In January 2015, I was diagnosed with Stage III Hodgkin's Lymphoma. This is a blog about my battle. I'm going to turn into a blog about me kicking ass and winning.
I finally did it! I asked my mom to buzz off the rest of my hair today! My mom was nervous and took her job really seriously. And since we were both noobs at this, it took about an hour and 4 iterations of cutting/buzzing. She started with scissors to get most of the length out of the way (we were worried the clippers would tug at my hair), buzzed with 2 different attachments, then finally just did it without any guards to get it super short. Like I said, noobs! We realized we could have went straight to the last step halfway through the last step. So I'm not completely bald, but now I don't have to deal with hair falling out as much.
My head feels so light and I can feel the breeze against my scalp which is so new and strange! And now I know for sure that my head is pretty round and symmetric. And small, according to my mom and Damien. Those were their first comments about my new haircut hah.
At the end of that video, she says my head is really small. Here's a time lapse one of the process. The yellow towel unintentionally makes me look like a monk haha
I like it! I won't have to deal with hair during the hot Texas summer, so yay!
Man, this last chemo hit me worse than the other ones. I was wiped out Friday afternoon through Tuesday. I slept all weekend and only woke to eat and watch Divergent (I thought the movie was better than the book and I kinda want to watch Insurgent now). I felt so fatigued and unmotivated, which then makes me feel bad about everything because I'm usually content doing just about anything. I had some periods of restless arm syndrome where my arms from my elbow to my shoulder had this sensation that's hard to describe. I just had to move them because that feeling was driving me nuts. You can just imagine me flapping my arms on the couch because that's literally what I did hah. The feeling would go away after like 20 minutes, THANK GOODNESS. I'm finally feeling normal again today (5 days post-treatment). My parents came down Monday and my mom, of course, tries to feed me every hour. But I'm not complaining because I've gotten some awesome home cooked meals out of this, score! Also, my mom loves to clean and my dad loves to fix things, so I'm winning all around. They're also my new walking buddies during the day. The weather's been wonderful lately in Austin, so I've been taking walks after breakfast the last 2 days.
Oh, some goodish news - the results from the pulmonary function test that I took after chemo #2 shows no decline in my lung function (one of the side effects of bleomycin).
Some not-so-goodish news - the rate at which my hair is falling out has increased. Time to bite the bullet and buzz it off!
Happy belated St. Patrick's day! I did absolutely nothing for it.. Unless you count going out to sushi with my brother a celebration.
Kevin came down Sunday through Tuesday and spent the first part of his spring break with me. We both worked from home and watched many hours of House of Cards and Brooklyn Nine Nine. It was great spending time with him, chilling, and chatting. He did leave the my sphere of boringness and went downtown to SXSW for a night and had fun.
Yesterday, I went into work to clean up and pack my desk. No freaking out! I wasn't fired and I didn't quit! We are moving offices to a bigger better place. I went in because my desk is embarrassingly dirty and dusty. I've missed being at work and around my coworkers. They're wonderful caring people. I do talk to them when I work from home, but that's not a substitute for hallway chats and face time. Many of my coworkers also chipped in and got Damien and me wedding gifts too!! Totally unexpected and so so touching. We received a Roomba (how have we lived without it?), an RC quadcopter with camera, a gift card to Travaasa Resort & Spa and a generous amount of cash. I'm totally touched by all the other wedding gifts I've received from friends too - crystal toasting glasses, cute oil candles, ring holder, gift cards to amazon (the only place I shop nowadays), a gift card to Uchi (my favorite!) and the standard Chinese wedding gift - cash. I didn't really tell many people in person or personally that we were getting married because we didn't want the attention. The blog entry was really the only place at first. Also, telling people that you have cancer followed by telling them you got married makes for some very awkward reactions in person haha. People have extremely conflicted feelings to these pieces of news obviously. I just want people to be happy! But it turned out to be joyous! I'm really really empathetic (it's actually my top strength, says the book Now, DiscoverYourStrengths. You NetQoSers should know all about that) so it really makes me happy to see people happy for us.
Oh, so back to my visit to work. It's been 2 months since I saw everyone. I've been worried about catching something from a sick coworker. There have been many times I've wanted to go in because working from home, while awesome, makes me start talking to my pets and then I start making little decisions based on their "input". What should I have for lunch today, Tesla? Oh you think this smoked salmon smells interesting? Alrighty then! Our CTO gave me a tour of the new office (it's in another building of the same complex and we walked over). I have a window desk overlooking a field, yay. I thanked him for being so supportive while I was going through this cancer thing. He was so comforting (because who hasn't thought they were going to get fired when a long-term health issue comes up and you can't pay attention to work for days on end?). He told me to look out for #, to focus on getting better, and to not worry about work. My direct manager told me the same thing when this ordeal started and it's nice to hear it in person from our CTO. I packed up my desk. The things I've accumulated for the last almost 3 years at this job include 3 balloons-on-a-stick (Get Well Soon (which was sent for my birthday), Happy Birthday and Seasons Greetings), 2 teddy bears (1 of which cries and snores) and a few vases that hold other random junk. I only spent 3 hours at work but between the packing and walking, I felt wiped out when I got home. It's a tiny bit frustrating to have something so minor make me tired on the last day of the cycle (a good 17 days after my 2nd cycle) but I will learn to accept this as normal...for now.
Today 3/20, I had my 3rd chemo session. My oncologist is taking me off of Oxycontin since my chest pain has been nonexistent for the last month. We're going to lower the dosage for the next month. He warned me about narcotics withdrawal symptoms (anxiety, aches, diarrhea are just a few of them). I'm supposed to deal with the symptoms by taking a short term painkiller until I'm completely off oxy. The chemo infusion itself lasted 2 hours. I didn't nap, but got increasingly sleepy. I could taste the drug more this time as they were going into my system - they taste like hospital cleaner and metal. The metal has lasted all day now and it just make me nauseous. I've been rinsing with biotene and that helps for a few hours. I took a 2 hour map but I'm still fatigued. I'm afraid these chemo recap posts are going to get repetitive soon. :\
So.. Picture time!
I bought a wig from gabalmania.com from South Korea!
Nooo, I'm not drunk haha. In fact, I haven't drank since before New Years Eve. I've been overwhelmed by all the outreach and kind words and prayers and gifts that Damien and I have received over the last 2 months. I'm going to cry just thinking about it. I feel so so so lucky to have so much support and love around me.
This post is an excuse for me to post pictures that my sister and I took over the past weekend :)
So my siblings came down to Austin to see me. Peggy flew in from NYC and Kevin drove down from Dallas. I took this one Sunday afternoon while we were waiting for my mom to make us lunch. We are such kids.
I had a followup appointment and CBC on Monday. My numbers are looking good according to the nurse practitioner. My white blood cell count is actually higher than normal due to the Neulasta shot I got last Tuesday. Here I am at the cancer center. My shirt just happened to match the wrap they put on after they drew my blood.. and that just happened to match the stripes in my hat!
I gathered the hair that fell out in during my shower tonight (to try not to clog the drain). This blob of hair is as big as my hand.
Here is a picture of my port and the surgery scar. The dermabond that the surgeon used to hold the incision shut finally fell off last week. The port has 3 bumps that the oncology nurses feel for to position the Huber needle that they poke into the port.
My hair is falling out in bigger clumps now and I wore a hat for most of the day to .. catch it. Seeing loose hair really grosses me out (apparently, that's just a me thing). I showered, started washing my hair, and had strands upon strands just come out in my hand. It was a bit traumatic (and I'm a bit dramatic). I cried in the shower and then I cried to Damien, my sister and my mom. I don't want to look sick even though I am. Peggy said I'll be fine because I at least don't have a man-face. Aww thanks Peggy :)
And after all that, I still had to tweeze my brows. I'll be REALLY sad when those go.
Hello again! I had my 2nd chemo treatment yesterday and that's the last one for my 1st cycle! Time kinda flies and is slow as balls when you have cancer. This session was half as long as the first one and only took 2 hours. I didn't fall asleep this time but the pre-meds did make me drowsy. I watched last week's episode of Grey's Anatomy and continued to knit myself a hat.
I went in for the Neulasta shot today and it was .. Okay. The shot stings, burns, and feels like it takes 5 minutes to inject. The nurse took it slowly to minimize the burning but it still sucked. I'm supposed to take Claritin and ibuprofen to help with the side effect of bone pain. Bone pain! Sounds terrifying. I haven't really felt it yet so maybe the Claritin is helping.
I was able to go to Costco today with my parents to do some grocery shopping. I took it easy and rode around in a disabled cart with a giant basket in the front. I also rode around with a face mask on. People got out of my way very quickly. Those things have a surprisingly tight turning radius. And those things could really do with a horn of some fashion because people walk soooo slow!
My hair is starting to fall out in larger quantities than my normal shedding. Normal shedding is like 1-2 strands per hand-run-through. Now it's more like 5-6 strands. And I've got scalp pain that feels like I'm parting my hair the wrong way all the time. It's not that bad of a pain.. Just annoying.
In happier news, my sister is coming to town this weekend and my brother might drive down! And my parents are already here so it'll be a family reunion, yay!
Over the last few days, I noticed that the bigger of my chest lumps has gotten smaller!
Background: lump #1 started growing to the left of my sternum right below where my clavicle and sternum meet at the end of November 2014. At first, it was pain-free but sometimes tender. It felt rubbery but got more solid over time. In mid-December, I started getting chest pains/aches like I had slept wrong in bed. The lump grew to the point where it fit in the palm of my cupped hand if I put my hand on my chest. The tumor is my chest cavity had grown to my chest wall and was causing the lump. Early January, another smaller lump appeared further up on my clavicle. You could feel that one above and below my clavicle. We'll call this one lump #2. Lump #2 has not changed in terms of size.
Well, late last week, I did the hand-cuppy thing on my chest and noticed that lump #1 doesn't quite fill out my hand as much! And it's seemed to shrink since then. It's been 14 days since my first chemo session and this is sign #2 that it's working!! Sign #1 was the absence of chest pain a mere 1 day after chemo session #1.
