June 20th.

The big day came which included two appointments. First, a follow-up with my surgeon, second, with my Medical Oncologist (MO). I was anxious for both of them, because I was feeling so much better, getting some range of motion back, and I knew that the Oncotype Score would determine my treatment path.

So, to quickly let you know about Oncotype scoring... this is a genome test that goes across 21 genes in the tumor itself. It predicts the chance of recurrence. I qualified for the test because I was ER+, Node Negative and Her2-. They are working to expand this test to other types of situations (for instance, if 1-2 nodes are positive).

Anyway, the scoring is on a 100 point scale, and looks like this:

<18: Low risk of recurrence (probably don’t need chemo, risks of chemo outweigh benefits)

18-30: Medium risk of recurrence (might do chemo)

>30: High risk of recurrence (will most likely do chemo)

This scoring also takes into consideration that the patient will be on Tamoxifen, or some other form of hormonal therapy after active treatment.  

Okay, so now you have all of the info I had going into these appointments. I head into my surgeon's office and she decides I don't need the steristrips anymore. The scars are healing nicely and she tells me that I can wear the compression band less frequently until I no longer need it. Awesome!

Then she tells me that she has my Oncotype Score. She is excited to tell me, and so I know it must be good news. Good news, it is. The score is 16! Sweet 16! I've never been so happy to get such a low number on a test. Now, she tells me that I still need to prepare for chemo. As I said in the last post, I already knew this, but now it was becoming more real. She said the MO will most likely want it on the treatment plan because of my age and tumor size. I had already decided I'd do it if it were even an option, but now, faced with it, I wonder. Do I, don't I? 

I leave her office happy with the information she's shared. It is such good news. 

Then a couple hours later, I am in my MO's office. I tell her I know the score. Awwww, she is happy I know, but was also excited to tell me. But, we still do the happy dance together, because I'm still happy about it. Then we talk treatment. The recommendation is four rounds of what is called TC. Stands for Taxotere and Cyclophosphamide. It is given on a three week schedule, so infusion is day one, then the next infusion is on day 21, for four infusions. I admit, I hmmm'd and hawww'd for a hot minute. Then practically smacked myself back to reality. I had already made the decision. If it is a maybe, it's a yes. 

Look at all that hair in the wind!!

Look at all that hair in the wind!!

So, yes to chemo! 

Now, Of course, I asked the surgeon and my MO about my hair. The surgeon and I had a good laugh over the fact that I was totally fine with no reconstruction, but my hair... now that I really cared about saving. Turns out there is a way to try and save it. It is called cold capping, and I will go into more detail in another post. Basically... it's a very cold cap (-28 Celsius) that you wear while getting chemo.

Yes, I'm interested. 

So it begins. I get the cold caps set-up, first chemo is set for June 30th and now I go to the pharmacy to load up on the pre-meds I need. I also scour resources to make sure I have everything I need to be prepared for chemo (hahahaha.... and chemo says to that... 'well bless your heart, isn't that sweet.'). 

But, today, I get to be happy. Happy for a low score. Happy that chemo is an insurance policy. Happy that I get to have another Philz before heading back to SLO! :-) 

June 30th is right around the corner.

Another good appointment... another Philz in my hand!&nbsp;

Another good appointment... another Philz in my hand! 

Walking & Pathology & Choices.

First walk and the Jacaranda trees in bloom!

First walk and the Jacaranda trees in bloom!

The first walk outside after surgery was hard and wonderful all at the same time. Only four days after surgery, I found myself on the streets of Brentwood, aiming to make it to the corner of the block. I made it with slow, focused and small steps, but I made it. It was hard to believe that just one week before I had been hiking to the top of one of our local peaks! 

The great thing about the timing is that it coincided with the blooming of Jacarandas trees, my favorite! My walks were full of purple blooms, and they were lovely. Every day I would go for a walk, and try and go a little longer each time. 

One thing about a mastectomy is that you get these things called, drains, and they are exactly what you think they are. They help the surgical area drain and they are not painful, but very uncomfortable. Especially when you move. They also stick out, so make it hard to wear anything but very baggy clothing. Luckily I found cami's that are made for this... they have pockets inside to hold the drains and they were a godsend. 

Eight days after surgery I had my follow-up appointment. Thankfully my drains were producing low levels of fluid so the drains came out! They just snip the stitch and take them out right in the office. Turns out there are very long, skinny sponges on the end of the tubes. Now I understand why they are so uncomfortable! It felt so great to get them out, like a new freedom! 

After the drains came out, we went through the pathology report. Here is where you learn that the MRI is not always correct in its sizing, in either direction. It had said one lymph node was over cm (which can mean cancer is present) and it also said my tumor was 4cm. Well, here is what was found to be true - Main tumor: 6cm (!!), lymph nodes were all normal size, and NO CANCER cells present in any lymph nodes that were taken out (four on the tumor side). As soon as she said that the lymph nodes were clear I got so happy I started to cry and I did my best to hear what she said after this (this is why they tell you to bring another person with you!). 

She continued on: The tumor is Estrogen Positive (ER+), Progesterone Positive (PR+), HER2 Negative (HER2-)... 6cm... no lymph node involvement... no other lesions found in the breast with the tumor (right side) and no lesions of any kind in the left breast. The tumor was on the larger side, grade 2 (on a scale of 3) and they got clean margins... 10mm (1cm), which is amazing. Clean margins are 1mm or so, there is some debate, but my margins were huge! 

She told me to be ready to talk about chemo. Originally it was thought that I may go straight to radiation. But, because of the tumor's size, and my younger age (42), I was being told that chemo would be on the table. It might be a choice, depending on my Oncotype score (my what!?). This is a score that predicts recurrence risk in women with tumors that are ER+, and who have no lymph node involvement (this is starting to change, as well, as they do more studies on women with some lymph node involvement). 

Philz after meeting with surgeon &amp; a great pathology report!

Philz after meeting with surgeon & a great pathology report!

We head straight to Philz to celebrate because the overall news is so good! Large tumor that hadn't really done anything! I could finally go in public with no drains hanging everywhere, and a good cup of coffee sounded wonderful. Walking down the street to Philz felt so amazing, even though I was slower and not very mobile with my arms or chest area, I felt so free! 

A few days after this appointment we met with the Medical Oncologist (MO) to go through the options. It was June 5th. When I see her, she confirms that we should get the Oncotype Score ordered, see what the result is (about a two week wait time) and then make the final call. She does tell me to prepare myself for chemo. Even with a low score the recommendation may be a 'light' round of chemo given the tumor size and my age.

I had an Oncotype score on order, and if chemo was recommended, I was all-in. Chemo isn't something you can choose to do later, you must do it within a certain time frame after surgery, so mentally, I was gearing up to say, "yes," to chemo. It felt like the odds of chemo not happening were going to be very low. 

Now to wait for a the score... June 20th was the next appointment, and that would be the day that decisions would be made. Until then, I'll drink some Philz, head back to the Central Coast and head back to work.

Philz after the meeting with the MO.

Philz after the meeting with the MO.

Surgery.

The morning of the surgery has arrived, and after checking in downstairs, my husband and I are ushered upstairs to wait some more. I've got my armband on, and the pictures of Big Sur are helping my nerves. I'd never had surgery before, so I had no idea what to expect. The most nerve racking part to me was the idea of being put under. 

After sitting in the waiting room for about ten minutes, I get called back for prep, wipe myself down with the cleaning pads (which they've warmed up to make it more comfortable) and get into the gown, socks and shower cap. It's a good look, for sure! 

Once I'm ready and in bed, they bring my husband back, and I can feel my nerves calming down a lot. I'm ready to get this thing (tumor) out of me, so we can get on with it. The anesthesiologist comes in and she goes through all the steps she will take to make sure I'm comfortable. Some nurses and residents come by and then my surgeon comes in and I'm instantly calm and ready. She has such a great energy that puts me at ease, instantly.

The anesthesiologist returns and gives me my "margarita" (her words) and then we start rolling down the hallway. My husband kisses me, we say, "I love you," to each other and then off I go. I remember being rolled into the OR, I remember everyone moving around like a well choreographed machine, then a mask over my face and... off I go... 

I wake up and there is a nurse right at the end of my bed who says, "Hello Lori!" 

"How are you feeling Lori!?"

I look down and see a wrap around my chest that is like a very big, and tight, Ace Bandage. Then I look up at her and say, "I'm so happy!"

I think I shocked her a bit. There's a pause. Then she says, "Oh, good! Do you need anything?"

I let her know I need some water. She brings a cup of ice chips, and it feels like this is the best meal I've ever had. I get very excited about the ice chips, and the next thing I know, my husband is there and starts helping me with the ice chips. We are all laughing. 

Then, I feel very nauseous, and the nurse puts something into my IV which makes everything better, instantly. She takes away the ice chips and tells me I've over indulged. No more ice chips for me.

The nurse then lets me know that she got me a single room, and that I will be taken to it shortly. Getting my own room is like getting the best Christmas gift ever! 

A couple nurses roll my bed up to the room, ask if I think I can transfer myself and in one attempt to move my core, it's a NO. GO. They move me over and I get comfortable and realize my range of motion is very limited, and I'm not able to put any pressure on my arms at all. I need to get used to not lifting anything over a pound and not using my arms to help me move around. Definitely no reaching for things!

Watching HGTV and ordering some food!

Watching HGTV and ordering some food!

All of the nurses are so amazing and nice and make me feel like this is going to be okay. They help me get up out of bed and I realize I can do it and walk to the bathroom and back to the bed on my own. This is a huge deal only a few hours out of surgery! By that night, I'm on pain meds, and am already feeling better. I watch A LOT of HGTV. Best tip from a friend who had been through surgery a few months before me... HGTV is easy to watch while coming off anesthesia and taking pain meds. 

The next morning, the residents come by to check on me and look at the scars and say that everything is healing nicely. They announce that they are releasing me! I take my first real walk with my husband (who spent the night on a nice bed they provided for him) around the floor I'm on, and it feels okay. I sit in a real chair for the remainder of the day as I wait for the discharge papers.

My surgeon visits around mid-day, checks everything out and is pleased. I tell her how thankful I am, and I cry, and tell her how awesome she is. She looks at the scar one more time and tells me that this scar is going to look amazing with the tattoo I plan to get. She remembered that I had told her I was seriously considering a cool tattoo across my chest since I was going with no reconstruction. This made me so happy!

I change into the comfy clothes I brought for post surgery (i.e. I am able to put them on with my limited range of motion), get discharged, and then we drive to our AirBnB in Brentwood where we will stay for the next two weeks as I recover and go to follow-up appointments. The ride home is only a couple miles, but every bump, and stop, and go... feels like torture. I have drains that are stitched into the surgical area, and they pull every time the car, well, moves. I am praising our smart decision to stay in LA after the surgery. A drive back to SLO at this moment would have been the worst idea ever. 

We park, I walk up some stairs and then plant myself on the couch, where I will be for awhile. Thank god for Netflix!

 

Memory Foam Wedge and lots of pillows were my jam!

Memory Foam Wedge and lots of pillows were my jam!

First Vacation... Then Surgery.

It turns out, when a person is diagnosed with cancer, if it is not aggressive, there is a lot of waiting. Hurry up and wait, actually. Such was the case for me. Lots of appointments, tests and meetings. Then, wait. We had a vacation on the books that had been planned for over a year. Somehow, this trip fell right between my last appointment and my surgery (about a two and a half week span). 

I told my doctors I had this trip, and they said, "go!" So, go we did! 

We were headed to Campbell River on Vancouver Island, via Seattle. When we landed in Seattle it almost felt like I'd left the cancer behind in California. It was a great feeling. I had booked us a houseboat on East Lake Union, and it was everything I hoped it would be. Peaceful, beautiful and unique! 

Our view from the houseboat.

Our view from the houseboat.

From there we headed to Campbell River where we spent five amazing days with family in beautiful cabins right on the river! While in Campbell River I got the finalized surgery information and was told surgery would be on May 25th. Having the date solidified was a relief and made the vacation that much more enjoyable. 

On the way back to Seattle we got to see friends who now live in Vancouver, which was a treat! Then back to Seattle and home. 

Upon landing, I headed straight to work because we had a big event that night that I was MC'ing. It was a hard landing after ten days of bliss, away from the realities of life. I did what needed doing, and it was exhausting. 

Eight days later my husband and I were moving to Los Angeles for my surgery, and the two weeks after, so I could go to my follow-up appointments easily. We packed up the car, dog and all, and made our way back to a town we knew so well, but would not see much of on this trip (unless you count an OR, hospital room and the inside of an AirBnB apartment seeing LA!). 

Seattle was now a distant memory. Treatment was officially in high gear!

May 25th, 5:30AM we stepped into the hospital to check-in for my double mastectomy with no reconstruction and it was reassuring that the waiting room had a large print of one of my favorite places on the planet... Big Sur. I took it as a good sign! 

 

 

One of my pictures of Big Sur.

One of my pictures of Big Sur.