Team #SpicyStrong

In this post...

  • Team #SpicyStrong

  • SuperBowl ShaveDay

  • Thanks, Gaga

  • IronWoman time  

Team #SpicyStrong.

I'm in awe of people. In short, I've been learning just how wonderful they are, and it's not just family and close friends. I've heard from people I haven't exchanged words with since high school, as well as strangers who felt compelled to reach out. 

Then I learned that my cousins, Emily and Julia, have been spearheading  (+ Emily's husband, Carl, coming up with the "Team Steph #SpicyStrong") a t-shirt and wristband drive in my name.

 Amazing. To see my family and friends wearing that and showing this kind of support means the world to me. It also shows just how bighearted my friends and classmates from Fremont are! I haven't seen some since the early 2000s and they also got in on the #spicystrong! The words sound so hackneyed but I don't really know how else to express my gratitude. For everyone involved, just know I will always remember this. Thank you for your love. 

And a special thanks to Emily's friend, Alie Hatzenbuhler, for her help in all of this! Apparently her company Corporate Couture helped to organize and donate some orders. The generosity is also overwhelming :].

SuperBowl ShaveDay.

While all of you mourn the outcome of Superbowl LI (at least I am haha), you actually missed the biggest event of the day... 

The time had finally come to chop it all off. My fingers would run cautiously through my hair and by the time my fingertips met only air, there'd be a thick clump of hair resting casually in my loose fist. I still remember staring at the hair the first time it happened. It felt like each strand had made some rebellious move to escape my head. A betrayal. 

Then I realized, I'm sure my guys tried to hang in there as long as they could. I have to keep reminding myself that this is a good thing. It's a sign the chemo is working. Right?

Honestly... it was a rough Sunday. I've heard what quite a few people have offered up as solace:

-It's temporary!
-This means the treatment is effective!
-You'll look great!
-Hey, this is a look you'd never have tried! (My favorite.)

It  may all be true but for a "girly girl" like me, the thought of losing all of the hair and having to wait a long time for it to grow back to pre-cancer lengths really ate me up. Still does. Tim told me something about how many people who practice Hinduism in India are expected to shave their heads as a lesson of letting go of ego and vanity. I looked it up on the National Institutes of Health website.

Tonsuring is the act or process of cutting the hair, especially as a religious rite or custom.

I guess I can get behind that. Another friend of a friend had said that I would not "give a f*ck about anything" after going through this (cancer - not just the losing hair part). Perhaps this will catalyze my reprioritization of what I should pay any attention to, what I should erase from my list of cares and concerns. 

I'll be honest: I would start to bawl at random times all weekend long. It felt like a necessity: get it all out, embrace the pain, grieve the loss.

For anyone else going through this, here's one really important thing that I learned: it's tough for those around you, who love you so, so much, to truly understand elements of your cancer journey like hair loss. They mean well. They want to say the right things to make you feel better, but it usually misses the main mark. Tim has done a wonderful job of reassuring me (constantly...because I constantly brought it up lol) just how beautiful he thinks I am, hair or no hair, and I really appreciate that. But hearing that isn't the same as talking to other people who've been in your shoes and have had to confront the tsunami of emotions that can emotionally wipe you dry.

I joined a Facebook forum where some other women told me things that did make me feel better. Here are some of them in hopes they may resonate with you, too.

I feel like the anticipation was way worse than actually shaving it, for me my head was so sore while my hair was starting to fall out it felt better shaved. And at least it's still winter so wearing a cute beanie is comfortable. Hope this transition is easier than you think! 
Excuse my language but it FUCKING SUCKS! I didn't think I'd be so emotional about my hair but I was. Trust me it'll get better eventually. But for right now you every right to bawl your eyes out. ((Hugs))
No shame in being sad about your hair! It really sucks and it can feel like a constant reminder that [you're] sick (which I struggled with in the beginning) but honestly like anything in this fun ride we have no control over you adjust! 

There's something to be said about feeling like you've been given permission to just be real with yourself. It's freeing and I think only after you fully commit to that can you truly move on.

Thanks, Gaga.

Watching the game halftime show, there was something I heard in Lady Gaga's performance that stuck with me: 

The lyrics to "Born This Way" have never struck me the way they did tonight. They gave me that extra kick I needed before I decided to go through with "Battle Head." It sounds silly, but sometimes it takes just that extra bit of something else that pushes you past sitting on the fence.

So at 9pm Sunday... I told Tim and my parents that I was ready to shave my head. Oddly enough, when Tim started cutting my hair with scissors, I felt nothing but chills and that was only because of the foreign sensation I felt from the clippers. I didn't cry. Maybe it helped that my parents were actively trying to distract me...

MOM: Oh, wow! You look so cute! Doesn't she look so cute?
DAD: Yes! Definitely!
MOM: You look like a cute little boy! 
ME: Thanks, Mom.

Hahaha. I love them. So much. ❤️ And Tim did such a great job shaving my head, gotta give the boy props. 🙌 #steadystronghands #steadystrong everything!

Now that I have basically no hair, I  can report that there are some major upsides:

  • Light, airy feeling
  • Super easy to wash in the shower
  • Super easy to dry after the shower <--- my fave by far because it's SO wonderful not having to take a ton of time drying long hair with a towel before blow drying. Woohoo!
  • No need to take care of it or worry that it looks messy. TBH I never did much with my long hair, it was always very cooperative; however, it's even MORE cooperative now that it's basically not there haha so maintenance = 0. Yas.

IronWoman time.

(Because the port is inside my chest. Time to superhero this cancer out of me!)

Third time's the charm. Thanks to getting the Neupogen shots Wednesday-Friday, my white blood cell counts, specifically the neutrophils, shot up. This gave me the green light to get my port placed Monday - woohoo! No more delays, no more Plans B + C + Everything-Other-Than-A.

It also meant a short break in having to inject myself twice a day with the blood thinner. I'll take these small victories.

The port looks is a small little spherical device that they put just under my skin on the right side of my chest. It's connected to a fairly long cord that winds its way into the superior vena cava which is what was initially "oppressed" by one of my main tumors. I had suffered SVC Syndrome which is what presented as the original swollen face, jaw and neck that moved me to go to the doctor's in the first place. The SVC is a large vein that moves blood into the heart from the upper body, head and arms. This should allow the chemo drugs to really move effectively into my bloodstream and kill the cancer.

The only difference between the port I got and the one pictured below is that mine is bigger because it's a double which allows the doctors and nurses to not only use it for chemo, but to draw blood, etc. They will have to poke through the skin each time but I hear it's much better and convenient compared to poking me with a needle in the arm or putting in an IV.

 THE BANDAGE ON THE NECK WAS A SECOND INCISION SO THEY COULD PUT IN THE WIRE AND THEN CONNECT IT WITH THE ACTUAL PORT.

THE BANDAGE ON THE NECK WAS A SECOND INCISION SO THEY COULD PUT IN THE WIRE AND THEN CONNECT IT WITH THE ACTUAL PORT.

All it is now is a sore, itchy pain but I am so excited to finally have it in. Now I look forward to Wednesday, Day 1 of Round 2 of Chemo. Since I have my port in, we can go with the original plan of using dose-adjusted R-EPOCH, the most aggressive chemo regimen for lymphoma. I get to do this outpatient since I live fairly close to the hospital so this means I go to the hospital every day to get my drug pack changed but for the most part, can undergo the chemo at home. 

I'm nervous because I've never had R-EPOCH so I don't know what the side effects will be like this time around, but so looking forward to killing off the rest of this evil cancer that lies in 2 big masses and 1 small one inside me. 

Sayonara, cancer, you stand no chance. 

Big hugs,
#spicygirl

 

 

Stephanie ChuangComment