A series of serious posts #4

Fertility

There isn't much new going on with me.  Most foods still burn and I've found I don't like soup mainly because it's warm and I can't just gulp it down quickly.  So, I continue to eat lots of yogurt, poached eggs, ice cream, and ensure.  After all of this I am really going to look at food a different way.

That being said, since I didn't have much to write about me, I thought it was time for another serious post.  This one is on the subject of fertility.

I briefly stated before that chances of the chemo playing an effect on my fertility are low, and while they are low, they still exist.  The chemo damages cells, both normal and cancerous, so right now, they are destroying or damaging several of my eggs (and therefore putting me into menopause earlier in life).  I am young, so I'll still have quite a few left after this is over; however, for just slightly older patients, it could potentially take away all their chances.  Even the eggs that aren't destroyed might be damaged and therefore not able to be fertilized.  It will probably be harder to have children when that time in my life comes....

And when will that time in my life come?  I don't know.  My husband I have talked about this issue of course, but for the most part it's "We don't want kids now.  Let's see how we feel in a few years."  It's a scary thing going into cancer treatment being told that the chemotherapy might cause infertility and do I want to pursue freezing any of my eggs.  I haven't even thought that far in advance.  Also, freezing eggs would delay treatment for up to a couple months and is that really wise?  Freezing eggs is expensive too....like $30,000 and up.  I basically told myself that if I become infertile and want kids then I'll just have to adopt.

Now adoption is also a tricky thing with cancer.  Many foreign countries do not let you adopt if you've had cancer.  Also, many U.S. adoption agencies require you to be in remission at least 5 years before they let you adopt.

I am at a good age for all of this I suppose.  I still have a lot of my eggs, so I shouldn't lose my fertility.  If I do want kids down the road, 5 years from now seems like a good timeline.  Even if I have my own children I'd like to wait 5 years.  5 years gives me the "cancer-free" stamp and quite a bit more assurance that I won't have another recurrence.  I don't know though....adoption seems like a good idea.  I worry about passing on my genes.  What if my cancer is genetic?  I wouldn't want to wish this on anyone.

So, while having cancer has pushed me more towards wanting to adopt than have my own children, it has not (so far) had a major impact on my fertility.  You can see how this might have quite a bigger effect on someone even a tiny bit older than me.  Also, this is all for doses of Cisplatin.  Other chemotherapy drugs have a much higher risk of infertility.

It's just all a lot to think about in a time when I have enough on my mind.

***For more information or help dealing with cancer and fertility issues, http://www.fertilehope.org/, is a great resource!***

I used to love Fridays

Well, it's the morning, so I feel a whole lot better. Last night was one of the most miserable so far. The radiation treatments compound on top of each other, so by the time Friday night rolls around it's pretty awful. I'm so thankful I have these two days off to get a little better and even more thankful I only have one more Friday treatment (I should finish on Thursday 2/11).

I used to love Friday nights. Friday is pizza night at our house. We either make or order out pizza and then usually rent a movie. Last night the smell of the pizza was awesome, but I was forced to chug down a melted vanilla milkshake that caused burning inside my mouth (although not as bad as the chocolate one from Thursday - turns out caffeine causes irritation/burning). Throughout the movie, I had to force myself to stay awake and focused. I just felt so fatigued. I actually look forward to Monday mornings now. That's when I feel the best.

Oh well, 9 more treatments to go. Single digits!

On the eating front, I tried some cream of broccoli soup, but it was still pretty painful. I think the bits of broccoli were irritating my tongue. The two things that work the best are yogurt (namely peach and vanilla) and poached eggs. I'm actually getting really good at poaching eggs. They've been turning on perfectly. So that was breakfast this morning, peach yogurt and two poached eggs. Maybe for lunch I'll try a different type of cream soup. We'll have to see how that goes.

burning and gagging

Things continue to go fairly well.  I'm getting more tired as the week wears on.  I think I spent most of today napping.  At least tomorrow is Friday.  Then I get a 2-day break from treatment to recouperate.

I have two complaints today.

1.  Burning - My mouth feels pretty great (like maybe a 2 on the pain scale) most of the time.  But then...as soon as I stick food in my mouth it just starts burning (depending on the food, up to a 6 or 7 on the pain scale).  I've tried extra strength tylenol, numbing it, and using a spoon to try to bypass sores.  Nothing seems to help.  I know I need to eat, so I'm just trying to find high-calorie food I can eat quickly.  Yogurt only seems to increase the pain to a 3 or 4, so that works, but isn't a lot of calories.  I melted a McDonalds shake for dinner and then gulped it down.  That was 750 calories...so a good choice, I suppose.  I wish I could find something that didn't hurt so much, though.  Even the ensure is super painful.  I guess this is my punishment for opting out of the feeding tube.

2.  Gagging - My gag reflex is ridiculous.  I gagged on the honey on Monday and threw up.  I gagged on the oral gel medication Tuesday and threw up.  Today I sorta aspirated (went down the wrong pipe) some water, which caused me to gag and then throw up.  When it's super hard to eat, throwing up half my calories doesn't help.

From the beginning of all of this I put on 5 lbs, then lost 10.... so right now I'm only -5.... not too bad.  On average, even people with feeding tubes lose 20 lbs during treatment.  I would hope I wouldn't lose another 10 within the next two weeks, but if it burns to eat and I keep gagging, who knows.

2/3rds done!

22 treatments completed and 11 to go.... 2/3rds done! Woohoo!  I'm treading that line of "Are we there yet?" and "Wow, I can't believe I'm that far along already.".

My throat has started getting more sore, especially at night when I'm not drinking water.  I've been waking up more frequently with mouth pain, so that kinda sucks.  Despite that and the myriad of other side effects I've discussed, I am doing quite well.  I feel pretty good most of the time (i.e. when I'm not eating).  Eating sucks a lot.  It's pretty painful and hard to do, but I still think I prefer this to having a feeding tube.  We still have over 2 weeks of treatment before I give the final verdict on that one, but for the time being, I am content.

I guess that's it for today.  Time for dinner. :(

I think I jinx myself on Mondays...

So yesterday was fabulous!  I felt almost as good as I did before treatment.  Other than the mouth sores, I felt in tip-top shape.  Yesterday was my weekly check-up with my RO.  He said I was doing extremely well, much better than most this far along.  I was defying the odds.  I was telling him how great I felt and how I was making plans for the week or so following treatment.  He looked at me and said this defying the odds might not last forever and I needed to be realistic.  But I felt so good.......

Then I woke up last night with a sore throat.  Uh-oh.  It doesn't seem as bad not that I've woken up and taken some magic mouthwash, but still....  I still have 13 treatments to go.  When my throat swells up and when I lose the ability to swallow, that's when there's talk of treatment delay and/or a feeding tube.  Let's hope it holds out the next couple weeks.

Also other side effects to note: an increase in tinnitus (ringing in my ears) and an increase in my hands/feet falling asleep.  The chemo can cause damage to the inner ear and neuropathy, so I need to keep a close eye on these two symptoms.

Well, let's hope the sore throat stays at bay.  Note to self - stop relying on how well I feel on Mondays.

A series of serious posts #3

Healthcare/Insurance Sucks

I don't care what side of the Obama Healthcare reform you're on and frankly I don't want to get into a debate about it, but regardless of all of that, you have to agree the current state of our healthcare system sucks. 

I got in all my paperwork to start filling out my itemized deductions worksheet for my taxes and started getting excited that would be able to write off all these medical expenses from last year (which didn't even include my most recent stay at the hospital).  I have an FSA (flexible spending account) that allows me to pay most medical expenses with pre-tax dollars.  Sounds good, right?  Well, not really... you have to get everything to check out just perfectly at the end of the year and if you don't put enough on it, it's not worth it and if you put too much, you lose money.  Regardless, I had $1000 on this account last year, which I easily consumed in copays, scans, and prescription costs.  I think that ended up saving me like $15 or something in taxes.  Woohoo. :\  In addition to that, with Jake and my medical bills and my travel to/from doctor appointments (at 24 cents per mile), I calculated we spent over another $4000 on medical expenses in 2009.  So good.  I can write that off my taxes, right?  Wrong!  For one, you can only write off anything above 7.5% of your income.  So, in order to claim any of the $4000 of expenses, we would have to make under $50,000.  That isn't so ridiculous, but that's just to start claiming a few dollars of that amount.  You have to either have really low income or have a ridiculous amount of expenses in order to start declaring anything.  But, if you make over $80K, you pretty much aren't allowed to declare any expenses at all.  Lesson learned:  Trying to right off medical expenses on our taxes is worthless.

Secondly, I have a GREAT healthcare plan.  I work for an amazing company with great benefits (one of the reasons I applied there and I am so thankful for that now).  However, the insurance still sucks!  Even with the great plan I have, the Mayo Clinic where I had my surgery was counted as an "out-of-network cost".  Supposedly, I could have had any head and neck surgeon do my neck dissection this past November.  There was no need to see a guy who does 2 or 3 of these things a week.  The guy who does 2 or 3 a year is just as good.  I had my ENT send a letter weeks in advance of the surgery requesting it be counted in network.  I got the denial letter the day I got home from the hospital.  I appealed and got a second rejection letter in the mail yesterday.  It basically said 'not knowing that you had an in-network option is not an excuse'.  That's not even what I said in my appeal letter!  I said my ENT told me there was only one place to go for head and neck cancer surgery and that was Mayo.  I didn't realize an in-network place was even an option, nor do I think it is!  Stupid insurance.  Lesson Learned:  Insurance companies suck and will try to get every little dollar out of you.

So now I'm trying to decide if I appeal again or not.  At this point I'm tired of dealing with them.  Of course, that's what they want, right?  That's how they get me to pay out-of-network costs.  I should just be thankful that my plan caps out-of-network costs at $6000.  My bill came in last week at over $8000 (which was only a tiny fraction of the cost, even my out-of-network benefits covered 70%).  So now I have to deal with the insurance company trying to rip me off for the other $2000 plus of out-of-pocket expenses they're trying to get me to pay that I'm not supposed to.  Also, once I get that figured out, I will haggle with Mayo and see if I can't pay less.  I hear you can negotiate a good 10-15% off large bills if you tell them you'll pay in full.  I hate haggling, but it's worth it to save a few hundred dollars.  Lesson Learned:  Insurance companies still suck.

Anyway....sorry for my rant, but I just needed to vent about my crappy insurance...and I have a GOOD insurance plan!  I can only imagine if I had to pay the entire tens of thousands of dollars of medical expenses.  I should be thankful. :\

A tisket, a tasket...

A pink and lovely basket.

My coworker (and good friend) just stopped by with a basket of goodies from my coworkers.  I think she was pleasantly surprised to see I was doing a lot better.  A lot of my coworkers had been talking behind my back about how bad I looked and that they were surprised I was still working.  Whoops.  I guess I should have started short term disability a bit earlier.  My blood counts have mostly returned to normal levels, apparently that's what staying home from work and resting will do for you.  The basket was full of all sorts of fun liquid-y things like yogurt and pudding and a card signed by about a billion people.  I have to say I feel very loved.  I'm sad to be away from my coworkers for 3 more weeks.

I guess I'll go eat some pudding and think about how much I love my coworkers.

19 down, 14 to go...

I haven't updated much this week.  That's because it was a pretty rough week.  I told Jake I finally felt defeated.  I couldn't work anymore.  I couldn't adequately cook and clean.  I was just a mess.  He reassured me that was not "defeated".  I would be "defeated" if I gave up on treatments.  So...I am not defeated, then, just very worn down.

Today seems to be a bit better.  I seem to be able to read this computer screen alright, so the blurry vision pills must have started wearing off finally.  I think I may be a bit hungry again and am looking forward to making a smoothie for breakfast.  It's the weekend, so I get two days to not have to worry about treatments.  Things are looking up.

And hey, I have less than 3 weeks of this left to go and my mom is coming Monday to help out for a bit.  I think things are looking up. :)

Woh-oh We're halfway there

I passed the halfway point today.  It has been rough the past two days.  I am so fatigued and my magic pills didn't work as well as I hoped.  I haven't been able to keep much down the past two days.  I officially went on short term disability at work....or at least am in the process of applying for it.  The magic anti-nausea pills cause blurry vision, so I have a hard time typing this, as well.  So  I guess that's all I have to say for now.  Hopefully things will begin to improve enough for me to type some more in days to come.

It worked!

Just a super quick post to say that I succesfully woke myself up every 3 hours to take my anti-nausea meds and I am not nauseated this morning. Horay!  I am pretty tired due to the interruptions to my sleep, but definitely not nauseated.  AND the steroids in one of the pills seem to curb some of the mouth sore pain, as well.  Let's hope the pills keep it up and keep me from feeling too bad today.

nadir [ney-deer] - the lowest point; point of greatest adversity or despair

I answered my question from last Monday.  Apparently the answer to "how low can you go?" is 1600 cells per microLiter.  That was my level of white blood cells in my CBC this morning.  Normal range is 4000-10000 ish.  My bloodcounts have reached the nadir of treatment and I bottomed out at 1600 cells/mcL.  Apparently this is borderline enough to possibly stop treatment.  I am at great risk for infection/flu/etc.  We decided to go ahead and continue with chemo today, but I will be working from home fom now until my counts are higher.  I need to start avoiding public places and checking my temperature much more frequently.

Oh the joys of cancer treatment.

It's not as bad as it looks

I bet some of you are wondering how bad these mouth sores really are. Please don't get grossed out, but I decided to post what I could easily get a pictures of, the inside of my bottom lip. That type of sore continues around the inside of both cheeks, underneath my tongue and on the roof of my mouth. As horrible as it looks, it's not too bad yet.
I can still pretty much manage the pain with the mouthwash. I have to avoid acidic/citrus foods, as they cause burning, but considering I'm down to soft foods only it's not that hard to do. I basically just avoid orange juice.

I made a pretty yummy (well what I could taste of it) smoothie for breakfast and was able to throw the ensure in to mask it's smell/texture. I think I'll try to keep that up for breakfast for a while. Lunch consisted of soup and ice cream and I plan to take a stab at mashed potatoes for dinner. I am just thankful I'm still managing to swallow well. I want to make it out of this thing without a feeding tube.

Less than 4 weeks to go.

I can do this. Sure I can. Hey, let's go!

A hairy subject

Yesterday, when taking my shower, I was shocked at the globs of hair that began to fall out of my head. The chemo was only supposed to slightly thin my hair and this was just ridiculous! As it turned out, it wasn't the chemo, but the radiation causing my hair loss. I tried to take a picture of the back of my head to show you guys what I'm talking about. As you can see, the scar line extends up pretty far, so in radiating it, they managed to get some of my hair, as well. I outlined the area that used to be full of hair. :\


Aside from the hair loss, the mouth sores continue to proliferate. I was up to 7 yesterday, but I stopped counting. It's hard to tell where one sore stops and the next begins. I'm sad to be down to a "soft foods only" diet already and being woken up by pains and dryness in my mouth (which THANKFULLY for the time being can be quickly remedied with a glass of water and a swish of magic mouthwash).

Chemo #2 is Monday. I'm dreading adding nausea and fatigue to the equation.

On the upside, I'm having a very relaxing weekend and Jake has been a great help. I think the drugs he's on make him nicer and more loving. haha.

Anyway, I haven't eaten lunch yet, so I should do that. I guess it's soup and ensure today. :\

ho ho ho, it's magic, you know...

I think I'm up to 5 mouth sores. At this rate I could be up to 50 by the end of treatment. Yikes!

I told the radiation technicians about it yesterday and they got me to see the RO who prescribed me magic mouthwash. It's magic because it completely numbs the inside of my mouth and makes the pain go away. Unfortunately, it seems the numbing sensation only lasts a limited amount of time on my tongue. The solution seems to work pretty well on the inside of my cheeks and lips, though, so that's good.

Food is getting pretty difficult to eat. The swelling inside my mouth plus it being numb all the time makes it really difficult to eat "normal" food. I still do pretty good with the ensure and pudding and yogurt and ice cream. I suppose that may end up being my diet for the next several weeks. mmmmmm. As long as we're talking about food, I'm still doing pretty good with my weight. I lost those initial 5 lbs after the first dose of chemo, but since then have only lost another pound. We'll have to see what happens after the 2nd dose of chemo on Monday and as my mouth sores continue to get worse.

Tomorrow I have off of work. I'm very happy to be able to sleep in tomorrow and have 3 days to lay around and do nothing (Actually 5 if you count laying around at the chemo center on Monday and my planned time off on Tuesday in case of nausea).

Hopefully this mouthwash makes some of my sores disappear. Now that would be magical.

A third the way done and the mouth sores have begun

Today marked treatment 11 of 33, a third the way through treatment.

Today also marked the first mouth sore.

I woke up this morning, pleasantly surprised that I could open my mouth a bit wider due to the stretching exercises I did last night. I was able to open my mouth enough to really see in there and as I lifted my tongue I noticed a sore underneath it. Great. As the day went on, I realized it hurts a bit to eat and it is starting to take even longer. I also noticed there was another sore on the inside of my bottom lip.

So far it doesn't hurt unless I eat something spicy, but I just begin to worry that if I'm already getting sores 1/3 the way in....what will treatment day 33 be like?

How low can you go?

Well this morning I had my weekly blood check. The nurse came back with the results and said, "Your levels are all fine, you can go!". I said, "Even my platelets? They were low last week." She responded with, "Well, they're a little low, but not horrible. I'll print you out the report." So I take the report with me when I leave and I'm looking over it as I walk to the car. Everything is low! My white blood cell count, my platelets, and lymphocytes were all below normal levels and my red blood cell was right on the fringe. How is that fine?! I guess there are different standards for people with chemo. I'm just wondering how low my counts have to get before they tell me to stop going to work or public places. I'm also worried about catching a cold. That would be a really horrible thing with my immune system so knocked down. I just have to remind myself to keep washing my hands.

I had treatment 10 of 33 today. I'm finally in the double digits. Woohoo. Things are still pretty good. It was clinic day, so I saw my RO. I told him how I couldn't open my mouth very far and he gave me a handful of tongue depressors. He said something about scar tissue building up and I should start doing exercises where I stretch my mouth open with stacks of tongue depressors as I sit and watch tv. This should be interesting....

Enough of this serious stuff...

I suppose you guys are getting sick of my super educational posts and just wondering how I'm doing. So.... despite having another 2 or 3 serious topics I'd like to discuss, I'll save those for another day.

So how am I doing? Pretty good actually. As I sit here, I feel normal and not too tired. I do have side effects from all the treatments and meds, but so far they've been quite manageable. Right now I have:
1. Runny nose/sniffles - side effect from the Salagen(pilocarpine) I'm taking to maintain salivary function.
2. Sore/bruised arms - side effect from the Ethyol(amofostine) shots I'm getting before each treatment to reduce my risk of mucositis.
3. Lack of jaw movement - side effect from ???? I just noticed this morning that I can't open my mouth very wide. If I try to open it as far as possible I can barely get two fingers in between my teeth. Even after the surgery I think I could do three.
4. Heightened sense of smell - side effect from chemo. This one is mainly just annoying, although helpful in determining if food is just starting to spoil.
5. Loss of taste - side effect from radiation. This is the worst one. It is the weirdest thing. Jake and I ordered pizza Friday night and I decided to make a garlic butter sauce to dip the pizza in. I put a bit of garlic powder in and tasted it. nothing. a bit more. nothing. After a while I tried to go off of smell, but put in a little more than I thought because my sense of smell is off too. I went to sit by Jake and he dipped his pizza in it and was like "How much garlic did you put in there?!" So, I guess even though I couldn't taste it, I WAY overdid it. I tried to make a cranberry jam/syrup to go with my pancakes. Same thing. I couldn't taste it but I had Jake sample it and he said something was just off with it. I love cooking so much. It's such a disappointment not being able to taste my creations or even cook effectively. With all the awesome recipes people sent us, I'm jealous of Jake.

Enough about me. There are probably a lot of you out there wondering what ever happened to Jake. Well, he's on two new meds and in the process of tapering himself of the steroids again (there was a period where he thought they might have actually been helping so he went back on them). The new meds seem to be helping with the back of leg pain, but they aren't doing a thing for his back...yet. He's on a pretty high dose of pain meds, but it's gotten to the point where he's taking them about as frequent as safely possible and he's still in pain most of the time. He usually gets .5-1 hours in between pills where he feels good and then it's back to being in pain. He tried 2 or 3 times last week to get ahold of the neurologist, but the office staff there is absolutely horrible and so Jake has yet to get an appt. setup. If he doesn't get ahold of the neurologist tomorrow he's going to try to schedule an appt. with a pain specialist and see if there's anything we can do there.

A series of serious posts #2

HPV and Oral Cancer Awareness

I'm beginning to realize how many people must read my blog and that I can use it as an awareness tool. Despite my cancer cells being HPV negative, I decided it would be appropriate to do an entire post on HPV and how that relates to Oral Cancer and Oral Cancer Awareness.

Did you know that 80% of Americans will acquire HPV at some point in there life? Of those 80%, some unknown group will develop one of the 2-9 strains that cause cancer. I'm sure you are all aware of HPV and the link to cervical cancer, but did you know that HPV can also cause cancer of the base of tongue, tonsils, and pharynx? Now some of you out there may be thinking, but I'm not sexually active and I would never have oral sex. Aside from lying to yourself (because honestly who is NEVER in their lifetime sexually active/has oral sex), you may not realize that you can also get it from kissing. Kissing. That's right. And since 80% of people have HPV, if you've ever made out with anyone, chances are one of the two of you had HPV. Now, was this HPV a cancer-causing kind? Probably not, but you never know....

So what can I do?
Good question. You could never have sex or heavily make out with anyone ever again. Or....
1. If you're under 27, go and get the HPV vaccine.
2. Tell your friends these statistics and raise awareness
3. MOST IMPORTANTLY, see your dentist once a year for an oral cancer screening. And if your dentist doesn't do oral cancer screenings, make him/her start or get a new one!

Radiation Therapy 101

Today was a good day. I am slightly fatigued right now, but not too bad.

In tonight's post I have decided to finally answer all your questions about the radiation side of my treatment. Feel free to post extra questions to the comments section and I'll do my best to try to answer them.

1. What exactly is radiation therapy?
Radiation therapy is the medical practice of using radiation to control cancer cells. In my most basic understanding, the radiation beams are directed at specific tissues and the beams break apart DNA of all cells. When the DNA is ripped apart in this manner, the cancer cells cannot successfully copy themselves and so they die. If you remember from my chemo post, the chemo drugs bind to dividing DNA and make it impossible for the DNA to split/copy itself. This is why combining the chemo with the radiation works so well. Normal cells also die, but are able to find new ways to make new cells. The cancer cells cannot.

2. But if your cancer has been removed (i.e. doesn't show up on any scans) what are they radiating?
Maybe this is obvious to some people, but this was the question I had for my doctors. Even with the most accurate PET/CT technology, when scans are taken, the machines only take pictures in 7mm increments. If the cancer cells fall between a scan, then they won't show up in the results. It takes over 50 million cancer cells in order to make a 7mm diameter tumor, but it only takes 1 cancer cell to knock me out of remission. Obviously we can't see where any of these potential cancer cells are, but we can take some good guesses. Even though I had clear margins, any of my original tumor sites (right tongue, left lymphnode) could have cancer cells surrounding the removed area. Think of like a wet tennis ball hitting the court. If you really examine it, does the water just make a perfect circle or are there little droplets that go to the sides and don't touch the main mark. That kinda how the tumors are. They do take quite a bit of extra around the tumor site, but they still might miss a cancer cell or two. Also, despite being at one of the best surgical centers, cancer cells can remain on surgical instruments and get caught along the scar lines in my neck. Remember it only takes 1 cell. They could also be somewhere in transit along my lymphnode drainage system from my tongue to my lymphnodes. These are all the areas they will be targeting.


3. What type of treatment are you getting? What is IMRT?
My treatment is taking place on a TomoTherapy HiArt® (highly integrated and adaptive radiotherapy) treatment system, one of only a handful in the country. TomoTherapy is a way to easily combine treatment plans, position, and radiation delivery all in one. It is the newest advancement in IMRT (intensity modulated radiation therapy) which is just what it sounds like...shaping the intensity of the radiation to deliver different amounts to different tissues, sparing specific areas. I am receiving 33 doses giving up to 66 grays to the main target areas as I talked about in question 2. That means up to 2 grays (or 200 rads) per treatment. I have treatment every Monday through Friday for 6.5 weeks. They have tailored my program specifically to avoid my right cheek salivary gland, my larynx, pharynx, and most of my jaw.


4. Are you radioactive? Do you have super powers?
No, the radiation does not make me radioactive. As soon as the machine is off, I'm safe to be around. Also, despite some of my coworkers claiming I must have superpowers for having such a strong sense of smell and being able to taste metal, I do NOT have any super powers.

5. How does it feel being radiated?
Aside from the awkward/claustrophobic feelings brought on by having my feet strapped together (so I don't accidentally cross them and misalign myself to the machine) and having my head fully locked into place by the mask, I don't "feel" anything. There are a bunch of clicking noises and as I've described in earlier posts, there is a 1-2 second smell/taste at the beginning of the radiation beams starting up. In total the process probably takes about 15 minutes from the CT scan, waiting for the scan to match itself to the original treatment plan, the technicians moving the table I'm on a few mm up/down & left/right based on the results, and then the radiation beams themselves.

A series of serious posts #1

Diet and Body Image

I've been sitting on the couch reading other blogs and whatnot for the past hour and realize I have a lot to say about diet, body image, and how that corresponds to head/neck cancer. This may be more a useful post to any other head/neck cancer patients out there, than a useful post to my family/friends.... but here it goes.

I have dealt with body image and being overweight for a LONG time. I crossed 100 lbs in 5th grade and just kept climbing. It took a lot of watching my diet and exercising right to finally cross back into the normal BMI range about 1.5 years ago. I was still slowly decreasing, about 2 lbs/month with a plan to get to the "perfect weight" (the middle of the normal BMI range) by 2010. I was all on track, until I had my recurrence.

When we decided to do radiation and chemo after surgery, I was told to bulk up. Radiation for head and neck cancer patients almost always results in a feeding tube. (I'd guess 95% of the time) The damage to the lining of your mouth and throat along with the inability to swallow and the loss of taste makes it nearly impossible to eat. I'm on a pill, a shot, a mouth swish, and the honey to try to prevent the sores/swallowing getting that bad, but the loss of taste is inevitable. I heard a story of a 5'3" woman dropping from 165 to 90lb during the 6 week treatment because she refused a feeding tube.

Yet as scary as all of that is, I had/have such psychological issues with putting on the weight to bulk up. With many ensure supplements, I managed to put on 8 lbs during the few weeks before treatment began. After my first round of chemo and all the nausea, I lost 6 of those lbs in two days. Since then, I've lost another 1. I am actually happy to be back where I was when I started....and I shouldn't be! I need to keep weight on! I weigh myself every other day and when my weight has gone down by only like a half pound, I'm happy, MORE happy than when the weight goes up. That should not be the case. I am still in the portion of my treatment where eating is "easy" and I should be using this to maintain or gain weight, but I just can't bring myself to do it. The pressure to be thin is so ingrained that the idea of losing 75 lbs in 6 weeks doesn't seem that horrible. Yes, I said it. I know how ridiculous that is. I know how horrible that is for your body. I know I will continue to force myself to drink ensure.... but until I cross that "perfect weight", I'm not going to feel good doing it.

lucky no. 7

Treatment 7 today and I don't seem to be experiencing as much post-therapy fatigue. It's been 2 hours since treatment and I'm just barely starting to get fatigued. Does this mean the radiation didn't work as well today? I hope not.

My tastebuds today seemed to be about the same, if not slightly better than yesterday. So that's good.

The bad news for today was the honey treatment. Those with sensitive stomachs stop reading now. So, I got to the parking garage at the center and pulled out the honey. The honey went in fine. I kept trying to swallow it, but it was just sticking everywhere in my mouth. I started to gag, so I tried to spit it out, but it was just everywhere. I finally got most of it out of my mouth but I felt like I was about to puke. I sat in the car for a few minutes trying to steady myself, but I didn't want to be too late to my appointment, so I went ahead and started walking. The trip from the parking garage to the cancer center involves walking the entire length of the University Hospital and for some reason today there were just swarms and swarms of people. I get about halfway and all of a sudden I can't hold it anymore and my mouth just fills with puke. There are trash cans about every 5 feet, but people everywhere. Eventually I just have to walk over to one with a man standing inches from it and spit the puke out. So embarrassing. :\ Then after all of that I'm late to my appointment by a couple minutes. Not a good start to treatment today.

Like I said though, I'm not feeling as fatigued and my taste buds are holding. Maybe puking right before treatment is a new way to help reduce side effects. Maybe I could participate in some weird case study. Ha!

another post on senses

6 down, 27 to go. I type this laying from the couch, the post-therapy fatigue fully hit in.

My sense of taste is leaving me. I ate a granola bar this morning and on the first bite looked down at my lap to see if I had missed my mouth. I couldn't tell that any food was there. I tasted nothing! Already! After only 5 treatments. :( I picked out a chocolate chip and focused on flavor. I could make out some sweetness. I did the same with a dried cherry. I could make out a bit of sour. I tried smelling the food first. It didn't help.

This continued through the rest of the day. I also started to notice faint hints of metallic tastes. My ensure tasted like really watery chocolate milk with nails in it. This is expected because of the chemo, which is made from metal.

The only good thing from all of this is that honey is becoming more tolerable. Last week I stupidly decided to try to take the honey while I was nauseated and I now associate eating honey with puking. Even the smell of it makes me gag. I had been trying to at least swish it in my mouth a bit before gagging and spitting it out. Today It wasn't that sweet, so I was able to swallow a bit before I caught a whiff of it and gagged from the smell. Tomorrow I'll try plugging my nose even while swallowing.

Well...it's time for dinner. Anyone up for rusty, almost chicken-flavored meat?

sensing radiation

So today I finally remembered to ask the radiation techs if it was normal to taste the radiation. They said that some people report that, but it really depends on what areas are being treated. I guess if the treatment is near people's eyes sometimes they'll see colors. If the treatment is near their tongue, sometimes they'll taste it. If it's near their nose, they'll smell it. How weird!

In my case every time the machine starts up for the first second or so I get a weird taste in my mouth. I can best describe it by telling you to imagine you had a cup of chlorinated pool water that you had tossed a rusty nail into, then you swished that water around in your mouth for a second. That's what it tastes like for me. ick.

Also speaking of senses, the chemo heightens senses. When I got my saline and heparin flushes after my bloodwork this morning (all my counts look good, btw) I could smell/taste it. yuck!

Hopefully the heightened taste just helps the tastebuds hold out longer. That'd be nice.

it's called fatigue

I just turned to Jake and said "This is weird. I'm so tired, but I don't feel like sleeping." Jake responded with, "It's called fatigue." oooooooooooo. So that's what fatigue feels like. Ha.

I had day 4 of radiation today. Now I'm fatigued. I drove myself to the place and back and even stopped off at the grocery store to pick up a couple of things. I felt like a normal person (although I did hope that the check-out person didn't notice the faint waffle-face I had). Then I got home, unpacked the groceries, and decided I felt like making guacamole. That's when the fatigue hit in. I started getting so worn down. By the time I was done chopping vegetables I had to stop and lay down. Who knew guacamole could do that to a person!

I looked back up the side effects from radiation. Sure enough, first on the list: fatigue. I thought that was only from the chemo. Great.

So, I guess this may be a good place to actually ask for help. I am a very organized person and make out my shopping list/meals every week. This week I planned for simple things Jake could make himself, just in case. It seems that Jake will be making dinner for a while, now, and I have only a handful of "easy meals." It's not that Jake can't cook, in fact, he's really good at it. He's just lazy. Ha! As long as there aren't too many steps or it doesn't dirty too many pans, he doesn't mind cooking. So....here is my plea to all you out there who keep asking what you can do from so far away. Send me easy meal recipes. Things that Jake can cook (that I can hopefully eat, as well). For Jake's sake it should involve few steps and easy cleanup. For my sake it shouldn't be too heavy, greasy, or spicy.

Alright... I suppose that's all for now. Thanks in advance for any suggestions!

Eating right and getting cancer...

I was just going through some old emails and papers and ran across two articles on foods that supposedly help prevent cancer and I decided it was worth blogging about.

The first article linked drinking a cup of coffee a day with preventing cancer. In a Japanese study it was shown that coffee helped lower the risk for oral cancers in people, even those with risky life behaviors (smoking and drinking). Well, I've been drinking my daily Joe for a long time...so so much for that one on me.

The second article I read was about how a diet high in fruits and vegetables helps protect against cancer. In a study of 33 common vegetables, the one leading the pact was brussel sprouts. Most people out there probably don't eat enough of this leafy green, but I was a weird kid, and I LOVED brussel sprouts and ate them all the time. Go figure!

I've read studies about fruits high in anti-oxidants and started eating berries every day for lunch after the first surgery, again obviously with no positive effects.

So, it just goes to show you that sometimes even eating all the right things and avoiding smoking and drinking can only get you so far. I can just be thankful for being so aware of myself to notice when things in my mouth and neck were not quite right. Sometimes even with doing all the right things, the best you can do is still just detect it early.

surviving "lethal" doses of radiation

So, I'm sitting here watching an old episode of mythbusters where they are radiating bugs, mainly cockroaches, to see if they could survive nuclear radiation. The have 4 groups: a control with zero radiation, a group exposed to 1000 rads, 10000 rads, and 100000 rads. In terms of grays, that would be 0, 10, 100, and 1000. Every time they talk about the 1000 rad (10 gray) group they say that is the "lethal" dose to humans.... Yet I'm getting up to 66 grays worth of radiation to areas of my neck over the next month or so! Granted this will be spread out over 33 treatments, but that is still a scary thought!

As I watch over half the 10 gray cockroaches die off over the month of mythbuster observation, I wonder how my 66 grays will do on my head and neck. I guess it just goes to show you how powerful the radiation will be at destroying cancer cells.

dealing with a case of the sniffles

Well, I seem to be doing better tiredness-wise today. Maybe Jake and I will actually get a chance to go out later today.... maybe to a movie or something. :)

My mom and sister left this morning :( It was nice spending time with them and also nice to have help cleaning the house. It's so nice having this entire weekend without needing to do a ton of chores. Thanks, mom! My mom will be back in a couple weeks to help drive me to the final weeks of treatment. Until then, I bet I can manage the appointments myself or with the help of Jake.

I'm battling a case of the sniffles right now, which is a bit annoying. I read the side effects from some of the anti-nausea meds the other day and one listed "nasal congestion and blurred vision", two symptoms I had started to develop. The vision came back, but the sniffles stayed. I hope they go away soon. When I wear that radiation mask, my mouth is forced closed and I can only breath out of my nose. With the sniffles, it makes it a bit trickier.

Well, I guess I better go find something fun to do. It's such a nice feeling not having to worry about doing all my chores today. :)