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.
Today, I'm thankful for modern medicine and what's it has done for me in the last 11 months. I'm thankful for my husband who's been by my side through the whole cancer shittiness and continues to be my mind reader and best friend. I'm thankful for my family who have spent so much time making me comfortable through all this. I'm grateful for my in-laws who check up on me and send frequent words of encouragement. I'm thankful for my friends who think of me, support me with their messages, and allow me to do normal people things with them. I'm thankful that treatment is over and life is resuming!
I had my post-treatment PET/CT scan this past Monday 11/23. This scan comes 4 months after the end of chemo (7/24) and 1.5 months after the end of radiation (10/5). I'm not sure what to really expect out of this. Obviously I'm hoping for a clean scan, but my radiation oncologist had said that "it takes time for the radiation to work." what does that mean?! I asked him what he thought the PET scan might show and he dodged the question. I mean, he's not a psychic so I get why he did that. My medical oncologist wanted a scan a month after radiation ended, so that's what we did. I went through the same old spiel with the radioactive tracer and the contrast being injected in me. I could actually feel the contrast flow through my body. Extremely weird. This is the stuff that makes me flush and feel warm. It started in the back of my throat like I had ingested hot water. Then my belly got hot and the heat went through my arms to my hands and fingers. It flowed to my pelvis and made me feel like I had wet myself. I instinctly tried to reach down to make sure I hadn't actually peed on myself but they had strapped my arms down hah. Then the heat went down my legs and into my soles. It was like a slow moving hot flash that lasted 30 seconds. I of course fell asleep inside the scanner because I was in there for 30 minutes and the whirring noise is so comforting. I even woke myself up a few times snoring.
We won't get results for another 1.5 weeks because we'll be going on vacation!!
We're going to Boston this next week to do touristy things and dive into history. It'll be COLD. Ever since I lost all that weight (30 lbs) due to cancer and nausea from fertility treatments, I've been so susceptible to shivering and being flat out miserable in the cold. However, I've gained 25 of those pounds back, so I might be in better shape... Who knows. I'm still preparing for extreme cold (which will be like 40 degrees really). It'll be our first vacation in over a year so we're really excited to get away.
The last part (LAST PART!!) of my treatment was daily radiation at the cancer center in the hospital. I went everyday for 2 weeks from 9/22 to 10/5. Radiation was intimidating at first. I go back into a huge room with the machine, take off my shirt and bra, drape a pillow case (yes, a teeny pillow case) over myself and get into the table. The techs move the table around and align me with the green lasers that great a grid on the table. They then leave the room and close a thick heavy door and I'm left alone in that giant room. The machine comes to life and starts by taking an x-ray of my chest left-to-right and top-to-bottom. The radiation arm then starts to move to my left side. It starts radiation and makes a buzzing sound while it's radiating me. It radiates for 10-30 seconds, rotates 15 degrees clockwise, continues radiating in that new positions, and keeps doing that until it's in aiming at my chest from the top of me. It takes less than 10 minutes but it feels like an hour because I'm in this awkward position staring at the most boring set of ceiling tiles. I got over the intimidation factor after about 3 days. Those 2 weeks did fly by!
I actually started going back to work in the office the week before radiation started! It was such a big step and change for me to actually see and interact with people outside of the cancer treatment environment. There was about a month between the end of chemo and going back to work since I was waiting for my blood counts to recover and the fatigue to go away. I was having such bad anxiety about going back to work in that month. I would wake up in the middle of the night worrying about falling behind and not being effective at work.. even though I had been working (albeit at a much lower productivity level) the entire time I was going through chemo. But the anxiety went away as soon as I started going back to the office and getting things done. I left everyday for radiation and came back to work afterwards. I barely had any side effects from radiation - a little fatigue but not enough to make me stay home.
I'm almost 3 weeks out from the end of radiation now and the fatigue has gone away. I don't really remember what not being tired or fatigued really feels like since I had been feeling that since mid-2014, so I think I'm not fatigued.. But we'll see as I continue to get better! I have some minor darkness on my chest where I was radiated. All in all, radiation was nothing compared to chemo.
So treatment is done! I saw both my radiation and medical oncologists this week and they are pleased with the treatment and how I took it. However, I won't have a PET scan scheduled until the middle of November. That's more waiting, ugh. I don't think there's any cancer left in me other than the scar tissue of my mass, but I don't know for sure for another month.
I celebrated my 30th birthday at the end of August. It was a great celebration with my family and really great friends. I still can't do a mile running and I'm wasn't quite cancer-free then but I still celebrated the hell out of my birthday. Life is getting back to normal. My hair is growing like crazy and I keep meaning to get a haircut. It's so nice!
HELLO! So I really sucked at updating this past month and the title of this blog post totally ruined the PET scan results, so you can stop reading here if you're mad at me and have vowed to never read another post again. I understand. Bye, dear reader.
:'(
OKAY, now that my fake friends have left.. How are you guys!? I've had a pretty eventful August. Let me tell you all about it.
Post-chemo PET Scan
I had a PET scan on August 4th to see how much effect chemo had on the cancer in my lymph nodes and in the mass. Instead of getting the PET scan at the place I had gone to for my previous 2 scans (an external radiology place), I went to a branch of my cancer center that had its own PET scan machine. I asked the appointment people about the switch-up and they gave me some answer about getting results back faster (within 48 hours) from their own radiology people... even though the external place takes about 48 hours anyway to get a report written up.
Anyway, I got what I can only surmise to be a newbie nurse accessing my port for the radioactive tracer injection. Prior to this, my port was accessed every 2 weeks by some really skilled nurses. I mean, there's no avoiding the big poke of the Huber needle, but they minimized the pain and bruising. My experience with this new nurse was a comedy of errors. She vocalized everything she was going to do and moved extremely slowly to the point that I could FEEL the needle sliding. cringe. If you thought that was bad, she had to access my port twice. The first time, she stuck my port at the wrong angle and there was no blood return. I think it's quite a feat to stick a needle into a port that is connected directly to a vein and not get any blood out. She pulled out the Huber needle and I immediately started bleeding from where she had stuck me. I was a little shocked.. and so was she. So here I am with blood dripping down my chest and she was unprepared for the situation. I happened to be holding gauze to my finger where I was pricked for a glucose test and had to stop my own bleeding with that. She then re-accessed my port but not before popping a syringe of saline all over my pants (she was really excited to be doing this). After about 25 minutes of this fumbling, my port was finally accessed and ready to be injected with radioactive tracer. The injection of the tracer took about 2 minutes. hah. That whole access ordeal left me with 2 bruises at my port area and some residual pain (maybe it was in head?).
After that, I had a newfound appreciation for the chemo nurses who were able to access in under 5 minutes with little pain. SO THANKFUL. I emailed them and thanked them. And I thanked them profusely the next time I saw them. omg thank you. One of the nurses offered to access my port a day in advance of my next PET scan so I wouldn't have to have a rando doing it. <3 Enough railing on that other nurse.. the radiology tech was super good though.
I saw my medical oncologist about a week after the PET scan. My expectations about my results were...neutral. I didn't think chemo had taken care of all the cancerous activity and my oncologist had prepped us for that. When we saw him, he said there was still some activity (surprise) and he was going to forward my case to a radiation oncologist to take another look. The radiation oncologist was going to decide if I needed radiation and for how long. He said I had about the best result coming out of chemo that he could have hoped for because all my lymph nodes looked clean. I had mixed feelings - I kept telling myself that this was good news because no more cancer in the lymph nodes! But I'm still not done. At that point, I was 2.5 weeks out of chemo and my energy level was good. My white blood count was still low so I was still avoiding people. I was ready to resume normal activities, but this radiation thing was still looming over me. It's hard to get excited about results when this cancer thing was still not over.
I finally had a consultation with a radiation oncologist on August 20th. He actually pulled up my PET scan results from back in January when I was diagnosed and walked us through the different views of the bulky mass in my chest and what he thought about it. It was the first time I had seen the PET scan from January and it was slightly jarring, but so fascinating. I'm not a biology person (I got my first B in high school in biology and I still hold a grudge) and I know embarrassingly little about human physiology and anatomy (although dealing with cancer has taught me a great deal). I had the physical dimensions of the mass from the PET scan written reports but I could not and had not pictured it inside my body. After seeing the scans, all I could think about was how could I let this thing grow inside of me for so long and why did I ignore and downplay my symptoms?? To the layperson (me), it looked like the the mass almost spanned front to back in my chest. NO WONDER I had breathing problems! Where the hell was my lung supposed to go!? As for the radioactive tracer "lighting up" the cancer mass, it was like the sun was in my chest. The radiation oncologist also pulled pulled up my interim PET scan from April to compare (this was the scan taken after 2 cycles of ABVD chemo) and the difference was stark. The mass had shrunk so much relative to January. The funny thing was that he did not have access to the PET scan from early August. You mean, I went to your in-house radiology department AND had the worst port access experience in the last 8 months and you still couldn't get my PET scan results into my medical record after 2 weeks!?!? I was still grateful that he took the time out to walk us through the scans and talk through my case with me. He said my case was a little unique since bulky masses in Hodgkins cases usually are more centered in the body, but mine was to the left a little. He ended talking to my medical oncologist about the whole case, looking at my recent scan, and recommending radiation (20 sessions). Since the mass is right behind my left breast, there was no getting out of radiating that. We discussed side effects - short term is fatigue. Long term side effects (which are really rare) are heart problems (I'm going to be monitored by a cardiologist with annual exams) and secondary cancers (such as breast cancer. I will probably be starting mammograms early). He assured me that the radiation was low dose and the risks were low.. relatively.
I had a radiation planning meeting the week after that on the day before my 30th birthday. The radiation planning meeting consisted of a CAT scan and drawing on my chest. The nurse wished me a happy early birthday and then asked me to take a pregnancy test. She hadn't "realized I was that young" and since I was of child-bearing age and about to get scanned, they had to be sure I wasn't pregnant. Hearing her say I was really young really put me in a weird state of mind for 10 minutes -- I'm sitting here while she tests my urine on my last day of being 29, hoping I'm not pregnant (even though I know I'm not because abstinence really does work and I have an IUD to prevent immaculate conception), and thinking I'm waaaaaaay too young for this shit. But I guess it's better that I'm young? I've got the energy and resilience to fight this... I guess. It's hard to see an upside to getting cancer at 29, but that's one of them!
I got CAT scanned and got 3 dots tattooed onto my chest - 1 on each of my sides at about boob level and 1 between my boobs. The dots are going to be used to plan where they radiate and then during actual radiation to line me up with the machine so they can radiate the same spot each and every time. Getting those 3 dots tattooed hurt like a bitch! I don't think I'm ever going to get a voluntary tattoo. I did not and have not taken a picture of those because they are the most uninteresting tattoos ever. The dots aren't even the same size and you can hardly tell they're there. I also got a "vac bag" body imprint made. That sounds cooler than it really is. It's this moldable cushion (cushion is a too strong a word since it was hard and uncomfortable) that the tech molded around my body by using a vacuum to suck the air of this bag of stuff that will hold me in place during radiation.
My last chemo was Friday 7/24. It started like any normal chemo day and ended with me ringing the giant bell that signals the end of chemo. I hugged all the nurses and techs and shed a few tears. I had seen these people every week for 6 months and now, abruptly, I'm done. It was/is surreal! I slept and played Borderlands Friday through Monday. It was rough though. I got a new low in feeling bad - it was the most tired I had ever been. I had 0 energy and just wanted to sleep nonstop. I finally became lucid Monday and realized I was done with chemo. Oh man, the emotions. I cried tears of joy. The whole chemo experience was so hard and I had made it through. I felt amazing. It definitely got really hard towards the end but I did it!!!
I have been slacking off in the walking/running department. The fatigue and dizziness lasted for a week after chemo so walking then out of the question. The rest of the time, I took it easy and just walked around the neighborhood. I'm not gonna make my goal of running a mile by my 30th birthday :( it's still a goal of mine but I realized I have to slowly rebuild. This experience has brought me lower than I imagined it would and I can't jump back in 100% yet. One day though! I will get back there.
I have a PET scan tomorrow to see the current state of Karen. Will update again when I know more!
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:
haha, I should give myself a few days for the side effects of all the drugs to even out before posting happy things.
I get anti-nausea meds and steroids as part of the pre-meds prior to the chemo drugs. The pre-meds usually squash the chemo side effects (nausea, no appetite) until about 3 days after chemo. After that, I feel super fatigued and mild nausea. I am trying out a new anti-nausea patch (sancuso) this time around since my nausea after chemo #6 lasted about 5 days afterwards. But of course, this patch has side effects. The most noticeable one is a persistent headache.. that I then take ibuprofen for. It's one big side effect management game!
Guess who's back, back again. Karen's back, tell a friend!
Chemo #7 was yesterday and it was uneventful! When you have cancer, you want everyday to be uneventful. I don't want medical surprises.. I just want to get through this, get through chemo, and know there's nothing malignant in my body anymore.
I met another young person at chemo yesterday. He's also 29 and has a germ cell tumor in his chest and actually went to the same cardiothoracic surgeon I did around the same time I did earlier this year. The surgeon mentioned to him that he had seen a young female patient just a week before who had a mass in her chest like his. When I told him my symptoms, he realized the surgeon was taking about me. Small world! His chemo regimen is way more intense than mine.. 3 week cycles - week 1 and week 2 Mondays last 7 hours and week 3 is Monday through Friday, 5 hours each. My regimen is every other Friday and it only lasts 3 hours. He says it's curable and he should be done in July. I'm rooting for him!
I feel incredibly lucky - even though I've been dealt the shit hand of cancer, it's one that's curable. I have lots of support and not a lot of stress. I dread going to chemo because of the side effects, but they could be worse! My hair hasn't completely fallen out and my brows are still there! I have nausea but I haven't thrown up. My appetite is good. My anemia is non-existent. My succulents haven't died. I got married and gained an incredibly supportive and hilarious family. Life is pretty good!
I wish I could take credit for that title, but I can't. A friend said that to me this morning and now I have to write a post before Cinco de Mayo is over.
Chemo #6 was this past Friday and I'm officially halfway done!! Only 6 more chemo treatments to go!
The side effects this time are worse and more long-lasting. They include some gnarly hot flashes, wibbly-wobbly dizziness, and constant nausea (no cute adjective there because nausea ain't cute). My usual go-to of Zofran hasn't been cutting it. My next option is to take Phenergan which just knocks me the eff out. That's one way of dealing with it hah. I've been resisting taking it because I actually like being productive during my days. I couldn't do my usual stare-at-my-succulents for an hour thing during the day because a wasp has built not one, but 2, nests under the 2nd floor balcony and was busy tending to them. Seriously, who needs that much real estate?
Last week, my Uncle Tony and Aunt Bonnie and her husband Anthony came to visit from New England. This week, my in-laws are here! Yay visitors!!
My parents have been in town for this past week and my siblings came in for the weekend. It consisted of a lot of chilling, TV and the Mavs games.
So, PET scan results! I talked to my oncologist about them last Tuesday and he said he was happy with the results so far. The tumor has shrunk and my lymph nodes aren't lighting up as much as they did in the first PET scan. Good news! I will have to do a total of 6 cycles (12 chemo treatments). There is an end in sight, people! And it looks like it's before my 30th birthday! :D
So it's been about 38 hours since I finished my 5th chemo session! Figured I wouldn't wait a week to update this time haha
We got to the cancer center 30 minutes late because I'm usually slow in the morning, especially on chemo days. I didn't want to skip breakfast because who really wants to feel worse after chemo because you're starving from missing breakfast and roid raging?! No one, that's who. (I don't really roid rage, I just am fucking hangry!!!)
Chemo went by pretty quickly. I chatted with the nurses and the front desk lady. They are so NICE and FRIENDLY that it blows my mind. I love nurses.
Oh yea, I had a PET scan on Thursday, the day before chemo. I couldn't eat 6 hours before I was to be injected with the radioactive sugar at 1PM, so I woke up at 6:30 just to eat breakfast and go back to sleep. We arrive at 1 and wait for 30 minutes. I get injected with radioactive tracer coming from a syringe encased in metal that came out of a metal box. I then get bundled up in blankets and had a space heater blowing at me so that I don't tense up and cause false positives due to bad uptake. I am basically left alone in a room by myself for about an hour with instructions to not text or talk. Naturally, I fall asleep. I get woken up by the radiologist. He compliments me on my cateye makeup not once, but twice! <3 I'm in the boring PET scan machine for what I estimate to be 20 minutes. Of course, I fall asleep asleep again. You would think the novelty of medical procedures would still keep me wide-eyed and awake, but that's now worn off. It's 4PM by the time I'm done and can finally eat.
Okay back to chemo day. I eat a huge lunch and drink like 5 glasses of iced tea to try to combat the intense dehydration I feel after chemo. It doesn't really help and now I'm just peeing every 20 minutes. I get the usual hot flashes, rosy cheeks, and dry mouth and metal taste and in my mouth for the rest of the day. I nap for a few hours but the hot flashes keep waking me up. Being drenched in sweat is not fun to wake up to! For me, it's hard to regulate - I oscillate from shivering cold to sweaty hot easily. That might be the most annoying side effect this round.
Today, I went to the cancer center to get IV fluids to help me feel better. It does help with the dehydration feeling so yay! I walked about 0.8 miles after getting home from lunch and then slept for 3 hours. I don't exactly feel sleepy, just fatigue. The naps help, but the fatigue comes back quickly.
We had a big storm pass through Austin just now that brought pea-sized hail. My poor tangerine plant thing :(
I've got an appointment with my oncologist on Tuesday 4/21 to go over the PET scan results. I am nerrrrrvousss.
Chemo #4 started off like normal - I get to the cancer center around 9AM and get my vitals taken and blood drawn. They run a CBC while I see my nurse practitioner, Michelle. I claim a comfy chemo chair and start to settle in while Terri-Lynn start my premeds. About 20 minutes later, she comes back and stops my premeds. She says my neutrophils count was very low and she had to consult with Michelle before I could continue with the premeds and chemo. I eventually got the okay from Michelle, phew. Delaying my treatment is the last thing I want. Chemo proceeds, I fall asleep, I wake up, and I listen to the other patients talk. After treatment, I was STARVING and craving Mexican. I ended up eating 2 enchiladas and all of the sides of beans and rice. I usually don't finish all my food when we go out to eat, but the premeds (steroids?) make me really hungry for a few days after chemo. While we're on the topic of food, my eating habits have taken a turn for the worse. I crave fried foods, pizza, and hamburgers alllll the time and we usually give in to those cravings. Mom, do you read my blog? Please don't get mad :x
Day 2 consisted of getting the 1st of 2 neupogen shots and a heart echo to see if chemo has affected my heart. Spoiler - it hasn't! Neupogen is very similar to the Neulasta I got after cycle 1 but shorter lasting, which is why I had to get another shot on Day 3. After arriving at the hospital for the shot, I started feeling dizzy and weak. The nurse ends up giving me IV fluids and I do feel better afterwards. I'll probably start getting fluids 2 days after chemo now to help me feel better faster. On Day 7, I had a CBC again and it showed my neutrophils were way low again. I had woken up that morning with a tickle in my throat so my oncologist had me get another Neupogen shot to boost my immune system just in case I was coming down with something. Either my immune system kicked ass and stopped me from getting sick, or it was just allergies. I'm leaning towards allergies because I am allergic to everything in Austin - mold, oak, cedar, ragweed, cedar, dogs, cats.
We had dinner with Damien's sister-in-law (my BIL's wife) and niece one night and watched the Game of Thrones premier with the Game Night Crew another night. It is always so great to catch up with friends and family. The rest of the 10 days were pretty uneventful. My days were full of working, walking, and watching Daredevil on Netflix. Everyone should watch Daredevil - it's so well done and the fight scenes are interesting. It's a little (okay, a LOT) gory and there's a lot of violence and sometimes, I turn away, but it's good. My hair is still falling out but it's not noticeable since I'm bald anyway. My eyebrows and lashes are still mostly intact so when we do go out, I rock a full face of makeup with a bald head.
I have a PET scan scheduled for tomorrow 4/16 to determine how many more cycles I have left. I have to cut out carbs and sugars 24 hours before the scan, which is fine by me! I had steak (prime ribeye YUM) and broccoli smothered in cheese for dinner and it's basically the perfect meal. Cycle 3 begins this Friday! I feel like I'm making great progress in getting rid of this cancer crap and we'll know whether this is true medically after the PET scan results. I CAN'T WAIT!
