Birthday bash, then blah...

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...

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

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

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...

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!