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.
Sunday, 7/19, was the 6 month anniversary of my diagnosis. It feels like so long ago! Since then, I've been living life in 2-week cycles, but that's about to end! My last chemo is this Friday!! 😁🙌👍👐👏👏 my white blood count is low again so I'm getting 3 Neupogen shots again this week (I'm actually going to be late to the appointment because I'm sitting here writing this instead of driving through rush hour to the hospital). Whatever it takes to get me to the finish line.
The future is still uncertain. When is my next PET? What's it going to show? Do I need radiation? When do I get my port taken out? Why is my hair so grey now? (that one is not that mysterious actually) What if the cancer comes back? How do I deal with that back-of-the-mind fear enough to live a normal life? How's my fertility going to be affected? (hey ovaries, how YOU doing?) What short hairstyles am I going to try to rock?
You know, the usual questions about the future.
Monday 7/20 was my 6 month wedding anniversary! There's a certainty in my life and that's Damien. He's been a wonderful caretaker and puts me miles ahead of himself. He actually just kinda yelled at me about making sure I eat and said I "can't use my butt fat to create blood cells" because I have enough fat to live off of for a few days. Joking aside, you don't have to worry about me not eating. I'm not starving myself and I'm +20 lbs since my diagnosis.
Alright, I have procrastinated rush hour driving enough..
So here's what the day of infusion #11 looked like. This is pretty much the every chemo day looks like:
7:30 - Wake up
7:31 - Fight off wave of anticipatory nausea to get out of bed
7:32 - Crouch on ground for a few mins to get over sharp bone pain in my lower back
7:33 - Try to poop so I can prepare for a weekend of constipation (twas a success yesterday)
7:45 - Brush teeth and dry heave into sink because anticipatory nausea is a real bitch
7:50 - Take Kilby up to his litter box (he doesn't have constipation problems.. He has the opposite problem of go-wherever-whenever)
8:00 - Prepare breakfast of everything bagel with cream cheese and smoked salmon. Eat breakfast. Take a Prilosec to help with digestion and acid problems after chemo.
8:25 - Get dressed (which is just changing from PJs into practically-PJs of yoga pants and t-shirt)
8:30 - Pack my chemo bag with my tablet, headphones, extra charger, snacks, nausea meds and Doctor Who blanket
8:40 - Apply numbing cream to my port in preparation for access
8:45 - Leave house and drive to cancer center
9:17 - Arrive at cancer center, check in, head on back, and say hi to all the nurses and tech and phlebotomist.
9:30 - My chemo nurse access my port to draw blood for the CBC. She has trouble because my blood isn't coming out smoothly (it has air bubbles and is frothing, what??). She pumps the syringe a few times and all is good. I take an ativan to help with nausea.
9:50 - blood counts are good and the nurse starts me on my pre-meds
9:50 - 12:15 - bags and bags of meds are infused into me. I spend the time talking to other patients and Damien, snapchatting, instagramming and IMing people.
12:15 - Done! We head to Hoodys for some philly cheesesteaks.
1:00 - I am full and content. The pre-meds are helping with the nausea but they knock me out. I fall asleep in the car immediately and wake up to us arriving home.
1:30 - Change back into PJs and crawl into bed. Sleeeeeeep. Just a warning - everything after this is hazy because I'm groggy for the rest of the day.
5:30ish - Wake up feeling like bloated swollen crap. Yell out for Damien and he comes to try to make me feel better by doing any of the following - AC higher/lower, ceiling fan on/off, blankets on/off, more water, more pills, less sunlight.
6:30ish - Get out of bed and get hungry. Send Damien out to forage for food (sometimes he cooks but my preferences change constantly)
7:15 - Eat dinner and immediately get sleepy again
8:00 - Try to stay awake watching TV
11:00 - 11:30 - Spend too much time trying to stay awake. Take meds for constipation and hope for a better poop day tomorrow. Go to bed.
The last treatment kicked my damn ass. It took me 6 days to start feeling normal again. That means 6 days of bad fatigue, nausea, hot flashes and general crappiness. I couldn't work from home on Monday because my brain just wouldn't work. Not being able to form sentences or think things through is the worst feeling for me. I worked half a day on Tuesday and finally was able to work a full day on Wednesday. Work has been busy and it does a good job of making time fly. I don't know what I'd do all day at home if I didn't work.. Probably play dumb cooking games, watch Netflix and be completely unproductive. Actually, that doesn't sound too bad haha.
My CBC last week showed that my white blood count was way low so I had to get 3 Neupogen shots this week. They're supposed to boost it enough so I can get my infusion on Friday. The shots are causing me major bone pain in my lower back. Let's hope they work!
Can you believe I'll be done with chemo soon?! This month will mark 6 months since my diagnosis. It'll also be 6 months since Damien and I got married :)
I realized last night that I should put a disclaimer on the hair thing. Your hair along with your eyelashes and eyebrows will probably fall out. My hair is still falling out. I just didn't want to get your hopes up.
Dear readers! Sorry for the delayed updates - life has been slowly happening and writing it down is sometimes overwhelming to me.
Since I've talked to you last, I've finished cycle 5 of my ABVD chemo! I had treatment #10 yesterday. Only 1 more cycle (2 more treatments) to go! This month has gone by pretty quickly. My parents and brother came down the weekend of Father's day and we got to celebrate that and my mom's birthday. I hadn't seen my parents in over a month so that was nice. They got back home Sunday night to a busted 2nd floor toilet and a flooded house :( Talk about stressful. I've been trying to handle their insurance claim while they clean and pack up the house. The ceiling above their kitchen caved in from the water and they've got massive damage to several rooms. Our family's been through lots of shitty stuff this year.
I'm still chugging through treatments. I asked my oncologist about the next steps and he said he wouldn't be surprised if I had to go through radiation because of the tumor in my chest. A radiation oncologist would have to look at my case after my next PET scan (scheduled to happen sometime after chemo ends). The future is still uncertain, which is frustrating to say the least.
Some positives: after treatment yesterday, I got a shoulder massage from a massage therapist who sets up shop every couple of weeks there. It was divine. BUT I was also kind of high on Ativan (to help with nausea) so my perception was definitely clouded. I've also been getting massages with the awesome wonderful Kristen at Heart and Sole Massage every other week after treatment. I had scheduled a massage on a whim about a month ago a few days after treatment because I just felt so stressed out and my shoulders were basically glued to my neck. And it was the best thing EVER. I was instantly stress-free and float-y (without being drugs hah), so I've been going back a week after treatment. I hold my stress in my shoulders, neck, and jaw and Kristen just knows how to work it all out. I cannot recommend her enough. KRISTEN. HEART AND SOLE MASSAGE. GO NOW. but don't take all the slots.
Also, how about that SCOTUS decision about gay marriage :D
SO I have run out of things to write about! If you have any questions, ANY at all, leave a comment and I will answer. When I first started this cancer journey, I scoured for blogs about hodgkin's lymphoma and reading others' experiences helped me prepare so I want to do that for others.
Here are some things I would've wanted to know:
1. Not everyone loses all of their hair! Case-in-point: me. I was told to expect hair loss but wasn't told to what extent. I ended up losing massive amounts of hair, but I had a ton to begin with. My hair grows like a motherfucker so you can't really tell I'm a cancer patient. People have said I "look really good". Why thank you! I aim to please your eyeballs.
1a. Your pubes will fall out, but not everyone discusses that in their blog. Mine haven't all fallen out but again YMMV (your mileage may vary).
2. Getting fluids after your treatment will make you feel SO MUCH BETTER. fluids = saline. I get a liter bag 1 day after chemo but it's supposedly better to get it 3 days after (when the pre-meds wear off). I find it helps with the swelling and dehydrated feeling I get right after chemo. Imagine not drinking water for a few days - that's how I feel immediately after chemo. My cuticles are all fucked up, my boogers are ultra-crusty and impair my breathing, my fingers and tongue are swollen and I have tree trunks for legs.
3. Your urine will smell like chemo meds for 2-3 days after treatment. GOD it makes me gag every time.
4. Chemo patients are generally very friendly and they will tell you all about their cancer and treatment if you ask. Not everyone is angry or sad.
5. The steroids you get for pre-meds will make you eat like it's the week before your period or a pubescent boy.
So, let me know what questions you have! In the meantime, here are some pictures.
I'm really happy you guys liked my last post :) joking about cancer is how I deal with it. I can tell that it's off-putting to some people and sometimes, I feel like I should be more sensitive of how my cancer makes other people feel. But that's ridiculous! My mood sets the mood for the conservation about cancer and I hate discussing it like I'm doomed or like it's a forbidden topic.
I have been taking this cancer life really seriously though and it has brought me down. I've been thinking about mortality constantly because some people really close to me have had to deal with a loss. I've gone down the terrible path of "what if" with my own diagnosis and leaving my family and friends behind. And that leads to worrying about my parents and my in laws. I wish I could I keep everyone safe and healthy so nothing happens to them. So naive. I can't deal with that by joking around. It sucks. I'm so eloquent, I know.
Another thing that set off this week of bad thoughts is my interim PET/CT scan. This was the scan after 2 cycles of chemo that makes sure I'm responding to chemo. The official report released to the radiological association's website a month after (so mid May) so I could download and read it. I had glossed over the results of this scan in my post about it because that's how it was presented to me by the oncologist. I just knew I still had the mass but it was smaller and my lymph nodes weren't lighting up as much. Well, reading a medical report which you don't know what to interpret just freaked me out. Why did I do that to myself?! We went to my oncologist and asked him WTF what was going on. He reassured us and said I'm responding like 80% of patients do (which is an Asian F, btw). I've got some numbers to make me feel better though. Like this tidbit:
"The large mass in the left chest is significantly smaller today measuring approximately 10 x 7.7 cm on a similar slice previously measuring 12.4 x 9.5 cm."
Progress, yea!
I also had brown fat uptake in my neck and shoulders because I was cold. So this is why they put you in a sauna (figuratively) before the scan. This uptake shows up as bright spots just like the cancer does.
Anyways, sorry to be a downer in this post. I've got no abnormal things to write about. My CBC yesterday came back as normal as one can be on chemo. I got to see my uncle who is also battling cancer. His chemo regimen was tougher (sometimes with 8 hour treatments and he had to wear a pump around the clock for constant infusion) and he just had surgery to remove the tumor from his stomach. He's been worried about me and said he was relieved to see me taking chemo so well. He's the one who just had surgery and then traveled from Dallas to Austin! Talk about tough.
Chemo #8 was yesterday. It went by quickly. We went to lunch and then the benadryl they give me kicked in. I had to go get a pulmonary function test after chemo and I was so knocked out. I fell asleep in the car there, in the waiting room, and on the way back home. I crawled into bed and fell asleep for the next 4 hours. My ass was just dragging everywhere.
Cancer shower thoughts - I've been bitten at least 5 times in the last few days by mosquitoes through my pants. The mosquitoes in Austin are vicious this year because of all the rain and standing water. But what happens to mosquitoes that bite me and drink my blood? Do the chemo drugs affect them? If I'm so affected by my chemo drugs, I really hope they just die. Does my lower red blood count and white blood count mean they're not as full?
Here are some pics. Please enjoy this carefully curated gallery of my side effects.
Fatigue
This is why I basically go into hibernation for 3 days after chemo. I just have 0 energy.
When I get home from chemo:
Steroid Hunger
Dehydration
The chemo drugs just dry me the eff out. My whole body feels swollen:
And I haveintense dry mouth:
Nausea
I feel like I've been lucky in the nausea department. It's mild to moderate and I haven't thrown up yet. However, when I smell certain scents like our home antibacterial soap (unfortunate) or some flowers, I do this:
Hair Loss
My hair hasn't completely fallen out but it's certainly thinning.
My reaction when it fell out in the shower:
Constipation and Indigestion
How does this both happen at the same time? My poops are just .. so interesting now. One day I'm like this:
And the next day, I'm like this:
Chemo Brain
I lose my train of thought. My vocabulary has shrunk - I have a hard time finding the right word for what I'm trying to say. It's annoying af. When I walk into a room and forget what I'm doing:
When people ask me complex questions (usually concerning work stuff):
Shots In The Butt
I get my monthly Lupron shot in the butt muscle. It results in a welt-like bump and I have to rub it or else be sore for a few days.What this sounds like:
