3rd round of chemo plus Zarxio shots wiped me out last week. I could barely get out of bed for several days. People ask me how I find humor and stay positive, and I think “I have to”. The thought of not being there for my kids, shit, I can’t handle that. So I have to do whatever I can to get through this, again.

And then Taylor Swift drops this song she wrote about her mom’s cancer recurrence. I can’t stop 😭😭😭😭😭. I’ll be listening to "Lover" on repeat. Taylor Swift, please tour soon!!! My daughter and I are waiting to buy tickets as soon as I kick cancer's ass.

Listen here: Soon You’ll Get Better (feat. The Chicks) by Taylor Swift

Soon You'll Get Better
The buttons of my coat were tangled in my hair
In doctor's office lighting, I didn't tell you I was scared
That was the first time we were there
Holy orange bottles, each night, I pray to you
Desperate people find faith, so now I pray to Jesus too
And I say to you...

Ooh-ah
Soon, you'll get better
Ooh-ah
Soon, you'll get better
Ooh-ah
You'll get better soon
'Cause you have to

I know delusion when I see it in the mirror
You like the nicer nurses, you make the best of a bad deal
I just pretend it isn't real
I'll paint the kitchen neon, I'll brighten up the sky
I know I'll never get it, there's not a day that I won't try
And I say to you...

Ooh-ah
Soon, you'll get better
Ooh-ah
Soon, you'll get better
Ooh-ah
You'll get better soon
'Cause you have to

And I hate to make this all about me
But who am I supposed to talk to?
What am I supposed to do
If there's no you?

This won't go back to normal, if it ever was
It's been years of hoping, and I keep saying it because
'Cause I have to

Ooh-ah
You'll get better
Ooh-ah
Soon, you'll get better
Ooh-ah
You'll get better soon
Ooh-ah
Soon, you'll get better
Ooh-ah
Soon, you'll get better
Ooh-ah
You'll get better soon
'Cause you have to

8/23/19

First Chemo date with my dad. Expected time 3 hours. Taxotere and Cytoxan were on the menu. My IV went in smoothly and the first half hour I got some anti-nausea medicine. Turns out I'm allergic to the Taxotere. It caused a reaction that felt like a heat wave running up my arm, across my stomach, up my chest, gave me a headache and then excruciating back pain. They stopped medication for a 30 minute saline break and gave me more medicine to counteract the reaction, then started again at a lower dose. Luckily that worked and no more reactions. The Cytoxan was a dream, no reaction at all. Actual time was 4.5 hours including 15 minutes of picking up prescriptions.

When I posted on Facebook it tried to auto correct Taxotere to “taco tree”. My brother-in-law Dan sent me one; way more preferable than Taxotere.


7/9/19

This guy has been my absolute rock. My husband, Scott, picks me up when I'm down, let's me use him as a punching bag, and is always my number one cheerleader. This was my first walk post second surgery. Made it around the block. Hoping to walk more each day.


Surgery was 2 days ago and it got bumped up several hours so we dropped everything and hopped in car as the operating room was available earlier. Not how we planned to celebrate our 13th anniversary, but hopefully this will allow us to celebrate decades more together. #oneboobless #fuckcancer #happyanniversary

6/6/19

5 surgeries ago I learned I have vasovagal syncope response to IVs getting put in after I fainted. For some it's triggered by the sight of blood or extreme emotional distress. Symptoms include paleness, nausea, sweating, a rapid heartbeat, and fainting. I always let them know, but even really experienced nurses have said my veins roll and it takes 15-20 minutes to get an IV in, and I have to lay back and look away until they finally get it in.

For the past 2 surgeries what I can't understand is my reaction to having the IVs removed. You would think leaving the hospital wouldn't be extreme emotional distress, but when I was ready for release they brought a wheel chair to take me down to my ride, they took out the IV and left to call my dad that I was on my way down. I had this crazy reaction and I just started sweating profusely. I had sweat dripping down my face, down my chest, down my back, it was as if I was in the shower. I’m looking around the ward and I can’t see any nurses and in my head I’m screaming “My brows! My brows! Not my brows!” as I had just had my eyebrows microbladed and you're not supposed to sweat in the first 10 days.

She came back and gave me a blower that help me to cool down before she wheeled me down to my dad's car where I cranked the AC. Who would’ve thought that leaving the hospital would make me break out in a freakish sweat. For my second surgery, I asked for the blower before they removed the IV. The nurse was really confused as she'd never seen that before, but right on cue as soon as the IV came out, I was dripping in sweat. The blower saved me giving myself a shower the second time. (I'm writing these chronologically but have already had 2 rounds of chemo and haven't had the sweat showers when those IVs are removed. Still baffled why it only happened after both surgeries).


6/5/19

This is what cancer looks like. Coming home nauseous covered in ice packs for relief from major sweatfest/hot flashes after having a breast chopped off. Okay it was a foob, but they removed the implant, 3 cancerous tumors (THREE! not just the TWO I found), nipple, and A LOT of overlying skin.

My plastic surgeon was really concerned she wouldn't be able to sew me back up. I'll post more on that later, but I have a little flap of extra skin in my arm pit now that feels awkward AF. I was a little surprised they sent me home the same day. My first mastectomy was an overnight in the hospital, but this time they just kicked me to the curb with some painkillers, ice packs and puke bags.

I did come home to these great cards my kids made to lift my spirits up (it worked, I cried). 3 years of tamoxifen and besides being pregnant, this is the heaviest I've ever been. This is me, this is cancer. I'm hoping after the next several months of chemo and radiation, I can start to work on a whole new healthy, cancer free, me.


6/4/19

I can't do any repetitive movements with my right arm, so I enlisted my daughter to help me cut my hair.

Not bad for a 10-year-old.

#youtubehacks

Luckily, I have a hair brush dryer so I was able to blow dry my hair with one arm after getting my last shower before surgery #2.
6/3/19

I had my drains removed on Friday 5/24, 11 days after surgery. Over the holiday weekend I had a seroma that formed after the drain was removed that caused a lot of pain. It felt like I had a golf ball in place of the new cavern of my arm pit that was pushing the scar open from the inside.

My surgeon said it was normal to have excess fluid build up after the drain was removed. If it didn't go away on it's own, he would drain it on during the next surgery.
After seeing the gnarly scar in my arm pit, I requested to have my previous plastic surgeon do the closure for the completion mastectomy. My surgeon said they don't usually have a plastic surgeon for this procedure and asked how important it was to me if it meant delaying surgery. He said he is pretty good at closure which I screamed in my head "have you seen my arm pit?" I don't care what it looks like to other people, but I have to look at this for the rest of my life so I want it to be as good as it can be. I was adamant to get my previous plastic surgeon involved. Luckily, my plastic surgeon and surgeon where able to find a date before their summer vacations so June 4th my foob comes off. (not a typo foob = fake boob)

We got a membership to our neighborhood pool. Kids will be able to come here on their own all summer. Summer equals recovery, chemo and radiation for me; pool, pool and more pool for the kids.

5/28/19

I posted this on Facebook: "First night without my private nurse/gardener/housekeepers/chai latte deliverer, Pat and Tim. Alayna has taken over nursing duties and helped me with my meds and drain. Hope to have pathology results next week."

I have received so many thoughtful and positive comments that I dearly appreciate. This poem in response really touched my heart:

Those firsts that you don’t want
Those firsts that will make you want
To get stronger
Wiser, kinder, more connected
More present
Than without those firsts
When in all of it
Its in the way
An obstacle
A Mount Everest
Greatful for all sherpas
Sharing the load
Sherpas knowing the wind
the path the goal
One step at a time
You’re getting there
Those firsts you don’t want
But they’re now a stronger you
A more present you
Together
Sherpas
Firsts
You
Love
-Jesper Enevold

5/20/19

My surgeon called today with the initial pathology report. The two tumors in my underarm that they thought were 1.6 and 0.9cm and 1cm apart were actually just one 3.2 cm tumor. They ended up removing 13 lymph nodes that all came back negative for cancer! Great news!! The cancer didn’t spread? What stage is it? Jury is still out.

Since they didn’t find cancer in the lymph nodes it looks like it didn’t spread out of my underarm. But both masses on my breast that didn’t “feel like cancer” are cancer. They are considered T4 “skin nodules” (which doesn’t mean stage 4). They can’t determine what stage I am until those are removed and sent off to pathology.

So, that means I need to have the implant removed as well as all of the skin that was near those masses (pretty much another mastectomy). There are a couple of other weird lumps that I’ve felt so it’s possible the cancer did spread around my implant and hopefully no further but we won’t know until they get in there and cut everything out.

I just don’t have the words, so again, I’m having a hard time talking about this until we know more. What I know is the tumor board meets tomorrow and they will discuss my case, and my surgeon will call me on Wednesday with more news. I see him on Friday to take the drain out, so I’m hoping this week will have some answers on next steps.

For now, I’m trying not to freak out, watching movies with the kids and getting cuddles from my furballs until I have more news with actual decisions to make. To be continued…

5/20/19

Last Thursday I found another lump. It felt like a BB, smooth and hard, lower than the first lump and more towards my underarm where the 2 cancerous tumors are. I called my doctor to see if I should come in and he said to remind him on Monday and he’d take a look at it. On Monday he decided that he would incise both masses so we could determine what they are. He kept saying they don’t feel like cancer; they’re more smooth and rounded compared to the tumors in my arm that are more jagged and rough feeling and definitely felt like cancer.

Despite the radioactive dye and a second dye he injected during surgery, he was unable to locate the sentinel node which they planned to remove to determine if the cancer had spread. He ended up doing a lymph node dissection and removed the tumors along with numerous lymph nodes that were all encased in a fat pouch in my underarm. The lumpectomy recovery would have been 2 weeks but adding the lymph node dissection bumps recover out to 3 to 6 weeks.

Holy shit that’s a big scar! I thought the incisions on my breast would be much smaller. Had I known the length, I would have insisted on my plastic surgeon from before patching me up. The underside of my arm is so numb and I’m having all sorts of pain from the severed nerves. I have to stretch my arm over my head several times a day to prevent the skin from adhering to the muscle since there is no more fat between the two. My right hand is colder and repetitive motions are out, so I’m tpying and texting one handed when I can and with lots of typos.

My Dad and Step-Mom were with me for surgery and have moved in so I have around the clock care which has been so great. My Mom just had double knee replacement surgery and can’t fly for 2 months so its been hard on both of us only being able to support each other remotely (although I know it’s been much harder on her, as having your kids suffer is the absolute worst). Scott left for Montreal for work last night, so my Mother-in-Law was able to fly out to help while he’s gone. I am so grateful for all of the support from family, friends and co-workers. I can’t thank everyone enough. More soon.

5/19/19

Last Thursday I had a Bone Scan and CT Scan. I had a small amount of radioactive tracer injected and several hours later they scanned my entire body. This bone scan is looking for possible cancer in areas where too much or too little of the tracer has been absorbed by the body. For the CT scan they inject a contrast dye that combines X-rays and a computer to create pictures of your organs, bones, and other tissues. I asked how long it takes to get results and the nurse said, they will send to the radiologist that day to review and they will send to my doctor.

I thought I might get a call with results Thursday night. Later that night I stepped on our digital scale and was shocked to see I had lost 10 lbs since I last weighed myself 10 days prior. That can’t be right. I tried two more times and got the same low number. I yelled at Scott and he came in and weighed himself and said, that seems right.

[voice in my head from old nurse] “Are you losing weight… do you have joint or bone pain?” well shit, now I do. I freaked out and started to expect that dreaded call, “is now a good time to talk”? On Friday, no doctor calls, but the preop surgery nurse calls to go over the checklist to make sure I’m cleared for surgery. I told her about the weight loss and that I was concerned over results as I hadn’t heard from doctor. She says well I don’t want to say it wrong, but you’ll need to talk to your doctor about the results. What?!? What the hell does that mean? We get through the list and circle back on a few issues, resulting in her saying she needs me to take another blood test, get an EKG and see my GP doctor in person to make sure I’m clear for surgery. Wait, delay surgery why? No real explanation other than I need to do these tasks first. This conversation happens 1 hour before I’m leaving to catch a plane to Seattle for the weekend. No calls from my doctor so I spend the weekend thinking the cancer has spread and I eat like a pig trying to get my weight back up so that isn’t an issue to delay surgery. I get home Sunday night and step on the scale and I’m back to my original weight. I yell at Scott. He comes in and weighs himself and then says, oh well I guess the calibration was just off last week. Christ almighty, why couldn’t you have mentioned that before I spent the weekend thinking I was dying?!?!

On Monday I emailed my doctor and breast care coordinator explaining I hadn’t lost weight and that shouldn’t be a concern to delay surgery. My doctor was booked so I couldn’t see him in person but I asked about the scans and he emailed that they looked fine. ?!?!

On Tuesday, I had a PT appointment to get a baseline on my shoulder mobility in case I get frozen shoulder again with the new surgery. I stopped by my surgeon's office to request insurance paperwork for my medical leave and ask if my surgeon was going to call about the scans. They bring me back to an exam room and my breast care coordinator comes in and apologizes for not returning my emails or phone calls. I explain my concerns from the preop nurse and she says well the bone scan was fine, but on the CT scan we found an ovarian cyst which could be totally normal, although there is something on my thyroid that they are recommending I have ultrasounds to determine more on both. Ugh. More unknowns.

So my new plan, chill the fuck out, until I have more news to freak out to. We'll do more testing after I recover from surgery on Monday.

5/15/19

My Dad came with to meet my new oncologist Dr. Mala Reddy. I'm really happy with her. She meet with us for over an hour, answered all our questions and never rushed us. It felt great being listened to and heard.

"Infiltrating ductal carcinoma" again. The tumors are hormone positive Er+/PR+, HER2- again. Grade 2 (moderately growing cancer cells) again. We won't know what stage it is, if it's metastasized, or if I need chemo until the pathology report after surgery. So far it looks the same as the first cancer and in the same area so it's considered a local recurrence. With a mastectomy and no cancer found in the lymph nodes, about 5 out of 100 women will have a local recurrence in the armpit or the chest wall within ten years. Lucky me, I got both. Maybe I should play the lottery.

It's hard not to wonder whether my lifestyle has been a contributing factor to the tumors coming back (too much alcohol/sugar, not enough exercise). But breast cancer recurrence has nothing to do with lifestyle choices, character traits or emotional stress. Regardless, I'm going to try to make some changes to get my body in the best health it can be.

Pre surgery advice to follow:
• Get regular exercise
• Eat things that agree with me and that I enjoy
• Find the right balance of activity and relaxation
• Get as much restful sleep as I can
• Generally do things I enjoy

Lifestyle changes post surgery:
• I need to commit to lifting weights 3 times a week to help improve bone density. (Scott is more than willing to be my personal trainer, so I just need my future self to kick my present self in the ass and get off the couch and work out consistently)
• Need to find walking buddies to get out and walk more often. Anyone know of any buddy fitness apps? I used Walkadoo for a work challenge and I actually was out every day getting my steps, but it doesn't work with iOS anymore. I'm trying to find an app so friends near and far can connect and encourage each other to get more active.
• Diet changes. Not sure what yet, but trying to figure it out.

On Thursday 5/2, I'm going in for my first bone scan and CT scan to check for any other areas of concern that would warrant more biopsies. Until we get those results I'm trying to keep busy and not think or talk about it as there are too many variables and it's easy to wander down dark what ifs. It was reassuring that my oncologist said we did all we could the first time with what we knew. Medically they wouldn't have done anything different. Just the luck of the draw, no real reason for recurrence. Knock on wood it hasn't spread...

4/29/19

How did we get back here?

About a year ago I noticed a bump on my implant and that my scar tissue was feeling different. My oncologist retired after a heart attack and my care was transferred to a Physician Assistant. At my last two wellness checkups I brought up my concerns which were dismissed.

"Are you losing weight?" No. "Do you have joint pain or bone pain?" No. "Then it's probably just scar tissue or fat deposits". So as long as I'm not losing weight or having pain it's not cancer? "Yes".
All 3 areas grew and 2 were painful, so I found a new doctor and insisted on testing.

My cancer was hormone positive, so I'm on tamoxifen to suppress hormones which is supposed to prevent a recurrence. Fat necrosis was a more logical assessment but ultra sounds and MRIs can't tell the difference between fat necrosis and cancer, so the ever fun biopsies were needed.

It took an hour for the doctor to take 9 samples of the 2 tumors in my armpit as one was really deep and right on a muscle she didn't want to hit. She injected a ton of local anesthetic (which has made my thumb feel like it has carpel tunnel) and used an ultra sound to guide the needle to the right location. It sounded like a gun when she shot and pulled out samples to biopsy. Really weird feeling and experience. My arm kept going numb having to hold it over my head.
Needle biopsies were last Monday, on Wednesday they called me at work to let me know both tumors are cancer. It's been a mental rollercoaster to say the least. I went into today's appointment with surgeon prepared to say good bye to my new boob (look how pretty it is!) but now I may be able to keep it.

For now I'm just trying to get through surgery and the waiting game until we know more. I'm really hoping we can find some answers as to why my cancer came back, but more importantly figure out how we can completely eliminate it this time.

4/23/19

I have cancer. Again. :(

I've kinda been physically falling apart lately which led to lots of appointments and testing/biopsies. The 2 tumors in my underarm tested positive for cancer, the endometrial biopsy came back normal, so that’s a plus but still not sure what is causing my abdominal pain and other issues. The tumor board discussed my case and I met with my surgeon today to go over treatment options. After he did an exam, he said "that changes things". Luckily, in a good way. Because the lump on my breast is so far away from the 2 tumors, we may not have to remove the implant and any remaining breast tissue.

The plan is to remove the 2 cancer tumors in my armpit, some lymph nodes and the 3rd lump on the implant that's too close to the skin to do a biopsy. After surgery everything gets sent to pathology, we figure out what stage the cancer is and if it has spread to any lymph nodes. If all good, then radiation and next steps. If the lump on my implant is an aggressive cancer or if it’s spread we may have to remove the implant and determine next steps. Won’t know if chemo is recommended until after pathology report.

I meet my new oncology doctor tomorrow. Then I have a bone scan and CT scan scheduled for next week to see if there are any other spots that would warrant a biopsy. Surgery is scheduled for May 13.

"What do you need? How can I help?" Right now, I'm doing the best I can. Trying to stay positive and wrap up work and house projects before surgery. We don't need any financial assistance. My work has amazing insurance and medical leave coverage so we're incredibly lucky (THANK YOU PANDORA!). We will set up a meal train, so if you want to drop off food or come visit during my recovery that would be greatly appreciated. I'll send an update when the sign up is ready.

I truly appreciate all of the support from family, friends, work and acquaintances. I am having a hard time talking about it, it's much easier to write updates. Until we know more I'm trying to focus on the light and avoid the dark "what ifs".

For those that want more medical details (or want to see my boob) read the next "New Post".

4/23/19