Here we go again

Do I have to post about cancer?

2011-02-25T17:24:00.000-07:00

Who knows if anyone is still reading this. I'm perfectly fine these days, so who wants to read about that. What I started as a way to easily get the word out about how I was doing during treatments became a way for me to express myself, calm myself down, and help me make it through a rough time. After all of that was over and things have been going well, it seems like the only time I post is to give a health-related update. I definitely have one of those to give today, but I'm wondering if that's all I have to give... Should I really be limiting this blog for health/cancer-related issues? It's called "here we go again". It's about my second battle with cancer. I regret not blogging more, but I just don't feel it appropriate at times. Another reason for this blog was to be something that other cancer patients could find on a Google search to give them a first hand account of the disease. I don't know how much I want to muddy the waters with other topics. I think I will continue on this trend of only posting about my disease, but just beware, that means the updates should theoretically get fewer and farther between.

Alright... so that being said, cancer sucks. A lot. It doesn't matter what age or what type. Cancer sucks. February 15th marked one year since the end of my radiation treatments. It also marked day one of radiation treatments for my Grandma. My Grandma is a 10+ year breast cancer survivor. We shared a special bond. We were both cancer survivors. A few weeks ago my Grandma tried to outdo me. She has been dealing with unexplained bleeding for over a year. Every time she would have a flair up, she would be sent to a urologist who would look at her and say she was fine. I know I had asked before how they knew it was a urologist and not a gyneocologist she needed to see, and the response was always something like "well, the blood is in her urine sample." Uh-huh... and???? *sigh* Well, a few weeks ago, she was bleeding so bad she had to be taken to the ER and which point the ER doc said "Well... she has a large tumor on her uterus. It's probably cancer." WTF??? How did no one think to look there for the past year? Over the next week or so doctors kept trying to do biopsies to confirm the diagnosis, but my Grandma kept bleeding too much. They decided to run a CT scan instead. Not only was there a large tumor on her uterus, but also smaller ones on her ovaries and lungs. At this point my Grandma had to make a choice. She's 87 and probably wouldn't survive a surgery, not even to get a biopsy. She ended up oping for low-level radiation for "presumed cancer". This radiation treatment is not even curative, it's just supposed to stop the bleeding. Logically, I get it. She's 87. She probably wouldn't survive surgery or chemo or high levels of radiation. Even if she did, it would ruin her quality of life for the next few years. The doctors just want to shrink it enough to stop the bleeding and the pain and give her the best possible outcome for the next few years. But still.... she's my Grandma. I'm upset they didn't find this earlier. I'm upset that they can't do more for her. I'm upset that there hasn't been enough advancements in cancer treatments to be able to cure her without killing her.

I'm thinking about you, Grandma. I hope that this radiation treatment does give you quality of life for many years to come. You have the strength to get through this. I know, because I inherited it from you.

Snowpocalyspe in Tucson?

2011-02-03T21:10:00.000-07:00

Well, up until this morning I was quite happy to be in Tucson. I was laughing at my northern friends' Snowpocalypse facebook updates, while enjoying the 60 deg.-ish temps here. I was laughing at the locals who were freaking out that it was only 36 when we left work yesterday.

I'm not laughing anymore. Tucson was not designed for below freezing temperatures. This morning all our pipes outside were frozen, so we had no water. Around 6:00 this morning I became convinced that a pipe must have burst somewhere in the walls of our house and so Jake called a plumber. Around 11 or so, I began to think that maybe I just needed to go take a heat gun to the pipes and that would fix our problem. Well, about the same time, the plumber showed up and charged us a couple hundred dollars to thaw our pipes with a blow torch. :/ One of our pipes did crack, but it was an outside pipe that is used for the hose hookup. The plumber did replace this, which made it worth him coming, I suppose. I have now wrapped all our outside pipes in towels and duct tape in anticipation of the chilly 22 deg low tonight. *sigh*

Well, the plumber ended up getting our water running again around noon... which just so happened to be about the time the gas went out! Apparently our gas company didn't have enough gas to cover all of its customers in such cold temperatures, and in running the lines so hard, the one that controls our subdivision broke and 14,000 people are without heat! They say they might not have it back up and running until Tuesday!!! I don't understand what should take that long. They have to apparently come to everyone's house individually and turn off the gas, then fix the problem, and then individually turn the gas back on. *sigh*

So... I've been bathing with water boiled on the stove. I'm wearing two pairs of socks and a hat in order to try to keep warm. I've tried every little trick I can think of to keep the house warm. I turned on all the lights in the house (I think I've read studies showing that that can increase the temperature in your house by a couple degrees) and I'm baking cookies just to have an excuse to have the oven on. So far our house temp is still at 68 deg. (although I think it's probably a few deg. colder in the living room, which is where Jake, the doggies, and I are all hanging out). Hopefully it doesn't get much colder over night. I don't want our doggies to freeze!

So it was my friend's birthday earlier this week...

2011-01-29T17:45:00.000-07:00

Ok... first things first... Yes, the biopsy showed that my sore a few weeks ago was benign. I am continuing to do well health-wise, aside from a little cold that I had for the past week. Jake isn't doing quite that well. His back pain seems to be resurfacing, although he's had a few appointments with the pain specialist, and it seems his pain has spread one facet joint above where it was before. He'll probably be having another nerve cauterization procedure done soon. Also, I decided to share my cold with him. How nice of me! Poor guy. :(

Anyway... I really don't have much to write about these days, but last weekend I made some pretty awesome cookies and I've been wanting to share pictures with everyone, so.... voila!

It was our good friend's birthday this past Monday. I've been trying to start the tradition of making people their favorite type of cookie on their birthday. Well, our friend had once mentioned his favorite type was sugar cookies, and since I also knew that he was quite into video games, I decided this was the only logical conclusion.

I am quite proud of the way the cookies turned out both looks and taste-wise, so I figured I'd share it with you all. Enjoy!

What a relief

2011-01-13T08:57:00.001-07:00

So, as suspected, my ENT took one look at my bump and said, "Let's do a biopsy." As he was getting things ready I asked if the blueish/grayish spot indicated anything. He said it could be an old stitch trying to work itself out.

Anyway, he did the biopsy and guess what came out? A knotted piece of stitch! From over 2 years ago! Crazy!

He's still going to send out the biopsy and call me with results, but we're pretty sure it's nothing.

You can't even imagine what relief I feel! I feel lighter & just elated. Also, I got to stop at Dunkin Donuts for breakfast, so I am just in fantastc spirits!

Maybe I spoke too soon...

2011-01-12T22:21:00.001-07:00

I realize it's been quite a while since I last posted. I'm very sorry about that. For starters it just seems that I'm always so busy with something or another, even if it's just housework. Secondly, since I started this blog as a way to communicate my health issues and I haven't had many of those, I just didn't have the motivation.

So... maybe one of these days I'll tell stories of this Christmas or New Years, but for now I'll just stick to the subject of health.

It would seem that I may have been a bit optimistic in my last post. I've been going through quite a rough patch this past week or so, although I really hope it just turns out to be nothing. Last Friday night, as I was brushing my teeth and getting ready for bed, I noticed a bump on the side of my tongue. I played it cool and abided by my 24 hour freak-out rule. Well, 24 hours it was still there.... and tonight, 5 days after the fact, it is STILL there. :/

I haven't been sleeping well lately and my thoughts are constantly preoccupied about this stupid thing. I feel like my coworkers have noticed something is up. I don't think I'm being quite my bubbly self. I also seem to be taking it out by freaking out on my husband. Poor guy.... I haven't really told anyone about it. I don't want to jinx myself or something. Who knows. Anyway... I already had an appointment with my ENT scheduled for tomorrow, so I just decided to wait this out for then. My guess/hope is that we'll end up doing a biopsy tomorrow and then wait the week for the results. It's this whole not knowing part that is just so horrible! At least if I knew it were back I could start planning and preparing myself for this. It's so nerve-racking not knowing.

The bump seems to have stayed the same size this entire week and I just had my PET scan less than a month ago and it was all clear and it just doesn't seem like cancer.... I can't explain it. I don't have that same feeling I had the last two times I had cancer show up. Even so, something about this is not settling. Bumps in my mouth do not normally take over a day or two to make a significant reduction in size. I guess I just have to wait and see what my ENT says tomorrow and then possibly wait for some biopsy results. Hopefully blogging about this and knowing I see my doctor tomorrow will help me sleep a little bit easier tonight. :/

Good night!

Given the all clear!

2010-12-21T22:24:00.000-07:00

I'm writing up a very quick post tonight, but I just HAD to share that I went to see my RO to get the results of my PET/CT this afternoon and was given the best Christmas gift ever... a negative scan, with my body being completely unremarkable! Two clear PET scans in a row dramatically decreases my risk of a recurrence, so I am very, very happy.

That's all the time I have to post for now, but I figured whoever still reads this is entitled to hear about my good news. :)

Cookies, cookies everywhere and not a bite to eat!

2010-12-16T21:57:00.000-07:00

As the holidays approach, I like to bake... and bake... and bake. Now, I don't like eating a ton of cookies or anything, I just love baking. I do enjoy eating a couple of my creations, but for the main part I like bringing them into work or giving them away. Today I brought in 4 packed containers with peanut brittle, peppermint bark, ginger cookies, and nut cups. I put half of it out on a tray in a break room at work and it was gone in less than 10 minutes! I brought the other half to an afternoon meeting and pretty much got rid of the rest.

Anyway... that's not really the point of mentioning the cookies. The point is that I haven't even had a chance to really sample all I made and I am REALLY in the mood for some cookies right now, but I'm scheduled for my 6 month PET/CT scan tomorrow and I'm not supposed to eat a lot of sugars, carbs, or caffeine 24 hrs prior to my scan. I haven't eaten any cookies all day even though I've been giving them out to folks. It's torturous! I actually only remembered the rule about not eating sugar. It wasn't until a little bit ago when I went on-line to look it up that I saw the carbs and caffeine bit. I actually had a coke zero and rice at lunch and a small serving of potatoes with dinner. I hope that doesn't interfere with my test. I guess the reason they tell you to restrict your diet the day before is to starve your cancer cells of sugar. Cancer cells uptake and metabolize glucose much faster than regular cells, which is why the PET scan works. When I go in for a scan, the first step is to get injected with the radioactive glucose. I then sit in a room for 45 minutes or so. If I were to have any cancer cells, within that 45 minutes, those cells would uptake and start metabolizing that glucose. Regular cells will take much longer to do that. So, if there were any cancer cells, when the scan takes place, they would light up on the screen. If the cancer cells are starved of glucose for 24 hours, then they're even more likely to uptake and metabolize the radioactive glucose when it is injected. If they're full of glucose already, then they probably won't.

So anyway.... I guess I'll sit here drinking water and just look forward to the fact that the place where I'm having my PET scan is right next to a Dunkin' Donuts. haha

Happy Thanksgiving

2010-11-25T18:08:00.000-07:00

I can't believe it's been a month since my last blog post. My, oh, my... where does the time go.

I hope all of you are having a fabulous turkey day! Jake and I recently evaluated what made sense as far as traveling to see our families meant and decided that it made a lot more sense to travel for Christmas this year than it did to travel for the short Thanksgiving holiday. Hopefully we can rotate every year since Thanksgiving is the big holiday for Jake's family and Christmas is the big holiday for my family. So... that being said, Jake and I had a nice quiet Thanksgiving here at home. I made a fantastic meal to which Jake said sarcastically "Do you think you made enough?".

I was pleasantly surprised that my roast chicken, stuffing, green bean casserole, sweet potato latkes, cranberry sauce, and rolls all turned out great! Usually I end up messing up at least one or two little things... maybe I'll overcook or undercook something or a new recipe (like the roasted chicken or latkes) just won't turn out right. In the middle of dinner I turned to Jake and said "Wow. Everything turned out so good!" to which he replied, "Yes it did. I love you." Ahhh.... so the saying must be true. The quickest way to a man's heart IS through his stomach.

So now we sit, letting our stomachs digest our feast... I'm blogging. Jake's playing video games. Soon we get dessert, though, homemade pumpkin cheesecake! The cheesecake turned out pretty great this year too. We had a Thanksgiving potluck at work last Friday which was awesome! There was a huge turkey and ham and a variety of stuffing, potatoes, vegetables, and desserts. I made 1 1/3 recipes of my cheesecake this year, leaving the mini one at home for Jake and I for today. The whole one I took into work for our potluck. It competed against 3 pumpkin pies, 1 apple pie, 1 french silk pie, 1 pound cake, and pumpkin bread for 40-50 people. My dessert was the only one that disappeared completely. The rest had a slice or 2 gone, but my plate was clean! I'm so glad I made the extra to keep for Jake and I.

Anyway...
I suppose the reason many of you visit my blog is because of my health, so I suppose I should touch briefly on that instead of going on and on about all this food! Well, things are going well. I can't believe that almost a year ago I couldn't hardly even eat anything let alone taste it and appreciate it. I'm just so thankful this year to be relatively healthy again!

I wish you all a very happy Thanksgiving! May you all take this time of year to reflect on all the things in your life for which you are thankful too. :)

What's the frequency, Kenneth?

2010-10-25T22:14:00.001-07:00

So many of you are probably thinking, what ever happened with Jake? Wasn't he supposed to have that procedure done on his back?

Yes... he was and I suppose it's time I tell you how that went.

So a little over a week ago on 10/15, Jake went to see the pain specialist to have the official radio frequency lesioning procedure done to the facet joint nerves in his back. Essentially Jake's problem was that he had developed facet joint spondylosis, an arthritic-like degradation of the joints between his vertebrae, which was causing referred pain in his latissimi dorsi muscles. Through verification with the anesthetic shots, the pain doctor was able to pinpoint the affected nerves to the 2 pairs radiating off of the 8th and 9th vertebrae.

The procedure began with a bit of local anesthetic, then using an x-ray, they placed needles in the 2 sets of nerves and applied electrical current to have Jake verify the placement of the needles. Once the needles location was verified, the radiofrequency generator passed heat through the needles. This essentially "cut" the nerves.

For the rest of that weekend Jake was pretty sore. This "easy, non-invasive" procedure was not very pleasant. That being said, by about the following Monday whenever I would ask him to rate his pain he would either say "1" or "Shut up. I feel fine." . . . which, in Jake terms, means pretty great. Since then, it seems he continues to be doing much better. His chair at work seems to be helping with the bursitis quite a bit, as well. He's also cut back on pain meds. We will continue to work on making him better all around and hopefully continue to cut back on medications.

Jake is still finding plenty to complain about, but he is definitely doing much better. I have high hopes for the future.

Well... I suppose I should get going to bed. Good night everyone!

"On the plains of old Sedona, Arizona... among the trees"

2010-10-17T11:29:00.002-07:00

Brownie points if you recognized the obscure Pixies reference in the title...

I realize it's been a while since I updated my blog. I would have written last weekend, but Jake and I were out of town. It was our 2nd anniversary and we decided to celebrate by taking a day off of work and traveling up to Sedona, AZ.

It was quite enjoyable. We took a train tour of the Verde Canyon, went out for a nice dinner, and then took a hot air balloon ride at sunrise the following morning. I got some pretty awesome pictures. The views were spectacular! I would definitely recommend hot air ballooning at least once in your life. I don't really know if I'd do it again. I think it was maybe a bit pricey for what it was.

I guess that's about all I have to say regarding our Sedona Anniversary get-away. Thanks to all of you who sent "Happy Anniversary" wishes and cards. I hope to send you all personal emails when I get a chance. There just aren't enough hours in the day! And with that.... I hope you enjoy some of the pictures I took...

The future of cancer research

2010-10-03T22:25:00.002-07:00

So it seems I finally have a chance to blog about a topic I've been wanting to write about for a few weeks now... the latest advancements in cancer research.

Maybe a few weeks ago you were lucky enough to catch the Stand Up 2 Cancer program on TV. I did not get to watch the program myself, as Jake had control of the TV content (like always); however, I did get a chance to hear a pretty great interview with Laura Ziskin, co-founder of Stand Up 2 Cancer, on the Stupid Cancer Show podcast that I listen to. I was very happy to hear about the great things that the organization was doing and plans to do. Stand Up 2 Cancer research focuses on translational studies, especially those in the lines of genetics. Instead of funding studies that cigarettes are bad for you or that you should or shouldn't drink red wine or if you should get your first mammogram at 35 or 40, they're funding research that might actually CURE people. They force "dream teams" to work together, teams comprised of young cutting-edge scientists, actual clinicians, pharmaceutical companies, etc. and invest money in research that may not always be as successful as "typical" research, but whose payoff would be far far greater. What is extra great about Stand Up 2 Cancer Research is that it is not specific to one age group or cancer type. The old way of cancer research was disease-specific, which researchers are finding is no longer the best way of doing things. The HER 2 gene found in pediatric brain cancer patients helped scientists develop the drug Herceptin for a subset of breast cancer patients, a drug which actually stops cancer from spreading. That same gene has recently been found in some young male prostate cancer patients, as well. Cancer is no longer age, body part, or type specific and Stand Up 2 Cancer is fighting for the cure in an actually meaningful way. I was so pleased to hear they ended up raising 140 million dollars during their show on TV a few weeks ago!

All of this came during the same week as my checkup with my radiation oncologist. My RO knows of my affinity to science and shared with me some details from the latest research he's been reviewing. He says that the next major breakthrough that will happen in cancer treatment is the ability to find specific genetic markers that would show a predisposition for mutations and be able to give a cancer survivor a drug to suppress that mutation. One day there should be a drug I will take to ensure that I would never have another recurrence. How cool is that!

Hopefully, with support of organizations like Stand Up 2 Cancer, this drug technology is right around the corner. Taking a drug to prevent some of the paranoia and a recurrence would be amazing! That scare last week was just a horrible reminder of how frightening living as a cancer survivor can be. It brought back those feelings of "not-knowing" that I had prior to both my biopsies. I'm happy to report that my ENT did a thorough feeling and scoping of my nose, sinuses, throat, and tongue and found nothing abnormal or infected. My left nasal passage was a little tight and so since I had been having sinus pressure for over a week, he went ahead and prescribed a steroid pack. It seems to be helping, although I seem to be extra itchy and nauseated. At least my sinuses don't hurt any more.

Anyway... exciting things are happening in the cancer research world and I just thought I'd share. Also, in case you're looking at your calendar and thinking that it's getting near the end of the year and you better get going on your tax-deductible gifts to charity this year, you may want to look into Stand Up 2 Cancer this year. Other honorable places to donate would be the American Association for Cancer Research, who actually share research money with Stand Up 2 Cancer, and the I'm Too Young for This Cancer Society, which provides age-appropriate support to young adults affected by cancer.

Happy Cancerversary to me!

2010-09-29T21:48:00.000-07:00

Two years ago ago today I visited my ENT to hear those words I would never forget, "Could your fiance wait in the waiting room? The doctor would like to talk to you alone. Then we can bring him back."

It was then I knew the results that my ENT confirmed a few moments later. The biopsy was positive for cancer. Since then, it has been two years on a crazy roller coaster of tests and treatments and scans and scares. It has also been two years of great maturing and hopefully some positive reevaluation of life's priorities.

So what did I do to celebrate today? The same thing as the past 2 years...kept living.

And I'm looking forward to many years to come. :)

Oh... and by the way, that little sore on my tongue... it's completely disappeared now, although the sinus infection symptoms persist.

Enough about me

2010-09-27T23:00:00.000-07:00

It seems like the sore on my tongue is getting smaller. I made Jake check it out last night and then again tonight, and he thinks it looks smaller too. I bumped up my next ENT visit to this upcoming Thursday, regardless.

But enough about me...
You're all probably thinking, "That's great that you're getting better, but what ever happened with Jake?"

Excellent question and how horrible of me to not have mentioned it previously! So, after Jake's appointment two Fridays ago, I became convinced that the doctor was spot on with his diagnosis. During the initial hours following the injections, the anesthetic brought Jake's pain down from a 5 to a 1 and stayed there without pain meds! Of course, once that wore off, his pain returned to normal. Regardless, this proves that a doctor was targeting the right spots for once! This Friday we are going back to do a 2nd diagnostic test on Jake's back to rule out the Placebo effect and then discuss future options with the bursitis treatment. What was supposed to happen was as the anesthetic effect wore off, the steroids were supposed to kick in and get rid of the inflammation in the busa. This was then suppose to slowly reduce the pain. It hasn't. It is possible that Jake is just being extra resilient to the steroids and/or his bursa are still inflamed because he has to sit on them all day. Regardless, I trust that this new doctor will be able to offer us a plan on Friday.

Also, Jake's special ergonomic, "zero-gravity" chair FINALLY arrived at work. It's a tad embarrassing for Jake having to sit in his completely visible cube with this monstrous moving desk with monitor frame and motorized reclining chair. Every time he has to get out of his cube, he has to use buttons to move the desk and chair up, which of course makes noises that the folks around him can hear. Regardless, the lack of pressure on his bursa by being able to work in a reclined position should help towards reducing inflammation and giving them a better chance to rest/heal.

Well, it's getting late, so I better get going to bed. Good night!

Its probably nothing...

2010-09-27T07:38:00.001-07:00

A quick update as I walk into work...

The tongue spot seems to be getting less round and more tongue-colored. Upon closer inspection there seems to be a lesion of sorts that is healing. Maybe I just cut my tongue on something I ate.

I think I'll try to bump up my next ENT appt. regardless, as I'm still showing sinus infection symptoms.

Wasn't that fun watching me go through a cancer-scare! ... just another great perk of living as a cancer survivor.

The fear that comes with surviving

2010-09-26T23:46:00.001-07:00

I can't sleep.

When I went to brush my teeth tonight it seemed a bit sore on the left side of my tongue, so I did an extra-thorough investigation of the insides of my mouth only to find this:

(note...this picture was taken with my phone so it might be hard to see)

Basically you can see a small broken blood vessel and slightly below and in front of it is a small white patch, very reminiscent of my first cancer sighting two years ago... but much smaller.

I made a promise with myself that I'd always give myself 24 hours before freaking out, but I'm having a hard time living up to the deal tonight. I've also been battling what I've assumed was a sinus infection for almost a week, which I read can be caused by tumors in the face. So those two facts together just make me more afraid. Needless to say, I'm paranoid and can't sleep.

It's probably nothing, right? My lunch today was a bit too hot when I took the first bite. Maybe I just burned myself. Maybe it's just an infection related to this sinus issue I've been dealing with. Maybe I just bit my tongue. There are many things it could be that aren't cancer, but I just want you all to see that the cancer journey doesn't end when the treatment does. It continues as a lifetime of fear and paranoia. *sigh*

Well, believe it or not, typing this all out gave me a bit of comfort, enough to probably get some sleep. I guess I'll check out my tongue in the morning and if the spot is still there, I'll be calling my doctor. :/

I'll keep you all posted, but for now, good night.

Birthday bash, then blah...

2010-09-16T21:52:00.001-07:00

Well... I guess the American Cancer Society can add one more number to their more birthdays campaign.

Note the binary candles/holes on my cake:
11010 (which converts to 26 in base ten)... we're such dorks. :)

I had a fantastic birthday this year...or at least a fantastic time leading up to it. Jake and I went out to eat on Saturday and had a fabulous meal (although we both ate far too much I'm sure). The star chef even sent us home with a birthday card and a tiny box of chocolates. awwww. Then on Sunday we had friends over for a Tapas and wine party which was just fantastic. Maybe they all found it a bit weird that I had fun cooking food all day, but I did! We ended up with 4 different crostinis, stuffed mushrooms, prosciutto-wrapped asparagus, arancini, patatas bravas, and lemon garlic chicken bites. We also had 3-4 different wines plus a homemade white sangria, which I found to be quite awesome and super easy to make... so I'll share the recipe:
Mix 1 bottle Sauvignon Blanc, 3 oranges (sliced), 1 lemon (sliced), 1 lime (sliced), 6 large strawberries (sliced), and 2/3 cup sugar and let set overnight. When ready to serve, mix in 1/2 Liter Ginger Ale.
We topped off the night with ice cream cake (above) and a viewing of This Is Spinal Tap in honor of the year 1984, the year of my birth. All-in-all it was a great party!

Then on Monday, my actually birthday, I was bombarded with facebook birthday wishes and emails and cards and phonecalls. I felt so loved. I brought in homemade red velvet cupcakes (which were awesome) to my coworkers, who again found it odd that I would bake for my own birthday. I love cooking/baking... what can I say! One coworker got a card signed by a bunch of the folks in the factory and made me a mini loaf of delicious zucchini bread.

And that unfortunately is where the good part of the week ends and the "blah" part starts....

Early last week I tried to get a refill on my narcolepsy medication (that's right... in addition to surviving cancer, I also have to deal with mild narcolepsy), but found out that I had reached my two refill limit at Walgreens and, per my current prescription plan, had to request a 90-day supply from CVS. So.... to cut a long story short, I ended up running out of pills a few days ago because CVS apparently doesn't know how to read a fax number or call people as a confirmation or give any type of status to their customers.... but my sleep doctor finally got a fax with the request yesterday (after his office was closed for the day, mind you) and faxed it back early today. So... thankfully I was able to take a pill this afternoon so I'm actually awake and blogging. It was getting so bad without my narcolepsy meds that I couldn't make it much past 8pm without falling asleep on the couch and I stopped making it into work on time. For my birthday Jake bought me an adapter to use our camera with our telescope so that we could take pictures of the moon and planets and whatnot. On Tuesday he ended up going outside to use it himself, then came to our bedroom around 10-something to wake me up and show me the cool pictures he took. I just started crying... I was so upset that I couldn't stay awake and that he was getting to use my gift.

Anyway... I have my pills now. Jake is going in for his injections tomorrow. I have all of this weekend to try out my birthday gift. Things are looking up. :)

So maybe my husband finally has a diagnosis...

2010-09-09T22:38:00.000-07:00

So today I accompanied Jake to a doctor's appointment and, for the first time in years, I felt like we had a real answer when we left. I was so pleased with the appointment, I almost forgot about the fact that we had to wait almost two hours before actually seeing the doctor. :\

First of all, let me say that I found this doctor. I did the research on pain centers in Tucson. I made phone calls to see which ones would accept Jake as a patient. I bothered Jake's other doctors until someone wrote us a referral. That being said, we ended up with a doctor with a pretty great background. Voted one of Tucson's best doctors in 2008, he has a Ph.D. in microbiology/immunology, has his M.D. in neurology, did his fellowship in anesthesiology interventional pain management, and currently teaches classes at the U of A's college of pharmacy. So.... he was able to have a good perspective on the potential for Jake's condition being autoimmune related (as proposed by our neurologist), while also knowing a lot about neurological spinal disorders and the proper way to administer pain meds if the need arises.

So... after asking Jake just a couple of questions, reading his chart that says no one can find anything wrong, and then actually touching Jake to figure out where the pain is (I can't remember the last time I saw a doctor do that), he had it all figured out. So... what's causing Jake's pain, then, you ask? Well, apparently Jake has bursitis in his legs/butt and thoracic spondylosis in his back and the two are actually unrelated. Obviously, when the doctor came back with a diagnosis so quickly, we had questions.... but this doctor had good answers for everything we asked. But in 2007 a doctor already tried to treat Jake for bursitis.... Since the doctor did not use an xray to guide the lidocaine injection, his chances of actually hitting the correct area were only about 33%. Why has nothing ever shown up on an xray/MRI? Spondylosis and bursitis won't necessarily show up on scans. What about Jake's high Hashimoto's antibodies? If Jake really had pain due to antibodies, it should not be showing up so specifically. Usually it presents itself more diffusely, a generally achy feeling.... not specific spots like Jake describes. Also, while IVIG might reduce the antibodies it should not effect the pain, other than maybe mess with the autoimmune system in a way that might cause the body to reduce its own pain response slightly.... but the risks associated with a plasma transfer from so many donors is not worth the slight benefit that it may or may not provide.

We also found out that Jake's slower social development could also be a contributing factor to his pain. Children who have developmental disorders (even just social ones) may also have developmental issues with pain response and it is very possible that because of this, Jake has an increased sensitivity to pain as compared to your "normal" young adult male. Which, to me, makes a lot sense.

Alright...we have a diagnosis... now what? Well, in about a week, we will return to this pain center and Jake will get an xray-guided lidocaine injection into the bursa between his legs and butt. He will also get a facet joint injection of temporary anesthetic at the nerves near his back pain. He will then rate his pain to see if it goes away. If the pain disappears completely, after one more diagnostic test to rule out the placebo effect, Jake will get those same nerves cauterized and his pain should be greatly diminished if not removed altogether (at least until the nerves repair themselves 6-12 months later). If Jake can go in for injections every few months and not have to take dozens of medications each with dozens of side effects and not be in pain.... I think we both would be very very happy.

Anyway... I'm very excited that something good might finally be happening. It's about time! So... *knock on wood* things are looking up!

A book recommendation

2010-09-08T20:52:00.000-07:00

I finally had a chance to look up more info on the release of Grant Achatz's memoir. Thanks Debbie for reminding me. It turns out that the book is coming out March 2011, but you can preorder it already through Amazon for only $18.15. ...and hey... if you go to Amazon through the Oral Cancer Foundation link, then a percentage of the sale should go to the Oral Cancer Foundation. :)

No update on the movie based upon this book (there were rumors in early 2009 that they would turn the memoir into a movie staring Toby Maguire).... but if you'd like a movie recommendation, as well... I have recently heard about Live with It, a film due to come to theaters soon based on a true story of a 25-year-old friend of Seth Rogen's who had cancer. The little bit of buzz I've heard about it sounds promising... maybe they'll actually have an acurate portrayal of what it's like to be a young adult with cancer.

Alright... done with my media recommendations. Enjoy!

I can't believe you're still out there

2010-09-06T10:13:00.002-07:00

So I posted about a week ago to see if anyone out there was still checking in on this thing.... and much to my surprise, you were! My life has gotten boring. Why would anyone want to read about it? haha I guess if you all are interested in reading about my happily boring life, then here it goes...

Work has been hectic and stressful, like always, although a few of my coworkers/friends and I were recently recognized for all the hard work/long hours we had been putting in lately.... so I should be expecting a nice little bonus in my next paycheck. :)

Friday night (pizza night at our household) was pretty awesome as my mother-in-law recently visited and brought us a frozen Giordano's pizza from Chi-town. :)

The rest of this Labor Day weekend has been spent either relaxing or doing yard work. I have lofty plans for our backyard, "the desert jungle". Yesterday was spent uprooting a dead bush. Today I plan to go out shopping for some rubber pavers and discussing what would be the best type of grass to plant in Tucson, especially if you have dogs who like to roll around and dig in it. I really wanted to get the bulk of the yardwork done this weekend since we plan on having guests over next weekend, but it seems like I could spend hours outside and hardly make a dent. Hopefully today is more fruitful.

So... why are we having guests over next weekend, you ask? Well... to celebrate my birthday! My birthdays over the past few years have not been that great.... from my dad dying, to a horrible breakup with Jake, to my first biopsy, to picking out my own present/cake from my husband who chose to sulk and complain the whole day. So.... needless to say, I didn't have that great of expectations for my birthday this year, but... Jake (with a little bit of persuading on my end) has begun to organize a get-together with a few of my friends for this upcoming weekend.... So I've started to get excited. I don't really know what we're going to do yet. There will definitely be good food and good music, and then either video games or a movie or something. I haven't quite decided yet. I think what I'd really like to do is have a Tapas & wine-tasting dinner.... but it all depends on how much I can prep ahead of time or feel comfortable having my guest help in preparing. We'll see. But yeah... I'm getting excited with the prospects of a "happy birthday". :)

Anyway... I guess that's all for today. I am going to try hard to keep updating a least once a week or so now that I know that there are still people out there reading this. Thanks. :)

2 years ago...

2010-08-30T22:36:00.000-07:00

2 years ago today began Labor Day weekend 2008 and a trip to the Grand Canyon with my fiance and our doggies... and what I thought was an annoying canker sore that made dining that weekend somewhat annoying. Who would have thought that that annoying canker sore was actually cancer and the start of my epic story.

It has now been over 6 months since the end of all my treatments. I have had nothing but good reports and scans. Aside from the annoying speech and saliva issues, I feel completely back to normal.

And maybe that's why I haven't posted to my blog in months....

Or maybe it's because I was just so upset when outsiders began to criticize me about the content of my blog...

Well, hopefully enough time has passed and maybe the only people still checking up on this blog are close friends or other cancer survivors or those who won't get offended by what I write.

So what's been going on in recent months? Well, as I said, things have remained the same for me, if not improved. Jake and I took a trip to Vegas back in July for a critical thinking/skepticism conference and a little vacation for ourselves.

And now, for the bad news of the blog.... even though my condition seems to be stable or improving, Jake's condition seems to be declining. In addition to increased pain, more doctors who can't find anything wrong, and more troubles dealing with the medical system then you could possibly imagine, it seems that his Hashimoto's antibody levels (which were already at 10 times the normal level) have increased tenfold! Since this appears to be the only abnormal test result, our neurologist is suggesting an antibody infusion (IVIG). This seems like the next logical step, although maybe not a pleasant one. I feel so bad for my husband and wish there was something I could do to get him happier and healthier. *sigh*

I look back at the roller coaster of the past 2 years in my life and look forward to a positive ending to my husband's medical drama, as well.

It's been a while... so to all still listening out there. Thanks.

n. A type of online diary made availabe to other people on the internet.

2010-06-21T20:48:00.002-07:00

I guess when I started this whole blogging thing it was more a way for me to communicate details of doctor's appointments and progress to family and friends so that I didn't find myself repeating the same things over and over again. I also used it to just be silly about things. As time went on, I began to really utilize my blog as an outlet for my feelings, from my fears and apprehensions to my happiness. I began my series of serious posts and loved the fact that I had an outlet to express myself frankly, without any reservations. My blog really became like a diary to me. By sharing it with you all, you became privy to some of my innermost feelings and some pretty personal details to my life. For those of you who have been with me from the start of this blog, I'm sure it seemed like a natural progression and you just found yourself becoming closer to me as time went on.

I am saddened to find that some of my information has gotten too personal. Apparently not everyone appreciates my openness about the on-goings of my life. Some of you may have noticed my blog was down last night. I did that so that I would have time to figure out how I wanted to handle the situation. This is my blog and if I can't post freely, what good is it? On the other hand, if the details involve other people and they do not want that information shared, I should respect that.

I went ahead and removed some details from my previous post as requested and I will try to be more careful about posting details about other people in the future. I'd like to post about this past weekend, but that may have to wait until tomorrow now that I have to spend extra time self-editing. *sigh*

As always, thanks for listening. <3

Good health and great friends

2010-06-11T10:26:00.002-07:00

So it's been a couple weeks since my last posts. Things continue to go well and provided my health continues to stabilize, I feel these posts will get even further and further apart. It's been sad drifting away from blogging, but I just don't feel like I NEED it anymore... and that is actually a pretty great feeling.

As an update to last time, my car was fixed by the dealership for about 20% of the cost. Their diagnosis pointed to Midas having caused the AC issue, but when I confronted Midas about it they said they didn't touch/change anything. They claimed that all they did was diagnose a problem I already had. Needless to say, I am never going back to that Midas.

In cancer-related news, I saw my RO last week. He told me I'm going to make him famous. I was his first patient that he tried greatly reducing the radiation to a salivary gland. Normally the radiation dose is dropped to 60 grays or so in that area, but in my case he dropped it all the way to 40 grays. When he got the results of my PET/CT scan he expected that my salivary gland would have shrunken only slightly, instead of its normal amount.... Instead, he was surprised to find that my gland hadn't changed in size at all! It was completely spared! This is sort of a breakthrough in the oral cancer treatment world and so he submitted a paper with these effects... He said if it gets accepted and makes him famous, he'll give me a copy. ha! Previous studies have shown that when people are limited to one fully functioning salivary gland (like me) over time that salivary gland will learn to work overtime and can produce up to three times as much saliva. I am looking forward to that... right now I wake up every morning with an extremely dry, swollen mouth. I started taking Salagen (Pilocarpine) again to help, so hopefully things will get at least a little better in the meantime.

So, as I began sharing my good news with my coworkers/friends they all would say "Congratulations! We should go celebrate." I thought this was a bit much...but I agreed and last weekend Jake and I went out with 4 friends to a GameWorks-like arcade, go-kart, putt putt golf, laser tag, etc. place. We were probably the oldest people without kids there, but it was actually a lot of fun. I got to play skeeball (my favorite) and we raced each other in go-karts, which Jake had a really great time doing.... maybe too much. I was riding around the track and then this jerk came flying up beside me trying to pass where there was barely any room... and as the guy passes I notice it's my husband. haha We all then went out for dinner and drinks. I had a great time. We've lived in Tucson for about two years now and while I've made friends, I haven't spent a lot of time with folks outside of work. Within the past couple of weeks I feel like I'm finally to the point of regularly hanging out with some great people on the weekends (aside from my husband obviously) and that makes me very happy.

I'm especially enjoying the company of these new friends because Jake really likes them and for Jake that is hard. He's never rude, but Jake has a hard time being social and is pretty particular about the types of people that he can hang out with before getting annoyed. This brings me to some other recent news... ***EDIT: Content removed by request.***

...things continue to decline [for Jake] physically. He's still in pain most of the time and his dependence on pain killers has made it so that as he tries to wean himself off the meds, he feels sick, tired, and just overall icky. The pain management doc he saw seemed to be of absolutely no help and there still isn't a reasonable diagnosis for his problem.

Anyway, I'm sorry for the rambling... I'm just happy for my good health and good friends. I'm excited by the prospects of Jake being treated for *** and hopeful that someone soon can figure out what is going on with his pain problems. Thanks for listening!

Here's to being unremarkable!

2010-05-27T20:34:00.000-07:00

I saw my MO and got back the results of my PET/CT today. "There has been complete interval resolution of the prior metabolic focus in the left jugulodigastric region. The soft tissues and nodal regions of the head and neck are currently unremarkable with no abnormal metabolic foci appreciated." In layman's terms, the cancerous spots from before are completely gone and there are no signs of any more cancerous areas in my entire head and neck. Horay!

Unfortunately, every coin has two sides and I have bad news to report, as well (not cancer-related). It all started last weekend when my good buddy Daniel was visiting. Jake, Daniel, and I were driving to the top of a mountain just outside of Tucson to see the Kitt Peak National Observatory. On our way there we were coasting to a stop at an upcoming red light. It turned green, we pushed the gas pedal, but nothing happened! We pulled over, turned off and restarted the car, and everything was fine aside from the check engine light that was on. I was leery to drive up a mountain with the gas pedal stopping, so we turned around and took my car to Midas (only because that's where I had work done most recently - rotating/balancing my tires). They took a look at it and said it had something to do with my Throttle Position Sensor, but they wouldn't be able to have enough time to do the extensive diagnostic work or get replacement parts until Monday. So, I took my car home and brought it back Tuesday morning. They suggested that I also get my AC recharged as supposedly everyone in Tucson does this for the upcoming summer months. I don't know what I was thinking considering I didn't have any issues with my AC, but I told them to go ahead and do that as well. Anyway... 8.5 hours later they call me back to say they just finished all the diagnosis and that it was the actual throttle position sensor and they would have to order the part (which would take 3 days to get) and that it would cost $1300+ to fix. What?! THEN they said that while they were doing the AC recharge they found that my expansion valve and condenser were both so clogged that they would have to be replaced and that currently my AC was continually cycling between 100psi and 300psi and if I didn't have this fixed ASAP my condenser would probably go out. What?! To fix the AC issue would cost me over $1100. What, what, what???!!!! I wasn't even having any problems with my AC prior to going to see them. This didn't make any sense. Also, the total cost for the repairs just seemed ridiculous. I spoke to a coworker who had a friend who worked for the Nissan dealership. That guy said that the AC thing seemed fishy and that even without knowing all the details about the throttle position sensor issue, they could fix the entire throttle position panel for $900. So.... I went to pick up my car Tuesday afternoon with the intention of taking to the Nissan dealership this weekend. Fast forward to Wednesday (yesterday) when I was driving home from work (it was ~90 degress outside) and my AC started blowing hot air. When I got home I popped open my hood and noticed that the spare coolant tank was completely empty. Did Midas forget to fill it???? I got some antifreeze and filled that up and called it a night. This morning I tried the AC again and it worked all the way to work. I assumed it must have been the coolant and was very pleased with myself. Then, when I left work during the hottest part of the day for my doctor appointment (It was 102!) my AC decided to start blowing hot air again. It is a 45+ drive from my office to the doctors and it was completely miserable. On the 45+ drive home, I swung by the Nissan dealership and they scheduled me to stop by in the morning and said they'd even have a shuttle service available that could take me to work. So... the whole situation sucks, but at least I seem to finally be getting the help I need.

Anyway, sorry for the long rant... I am doing so well physically I just had to find something else to complain about. I'm even beginning to enjoy chocolate again. :)

A bloody mess...

2010-05-07T23:18:00.000-07:00

It's been a long time since I posted and I honestly don't have much to say, but for starters I wanted to let you all know I am still alive and well. My taste is still coming back a little bit each day, I seem less and less fatigued, and I'm beginning to work around my dry mouth issues. My next big appointment is May 21st, when I will be having my PET/CT. These scans are the way in which the doctors judge whether or not I am truly in remission. I should get the results of the scan the following week.... so come back to this site some time around then for some real news.

But.. as long as I have your attention, I thought I'd share a funny thing that happened today. I went in for my monthly bloodwork, and as I'm laying in the chair with the nurse putting in the saline and drawing out the first syringe, an infusion machine nearby starts beeping. My nurse looked up for just a second to tell another nurse to go change some setting on it.... when all of a sudden, the syringe didn't seal properly at the end, and the back of the thing shoots out and a vile of my blood goes EVERYWHERE! I was covered in my own blood, as was the chair I was in and some of the floor. It was all a big mess. After many apologies and towels, the nurse finished drawing my blood and put on a bandage. I then went to the bathroom and changed into a hospital gown and washed all the blood out of my shirt. Luckily the folks there had a washer/dryer and after 15 minutes in the dryer, my shirt was as good as new! I guess I should just be thankful that I had today off of work, otherwise it would have been more annoying than a funny story.

Well, I suppose that's all for now. I hope things are well with everyone. Goodnight! :)

So much for the life-changing experience

2010-04-18T10:37:00.000-07:00

Wow... I can't believe it's been over two weeks since I last posted. I guess I have just been that busy and not that preoccupied with cancer-related stuff.... Good. Also, my computer decided to bite the dust a couple weeks ago, so posting requires using my iPhone or borrowing my husband's computer, both of which require a tiny bit more effort...

Anyway, it has really been bothering me lately is how "back to normal" things are. As I was going through treatment, I kept making myself promises... like... Once I'm done with treatment I'll make a point to exercise more. or... Once I'm done with treatment I'll start planning healthier menus and eat better. or... Once I'm done with treatment I'll make a point to leave work at a decent time and spend more time with my husband. or... Once I'm done with treatment I'll become an advocate for cancer awareness. or... Once I'm done with treatment I'll stay active on the cancer forums and help out others going through tough times. etc. etc. etc.

I am just failing miserably at every single one of my promises to myself.

I have gotten back into the same rut I was in before the cancer came back. I'm working over 40 hour weeks and coming home later and later (although not nearly as late as before). I don't stay on top of my narcolepsy meds (or maybe that's just my excuse), so I tend to get tired easily at nights and on weekends. When I do get home from work, instead of exercising or being active, I do a minimal amount of chores and then just lay around the house the rest of the night. On the weekends I lay around a lot too. Again, I could be exercising, whether that would entail using the elliptical machine, or just being active and leaving the house. I could be making more effort to spend time participating in my husbands hobbies, like his RC helicopter/airplanes. You would think getting cancer would be a great motivator to start being active, but apparently it wasn't for me.

In the same vein, I'm upset with my eating choices. I continue to make unhealthful meals, just because I know my husband will like them (or at least that's my excuse). Half of our meals during the week consist of quesadillas, pizza, hot dogs, fried food, etc. For someone who enjoys cooking as much as I do, you would expect I would find the time to make better meals. I really WANT to... but by the time I get ready to go grocery shopping on the weekends, I rush to put together a menu and fall back to the easy, unhealthful meals. I also know that I've been tending to come home later, so I want to make sure whatever I decide to make won't take a lot of time. Excuses, excuses...

I'm also upset at my lack of advocacy. I tend to keep quiet about my disease, other than to give updates with how I'm feeling to the people who ask. Did you guys know April is Oral Cancer Awareness month? There are other folks I've befriended on facebook and various forums and they're hosting free screenings at their dentists or getting articles featured about them in their local newspaper or even putting together awareness walks. What am I doing? Nothing. I haven't even blogged in two weeks to be an advocate to the folks that are already listening. I've stopped checking up on the oral cancer forums and I feel bad that I haven't been on there to offer advice to people going through treatment now. During treatment, I joined the i2y (I'm too young for this) cancer foundation - Arizona branch group on facebook. The plan was to try to be active with that group and to possibly go to some of the meet-ups, even if they were in Phoenix.... but I haven't even looked at their facebook page in weeks. I've also been a hypocrite when it comes to cancer prevention. I get so angry when I see people smoking, yet I never bother to use that as an opportunity to talk to them about how much cancer sucks and that they should stop. I get angry when I hear about people using tanning beds, yet again, I never say anything. Additionally, I KNOW I should be a big proponent on using sunscreen, yet the other weekend I decided to go pull weeds in my front yard, and I didn't even bother to put sunscreen on my back. I got a pretty bad sunburn there and was just super embarrassed when I had to see my MO a few days later. You would think of all people I would know better.

I don't know what it's going to take for me to make these changes in my life. I really want to be a better person. I want to live a healthy lifestyle and I want to be an advocate for my disease, but for some reason I just can't get motivated. You would think going through all this cancer crap would have been a life-changing experience. I suppose I need to focus on making these changes one at a time. Maybe I was just overwhelmed with trying to fulfill all my promises at once. Hopefully over time I can become the healthy oral cancer-advocate that I aspire to be.

"I'm going home and I'm gonna, I'm gonna bite my pillow..."

2010-04-02T21:37:00.000-07:00

Ok, weird title I know... But for any of you who get the reference, you're awesome.

Let me explain. It's a quote from the 1996 Christopher Guest classic, "Waiting for Guffman". Today I went to a follow up swallow study and the speech and swallow therapist bore an uncanny resemblance to Corky St. Clair, Guest's character in the film who has that quote. I kept waiting for the therapist to start spewing lines from the movie.

Anyway, humor aside, my swallow study went well. I have no issues with properly blocking my lungs or my nasal passages when swallowing. The base of my tongue (half controlled by the nerve/muscle I had removed) does not quite raise as much as it should, which is why I have such difficulty eating still. When I swallow, I leave residue behind. It takes me 2-3 swallows for a normal person's 1. It also means I can't quite reach the food that gets stuck to the roof of my mouth. The therapist gave me some suggestions for exercises to do to strengthen the remaining tongue muscles.

Even so, I was quite bothered by the therapist's and radiologist's attitudes. When I complained about how long it took me to eat or how I hated the way my speech had become, their response was that it was normal for someone having undergone my treatment and I should be thankful for being in as good of shape as I was. I replied that it wasn't normal for your average 25-year-old. Their response was that I wasn't a "normal" 25-year-old. *sigh*. That shouldn't matter.

Well it's getting close to bed time. I have to get up early tomorrow for some more doctor check-ups. Good night.

Insidious Tastebuds

2010-03-31T20:32:00.001-07:00

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

2010-03-29T10:31:00.001-07:00

"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

2010-03-25T10:57:00.001-07:00

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!

2010-03-22T20:37:00.000-07:00

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

2010-03-17T21:38:00.000-07:00

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

2010-03-16T21:57:00.001-07:00

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

2010-03-08T22:02:00.000-07:00

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

2010-03-06T22:47:00.001-07:00

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

2010-03-03T18:55:00.000-07:00

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? :\

I ate a cheeseburger!!!

2010-02-27T21:54:00.000-07:00

I've been craving a cheeseburger for the past several days or at least some type of meat. I don't think I've eaten meat in weeks. Things didn't seem to be burning quite as bad today, so when Jake said he was going to pick up McDonalds for dinner, I asked him if he thought I could handle a cheeseburger. We decided it was worth a shot. I took an extra percoset and managed to eat an entire cheeseburger with only a little bit of pain! It took me 40 minutes and two full glasses of water, but I did it...a whole cheeseburger! You wouldn't think someone could be so happy eating McDonalds.

I am in such a great mood now and hopeful for days to come. I definitely need to continue to avoid the types of things that would aggravate mouth sores, like spicy or acidic food, but I have hopes of eating solid food....even if I do have to do a lot of rinsing with water.

Things aren't 100% yet, though. My taste buds are still pretty much shot. I could only barely taste the food and was mainly enjoying the cheeseburger by its smell. I should expect this to continue for the next couple years. I also wouldn't be surprised if when tastes started to come back they were metal-like for a while. That is almost inevitable. It's a bit depressing knowing that I won't be able to really appreciate food for so long. I am just thankful that I may start being able to eat again. I'm just that much closer to being normal again.

I miss eating

2010-02-25T20:22:00.000-07:00

I was so excited earlier in the week. I felt like I was making such vast improvements every day. I seem to have reached a plateau now. My mouth sores persist and my saliva remains thick. All of this made the days at Disney get more and more depressing. It was so hard watching Jake enjoy all the fun amusement park food. What I wouldn't have given to have a corn dog or funnel cake or cotton candy. It just hurts so much to put anything in my mouth. Even the Ensure continues to burn. I force myself to chug down ensure or melted shakes/floats. I take a few sips, then have to rinse it with water. It still feels like my mouth is on fire.

I miss eating food so much. I am somewhat of a foodie and not being able to try out new recipes or try new food at restaurants is so aggravating. I haven't had real food in months. I have no idea when my tongue will stop burning, but it better be any day now. I just don't know how much longer I can deal with this.

I guess on the positive side, otherwise I'm feeling pretty good. I'm able to work again which is a nice mental distraction from all of this. I'm able to go the day without spitting too much provided I have my water bottle close by. I get several hours of sleep before waking up needing to spit. My neck is looking a ton better. I should be thankful I've done as well as I have.

I just really hope these mouth sores go away soon. It seems it shouldn't be like this for more than another two weeks, but two weeks is still a really long time. :\

Day 1 at Disney

2010-02-20T18:10:00.000-07:00

I just wanted to put a quick post today and let everyone know we made it safely to Florida and had a good day today at the Animal Kingdom.

Yesterday went well until we got to the hotel. I managed to make it through the day without too much spitting. When we got to our hotel room I got sick and just needed to lay down. Jake wanted to eat dinner but all the restaurants and room service was closed for the night. Then we found out our reservations were messed up and had us checking out a day early. It was really a nightmare.

Luckily by the morning I was feeling a ton better and we managed to get a room for our last day here. I made it at the park today without too many complications. There were moments of having to spit in the grass at the park, but I was able to ride a few things without getting nauseated. We took it easy and it was nice to be out in the sun and having fun.

My tongue is healing nicely, but there are still open sores that burn when food touches it. I managed a root beer float in the park and then for dinner tonight the family ordered a bunch of pizza. I actually got down about two bites after numbing my mouth with lidocaine and then rinsing it with water. It was nice to have something in my mouth that wasn't ensure or ice cream. I'm hoping the sores continue to heal so I can branch out even more from all the ensure.

Here's to continuing to improve exponentially!

You just beat cancer, what are you going to do now?

2010-02-19T08:16:00.000-07:00

I'M GOING TO DISNEYWORLD!

That's right folks. Today Jake and I are leaving to Florida for a fun-filled time of relaxation and Disney characters. This isn't completely out of the blue. This trip has actually been in the works for almost a year. Jake's family is having a reunion of sorts and it was scheduled for this weekend. This weekend was blocked off on my calendar for so long...looming there at the end of treatment. I kept wondering if I'd be well enough to make it. We had plane tickets, but that was it. Only a week ago did I finally call the doggie hotel, get a rental car, get tix to DisneyWorld (at a slight corporate discount - the company I work for just opened a ride there where you do math on a roller coaster, it's called 'the Sum of all Thrills' - how dorky! hehe). Jake's mom got us a room as part of the block rooms for the reunion quite a while ago, so we were all set there as well.

I am really looking forward to a real vacation. I'm still worried how a lot of my lingering side effects will play into all of this. I woke up this morning, realizing my mucus, while still thick, was quite a bit thinner than before, to the point where I could swallow it. It still hurts to swallow, but with cold water it's not too bad. This will be a much better alternative than have a spit cup on the airplane. I'm hoping this also means that I won't feel too bad leaving my suction machine at home. A nurse had suggested getting a doctors note to take the machine to Florida with me. It's only like 5-10 lbs.....but still, it just seemed like it would be a pain.

The thing I'm most worried about is eating though. I haven't eaten a thing but ensure and melted ice cream for the past week or two. I plan to bring some ensure in my checked luggage, but that will only get me so far. With walking around themeparks, I'm going to need more nutrition than my typical 1000 calories per day or so I've been consuming lately. Even if I make sure to down two medium McDonalds shakes a day (~1500 calories), that's not really nutritious. I am pleasantly surprised at how vast the improvements are from day to day. My hope is that by a few days into the trip I'll be able to eat soft foods again. I'm very sad by the fact that the reunion is having a special dinner and brunch that I won't be able to participate in. I'm also sad by the fact that I won't get to eat my way around Epcot. That is one of my favorite things about DisneyWorld, trying all the fabulous foods from around the world. Maybe I'll just have to settle for a world review of ice cream. :\

I guess the last concern is my neck. It is still pretty rough. I was told to wear a "sombrero" by the RO (He thought that was just hilarious, too), but all kidding aside I should wear a large brim hat, to avoid sunlight on the scar, yet not irritating it with scarves. I don't know, though. I'd much rather wear a light scarf than a wide brim hat. A scarf will stay on you while you flipped upside down in a roller coaster. I'm not too sure about a hat. I guess I'll bring both and see what happens. Regardless, there will be lots of sunscreen.

Wow. This has been a long post. I guess I am just very excited and anxious about the trip. Regardless, I am looking forward to a very much deserved vacation. :)

Back to work already

2010-02-17T18:33:00.000-07:00

Well, I may have done it earlier than I should...but I went back to work today. I really felt pretty great most of the day. The main problem continues to be that my saliva is super thick and mucus-like. I have a hard time swallowing and choke on the mucus. So, I was forced to have a spit cup or Kleenex at my side all day. I kept the spitting down to a minimum and the people around me who had to hear me spitting seemed to understand. It'll be a while before things are back to normal so it seems a shame to stay at home for just the one side effect. I don't know. Maybe I'm just crazy and/or a workaholic.

The day went well. People were really happy I was back. The one program I work on was covered really well while I was out and so I barely had to do a thing with it today. The other program had dozens and dozens of things left for me to take care of, so I was a bit disappointed there. Some things were done by my back-up, but not a lot.

My day-to-day boss remembered that I had said when I come back I might be low on saliva and need water at my side 24/7, so she worked to get me a special water bottle that I could keep in the closed factory area. One of my coworkers heard about the saliva thing and brought me these special super absorbent wipes that could be used instead of like 8 Kleenex. Another coworker offered me her too small clothes since I am now swimming in my work clothes (I ended up netting a loss of 15 lbs). I really feel like people were looking out for me and feel very loved. I really missed my coworkers.

I also had my year review today with my section lead and found out that I was ranked in the topmost percentage of my coworkers. I had one minor negative and a billion positive things said about me. It looks likely that I'll be getting a promotion when those are announced in a month or two. I'm very excited!

All-in-all, it was a very good day. I hope my mucus issue gets even better so I can have an even better day tomorrow. :)

You can call me NED

2010-02-15T18:28:00.000-07:00

It's good to be done with radiation treatment! I almost cried during treatment I was so happy to be done. The doctor says by the end of next week I will feel like a whole new person. I am looking forward to it!

The radiation techs let me take home my mask. Hera (our min-pin) is horribly scared of it. Ares (our corgi) felt he had to sniff it out.

So does this mean I can finally consider myself in remission? Have I been in remission since surgery? Do I get to finally start my 5-year clock to being considered cancer-free. Has it already been clicking? I still might be in treatment, though. We still don't know about the mop-up chemo. Today I've adopted a new label, NED - No evidence of disease. This is a legitimate way of classifying yourself in the cancer world and that's how I will identify myself for now. I may or may not be in remission. I may or may not be in treatment. I may have to deal with physical and mental issues the rest of my life because of this cancer. That doesn't matter now. The important thing is that right now there is no evidence of the disease and that's the best we can hope for.

Flowers Flowers February

2010-02-14T10:30:00.000-07:00

Well, Happy Valentine's Day to all of you out there! Jake and I decided a week or two ago that we would postpone Valentine's Day this year. What's the point of going out to a fancy restaurant if I'd just order poached eggs, ice cream, and water? We also figured the flowers would be cheaper.... Well, Jake is too great of a husband and had already ordered my Valentine's Day flowers weeks ago. So yesterday I was surprised with the most beautiful arrangement. (For those of you at my wedding, note the similarities to our wedding bouquet. What a great guy!)

The flowers are now flanked by the other sets of flowers received within the past week or so. Some beautiful lilies from Allison:

And a spring arrangement from my in-laws:

Our house is smelling like a greenhouse! I guess it's just more encouragement knowing that the end is in sight. I've also been overwhelmed with many great cards lately. Keep it up! I love the little bits of encouragement.

That being said, Jake and I still are thinking of leaving town next weekend....so no new flowers for a while, guys. Hehehe. Thanks. :)

1 more to go and feeling pretty good

2010-02-13T09:28:00.000-07:00

Well, my vision isn't so blurry anymore, so it's time for a decent post. I woke up this morning feeling relatively well. At this rate, I'll be back to work mid next-week! (I promise I won't go back until I'm ready, though.) I have one little treatment left on Monday and then I'm done (I hope....I still don't know for sure about that whole mop-up chemo bit).

I feel bad, though, because Jake is pretty under-the-weather. I think as he's adjusting his meds it's causing all sorts of bad side effects. Hopefully he gets those straightened up and can get a decent night of sleep. I'm getting used to 2-4 hour segment style of sleeping....it's really not too bad. In Jake's case it's 2-4 hours of sleep at all would seem like a blessing.

I'd say the worst thing going on now is my neck burn. It's all blistered and cracked and gross. It doesn't feel that bad though, just stiff. I mean....I guess I still can't really eat, but that's sorta become the normal. I'm used to waking up, forcing down an ensure, forcing down another one later in the day, etc. I don't want to jinx it, but it doesn't seem to be burning as bad lately, so that's good.

I suppose that's all for today. One more treatment to go and I'm feeling pretty optimistic.

Another delay in treatment

2010-02-10T21:12:00.002-07:00

Today I sat in the treatment waiting room for over an hour waiting for the machine to be rebooted. It never got up and working, and so I wasn't able to get treatment today. It should be fixed for tomorrow, but this pushes me back until Monday to be done. I am very frustrated and I just want to finish. The vision is still blury or else I'd write more. Good night.

Three, it's a magic number

2010-02-09T17:33:00.000-07:00

Well... they gave me treatment today. My RO told me to stop being so stoic and tell him if I'm in any pain and we would stop again.

I feel ok enough for now, so we will try to push through to the end.

My vision is blury due to the anti-nausea meds, so this is all I will post today and maybe for a few days.

Thanks everyone for the support. <3

STILL 4 treatments to go :(

2010-02-08T17:53:00.000-07:00

I showed up for radiation today and the radiation techs looked concerned about my radiation burns on my neck. They had Dr. Nguyen take a look. Dr. Nguyen wanted to postpone treatment for a few days. We compromised on checking it out again tomorrow. I guess the problem is that my neck started bleeding. When that happens, the radiation can cause the cuts to rip open during treatment. The only way to properly heal them is to give them time. I'm going to put a ton of anointment on my burns and then hopefully not have all the bloody marks tomorrow. I just want to finish! I'm having a hard time keeping it together.

Here's a glimpse at my neck. It's not THAT bad, is it? :(

Getting my last (maybe) dose of chemo

2010-02-08T12:19:00.000-07:00

Right now I'm sitting in my chemo chair, snuggled up in a beautiful quilt made and sent to me by one of my favorite high school teachers (it continues to astound me at the people from my past who continue to contact me and send me gifts and well-wishes during this time), forcing myself to eat some yogurt and drink lots of water, while watching the last bag of chemo drip into my port.

The days go by like roller coasters. I wake up in the morning feeling absolutely horrible. I take some pain meds and drink a ton of water, by an hour later or so, I start to really feel fantastic. An hour or so later I begin to feel icky, maybe even somewhat quesy (This is probably b/c I'm not eating when I take the pain meds. I have to wait for the meds to kick in before I feel ok enough to eat and make it so food only burns at a 4 or 5, not a 6 or 7). Then I start to feel local pain in some of the mouth sores on my tongue. I take some lidocaine on a q-tip, suck on that for a bit, and feel better for another 15 minutes or so. I start to feel bad again. I begin to notice the skin falling of my neck and places on it start to bleed. I start coughing. The mucus in my throat becomes overwhelming. I use my suction machine and/or drink lots of water and it starts to get better. 3 hours are up, so I take more pain meds. Within the next hour, I start to feel really fantastic and the cycle starts again. Right now I'm at the skin falling off / neck bleeding part. Not fun.... but I'm looking forward to the pain meds in 1/2 hour.

I did drive myself to treatment today, but I timed it so that I was driving during that "feeling fantastic" part. I don't think my timing will work out as well for the rest of the appointments. I'm hoping I do ok and if not, Jake will just have to figure out a way to get both cars home. :\

Lastly, to address the "(maybe)" from the title..... I was told at my last visit with my MO that this might not be the last of the chemo treatments. We may still opt for mop-up checmo. If we do this, it won't start for a month or two after this round of treatment is done and it would be 5 days straight, once a month, for three months. Right now it is up in the air. We will be discussing whether or not I should do it at my March 8th appointment. I'm ever-so-slightly leaning against it, but I will wait to hear what the MO has to say and what studies support this type of treatment. I've seen other oral cancer patients get this type of chemo instead of my type, but never both. We'll just have to wait and see.

My newest prescription sucks

2010-02-06T16:05:00.001-07:00

Literally.

On Friday I asked if I could get a prescription for a home suction machine. Since my appointments are so late in the day, by the time I left, most medical supply stores were closed until Monday. I called this one store and they said it wasn't a problem and they sent out a guy to bring the thing to my house and set it up. It was awesome. I have no idea how much this will cost, but I'm hoping not much. They submit the form to my insurance and I pay the difference.

This machine is great at getting all that extra mucus out of my throat. I'm still having a lot of trouble with that. I notice myself falling asleep and waking myself up with the snoring-like noises I start making. It's actually a gurgling of mucus in my throat as the air goes past it. ewwwwwwwwww.

I'm tired and have a lot more mouth sores, but the pain meds work well and I'm trying to take lots of naps.

It's a little lonely around here. My mom left this morning. It was great having her around to drive me to appointments and really clean the house. I appreciated the help so much. My mother-in-law is coming this next week to help out with my final week of treatment.

That light is continuing to get brighter. Only 4 more treatments to go! :)

Only a handful to go...

2010-02-05T09:44:00.000-07:00

I'm down to only 5 more radiation treatments! The light at the end of the tunnel is getting brighter. I only have another 2 Ethyol (amifostine) shots. With chemo on Monday, I won't get shots Tuesday - Thursday for fear of nausea.

I'm still feeling icky here and there, but my MO upped my dosage of pain meds, so I've been having several "feeling good" moments. I actually pretty good most of the time, until I try to swallow or eat something. I'm glad it's Friday (my last Friday....woohoo), as I now have 2 days to hopefully get rid of some of the swallowing pain due to mucus build-up.

I know many of you have contacted me telling me not to plan to go back to work on 2/15.... but here's the thing.... I don't want to jinx myself, but I have plans to go with Jake to a family reunion of sorts for 2/19-2/24. I don't think the short-term disability folks would be happy to know I was using my time off to go on vacation. As long as I don't feel too fatigued, I think I can handle 4 days of work, then take my vacation. Those short-term disability folks are tricky. They asked me weeks ago when I thought I could come back to work. I told them I had absolutely no idea, but my treatment would be done on the 11th and so the very earliest possible might be the 15th. Now if I want to extend my STD beyond the 15th I have to fill out all the paperwork again. We'll just have to wait and see about everything. Don't worry everyone, though. I will not go back to work until I feel good enough to do so.

Not enough saliva, too much mucus

2010-02-03T14:26:00.000-07:00

Last night I added another step to my before going to bed routine. In previous nights I was waking up with almost no saliva in my mouth. I am now using a spray for dry mouth, which seemed to let me sleep a little bit better. Well...it was either that or the percocet or both. Now my nightly routine is take meds, magic mouthwash, brush my teeth, have a fit from the stinging of the toothpaste, drink a ton of water, coat my mouth with gelclair (mouth sore soothing gel), spray to prevent dry mouth, use lidocaine to numb any remaining mouth pain, fill the humidifier with water, and finally hop into bed. Then I wake up multiple times during the night and get to repeat whichever of those steps I think will help the most. It's all just getting very tiring.

This morning I was taking a nap and woke up short of breath. I was having trouble breathing because my throat was so full of mucus. I tried coughing it up to no avail. I eventually was able to help get rid of some by gargling with a salt water solution, then drinking a lot of water to try to rinse down the rest. I'm going to talk to my nurse/doctor today to see if I can add taking mucinex to my medication regimen. I worry about sleeping too much and waking up to another fit like this.

It's all so frustrating. My throat is full of liquid, yet my mouth is so dry. If I didn't have only 7 more treatments to go, I don't know if I could do this. I can't imagine how bad most head & neck cancer patients have it. My doctors and radiation techs continue to be amazed at how "good" I'm doing. :\

Pepsi Refresh Project

2010-02-02T14:43:00.000-07:00

I just have a quick post today. I don't know if you guys have seen the commercials (I'm stuck at home watching a lot of tv, so I've seen one or two already), but Pepsi is sponsoring a contest of sorts. They are giving away millions of dollars every month to deserving ideas to improve communities and the planet, from arts to health to shelter to education. Right now the oral cancer foundation is in the running for a $250,000 grant for a PSA/commercial campaign to raise awareness for oral cancer screenings.

They need votes, though, so go here and vote! You can vote once per day, but only with one email address or facebook account (per the rules). It's a simple thing you can do to promote oral cancer awareness without spending any money.

Thanks to anyone who participates and votes. :)

Not enough percocet in the house

2010-02-01T20:25:00.001-07:00

This morning I decided to take the one percocet I had left over from pre-surgery. I was able to eat/drink witth only increasing my pain to a 4 or so. Before the drugs, it had gotten to the point where even the ensure and yogurt was knocking the pain up to a 6 or 7, so a 4 was a welcome surprise. Also, I had gotten to a point where every 15 minutes I was sucking on a lidocaine dipped q-tip. With the percocet, I didn't really need to do that.

So, when I saw my RO today I asked for a prescription for some percocet. He gave it to me and I dropped it off at Walgreens. Unfortunately, he forgot to write the strength on the prescription, so the pharmacy has to wait and fill it in the morning after they talk to him. :(

In the meantime, I thought maybe I could take Jake's percocets. Unfortunately, he is almost out of them and even though he called his neurologist's nurse on Tuesday to say the percocet wasn't working well and could he get a prescription for something else, he hasn't heard back from her. He called a different number today and they claimed he didn't leave a message until Thursday...which is a lie...and that he was just going to have to wait for the neurologist to call him back.

So we only have enough percocets in the house to last one person 2 days. We're both in pain and both waiting on word from our doctors to fix/get new prescriptions. I guess we'll just have to start rationing it out. :\

A series of serious posts #4

2010-01-31T17:49:00.001-07:00

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

2010-01-30T11:00:00.000-07:00

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

2010-01-28T19:13:00.001-07:00

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!

2010-01-27T18:14:00.000-07:00

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...

2010-01-26T07:50:00.001-07:00

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

2010-01-24T11:18:00.000-07:00

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...

2010-01-23T12:30:00.000-07:00

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...

2010-01-23T09:08:00.000-07:00

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

2010-01-20T22:00:00.000-07:00

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!

2010-01-19T08:07:00.003-07:00

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

2010-01-18T10:49:00.000-07:00

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

2010-01-17T16:28:00.003-07:00

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

2010-01-16T15:14:00.003-07:00

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...

2010-01-14T21:11:00.002-07:00

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

2010-01-12T19:25:00.002-07:00

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?

2010-01-11T20:17:00.002-07:00

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...

2010-01-10T14:47:00.004-07:00

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

2010-01-08T22:07:00.002-07:00

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

2010-01-07T17:58:00.004-07:00

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

2010-01-06T20:37:00.004-07:00

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

2010-01-06T18:54:00.002-07:00

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

2010-01-05T18:31:00.002-07:00

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

2010-01-04T18:22:00.002-07:00

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

2010-01-03T16:02:00.003-07:00

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...

2010-01-02T17:20:00.002-07:00

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

2010-01-01T15:02:00.002-07:00

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

2010-01-01T11:29:00.002-07:00

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. :)

No partying for the chemo kid...

2009-12-31T16:49:00.003-07:00

Just in case you all were wondering what fun and exciting plans I had for this new year's eve... there aren't any. :( Well, at least not your traditional new year's eve fun. No drinking allowed while I'm on chemo...at least not for the first couple of days. If I'm already slightly nauseated, the extra push from alcohol would not be a good idea. I have this homemade eggnog in the fridge, too, so I'm a bit saddened I can't have any. Jake is on so many meds that he's not supposed to take with alcohol and my mom is a diabetic.... so the eggnog just waits.

Meanwhile, I've been enjoying the company of my mom and sister. They might not be having a lot of fun, but we've managed to really clean up the house and just spend time together. I think tonight we'll watch movies and play games. It'll be like new year's when I was a little kid... getting to stay up late and play card games with my family.

So...I may not get my toast at midnight, but I'll just be thankful to be with my family and to be getting one step closer to getting rid of this cancer once and for all.

The machine is down...

2009-12-31T10:37:00.003-07:00

I just got a call from one of the technicians and I guess the radiation machine is down, so no radiation today. In one respect I'm happy, because I was starting to get side effects, like my throat seems to be closing in a bit and my neck is starting to get irritated/itchy. On the other hand, I will be making up this missed day by coming in on Sunday, therefore making next week a 6-day week of treatment. Three days worth this week was taxing enough, I can only imagine how bad next week would be.

I'm doing a little better tiredness-wise today, but still just feel out of it. I hope I feel better by Monday or else I'm going to be skipping out on work a lot earlier than I had anticipated. :\

exchanging nausea for napping

2009-12-30T17:35:00.002-07:00

Well, I tried to wake up during the night to take the anti-nausea meds, which seemed to make things quite a bit better today. However, I have been soooooooo tired, it's ridiculous. For someone who already knows what it's like to be tired (as mildly narcoleptic) this is taking it far to the extreme. I can barely stay awake more than a few minutes. This "chemo fatigue" as they call it, seems to be normal, but it sure is annoying. The doctor suggested trying to go for a walk tomorrow morning or something. We'll see what I can do.

Anyway, that's about all I can write for now, I need to go lay down for a bit. :\

And the side effects begin...

2009-12-29T17:32:00.002-07:00

So last night as I was sleeping, I kept waking up feeling slightly nauseated and thinking I was asking Jake for medicine, when in fact, I think I was just dreaming most of that. Around 7 or so I actually woke up and asked Jake for medicine, but I think it was too late. I have been extremely nauseated all day. The only thing I've been able to keep down so far is some water. I couldn't even keep down the honey I'm supposed to take with the radiation treatment. *sigh* It hasn't been a good day. I'm hoping this is just the nausea from chemo that is only supposed to last a day or two. On the bright side the radiation mask didn't seem quite so tight and I made it through the whole scan without needing to puke. :\

You can call me waffle-face

2009-12-28T18:34:00.002-07:00

1 treatment down. 32 to go.

No side effects to report of yet. The chemo went well. The port is soooo much easier than getting an IV inserted in to a vein! For the chemo appt. I had blood drawn, anti-nausea meds, fluids, cisplatin, then more fluids. Aside from the many trips to the bathroom due to the high amounts of fluid, I just sat around and played board games with Jake... and then my mom and sister too when they showed up. :) All in all, a long but not too terrible experience.

The radiation was a little more unpleasant. The whole appointment was probably less than an hour, but THANKS to Dr. Nyugen's fatten-me-up diet, I had put on 5 lbs since the mask was made and so it was REALLY TIGHT! I left the machine 20 minutes later with the plastic grid imprinted in my face. Next time I'll be sure to get all of my hair out of the way and hopefully maintain or not lose more than a few lbs over the next few weeks. :\

Well, dinner is in the oven, so I better go keep an eye on it. Thanks everyone for the well-wishes today. So far, so good. :)

tomorrow, you're only a day away

2009-12-27T12:59:00.002-07:00

Today is my last day of rest before my months-long personal war on cancer begins. So, do I have exciting plans for today? Did Jake and I ever go skiing? No and no, but you know what? That's ok.

My plans for today include tidying up the house, doing dishes, roomba-ing, and grocery shopping. This may not seem like an enjoyable way to spend my last day pre-treatment, but to me I just want to feel normal. When the day comes that I can't take care of basic household tasks, that will be the day I feel defeated. Plus, if I get the house in its best shape now, it will take less to maintain that over the next several weeks.

I'm actually enjoying just spending time at home, as well. We finally got our tv and surround sound set up. I was decorating cookies in the kitchen yesterday while we were watching a movie. I was looking down at the cookies when someone in the movie started shooting a gun. For a split second I thought someone was shooting at me! I guess we have a pretty sweet setup, but it makes for some scary movie-watching experiences.

My mom and sister were supposed to be here today. The weather was pretty horrific in Oklahoma, though, so after driving about 20 miles yesterday they had to turn around. Luckily I got a phone call an hour or so ago saying the sun had come up and they had made it past the affected area. They were on their way. Horay! They should be getting in some time tomorrow. I guess they won't be playing games with me at the cancer center tomorrow morning, but I am very happy they were able to make it at all. :)

This also explains why I will be spending today cleaning house. Yes, I know, I have an excuse for not keeping my house clean... but there's this instinct you have to have your house in tip-top shape whenever your parents show up. I don't know why I have it, I just do.

On that note, I better go. I have some dirty dishes calling my name.

Merry Christmas!

2009-12-25T21:58:00.000-07:00

Again, I don't have much to write about. Jake and I had a quiet day at home. I did some baking and finally printed out our holiday letters (I'll be mailing those all tomorrow). Jake went out flying his RC helicopter. We rented some movies. All-in-all it was a good day.

I just wanted to quickly post to wish everyone out there a Merry Christmas. I find out every day more and more people that are reading this blog. It gives me strength and comfort to know there are so many people out there taking interest in my story and wishing me well. Thanks to you all!

So... Merry Christmas to all and to all a good night. :)

It's official.

2009-12-23T20:05:00.002-07:00

Treatments start Monday, 12/28. They finished my radiation plan and called me today to schedule. I will be starting chemo at 8am Monday morning followed by radiation treatment 1 of 33 at 3:30pm.

My mom and sister are coming to visit next week (yay!) but it seems they will spending their first full day here at various cancer centers in town. Oh well... they're coming to spend time with me, right? It doesn't matter if we're hanging out putting together jigsaw puzzles while I'm having metallic cancer-fighting drugs pumped into me. :)

I don't really have much more to write about. I have a nice break from work for the next 1.5 weeks. I'm enjoying my break from doctor visits by doing a lot of fancy cooking and baking. Other than that, Jake and I are excited about getting our Christmas gift to each other all set up (a new tv with surround sound speakers). The various components (tv, receiver, cables, speaker mounts) have been/will be arriving in the mail each day, so that's been fun.

Until next time then.... :)

Our kitchen counter looks like a pharmacy

2009-12-19T20:56:00.003-07:00

Believe it or not we're still waiting on 5 more prescriptions to be filled between the two of us!

In addition to the normal tylenol and excedrin we have lying around, I've been given 2-4 prescriptions from every doctor I've seen in the past couple of days. Jake has been filling his fair share of prescriptions, as well.

Yesterday, we met with Jake's neurologist again. I really don't know how much I trust this guy anymore. When we told him the steroids weren't doing anything he asked if we wanted to continue on them for a few more months to see if they eventually did. He still seemed to think Jake was suffering from HE, when the steroids clearly weren't doing anything. I brought up the fact that there are people with high antibodies levels that do not have Hashimoto's diseases, and his response was that there was a small subset of people where that was true, but since Jake had high levels, normal scans, and neurological pain symptoms it had to be HE. Regardless of the doctors confidence in his diagnosis, he told Jake to go ahead and taper himself off the steroids (without actually giving us a step down plan) and then gave him prescriptions for two drugs that might help (one being Lyrica, a treatment for fibromyalgia, which I had Jake ask about the first day he saw this doctor. The doctor had said there was no way it could be fibromyalgia and did all those other tests first.). The neurologist also refilled the prescription for percoset, so at least Jake is in a good mood most of the time. I'm tired of Jake having to establish himself with new doctors all the time, but I'm wondering if it's getting to the point to do that again.

Taking a week off from cancer

2009-12-19T09:49:00.002-07:00

Well, I called the RO's office yesterday to see if they had my program created yet. They did not. They said they might have it done by Wednesday or Thursday but I should probably just plan on waiting a week. So, the new plan is to start chemo and radiation treatments on Monday, Dec. 29. A lot of you might be thinking how great it is that now I don't have to be dealing with that for Christmas, but the truth is now that just puts me one week further back from being in remission. I'm a bit bummed that it didn't work out.

So now I'm just trying to figure out what I'm going to do during this week off from cancer. I'm trying to think of things that may not be as easy or enjoyable once treatment starts. Maybe Jake and I will venture up to Mt. Lemmon (and if snowy enough, go skiing). I should probably do a lot of baking since my taste buds will be messed up for about a year (at least) once treatments begin. Maybe I should do lots of drinking since I'm not supposed to do that while I'm on chemo. Hmm... that one doesn't sound like that good of an idea.

Oh, I also want to let you know I'm off of vicodin. I took some tylenol yesterday and don't really think I'll need anything today. So.... I should be fully alert at work on Monday. :)

Vicodin, friend or foe?

2009-12-17T22:15:00.002-07:00

This relatively smooth surgery yesterday was just a cover-up for the fact that it still is painful to have some foreign thing jammed into your chest. It's not too bad, until I decide to move my right arm up and in front of me.... like to turn off the alarm clock, or brush my teeth, or pull my hair back, or pick up my coffee mug, or put on my coat, or pick up my purse, etc. Luckily, this vicodin stuff is pretty awesome and makes the pain go right away. Of course, it also seems to make all my concentration and alertness go away too. It was pretty hard to get anything done at work today to tell you the truth. I ended up working on my year's accomplishments tonight at home (they were due today... whoops). I don't know if this working + vicodin = a good idea. I think last night I responded to someone's email with "42" and then started laughing hysterically. Yes, I know that's the answer to everything. The question was if I knew how many of a certain tool we had. The answer really was 42. Finding out that "How many holding fixtures do we have?" is the ultimate question was kind of a let down.

Anyway, I'm sure half of what I'm writing makes no sense, but hey, at least I'm not in any pain.

I'll try to update tomorrow after Jake's visit with the doctor. We'll also be heading back to the chemo clinic for an "Intro to Chemo" class with the nurses. The clinic is nearby some malls and Jake and I have a bit more holiday shopping to do, so it should be a good afternoon.

Until then.... good night.

So I stayed awake for surgery...

2009-12-16T16:36:00.002-07:00

So this marks my 2nd post within an hour. Maybe that's against blog etiquette. I have no idea. I'm just sorta confined the the couch right now, so laying back and typing is about the most active thing I can do... so I figured I'd blog about the port surgery.

So, I have to say UMC gets high marks for efficiency. My two previous surgeries at the Mayo Clinic always involved long waits for everything. This port placement procedure at UMC had me checked in to out the door in 4 hours! I was very impressed. They also had this neat monitor in the waiting room with a patient number and color codes for pre-op, various stages of the operation, or the recovery area. So Jake got a number when we checked in and he could keep an eye on where I was the whole time. Very cool.

The scariest part of the day was when I had my meeting with the anesthesiologist. He took a look at how my tongue was a bit constrained from moving down and the fact that my previous surgery still had me a bit stiff and harder for me to tilt my head up. He suggested that we just do local anesthesia and just drug me up so I don't really remember what was going on. Even if I didn't remember it, the idea of being in a room where I'd be having things jabbed into my chest while hearing and feeling things going on was really quite frightening. I weighed the pros and cons.... I really wouldn't remember it, I wouldn't have to worry about coming out with a sore throat from being intubated, I would be released quicker, there were less risks involved.... The only con was just the idea of how scary it might be. The anesthesiologist assured me that since we'd be talking, if I indicated I was in pain or uncomfortable, he could always just put me out with general anesthesia. So I went ahead and opted to be awake for surgery.

You know what...it wasn't that bad. I remember discomfort in my hand from the drugs going into the IV. I remember blue sheets over my head. I remember asking if the port was in or asking if they were putting in stitches or whatnot. I remember Dr. Ong telling the resident something about how surgeries were like cooking because you have to line up things ahead of time. I think the resident put in the stitches and I remember Dr. Ong telling him it was one of the best looking ports he's seen. Then as they were cleaning up I started coming back to normal. I was able to move myself from the surgery table to the one that rolled me to the resting area. They got me some juice as they took my vitals and wrote my discharge instructions & prescriptions. Before long I was dressed and in a wheelchair being taken out to Jake's car.

Now I'm laying here on the couch. The local anesthesia is starting to wear off on the incision site. Jake took my prescriptions to Walgreens (all 7 of them! 2 from the RO, 3 from the MO, and 2 from the SO). I think I need to take some of this vicodin soon, but unfortunately the vicodin is still in process and when I just called them to ask the status they said they'd have it ready in an hour. An hour! I'm in pain here! What is wrong with these folks. :(

Jake just left to go talk some sense into them in person. I'm going to try to take a nap until they're ready.

Yay for a good surgery experience. Yay for a good-looking port. Yay for a husband to take care of me. Yay for not having to get IVs again!!!!

Boo for Walgreens pharmacy staff today. (and they're normally so good)

A post about Jake <3

2009-12-16T15:51:00.001-07:00

First of all I will just start by saying how great my husband has been through all of this. With his own medical drama, he still manages time to take me where I need to be, make late night runs to pick up ensure, drop of my prescriptions at Walgreens while I'm laying on the couch making blog posts because I'm still groggy from the local anesthesia, etc.

Mostly though, I'd like to write about him since I have been getting a lot of emails asking how he is doing or phone calls from my mother saying people are asking her about him. I realized I left you all in limbo after his hospital stay 2 weekends ago.

So...a little update. Unfortunately, about the best thing that came from his hospital stay was a prescription for Percoset. His chronic pain issues have not subsided one bit. It seems his headaches may have died down a bit, but other than that, there has been no improvement. IF he had HE and IF that was what was causing his pain, that steroid treatment would have had him feeling tons better by now. My impression from the doctors was that his raised antibodies levels clearly indicated that he had a Hashimoto's disease and since he had normal thyroid function and seemingly neurological symptoms, it was definitely Hashimoto's Encephalopathy. In doing more research (or mainly in getting more links to research from Allison) it seems that even some normal people can have raised antibodies levels. That didn't seem to be the impression the doctors were giving us. It is all very odd.

So now Jake is taking very high doses of steroids daily, which have no effect on his chronic pain, but have caused him a lovely array of side effects... like being hungry/eating all the time, not being able to go to sleep until the wee hours, and easily getting irritated. Fun times.

He has an appointment with the doctor on Friday and with all the research we've been doing on our own, we have some theories we will be discussing with him. I hope from there we can finally do something to get him better. This is just getting ridiculous.

I love you, Jake. <3 Thanks for all you do to help me out. :)

I got a tattoo!

2009-12-14T19:48:00.002-07:00

It's a really small one, but still....

Let me start from the beginning. So I went in for my simulation today. I walk into the office and nurse Steve sees me and is like "Oh good. Follow me. I'll start your IV." What? IV? Why am I getting another one of these stupid things. Turns out they wanted to use contrast with my simulation to help them map better. Great. Steve started an IV in the top of my hand, my least favorite spot, and I was ready for the radiation therapist. She led me back to the CT scanner room and I got dressed into a hospital gown. She taped wires along my scar lines (including the one on my tongue) so that it would show up in the scan.

Then the spa treatment began. I laid down on the scanner table and was given a warm blanket to make me comfy. Then they placed this bolus (kinda reminded me of ballistic gel) on my neck area. This was to add a imaginary layer of skin above my regular skin so that the radiation beams would be able to be increased at my skin/scar line. After cutting the bolus to the correct shape, they pulled a bust shape plastic mesh out of warm water and put it on my face. They pressed it to the contours of my face and snapped it down to the table. As that cooled and hardened, the radiation therapist put metal dots on the mask so that could show up in the scan as well. She also marked a small dot on my chest with a sharpie to line me up with the centerline of the machine.

I then got a quick CT scan, had contrast put in (and got weird warm feelings...eww), and had another quick CT scan.

The therapist came back and removed the mask, bolus, and wire tape. Then I got my tattoo. ;) That sharpie dot became a real tattoo as she got out her India ink and tattoo needle. This helps them have a permanent mark to make sure I am always centered in the machine correctly. It actually didn't hurt at all. I've been strongly considering getting a tattoo in five years when I finally get the "cancer-free" label. Maybe it's really not that bad of an idea. :)

I then met with Dr. Nguyen to ask my billion questions and sign the paperwork saying I would let them radiate me. I think "What is radiation therapy?" deserves a whole other post. So I will save that one for later.

Well, that's all for now then. I'm going to go stare at my tattoo freckle. Ha.

Happy Hanukkah!

2009-12-12T20:49:00.004-07:00

To all of Jake's relatives out there (and any other Jewish people reading my blog), I wish you all a happy Hanukkah. Due to Jake's hospital stay last weekend and my ridiculous amount of doctor visits this past week, we only got a chance to begin holiday shopping today. I'm assuming we get an 8-day window to have gifts arrive, anyway.

Speaking of holiday shopping, for any of you out there reading this that haven't finished your shopping yet, and are planning on doing any on-line, please access Amazon through this link. Using that link gives the Oral Cancer Foundation a few cents for every purchase you make. Over time a few cents here and there can really add up and help others like myself. :)

Ode to an MRI machine

2009-12-11T17:36:00.004-07:00

So I had my first MRI session this morning. The tech asked what I was there for and when I told him I was starting radiation treatments, he said we'd get to know each other well. I guess the ROs typically order a few MRIs throughout treatment to see if things are changing. Great.

The MRI, CT, and PET scans are all so different. Honestly, even though this one has me in the machine the longest (~45 min), it's probably one of the easiest. The CT contrast stuff gives you crazy weird warm sensation that makes you feel like you're peeing yourself. The PET scan injection makes you radioactive for a while and requires a long wait time after being injected before you're allowed to hop in the machine. The MRI with contrast still required me to get an IV, but I didn't have to do any weird fasting ahead of time and as soon as I put all my belongings in a locker, we were ready to go. The machine is pretty loud though and even though I had some nice Miles Davis going this morning, all I could hear was the beeping and clicking of the machine. Here is an example of what the machine sounded like (imagine the staccato notes more like clicks):

I told the MRI tech that he needed to write music that was in the same key and tempo as the machine so it wasn't so distracting. I think he thought I was crazy.

After the MRI I got stuck with needles two more times (my vein decided to roll away from the first stab) so I could give a blood sample for approval for anesthesia. I then went and got an xray (again for anesthesia approval). I showed up to work 30 minutes later with blue bandages around both arms. What a sight!

Today I am very thankful for working for Raytheon. They have a program called Supplemental Intermittent Absence Pay (SIAP) where you can get approved to get paid for doctor appointments, radiation treatments, chemo, etc. and it doesn't have to come from my normal Paid Time Off (PTO) bucket. I had not anticipated all these appointments before treatments would begin and with only .5 hours of PTO left for the year, I was starting to stress out about how I'd be able to work all my hours this week. I knew I could apply for FMLA but there was so much paperwork to fill out for that. I spoke with the Raytheon nurse in charge of SIAP today and was approved for all my appointments this week and the three next week. Once I have my finalized chemo and radiation schedule, I'll be getting approved for those as well. It is times like these I am very thankful to be working for a company with such great benefits. :)

I guess that's all for now. Here is an updated schedule of my upcoming appointments:
12/14 4:00pm - Radiation Simulation with RO
12/15 8:00am - Finalizing Chemo treatment plan/contract with MO
12/16 afternoon - Port insertion surgery with SO
12/21 (tentative) - treatment begins

chili, cheesecake, and chemo...

2009-12-09T19:10:00.004-07:00

The chili and cheesecake is what I plan to have for dinner (in addition to my glutamine enhanced ensure..yum).

The chemo is the topic of this post.

Tonight I went back to the chemo doc's office to meet the surgical oncologist, Dr. Ong, who will be placing my port next week. It's a pretty simple procedure, but it's technically outpatient surgery, so I had to sign all these forms and have to go get an xray and bloodwork done to get the ok for anesthesia. He said I could opt to stay awake for the surgery and they'd just really numb my chest. I said "no thank you!" I hyperventilate when they draw blood... I don't really think it'd be wise for me to be awake for inserting a tube into my chest! I guess there is also an ever-so-slight risk they could puncture a lung when inserting it. I asked Dr. Ong how many times he's punctured someone's lung. He said once out of the 4000-5000 ports he's inserted in his career. I guess that is pretty good odds.

So, what exactly is a port you ask? A port is a catheter inserted below the clavicle just under the skin, that then runs to the superior vena cava, just above the heart. It provides quick access for the nurses to insert the chemo drugs or fluids, while keeping out of the way the rest of the time. Here is a picture of one, as you can see, it's not that big.

The nurse said it'd probably be sore the first couple weeks after it's inserted, but I still think this was the best option. I can imagine how crappy it would be getting an IV inserted every week (or more if I end up needing fluids at some point).

I finished my reading on cisplatin. Chemo drugs are so interesting! I don't know who came up with this, but they're geniuses! So basically cisplatin is made from platinum and the metal goes into DNA that is dividing and binds to it, so that it can't continue dividing. When that happens the cell dies. Cancer cells divide rapidly, which makes the chemo work so well against them. It also starts to kill off other rapidly dividing cells, like marrow and hair follicles. For some reason, normal cells are able to bounce back after chemo treatment is finished, but cancer cells do not.

The short-term side effects from my chemo will mainly just be nausea; however, it will also increase the effectiveness, and therefore side effects, of the radiation treatment by ten-fold. Yuck! (I will post all about radiation next week). The only other things might be a thinning of my hair and I'll stop menstruating for a couple months (sorry if that was too much for some of you.)

The long-term side effects are that I'll probably hit menopause a few years early and there is very slight a risk of a 2nd cancer because of it. The thing is, these 2nd cancers tend to show up 20 years later and for most people with cancer who are diagnosed in their 60s or 70s, 20 years later isn't that big of a deal. Even so, not doing this treatment would almost certainly lead to another recurrence and then I won't even get the option to see if something shows up 20 years later.

As long as I'm being a downer, I got to see the chemo infusion room today. It was just wall-to-wall recliners divided by half-walls with mini tvs and magazine racks and homemade afghans, with IV polls behind them. It was late when I was at there so no one was getting treatment done, but I could just imagine the chairs filled with sick, elderly folks getting chemo dripped into them with me sitting across the way. It was sort of this depressing image, but hey... at least they have tvs. :\

I'm meeting with my MO on Tuesday at 8am to finalize my treatment plan. I ran into her for a few minutes again today. She said she'd been thinking about my case and might give me 3 big doses across course of treatment instead of the 6 weekly ones. She had some case studies she'll go over with me on Tuesday and from there we will decide what we think is best. She also reiterated that I had nothing to fear because I was about the best chemo patient possible. I have healthy marrow and no other health conditions. I have the best shot of making the chemo effective.

Well, the chili is done simmering. I think it's time to eat. Until next time.... :)

I couldn't eat another thing, not even a mint...

2009-12-08T21:56:00.002-07:00

So this whole diet thing is just crazy. With my low metabolism, I have found that eating more than about 1400 calories a day causes me to gain weight. In recent years when trying to eat UNDER 1400 calories I always fail miserably, yet now that I'm trying to bulk up for radiation and chemo, I'm finding it very hard to eat much OVER 1400 calories. I'm actually starting to just get sickened by the thought of eating or large quatities of food.

That being said, for all of you out there wondering what the doctor has me eating...

In addition to whatever normal food I can handle from now until the end of treatment:
***6 bottles (1500 calories-worth) of ensure (right now I am only doing 3 since I'm so full all the time and am still eating regular food... I'm going to double-check that that is ok on Monday.)
***15g of L-glutamine twice a day (180 calories total) - helps with GI heath and provides nitrogen as if I had 36g of protein
***2000mg of fish oil twice a day (40 calories) - helps increase appetite, full of omega 3
***2 Tbs honey swish three times a day (360 calories) - from now until treatment I'm just doing one of these a day to get used to it, but once treatment starts I'm supposed to do it 15 minutes before radiation, 15 minutes after and 6 hours after that. I've been reading a bit about the curative properties of honey and some of the research out there is pretty amazing. I actually have a coworker, Liz (who is just the sweetest lady you'll ever meet), and she is a beekeeper outside of work. She brought me a jar of honey today and I am very very excited to have some homemade stuff. She's told me about how it helped other people with some pretty nasty wounds, so I hope it'll be just as effective at preventing wounds in my throat.

Well, despite being super full, I should head off to bed. I have a bottle of barium waiting for me at UMC for 7:45 tomorrow and I want to be well-rested. ;)

check, check, check...

2009-12-07T20:32:00.003-07:00

Dishes... check. Laundry... check. Groceries... check.

Ok.... so I guess I learned my lesson. No more blogging about chores needing to be done. I think I got about 4 or 5 offers of people to come live with us for a while and help out with our chores and/or hire us a maid.

I went home yesterday for a couple of hours and managed to clean all the pots/pans in the sink, do four loads of laundry, take care of the grocery shopping, play with the dogs, and eat twice. The only things really left to do are vacuum (and Jake bought me a Roomba for our anniversary, so the vacuuming pretty much takes care of itself) and the yardwork (and at this point I really should be hiring someone to fix all our landscaping, but I don't know when the best time of year is for that. I could handle most of it myself, but it's annoying doing gardening when cacti are involved. I wear super thick gloves, but I still manage to always get little pricklies in my hand).

That being said, I'm sure there will come a point when it would be nice to have someone come and stay. When that time comes, you'll know.

Also, I do have a husband back at home. Now that he's on high doses of steroids for the next two months, hopefully he'll have extra energy and much less pain, enabling him to help out with the chores.

Going back to my checklist:

Dentist approval... check.
I spoke to the dentist this morning, who said I saw him recently enough and I was clear to begin radiation treatment. I then called the RO back and scheduled by simulation for Monday.

Baseline hearing test... check.
My hearing looks perfectly normal. The only thing that was not normal was I didn't have appropriate contralateral responses (what the opposite ear responds with when a loud noise is played in just one ear). This could very likely be a temporary thing because of the recent surgery (it implies something is messed up along my 8th cranial nerve) or I could just never have had good contralateral responses, some people don't.

Initial consult with the Medical Oncologist... check.
So, once Jake was FINALLY released from the hospital around 3 (he finished his last treatment around 10:30. Hospitals are so slow with paperwork. :\), I got a call from the MO office saying that Dr. Kratz could fit me in at 4:00 if I could make it there on short notice. Jake and I decided to go since we didn't really see the point of going in to work anymore.
I will for sure be having chemo in conjunction with my radiation treatments. It seems I will be getting low-dose chemo every Monday morning, immediately followed by radiation treatments. Then Tuesday-Friday I'll just have radiation treatments. The whole thing should probably start in two weeks, so 12/21. Merry Christmas to me! That should last 6-7 weeks. Then we will review the situation and I might get an additional three doses of "mop-up chemo". Dr. Kratz didn't go into a lot a details about that, as it would really depend how things are going by that far into treatment. She gave me some reading material so I can learn all about Cisplatin, my chemo drug of choice. I'll have to write a summary on that for you guys later.

So on my to-do list for the next couple of weeks:
12/9 7:45am - Swallow test
12/9 4:00pm - Baseline bloodwork for chemo / consult with PORT placement person
12/11 7:30am - MRI
12/14 4:00pm - Radiation Simulation Session
12/15 TBD - Making a contract/schedule with the MO
12/? (sometime 12/10 - 12/18) - PORT insertion (I have no veins in my forearms, so I had the option of getting a PICC line, which would stay on an armband on my upper arm during the course of chemo treatment...or...a PORT, which they knock me out for and insert under my skin in my chest. As long as I'm not wearing a super revealing shirt, no one can see it. I opted for the PORT).
12/21 (tentatively) - Begin chemo, then radiation treatment.

I can't even remember what it's like to be "normal"

2009-12-06T10:16:00.002-07:00

I'm tired. I haven't been sleeping well these past couple of nights, and aside from the fact that my constantly-full stomach makes it harder to sleep, my health issues have not been the reason I've not been sleeping.

It's been lonely the past two nights and hard to get to sleep when I know there are so many chores to take care of. Jake has not been home. Jake decided to opt for treatment for his Hashimoto's Encephalopathy by admitting himself to the hospital on Friday night to begin a 3-day course of high-dose IV steroids. This treatment is supposed to relieve all symptoms in 1-3 days. As Jake sits in front of me getting dose 4 of 6, without much sign of improvement, we begin to worry that the HE may not be what is causing the pain. Fingers crossed that he begins to see some improvement soon.

I want to be there for my husband while he's in the hospital. I know how boring and lonely hospital stays can be, especially when you feel fine, but are confined there anyway. I have so many other day-to-day issues to deal with, though, it's hard to be there as much as I'd like. There are dishes piling up in the sink and laundry that needs washing. The dogs are being neglected and it seems like with my diet, I have to keep leaving to go eat something. I need to go grocery shopping and vaccumm and clean up the weeds in the front yard.... It's so hard trying to maintain a routine when you see doctor's offices and hospitals more than your own house.

Also, with the five appointments I need this week and the fact that I have a mere 1/2 hour of paid time off left for the rest of the year, I need to do work this weekend to make up for the hours I'll be missing this week. *sigh*

Well, my husband is bored, so I think it's time for another game of King's Corner....

is it weird to be excited after meeting with my radiation oncologist?

2009-12-04T23:34:00.001-07:00

I had a good meeting today with my oncologist, despite the fact that none of my records got sent to him and he had no warning that I had had a recurrence, even though I called weeks ago to let them know for this appointment. :\

My RO is an associate professor at the U of A school of medicine, in addition to being associated with the comprehensive cancer center here in Tucson, the only CCC in all of Arizona. His research is in Head and Neck cancers and in recent years has been focusing on younger patients. He said he had sort of expected this recurrence in me, which is why he had had me stopping by for checkups every few months even though he had not recommended radiation the first time around. He says these cancers in young people tend to be very aggressive and that is why. He went over a lot of the side effects of radiation, the basic areas that will be treated, and all the appointments I would need to have done before I could even begin.... So, within the next week I will be seeing:
1. The Dentist - I need to get his ok, before I can even schedule treatment. Apparently, any dental work that requires teeth removal, ever, after radiation treatment could cause my jaw to shatter. The dentist has to do any potential dental work before I begin radiation.
2. An MRI machine - my RO wants to image my head and neck to see if he can find any source for this recurrence. It is odd that it moved sides, so he's looking for a possible point of origin. The PET/CTs I've had before only show the cancer if it's larger than 7mm. The MRI should be able to show smaller areas.
3. My ENT - I have to have a baseline hearing test, as radiation treatment possibly could damage my inner ear.
4. A bottle of barium - I have to have a baseline swallowing test, by drinking barium in front of an xray screen (cool!).
5. A Medical Oncologist - My RO strongly recommends chemo in conjunction with the radiation treatment, as in the studies he's done with my type of cancer, the chemo can increase my chance of 5-year survival by 15-20%!

After those five appointments, I will return to see my RO. I will then begin creating a mask and doing the simulation to set up my treatment plan. They will be radiating both sides using Helical tomotherapy, a new, advanced form of IMRT, only available at a handful of hospitals. It is very good at targeting specific areas and avoiding healthy tissue. They will be specifically avoiding my larynx and my right cheek (in order to save one of my major salivary glands).

The part of my appointment that made me the most excited, though, is that Dr. Nguyen has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG (feeding tube). Many cases I've read about have the PEG installed before treatment even begins, since once you actually need it, it's too late to have it put in effectively. My RO said this was going to be like preparing for a marathon, so for the next week or two before I start treatment, and then for as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements to add to my normal diet. I can't imagine losing that much weight during treatment, that I need to try to put on that much.... but I will listen to the doctor. I soooooooooo want to avoid getting a PEG. The whole idea of it just sounds miserable. For some reason, I understand the effects of radiation and chemotherpy, yet the part I'm dreading the most is the PEG. Ha! I'm very glad to have a good chance at avoiding one.

It's getting late, so I supose I should get going to bed.

I'm actually in a good mood tonight. I think Dr. Nguyen is just what I needed to "Nguyen" this fight against cancer, once and for all. :)