On the whole, I’m doing well. Some of my healing is going entirely smoothly and even ahead of schedule – my incisions, for example. Yesterday, I went to the breast surgeon who presented all of the pathology. As I said, there was no cancer, but tremendous amount of flat epithelial atypia and hyperplasia in both breasts. She took two sentinel nodes from the left side, where the LCIS was discovered. One was a simple biopsy and the other was a dissection, and both were negative. I learned that my chance of developing any breast cancer in the future is less than 5 percent. I will no longer have any kind of mammogram as, in the words of Dr. Magnant (LOVE her!), there is “no mamm to gram.” She will check me thoroughly every six months and will order any imaging or request any biopsy that she deems necessary (very unlikely). She, again, reassured me that I’d made all the right choices and was also sweet in telling us that she thought Geoff and I made a great match.
What is a bit behind schedule is my drains. Typically, the second set would have come out today when I saw Dr. Kulkarni. In her words, though, I am “juicy.” Too much drainage. One of the ways to slow down the production is to “pump me up,” or fill the expanders more. Not sure why this has that effect, but it does. So, I had 100 ccs; of saline added to each expander. This also helped to fill in some of the places that were more concave. They use magnets to do this, as there is a metal magnet in the expander itself to help guide them as to where to put the needle. They use a very large scary looking needle, but because I am nearly numb do to the nerve damage from the surgery, I felt very little. Now, I am uncomfortable, but truthfully, I’ve been quite uncomfortable since after the surgery. Expanders have been likened to wearing an iron bra around a heavy pair of coconuts. It’s a pretty good analogy. I will likely need one more fill to fully round things out and slow down the drainage. Truthfully, I’m already as large as I’d like to be, and I’m hoping that once the implants are placed, I’ll end up a cup size smaller than I originally was. In the meanwhile, if you were to see me, you’d likely not notice anything terribly different from how you’re used to seeing me as I hide my drains in my clothing in all kinds of creative ways. One of the ways is that I have a bra that has little pockets that hang down. Geoff’s “joke” is that once the drains come out, I should keep the pockets and use them to hold snacks.
A big challenge is not loading and unloading the dishwasher, cooking, bringing out trash, doing laundry, etc. It’s not so much that I like these tasks, but I like having them done, and moving my arms a lot causes drainage. So the goal is under 30 cc’s of drainage over 24 hours. As soon as that happens, they can come out. My hope is that I’ll be able to have them removed on Friday. That means, little arm movement between now and Friday. And Tuesday will be my final fill. Then I’ll need to wait 8 weeks for the exchange surgery (expanders removed and implants placed), which will happen in the hospital, but will be an out-patient procedure. There is one complicating factor, which I just discovered today. My wonderful plastic surgeon, Dr. Anita Kulkarni, is moving on to a different (nearby) practice. She will be moving on August 18th, before my exchange surgery. I am very much hoping to follow her. She has, of course, not solicited me. That is my choice. She has reapplied to be credentialed/accepted by my insurance as an in-network doctor as she has been, but there’s no guarantee she’ll be accepted or that that will happen according to my time frame. My fingers are crossed. Please cross yours too. If not, I could still use her (out of network) or one of the other docs in her current office (but they’re out of network too). We’ve fully met our in network yearly out of pocket max (by miles) this year, and so if she’s approved, my entire surgery will be paid for. If not, though, we’ve not even met our out of network deductible (not to mention out of pocket maximum) so the financial responsibility for the exchange surgery would be entirely ours. Trying not to worry. I can’t really start the research yet, as it hasn’t been announced (to me or the world) exactly where she’s moving – though she’s promised it’s local. So . . . a bump (hopefully small) in the road – smaller certainly than any health complication or than cancer for sure. Money issues are real, but we’ll find a way to manage them if need be.
So, all in all, things are moving along. I’m healing. I’m grateful. I’m also very uncomfortable and a little frustrated. All those things can be simultaneously true.
The presents, the flowers, the visits, the cards, the meals . . . I love them and I love you all more than I can say. I love your check-ins, and I’m grateful for anything you provide and any time you have to come spend with me. I so loved and appreciated having my parents here, the time that Geoff can be home with me now, and Geoff’s mom’s upcoming visit too.
My love and gratitude always!
Emily Weber - Journal
Read Entries & Updates
So there have been some little glitches with washing hair and twisting my knee a little and one little area that’s not healing perfectly (should be ok). I’m still quite uncomfortable, but . . . none of it matters. What matters is I DON’T HAVE CANCER. I am a PREVIVOR. The breast surgeon called to say that there were many, many areas of abnormal tissue and that I was a “ticking time bomb” (my words). She said that cancer was just waiting to happen, and I got it in time and shouldn’t doubt any part of my decision for a second. SO many tears of joy and relief. I’m proud that I followed the harder but more forward-looking path!
THANK YOU FRIENDS AND FAMILY NEAR AND FAR. The cards. The packages. The flowers. The emails. The Facebook posts. The phone calls. I do need to send one particular shout out to my new friend, Kristine, who lives in New Jersey. She saw a post I wrote on a Prophylactic Mastectomy group on Facebook describing my LCIS diagnosis. It’s not so common, and she, too, has this diagnosis. She reached out to me, and we’ve become close offering for each other a sounding board, an opinion, support, encouragement, etc. Today, she sent me a package filled with the most special and beautiful care package. I am astonished how, again and again, blessings come from struggle. Kristine and all of you are true blessings to me.
I still have a ways to go and some hurdles to jump through. The tissue expanders that have to stay in me for a few months before the actual implants can be placed are painful and there’s still risk of infection. I’m doing everything I’m told to make that unlikely and will have to work on developing a higher threshold for discomfort than I’ve had in the past. I was sent a lovely quote -- “The comeback is always stronger than the setback.” That’s the plan.
On another note, for those who are able, I’m eager for short visits and outings and celebrations (more energy each day), so feel free to let me know if you’d like to come by.
All my love!
Sunday (I’m told)
Each day kind of blends together when one is either a parent of a newborn or is a patient recovering from surgery. My sleeping/resting to being awake ratio seems to be at least 3:1. Sometimes, the sleep is of a deep nature, but more often I’ve one foot in the door, the other one out – out far enough that I can answer my mom’s question about how often the flowers on the deck should be watered or how much cheese goes in the lentil casserole.
On all accounts, I’m doing quite well. The pain I have is quite tolerable – mostly rubbing or pulling – related to the drains. I’m allowed to take two oxycodone tablets every 4-6 hours and have taken only one total today and am allowed to take two Valium pills every 6 hours and I’ve taken none today. If things proceed as they are, I will be off narcotics and muscle relaxers and back to good ol’ Tylenol again very soon.
The doctor called the first two-three weeks post surgery, the putzing stage. I’m definitely putzing. Putzing to the bathroom, putzing clearing light items from the dish dryer, putzing around in circles around my courtyard and even climbing the stairs and changing my clothes tonight. Clean (or at least clean-er) feels great. On Tuesday, I will see Dr. Kulkarni to make sure things are healing on that front and I’m waiting on bated breath for Thursday to hear from Dr. Magnant (prayers please) that there are no errant cancer cells.
I am grateful for what seems a very on track recovery and believe strongly that all the kindness and expertise that surrounded me in the hospital went a long way. I’ve no complaints about the service here at home either: homemade eggplant parmesan, homemade pesto, lentil rice casserole, the best asparagus egg asserole, and scones to surpass no other. Thank you also to all the dear friends who have brought/sent me something: Andy and Janice, Gordon and Farrah, Judy and Kate, Nicole and Jackson, Hope and Bob, my fellow learning specialists, Linda and Klyde, Jessica, Lucia, Cheryl, Cliff and Barb, Mary Alice, Robin, Linda and Bill, Andrea, Jeannie and Pat, and Carolyn. Beautiful, heartfelt cards too![...]
I am happy to report that Emily was discharged from the hospital this afternoon. While in some pain, Em has managed very well and was able to sit down for dinner this evening with me, Ellen, and Vic. She is sleeping comfortably now, and we are having a nurse stay overnight to assist with Emily's care. I have attached a photo of Emily in her recliner at home. Emily will be going for follow-up appointments this week with the breast surgeon and plastic surgeon. We appreciate all of your continued support![...]
I am happy to report that Emily is out of surgery. Surgery was completed in less than 2.5 hours, and both the breast surgeon and plastic surgeon said that all went well. Emily's team of doctors and nurses are extremely kind and helpful, and Emily is resting comfortably in a spacious, private room at Sibley Memorial in D.C. While in some pain, Emily said that it is manageable. Em and I will be staying overnight at the hospital, and it is expected that she will be allowed to go home sometime tomorrow afternoon. Thanks everyone for your continued support! We love you.[...]
It’s the night before surgery and I’m actually pretty calm. Although this is not something I want to do (particularly on our anniversary!), I’m confident that it’s the right thing. I’ve chosen excellent doctors and have been working hard to get in a good mindset. If anyone ever needs an excellent mediation before surgery CD, let me know (hopefully not). Anyway, the biggest thing – truly – that’s given me confidence and that I’ve got going for me is the support of my family and friends . . . near and far. My gratitude for the well wishes and the love abounds. I know it won’t be easy, but it’ll be just a little bit easier because of YOU! I look forward to being on the other side – hopefully cancer free and with lots of healthy years ahead to enjoy my life and all of you. Lots of love! Emily[...]
As many of you already know, Emily was diagnosed with Lobular carcinoma in situ (LCIS) several months ago following a routine mammogram. LCIS is an area of abnormal cell growth that increases a person's risk of developing invasive breast cancer later on in life. After consulting with a host of medical specialists, Emily has opted for a bilateral mastectomy followed by reconstruction. Although reaching this decision was difficult, Emily felt that this procedure gave her the best chance to live a cancer free life in the future. Emily's surgery is scheduled to take place at Sibley Memorial Hospital in Washington, D.C. on Wednesday, June 13th. Following a one night stay in the hospital, Emily will begin her recovery process at home. Updates related to Emily's surgery and recovery process will be posted to this site. You can also use the site to send Emily your thoughts and well wishes which she would truly appreciate. [...]