Chemo... The Final Chapter.

Here's the thing about Chemo. It doesn't give a fuck about your plans, your timeline or what you think it should be like. Chemo will do whatever the fuck it wants, when it wants, how it wants. So, when I was back on track... Port, check. New drugs, check. No more allergic reactions, check... I was counting down the days to the final chemo, thinking there would be no more curve balls. 

My spot before every post-infusion appointment!

My spot before every post-infusion appointment!

Hahahahahahahahahaha. That is so hilarious. 

Turns out the Carboplatin, as it is known to do, caused my white blood cell count to go down. A LOT. Like... "You are now neturopenic," a lot. Like... "You are not getting chemo this week, you are now going to learn how to give yourself shots to help bring your white blood cell count up, and you are not leaving the house for the next three days," a lot. 

Yep, that's right, neutropenic AND... bonus... I got to learn how to give myself shots. One shot a day for four days after every chemo infusion until the last one. Turns out, it really wasn't too hard once I got used to it. 

Luckily, these shots worked and I didn't miss another chemo. It also turns out that I didn't need to make up the missed week of chemo, thankfully. My White Blood Cells behaved enough to make chemo possible up to the last infusion, but we had to take serious precautions around the house, and I was not allowed to be around big crowds. 

Trimmed wig... ready for the big night!

Trimmed wig... ready for the big night!

Guess what I do at the end of each summer for the program I run? I MC an event in front of 500+ people, then participate in a dinner with 100 people afterwards. Well, this year, I stayed backstage until go-time, no mingling with people for me, then left right afterwards with no dinner for me. But, I was happy to be there at all. It was the one night I wore my wig and it was the day after my last big infusion, so I had to power through, but it was totally worth it! 

After the big night, I crashed, and crashed hard. The largest crash of the summer. I didn't leave the couch except to pee and to take a very short walk halfway down the block. Other than that, I was on the couch sleeping and binge watching Netflix. 

Celebrating the last post infusion appointment with the oncologist with a break in Palisades Park!

Celebrating the last post infusion appointment with the oncologist with a break in Palisades Park!

Then, I had two more weekly infusions. Then... I was done. FINAL CHEMO! I had dreamed about this day. I had a big marker for this day because I had bought tickets to the Tom Petty concert at the Hollywood Bowl for September 22nd (bought them before my diagnosis!). Last chemo was September 21st. Radiation mapping was the morning of September 22nd. Power nap in the afternoon at the hotel. Then... Tom Petty. Second to last concert of his tour, and as we all know now, second to last concert ever. I'm so grateful to have seen him, and it was an amazing night. I made it to 11PM, then I had to call it quits. Didn't stay for the encore, but I was so happy to make it that late into the night (even though I sat for most of the concert!).

The next day, I did pay for it.. but I just slept in the car the entire drive home and was so happy to know that this phase, this crazy chemo phase, was over. Now a ten day break... and on to radiation!

Tom Petty!

Tom Petty!

Chemo... Part II.

Prepping Cold Caps.

Prepping Cold Caps.

Round two was much like round one, but with a little less chaos. This time it was just myself and my husband, and he was doing the cold cap work. So, we still had some chaos, but with just the two of us, it was a little more peaceful. I felt for him, needing to check temperatures, rotate caps, make sure they were cold but not too cold... sitting on dry ice, but with protection, etc. 

We drove down in the morning with back windows down and a cooler full of dry ice and cold caps. Took a walk in the parking lot before heading upstairs. Once upstairs, we got settled, the nurse took my weight then started the IV. Turns out I don't have great veins for an IV when it is an IV for chemo. This was the first day my nurse and I discussed a port... but with only two more rounds left it seemed kind of silly to get a port placed. So, we decided to power on for the last two. 

At the end of the infusion I still had four hours of cold capping. They were nice enough to give us an exam room to hang out in for the four hours, but it was not comfy or relaxing, at all. I was definitely questioning my attempt to save my hair. I wasn't sure it was worth it, that is for sure. 

Scarf time.

Scarf time.

The next few days went pretty much like the first round. My breathing was a little bit tighter this time, and the fatigue was definitely stronger. My hair was also shedding, a LOT. I started to have some pretty serious balding spots. By day 6 after the second infusion I had decided to wear a scarf like a headband to cover the bald spots on top. 

Then, on day 10 post second infusion, I had a great day at work after a big set of presentations. I came home and got changed for the afternoon and evening. Took a nap, had a snack and was enjoying a nice dinner with my husband. Then... bam... hives. On my head, my face, my neck and shoulders. They were enormous hives... like I've never seen. 

Benadryl was to the rescue and I went straight to bed. Well, I woke up in the morning with hives from head to toe, with a lot of swelling. Breathing was a little tight, but mostly I was one big hive that itched something fierce. I took more Benadryl and e-mailed my doctor. It was a Saturday. She e-mailed me back right away and moved me to prednisone given that Benadryl was doing nothing for me. 

Prednisone. I took this as a kid for my asthma and I didn't love it. I was not happy I had to take it, but was happy that it would help the hives. This whole thing meant the next chemo was on pause until we knew the hives were gone, or at least much less severe and managed well. After a couple days, things were much better. Then, I saw my doctor a few days later and things were looking very good. We were going to change my regimen, for sure, as she and the entire pharmaceutical team agreed that the chance of severe allergic reaction was likely (anaphylactic shock was all I needed to hear to be convinced we had to move to something new).

Hives... hives, everywhere.

Hives... hives, everywhere.

Things were looking good. Then we drove home and by the next morning I was in full hive mode again and my entire right arm was swollen up to the armpit, the left was swollen to the upper arm. I was worried I'd now triggered lymphedema, and the itching was unbearable. I e-mailed my doctor, with pictures, and she immediately prescribed a second round of prednisone and cancelled the next chemo round, which put me a week behind schedule, in the best case.

It was in this moment that I... Lost. My. Shit. I was uncomfortable, unable to do any activities because it made the hives worse, and it was a hot summer, which didn't help. I felt trapped and my hair was falling out in big clumps. I told my husband we were done with the cold caps and asked him to get them ready to ship back. I then got pissed off at my hives and just had a pissed off day. I took the first pill in the new round of prednisone, then called my friend and asked her to come over and shave my head. I poured her a glass of wine, me a glass of sparkling water and the prednisone kicked in and with every lock of hair that fell I felt a huge weight lift from my shoulders. It went from being the worst day to the best day! 

Those cold caps... they were NOT for me. They made me feel less in control, not more, and they limited my activities and stressed me out on infusion day. I am so glad I gave them up (but also glad I tried)! 

Because I was allergic to the Taxotere drug, I was moved to a new cocktail of Abraxane and Carboplatin. Abraxane was to be administered weekly for six weeks and Carboplatin would be every three weeks. Turns out Abraxane is pretty much the same drug as Taxotere, but the delivery chemical is very different. For Taxotere it is a synthetic material and with Abraxane, it is an animal fat. 

Now, as you can see, I'm would now have six infusions, instead of two, so it was clear that I'd need a port. So, as soon as the hives got managed (thankfully, it was only a week delay), I did have my first new drug cocktail, via IV and then got a port a couple days after that. My nurse helped me see the beauty of the port (and my arm with blown veins also made it clear). She took me through the entire procedure of getting a port, and told me all the things that would be easier if I had one. I was sold! 

First chemo post cold caps.

First chemo post cold caps.

Also, I should note, this was the first infusion with no cold caps and it was glorious. I got to relax, get to know the nurses, spend a nice couple hours with my husband and just... be. The nurses both said they felt like they saw the real me that day, and they were right! 

With the new cocktail, I had similar symptoms for the few days after the infusion, but the Carboplatin increased my nausea quite a bit. But, no additional itching or swelling. The hives were still around (and according to my oncologist, might take months to really go away) but the prednisone did its job and my daily Zyrtec did keep them at bay. I was so thankful to have just a few patches at any given time.

So... I was well on my way to completing chemo. Still had 50% left to get through, but the new plan felt good. I was on the upswing, and ready to get my port in for the rest of the infusions! 

I never thought I'd be so happy to be able to get chemo again!

 

Chemo... Part I.

June 22, 2017. I confirm with the cold cap company that a woman will meet my husband and I at the infusion center to train him on the cold caps. My appointment is at 9AM, so we will meet there at 8AM so I can start the first cap by 30 minutes before infusion.

June 28, 2017. I am at the drugstore picking up prescriptions to take during chemo. One of the pill bottles actually says, "Take 1 day before and 1 day after CHEMOTHERAPY." This, somehow, makes it real. I am really going to get chemo. 

June 30, 2017. We are out the door by 5:30AM. I've got my large water bottle, snacks and a cup of decaf coffee for the road. We live about 2 hours from the infusion center, so it's a bit of a trek. The drive is easy, and we get there a little early, so we take a walk around the parking lot. Then we head upstairs. 

The cold cap woman met us in the waiting room. She had a cooler full of dry ice and cold caps. An electric blanket (for me to wear, because I will get very cold!) and heavy duty gloves to handle the caps. I officially felt like we were a circus that had come into this quiet environment and I wondered if it would really be worth it. But, we charge on. It would be a long day, not only did I need to wear the cap for 30 minutes before the infusion, I had to wear it during infusion and for FOUR hours after infusion! The center was not really prepared for the four hours after infusion, but they were very nice and let me stay in my chair for the four hours. 

As they brought us into the room, I seriously felt more like I was headed into a spa than a chemo room! The chairs were really nice and there were big windows, and, it was actually quite peaceful. There were only a couple of us at that hour, but soon, others arrived for their infusion. 

First, they weighed me so they could put together the right amount of meds. Then they got the IV in, which we found out, is not so easy on me for chemo. I have great veins in my elbow area, but they do not administer chemo in that location (or near joints) if they can help it, so they look for a vein in my lower arm. This proves to be difficult, and is a foreshadow to what will become an ongoing issue that requires attention.

In my Cold Cap get-up!

In my Cold Cap get-up!

Once they get the IV placed, they drew blood and ran a couple tests, mostly to make sure I'm okay to receive chemo. On the first day, it all came back looking good, and so we began. 

Now, by this time I was fully in cold cap mode (they switch the cap to a cap that has been on ice every 30 minutes), so to be honest, it was kind of a blur. 

The chemo I received that day was referred to a TC. It stands for Taxotere and Cytoxan. These are two drugs that, together, made up my chemo treatment. I was scheduled to receive four rounds in total. One every three weeks.

To start, they gave me a bag of Benadryl (this is to stop allergic reaction to the Taxotere delivery agent). They also administered a steroid and an anti-nausea drug that works for up to five days. The Benadryl made me very sleepy, so I went in and out of sleep for the first half of the infusion.

As she started the first bag of chemo (Taxotere) I tasted it immediately. Metallic is the best way to describe it. I also felt a stomach flip, so I ate a couple crackers, drank some tea and then fell asleep until the next cold cap had to be put on. 

Once the Taxotere was done, they came over and took that bag down. Then they put up the Cytoxan. As soon as this one started, I taste it again, but I also had a wave of nausea. I ate some more snacks, and that worked. It turns out, eating snacks during chemo can help a bunch. Also, while going through chemo, in general, the rule is to never let your stomach get empty. This really helps with nausea. 

Chemo is done, IV is pulled, and we do the caps for four more hours, then leave the center at 4PM. The drive home was uneventful. 

I need to take steroids the day before, the day of (they administer these via IV) and the day after. So, as much as I was tired from a long day, I was actually on a decent steroid high, which made it hard to sleep. The Benadryl sleepiness only lasted a couple hours. I took Ativan that night to help me sleep and to help keep nausea and bay (Ativan is a miracle drug... it does it all!). 

The day after I was tired, but still have steroids to take, so have the steroid high hanging on. This lasted for another full day. 

My chemo was administered on a Friday, and I thought I'd see friends on Sunday afternoon because on Saturday, and even Sunday morning I was still feeling pretty good. Then, Sunday around 2PM it hit. The steroid high was gone and I was hit with a wave of fatigue like I hadn't felt since having mono when I was 26. I couldn't keep my eyes open, much less, see a friend. So, I slept all afternoon, ate in between naps, and then slept all night. The next morning I awoke and could barely make myself move enough to go to the bathroom. I was definitely not going to work. 

I texted work to say I wouldn't be in. The next thing I knew it was 1:30PM. I hadn't slept in that late since college, and even in college sleeping this late was rare! I got up, ate some avocado toast and an apple, and then laid (slept) on the couch for change of scenery. I didn't have bad nausea, thankfully, but the fatigue was strong. 

Then, the next day, I woke up and had a lot more energy. So, I went into work and it was good to be somewhere that made things feel normal. From that day on, I progressively felt better, but also, progressively lost my taste. I could smell everything, but couldn't taste anything! So frustrating. 

Cosmo... and I still have hair!

Cosmo... and I still have hair!

The weekend before the next infusion, my husband and I had a mini local vacation because I had won a hotel room at a place on the ocean. So, we stayed there that Saturday and walked to dinner at a nice restaurant right on the cliffs. I had one drink (my oncologist approved it) and realized that my taste was coming back a bit. When I got my dinner, I could taste for the first time in two weeks and it was fabulous!

The five or so days before the next infusion were my best. In fact, by that time, I was seven weeks post surgery and getting much of my range of motion back. I felt so good that a friend and I went on a hike up one of the local peaks. It was amazing!

First Hike - Seven Weeks Post Surgery, 2.5 Weeks Post First Chemo.

First Hike - Seven Weeks Post Surgery, 2.5 Weeks Post First Chemo.

I couldn't believe I was hiking while doing chemo (and, really, so soon after a double mastectomy!). The hardest part was dealing with my hair because when cold capping you're not supposed to wear a hat or get your head too hot. But, during chemo, you're very sensitive to sun, so a hat is a must. Well, I slathered on the sunscreen, went without a hat, and pulled the hair into a very loose ponytail. I did my best! There was no way my hair was going to keep me from the trail. 

Irish Hills Hike The Night Before Round Two!

Irish Hills Hike The Night Before Round Two!

Then, a couple days later, we did one more hike. Then, the next day, I was headed back for round two. Knowing I was about to go through the whole process again, and chemo is cumulative, so I knew the side effect could be a little more severe. I was not looking forward to the cold caps... but I only had three more rounds, so I would just suck it up in hopes of saving the hair. 

But the evening before the next infusion, I enjoyed the views from the top of the hill that extended all the way to the ocean. 

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.

The Dream Team - Part 2.

The first meeting is with the surgeon and she sets a perfect tone. She sits down and looks at me and my husband. She says, "we all know why we're here... and we'll get to that, but first, how are you doing?"

She looks me in the eye and gives a light touch to my arm. I instantly know I've made the right decision with this team. I tell her I'm doing well and that the shock is wearing off. I tell her I'm ready to get this thing out of me and get started with treatment, whatever that will be. 

As we go through my case, she lets me know that all of the doctors in the room were shocked at how cystic my breasts were. Not only did I have a good number of them, they were all on the larger side. Right after she said this I stopped her and said, "I will only consider a full double mastectomy, I'm not interested in any other option." 

She closed her binder, looked at me, then at my husband and said to him, "I like her!" 

Then she looks at me and says that the team thought it would be a longer conversation about "the double" and that she is happy to hear I'm also wanting this course of action. With my dense, cystic breasts, a double is the most logical surgery, and I am so glad we're all on the same page right away. She then checks my breast and lymph nodes. Definite tumor in the breast, lymph nodes feel fine, but MRI had shown some activity, so we won't know for sure until after surgery, but she is feeling good about it all given the relatively clean MRI. 

As she prepares to leave, I quickly let her know that we have a trip on the books to go up to Seattle and Vancouver Island to celebrate my Aunt and Uncle's 50th wedding anniversary. I'm scheduled to leave in the next few days and will be gone for eight days. She instantly tells me to keep the trip on the books. Nothing will change, and they won't even get me on the surgical calendar for two weeks. I'm so happy I can still take the trip. I think it will be a great way to spend the time between diagnosis and surgery! 

Next up is the Medical Oncologist. She also sits, looks at us and asks how I am doing. She says, depending on what is found during surgery and in the pathology report, chemo may or may not be on the treatment plan. It's an unknown for now, but she and I will know each other for a long time, as I will definitely end up on some sort of hormone therapy, which she will manage.

After her, I meet the Radiology Oncologist. Radiation will definitely happen. She asks how I'm doing and how my husband is doing. By now, I'm feeling very good and so happy that I've found my team. I tell her how happy I am to have a plan forming with such a great team. 

After the main three, I see the plastic surgeon who goes through every option I have in regards to reconstruction, which includes, no reconstruction. He is so informative and spends about an hour with us. He shows me before and after photos of all reconstruction types, and goes through the pros and cons of each. 

Ultimately, I know I will go with no reconstruction, but am glad to have all of the information before making the final decision. Which is, no reconstruction. 

The great thing about this team is that they made me part of the decision team and there was no judgement. I've heard stories around reconstruction decisions and how many women felt more pressure to get reconstruction. I never had that, and in fact, I felt so informed that when I chose no reconstruction it was from a place of knowledge, not emotion. It was the right decision for me, and the team respected that, which was so reassuring! 

The entire process of meeting the team took almost three hours. In addition to the above, I met my nurse practitioner, surgery scheduler and a woman from the foundation at UCLA that provides many services including, nutrition, counseling, yoga, reiki, and other self care services. It is a morning full of a lot of information. My husband and I take a lot of notes! 

That night I sleep better than I have in a couple weeks. The team is in place, the plan is getting formed and I know that we are moving forward! It feels good and I actually look forward to our vacation. Nothing will change, so I may as well have a fun vacation. I know this will be the last trip we take for awhile, so I'm going to enjoy it. 

We head back home, pack, and board a plane a couple days later. The surgery is still in the process of getting scheduled, and the treatment plan is still getting formed, but it is coming together and I couldn't feel better about all of it!

 

Love when Mt. Rainier is surrounded by clouds while flying above!

Love when Mt. Rainier is surrounded by clouds while flying above!

The Dream Team - Part 1.

Wednesday, May 3, 2017. I walk into UCLA Breast Center Santa Monica and the word Oncology is on the door. Where 'other' people used to go... I now go. They tell me to bring my husband and anyone else who I think will be helpful during this intake meeting. I will meet every person who will be involved in my treatment, and having at least one other person in the room can be helpful to make sure good notes are taken and all questions are asked and answered. 

One thing I learn very quickly, Oncology waiting rooms are actually very nice. They offer water, coffee and tea, and they have peaceful videos playing and the chairs are comfortable. I appreciate it. 

Love this sign!

Love this sign!

A woman shows up to take a group of us upstairs (it's like we're all in a club and getting initiated, but none of want to be members!) and on the way up I see a comforting sign about UCLA. I snap a picture and send it to my Mom to tell her, "I'm in good hands."

My husband is the only person with me. We sit in the room and wait for the first member of my new team to arrive. 

We look around, at each other, and at the binder sitting on the counter. This is all really happening. I'm officially a breast cancer patient, and the plan is about to get put into motion. I'm strangely more excited than nervous in this moment. Mostly because I'm ready to get this show on the road! 

 

 

 

The surgeon walks in and opens with, "Let's get you healthy!"

I'm in!

The magic binder!

The magic binder!

Week 2.

The MRI results come in and I'm alerted on my EPIC App. An app access medical info that I'd never considered downloading, until now. I open up the results, and this will be the first lesson in navigating the early days of diagnosis. Do NOT open a test result unless you know how to read it. I see words like high velocity, Lymph 1cm+, multiple masses, etc. I read it right before I head into a meeting, and I... Should. Not. Have.

I read it as... "Cancer. Cancer, everywhere." 

I get a call from my primary, while I'm in my meeting, and call her back afterwards. She is calling to go through the MRI results and she is pleased. What!? She says it confirms one cancerous mass (the others were actually cysts, but the terms were so technical, I didn't read it like that) and that the lymph nodes basically look good, one is questionable, but MRI's, it turns out, do miscalculate when it gets into sizing. It can see a lot, but depending on the angles, it may get the size wrong (as I will find out after surgery!). 

Relieved, I vow to never open another result unless I know what I'm looking at! 

After the meeting at work, I have set-up time to meet with the team I work with. I have decided to tell them so there are no surprises. I am met with the most amazing support! They immediately spring into action. Over the next week we all work on a plan so that I can work while I go through this, but also have the flexibility I need. What an amazing gift. 

The second week is easier than the first, but I still know almost nothing. I do A LOT of hiking and knitting. I also ask a friend, whose sister just went through this and works in oncology, if he can ask her if it is okay to drink alcohol. I didn't know if I should limit it and what the protocol was in this situation.

He texts back, "She says, 'I drank a fuck ton of booze after I was diagnosed.'"

I immediately open a bottle of wine and enjoy a nice glass (or 2, or 3) that night. I am just days away from meeting my team at UCLA, and then, we will have a plan, and things will move fast. So, I drink my wine, and actually enjoy the remaining days of 'calm' and no appointments.

I know everything is about to change.

 

All. The. Wine.

All. The. Wine.

The First Week.

As soon as I received my diagnosis, I moved into a world of appointments. Appointments for test results, to get more tests, and to set more appointments. Because of where I live, appointments mean a three hour drive to LA. I got really good at scheduling appointments as close together as possible so we'd be able to drive down in the morning and back at night. 

The first 1-2 weeks after diagnosis felt the most chaotic. I knew I had cancer, but I didn't know anything else, which is a hard place to be. My friend was right, these first two weeks were the hardest of all, because the only plan was no plan. Just appointments.

The first big appointment was the MRI. When I arrived I found myself sitting in the same waiting room I was in just days before, when I thought I was coming in for a simple cyst aspiration. I fill out the paperwork, and for the first time, I need to check the box, "Breast Cancer," where it asks for previous diagnosis information. It feels surreal. As I'm sitting there, a woman comes out from the back and says with such glee, "Thanks! See all of you next year!"

My husband is sitting next to me and we see another couple across the way, and you know. You just know. You're all there for a similar reason, and you're in another camp than the others. You're no longer saying things like, "See you next year!"

I head back and they tell me to put on a full pajama type outfit. Take off all jewelry, metal, etc. I'd never had an MRI before, so this was a new experience. When I walked in the room, I saw a big machine that looked much less tight than I'd imagined. It was a newer machine that was a bit more open feeling and had nice ambient lighting. I got on the table and laid face down with an opening for my chest area. They put the IV in for the contrast, and before I could freak out, they rolled me in and said to stay still for the next 27 minutes. 

As it started I just laid there, and eventually the sounds started to feel almost peaceful. They were repetitive, a little reminiscent of electronic music. The time went by faster than expected. Just like that, I'm done with the MRI, and headed out the door...

... and once again. I wait. wait. wait. for the test results. It will be a few days. In the meantime, I meet with my primary care physician and she gives me options for where to get treated within the UCLA system (along with second opinion centers outside of UCLA if I am interested, which I'm not). I choose the UCLA Breast Center, Santa Monica, which I will learn was a very good decision for me. 

So, while I wait for the MRI results, I start to get my treatment team figured out, and make more appointments for the following week.

The wheels are in motion, and yet, I still know almost nothing.

Knitting helps the time go by... kind of.

Knitting helps the time go by... kind of.

April 24, 2017.

Just another Monday. Get up, make coffee, go to work and do everything I can to keep my brain from worrying about the test results. I won't even know anything until Tuesday or Wednesday, so I'll just keep doing what I do, and wait. Turns out the word wait will become a frequent word in my life. Hurry up... and... wait.

My day is done, I'm driving home and then, there it is... my Dr.'s phone number on my phone. Shocked at how fast UCLA had processed my biopsy, I answer. She can hear that I'm driving, so she says she'll call me back in twenty minutes. I know... If it were good news, she would have told me.

I get home and wait. Wait for the phone to ring. Finally, 45 minutes later, it rings. I'm sitting at the dining room table. She starts by asking me not to search Google for any words she is about to use. That it will not be helpful right now. She tells me it is Invasive Ductal Carcinoma. Invasive, what? It's Estrogen positive, unclear on progesterone and she'll know more about HER2 by Wednesday. I have no idea what half of it really means, I only know it adds up to one word... cancer.

She continues... it's the most common type, treatable, caught early... and on she goes. I keep taking notes. If I just keep writing what she is saying, then everything will be okay. We set-up an appointment for Wednesday the 26th so she can go through the rest of the report with me when she gets more information. I'll have an MRI on Thursday and will figure out where I'll get treatment when I see her. 

This is the moment. The switch is officially flipped. I simultaneously freak the fuck out and see my life flash by and realize that I really like my life, and I want more of it. It was an interesting moment, for sure! Then I cry, scream and make myself nauseous. I can't even think about trying to eat dinner. My husband finally gets me to eat half a sandwich. Then I decide to call my friend who went through this twenty years ago and who is pragmatic and all about taking action. 

My friend answers, I'm bawling (I will learn later that she thought I was about to tell her that my husband an I were splitting up. Well, thank goodness that wasn't the topic!). I tell her, and she says, "Okay, now you know, and now you can take care of it." She goes on to say that this moment will be one of the hardest. The next two weeks, when I don't know much but am getting lots of tests, will require patience and waiting and knowing it will get better. 

My friend helped set the tone as I moved forward. I felt so much better knowing I was not alone, that I'd joined a club full of survivors and people who also had to get it done and move forward. 

I hung up the phone and went to bed. I awoke in the morning and for a few minutes I'd forgotten everything. Then it hit me like a ton of bricks and I cried. Then I got dressed, made coffee and on the way into work I called to confirm my MRI appointment. 

Then I walked through the world looking at people while thinking... they have no idea. I have breast cancer and everything seems normal, but it's anything but. 

 

One week before the call, I saw the most amazing flower display at Carrizo Plain National Monument

One week before the call, I saw the most amazing flower display at Carrizo Plain National Monument

The Unknown.

In April of 2010, I found a lump in my right breast. It was large, and near the surface, and had appeared rapidly. Just two weeks before this, I'd had my annual with my OBGYN, and that lump was not there. It was scary, and I had no idea what it was. The next day I was in the Dr.'s office being scheduled for an ultrasound. 

The ultrasound showed a cyst. It was a large cyst, but just a cyst, thankfully. I had it aspirated and then continued on my way. Turns out, my body was just getting started in the cyst department. Since that time, I've had new cysts show up every 4-6 months. I was religious about getting checked, and each time they'd tell me it was a cyst, and I'd get it/them aspirated (it was almost always more than one cyst). They always came in large (the first one I had was 10cm, and subsequent cysts were between 4 and 8cm), and every time it was nerve racking. 

Fast Forward to July 2016. I had another cyst, in my right breast. This time I had a full diagnostic mammogram because I was 41 and my Dr. wanted a baseline. I also had an ultrasound. Both showed it was another cyst. It wasn't as large as the others, and the decision was made to not aspirate. 

Then, in March 2017, a large cyst appeared in my left breast. I went in for the usual screening and aspiration. I asked if we could have the cyst in my right breast aspirated since I would be on the table anyway. So, I was scheduled for an ultrasound and aspiration on both breasts. 

April 21, 2017 I arrived for my appointment. Going in, and I can't explain this, I just knew something was up. That this time wasn't going to be the usual drill. I got onto the table for my ultrasound and the left breast was a cyst, larger, the usual. Then the ultrasound wand was put on my right breast and there it was. Not a cyst. I knew immediately it was not the usual cyst. It showed up kind of gray with some lumps on the bottom side of it, but more defined on the top part. 

Here come lots of questions. How do you feel, is there pain in the area, how long has it been there (um, well, it was a cyst back in July... so, since then?), have you noticed any other changes in your breast? On and on. Then the Dr. appears. Biopsy. 

They prep me for aspiration on the left side, and biopsy on the right side. It happened quickly and the next thing I know they are shooting the biopsy 'gun' so that I know the sound so I will not move when they are doing the actual procedure. Ultrasound on, and OMG, the number of blood vessels in the area... it seemed like a lot. 

They try and comfort me. Most masses are nothing. Blah, blah, blah... but I know. I just know. But, of course, I don't really know. I won't know for sure for another 2-3 business days, and the biopsy was on a Friday. 

So... I wait. Go on with things, knowing. Knowing everything is most likely about to change, but until I hear the words, I'm okay.

A few weeks before my appointment, I was on a lovely hike in Pinnacles National Forest.

A few weeks before my appointment, I was on a lovely hike in Pinnacles National Forest.

The Why.

When I started my e-mail list to keep friends and family informed as I went through treatment, I thought it would end there. Then people started asking if they could forward my e-mails to friends and even asked if I planned to publish my story. No, I hadn't considered it... until now. 

While I'm starting with my story, I hope to share others stories of the #flippedswitch moment. If you want to share your moment, find me on Instagram, Facebook, or send a message

I'm now on the other side of treatment, but will be sharing stories from the beginning to now, to beyond. While I was able to e-mail those close to me during treatment, I wasn't ready to create a more public space at that time. 

I plan to let this space ebb and flow organically. I look forward to connecting with you!