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.