it’s most definitely another.

Good news: Habanero Mouth is all gone as of yesterday afternoon, praise the Lord!  It is hopefully only a 4-day stint.  In addition, I also discovered that I can take pain medications for it and have thus gotten my refill of oxycodone from my oncologist along with a “magic mouthwash“.  There are a number of concoctions recipes, but the one that you want is with viscous lidocaine (yep this is the same stuff that dentists use to numb you up before a filling). The magic mouthwash however, does not really work as well as I thought it would.  It does numb your mouth topically, but if the pain is mostly neuropathy-based (which I am guessing mine was) it barely touches it.  I feel like for patients who have actual sores or ulcerations, the magic mouthwash would do an amazing job for.

Labs are pretty good minus a somewhat low platelet count.  Basically I have to be careful about not being clumsy and avoid bruising as that could cause some blood clots.  We wouldn’t want that.  Nor would we want to cut ourselves in anyway that would cause a bleed because I wouldn’t be able to form clots very well either.

Bad News: most of the side effects like the GI issues and bone pain are going to be ongoing and are due to the chemotherapy.  The bone pain is caused by the bone marrow going into overdrive in trying to make new cells after my current cells are wiped out.  However, it’s usually manageable with warm-hot showers.

The GI issues however, have taken the place of Habanero Mouth as the bane of my existence.  It is actually the reason why I am up at 2am in the morning writing this post.

Gas is now 24/7 with pain, and I honestly cannot remember the last time I was actually NOT in pain of some sort.  Acid-reflux is back and to the point where I have a sore throat from it.  Keep in mind, this is AFTER the fact that I have maxed out my daily dose of Zantac 150mg (2x/day) AND Simethicone/Gas-X 80mg (6x/day).  I have tried eating smaller meals and more frequently, but whether I eat or not, it doesn’t seem to do anything.  Recommendations were to eat a lot of yogurt which I have been doing (at least 3x/day) in addition to drinking ginger ale.

And of course, things always seem to happen AFTER I see my oncologist.

In looking at things, I would rather have the tummy issues than the burning mouth.  Why? Because I am a complete wuss when it comes to pain.  God only knows but they are going to have to give me two epidurals during childbirth.  However, in knowing that the burning mouth can be controlled (and controlled very well mind you) with pain medications and that it lasts only 3-4 days while the GI issues are 24/7 EVERYday, I am actually stuck as to which is the lesser evil.

It is true what they say: when in pain, you don’t want to do anything.  You almost can’t.  If it doesn’t immobilize you, it zaps your body from any strength it has because you’re tense and physically stressed in trying to deal with it.  I’ve had several recommendations to “treat [myself] well” by minimizing the amount of “pain” and/or “suffering” that I will endure.  However, when you’ve maxed out on all your GI pills and you’re still in pain, what do you do?

I suppose a good first step would be to call the clinic in the morning and ask.

On that note, this is the R/g signing off in an attempt to sleep, flatulence and reflux be damned.

Bane of my existence.

They say that my regimen of ABVD is really well tolerated.  Well if you are comparing it to superheroes then perhaps, but the past 48hrs have been pure hell.  While I somehow seem to have more energy post-chemo (possibly due to my Qi sessions, saving for another time), the post-chemo side effects are undoubtedly getting worse.  Current symptoms are:

• mucositis (inflammation of the mouth and oral soft tissues):  some people will describe it as “Hot Wing Mouth”.  Truth be told, I am almost wondering if it is part neuropathy as well the color and texture of my oral soft tissues look pretty okay.  I do not have geographic tongue this go-round.  What It Feels Like: extreme pain with random onset of your entire tongue and mouth.  As if the outer epidermal layer of skin is being ripped off slowly.  Certain types of foods can cause it, or all types of foods can cause it.  Mine is unfortunately, sporadic.  Even as I write this, I’ve already gotten about six or seven “burn episodes”.  The worst part: it is so painful, it wakes me up from my sleep so I can only get in about 3hrs at a time.  I am debating calling in myself a “magic mouthwash” if my oncologist won’t do it on Wednesday.
• Excessive watery saliva:  I’m not sure if this is a response to the mucositis, but in the span of 7hrs, I have spat out about 200cc (200ml) of extremely watery saliva.  (This can’t be normal…)
• Bone/Joint Pain: this is one of the less-common side-effects, but two days after chemo it felt as if every single joint in my body ached to the point where I didn’t want to move.  If I made myself get up and do cardio, it was okay and I had some energy, but the ache never truly went away.  Last night I finally just sat in the tub under the shower with warm-to-hot water (not too hot so as to avoid burning the skin) which helped somewhat.
• Difficulty w/ urination: this is supposed to happen with Vinblastine.  I’m taking in 2.5L of fluids a day to keep hydrated but it’s still not a full gallon like I’m supposed to.  Habanero Mouth makes it difficult to put anything in right now – as much as I’d like to down the Gatorade, there’s a crapload of sugar that both cancer cells and dental cavities love.
• GI gas:  it’s not exactly indigestion, but it’s almost as if your stomach and bowels just want to produce a ridiculous amount of gas.  Yoghurt usually helps quite a bit if you can take the initial sting of it hitting your inflamed tongue.  Needless to say, it can get to the point where you look like you are 4mo pregnant.

Perhaps the WORST is the mucositis / burning mouth.  You never know when it’s going to hit, you don’t know what you can eat, and you don’t know how long each pain episode will last.  Last time, this only lasted about three days.  Hopefully it doesn’t go longer than that with subsequent chemo treatments.  I’m not sure how I’ll get through a full week of Habanero Mouth.

Until next time…

Today we are going to talk about some conflicting issues that arose starting the day of chemo.

I made the mistake of buying lunch at the cafe at Emory Winship on Thursday.  Guaranteed, this was my own fault as I was extremely tired from waking up at 530am, but I should have known better than to get the chicken salad croissant sandwich, made with nothing other than of course honey-mustard mayonaise.  The fool in me figured that I could handle it being that I had been eating really well all week and had even gained 3lbs.  It did not factor in the fact that mayonaise has raw egg, and that if it tasted off to begin with, it might not have been the freshest thing.

And of course, I ate it anyway.

That being said, I woke up at 3am on Friday morning (the day after chemo) with incredible stomach and intestinal pain, intense amount of gas, and doing the #3 multiple times over the span of 2 hours.  This of course, made me panic because I did not want to end up in the ER with a GI infection over the weekend given that my WBC counts would be dropping over the next few days from chemo.  It did get better after some of it got out of my system, but there was still looseness in the stools and still a crazy amount of gas.  Tip: bring your own food.  It’s always cleaner and usually healthier than anything served outside, even at a hospital.  Some patients are lucky enough to be able to get Subway and fried noodles or whatnot and be completely fine.  It’s definitely a personal risk but to each his own!

After calling my clinic and talking to a nurse, I was advised to keep on my current track of taking care of myself.  That was pretty much bland foods, lots of gatorade, and monitoring for fever.  I was still taking my Zantac to prevent acid production (but this does not minimize the gas from food poisoning mind you, it just helps it a little).  Tip: I found that eating saltines or some sort of quick-starch as a mini snack helps minimize the gas production in the stomach.  Since I was already on Zantac, I wasn’t too scared about the constant acid production from eating more carbs.  Tip: rubbing your stomach area with your hand in a circle helps get the gas out.  Just be prepared to be rude and tooty!

So here’s the problem: chemo makes you pretty darn nauseous.  Or it can be.  They do give you a wonderful drug called Zofran that you can take, but…it makes you constipated.  So now I am fighting off the nausea without Zofran but at the same time, trying to eat before geographic tongue comes back next week and minimize weight loss.  On top of it, I can’t eat anything that I want because of the damn food poisoning.  So we are in a conundrum….

if I cared HAHA.  Which I do don’t get me wrong.  The intestinal pain is no joke – it can literally cripple you and you just don’t want to move.  But, I am more fearful of not being able to eat next week than I am of stomach pain.  Tip: vinegar (balsalmic is my personal preference) helps me cut out the nausea from the chemo.  So does yoghurt or yoghurt-based drinks with active lactobacilli cultures.  

I have to admit, vinegar probably is not good for food poisoning and definitely not advisable for acid-reflux, but it works for me when it comes to not being able to take Zofran.  Who wants to be constipated anyway?!  The less drugs you put in your body, the better.  God didn’t mean for you to be plugging all sorts of pills in there anyway!  As for the yoghurt, well I find that it does wonders for the stomach.  Being Asian, my go-to are those mini yogurt drinks that come 5-in-a-pack.  They DO have sugar though so please brush and floss as much as you can!  And dilute your Gatorade! (It’ll also force you to drink more fluids because you know you’re only getting half the amount of electrolytes by thinning it out with water).  We will do a post on dental care some other time

Hope all of you are having a great weekend!

Thank goodness for Emory guest internet!  This post is currently “live”, and we are mid-treatment.  Today is round 2 of cycle 1.

Countdown: 10 rounds

Current music playlist (via Spotify): Deadmau5, Kaskade, ATB

2pm: The first thing I get is my anti-emetic drug (Zofran) and my steroid (Decadron).  Tip: Take a stool softener and OTC laxative starting one day before chemo.  One of the side effects of Zofran is constipation, and believe me, there is nothing like being tired, pukey, and having to exert extra energy on the porcelain god to really make your day.  Some people will say not to eat your favorite foods during chemotherapy as the Adriamycin will give a bad taste and it will ruin the experience of eating those foods in the future.  I may change my stance on this after future rounds, but for now, I don’t have a taste alteration.

440pm: The “Red Devil” (Adriamycin) has already been entered.  It really does make you pee red kool-aid.  Bleomycin has also been in – so far no respiratory issues yet!  Dacarbazine is still infusing.

An infusion bay is where all the outpatient chemo patients come in to get their treatments.  I have a super awesome double-port (two wells) that they use.  Today, my nurse Kay accessed the outer port (using this as a reminder to use the inner well at my next treatment).  There are outlets for you to plug in computers which makes the treatments go by quicker.  It’s always nice to be able to chat with friends online and to blog as well.

I would say that my initial experience in an infusion bay was one of restrained terror, but the events leading up to that day had not made it any easier.  I had been to the hospital almost every day that week for tests, was sore and cut open, and terrified of what was going to happen.  Luckily, my first treatment was among the first in the morning so there was only two or three other patients in my bay.  It makes it feel a little less stressful, more private, and somehow it’s easier to “bond” or to have some sort of empathetic feeling about the whole experience.  Today I was not so lucky and had to get packed in with an afternoon appointment.  Tip: if possible (as in you are not working or you don’t mind waking up at the butt-crack of dawn) try to get an early morning appointment.  They are usually less stressful, less packed, and everyone is much more relaxed.  

My nurse Kay (KayAna) is pretty awesome.  She thought that I was 18 and started off our nice patient-nurse relationship amp-ing me up with a positivity and pro-active cheer talk.  And then she found out I what I did for a living after I asked her if by sucking on ice-chips, it would prevent the chemo drugs from potentially reaching all the lymphatic tissue in the mouth HAHAHA. So we talked about implants instead! Sometimes I do wish I had a job like admin or something that would keep life more “normal” and keep my mind off things, but at the same time, I see this as a blessing and the opportunity to re-evaluate a lot of things that we probably all overlook or take for granted.  Kay actually said to me today, “Make sure you are happy.  Do whatever it takes for you to stay happy and stress-free.  It’s a time for you to really take a look at things,”  and I couldn’t agree more.

503pm: Dacarbazine is finally done.  Vinblastine is up on the rack.  So hopefully no more than 30 minutes and we’ll be done!

Pole Dancing — your IV pole comes and goes with you.  So learn to walk, talk, and dance with it because you’re going to have to take it with you when you go to the bathroom for the fifth time in two hours.  Literally, I have to pee almost on the hour.  Tip (as advised from Kay): drink at least 1 gallon of water or fluids a day.  (They did not tell me this over in oncology).  I knew I had to be extra-hydrated but I didn’t know the recommended amount was a gallon!  This is why Kay is awesome.  I hope I get her the next time!

525pm: All done!  Hope you guys enjoy the update!