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

I can't stress how important it is to check your breasts regularly. Honestly, I rarely did before, but one day I found a lump. In January my doctor's said my tumor was 1cm. One month later when I had my mastectomy it had grown to 1.7cm and there were two other tumors that were .2 and .3cm. Catching it early when it was stage 1 saved my life.

Below is one of the best self-exam videos I've seen. It was made by an Argentinian Breast Cancer charity to demonstrate the regular checks women should be doing while skirting censorship of women's breasts by social media. If you are in a relationship, have your partner help you. Men can get breast cancer, too. Please be sure to check yourself once a month.



7/6/16

Love this girl.

6/28/16

Warning, its getting graphic. Keeping it 100.

Constipation is one of the worst side effects of antibiotics and pain meds. Beware, Dulcolax and some other laxatives can have you running to the bathroom every 10 minutes or sharting your pants. Senna and stool softeners eventually loosen things up but plenty of fiber in your diet can really help you get back to being regular. Chia pudding (chia seeds soaked in almond/soy/milk) with some fruit and nuts is a sure fire way to get everything working smoothly again.

6/25/16

Ack, what happened!?! I have completely neglected updates on this blog, partly because it's been hard to make the time and once I was feeling better I was back to over-extending myself and trying to be "normal" again. I am not Wonder Woman. Hard to admit, but I'm finally learning to say enough. My stubborn Irish side didn't want to let cancer slow me down, so I kept trying to work full-time, volunteer, and keep my side business going. Too many things fell through the cracks, so I'm finally learning to let go and hand off responsibilities to others who want to help. I've been spending more time with family and friends which has left less time to be online, but I do plan to catch up, as sharing this journey has really helped me get through it.

It's amazing and surreal to say I HAD cancer. Recovery has been complicated but I'm getting closer to the end. The next step is Reconstruction Surgery. I'm nervous and excited to replace the expander with the permanent implant tomorrow. Excited to have this uncomfortably inflated space holder out and nervous to see how the implant feels. My fear is that the implant will still hurt as much as the expander. We'll see, I'm hopeful it won't.

Wish me luck!

For those that have asked to help... if you want to bring us dinner, take my kids, or visit me and bring me lunch feel free to sign up on the calendar here:
https://mealtrain.com/mdo4r7

6/22/16

My oncologist called me after dinner and the genetic testing of the tumor came back as "low" so there is no benefit to chemo. I will be taking Tamoxifen soon instead. Bring on the hot flashes.

My genetic testing is partially in, and I'm negative for BRCA 1 and 2 so I get to keep my ovaries!

Recovery is slow, as I'm having exceptionally more pain and sensitivity than most of my plastic surgeon's patients. This weekend I fainted twice and have had bad dizziness spells. Doctors think its the combination of my low blood pressure and the meds. So I need to stop the Gabapentin (nerve pain) and flexeril (muscle relaxer) and only use over the counter ibuprofen. :(
I'm getting a blood pressure monitor to better track what's going on, increasing salt in diet and drinking more fluids, along with eating smaller meals more often to help.

I have a few more appointments with plastic surgeon to fill the expander and then I'll recover for a few months before the next surgery to exchange the expander with the permanent implant.

I start work tomorrow, but will be working from home for a week since I can't drive until the fainting/dizziness is resolved.

3/7/16

I had my two week follow up today with my surgeon. My drainage has decreased to 5-10ml's for the last few days, so the drain is coming out! After two weeks I can finally take a shower!!! My plastic surgeon didn't want to risk infection from any thing getting in the drain tube so she advised "No showers/baths" until the drain was removed. She said some patients get creative with saran wrap or garbage bags and tape, but that seemed too complicated so I stuck with sponge baths.

I was really nervous about getting the drain removed. Terry and Scott did a great job distracting me, talking about everything except what was happening, which was really helpful. My pain meds make me a little wonky so when I felt a poke I thought it was my doctor injecting an anesthetic to numb the area, but she was actually cutting and pulling out the sutures. I was thinking, if I can feel the tube coming out with anesthesia, it must be really painful without. In truth, no anesthesia was given and it wasn't that bad. It was just weird to feel the tube sliding out from under my skin. It wasn't nearly as bad as I'd imagined. (I have read on forums that some drains have barbs on the end that hurt like hell when they are removed. Talk to your doctor about what kind of drain you have. You may need to take something before hand to take the edge off.)

The combination of drugs has made me nauseous, light headed and has increased my insomnia. I feel like I'm walking around in a foggy haze and not able to think clearly. I've felt dazed and confused but not in a good way, more in a paranoid the cops are coming way. My doctor recommended backing off of the narcotic pain killers and only using them as needed and instead scheduling the muscle relaxer into my medicine routine to help control the pain. After the mastectomy, my plastic surgeon put the temporary expander under the muscle that will be filled gradually and then replaced with the implant. I can feel the muscles tightening around the expander which has been painful and sensitive to the touch. The muscle relaxers should help everything loosen up and hurt less.

When I'm up and active for too long I get fatigued and more sore, so I'm still trying to stay in bed as much as possible. I've been listening to podcasts and farting around on the inter webs. "It's Time" by Imagine Dragons really struck a chord with me and when I looked up the video I found this non-official one below and learned about Tyler Robinson. If you don't want to cry you can watch the band's video here https://youtu.be/sENM2wA_FTg to hear the song, otherwise check out the home video below that Tyler's brother took.

"It's Time" by Imagine Dragons

So this is what you meant
When you said that you were spent
And now it's time to build from the bottom of the pit, right to the top
Don't hold back
Packing my bags and giving the Academy a rain check

I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night

It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am

So this is where you fell
And I am left to sell
The path to heaven runs through miles of clouded hell right to the top
Don't look back
Turning to rags and giving the commodities a rain check

I don't ever want to let you down
I don't ever want to leave this town
Cause after all
This city never sleeps at night

It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am

It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am

This road never looked so lonely
This house doesn't burn down slowly
To ashes
To ashes

It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am

It's time to begin, isn't it?
I get a little bit bigger but then I'll admit
I'm just the same as I was
Now don't you understand
I'm never changing who I am

2/18/16

My friend Julia came up with a great hack to clean my hair while I'm stuck flat on my back. She put down a shower curtain and washed my hair on the floor, rotating towels to soak up the water. She even brought her new baby to keep me entertained. Clean hair never felt so good!



2/13/16

It's annoying that most of the products targeted for breast cancer patients are not in my demographic. Sadly, I know too many people in their 30s and 40s dealing with cancer but in all of the pamphlets and marketing materials, everyone is in their 60s and 70s.

Since I can't shower until I get the drain out, they sent me home with this dry shampoo to wash my hair. I'm not sure if it only works on short hair but after using this and blow drying my hair looked like I had an inch of grease at my roots. Complete product fail.

2/13/16

It's been up and down. Being confined to bed for the first week was really limiting, but necessary to save as much skin as possible and hopefully save the nipple that had been biopsied from the inside. In order to get clear margins my surgeon had to cut really close to the skin during the mastectomy. Turns out I also have pretty thin skin, so there were a few sections my doctors were concerned might lose blood supply and become necrotic tissue. After my first follow up appointment they said it was looking good and I could move around more. But I overdid it and gravity took a nasty toll on my boob and my drainage doubled, so now I'm bedridden by choice.

I have to keep the drain in as I have too much fluid still coming out. The drain is one of the painful parts, especially at night when I'm trying not to sleep on it. My shoulder feels like it was dislocated as they had my arm out perpendicular to my body for the lymph node removal. I got a higher dose of pain meds that I hope will help. Right now I feel like the end of this video...

"This Too Shall Pass" by OK Go https://www.youtube.com/watch?v=qybUFnY7Y8w

You know you can't keep lettin' it get you down
And you can't keep draggin' that dead weight around.
If there ain't all that much to lug around,
Better run like hell when you hit the ground.

When the morning comes.
When the morning comes.

You can't stop these kids from dancin'.
Why would you want to?
Especially when you're already gettin' yours.
'Cause if your mind don't move and your knees don't bend,
well don't go blamin' the kids again.

When the morning comes.
When the morning comes.

When the morning comes.
When the morning comes.

When the morning comes.
When the morning comes.

Let it go, this too shall pass.
Let it go, this too shall pass.

Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)

Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)

Hey!

Let it go, this too shall pass.
(You know you can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)

When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)

When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)

When the morning comes.
(You can't keep lettin' it get you down. You can't keep lettin' it get you down.)

When the morning comes.
(You can't keep lettin' it get you down. No, you can't keep lettin' it get you down.)

When the morning comes!

2/11/16

I had my follow up appointment today with my surgeons and the pathology reports are in...
We caught it early, it’s stage 1, they removed enough tissue to have clear margins, my lymph nodes came back negative for cancer. I have some complications from the surgery that I'll go into later but I have to keep my drain tube in for another week. I have some new drugs to try to help manage the pain better.

I meet with my oncologist next week to see what the next steps are. I’m really hoping I get to skip chemo and radiation and go straight for the drugs that cause menopause! Woo hoo, bring on the hot flashes. Ugh.

2/11/16

I'm pretty much sleeping all of the time and getting up to walk to the bathroom every few hours when I get pain meds. My plastic surgeon is concerned about the thinness of my skin, so to try to make the implant as successful as possible, I need to be flat on my back 95% of the time trying to keep the area as warm as possible to increase blood flow to the area. I never sleep on my back so it's a bit uncomfortable but if it can save my nipple and skin I'll deal with it. The heater is cranked up in my room and I have a mound of blankets to keep me warm. Downside... I'm super sweaty stinky, but can't take a shower or get the incision wet until after my follow up appointment next Thursday. I'm hoping to have some results early next week to know what stage the cancer is or if it spread to my lymph nodes. Just sleeping as much as I can now.

2/7/16

Normally you can only have one relative at a time in the pre-op room, but my Aunt Terry was able to get both my Mom and Dad in. I love my parents, but I guarantee I was the only 41-year-old being serenaded with "Hush Little Baby, Don't Say a Word" while waiting for a mastectomy. Facepalm.

I completely don't remember putting on the hairnet, so the anesthesia must have been kicking in. I do remember being wheeled into the operating room. As they slid me onto the operating table, my anesthesiologist said we heard you like listening to music, do you prefer Spotify or Pandora? Pandora! What station? Pop Punk Radio! I recognized the song that started playing and then was out cold. I can't recall which song it was, but I so wish it could have been "I Wanna Be Sedated". The Ramones classic should be a hospital standard.

Post-surgery, my Dad (the selfie king) was standing by to capture the moment. I was happy to oblige. He didn't see the first pose until later.

PSA: Don't watch "Guardians of the Galaxy" after a mastectomy; comedy hurts, laughter is not the best medicine.

2/4/16

The countdown is on. My surgery got bumped up to 11am tomorrow. Today I had to go to Nuclear Medicine and get 3 radioactive injections which I'm pretty sure means I will be developing superhero powers any minute now. Or it's to see which lymph nodes the area by my tumor is draining to so they can determine if the cancer has spread or if it is contained in the tumor.

Technically I'm only supposed to bring loose clothing, ID, insurance card and payment for deductible (no jewelry, no personal belongings), but since I'll be staying overnight I'm packing some warm and comfy supplies (hospital AC is usually too cold for me).

• button down shirt
• comfortable pants
• warm comfy pajamas
• pillow
• warm soft blanket
• Kleenex
• toothbrush and toiletries
• camera
• water bottle
• throat lozenges
• chapstick
• scarf/soft jacket
• Comedy DVDs (I got these free from work)
• ear buds and music
(...I know I'm forgetting something)

Off to bed for me. I'll try to have someone post an update after surgery. THANKS FOR ALL OF THE SUPPORT!!!!

2/3/16

The day before my surgery I had to go to Nuclear Medicine to get 3 radioactive injections. I'm a little disappointed I didn't develop any superhero powers. The radioactive injections are typically a blue dye injected near the tumor to locate sentinel lymph node.

My doctor gave me the option to have my boob numbed by 3 injections of anesthesia first or just the 3 radioactive injections. 6 shots versus 3 shots. I hate needles and since the needles were the same size, I went with 3 stabbings instead of 6 to speed things up. Since I'd survived the ultrasound core needle biopsy and stereotactic breast biopsy, I figured how bad could it be.

He told me they progressively get worse. The first injection barely hurt and was followed by a little burning sensation. I said "Oh that wasn't bad at all". Then the second shot, "that definitely hurts more than the first" to which he replied slowly in a kind voice "yeeeaaaah". Then the third shot, "oh crap that burns!" and he replied "I told you it would get worse" in a sympathetic voice (he was pretty calming through it all). After the 3rd shot I regretted not getting the anesthesia. If I had to do it over again, I'd have asked to numb the area for the 3rd shot as that was by far the worst.

The radioactive fluid was injected around my tumor so my surgeon could follow it to determine where it drained. If the cancer cells had developed the ability to spread to other parts of the body they would go to those lymph nodes first. Tomorrow my surgeon will identify and remove those nearby lymph nodes and then test if cancer cells are present. More info on sentinel node biopsy here.

The whole time I was there I had the song "Radioactive" stuck in my head.

"Radioactive" by Pentatonix and Lindsey Stirling (Imagine Dragons cover)

Whoa, oh, oh
Whoa, oh, oh
Whoa, oh, oh
Whoa
I'm waking up to ash and dust
I wipe my brow and I sweat my rust
I'm breathing in the chemicals

I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa

I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

I raise my flags, don my clothes
It's a revolution, I suppose
We're painted red to fit right in
Whoa

I'm breaking in, shaping up, then checking out on the prison bus
This is it, the apocalypse
Whoa

I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

All systems go, the sun hasn't died
Deep in my bones, straight from inside

I'm waking up, I feel it in my bones
Enough to make my systems blow
Welcome to the new age, to the new age
Welcome to the new age, to the new age
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive
Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I'm radioactive, radioactive

2/3/16

Tomorrow is my last day of work. My surgery got bumped up to 11am on Thursday, so now I have to go in Wednesday to do the pre-surgery injections (which I have no idea exactly what those are yet). I've been in a mad dash to get all of the necessary paperwork for my medical leave of absence submitted. After finally getting my request to the right department at Kaiser I got the completed "Medical Leave Certification Form" back today. My doctor said we won't know if I need chemo until surgery when they will see if the cancer has metastasized or spread to my lymph nodes, but just seeing this 'No' checked gave me a little more hope that the mastectomy might be all I need. Knock on wood.


2/1/16

Thank you so much for your messages, texts, calls and emails. I really appreciate every one. I'm sorry I haven't been able to respond or return all calls but I will try to catch up this weekend. Weekdays are pretty much shot, I'm out of the house 7am-6:15pm and pretty much fall asleep with Zoe every night for a few hours before hitting the sack. Your well wishes, thoughts and prayers are helping keep my spirits up.

We don't need help right now, but after surgery on Feb 4th we will be asking for and accepting all of the help we can get. More updates this weekend.

Feeling the love,
Megan

1/26/16

I found a lump the day after Christmas. A few days later I had an ultrasound needle biopsy that left a titanium marker clip in the shape of a cancer ribbon near the lump. After that I had a Stereotactic Core Biopsy that focused on the area with microcalcifications we found in the mammograms. That biopsy left a titanium marker clip in the shape of the letter "M".

I was eating lunch with a co-worker when I got the call. "Is this a good time to talk?" is never followed by good news. "We found cancer".

The good news is the "M" microcalcifications area turned out benign. The bad news is the cancer ribbon tumor area came back positive for cancer (I have a titanium cancer ribbon marking the spot where I will be actually fighting cancer).

I met with my surgeon, Phd MD Grace Tay, and she is great. My step-mom's sister, Terry, actually works in our surgery clinic and knows (and highly recommends) Dr. Tay. Terry came to our appointment with us and she was a tremendous help. Terry can schedule the best team of nurses and anesthesiologist when it's time for my surgery (so awesome to have someone on the inside). I feel like I'm in really good hands.

"Infiltrating ductal carcinoma"
The tumor is just over 1cm and grade 2 (moderately growing cancer cells). We don't know what stage it is, if it's metastasized, or if I need chemo. We won't have those answers until surgery.

I have two choices:
1. lumpectomy plus 5 weeks of daily radiation
2. mastectomy (with or without reconstruction)

The immunohistochemistry came back positive for estrogen and progesterone receptors making me a candidate for tamoxifen. This is really good news because breast cancers in younger women are more likely to be fast-growing, higher grade and hormone receptor-negative, making the cancers more aggressive and more likely to require chemotherapy. With my cancer being estrogen and progesterone receptor-positive and being a moderate grade, my chances of chemotherapy decrease. After surgery I will need to be on medication for 5 years that has menopausal side effects that will most likely lead to early menopause.

I met with my plastic surgeon to discuss reconstruction options. After my Dr. Google research I was really hoping for "muscle-sparing" free TRAM flap reconstruction. It is a single but much more difficult and time-consuming surgery requiring a longer recovery. If done well it is a one and done surgery and should not need more attention over the course of a lifetime. The other reconstruction option is an implant that involves two surgeries that are easier with shorter recoveries but over time are more prone to problems and infections and additional procedures to correct those problems.

Unfortunately, I'm not a candidate for the flap reconstruction so my choices are mastectomy (with implant or no implant) or lumpectomy with radiation. I have really strong reservations about the long term effects of radiation. I'm 41 now. My fear is doing the lumpectomy with radiation only to have cancer come back in 5-10 years and to have limited options then due to the radiation damage.

So on February 4th, I'll be saying good-bye to my right boob as I know it with a mastectomy. I contemplated a double mastectomy, but I'm keeping lefty for now and trying to do genetic testing to see if I'm at risk for ovarian cancer. I thought about no implant and not doing reconstruction, but in the end vanity wins, I kinda like having 2 boobs.

Timeframe:
12/26/15 I found a lump
12/29/15 Dr. confirmation
12/30/15 mammogram, ultrasound, and ultrasound needle biopsy
1/5/15 stereotactic core biopsy
1/7/15 "Is this a good time to talk?" It's cancer.
1/12/15 met with surgeon
1/14/15 met with plastic surgeon
??? When/how/what do I tell my kids?
2/4/15 mastectomy +6 week recovery
4-6 months later reconstruction surgery +6 week recovery

In 8 months I hope to be cancer free and have 2 boobs again. I'll be blogging my progress, inevitable ups and downs, and sharing resources as I find them. Feel free to add your email to follow along on this countdown.

1/17/16

PSA: If you ever have to get a stereotactic breast biopsy make sure the boob they are not stabbing is safely tucked away and protected from the hole.

My mammograms and ultrasound showed a suspicious mass and microcalcifications, a tiny cluster of small calcium deposits that are associated with extra breast cell activity and may indicate early cancer.

There are two types of stereotactic breast biopsies: vacuum-assisted device (VAD) which uses a vacuum powered instrument to collect multiple tissue samples during one needle insertion and core needle (CN) which uses a large hollow needle to remove one sample of breast tissue per insertion. It's only been 4 days since I had mine and I have completely forgotten which one I had, hence why I'm starting this blog so I can remember this crap.

The most uncomfortable part of the procedure is supposed to be neck and back pain from lying on the concave table. They warn you that it will take several attempts to get your boob in the right position before they start collecting tissue samples. It took 8 repositioning and scans to finally find the right angle to get to my lump. On the 2nd repositioning the nurse caught my other nipple in the machine, slicing it open and taking a nick out of my left nipple. "She didn't see it". The pain from that was so bad that the actual stabbing of the biopsy completely paled in comparison. The whole thing took almost an hour on the table.

As I laid on the table in blood, tears and searing pain, my doctor said they were able to get the samples they needed and they were going to insert the titanium marker to indicate the area they biopsied. I had to wait another 15 minutes in the hole with applied pressure to stop the bleeding from the biopsied area. I was listening to my Thumbprint Radio Station on Pandora and Madilyn Bailey's version of "Titanium" came on.

I have a new theme song.

You shout it loud, but I can't hear a word you say
I'm talking loud, not saying much
I'm criticized, but all your bullets ricochet
you shoot me down, but I get up
I'm bulletproof, nothing to lose

fire away, fire away
ricochet, you take your aim
fire away, fire away
you shoot me down, but I won't fall
I am titanium
you shoot me down, but I won't fall
I am titanium
Cut me down, but it's you who'll have further to fall

Ghost town and haunted love
Raise your voice, sticks and stones may break my bones
I'm talking loud, not saying much
I'm bulletproof, nothing to lose
fire away, fire away
ricochet, you take your aim

fire away, fire away
you shoot me down, but I won't fall
I am titanium
you shoot me down, but I won't fall
I am titanium
I am titanium
I am titanium
Stone hard, machine gun
Fired at the ones who run
Stone hard, as bulletproof glass

You shoot me down, but I won't fall
I am titanium
You shoot me down, but I won't fall

I am titanium
You shoot me down, but I won't fall
I am titanium
You shoot me down, but I won't fall
I am titanium
I am titanium

Written by Sia, David Guetta, Giorgio Tuinfort and Afrojack




I found radiologyinfo.org a great resource for Stereotactic Breast Biopsy if you need more information.

1/6/16

Today was the first time I heard the word "tumor" and I kinda freaked the fuck out. I'm not sure what else I thought this lump/mass would be, but for some reason the word tumor just sounds a hell of a lot scarier than lump. I think I might start biting my nails waiting for the results to come in.

1/6/16