High Tolerance

I’m watching as friends on Facebook have kids.

I catch myself scrolling more quickly when I see pictures, announcements, milestones – it’s a double edged sword.

One side cuts me when I feel what I’m missing.

The other side cuts me when I realize that I’m not a good enough person to put myself aside to be happy for them.

Realizing that you aren’t a good person can be humiliating, but also life-affirming somehow. Acknowledging this thought makes me feel like I'm being authentic to me - but still...not a good person.

Watching other people have these experiences makes me think of the continuous downgrading of the silver lining that I’ve been finding the last 4 years.

At first diagnosis, I wasn’t informed enough to be grateful because I didn’t know how bad things could get.

It’s funny now because then I was sad thinking that -post-mastectomy- I wouldn’t be able to breast feed. That’s no longer relevant.

Cancer started as a blip on the screen of my life – that was the original silver lining.

Getting over a hump to the other side – that’s a pretty good goal. 

Years have fallen off and now, my tolerance for bad things seems to have increased.

When I was leaving work for my biopsy in September of 2013, a colleague told me that it was probably a cyst filled with fluid that they would aspirate. 

“OMGGGG…that’s so gross! Where does the fluid go?” 

That was literally the worst thing I could think of at that moment. Four years later, I’ve experienced way grosser things….bone biopsies, a double mastectomy, drains, radiation burns, Faslodex shots (honestly…way grosser than they seem), going through menopause at 28 – it’s not pretty.

What holds it together is the stark realization that it can be worse…and that, for me, it will get worse someday.

This thought leaves me grasping at positivity straws everyday:

I still have my hair

I still have my mind

I can still walk, move, work, drive

I have my life, my family, my friends

I have the power of appearing normal

I want more than this – I want what I presumably could have had, but at the same time, I could not ask for more.

Surprise...

Somedays, when everything seems normal, I forget.

It's different from my daily, regular, forgetfulness.

On those special days, I go to work, I have a normal day, I laugh with coworkers (I'm super funny), I come home for dinner with my husband, and life is good.

It's not until I go upstairs and hop in the shower that it happens. I see myself in the mirror - I only have one boob.

I know that I should know by now, but I don't. The flat side of my chest - the horizontal scar - they remind me.

Planning Passion

A few months ago, I shared on Facebook that I'd contributed to the Kickstarter for Passion Planner in order to get a Passion Planner. I was so excited. If you don't know how Kickstarter works for products, you can pledge a certain amount towards a project and if it is funded, you can get one of the items (depending on the amount you pledged).

As soon as I got the email that it was funded, I felt anxious. I don't know what my passion is anymore. I scanned the PDF version of the planner and to my dismay, in order to use it, you need to identify the passion as your goal. I was hoping it might help me identify it...

I received the planner today, and instead of being excited, I felt sad and depressed. I wrote previously about going so far to preserve the mundane that I've lost sight of the big picture. I don't know what to do. I don't know how to use this thing.

Here is part of the problem:

Long Term Plans With Metastatic Breast Cancer:

1 hour in advance: Absolutely! Go for it!

1 day in advance: Great! Knock yourself out!

1 week in advance: Sure - you do you boo!

1 month in advance: Okay! But only if you don't have a scan.

3 months in advance: Gurl, you will definitely have a scan in this time, so don't book any flights...

6 months in advance: Maybe. Just maybe.

1 year in advance: Dream on gf!

5 years in advance: LOL.

So what am I supposed to do? 

What will my legacy be? What will I be remembered for? 

Before cancer, it was easy. I'd work, take care of my husband, and have kids. I'd take care of the kids and It would be awesome! My kids could be my legacy. 

Now I see how lame that is, I know it might not happen, and I have no ideas. 

Sometimes, it's hard enough to do the minimum to survive everyday.

I wish I had a solution - some sort of epic realization - to finish up this post, but I don't.

I'm not Pink...I'm Brown

I have the cancer, but the cancer doesn't have me - and this cancer is not pink, these scars aren't pink - they are brown.

Being newly diagnosed with breast cancer in the month of October was a torturous experience. I would liken it to an electric fence that shocks you when you touch it.  But the fence is everywhere...and it's invisible... AND it can sneak up on you at any time. 

Breast Cancer Awareness Month - something that is intended to be supportive and comforting can actually be a sad reminder that your life has changed in many ways that you cannot and will not ever recover. 

Even now, my third October living with breast cancer, the commercials, ads, Facebook posts...they wear on you. I have been lucky to have found it easy to recignize the positive intentions. It's always easy to appreciate the gesture, even if I'm not a fan of the manifestation.

1) Donate to an organization that has less overhead and truly funds breast cancer research (I wouldn't be mad if it was an organization focused on Metastatic Breast Cancer...). Or...donate to a smaller, more local organization, maybe one that provides financial and other support to patients in your area.

2) Don't pink for the sake of pinking. Just because there is a pink ribbon on an item, doesn't mean you need it. If you were going to buy it anyway, that's awesome, but there is no need to go out of your way! The item's purchase results in a small donation, if it's something you were not going to get anyway, why not donate the cost of the item?

3) Make awesome things happen on a micro level. If you want to do something for those living with breast cancer, why not start with people in your life, social circle, or community? Do something nice or helpful for that person. I'm a huge fan of small gestures and they make a difference - having been on the receiving end of many kind gestures in the last few years, I can assure you - it helps.

Not That Bad; Definitely Not Good

It's so much easier to share good news than it is to share bad news. Even if it is just slightly bad. Telling others makes it real-er than it was when it was just information rolling around in your head.

I got my PET scan results back and it wasn't good. It wasn't terrible, but it wasn't good. Having metastatic breast cancer creates a lot of roller coaster-like days...weeks...months...and being that I'm already inclined to being a dramatic, emphatic person...the roller coaster is definitely the kind with more serious height restrictions.

My PET scan showed spread and growth to more bones. I have to be grateful that I've dodged involvement by my vital organs, but that is still really hard. The doctor called me the Wednesday after my scan and gave me the news and I got a full report last Friday. That little spot in my right shoulder lit up (it had lit up before), I have new spots in a thoracic vertebrae, a tailbone, my pubic bone...and huge holes in mah swag. Seriously, not feelin' myself lately.

It's a huge sense of failure, it's impossible to not wonder if there was something I did or didn't do - was there something within my control that could have prevented the progression? Logically, I know there is not. In addition to the feeling of loss I feel for everything else, there's a sense of loss as I lose this one course of treatment and an option slips through my fingers.

My treatment is changing so it's on to the next. I can't start right away, because the treatment is for post menopausal women (which I am...thanks to DRUGS), but because of my age, they are appealing to the insurance company for me. Still no chemo, so I can be grateful for that.

CYBER🔪: Day 2

Yesterday was my second Cyberknife session. Two naps down...one to go. I spent most of last night laying down and throwing up water. 

It's not the most fun I've had...

...doing much better this morning. Just nausea. I really didn't want the anti-nausea meds the doctor offered so I've been hitting the ginger pretty hard. For the record, fresh ginger has been way better than the chews and stuff. But that makes sense, right?

Today I took off from work and will be kindly chauffeured to the hospital, I thank the universe for kind friends. 

I believe that the symptoms build and may get a little worse before they are better..

...the important thing is that today will be my last radiation session!

Cyber🔪

Well, I started Cyberknife today...three concentrated, one hour sessions of radiation that are supposed to be super precise.

Very high tech...

...I asked the therapist if I could sleep. She said that would be perfect. 

That...in case you were wondering...is the right answer. 

Besides, I was going to fall asleep as soon as I laid down anyway.

I returned to work after the hour long session. Now I am home, not feeling so hot. Nauseous, lower back pain, and super tired. I can't tell what's a side effect and what is not! Here is to me feeling better tomorrow and finding out that it was a fluke!

In cooler, happier news...the Hello Kitty balloon that a friend brought to the hospital when I had surgery is STILL FLOATING! She began her descent last week...and it super close to the ground...but she is STILL UP!

The top photo is Hello Kitty in November 2014, at City of Hope. Bottom left is Hello Kitty in January 2015, bottom right is Hello Kitty in February 2015, after I finished radiation to my chest. Here she is today...

She may be on the ground, but she is STILL KICKING! I was hoping she would make it through radiation...and she might. Hello Kitty is a survivor...she's not gonna give up...she's not gonna stop...

...SHE'S GONNA WORK HARDER.

Woohoo!

I haven't had a PET scan since the scan that nudged doctors to recommend surgery! I'm supposed to scan every three months, but...it took about six months for me to get around to my next scan. 

So I finally scheduled the PET and I went in on February 23. The Sunday before was hard, it was my first time doing the prep diet (no carbs...at all, no caffeine, no exercise, etc) on a weekend. Terrible idea. It's way easier for me to diet at work. I go in Monday, starving, only to be told that the nuclear medicine was an hour late, so I had to wait an hour to get injected. 

You know when you go somewhere and there isn't a public restroom...so you immediately have to use the restroom? I experienced this - I was immediately starving and sad. 

I also asked if my favorite PET tech would be doing my scan. They told me HE WASN'T WORKING. I was so bummed.

So I'm sitting there waiting, when all of a sudden, HE walks in. My fav Indian PET tech. This is my face:

I can't even tell you how upset I was. I assumed the lady at the front desk lied to me.

Until...suddenly, he calls my name. If you've ever been wound up ready to get rowdy, only to be pacified immediately, you understand why I was stunned into silence. So, I follow him silently into the room. I'm finally able to choke out, "They told me you weren't working today."

He kindly let me know that he was taking a regular break from PET scans, since they rotate areas to limit radiation exposure. But...since I had been so pushy, he came to start my IV. I can't tell you how happy I was. Seriously, I barely know the guy, but to see a familiar face that I trust, it was amazing!

The week waiting for results was really long. I had my standing appointment for my shots on Friday (last Friday), so I knew I'd probably have to wait until then. Only, I DIDN'T WANNA. I had become so nervous because of the huge span between scans. I was kicking myself for not remembering to mention getting a scan after surgery. In my mind, if something spread, it had a ton of time to grow and flourish. I was so scared, it was a rough week. I called the doctors everyday to ask about results. 

Finally, Thursday afternoon, the OC Oncologist called me. 

RESULTS: no new cancer. 

I was so happy, I cried. If you know me, that's not surprising, I cry all the time. I'm so relieved and so grateful. I'm still not cancer free, the tumor in my spine lives on...but I'll start radiation for that soon. 

Not so metaphorical fall

Hey....K here from a long, laborious two weeks of being at home, being fed while I lay in bed watching Netflix. Aside from the surgery that got me here, this is the life!

I think recovery has been going pretty well! If you're going to have a mastectomy, I strongly encourage you to do it prior to turning 30.

My husband has been really good with bandages, timing medicine, and drain duty. Drains are...gross. They look like the bulbs used to suck mucus from baby noses, except for the pointy part. I had four long tubes that attach the bulbs to me and there is about a foot of tube that is inside of me draining fluid.

I left the hospital with four drains and I was thrilled to get two removed on Tuesday, about a week after surgery. So happy. When we went to the plastic surgeons clinic after that, they told us they'd remove the rest on Friday and I was super bummed.

Other than that, I was feeling good, moving around more - pain was steadily decreasing.

Then, on Thursday morning, I fell down the stairs. Only half a flight, though. I'm super glad I didn't break anything and I didn't pull my drains out (all the way).

It was so depressing because I went from feeling pretty good to basically feeling like crap again. My left armpit got swollen, the drain site was super painful, and the drain fluid increased and turned pretty red. I think I overreacted a little because overall, I'm fine.

At Friday's doctor visit, they removed one more drain, now I just have one left. I'm counting the hours...

Deets

I've had a couple of friends ask for more details about my surgery next Monday. I hadn't posted because...

Here is what I know for sure:

I'm having surgery on Monday. It's at City of Hope. It will be first thing in the morning. I won't find out what time exactly until tomorrow (Friday) afternoon. 

I'm going to have a bilateral (double) mastectomy. 

On my left side, they will take some skin (because I have skin metastases) and all my lymph nodes. No reconstruction, because I will get radiation on that side. I'll be flat on that side.

On my right side, they will be testing the lymph nodes for cancer. If there is cancer, no reconstruction, I'll have radiation on that side too.

This is how I feel:

Pretty much sums it up.

When I Grow Up

For the past six years or so, I've been looking forward to growing up. This is different from growing old. I turned 30 in July but I still don't feel like an adult. I'm rarely calm, collected, or cool. I'm always running late, I'm always oversleeping or undersleeping - I just don't feel like I've got it together.

Someday, I want to be a MF adult who budgets, and decorates her house, and folds all the laundry when it's done. I want to be someone who can entertain, and remember to write Thank You cards and doesn't live paycheck to paycheck.

I don't think this is my calling...

Man, another outrageous gap between posts. I don't think this is my forte.

So, what's happened between now and July? It's still 2014, right? Well, I've been working full time, life has been great, and cancer has been sucking. Nothing new. Except there is something new. So here's what happened: I had another PET scan in August (OMG, so many months ago) and it did not show 100% improvement. The breast tumor continues to grow, although the tumor in my spine is getting smaller. So...we were at a standstill. The OC oncologist said surgery. I made an appointment with City of Hope (COH). The oncologist at COH decided to take my case to tumor board which I think is super rad. In the end, they also recommended surgery. Both oncologists that I've been working with recommend surgery. So surgery it is!

And here's where we had a teeny tiny problem. My breast surgeon at City of Hope asked me to come in to get a biopsy done. I went in and thought I was getting my left breast re-biopsied. I totally told everyone all about it. Imagine my surprise when I arrived at COH and found that I was getting a biopsy of my right boob. Because something shadowy showed up in the PET. So here are my issues:

1) WHY was this not on the original report - I'm kinda bummed about the radiologist's reading at Mission Hospital.

That's it. That's my only issue with this.

Anyhow, I full scale bawled at COH, in the Women's Center and they kindly brought in my fav doctor (who I asked for mid-blubber) to explain WTF was going on. I'm very, very, very grateful to the tumor board at COH for looking at my slides and pictures and catching that little spot. So I had the biopsy...and...

...just kidding. It's more cancer.

So now it's in both my boobs, ugh, disgusting behavior on both their parts - I'm very disappointed.
But it is all good, because I have a plan: we are doing a bilateral (double) mastectomy on November 10. That's right! One week from today.

This is the first time I'm ever having surgery, so I have no idea what to expect. Luckily, I've got a crapload of good, kind people who want to support me in ways I didn't even think of. A group of people set up a meal train for us, we have friends offering to stay with us to do the yucky post-surgery stuff (drains...ew)...and this past Sunday, an amazing friend got together a bunch of girlfriends to give me a surgery shower!

I had a blast and got to see lots of friends that I love all at once, which is such a fantastic experience. Aren't we cute?

When I think of all the kindness that everyone has shown me (strangers, family, and friends alike), it is so overwhelming. It really is. First, I sing this song in my head:

Then, I wonder what I've done to deserve it. You all are too kewl.

Brave.

I'm not brave.

Everyone tells me I'm brave.

But you don't see me cry all the effing time at the hospital, in doctors' offices, and in my car.

There are full scale meltdowns and whiny sessions - depending on the situation.

Just sayin'...

Long Overdue Update...

You know what's nice? People always asking for updates. And I'm not being sarcastic (I know it's even harder to tell without the nonverbals).

A lot has happened since my last post -obviously- because it was 4 months ago. Sort of defeats the purpose of a blog, right? When friends and family ask for updates, it does make me feel nice. It's nice to feel cared for. So...thank you! Here's a quick update:

I've had five Lupron shots so far. Every time I go to the oncologist, I get Lupron, Xgeva (for the bones), and a little blood draw. For the record, I still consider myself lucky. In April, I had a PET scan and had a full-scale meltdown. The actual PET scan, of course, was nice. Nothing better than being wrapped with warm blankets and instructed to take a nap! I was bummed because it wasn't my Indian friend this time, but the new woman was nice.

About the meltdown...I could not handle getting the results this time. I panicked repeatedly thinking about it. Every - single - time that I'd gone to the doctor so far, I'd gotten bad news and I really didn't feel like I had the emotional capacity to handle more bad news. I felt so much dread going into that appointment and had this weird internal debate about whether I should go, whether I should get the results....maybe the doctor can just tell my husband the results and he can decide if wants to tell me...etc.

I cried waiting for the results...and when the doctor gave us the good news, I cried again. Drama.

It felt so amazing to finally get a positive results. For the record, I consider no progression good results and we should all hop on this magical unicorn ride! So here's what's up:

- The spot on my humerus barely lit up on the scan
- The spot on my spine got smaller
- My lymph nodes stayed the same
- The out of control breast tumor decreased slightly

It was so effing exciting!

In the meantime, I've been experiencing the intense joys of menopause. It's actually a good feeling though, because in my opinion: serious menopause means that the hormones are leaving mah bod. My hot flashes are intense, but not so bad when you work in a building where the climate is set to emulate an igloo. Someone asked me if I was having mood swings - so I looked pointedly at my husband, who said nothing. At the time... I thought we were agreeing that I was as pleasant as always. Upon further reflection...this is probably not correct. At times I am easily irritated and argumentative. I don't think I was this way before...and your opinion doesn't count. Just kidding! But I have been kind of crotchety about little things - if you've been in the line of fire of Kaye's 'tude, I apologize. I'm [probably] not doing it on purpose.

Blame it on the men-o-o-o-o-o-o-opause (like the Jamie Foxx song - please see below, but replace chorus with my clever updated lyrics).

Menopause - HERE I COME!

I am making a big, huge deal about this whole menopause thing. I got my first shot of Lupron today. Again, the side effects will be mild compared to harsher treatments like chemotherapy. It just feels weird. When I take a step back and just focus on the fact that Lupron will decrease my hormone levels and hopefully shrink tumors - I am totally cool. If I think about how it shuts off my ovaries and basically takes me through a pseudo-menopause - I'm totally not cool.

Full disclosure: it did not hurt that much. The needle was the biggest needle I've had stuck in me: Boo. But still, I have to touch the injection site to feel anything. Which is good.

Here is what I have to look forward to (according to the Google): a surge of hormones in the first few weeks, then a steady decrease (hopefully); hot flashes; mood swings; and that's it. There are other side effects, I'm going to focus on not experiencing those (thinning hair, weight changes).

I'm afraid that I'll be a different person without my hormones. I mean, I've had hormones for forever...and obviously don't know an adult life without them.

If I'm snippy in the next few weeks or months, this is why.

I want to share this article before I end this post: Soy Supplements and Breast Cancer
There's a lot of info around about soy and breast cancer - and I truly do not want to be an alarmist. But...this study shows that soy protein isolate makes breast cancer more aggressive and harder to treat. This basically means no soy protein. It also means yes edamame and tofu!

I'm Going to Need More Fingers

I think it's time for me to stop and count my blessings. The people in my life are awesome...and they love me. This is -hands down- the greatest way for a people person (like me) to be blessed. Friends, family, and acquaintances will send me things, bring me things, make me things, and write me things - all things that take away the sting of losing so much to something so insane.

A good (and hilarious) friend of mine started a heart chain for me on Facebook. She got a crapload of people to post pictures of hearts for me. They were cute, funny, creative-as-hell, and each one made me happy-cry in ways that also made me grateful to be at home where people couldn't see my happy-cry face.

Another friend is a doctor at City of Hope. When I found out about my humerus last week, she asked if I was going to COH for a second opinion. I told her I was...but...I couldn't get an appointment until February 24. Not even 24 hours later, I get a Facebook message from her telling me that she snagged me an appointment on Monday. So...here's the thing: I hate missing work. Not only did she get me an appointment super quick, she also made it on a day I already have off. Seriously, nothing could be better.

This story is going to be kind of cheesy-hopeful, but bear with me. I thought I was going to be starting chemo, so in my mind, I did all the preparations. I thought about how I should cut my hair short, buy all new skincare products, rearrange my work calendar, etc. all around my having to get chemo soon. Luckily, I was able to go to COH first, where the oncologist told me a whole mess of stuff that was awesome and terrible all at once.

I learned so much in this consultation on Monday and after today's consultation at UC Irvine, C and I are so ready to move onward and upward. It's hard to write this blog sometimes, because I want to share everything and document everything in decent detail. Unfortunately...things happen SO quickly. Decisions are made, information is given, and plans change. So in quick-ish outline form, here is what happened:

To recap: My PET scan showed a new cancerous spot on my humerus (where my right shoulder is). Other tumors measured larger. I started tamoxifen on October 28, 2013. My oncologist in OC says we should start chemo soon.

At City of Hope: I get scolded for declining Lupron shots. Lupron is the shot that will shut my ovaries down completely and have me go through menopause in a manner of months. The COH oncologist tells me that it would have been for sure better to have started Lupron months ago. We did not know that. I cried and immediately felt embarrassed (for crying). We learn about flares.

Flares are something that can happen on the road to hormone therapy working.

Many patients in my situation will experience a flare in the beginning stages of hormone therapy.

Flares will cause tumor growth and pain.

Flares often indicate that hormone therapy is working.

At UC Irvine: The newest doctor I've met with lets us know that he recommends we continue with hormone therapy (we told him nothing about what COH said). He wants us to consider using a different drug (to replace tamoxifen).

So C and I now have to decide if I want to give tamoxifen a chance for 2 more months (COH) or switch to Femara (UCI). I'm leaning towards tamoxifen.

How blessed am I to have had a thoughtful friend intervene and get me a faster appointment at City of Hope before I cut my hair or did something crazy!?!?!?

Very.

This is a Marathon...and There are Hurdles

When something bad is happening, I brace myself and try to get as much info as possible right off the bat. If I feel like someone is upset with me, I need to know how, why, when, what, and how bad is it??? It's alarmingly necessary for me to know what the worst-case scenario is immediately.


Then comes cancer. Ugh. What can I say? The worst-case scenario is really bad and out of my control. I had a PET scan on February 5th and the results weren't great. The PET scan itself? Awesome. I requested the same tech - he was fabulous and did not disappoint. The actual results were less fabulous.
I had the scan on a Wednesday and made an appointment for results on Friday. I had this work thing that I did not want to miss right after the appointment and decided to move it to Monday. A wise friend asked me: Are you sure you want to wait the whole weekend?
I got to the oncologist and was by myself for the first half of the appointment, in which I learned that:
I was crushed. I was really hoping for something better (who wouldn't), but the spread to another bone really bothered me. Based on these results, my doc wanted to abandon hormone treatment and move on to chemo.
Things shifted into overdrive. I started calling City of Hope and UC Irvine docs to get second/third opinions immediately.
Some days, it feels like the more info I have, the worse it is. There just isn't a whole lot of good news. Yet...I still ask for the info. I can't stop. But there are lows - and there are highs, and I have a feeling that things are looking up.



No joke, I was like: Um...of course! 

Man did I misjudge my crazy mind. 

Thursday morning, I ended up calling the doctor to see if they could squeeze me back in on Friday. They could not. So here I am, consoling myself, when the nurse asks if I can come in the afternoon? On Thursday! Seriously, I just had the PET scan the previous morning. Bless my boss' heart she was totally cool with me taking the appointment and going to get the results. Which were not good.

A) The tumors grew
B) I have a new tumor in my humerus

Is it Time?

The month of January was...interesting for me. October to December was consumed with being sad and then the holidays happened, which are surprisingly not an effective way to cheer someone up. I thought it would be different. But I felt numb to the cheer periodically and really appreciated the time off to just decompress and spend some incredibly low-key/do nothing/laze on the couch time with my husband.

Once I found out the tamoxifen wasn’t working (Dec 26), I think things began to change. I’m starting to feel like maybe it is time to take charge and do something about something. Who knows what though? There are so many aspects of “fighting” cancer – it’s all overwhelming. How exactly should I “fight”?

For many years, I’ve been passive-aggressively attempting to get really healthy. I kind of made it (sometime around 2012) with lots of cardio, Pilates, and a really good diet. When I started working full-time, that kind of fell by the wayside. 

In January I decided that I needed some sort of intervention, and short of calling it a New Year's Resolution, I made changes. I started with a promise to myself for the month of January: I would drink one green smoothie and eat one salad each day. I don't think I noticed the benefits in one fell swoop, but I did - and continue to - feel amazing. Eating that much produce made a marked difference in how I feel. I did break my promise for three days, when I did a juice cleanse. Other than that, though, I stuck to it pretty well.

As for the juice cleanse, it was amaaaaaaazing. I loved it - and can't wait to do it again. I'm a compulsive overeater so it was a really good experience to feel not full for three days. The second and third day and the day immediately following were fabulous for me. I had so much energy and generally felt awesome! I would definitely want to do this periodically. 

For the month of February, I'm promising myself to go to the gym more. I've been slacking off and it's so easy to make excuses, even if it's just to go home and do absolutely nothing. So that's happening...so far, I do feel pretty good, and I think it's because I have month of healthy eating to back it up. :)

I'm home from the gym tonight - no workout, no caffeine, and no CARBS in preparation for a PET scan tomorrow. Full disclosure: I am so scared. I am hoping so hard for this to yield positive results. Just physically though, the tumors that I can feel do not seem to be shrinking, so my optimism is measured.

Regardless of what happens, I will be trying to make positive progress in other parts of my life every month. New month, new promise. 

Mixed Signals

The tumors are responding to treatment, but they are sending us mixed responses. It’s pretty irritating.

I had an ultrasound+mammogram the day after Christmas – first thing it the morning! It seemed like a good idea when I scheduled. Did not seem as genius when I was dragging myself out of bed that Thursday. I had some mammograms done first, uncomfortable as always. I was relieved to find that the same ultrasound tech that had done my ultrasounds in the past would be working with me again. She is the perfect mix of no-nonsense but personable. Emphasis on the no-nonsense. I enjoy that in medical professionals, I’m finding.

I hadn’t seen her since I had my breast biopsy in September. I remember her doing my first ultrasound - after I’d found the lump. She smoothed the gel onto my skin with the ultrasound probe and asked me more than once, “How long ago did you notice this?” Looking back, I’ve learned that techs and radiologists can often tell by the way a lump looks via ultrasound, what it is. But staid as she was, I never felt any alarm. I told her: (1) a few months and (2) it doesn’t seem to have grown.

One of my favorite things about her (creepy, since I’ve only seen her three times in my ENTIRE life) is that she takes all my little symptoms seriously. The first time I saw her, I complained about my arm feeling tight when I raised it. Immediately, she ran her ultrasound over it to see if anything was amiss. Same thing this time! I showed her a little tiny bump on my skin that I was obsessing over and she just ran the probe over my skin to see what it was. 

At the end of my mammogram+ultrasound on 12.26, she left me in the ultrasound room and took the pictures to the radiologists to read. When she came she told me that the largest tumor in my left breast had grown since my mammo+ultrasound in September. Some of the other tumors (like one in my lymph node) had shrunk. Well...that's just fabulous. What does that even mean?

I met with my oncologist the following Monday and went over the results. He said that with this response, he recommends that I start Lupron - the injection that will shut my ovaries off - so that I'll further eliminate hormones in my body. Thinking about doing that makes me want to cry. I just don't want to deal with all those pre-menopausal symptoms right now. Especially not acne. I am very vain.

This was our compromise. C and I always said that I'd wait until the first PET scan (after 4 months) to make any changes in treatment. I'll be having a PET scan soon and I guess that will be even more accurate. We'll see what we see then, and adjust treatment accordingly.

In much better news...I was offered a permanent position at work - which I accepted (of course)! I am thrilled!

I've been subbing since February, which was emotionally and financially difficult. Not extremely difficult by any means, but still hard. We are grateful for stability at this time in as many areas of our life as possible. I'm also grateful to be starting a position doing what I love. 

Here's to not living like I'm dying - and just living a good life. 

Prognosis Factors

There's one questions that I can not bring myself to ask any doctor that we've met with so far.

I can't muster the courage to ask how long I have to live. 

First, I would feel like I was being super dramatic if I did. Other reasons include: 1) it is so cliché, 2) I don't feel it's fair that I have to contemplate this, 3) the information would likely haunt and overwhelm me, and so....4) I don't want to know.

Thinking about it too much is what leads to a lot of the conflict I feel about my future and my long-term plans. Everyone will die...eventually, but my eventually seems like it might be sooner than originally anticipated. When I was first diagnosed and sharing the news with those around me, one of the things that reassured me most was that no doctor told me I had "x" number of years to live. In light of such devastating news, this was a real relief.

I don't believe that any doctor can be extremely certain when they attempt to predict survival - and everyone has heard stories where doctors predicted incorrectly. Instead, my oncologist went through a set of prognosis factors* with us to give us an idea of what's working for me...and what's working against me in this sitch:

1. Size: My original breast tumor was approximately 4.5cm in length. That's pretty big. It's the tumor that prompted me to schedule an appointment to see a doctor. This tumor and it's location in my left breast make me a candidate for a mastectomy rather than a lumpectomy. If tamoxifen shrinks my tumors down a little, it will make surgery easier. When breast surgeons remove a breast tumor, they have to remove a clean margin around the tumor to make sure they get it all...so my 4.5cm tumor and a clean margin would be a large chunk of boob. Verdict: Size, not working in my favor.

2. Lymph Node Status: Breast cancer will often spread to the surrounding lymph nodes first. Cancer can spread once it's gone to the lymph nodes, and pathology reports will include results from the biopsy to see if there is lymphovascular invasion, which means that cancer cells are found in the lymphovascular system. I have multiple (numerous) affected lymph nodes. I tested negative for lymphovascular invasion, but false negatives for this are very common. Verdict: Lymph nodes, not working in my favor. 

3. Grade: Grade is different from stage, but is also categorized with numbers, so it can be confusing. There are three grades, and cancer grade does not factor into staging. Grade is an indication of the aggressiveness of the cancer. The pathologists will look at samples from the tumor(s) and see how similar they look. The more similar they look, the better, this means that they are not multiplying, growing, evolving very quickly. Most patients my age have very aggressive, fast-growing cancer. My tumors, however, have been categorized as grade I. Samples from all three sites (breast, lymph nodes, and spine) look the same. So....that's weird. Verdict: Grade, totally working in my favor. Yay!  

4. Hormone Receptor Status: Tumors are made up of all sorts of things. For real, Google it. When doctors test a tumor, they check for proteins that are hormone receptors. A hormone receptor is a protein that feeds on estrogen or progesterone. Tumors are categorized as hormone receptor positive or hormone receptor negative depending on the presence of these proteins.  My tumors are very hormone receptor positive, the tumor in my breast is 99% positive for estrogen receptors and 90% positive for progesterone receptors. This is a good thing because it gives us endocrine therapy as an option. Verdict: Hormone Receptor Status, working in my favor.

5. HER2: If a tumor is HER2 positive, it contains proteins known as human epidermal growth factor receptor 2 (HER2). HER2 positive breast cancer is typically more aggressive, but with it comes other drugs and treatments that may work (like Herceptin). What's really tough is when someone tests negative for HER2 and hormone receptors, that can really limit treatment options. Verdict: HER2 status, working in my favor - go me!

6. Metastases: Metastatic cancer is when cancer spreads beyond it's original location. It's different than having two different types of cancer (ex: breast cancer and lung cancer at the same time) and doctors check the pathology of the tumors to learn if they originated from the original cancer, or if they are distinct. Metastatic cancer is bad, as I'm sure you've heard. I am grappling with why...but basically (from what I understand), once it's in your system just moving about, it's there...so...that sucks. As I mentioned before, metastases means Stage IV cancer, which is not considered curable, which is why I can't get aggressive treatment, put this all behind me, and have some babies (Bitter? Yes, thank you for noticing). Here's the good thing though, metastatic cancer to the bone is not as bad as metastatic cancer to a visceral (vital) organ. So...yay? Verdict: Metastases, NOT working in my favor. Bone metastases, working in my favor...considering...

This is a long boring post, I know this, but I think it answers a lot of questions that people have. After going through this with my oncologist, the primary factor that I choose to focus on is the grade. I am so grateful every-single-day that I have a slow growing cancer. It's like my little security blanket and I will take it with me everywhere as long as I can. Considering that my cancer has already spread, knowing that it can't really go anywhere fast is very comforting.

*These are just a handful of prognostic factors that my oncologist decided to go through with me. This article lists more prognosis factors. Relevant prognosis factors are uncovered throughout the diagnosis and treatment process. Please note, that this is the first article I found, it is from 2007, and some things may have changed.