The last stand - I mean strand.

In this blog post...

  • What is this? Good news?

  • The last stand - I mean strand.

  • Power of perspective

  • Let's talk about... anything other than.

  • Dr. SnapChat!

What is this? Good news?

Man oh man. I've been waiting for this for a long time. Good news. First, a quick backtrack to set the scene: 

  • Went through hell several times over the last few weeks and last few days in particular.
  • Was supposed to get my port placed this past Monday, then learned I had to undergo more tests because the radiologist was nervous that one of my main tumors might present problems.
  • If I couldn't get my port placed, I'd likely have to get another PICC line put in and would not be able to undergo the more aggressive chemo regimen yet again... which made me super nervous about the efficacy of this treatment. Best chances of "curing" the cancer = during the first go-around.  If chemo fails to kill off the cancer the first time, your chances in the refractory stage are a lot smaller. Boo.
  • I was also really nervous about the effects of  undergoing yet another CT scan with the radiation. Frustrating that so much of the good occurs only through necessary evils. 

But yesterday, spending time with my parents and Tim, helped to reverse my negativity. I had already committed to being positive, to fighting for them...but when you add in actual smiles + laughs... there's a contagious, visceral shift. That's love for ya :].

And then I got the call from my doctor. She started it with a cheery voice so I was actually expecting not-so-good news (automatic defense mechanism against disappointment). Turns out that the scan showed the tumor in my chest shrank by half after the less aggressive cycle of chemo! It's hard to really know what this means because the standard doctors use is the results of the scan after the fourth and sixth chemo rounds. 

Let me repeat that: the tumor shrank by half after one round of the less aggressive chemo regimen.

So it's hard to "read" the results officially but still... this is so encouraging. It's the first real GOOD NEWS about my cancer. It feels like I can hold onto something now and build on it instead of feeling like a pin-cushion-punching-bag. I even did a little dance after brushing my teeth in the bathroom. Think: fist-pumping while shuffling.  Don't worry, there's no visual documentation of said "dance." (You're welcome.)

And on top of that, it means I will likely* be able to get my port finally placed! The procedure has been scheduled for Monday. 

* = dependent on whether my "labs" (blood drawn) come back good enough Monday morning. When you undergo chemo, your blood cell counts are massively attacked. This is called "neutropenia." Here's the Mayo Clinic definition:

Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria.

This makes me much more susceptible to infection (which is why I have to wear a mask if I go out). My neutrophils have been really, really low so I've actually had to get bone-achy shots (my third one is Friday) to help boost the levels. This is the only thing I can really complain about: it makes my bones ache and I feel more tired, but I will take this over the last few weeks any day of the week. I feel so grateful to only be experiencing these symptoms. 

The only thing that hurts, both physically and emotionally, is my hair loss. My scalp hurts. When I cough, my head hurts like crazy.

The last stand - I mean strand.

Everywhere I walk, there goes a trail of hair. I think what actually helps is that I used to shed my long hair naturally quite a bit, so there's less of the shock when I have to clean up all the hair from the floor and from my clothes. Occasionally, I stand in front of the mirror and pull my hair back to try my best and see what I might look like without any hair. I try to focus on the area that I had shaved in January because it's obviously it's the shortest and most comparable to what I'll look like "bald." Ugh. Hurts me to even type those four letters. I guess those quotes are there as protection against it as my reality. 

So I've also made a decision that I'll share here in case any one wonders about the lack of shaved-head pictures: I'm not posting any. It's not because I'm ashamed. Day by day, I've tried to mentally prepare myself for the inevitable. I try to envision what I'll look like and get as accustomed to it as possible before actually shaving. I acknowledge I'll never truly be ready for the move, but I do feel myself getting just a bit more comfortable with the idea. 

That doesn't mean I want the world to see me this way. I feel like this has been emotionally grueling because the look of the bald head is the quintessential cancer symbol, at least to me. Since I know I'll beat this thing (GTFO here cancer!), I don't want to put that image out into the world.

This is a very personal decision. I understand that many other cancer patients and survivors have published those images of themselves. I think it's brave and I think it must make them feel like they're owning the situation, similar to how I've decided to own mine by sharing intimate details about my journey. There's no right way to go about this and yes, I've considered posting the pictures of me without my hair. At the end of the day, my choice was a quick one. A confident one. This is what feels right for me because personally, I feel like I'm making an effort not to let cancer define me. 

It's taken over every aspect of my life, but I am deeming it a temporary phase. This will not be my life. 

Power of perspective.

This is where attitude is uber critical. I have forced myself to smile. I actually feel myself relaxing after that, even though it started as a forced move. 

I read on a Lymphoma forum what one cancer survivor wrote about her hair loss. She said that she told her kids that it just meant the treatment was really working. When I read that, I immediately loved it. Yes. And hey the CT scan proved it - the chemo really is working, at least right now. 

When I think of things in this way, it makes the hair loss less scary. Instead of the falling strands symbolizing some ghost bully sucking life out of me, I feel like my shaved head will be my "Battle Head." Yes, I named it. It means I'm fighting for my life. The more hair that falls out, the more effective the chemo. I don't care that that's not scientifically proven, I care that I believe this and believe in the treatment. 

One thing I will say is that no one can ever understand the pain that comes with being forced to shave your head unless s/he has had to do it. This is one of those areas where I don't feel like I can talk to my family or friends, I have to message the other young women who've been in my shoes. They get it. They know how painful it is. They don't tell me automatically that it'll be okay or that I'll look rad. They say it sucks, it's the most hurtful part of the process, to accept it and grieve the loss. 

Which brings me to my next point. I have to be brutally honest here. One of the most tiring things I go through isn't even the cancer itself - it's talking about it.

Let's talk about... anything other than.

To be extremely clear... that ends with "cancer." I know I have it. I know it's a shock to a lot of the people in my life,  most of whom I have not yet seen in person because I just haven't felt good enough.

I want to hear about your life. What's going on with you? I don't mind sharing some of what I go through day to day, but to be honest... I'd rather just direct people to my blog for the cancer stuff. I think part of me also worries that if this is all people decide to talk to me about, it will become my life. I've heard from survivors that is is very important  to  continue to live life through the chemo rounds and ensure that cancer does not become the entire definition of life. Clearly, it's going to take up most of my energy. The chemo goes in three-week cycles: 

WEEK ONE: 5-6 days of straight chemo pumping into my veins, into my body. I may be sick during these days, feeling some side effects.
WEEK TWO: The most notoriously painful time in the three weeks. Doctors and people who've undergone the chemo regimen have said that this is the time I'll be most neutropenic and when I'll suffer the most symptoms. 
WEEK THREE: When I'm supposed to be "back to normal."

It appears that the chemo will take up most of my time - but perhaps for that third week, I can focus on continuing work on The Refract with stories I had originally intended to pursue before cancer. We'll see what my energy levels are like; however, I know that I will work my hardest to live life to the fullest. If I plan my life these next few months defined only around the cancer, I think I will go nuts. 

Dr. SnapChat!

You know what makes days better? Nice doctors and nurses. Thankfully, UCSF seems stocked with those. (Oh, and the Parnassus campus has great views while you're waiting to get pricked and prodded 😜.)

One doc I met was an older gentleman by the name of Dr. Schiller in the Cardiology department. He had been tasked with making sure that my heart was in okay shape to continue the IVF, so this was maybe three weeks ago or so. 

Have you ever met someone and thought... you could have your own TV show? That's kind of how I felt about Dr. Schiller because he has such a distinct character. He moves slow because of his age but you can tell he's very sharp and very kind (such a great combo for a doc!). Now this is some weeks ago so I forget the exact conversation but for some reason, I introduced him to SnapChat haha. Here's the product.

No, Doc, pleasure was all mine! Doesn't he look super cute as a deer? ;)

I think about the work these medical professionals have to do and I respect it so much. It goes beyond the altruism and heroism of saving lives. There's this intangible you also have to have, maybe something along the lines of having real guts. You are in a field rife with disappointment, death, loss... so you'd better be equipped with enough optimism/positivity to deal with it. The heaviness around something like cancer day in and day out boggles my mind. 

So from the bottom of my heart, to all those who've dedicated themselves to this, I thank you. 

All right, peeps... here's hoping the next update is even better! :D Chemo Round 2 starts next Wednesday. It's more aggressive so I hope it kills off even more of the cancer. I mean.. IT WILL KILL OFF THE CANCER. 💪 BOOM.

Big hugs,

Stephanie Chuang4 Comments