spent the afternoon just chatting and relaxing.



My green juice! I make one batch (about 1-3 servings) every week, though I'm trying to do more. My greens are usually kale, cucumber, celery, dandelion root and other leafy greens and green vegetables. I'm working to expand my variety but I LOVE my usual combination!

Between my LFS clinic starting next month and us embarking on the path of adoption (we’re going to an informational session with an agency in Philadelphia tomorrow – yes, tomorrow! – night), things have been pretty hectic. This past weekend was so much fun! Three of my best friends came into town to visit me and see the new place, and we had a weekend full of laughing, gossiping, wining and dining! Plus, I ran a 5K Saturday morning in 24:21, which is my fastest 5K (competitive or by myself) to date! Next step: me and Sean registering for that 10-miler in March I mentioned, and START TRAINING!

I can’t adequately describe my love for running. Well, I can try in a few words: freeing, cathartic, emotional.

I enjoy having another race on the calendar, another goal set, another reason to improve, another milestone to reach, another way to better myself.

So, our next life steps are busy. Not like it was at all planned, but it just so happens I’m getting all of my super intense super comprehensive cancer screenings literally within weeks of making big decisions about how we’re going to start a family and then actually doing things to make decisions, all within weeks of the LFS conference all within two-ish months of one of the biggest, most challenging three days of my life. (Tour de Pink, you are STILL rocking my world.)

All this is meshed in with our regular lives and schedules of work, football weekends, visiting and having friends visit and adding furniture to the house and meeting Gabby Giffords. I’ve always found I enjoy being busy and having plans, and for a while now I’ve successfully figured out how to be not too busy, aka: finding a balance between the craziness and peace. Even now that Tour de Pink is over I am still finding myself very jittery and very I-need-to-be-moving. I don’t know if it’s the stress of LFS clinic coming up or the huge life change approaching of starting the adoption process, but I’m very antsy, even after a good run. Not that I need more things to do, but that I am having trouble not thinking too much, which, as I type it, really seems pretty normal and OK. I’ve always thought a lot. I worry, I stress. And the things I’m worried about today are pretty much the same things I’ve been worrying about for years, just with different levels. And of course you can lower that level a lot now that the breast cancer surgeries are over. I’m just antsy and anxious. And sure, there is a lot going on in our lives right now. But it almost seems the more I try to find my peace the more I’m looking for it. I could talk all day about how I’m so green and earthy and how that goes along with finding my center and living in the now, and meditation and yoga, but I am SO not that person. I mean, I want to be. I would LOVE to live in the now. And sometimes I do. Sometimes I stop and stare at the sunset or take a picture of my rose bushes blooming. Sometimes when I take Campbell out for his nighttime piddle I stop to look at the sky, look at the stars and take a deep breath of fresh air and take in the night sky. Sometimes I force myself to sit quietly in a room with no cell phone and no TV on, and even no magazine to read. I make myself eat dinner without distractions, also called mindful eating: when I’m eating I’m not doing anything but eating. I’m not reading anything or watching anything; I’m paying attention to my chewing, how the food tastes and when to recognize when I’ve had enough. And when I’m done eating I sit quietly, give myself time to digest, and then go onto the next thing.

I’m all about trying to practice mindfulness to reduce stress. But I am so NOT a peaceful person, internally speaking. I’m a peaceful PERSON to others and to the world, but I am not peaceful within myself. And I always thought I could change that. And maybe I am working on it. but it is SO not me. I am a vata, after all. Instead of being neither here nor there, I’m EVERYWHERE. ALL THE TIME. I’m Google calendar. I’m scheduling runs by the mile, scheduling when I’m going to juice vegetables, when to paint my nails. I have a growing list on my iPhone of natural/organic supplements and herbs I have yet to try. I want to be a naturally-healing person for myself. I want to be calm and zen. But I am now realizing my calm and zen IS my scheduling. It IS knowing I have a 3 mile run on Monday after work. It IS knowing, down to every last detail, every item on our grocery shopping list and not veering off course, even for a pack of pre-cut mangoes. My calm, if you can even call it that, is knowing my details, knowing my plans, having a plan, doing my plan.

Ever since around my first breast cancer surgery in 2011 I have an imaginary place in my mind I think of when trying to fall asleep. Originally it started as a massage parlor and chiropractor’s office with candles and incense, because my back and neck were so sore from all my surgeries. For years of my life, between those surgeries and because of my expanders, I couldn’t sleep on my sides or stomach. I couldn’t stretch. My neck and back were in constant knots. They would throb. And the worst was when I was trying to fall asleep. I couldn’t get comfortable. All I wanted was to stretch my back. What I wanted so badly was something I couldn’t have, and that was to MOVE.

So I would envision being face down on a massage table and having someone massage and crack the hell out of my neck and back. That was my fantasy. Some people dream about people or food or places or shopping. My fantasy was having someone knead my back like dough, removing the muscle knots, opening me up and finally, finally relaxing me.

Over time that massage parlor slash chiropractor’s office developed. It soon became a resort. Today it’s a little house in the middle of the woods. There is a pool on one side of the house. On the other side, in the back, is a garden where I do yoga. Around the house is marked running trails which tell you your mileage at each mile.

As I began developing this dream place in my mind before bed, and as I increasingly gave it more detail I realized something very obvious: my relaxation is planning. Because soon, in my fantasy place, my massages were scheduled. My yoga sessions were scheduled. My runs, followed by my pedicures, followed by my facials, followed by my afternoon nap, were all scheduled. Dinner was at 5, like I like. Bed time at 10 p.m. or before. Coffee in the morning but not after 12 noon. All the grapes are washed, organic and ready to eat. Green juice every day, sometimes twice a day. My choice of leafy greens. Fresh figs, fresh mango. All of my favorite foods prepared just the way I like by professional chefs. But the rule is: everything is organic. All raw foods.

As my imaginary resort kept getting more detailed I realized if this is MY fantasy, and I can have anything I want in my resort, and I am choosing SCHEDULED tasks, then this must really, really, really be my idea of a good time.

Because I soon learned I could only truly “relax” at the pool at my resort if I’d had a good run in the morning. I could only feel good if I was eating my usual amount of fresh fruits and vegetables.

I would envision myself at my secret fantasy resort lying at the pool in the shade eating fresh fruit and doing nothing. Or maybe Insta-gramming. And in my fantasy I couldn’t relax until I’d known I’d run that morning. And that’s how my special resort got its scheduling. Run at this time, massage at this time, fresh fruit all day. Bed early. Rise early. Do it again.

And what have I discovered: I LOVE scheduling. I can’t “relax” until my “things” get done. So now, all of a sudden, my definition of relaxing is different than what I always perceived it to be. It’s not in doing nothing and being Ok with that; it’s doing everything and being OK with that.

Omigoodness. Some people wait a lifetime until they figure out some very weird and defining characteristics of their personalities. Me? I guess I’m lucky that I figured out now what MY idea of living fully is. It’s not what I kept pulling and pushing it to be. For me, it IS doing this and scheduling that. And when I’ve done all that and my cucumbers are juiced and the laundry is folded, then, and only then can I sit on the couch and watch Dr. Quinn, Medicine Woman with no care in the world.

My fantasy resort keeps getting more and more detailed. It first started as a place where I’d do all those things by myself, or with the help of the hired staff: yoga, massages, cooking, etc. And then I realized I wanted Sean and my friends and family there. And then I realized I need a resort dog. And then I realized Campbell would do just fine.

Besides the obvious tropical location and knowing my running mileage without Runkeeper, my special resort is not too different from real life. I buy and prepare most of my own food, juice my own vegetables, schedule my jogs and yoga, and if I really wanted to, I could take a nap in the middle of the day (on Saturday or Sunday) with the windows open (but not in November, December, January, February or March).

I think I’ll stick with my very rigidly-scheduled relaxation resort in my mind. The perfection of it all is that I schedule everything I want to do, because there’s so much I want to do. The perfection is fitting it all in. And it being effortless. The perfection is in the nature and in the weather. And the fresh fruit and the sunsets. All that surrounds us in life is perfect, even the imperfect things.

And maybe one reason I love my schedules so much isn’t because I can’t just “enjoy now” and “live in the moment”; maybe it’s because there’s so much reason to live in the moment and so much I want to enjoy. It’s true, I can still have an enjoyable day when not everything gets done, and there is a huge part of me that likes flying by the seat of my leggings. Half the time I love plans and the other half I don’t mind being spontaneous. But I think the best lesson I learned, one that came from my fantasy resort, is that I can’t and shouldn’t try to change such a huge part of me. I shouldn’t question what makes me happy. I should just let it. I shouldn’t always be working to find “my peace” and meditate when that clearly isn’t me right now. My fantasy resort, for goodness sake, has a schedule. My FANTASY RESORT. The one I made up, IN MY MIND, has a schedule. That tells me something.

It tells me I just love life a lot.

And it tells me I should stop trying to be something I’m not. Who I am works for me. No need to fight it. And like Pink and Pearls knows very well at this point from all my blogging and “figuring out” from the past two and a half years: there isn’t always an answer, there isn’t always a solution, and that is A-OK.

Clinic and the future

At Stephanie and Channing's wedding reception this past weekend in WV!

Congrats to Sean, who made PA Business Central's "Foremost Under 40" list for 2013!

Thank you, Marisa, for this gorgeous picture of Campbell taken while graciously babysitting him over the weekend! Cam will be 2 years old on Nov. 12, and he is ready to be a big brother!

After nearly two years of submitting information, my first clinic date has been scheduled for the LFS study by the NIH! (http://lfs.cancer.gov/li-fraumeni.html)

My clinic visit will be Dec. 2 at the NIH in Bethesda, MD. It will consist of a full body MRI, a brain MRI, and blood work and a physical exam. I am told it will pretty much take all day, from around 8 a.m. to 8 p.m. I’ve never had a full body or brain MRI before so of course I’m really nervous about being in the machine for long periods of time, and also that they could find something. This is the first time literally ALL of me will be looked at, which means things (cancer or non-cancer) could pop up anywhere.

Despite all this I’m actually really, really, really excited to finally be getting this done. I know it sounds crazy, but having these scans will give me SO much peace and relief and SO much control over the LFS. I’ve really taken control since the diagnosis with my blood exams every four months, annual breast MRIs, colonoscopy, dermatologist appointments, abdominal and transvaginal ultrasounds and regular physical exams, but these screenings will add so much to that. So I feel like I’ve BEEN in control, but this will really be the icing on the cake, if you know what I mean.

Just knowing my entire body, from toes to brain, are being scanned for cancer, makes me EXCITED. Is that sick? I can assume I’m fine because of my regular check-ups, but after these, I will KNOW I’m fine.

Up until now it’s been an ultrasound here and there to look at this and that, but with my clinic appointment it will tie everything together. I know it will be a hard day and a long day and a stressful day, but I’m ready. This is part of my plan. I want to be in control of this crazy thing called LFS. It’s one thing to be scared to get scans. It’s another thing to be scared because you’re not getting scans.

I am pretty confident they won’t find anything. But the idea is that if they do it will be taken care of. Will it be pleasant? No. But this is life now and I am so grateful I get to be in this study. All of these scans will be covered. If I wasn’t in the study we’d have to pay out of pocket for these scans. This way everything is taken care of. And hopefully, just hopefully, I play a small role in advancing medicine and LFS screenings and treatment. Maybe they will learn something from me.

Besides clinic, I’ve been letting all of the information about the adoption process sink in. I’m really excited to be starting this process and feel really blessed we are in a position to take this next step. I told Campbell there will be a baby in the house and he seems to be OK with it. I know he’s used to getting all of the attention and being the center of attention, but this process will give him plenty of time to adjust to no longer being the “only baby” in the house.

Our family, no matter how we have one, will be special because it will be ours. It will be unique because it will be ours. We’ve never shied away from a challenge before. And the adoption process isn’t just a challenge; this is the next step in our lives. It just happens to be one we didn’t expect, but thanks to medical advances we could plan for it and are ready for it.

I’m really excited and looking forward to ALL that we have ahead of us, from starting a family to our first 10-miler to Ireland next year to all of the family events we have coming up, and all of our pregnant friends and babies being born and more weddings and more travel. I never thought I could be so blessed to lead such a full life.

So bring on the MRIs. It’s one more item on the list being checked off: me in control of my life and my health in preparation for our eventual baby and our future.

The next stone is scary



Happy Halloween 2013! Campbell went as himself, and I went as a cat!



This morning we met with an adoption attorney, the very first step in what is likely to be a long and stressful process. Prior to the meeting we had no idea what kind of adoption we want to do (private or through an agency, open or closed), what the next steps were, how to get started, etc.

This is the first time since we decided we were going to go the adoption route that I’ve actually been angry at the LFS for bringing us to this. And this is the first time I’ve really written on Pink and Pearls that we’re definitely going to be adopting. I’ve known for a while but never really ever typed it out. Well, I’m doing it now. We are going to adopt!

I KNOW adoption is going to be hard. It’s going to be really, really expensive. It’s going to be stressful. It’s going to be challenging. It’s going to be one of the hardest things we’ve ever done. But I knew all that. I know we have a long road ahead of us. And we’ve proven, time and time again, there is no challenge we can’t take on together.

And we know life doesn’t turn out how we sometimes hope for or plan for. We didn’t plan or hope for the breast cancer. We didn’t plan or hope for a rare genetic mutation that changes, literally, the entire way in which we live. But we got through it and are getting through it and doing the best we can.

Did we one day think adoption would be our best option? Probably not. But it is and we’re doing it.

Not that I have to explain myself or the choices Sean and I have made and are making regarding adoption, I will lay out the thought process to help explain how we got to this decision, and also to help me sort out, again, all of my thoughts, because there are aplenty.

Reasons why we’re choosing adoption. (Note: this could change in a few years, but this is what we decided now in order to start the process of having a child.)

1.       The Li Fraumeni Syndrome. There is a 50-50 chance I could pass on the LFS to my child. As you know, with LFS, there is a high chance of that child getting multiple cancers throughout their life, and especially as a baby, child and young adult. There ARE processes in which a mother’s egg can be tested for LFS and there are other medical processes and procedures that could potentially (potentially) reduce the risk of passing the genetic mutation on, but they are risky, expensive, don’t always work, and may not be best for my body. After reading about and meeting in Boston other families with children with LFS, it broke my heart. I know all children have a risk of getting sick, but I can’t knowingly pass on this mutation to my child. If I didn’t know about it prior, like is the case for many of these families, then that’s one thing. But now I know. I have the knowledge. I can’t have a child with LFS. I just can’t and I just won’t. I won’t raise a child that has to get blood tests and brain scans starting at infancy. I can’t have a child where I worry that every nose blood or every bruise is Leukemia. I won’t do that. There are other options.

2.       My personal cancer history. Because of my personal history of two separate cancers, I have chosen I do not want to put myself and my body through a natural pregnancy. Besides that, it may not be recommended for me to get pregnant, given that I’ve had breast cancer and breast cancer patients may be sensitive to hormones. (Short description: hormones are bad for women who’ve had breast cancer. Pregnancy creates hormones.)

Those are the two most straightforward reasons. We know we have other options, such as a gestational carrier, etc., but those carry their own risks and own challenges. So between the genetic mutation and my personal history, having a natural pregnancy is not the right option for me for a variety of reasons, many of them medical, many emotional, many complex.

Sean and I have been discussing this decision and have laid out the thought processes you just read for the past year or so. It’s a decision we eventually came to after lots of thought and discussion. Deep down in my heart I know this is the right choice right now. Deep down in my heart I truly believe this is the best option for us. Deep down in my heart I truly believe this is what I want. Deep down I truly believe in my heart we will make this happen, together.

Will it be hard? Yes. Harder than a natural pregnancy for someone with a personal history of cancer and a rare genetic mutation? Not sure of that.

These are only the very first steps of starting the adoption process: attending an informational session with an agency, and then deciding if we want to go the agency route, or the private route. Then, make a profile. This would include family pictures and information about me and Sean that would be made into a book and a webpage, explaining our family, highlighting our vacations, hobbies, things we love. We would use our profile to tell a potential adoptive mother and adopted child that we will provide unconditional love and support. That we, ourselves, are going to be amazing parents.

Then, once we decide if we’re going to use an agency or go through the process privately, we’ll need to get our home visits scheduled. This includes background checks, child abuse clearances, interviews, medical information and doctor’s letters as well as tax returns and other personal documents. This is likely to be a long, grueling process to not only gather this information, but also go through the actual process, which we were told by the attorney, will be very intrusive.

And then there are millions of steps, and expenses, after that, but those are the first.

I have lots of thoughts, so this is the first of many blog posts about this next step in our lives. I am excited and I am ready. This is a new chapter and we are blessed to be able to take it.

But for the first time since all of this I am just now realizing (or just now letting it soak in), what the LFS has done to us. We basically have to prove ourselves to the world that we are going to be great parents. We have to go through this whole long process just to have a child. It’s scary. I feel, for the first time, like the LFS has trapped us a little. I know we have options and I know adoption is our CHOICE, but I feel trapped in this process. We have to do ALL THIS just to get to a certain point, and then do ALL THIS just, JUST to have a baby. So, for the first time really, damn the LFS, not just for changing my life, but for REALLY changing our lives.

It shouldn’t have to be this hard, but it is.

And like I said earlier in the post, Sean and I are a team. There is no challenge we can’t conquer. We’ve already been through so much together and are stronger because of it. This is just another hurdle, another challenge. But it will also be a blessing. We are doing all of this hard, stressful stuff so we can have a child. We’re doing what we have to and what we need to, to take control of our lives.

I can say damn you, LFS. Damn you for making things so difficult, all the time. How I live my life, how I view my life, the doctors I see, the breasts I don’t have, the airport security scan I can’t go through, and now the baby I can’t have naturally. So, fine, damn you, LFS. You made it hard. You suck.

But, again, the LFS doesn’t have a say. It DID things to me and CAUSED me things, but it doesn’t get an opinion.

It doesn’t get to tell me to hold back. I’ve never held back before and I won’t know. We want a child so we’ll get a child.

I can be mad at the LFS and curse it. But it never did, and still doesn’t, get to say what we do with our lives.

We are moving forward. We’re thriving. We’re planning for the future. Is it harder than I thought it would be? Yes. Is life a little bit different than I pictured as a little girl? Yes.

It may be harder and it may be different but it’s still the best. None of that will ever change. This is another challenge that we’ll take on, and get through, together. This is our next step. This is our next stone on our life path. We have approached it and are ready to turn it over.