Thanks for the Mammaries!

Today is Day 4 post-op and I'm finally feeling coherent enough to sit at the computer! (Thank you, Hydrocodone).

Last Thursday was the big day of my double mastectomy. I went to the hospital Wednesday afternoon to have radioactive dye injected into my left breast so that they could find my sentinel lymph nodes for biopsy the next day. The PA who did the procedure was very nice and professional, and explained everything well. He told me that the three injections would "pinch and burn", like a bee sting. OK, I thought, no big deal. I've had a lot of needles lately so this would be no problem. I laid back on the table and he prepped the skin with some antiseptic and then proceeded to INJECT MY BREAST WITH BATTERY ACID. Let me just say that never in my life have I screamed a profanity in a doctor's office (and I've been through some stuff), and as the first needle hit me, I screamed out, "OWWWW!!! F@CK!!!!!" It was indescribably painful, and it didn't stop when the needle came out - it continued to hurt more. Let's just say they pinned me down and got me through the other two injections, but it wasn't pretty. Now I understand why my patients sometimes want to bite me.

Thursday morning, I had to be at the hospital at 9am for an 11:30am surgery time. I kissed Ashlyn goodbye at the breakfast table but Shayla was still happily snoozing when Kevin and I left at about 8am. I started out the day at the hospital in Nuclear Medicine for a scan of my lymph nodes. They were able to successfully locate my sentinel node, which was great. They marked my skin for the surgeon and then moved me to the pre-op waiting area, and I was quickly brought back to a bed in the ward. I changed into a gown and snuggled under the warm blankets the wonderful nurse brought me when she noticed me shivering. She started my IV and then the waiting began. Various people stopped by - my breast surgeon, Dr. Weber, came in to review the plan, and the anesthesiologist came in to introduce herself. Dr. Gannon wouldn't be at the hospital until later to do the reconstruction portion of the surgery at the end. My sister came to the hospital to wait with Kevin during my surgery so she sat with us and helped keep me laughing. I wasn't feeling terribly nervous, just sick of all the waiting and very much wanting things to get underway. At around 11:45am, the anesthesiologist came to bring me to the OR. She put some lovely Versed in my IV and told me I would have no memory of what was happening in a few seconds. I hugged and kissed my husband and sister and as they started to wheel me away, I waved to my boobs and loudly announced, "Thanks for the mammaries!", which is an old joke in our family. The doctor cracked up and then I don't remember anything after that (although apparently I moved myself onto the surgery table - freaky).

I woke up in the recovery suite, and couldn't open my eyes yet but could hear some very serious stuff happening around me - nurses discussing the old lady in the bed next to me that had multiple pelvic fractures and apparently wasn't doing well, and some other complicated-sounding cases. Someone kept telling me to breathe, which seemed weird because I thought I WAS breathing. I guess they'd given me IV Fentanyl, a powerful narcotic pain medication that suppresses your respiratory drive and was making me forget to breathe. At some point I became more coherent and was moved to a double room upstairs, which bummed me out because I wanted Kevin to be able to stay overnight with me. Shortly after they got me settled, Kevin and Jess came in. I immediately asked Kevin if I was able to get the implants put in, which Dr. Gannon had told me was 90% likely to happen. I had my heart set on getting those implants right away. Kevin gave me the very upsetting news that they were unable to fit the implants and so I had tissue expanders placed instead. Dr. Weber had to take some skin around the tumor to feel like she was getting clean margins, and that left too little skin behind to close over the implants. It felt like a huge deal at the time, as it now meant I'd have to go back and forth to the plastic surgeon's office weekly for awhile to get the implants slowly inflated with saline, and the expanders are more uncomfortable, and then of course I'd need a second surgery to have the implants placed later. But now I've realized this isn't a huge deal in the big scheme of things we're going through. Of course the most important thing was to get the cancer taken out completely. Sometimes you just get your hopes up that ONE THING will go the way you want it to during this mess, and it can be so disappointing when that doesn't happen. It also feels lousy to be in the small losing percentage of a situation because it makes you think about being in that small percentage when it comes to other things, like your prognosis. But, we'll get though this reconstruction and it will be fine.

I ate a disgusting cold hamburger from the closing hospital cafeteria that evening and hung out with Kevin and Jess for a couple of hours. My sister asked again if there was a single room opening, and the nurse told us they were just cleaning one, so I was moved over and Kevin, the lucky dog, was able to sleep in an exquisitely uncomfortable chair next to me that night. We had a long series of obscenely beautiful, sweet nurses and often clueless techs taking care of me. I was switched to oral Hydrocodone and antibiotics that evening, and actually slept well except for being awoken every 4 hours for vitals. The next morning, I woke up to my doctors coming in to check on me and explaining how things went. I ate some breakfast, got cleaned up, and got my discharge instructions, and by 11am I was being wheeled down to the lobby. The ride home was a little uncomfortable when we went over bumps, but overall not bad.

I came home and gave Shayla and my parents a huge (gentle) squeeze, but Ashlyn was still at school. I walked directly to the couch to snuggle with my pillow and blanket, and that's mostly where I've been the past four days. A lot of family has stopped by to visit, which has been great. I can get up to do small things, but am mostly just feeling wiped out. I've been able to sleep up in bed, which is great, because I thought I'd have to sleep slightly upright in a recliner for awhile. Today when I woke up the pain felt much better, so I decided to taper off the pain meds and I also took my first glorious shower. I was able to look at the new appearance of my chest without feeling too much angst. I think I had plenty of time to mentally prepare myself for surgery, and it really doesn't look too bad, just... flat. And we'll fix that.

My mom and stepdad have been taking awesome care of the girls and me, and the house has been running smoothly despite my inability to do much. Ashlyn and Shayla seem to be handling everything fine so far, I just have to keep reminding them that they have to be gentle to Mommy's "boo-boo chest," and they get a bit upset when I have to be on the couch instead of playing with them or putting them to bed. Kevin feels much better knowing the cancer is out of me. Now we just have to wait for the biopsy report in the next few days to find out what the official size of the tumor was, and if there was any spread to the lymph nodes. Next week is my visit to the oncologist to review all of the latest information and come up with the final chemo plan, which will probably start in 3-4 weeks. I'm scheduled to return to work on May 16th as long as that's not going to be a weekend I'm sick from chemo (my summer will basically alternate between weekends at work, and weekends with chemo - I'm really looking forward to that, haha).

I'm feeling good that this will all be behind us soon. First step to kicking cancer's butt: COMPLETE!

 

The morning after surgery in the hospital. We've got this! 

 

 Kevin and Ashlyn on their way to see "Beauty and    My mom (Gran) snuggling Shayla.
the Beast" on Sunday afternoon.

Wigging Out

Yesterday was my appointment at the local wig salon. The consultant was awesome and it was fun trying on the different wigs. Most of them had crazy layers that tried to fall in my face, and since I'm mostly going to wear my wig to work, that wasn't cool. I was also worried that one of the longer styles would be hot in summer, and get tangled in my stethoscope. I ended up choosing one that's a sleek chin-length bob with bangs. My own hair is too crazy to ever tame into this style, so it's kind of fun to be able to rock this look for a few months! I ordered this wig but in my own blonde color (aka "Spring Honey", haha):

 

 

I feel much better having checked this task off the list. Stay tuned for the awesome pixie-punk look I'm going to have this fall when my hair starts to grow back. I think I'll dye it neon pink.

 

My car decided to break down this morning on the way to bring Shayla to daycare, so now I'm waiting for the tow truck to come and bring it to the dealership for me. Great timing, right? I swear, you can't make this stuff up. The brand-new litterbox I just bought for my cats has also decided to leak urine all over my laundry room floor. Seriously... you just have to laugh.

 

I'm excited to see my mom and stepdad today, and get geared up for the big surgery day tomorrow! It will feel so good to be free of my killer boobies... if you had told me it would take an entire month to get anything done to address this aggressive cancer, I would've never believed you. I'm so glad it's finally happening. Thanks so much, everyone, for all the encouragement and prayers you've been sending my way. I am one lucky girl to be surrounded by so much love!

 

Doing the Happy Ovary Dance

Today I went for the scariest medical test of my life: an ultrasound of my ovaries to look for ovarian cancer. It's one thing to have cancer somewhere that you can touch and feel, and another thing entirely to worry about what's lurking inside the depths of your abdomen, and await imaging studies to tell you if you're okay, or seriously not okay. Although it would be extremely unlikely to have BOTH breast and ovarian cancer at the same time, I had an insanely strong feeling that, because I have this BRCA mutation, I would have an ovarian tumor. It was really just a done deal in my mind. I was preparing myself for it so that I wouldn't pass out when they told me.

The ultrasound was done right in my OB's office. It was pretty fast, and while I was trying to peek at the screen, it was turned so that I couldn't quite see.  At the end, I asked the ultrasound tech to please see if my midwife, Lisa, could get the doctor to interpret my images now instead of calling me later on today. I felt like I couldn't breathe as we waited for about 15 minutes to see if that could happen. Thankfully, Lisa was able to do this for me, and came out to the waiting room smiling from ear to ear. She brought us into an exam room and told us that the ultrasound of my uterus and ovaries was completely normal, and my CA-125 test, which is a blood test used to detect ovarian cancer, was also normal. Between these two results she felt very good that I did not have ovarian cancer, but reiterated that once my breast cancer surgery/treatment is completely done, I should have my ovaries removed prophylactically. Apparently this surgery is laparascopic and the recovery is pretty easy, and I do not ever want to have cancer again, so I will be planning to do that this fall. I'm not super excited about early menopause, but hey, maybe I'd stop being so gosh darn cold all the time!

Tomorrow I have an appointment at a wig store to try on wigs. While we were out today, Kevin and I tried to check out another wig place that came up on a Google search. It was down in a very urban part of Albany, but I didn't think twice about the address until we got there. Let's just say, they didn't have any straight blonde wigs there. I hope we have better luck tomorrow!

My surgery is scheduled for Thursday, so I'm trying to rest, eat well, and prepare for being out of commission for a little while by getting the laundry and house in order. My mom and stepdad will arrive on Wednesday to help us out. I just can't wait to get this thing out of me that seems to be growing every day. Now that I know this is my only problem, I know I can do what I need to do to get it out, get through the chemo, get spayed, and move on with life. The continuous stream of letters, flowers, gifts and messages of encouragement and love has been just amazing. I am so lucky to be so loved.

The weather here today is gorgeous - sunny and 77 degrees. I can't wait to go get the girls from daycare and take them out for a nice walk before dinner!

I'm Practically Angelina Jolie

You get to a point where you just think, Really? How much more could possibly go wrong here?

Yesterday was Monday. I woke up expecting to get a phone call telling me that my double mastectomy/reconstruction would be happening either that Tuesday or Wednesday. Instead, I got a call that the two surgeons were both incredibly busy and that the soonest they could get together to get me to surgery was NEXT THURSDAY, April 16th. Next. Freaking. Thursday. I panicked. I freaked out. It wasn't pretty. I called the surgical schedulers for both doctors, basically crying and begging them to help me get this done this week. They were very nice and very sorry, but there was just no way they could make this happen sooner. Nope. Not gonna happen.

So, my mom and stepdad left to go back to Cape Cod today, and will return next Wednesday as I prepare to actually go have my surgery. They'll stay with me for a few days to help out after surgery and stay with the girls while we're in the hospital for the overnight on Thursday. I'm extremely upset that they have to leave and come back, but very grateful that they're being awesome about doing anything and everything we need right now.

After they left, Ashlyn was just hanging out with me on the couch and I called Kevin into the room. Shayla was at daycare and the house was quiet. All of a sudden, at that moment, it seemed like it was time to talk to Ashlyn about what was going on. I've been reading about how to talk about this honestly so kids understand without knowing too much. She's such a smart kid and I know all of our whispering and worrying must be getting through to her somehow. I told her that I had a boo-boo in my breast and it has a scary name -- cancer. But this cancer was very, very tiny and I was going to have an operation to get it taken out. Then I would have some special medicine to make sure all of the cancer was completely gone. This medicine would do something silly - it would make my hair fall out. We talked about Mommy wearing some pretty hats, scarves and wigs for awhile and giggled about Ashlyn helping me pick out what to wear and maybe putting some temporary tattoos on my head to make it pretty. We talked about the fact that the surgery would make my chest very sore for awhile, and the chemo would make me have times when I was very tired and needed to rest by myself. Daddy and our other friends and family would be here to help out when Mommy wasn't feeling well, so she and Shayla would still get to do all their normal things and have lots of fun this summer. I told her that it's okay to cry and be sad, that Mommy was sad too, but that we would all be strong and brave and get through this together. I reassured her that I was NOT going to die and that all my doctors said I'm going to be completely fine. She cried and hugged me for a few minutes and then we were getting ready to go to the park and she was fine. I'm sure this topic will come up many more times, but for now, it seems like she's going to be very resilient about this and handle it well. I was extremely shocked that I managed to get through this conversation without crying, but somehow I did, and I think that helped her to feel like it was going to be okay.

I spent the day today with Ashlyn, going to the playground and trying to just relax. When we got home from picking up Shayla, Kevin had the phone in his hand and told me the genetic counselor from Dana Farber was on the phone. I went upstairs to talk with her and she told me what I had already somehow known - that I have a BRCA-1 mutation. I'm what they call "BRCA positive", exactly like Angelina Jolie, who just recently had her breasts and ovaries removed for this same reason. This means that I have a mutation in the gene that protects me from getting breast and ovarian cancer. Now I not only need the double mastectomy that I had already decided to have, but at some point in the near future, I will also need my ovaries removed because I have a very high risk of also developing ovarian cancer. I've been having (what I hope are irrational) fears in the last few days that I have an ovarian tumor already, so I immediately contacted my OB office and told them I wanted an ovarian ultrasound ASAP. They were able to schedule that for next Monday. So now, we wait and hope and pray that my ovaries are normal and this once again goes back to "just" the one original breast tumor.

Because I have this gene, my sister and mom also need to be screened for this. There is also a 50/50 chance that each of my girls has it as well - they either got the bad gene from me, or the good gene from Kevin. As a parent, there is nothing worse than thinking that you could have something bad that you've passed onto your kids. All you want is to give them the very best of you -- not something so incredibly harmful and painful. If they have the bad gene, they could need prophylactic surgeries when they become adults. Maybe in 20 years when this would impact them, there will be better technology. We can only hope.

Now I continue to wait. I'm taking this next week off from work until I have surgery just to try to get mentally and physically ready for surgery, and spend extra time with the girls. I just feel too stressed and distracted to be effective as a doctor right now.

The outpouring of love and support we're receiving has been incredible. Thank you to all of you who are following my story and praying for me!

 

At the park today with my 5-year-old beauty, Ashlyn, after telling her about Mommy's cancer.

Kids are so incredibly resilient!

Moving Forward... Finally

The past couple of days since my tests and biopsies have been agony. Just waiting for something to happen while I have a deadly tumor (tumors??!) inside me has put me into a state of permanent panic attack. I feel like there is a black widow spider sitting on my chest, and there is a team of doctors just sitting around me, casually assuring me that it won't bite. Telling me to just relax, that it takes time to deal with these things properly. I'm flailing around, doing the icky-icky dance, and nobody will get this damn thing off of me.

Finally this morning my surgeon, Dr. Weber, called me with the results of the new biopsies. The larger area turned out to just be a benign fibroadenoma, so totally fine. The smaller area was pre-cancerous "atypical" cells, so not cancer, but could become cancer over time (not cool). The surgeon told me that they could remove the small new area along with the original tumor, and I told her that this recent scare that I have multiple tumors has really made me terrified and that I was thinking about just going for a full double mastectomy. She said that was definitely an option, but that we'd then have to coordinate the surgery with the plastic surgeon and that may not be a quick process. I had already set up a consult for this afternoon with Dr. Gannon, the plastic surgeon whom I'd been seeing for treatment of my silly spider veins... she just so happens to be *the* breast reconstruction surgeon in the area. Dr. Weber said that if I spoke with Dr. Gannon and she felt she could make this happen on Tuesday, my original surgery day, then this could all happen next week. It becomes a bit complicated to get the necessary OR time, as well as two busy surgeons, all put together in such a short period of time. I had a feeling there would be more nightmarish waiting in my future, but I was ready to get down on my knees and beg Dr. Gannon to help me if I had to.

My consult with Dr. Gannon was wonderful. She told me she thought I was making the best choice and that she thought I would have a very cosmetic outcome after reconstruction. She said that the recovery can be up to 4 weeks and would be pretty painful, and that most women cry afterwards when it becomes real that they've lost their nipples and all sensation in their breasts. This really hit me... losing a part of my body would not be easy, but I am so filled with terror that I'm going to get more cancer, that I just need them gone. Even just the thought of going every 6 months for endless MRIs, mammograms, ultrasounds.... having every little spot being jabbed with a needle, then waiting for results... I can't do it. I told her that I really like my boobs, but that I was not willing to die for them. She assured me that she would get ahold of Dr. Weber and figure out a way to get the surgery scheduled for next Tuesday, or maybe Wednesday if things had to be juggled around a bit. I was so grateful that she was willing to make this happen so quickly for me! I felt giddy that after all this waiting, we were finally going to do something about this very soon. I drove home thinking, "Is it weird that I'm so excited to get my boobs cut off?".

So I didn't hear back about a definite plan this evening since it was Friday at 4:30 when I left her office, but Dr. Gannon's secretary assured me that if not tonight, I'd get a call Monday morning with a final plan. My mom and stepdad are planning to come to town tomorrow and stay through most of next week to help me out, which is huge. I am so, so lucky to have family and friends who are sticking by my through all this.

I'm still trying to figure out how to talk to Ashlyn about this. I just know it's going to terrify her no matter how hard I try to make it sound like no big deal. She is so sensitive and so attached to me. Even just being gone for an overnight for my surgery is going to stress her out. I'll have to keep thinking and reading about this.

So now I'm going to try to relax and enjoy Easter weekend as much as possible. My girlies were so cute tonight at our neighborhood Easter Egg Hunt. They are so worth all this pain I will have to get through to be here for them!

Introduction

My story begins on January 7, 2015 when I felt a small lump in my left breast in the shower. I called my OB immediately and made an appointment for the next day. She examined me and said it was probably just a cyst and not to be worried, but she wanted me to have an ultrasound. That couldn't be scheduled for 3 weeks so I waited anxiously and tried to put it out of my mind. The ultrasound was nerve-wracking, but at the end of the scan, the young woman radiologist came into the dimly lit room and told me my 8mm mass was perfectly smooth and round, and did NOT look like cancer. She was able to say with 98% certainty that this was just a benign fibroadenoma, and said she could not even recommend a biopsy. Well, I was freaked out having this thing in my boob that I knew I would feel and obsess over every day and wanted to know for sure that it was nothing to worry about, so I asked my OB to schedule me for a biopsy. Again, that took weeks to schedule but this time I was feeling less worried since the radiologist felt so confident it was nothing.

My biopsy was on March 13th. My husband came along with me but was not allowed in the room. A great team of nice nurses and doctors held my hand and made me laugh and chat through the whole thing. It was no sweat, and I left feeling sure that I'd get a call with a benign biopsy in a few days and move on with my life.

On March 17th, my family went out to dinner for St. Patrick's day and got home around 8pm. We were late getting the girls home and into bed so I was already feeling frazzled when the phone rang and I saw my midwife's name on the caller ID. Uh-oh. That was bad. Lisa was calling me late at night... my stomach clenched. I let Kevin take the girls upstairs to start bedtime and went to my bedroom and shut the door. Lisa was using her gentle "bad news" voice that I'd unfortunately heard 4 years prior when she had to tell me my 26-week pregnancy had become non-viable. I heard her say the words "cancer" and "invasive ductal carcinoma, grade 3" and I fell to my knees on the bedroom floor. I could hear and feel my heart pounding out of my chest and the room was spinning. This couldn't be happening. I have two beautiful little girls. I was filled with shock and disbelief. 

The next couple of days were spent just reeling from this news and trying to figure out what to do. I was able to get in touch with an oncologist who is friends with my boss, and she told me I'd be okay but that it would be best to go to a big cancer center like Dana Farber to get the best game plan from the start. We managed to get an appointment with the team there for the following Thursday. I was also set up with an appointment with a local breast surgeon for that Friday, 3 days away. It felt like an eternity waiting to talk to a doctor about the next steps. Kevin and I spent a lot of time reading online and most of it just freaked us out more. I also received the news a couple of days later that my tumor was "Triple Negative", which means the cancer cells lack hormone receptors that make it amenable to certain treatments. This type of cancer is more aggressive and likely to spread and recur. That news was also devastating and the initial feelings of horror came rushing back.

The meeting with the surgeon went well. She thought I should have a lumpectomy with sentinel node biopsy, then chemo and radiation. We set up surgery for about 2 1/2 weeks away, which again felt like an eternity, but it felt good to have a plan. 

The next Thursday we went to Dana Farber in Boston and met with a whole team of specialists. They agreed with my surgeon's plan and talked to me more about specifics of the chemo and radiation I would need. The 3 doctors there all assured me I would beat this and be completely fine, which brought tears to my eyes each time they said it. I was going to do whatever these doctors said I needed to do to get better and be there for my girls. While I was at Dana Farber, I also met with a genetic counselor who talked to me about my family history. We decided that I needed to have the breast cancer (BRCA) gene testing, as a young woman with Triple Negative cancer, but based on my family history of some other cancers as well, she offered me a bigger genetic cancer gene panel. I agreed to do it all - I wanted to know what my risk was of having this happen again, and what genes I may have passed onto my girls. The BRCA test would take 2 weeks to come back, and the rest would take about 4 weeks. I left there feeling much better after they told me I'd be okay. I was going to get through this.

The next Tuesday (yesterday), the local breast surgeon sent me to the hospital to have some more thorough breast imaging done. They told me that 10% of women diagnosed with breast cancer will also have a second tumor in one of her breasts. I had a full ultrasound, breast MRI and mammogram. I was horrified when the radiologist found 2 more spots in the same left breast that looked similar to my tumor. He said they could be nothing, but that he was concerned. He biopsied both of them after a long day of scary and painful tests, and I left the hospital once again feeling broken and full of despair. I might have MORE CANCER?!? You've gotta be kidding me. Every time I felt like this was going to be okay, I got more bad news and started back at ground zero emotionally.

So now I'm healing from the biopsy and feeling terrified, waiting to talk to the surgeon about the biopsy results in the next day or two. If there are more cancerous tumors, I will need a full mastectomy of that breast. My BRCA testing will still be pending for another week, which is frustrating, because if that is positive, I would need a double mastectomy to prevent another future cancer anyways. I am starting to think, after how scary and painful all that testing was yesterday, that I may just want both breasts removed. That would be a much bigger surgery, but when the healing was over, I would go through chemo and then not have to go through radiation or any future breast monitoring. I don't know... it's so hard to make decisions without all the information laid out before me. Waiting is agony. 

I know that I'm going to get through this, but it would be really nice to know when, where and how. The plan will be solidified in the next few days so all I can do is try to hang on. I am so lucky to have the support of my awesome family and so many wonderful friends in this process. My husband is my rock and I couldn't do this without him, and my girls are my main motivation. They need me here, and this is where I'm going to be till I'm good and old. You're stuck with me, world!

With my family in November 2014. I've started to think of this time as "Before Cancer". 

These bonds will not be broken and we will get back to this normalcy again.