An official end to cancer

Well, this post will be short. Things have been going super well for me health-wise over the past year. I continue to get positive check-ups and negative scans.

I want this blog to stay available and searchable for anyone else out there who was in my shoes.

Today, though, I will officially close the book on my cancer, and I will not blog here again. This morning I had my port finally removed. It's been a little over two years of being in remission, so I somewhat see today to be my official end of cancer. Hurray!

Happy reading and the best to all of you. :)

Do I have to post about cancer?

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?

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...

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

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...

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!

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!

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

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?

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"

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

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!

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

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...

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

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...

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. :)