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.
Wednesday, September 29, 2010
Monday, September 27, 2010
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!
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 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.
Sunday, September 26, 2010
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.
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.
Thursday, September 16, 2010
Birthday bash, then blah...
Well... I guess the American Cancer Society can add one more number to their more birthdays campaign.
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. :)
Note the binary candles/holes on my cake:
11010 (which converts to 26 in base ten)... we're such dorks. :)
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. :)
Thursday, September 9, 2010
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!
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!
Wednesday, September 8, 2010
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!
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!
Monday, September 6, 2010
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. :)
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. :)
Subscribe to:
Posts (Atom)
