2 years ago...

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.

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

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!

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...

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

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..."

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.