Insidious Tastebuds

I am finding that I don't notice the fact that I can't taste things quite as often. At first I thought it may be that I'm getting used to the lack of this sense. Then I began to realize that I could distinguish little nuances in foods. I wouldn't say that I CAN taste things, but I wouldn't say that I CAN'T anymore. It is such a gradual, insidious development. I guess I expected zaps of flavor... like one day tasting a certain spice or flavor and the next day tasting another. It's not really like that at all. Food just sorta becomes less and less bland. I feel like one day I'll just start commenting on how bad or how good something tastes and I won't even realize it.

The one thing that I still can't really taste is 'sweet'. Breakfast pastries just taste like bread. Ice cream is like really cold milk. Candy is pretty much just flavorless.

Regardless, I'm just happy to have realized my tastebuds may be coming back. I missed them greatly.

Douglas Adams was on to something

"A towel, it says, is about the most massively useful thing an interstellar hitchhiker can have. "

Replace towel with scarf (which really is just a thin towel) and I couldn't agree more. Since wearing my array of scarves whenever I leave the house, I have begun to realize its multiple applications, especially when I travel.

Already this morning I have utilized my scarf as follows:
Use 1 - style, warmth, and protection to my sun-sensitive neck.
Use 2 - napkin
Use 3 - bag
Use 4 - blanket
Use 5 - hankerchief
Use 6 - iPhone screen cleaner
Use 7 - "gloves" (hand protection from hot or cold)
Use 8 - blog topic :)

Well, my flight back to Tucson should be boarding shortly. I had a great time visiting my family, but it'll be nice to be home.

A bum bum

So right now my left leg / butt is kinda sore / bruised. To explain why let me start at the begining...

Tuesday morning at 2am, I woke up, ran to the bathroom, and started puking. Why? I don't know. I took my temperature. It was 97ish, so normal for me. I was slightly clammy, but feeling better so I went back to sleep. About an hour later I woke up again and repeated this process. This continued until about 9:00am. Needless to say, I had to take a sick day from work. :/ Was it food poisoning? Jake ate the same stuff that I did, so probably not. Maybe it was just a stomach bug. I had a couple sips of water throughout the morning, but nothing like what I normally do. Around 2:00pm I finally tried to eat stuff. For the rest of the day I had a smoothie and maybe 1/4th a can of soup.

Well, I guess that wasn't enough fluid intake with all the puking I was doing, because when I woke up yesterday morning I was quite dehydrated and I ended up fainting a few times... first in the shower, then getting out of the shower, then trying to brush my teeth. By the third fall I had woken up Jake. I guess I gave him a good scare. He said my eyes were wide open, just staring blankly. I didn't know that happens when you faint. Weird.

Anyway, this is why I'm sore today. I must have fallen on my backside. I guess I should be glad it wasn't my head!

I'm actually in the airport now, getting ready to go visit my sister, my belated birthday gift to her. This should be a fun weekend! I just hope sitting on the plane isn't going to make my bum bum any more uncomfortable.

No more chemo!

I got a voicemail from my MO's office this morning.  "Hi.  This is David from Dr. Kratz's office.  This message is for Jennifer.  Dr. Kratz just finished speaking with another physician and there will be no more chemo, but she wants to be sure to see you right after your next PET/CT."

Horay!  I mean maybe it's not super exciting.  On the one hand this means further treatment didn't seem beneficial and I still may worry that I didn't do everything I could....  On the other hand, I can finally start trying to get back to normal and I don't have to worry about going though all those nasty side effects again or losing my hair.  I am very happy about that. :)

I had a check-up with my RO last Friday.  He seemed to think I was doing remarkably well.  He told me he's been working on writing a paper about me.  I'm one of 18 subjects for who he modeled radiation plans to spare a major salivary gland.  The gland in my right cheek got about 1/10 the dose of radiation given by your average cancer center.  With the special tomotherapy machine that they used, they were able to really pinpoint the radiation to hit certain places and avoid others.  That is why even though I have to drink more water than your average person (especially with meals), my mouth doesn't particularly feel dry all the time.  Other patients I've spoken with can't go more than 10-15 minutes without water.  I can go an hour or two before it really starts to bother me.  Let's hope my RO's paper can continue to improve the quality of life for future oral cancer patients.

I still have many doctor appointments and health issues.  I have to schedule a swallow test and a hearing test to compare to the baselines I had.  I have to have bloodwork done monthly for a while.  I have to schedule a check-up with my ENT.  I see my MO for a checkup in about 3 weeks.  I'll see my RO in about 3 months.  I'll have a PET/CT in May.   I'm not 100% normal yet by any means. My saliva isn't up to normal levels.  I still can't taste most things.  My speech is labored and somewhat difficult to understand.  I have to watch out for signs of hypothyroidism as I will almost definitely develop this at some point because of the chemo.  I am still fatigued a lot of the time.  The insides of my mouth are extremely sensitive and eating almost anything causes blisters on the insides of the cheeks and lips.  The bumps go away within 12 hours and they don't hurt, but it's still annoying.

Like I said, though.... now that I know I don't need more chemo now, at least I can start trying to get back to normal.  I think tomorrow I will call the medical supply company and finally return that suction machine. :)

My 100th blog post

I can't believe I'm up to 100 blog posts already!  It seems like just yesterday I started all of this.

I don't have much to talk about today, other than the fact that my MO's office called.  They left a message saying they want me to call them back regarding the question we spoke about yesterday.  I assumed it was serious and apprehensively called them back.  It turns out they just wanted to let me know that my MO called that other doctor's office, only to find out he's out of town until Monday.  They just wanted me to know I shouldn't expect a call from them until early next week.  If that's all it was, why not leave that in the voicemail....  oh well.  The longer they put off giving me an opinion, the more I question how much I really need it.  They don't seem very concerned about its urgency regardless.

The longest I've gone between blogs

Well, things MUST be getting better.  I'm blogging less and less.  ha!

Truth be told, things ARE getting better, slowly, but surely.  Also, though, I've been pretty busy at work and at home taking care of chores.  Since I no longer am undergoing treatment, my husband has become less apt to help out with chores and I don't have friends or family coming over and offering to clean my dishes or do my laundry or whatnot.  I think some of the radiation/chemo fatigue is persisting, so it makes it a lot harder to get motivated to do things.  I may also be tired because I have started trying to get to work earlier.  There is a daily meeting at 7am, which I have never attended.  I would really like to make these meetings.  As of late I've been getting to work around 7:15 or so.... if only I could wake up 15 minutes earlier...

So, many of you out there may be wondering what I heard from my MO about TPF chemo.  The answer is nothing yet.  It has been a week, so I called her today.  I guess she's still waiting on hearing back from another doctor and she'll call me after that.  I've been doing research on my own regarding the subject.  There are a handful of studies showing a slight increase in survival rate when TPF is applied BEFORE radiation/chemo treatments.  There are many studies showing advantages to doing Cisplatin chemo in conjunction with radiation therapy (like I had done).  I have yet to find a single study that looks into TPF chemo AFTER radiation/chemo.  I found one journal that said there have been little to no studies on adjuvant chemo given post-treatment and what studies have been done show no advantage in survival rates.  At this point I'm really starting to wonder if it's worth doing and how critical it is if it's been over a month since I finished treatment and they're still debating whether I should do it or not.  I've already made plans for myself for the next three months.  I don't have time to let more chemo get in the way.  I'm going to visit my sister next week! :)  Then in just about 3 months time, my best friend from high school (and one of my bridesmaids at my wedding) is getting married.  I'll get to see a bunch of my high school friends.  It'll be a walk down memory lane.  Regardless, I don't want chemo to interfere with my trips and I don't want to show up at a wedding nauseated and bald.   *sigh*  Like I've said before, though, I'm just going to have to wait and see what the doctor suggests and go from there.

An update on tastes...  I seem to be getting back hints of bitter, sour/acidity, and spicy.  You may think this is great.... but when you eat a hot dog and all you taste is relish and maybe a tinge of ketchup, that's kinda gross.  Or when you make a french silk pie for Pi Day (3/14 - yes I am a dork) and all you can taste is the bitterness of the chocolate, it's kinda disappointing.  The other night we went out for dinner and I ordered fish and chips.  The comforting fattiness of the fried food (which I've realized doesn't have a taste really anyway) and the ability to somewhat taste the tartar sauce actually made for a pretty yummy dinner.  With it only being a month post-treatment I am optimistic my tastes will return earlier than average.

I still have to down 2-4 large glasses of water with every meal, which makes me have to pee a lot (including 1-3 times in the middle of the night).  This may also be why I seem to be tired a lot, lately.  Oh well....

So....  overall things are on the up-and-up.  I'll let you all know when I hear from my MO, but for now I am just happy for the little improvements I continue to see.

I don't want to lose my hair

So I had my check-up with my MO today.  My bloodwork and everything else looks good.  I don't need more bloodwork for a month and I'll get a PET scan in another 9 weeks.  All seemed good.  Then we talked about the possibility for more chemo...

My MO wants to do a bit more research and will be calling me within a week.  Many head and neck cancer patients receive TPF (docetaxel, cisplation, and 5 Fluorouracil) Chemotherapy, which consists of a 5 day infusion of those three drugs once a month, for three months, followed by radiation with continued doses of Cisplatin.  Other head and neck cancer patients receive just the Cisplatin with radiation, which is what I did.  The first treatment plan is better for advanced, aggressive cancers like the one I had, but requires a 9 week time frame before beginning radiation.  My team agreed by the time I saw my RO that it was best to begin radiation right away.  9 weeks would have been too long to wait.  The suggestion now is to tack on the 3 courses of TPF now that my radiation is finished.  My MO does not have a lot of research data on that protocol, so she is currently talking to several other sources before she makes the final recommendation.  The idea would be that this other course of treatment would kill any possible remaining cancer cell that is left now, once and for all.  If I were to have another recurrence, that might just be the end of me.  We want to hit this thing with everything we got, now, while any cancer that may still be remaining is microscopic and easy to kill.

That being said, I asked my MO how the side effects from those two other drugs compare to Cisplatin and what I'd have to look forward to.  The answer was not very pleasant.  In addition to the nausea and fatigue, from least to most worse (in my opinion) the three drugs would compound the chances of neuropathy and/or tinnitus, they would give me horrible diarrhea,  they will cause radiation recall (bringing back the mouth sores, lack of saliva, and radiation burns), and all my hair would fall out.  Given that information I don't know if I could handle going back on chemo.  I almost think I could handle the radiation recall, but I don't want to lose my hair.  Not only does the hair on your head fall out, but so does everywhere else....like your eyebrows and your eyelashes.  I just don't think I could handle that.

I really don't know what I'm going to say if my MO suggests I should do it.  I don't want a recurrence.  I don't want to die prematurely.  I don't want to have in my mind the constant fear that I didn't do everything in my power to fight this cancer.  But....  I don't want to subject myself to such torture.  I don't want to have to worry about missing work again or going out on disability.  And most of all, I don't want to lose my hair.

I like my new size

Today was a good day.  I got a few chores done this morning and felt productive.  Then this afternoon I went shopping with Jake.  Jake got some shoes.  I got a bunch of new clothes, 2 pairs of dress pants, 2 pairs of jeans, and 5 shirts, actually.  They were all 1 to 2 sizes smaller than my current clothes, so that just made me feel really good.  I think that my new sizes (S or XS shirts and size 4 short pants) are a lot more popular, though, and I had a really hard time finding dress pants in my size.  I'm having to hem one of the pairs I bought, even.  Jake and I went out to eat for dinner, tonight.  I ordered an appetizer as my main course and only ate half of it (and I couldn't really taste it, of course).  It didn't matter, though.  I was just excited to be out at a restaurant again.  I don't think I've been out to eat in a few months.  So yes, it was a very good day.

On the downside, I'm a bit worried that I will soon outgrow my new clothes.  Over the course of treatment I lost 20 pounds.  I think my metabolism is ridiculously low, because near the end I was barely consuming 700 calories a day and puking a lot, yet I managed to not lose all that much weight.  Now I'm eating again, but it takes me so long to eat, my portion sizes are much much smaller.  I am not really consuming that many calories per day.  Even so, this past week I put on 5 lbs!  I'm hoping that my body was just regaining muscle and stabilizing itself or something.  I don't mind the 5 lbs, but I don't really want to put on any more.  I kinda like my new size.  I'm thinking maybe I just need to be more active again.  I used to be good about using the elliptical machine or doing yoga or something about 4 times a week.  I sorta gave that up last October when I was diagnosed with my recurrence.  It would be nice to jut use the elliptical machine every once in a while and keep small portion sizes and be able to stay this size.  If I have to be more drastic than that, I am going to be very very sad.

One more complaint for the day.  Waiters have a tendency to ask you "how's everything tasting?"  That is very annoying when you can't taste things.  I kept just keeping quiet tonight and at one point the guy was like "Is everything ok?"  I don't know... maybe I just should have yelled "I just finished radiation treatments to my head and neck and my tastebuds are fried.  I can't taste anything!".  Eventually I just started lying and saying it was good.  Oh well..... it's interesting what people don't realize sometimes.

Flavorless and frustrating

I haven't posted in a while.... no news is good news, right?  Well, mostly...

Things continue to improve daily.  I'm spitting less and my mouth sores are visibly shrinking.  I'm down to two main ones that are under my tongue, one on the tip and one to the left.  I try to avoid getting food particles under my tongue when I eat, so most of the time it's not so bad.  I haven't needed to use my suction machine in a couple of days.  I've even made it a few nights without having to wake up because I'm coughing or gagging from too much saliva or lack thereof.  Yes, things are looking up.

That being said...eating sucks!  Every night, I decide on something fabulous I've missed eating and want to try.  I sit it in front of me and take in the smell.  I get so excited, thinking it's going to be so great eating it again after all this time.  I take a bite.... and nothing.  It's completely flavorless.  Then I'm forced to use water to even get it down.  It's just a huge letdown.  An hour later, when I've had a kid-size portion of food, I give up and refrigerate the rest. 

Today at work I was eating mac and cheese.  My coworker, who is a 1.5 year survivor of head and neck cancer, saw me and said, "mmmm.... macaroni and cheese.  I bet that slides down easy."  Yeah, I guess so.  He told me there will come a day when just finding food that slides down easy will make me happy.  He says when he goes out to eat with his wife he specifically looks for restaurants with cream soups so that he can have something pleasant to eat.  I really doubt that will ever make me happy!  This whole ordeal with food is just frustrating.  I love good food.  I want to be able to taste it and appreciate it again.  My coworker has just recently regained taste.  I don't want to wait 1-2 years to get my taste back!  That's so long!  :(  I guess I just have to keep reminding myself of the alternative.... having taste and not having done the radiation treatments, which would have certainly killed me within the next few years.... and then I wouldn't really be able to appreciate food anyway, now would I? :\