Ripples

J, my (nearly) 3 year old is a very smart child (aren't everyone's children "geniuses"?). Like a lot of children, he's very aware of the emotional states of those around him, but he's (un)lucky enough to have had a lot of practice in verbalizing them--a pro and con of having a therapist parent, I suppose. At any rate, today he got a small cut on his pinky toe. He cried and cried! It seemed a bit much for the size of the owie, to be quite honest. We fixed it up with a band-aid, provided cuddles and kisses, distraction--nothing worked. Finally, I sat with him in the chair and we quietly rocked. After some time, J who was still sobbing, looked at me and pleaded, "Please don't cut off my owie!" Confused, I attempted to console him and let him know that's not how we fix owies...and then we both looked at my chest.

"Are you thinking about how we cut out Mommy's owie?"

"Uh-huh" came the stuttering reply.

We had a big conversation about how Mommy's owies are different than J's owies. I reminded him that I had cancer--which is different than his owie. We talked about how Moms and Dads fix their children's owies and that we didn't need to "cut" anything off of him.

It dawned on me after this conversation...the cancer may be out of my body, but it's still in my life. Even as I sit here, three weeks post-op, with a drain still in and still struggling to heal my blisters. It's a part of my life and worse, it remains a part of my children's lives. It's a reminder that although I'm a "professional" and I know how to deal with trauma, I'm still just a Mom, trying to help her children make sense of a really, awfully shitty situation.

The big update

So...I am a total jerk and left you all waiting for this update. Sorry.

The smile of a long-winded jerk with big news.

We had our follow up with the surgical oncologist (Dr. Tuttle) & his entourage (Susan--Dr. Tuttle's RN, the head surgeon, Dr. S and a surgical resident, Dr. Elliot) all of which participated in my surgery from the oncology standpoint (I meet with the plastic surgeon next week). Dr. Elliot followed me in the hospital and he and I went several rounds in regards to my pain management. He lacked empathy and I flat-out told him so. Ahh, residents. At any rate, when I saw him start to come into the exam room, I jokingly said he wasn't allowed in--and thus set the stage for one of the funniest doc appts I have ever had.

They asked me how I was feeling. I looked at Susan and Dr. S (who is a female) and replied, "You two will understand this...I feel like I'm constantly wearing an underwire bra and it's the end of the day and you just want that sucker off!" Completely deadpan, Dr. Tuttle replies, "oh god, I hate that feeling!" I softly patted his hand and said, "I shouldn't have assumed...I'm sorry."

During the exam, they were looking at my blisters and remain completely stumped as to why I developed them. I replied that it's not really very comforting to hear so many "I don't know's" and "I've never seen this before's". It's not comforting when google doesn't even know the answer, btw. During this process, Dr. Elliot and I were carrying on a side convo about something when he dropped some huge medical term. "Whoa...that's not even a $5 word!", I exclaimed. "That's more like a "$10 one!" "I know," he replied, "but I feel like I need to show you I know something about medicine!" He said he wanted to put my comments as his fb status but was concerned about HIPPA...thus began my educating my doc on how HIPPA works...very odd but amusing. Dr. Tuttle, Susan and Dr. S just stood by, bemused by the whole interaction.

There was also a conversation about the difficulties of suddenly losing your ability to utilize your dominate hand for specific things, but Neil says I'm not allowed to post that conversation on the internet. Ask me about it in person though--Dr. Tuttle was so amused, he repeated it to others on my care team after our consult. I may have missed my calling as a comedian.

We finally got to the pathology report. The bad news is that the tumor was not 2x3cm (roughly 1x1 inches). In fact the MRIs were completely wrong. My tumor was much larger and closer to 3x1inches (7.7x2.6cm to be exact). That means that we absolutely made the right choice for a mastectomy as that is rather large, even after chemo. I also had a lymph node that was positive for cancer (this is actually not the surprise they expected it to be as we have been aware of this possibility since before teh definitive diagnosis in September).

The good news? There's so much! Dr. Tuttle got "wide margins" of 18mm--this means that there was quite a large amount of space between the healthy, non-cancerous tissue and the tumor. This reduces the chance that I may have to have radiation (still need to do that consult). Also, even though I had lymph node involvement, it was only in 1 of all the lymph nodes they removed (which was 9--a remarkably small number to have on one side of your body--typically, ppl have upwards of 20. Medical oddity once again).

The other piece is we received my Nottingham score. This requires a bit of explaining. The Nottingham (or Bloom-Richardson) score comes with the path report and looks at how the cells of the tumor are under a microscope. IT IS DIFFERENT FROM THE STAGING SCORE!

From here:

..."The Bloom-Richardson system is used for grading breast cancer, and has a scale of 1 - 3. A pathologist will take a sample of tissue from your tumor, and examine it under a microscope. Tumor cells that look most like normal cells are given a low grade, while those that look the most abnormal are given a high grade. High-grade tumors are fast-growing, spreading (metastatic), and aggressive. Knowing your tumor grade helps your doctor decide which treatments may be best for you.

The Tumor Grading Process

A pathologist looks at the tumor cells and checks for three microscopic features:

• degree of tumor tubule formation (percentage of cancer composed of tubular structures)
• tumor mitotic activity (rate of cell division)
• nuclear grade (cell size and uniformity)

Each feature is scored on a scale of 1 - 3.

Cell Feature Scoring

The pathologist will assign a value to each feature of the cells, based on its activity. This is how the scores may be understood:

Feature Score 1: Slow cell growth rate
Feature Score 2: Intermediate cell growth rate
Feature Score 3: Fast cell growth rate

Feature Scores Add Up to Three Grades

The score of all three features are added together for a total between 3 and 9.

Grade 1 is the least aggressive, while Grade 3 is the most aggressive type of tumor.

Tumors that are given a high grade and that contain dead cells (necrosis) are more likely to recur after treatment. High grade tumors will be treated more aggressively than low grade tumors."

Whew...sorry for the impromptu bio lesson, but I feel like it's important. Given all the info we had prior to surgery and treatment, I honestly assumed the worst. I knew my tumor was large and had progressed. We assumed it had grown quickly. I was honestly expecting the worst when it came to my Nottingham Score. Imagine my surprise when I saw the path report--I scored a 3! I feel as though I have won the lottery! This is the best possible score I could have received. I had a slow-growing, well-differentiated and NOT AGGRESSIVE type of cancer. This puts my prognosis at very, very high (there are other variables to consider, but still--this is excellent news)!

This score, combined with the wide-margins means...for all intents and purposes, I am currently cancer-free! And you are all stuck with me for a very, very long time. 

I still have some treatment to go. I will receive a dose of Herceptin every 3 weeks via infusion (minimal side effects) and will probably be adding in Perjeta due to the positive lymph node (the side effects listed are wrong--there are also minimal side effects for this drug). This will be an hour infusion every 3 weeks--a significant decrease from the 4-6 hours every week I would spend on the unit! 

I'm starting to grow my hair back as well! I wouldn't say I'm shaggy by any means, but there's some definite upward movement going on up there. I managed to retain my eyebrows and most of my eye lashes throughout both sets of treatments, but was bummed to see them drop out over the last few weeks. It turns out they were dropping out to accommodate new growth! So, I've got little, tiny eye lashes and eyebrows growing in. Not gonna lie, it looks a little goofy, but I'm glad they're coming back.

Thanks guys. I know I always end this thanking you all. But honestly! The support we have received is just so amazing. Every day at work I see how trauma can be exacerbated by stress. Neil and I are a great team already, but adversity has a way of wearing people down. We have been surrounded by wonderful friends and family who have been there with us, through all of this--we've never felt alone! Your support has made it possible for all of us (me, Neil and the boys) to weather this horrible storm. And honestly--I feel like we're going to be okay because of all of that support. So, thank you. 

Post-op

Well, it's a week and a half and I'm finally starting to feel a little more normal.

THANK YOU to all our friends and family who have called, texted, stopped by and sent food/flowers and love. It's really made the last week and a half so much more manageable.

I'm told the surgery went well. There were no complications with the surgery itself and both the surgical oncologist (Dr. Tuttle) and the plastic surgeon (Dr. Cunningham) we're pleased with how everything went. The day after the surgery, I noticed a sharp pain on my right side (surgical side), but thought nothing of it. Later, I thought I could feel some wetness on that side, but once again, because I was completely numb on the right side of my torso I assumed it was nothing. At midnight, my nurse was examining my surgical site and found a very large blister that had burst on my right torso (about where my elbow would hit). She dressed it and by 6am I had developed another 4 blisters all up my side--about 6 inches worth. The docs were baffled (because once again, I'm a medical oddity). The pain was immense and I was unable to move my arm at all without pulling either a blister or wounded skin--and insult to injury, I'm a righty! But, we saw a wound care specialist(!) and we're still allowed to go home.

While I was hospitalized, J came down with the flu. I was hopeful that I would miss it having spent 3 days in the hospital and Neil sanitizing all the things before my discharge (those of you familiar with Neil's cleaning know how thorough he can be!!). Alas, when it rains it pours...instead of spending the last 10 days only recovering from a mastectomy, I've also been recovering from the flu and the above noted blisters. The flu and blisters have actually been more difficult than the surgery itself in terms of pain and discomfort.

I'm finally starting to feel a little better today. Neil says that my blisters are starting to heal. I can't see them as I'm not allowed to lift. My right arm due to surgery AND because lifting that arm has meant it pulled on the sensitive skin where the blisters have been healing. Because of the pain, it's been incredibly hard for me to text or to talk on the phone. I hope to be able to catch up with you all over the next week as the pain goes down and the healing continues.

Thank you again for all you kindness and care during this time!

Night before

It's the night before I head into surgery. It's surreal to sit here, just a few hours away. I'm both ready and not ready for this.

I'm ready to be rid of cancer. I'm ready to get it out and truly begin healing. I'm ready to be on to the next step in the recovery process.

I'm not ready to say goodbye to my treacherous breast. Despite the fact that it tried to kill me, I'm sad to say goodbye. I am sad about saying goodbye to the future things as well--most likely done with having and nursing children. I'm sad about how my body will look. Despite having one of the best reconstructive surgeons in the nation, it will never be the same. I'm sad at not being able to lift and hug my family for the next month. I'm not ready for the huge surgery and the pain that's coming.

Through all of this, Neil and I continue to be overwhelmed by the generosity and care of others. We are humbled. Another big thank you to all of you for your continued love and care.