Foobs!

I have foobs (fake boobs) and OH MAN! are they more comfortable than tissue expanders. I’ve mentioned before that I didn’t have the words to describe what the expanders felt like, but it wasn’t good. In fact, now that they’re gone I can admit that they felt pretty bad. In the moment when something that I’m stuck with is kinda shitty, I like to pretend that it is totally fine. I fabricate some temporary happiness knowing that everything will indeed be totally fine eventually. As the expanders grew with each fill so grew my discomfort, and my attitude problem. If you were one of the unfortunate few who was on the receiving end of my negativity-due-to-physical-discomfort, my apologies. I probably still meant the things I said, but under normal circumstances would have kept those thoughts to myself.  I’ll couple that with an enormous thank you to everyone (especially those I was short with) who has taken such excellent care of me through out this process.

Surgery last week went smoothly. I was in the hospital at 9:30 and on my way home by 5:30. When I woke up from the mastectomy my relief was emotional, but this time it was different.  Since April 4, I’ve been experiencing the emotional euphoria that comes, for me, with taking control over my future/life/health. That euphoria was at the short-term expense of my physical ability to do simple tasks, my energy, and my parenting. Feeling that happy and so physically weird at the same time was a tough balancing act. And sometimes I failed to balance at all. When I woke up from the exchange surgery last week I had immediate physical relief. I was grounded again.

I feel renewed and more like myself. But better. I say better because I have grown as a person, and maybe that is the silver lining around the cloud I’ve been carrying over my head for so many years. That cloud is gone, but I’m keeping the shimmery silver part locked away in my heart.

And, it’s worth noting that I am happy with how I look. In fact, I really don’t look much different. My hope was that I would look about the same because this process was not about physically redefining myself. This process was about future-proofing my body and relieving myself of an emotional burden. Mission accomplished.

 

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Catch up!

Let’s catch up! I’ve been meaning to write a post for weeks. I opened up the computer to write one on Mother’s Day, but played with the kids instead. I almost wrote one last Tuesday about Angelina Jolie, but I decided to go to bed early. So… On Mother’s Day my thoughts only momentarily drifted to feeling sorry for myself. I managed to stifle that feeling by reminding myself of all of my female friends and relatives who’ve told me lately that they think of me as one of their own. Reminding myself that I have those women in my life brings a joyful tear. And Angelina, thank you for prompting no less than 20 people to contact me before 8am! I don’t often follow celerity happenings (mostly because I couldn’t care less) but I’m always grateful when they use their influence/money/voice to back a legitimate cause. From what I know of her, Angelina Jolie puts her money where her mouth is and actually supports the causes she claims to believe in through her actions, not just her words. I also totally dig her slightly unsettling and creepy vibe. Way to go, Brad Pitt, I’d pick her a thousand times over Jennifer Aniston too.

The most difficult thing for me right now is being patient and allowing myself time to heal. There are so many things that I want to do!!! The tissue expanders are really uncomfortable and distracting. I’m still at a loss for how to describe the feeling. Suffice to say that it is very foreign. Though they’re currently barely a B cup,  they expanders always seem to be in the way and their stiffness causes my chest muscles to spasm. I’m not complaining though, this is much easier and less painful than I thought. I am documenting what I’ve been feeling physically and emotionally. My body barely looks different but holy cow does it feel different (my heart and my mind feel different too). I’ve been hunching over because my chest muscles are tight, which has disturbed the muscles all the way to to bottom of my feet! Over the past week the nerves in my chest have started coming back- now small lightning bolts of feeling shoot across my incision. I  had the feeling yesterday that my skin itched, but when I scratched it I was still numb. The feeling that I’m having the most issue with is exhaustion. Sometimes exhaustion comes from hard work or pushing ones physical limits in a good way, I like that feeling. This is a totally different kind of exhaustion. In the moment it hits I feel as if someone is cutting down the length of my spine and taking out the entirety of what’s inside; I feel empty and I fold. I probably shouldn’t allow myself to get to the point of feeling that drained, but I can’t seem to stop. Luckily I’ve been surrounded by people who are full of energy and I’ve been absorbing what I can from them.

A week from right this moment, I’ll be in surgery. The exchange surgery is an easy one and they’re letting me out of the hospital the same day. I couldn’t be happier to be ending this process and starting my new life. There are lots of amazing things and people on the horizon.

I’m still welcoming help, food, visits, someone to drive me to the grocery store and carry my bags, and help planting the garden for the first week or two of June. If you’re interested, let me know. I’d love to see each and every one of you reading this.

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What’s Next?!

After exactly a month of amazing support and help I’m, again, counting my blessings. I woke up yesterday and remembered something Dr. Smith said to me a few months ago. She told me that for the first three weeks after my surgery I’d be thrilled with how quickly I was healing, and that then for the next three weeks I’d be frustrated that I wasn’t feeling normal yet. Here I am! Exactly where she knew I’d land. Being forced to rest more than I’d like is annoying, but it does give me time everyday to think about how lucky I am to have all of you in my life, which is nice.

Many things about this process have surprised me. I haven’t mourned the loss of my breasts for a single moment. I’m not saying that moment won’t come, but I’m glad it hasn’t yet. There have been other surprises, too. I’ve never had an experience where I’ve felt so happy and so sad at the same time.  I can’t help but imagine what this would have been like if my mom were here. She would have helped me with my research for the past five years, gone to the doctors with me, held my hand after surgery, watched my kids, filled my fridge with delicious food and my heart with love. Luckily, I have all of you. Everyone has picked up some missing pieces and provided me with those things. No one will ever replace her, but my friends and family are doing a damn fine job. Writing this blog has surprised me; It’s been a great exercise in opening myself up. For the most part that has been wonderful but a few times it has totally sucked. It seems that people who bring us the most joy and hope can also bring the most sadness and heartache. But, for each second of regret I have about being too open I have hours where I am simply overcome with my good fortune.

Speaking of good fortune, I’ve had lots of amazing visitors since I last wrote and more to come. Nick flies in on Monday night and we’re going to New York on Tuesday. I have a follow up with Dr. Smith and the second (final!) fill of my expanders on Wednesday. I have lots of questions about the exchange surgery on May 28th- length of hospital stay, will I need a compression garment, when can I drive, when can I lift more than five pounds, when I can I start working out? I want to be able to lift up my kids and hug them, do yard work, plant the garden, do yoga and start swimming in Georgiaville Pond with some of my new friends! So, what’s next? Lot’s of great things. Getting rid of these expanders will be the first great thing on that list- they are not very comfortable!

More next week. Until then, lots of love and thanks.

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Resting

I thought that sitting around being a slacker parent and watching movies would be great. It isn’t. I suck at this. I started sleeping well and actually feeling like myself (forgetting for a few minutes a day about my boobs, how weird my body feels) last week. My pattern now is to, on a day where I wake up and feel good, totally over-do it and then need to take a day or two to recuperate. I am well aware that my body isn’t feeling normal, but my attention span isn’t back to 100% for some reason. My mind keeps wandering. When I sit down to write thank you notes or to start going through work e-mails my focus is divided. I guess that is natures way of telling me to stop trying to do those things for another week or so. Right?! I need some more rest. So….I hope work is being patient with me and that those of you who deserve a Thank You note are too.

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Feeling good and blessed

I got an email from one of my friend’s mom’s. I’ve known this friend since nursery school and now call her mom my friend too. Being around people, and families, from my past that are still intact, still living in the homes where I have memories of growing up is comforting and healing. Her message was so on point with what I hoped and wanted to happen after my surgery that I’m going to share it.

Dear Kristen,  I heard everything went well with your surgery. So happy to hear that!  So now the healing begins and the new girl emerges. The one who is unfettered by the burden shes been carrying.  Who on this journey has learned so much.  About her friends, about her family, about herself.  And the learning doesn’t stop there because there is a deeper understanding of almost everything now.  So proud of how you let yourself be vulnerable even though you’re not comfortable with it.  I love when fear doesn’t stop us.  Wow so proud of you!

Heal fast and get strong and come spend some time with us this summer!

Big hugs ( but not too hard) 😉

Xoxo

I’m inspired by the thoughtful and generous words, gifts, and outpouring of support. You have all changed me and touched my heart deeply. Again, thank you so much.

I’m behind in updating the blog, but have been doing very well. Much better than I expected. I had follow-ups with Dr. Hazen and Dr. Axelrod last week. I’m healing nicely and even had the first fill of my expanders. My mobility is great, better than they or I thought it would be at this point. My right expander is in a slightly bothersome position- a little too high and close to my armpit. It gets swollen and interferes with my ability to fully move that arm. Dr. Hazen said this will not affect the end result, but thinks that I should move along with the process more quickly than I had originally planned.

The second fill of my expanders is May 8 and my exchange surgery (where they swap out the expanders for implants) is May 28. This second surgery is much easier, I should be back up to 100% a few days later. I’ll have more details on that surgery soon!

At my appointment with Dr. Axelrod she asked if I had any regret about having the surgery. I remain 100% behind my decision. I’ve had barely any pain and haven’t felt a single moment of mourning for the loss of my breasts. I am confident that I am in good hands- the gentle, thoughtful, skilled hands of Dr. Hazen- and will be happy with my end results.

I do, however, still mourn the loss of my mother. All of this love and this newfound mental freedom are bittersweet. We are drawn to people for different reasons, bound to some by common experience by an unspoken understanding. Many, too many, of my friends and loved ones have lost a parent and relate to the sadness that I feel. I am working on letting go of my heartache. I sent an email about my mixed feelings- happily counting my blessings and still, with all my good fortune, being sad- to a friend who sent a touching reply. Since I’m in a sharing mood, I’m putting this one out there too:

“You are a walking/living dedication to your Mom. You’re actions are the inevitable embodiment of what she would have wanted for you. By taking the steps you have – you have guaranteed that she, in a very real way, lives on.”

I can only hope that this is true.

Also, I want to thank everyone who has come and helped take care of Liam and Sylvia. They spent almost two weeks with their grandparents, which I can honestly say everyone enjoyed greatly. So many others have helped too- my Aunt Pam, Uncle Chev, Aunt Sheila, cousin Rachel, Lindsay…and more to come. My children are just as lucky as I am. They are especially lucky for their Dad who has been taking extra good care of them while I’m healing (and always). And for their Auntie Megan; I couldn’t ask for a better sister or friend.

And, I owe many additional thanks to those that have taken such good care of me. I am especially thankful to my Aunt Edie for caring for me during the first few days after surgery. I love you so very much.  Nicole, thanks to you for bringing me back from NYC to Providence. I am so lucky to have you in my life. And, I’m grateful to Abby for hosting me so many times during trips to the city, bringing me to the hospital, driving me back to New York for my follow-ups and being a constant source of support. And Michael, thank you for swooping into my life and quickly becoming a friend who likes driving me around and offers a fresh and joyful perspective on my situation. And lastly, thank you to Chris for generously letting me recuperate in the extra bedroom in his apartment (the one above mine). I appreciate the quiet place to rest and your friendship.

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I’m back!

A week ago right now,  I was high as a kite and feeling great. I came out of surgery with very little pain, my nipples intact and the weight of an elephant lifted off my chest. Obviously that is a a metaphor, since my breasts weighted about as much as a handful of…I dunno…something light, cotton balls? I don’t know the words to express how good it felt to be on the other side of surgery. I am ever so thankful to the amazing staff at Tisch- to Dr. Axelrod (who even held my hand before surgery), Dr. Hazen, Jenny and Marina, and everyone else there who helped me through this.

I don’t have too much energy yet, but wanted to put a post up because I’ve been getting hundreds of hits a day and feel delightfully obligated to update you on how well I’m doing. Quite honestly, I’m not sure that I could be better. I got the news today that the pathology came back clean. Another great weight has been lifted.

The outpouring of love and support that I’ve gotten has touched me deeply. It has also motivated me to give back. I’m not sure how I’ll ever manage to do for all of you what you’ve done for me, but trust that I’ll be trying my best. I have so much more mental space now that new ideas and goals for the future fly through at a mile a minute. I’m resting my body and letting my mind wander. Here’s to a bright future.

 

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Nipples, Nipples, Nipples

Thanks to those of you who requested (or that I requested) read some of the articles about nipple sparing mastectomies, most especially Lindsay. Dr. Girlfriend, you’re the best. Obviously my biggest concern was if keeping my nipples greatly increased my risk of developing cancer in the future, which does not seem to be the case.  After reading the most recent article (listed in a previous post) that reported a 13% rate of tissue necrosis, that became my number two concern.

Tissue necrosis is a risk because removing all the tissue from behind the nipple leaves limited blood supply to the area. 13% seemed high. Right?! So, I emailed Dr. Axelrod and requested that she share her numbers- her success rate with this type of procedure, how many nipple sparing mastectomies she’s done, how long she’s been doing them, etc. Dr. Axelrod’s rate for tissue necrosis is closer to 3%. She said that she is very selective about who she offers this to as an option- small breasted women having preventative mastectomies. The article included women who had cancer, some who even had pre-surgical radiation, which would greatly affect healing.

This morning I spoke with Dr. Hazen (the plastic surgeon) about her thoughts on if I should keep my nipples. She reiterated that the results would be much better, cosmetically speaking, and that the process is easier psychologically because it doesn’t feel like as much of a loss. We concluded our conversation by deciding that if when they’re operating they think they’ll have good luck saving them, than they will. So, when I wake up from surgery I’ll find out if I have them or not. Surprise! I know I’ll be ok no matter what, so I’m leaving it up to the professionals. I’m glad to not have to think about it anymore.

I’ll be in New York soon, and believe the surgery is early tomorrow morning. I’ll find out the exact timing shortly. Dr. Axelrod will remove my breast tissue, and maybe my nipples. Then Dr. Hazen will place tissue expanders and stitch me up. And then, because I am so very fortunate, two of my brother’s dear friends who are nurses at NYU will be there to check in on me. Seriously, what luck! Marina and Jenny, thank you. Having some friendly faces on staff puts my (and my family’s) mind at ease.

Alright, that’s all for now! You’ll be hearing from post-surgical me very soon. I’m going in feeling great about my choice, with a light and happy heart, and feeling very supported.

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